Adaptation and psychometric evaluation of the short version of Family Sense of Coherence Scale in a sample of persons with cancer in the palliative stage and their family members
Möllerberg, Marie-Louise; Årestedt, Kristofer; Sandgren, Anna; Benzein, Eva; Swahnberg, Katarina
(2020)
Objectives: For patients' entire families, it can be challenging to live with cancer during the palliative stage. However, a sense of coherence buffers stress and could help health professionals identify families that require support. Therefore, the short version of the Family Sense of Coherence Scale (FSOC-S) was translated, culturally adapted, and validated in a Swedish sample.Methods: Translation and cross-cultural adaptation of the FSOC-S into Swedish was conducted in accordance with the World Health Organization's Process for Translation and Adaptation of Research Instruments guidelines. Participants were recruited from two oncology clinics and two palliative centers in Sweden.Results: Content validity was supported by experts (n = 7), persons with cancer (n = 179), and family members (n = 165). Homogeneity among items was satisfactory for persons with cancer and family members (item-total correlations were 0.45‒0.70 and 0.55‒0.72, respectively) as well as internal consistency (ordinal alpha = 0.91 and 0.91, respectively). Factor analyses supported unidimensionality. FSOC-S correlated (rs > 0.3) with hope, anxiety, and symptoms of depression, which supported convergent validity. The test-retest reliability for items ranged between fair and good (kw = 0.37‒0.61).Significance Of Results: The FSOC-S has satisfactory measurement properties to assess family sense of coherence in persons with cancer and their family members. FSOC-S could be used to identify family members who experience low levels of perceived family sense of coherence which provides health care professionals with insight into families' needs and ability to live with cancer in the palliative stage.
Analyzing the situation of older family caregivers with a focus on health-related quality of life and pain: a cross-sectional cohort study
Fagerström, Cecilia; Elmståhl, Sölve; Wranker, Lena Sandin
(2020)
Abstract:
Background: For a significant proportion of the older population, increasing age is associated with health problems and worsening health. Older family caregivers are largely responsible for care of next-of-kin living at home, which impacts their own physical and mental health both positively and negatively. However, evidence is insufficient regarding the health situation of older caregivers. The aim of this study was to investigate health-related quality of life (HRQoL) and pain, and their associations, among caregivers aged ≥60 years.Methods: The participants (n = 3444) were recruited from the Swedish National Study on Aging and Care-Blekinge and Good Aging in Skåne during 2001-2004. Participants aged ≥60 years were selected randomly and underwent cognitive tests, with demographic information obtained through questionnaires. The response rate was 60%. A predefined research protocol was used. HRQoL was measured with the Short-Form Health Survey, dimension mental health. Logistic regression models were used to investigate the associations between HRQoL and pain as well as control factors.Results: Family caregiving was reported by 395 (11.5%) of the participants, and 56.7% of the caregivers reported pain. Family caregivers reported lower pain intensity on the Visual Analogue Scale and were younger, on median, than non-caregivers. Irrespective of caregiver status, pain was associated with mental HRQoL. Concerns about personal health and financial status had the strongest associations with mental HRQOL in both groups, but the levels were higher among caregivers.Conclusion: Pain was one factor associated with low HRQoL regardless of family caregiver status and remained important when controlling for factors related to advanced age. This finding remained among family caregivers, though they reported lower pain intensity. Factors other than pain were shown to be important to mental HRQoL and should also be taken into consideration when discussing actions for family caregivers to maintain and improve health and HRQoL.Trial Registration Number: Not applicable.
Analyzing the situation of older family caregivers with a focus on health-related quality of life and pain: a cross-sectional cohort study
Fagerström, Cecilia; Elmståhl, Sölve; Wranker, Lena Sandin
(2020)
Abstract:
Background: For a significant proportion of the older population, increasing age is associated with health problems and worsening health. Older family caregivers are largely responsible for care of next-of-kin living at home, which impacts their own physical and mental health both positively and negatively. However, evidence is insufficient regarding the health situation of older caregivers. The aim of this study was to investigate health-related quality of life (HRQoL) and pain, and their associations, among caregivers aged ≥60 years.Methods: The participants (n = 3444) were recruited from the Swedish National Study on Aging and Care-Blekinge and Good Aging in Skåne during 2001-2004. Participants aged ≥60 years were selected randomly and underwent cognitive tests, with demographic information obtained through questionnaires. The response rate was 60%. A predefined research protocol was used. HRQoL was measured with the Short-Form Health Survey, dimension mental health. Logistic regression models were used to investigate the associations between HRQoL and pain as well as control factors.Results: Family caregiving was reported by 395 (11.5%) of the participants, and 56.7% of the caregivers reported pain. Family caregivers reported lower pain intensity on the Visual Analogue Scale and were younger, on median, than non-caregivers. Irrespective of caregiver status, pain was associated with mental HRQoL. Concerns about personal health and financial status had the strongest associations with mental HRQOL in both groups, but the levels were higher among caregivers.Conclusion: Pain was one factor associated with low HRQoL regardless of family caregiver status and remained important when controlling for factors related to advanced age. This finding remained among family caregivers, though they reported lower pain intensity. Factors other than pain were shown to be important to mental HRQoL and should also be taken into consideration when discussing actions for family caregivers to maintain and improve health and HRQoL.Trial Registration Number: Not applicable.
Anhöriga som vårdar eller stödjer närstående äldre personer : underlag till en nationell strategi
Socialstyrelsen
(2020)
Den 1 juli 2009 infördes en ändring i 5 kap. 10 § socialtjänstlagen (2001:453), SoL, som tydliggör att socialtjänsten ska erbjuda stöd för att underlätta för de personer som vårdar en närstående som är långvarigt sjuk eller äldre eller som stödjer en person med funktionsnedsättning. Anhörigstödet ska kännetecknas av individualisering, flexibilitet och kvalitet. Regionerna saknar motsvarande skyldighet, men hälso- och sjukvården har ett ansvar att identifiera och arbeta hälsofrämjande och förebyggande med personer eller grupper som riskerar att drabbas av ohälsa. Eftersom många anhöriga riskerar just detta har regeringen tidigare markerat att de omfattas av detta ansvar. Denna rapport redovisar ett regeringsuppdrag till Socialstyrelsen att lämna ett samlat underlag för en bred nationell strategi för anhöriga som vårdar eller stödjer närstående äldre personer. Syftet med den kommande strategin är att utifrån bästa tillgängliga kunskap bidra till att stöd till anhöriga som vårdar eller stödjer en närstående äldre är tillgängligt och utformat efter behov
Anhörigperspektiv - en möjlighet till utveckling? Nationell kartläggning av kommunernas stöd till anhöriga 2019
Takter Martina
(2020)
Syftet med denna studie är att skapa en översikt
och en systematisk redovisning. Förhoppningen
är också att projektet utvecklas till att bli en
återkommande studie med jämnt intervall för
att på sikt bidra till större jämlikhet mellan
kommunerna och få en mer systematisk översikt.
Projektet syftar också till att inspirera kommuner
samt lyfta några exempel från kommunerna av
det som görs runt om i landet.
En sammanfattning av resultatet kommer att
finnas tillgängligt i en Excel-fil på Anhörigas
Riksförbunds hemsida, anhorigasriksforbund.se.
Excelfilen kan användas för att skaffa sig en
överblick av stöd till anhöriga och fördjupa sig
ytterligare i resultaten. Den kan också användas
i arbetet med att ta fram idéer om hur man
bygger upp och vidareutvecklar ett stöd till
anhöriga, som är tillgängligt för alla anhöriga
oavsett ålder och diagnos hos den närstående.
Barns erfarenheter av ”the Family Talk Intervention”: Att leva med en svårt sjuk förälder som vårdas inom specialiserad palliativ hemsjukvård
Eklund, Rakel
(2020)
Avhandling
Abstract [sv]
När en förälder i en barnfamilj får en livshotande sjukdom förändras livet för allai familjen. Barn som lever i denna situation rapporterar att de upplever oro och skuld relaterat till förälderns sjukdom. Dessutom har barnen en ökad risk för psykisk ohälsa. Brist på kommunikation inom familjen om sjukdomen och ämnen relaterade till den, har visat sig ha en negativ påverkan på hälsan. Trots detta finns endast ett fåtal stödinterventioner utvärderade för barnfamiljer i palliativ vård, och ännu färre utvärderade utifrån barns erfarenheter. The Family Talk Intervention (FTI) är en familjecentrerad intervention, med barnen i fokus, som visat på positiva effekter gällande sjukdomsrelaterad information och ökad kommunikation för barnfamiljer inom psykiatrisk och somatisk vård. Det övergripande syftet med denna avhandling var att utforska barns erfarenheter av FTI och att leva med en svårt sjuk förälder som vårdas inom specialiserad palliativ hemsjukvård. Avhandlingen påvisar att de flesta barnen ville veta mer om sin förälders sjukdom. De yngre barnen rapporterade svårigheter både med att berätta om, och med att visa hur de själva mådde för någon i sin familj. De barn som deltog i FTI uppskattade strukturen och innehållet, de kände sig sedda, hörda och uppmärksammade under FTI, vilket skapade en känsla av tillit och trygghet.Alla barn blev lyssnade till och fick stöd att uttrycka både svårigheter och faktorer som kunde underlätta för dem. Under interventionen var det dock endast för ett fåtal barn som deras synpunkter och åsikter togs i beaktan, i enlighet med artikel 12 i barnkonventionen. De flesta barn rapporterade dock att FTI ökade kunskaperna om förälderns sjukdom och att det blev lättare att kommunicera med sina föräldrar. Genom sitt deltagande i FTI kunde barnen förbereda sig inför framtida sjukdomsrelaterade händelser, och hantering av konflikter underlättades.Resultatet visar att de behov barnen hade innan deltagande i FTI till stor del tillgodosågs under deltagandet. FTI innehar dock en struktur som ger föräldrarnas perspektiv större utrymme än barnens. Barnens perspektiv behöver således tas i beaktan i större utsträckning i syfte att det stöd som ges till dessa barn verkligen är till för dem. FTI tycks trots detta vara genomförbart och betydelsefullt för de barn som deltagit.
Beyond the definition of formal care: Informal care arrangements among older swedes who are not family
Siira, Elin; Rolandsson, Bertil; Wijk, Helle; Wolf, Axel
(2020)
Despite the well‐known associations between local environment and health, few studies have focused on environment and healthcare utilisation, for instance healthcare seeking behaviour or adherence. This study was aimed at analysing housing type, behaviour based on perceived local outdoor safety, social support, informal caregiving, demographics, socioeconomics, and long‐term illness, and associations with health‐seeking and adherence behaviours at a population level. This study used data from the Swedish National Public Health Survey 2004–2014, an annually repeated, large sample, cross‐sectional, population‐based survey study. In all, questionnaires from 100,433 individuals were returned by post, making the response rate 52.9% (100,433/190,000). Descriptive statistics and multiple logistic regressions were used to investigate associations between explanatory variables and the outcomes of refraining from seeking care and non‐adherence behaviour. Living in rented apartment, lodger, a dorm or other was associated with reporting refraining from seeking care (adjusted OR 1.16, 95% CI 1.00–1.22), and non‐adherence (adjusted OR 1.22; 95% CI 1.13–1.31). Refraining from going out due to a perceived unsafe neighbourhood was associated with refraining from seeking care (adjusted OR 1.59, 95% CI 1.51–1.67) and non‐adherence (adjusted OR 1.26, 95% CI 1.17–1.36). Social support and status as an informal caregiver was associated with higher odds of refraining from seeking medical care and non‐adherence. This study suggests that living in rental housing, refraining from going out due to neighbourhood safety concerns, lack of social support or informal caregiver status are associated with lower health‐seeking behaviour and non‐adherence to prescribed medication.
Beyond the definition of formal care: Informal care arrangements among older swedes who are not family
Siira, Elin; Rolandsson, Bertil; Wijk, Helle; Wolf, Axel
(2020)
Abstract
This study explores care practices of older people outside formal care and without appealing to predefined relationships. We conducted interviews with 30 independent‐living men and women aged 67–93 in three municipalities in Sweden. The interviews explored how they cared for themselves and other older people who were not family. Interviews were conducted between December 2017 and May 2018 and later transcribed and analysed using grounded theory. Our paper presents one of the first studies on informal care practices among older people that looks beyond the definition of formal care to understand how such care complements formal care services. The findings show that older people participate in several care arrangements to care for themselves as well as for others. The arrangements feature different types of mutuality and include distant relations to other older people and larger more or less formalised groups. The findings highlight the importance of looking beyond conceptualisations of care based on understandings of formal care and specific relationships as a frame for understanding informal care. To promote older people's health by cultivating and supporting older people's care for themselves and others, research and healthcare practitioners need to explore and acknowledge the significance and complexity of older people's everyday care practices.
Care robot orientation: What, who and how? Potential users’ perceptions
Johansson-Pajala, Rose-Marie ; Thommes, Kirsten ; Hoppe, Julia A ; Tuisku, Outi ; Hennala, Lea ; Pekkarinen, Satu ; Melkas, Helinä ; Gustafsson, Christine
(2020)
Abstract:
Exploring the specific field of care robot orientation generates many questions regarding the meaning, content and how it should be conducted. The issue is important due to the general digitalisation and implementation of welfare technology and care robots. The aim of the study was to explore perceptions of care robot orientation from the potential users' perspective. Data were collected by focus group interviews in Finland, Germany and Sweden. In all three countries, potential user groups were represented: older adults, relatives, professional caregivers and care service managers. A qualitative descriptive method was used for analysing data. The data revealed three aspects of care robot orientation: (1) What care robot orientation is, (2) Who needs it and by Whom it should be given and (3) How it should be performed. The need for care robot orientation is general in society. In the absence of knowledge about care robots, it is nearly impossible to know what to ask for or actually seek information about. Therefore, care robot orientation must be founded on agile implementation planning for care robots, with a firm basis in trustworthy knowledge and information and respecting individuals' wishes. This also gives rise to an ethical challenge when care robots are offered to people having reduced decision-making ability (dementia, cognitive impairment), along with the issue of who then should make the decision. The mapping of the What, Who/Whom and How aspects of care robot orientation offers a foundation for the creation of orientation models, which might facilitate structured and goal-oriented care robot orientation strategies.
Challenges and Recommendations for the Developments of Information and Communication Technology Solutions for Informal Caregivers
Alhassan Yosri, Ibrahim Hassan
(2020)
Abstract
Background: Information and communication technology (ICT)-based solutions have the potential to support informal caregivers in home care delivery. However, there are many challenges to the deployment of these solutions.
Objective: The aim of this study was to review literature to explore the challenges of the deployment of ICT-based support solutions for informal caregivers and provide relevant recommendations on how to overcome these challenges.
Methods: A scoping review methodology was used following the Arksey and O'Malley methodological framework to map the relevant literature. A search was conducted using PubMed, IEEE library, and Scopus. Publication screening and scrutiny were conducted following inclusion criteria based on inductive thematic analysis to gain insight into patterns of challenges rising from deploying ICT-based support solutions for informal caregivers. The analysis took place through an iterative process of combining, categorizing, summarizing, and comparing information across studies. Through this iterative process, relevant information was identified and coded under emergent broader themes as they pertain to each of the research questions.
Results: The analysis identified 18 common challenges using a coding scheme grouping them under four thematic categories: technology-related, organizational, socioeconomic, and ethical challenges. These range from specific challenges related to the technological component of the ICT-based service such as design and usability of technology, to organizational challenges such as fragmentation of support solutions to socioeconomic challenges such as funding of technology and sustainability of solutions to ethical challenges around autonomy and privacy of data. For each identified challenge, recommendations were created on how to overcome it. The recommendations from this study can provide guidance for the deployment of ICT-based support solutions for informal caregivers.
Conclusions: Despite a growing interest in the potential offered by ICT solutions for informal caregiving, diverse and overlapping challenges to their deployment still remain. Designers for ICTs for informal caregivers should follow participatory design and involve older informal caregivers in the design process as much as possible. A collaboration between designers and academic researchers is also needed to ensure ICT solutions are designed with the current empirical evidence in mind. Taking actions to build the digital skills of informal caregivers early in the caregiving process is crucial for optimal use of available ICT solutions. Moreover, the lack of awareness of the potential added-value and trust toward ICT-based support solutions requires strategies to raise awareness among all stakeholders-including policy makers, health care professionals, informal caregivers, and care recipients-about support opportunities offered by ICT. On the macro-level, policies to fund ICT solutions that have been shown to be effective at supporting and improving informal caregiver health outcomes via subsidies or other incentives should be considered.
Demens - Anhörig På Liv och Död
Öhman Camilla
(2020)
Camilla Öhmans gripande berättelse om sin mamma som insjuknade och avled i en avancerad form av demenssjukdom som heter Frontallobsdemens. Boken är ärligt skriven om egna livserfarenheter och beskriver dem olika händelseförlopp och stadier i sjukdomen, bemötandet inom vården samt ger anhöriga konkreta råd på vägen. Som läsare kommer du även få ta del av guldkornen i en familjs historia om en stark kärlek, hyllningen till livet, föräldraskap och om envisheten att fortsätta kämpa fastän livet visar oss sin hårdaste sida.
Denna ljudbok är skapad för att hjälpa andra anhöriga som lever nära en person som är sjuk i en demenssjukdom men även för dem som önskar få en bättre förståelse om sjukdomen som sådan. Det är viktigt att belysa hur dessa personer med denna form av sjukdom och dess anhöriga bemöts av samhället idag. Det är dags att våga börja prata öppet om dessa sjukdomar för att påverka situationen med att se till att de demenssjuka ska få en bra vård, men även att dem anhöriga ska erhålla rätt stöd då livet för dem dagligen består av olika utmaningar och andra påfrestningar som riskerar dem själva att bli sjuka.
Development and Evaluation of the Grief and Communication Family Support Intervention for Parentally Bereaved Families in Sweden
Weber Falk, Megan
(2020)
Avhandling
Each year in Sweden, approximately 6,900 children will have a parent diagnosed with cancer. Of all the children in Sweden born between 1990–1992, 5.6% have a parent with cancer and 1.1% of them have already had a parent die from cancer. Bereavement support is an important component in palliative care, which aims to alleviate the physical, psychological, and spiritual suffering of patients and their family members. Several, but not all families participating in the studies in this thesis came from a palliative care setting. Earlier research has shown that parentally bereaved children often experience psychological problems, physical problems, reduced self-esteem, difficulties communicating,school and behavioral problems, and/or complicated grief, with approximately 10% of parentally bereaved children experiencing some type of clinically significant psychological difficulty. Moreover, a child's response to a parent's death is often mediated by how their surviving parent responds to the loss. Still, support for bereaved children and families is limited in Sweden. The overall aim of this research project was to explore and describe psychological health, grief, and family communication among parentally bereaved children and surviving parents and to develop and evaluate a supportive family intervention. Four studies were conducted including an interview study exploring family communication in parentally bereaved families, a questionnaire study examining associations between family communication and psychological health in parentally bereaved children and adolescents, and the adaptation and evaluation of the Grief and Communication Family Support Intervention. Results from these four studies indicated that communication may be an important factor for adjustment following the death of a parent. Specifically, communication in some parentally bereaved families may involve conflict, which may in turn affect child and adolescent psychological health. Results from testing the Grief and Communication Family Support Intervention indicate that it may improve family communication and relationships. Testing the Grief and Communication Family Support Intervention with larger, more diverse samples is necessary to confirm these results. The results imply that helping families find ways to adjust and adapt in healthy ways following the death of a parent, potentially through the Grief and Communication Family Support Intervention, is likely to improve psychological health and communication among bereaved family members.
Development and Evaluation of the Grief and Communication Family Support Intervention for Parentally Bereaved Families in Sweden
Weber hammar, Megan
(2020)
Each year in Sweden, approximately 6,900 children will have a parent diagnosed with cancer. Of all the children in Sweden born between 1990–1992, 5.6% have a parent with cancer and 1.1% of them have already had a parent die from cancer. Bereavement support is an important component in palliative care, which aims to alleviate the physical, psychological, and spiritual suffering of patients and their family members. Several, but not all families participating in the studies in this thesis came from a palliative care setting. Earlier research has shown that parentally bereaved children often experience psychological problems, physical problems, reduced self-esteem, difficulties communicating,school and behavioral problems, and/or complicated grief, with approximately 10% of parentally bereaved children experiencing some type of clinically significant psychological difficulty. Moreover, a child's response to a parent's death is often mediated by how their surviving parent responds to the loss. Still, support for bereaved children and families is limited in Sweden. The overall aim of this research project was to explore and describe psychological health, grief, and family communication among parentally bereaved children and surviving parents and to develop and evaluate a supportive family intervention. Four studies were conducted including an interview study exploring family communication in parentally bereaved families, a questionnaire study examining associations between family communication and psychological health in parentally bereaved children and adolescents, and the adaptation and evaluation of the Grief and Communication Family Support Intervention. Results from these four studies indicated that communication may be an important factor for adjustment following the death of a parent. Specifically, communication in some parentally bereaved families may involve conflict, which may in turn affect child and adolescent psychological health. Results from testing the Grief and Communication Family Support Intervention indicate that it may improve family communication and relationships. Testing the Grief and Communication Family Support Intervention with larger, more diverse samples is necessary to confirm these results. The results imply that helping families find ways to adjust and adapt in healthy ways following the death of a parent, potentially through the Grief and Communication Family Support Intervention, is likely to improve psychological health and communication among bereaved family members.
Does long-term care coverage shape the impact of informal care-giving on quality of life? A difference-in-difference approach
van den Broek, Thijs Grundy, Emily
(2020)
Abstract
The impact that providing care to ageing parents has on adult children's lives may depend on the long-term care (LTC) context. A common approach to test this is to compare whether the impact of care-giving varies between countries with different LTC coverage. However, this approach leaves considerable room for omitted variable bias. We use individual fixed-effects analyses to reduce bias in the estimates of the effects of informal care-giving on quality of life, and combine this with a difference-in-difference approach to reduce bias in the estimated moderating impact of LTC coverage on these effects. We draw on longitudinal data for Sweden and Denmark from the Survey of Health, Ageing and Retirement in Europe (SHARE) collected between 2004 and 2015. Both countries traditionally had generous LTC coverage, but cutbacks were implemented at the end of the 20th century in Sweden and more recently in Denmark. We use this country difference in the timing of the cutbacks to shed light on effects of LTC coverage on the impact care-giving has on quality of life. Our analyses show that care-giving was more detrimental for quality of life in Sweden than in Denmark, and this difference weakened significantly when LTC coverage was reduced in Denmark, but not in Sweden. This suggests that LTC coverage shapes the impact of care-giving on quality of life
Doing things together”: Towards a health promoting approach to couples’ relationships and everyday life in dementia.
Bielsten, Therése
(2020)
Background: Most people with dementia live in their own homes, often together with their partners, who become informal caregivers. Relationship quality and sense of couplehood can be threatened as a result of the transition from a mutually interdependent relationship to a caregiver-care-receiver relationship. This, in turn, may lead to many negative consequences for both partners. Support provided for couples is often divided into different types for the person with dementia and for the partner without dementia and lacks couple-based support that targets the relationship, resources and the couple's everyday life together. Aim: The overall aim of this thesis is to explore couple-centred interventions in dementia and to develop and test a salutogenic, resource-oriented and couple-based intervention among couples in which one partner has dementia living at home. Methods and findings: This thesis comprises three parts: The first part Exploring involves two linked reviews, one narrative review (study I A) and one scoping review (study I B) that aim to identify and describe what previous couple-centred interventions comprised and why they were conducted. The results of the reviews revealed a knowledge gap in and a need for easily accessible support that targets couple relationships, resources and everyday life. The second part Developing (study II) refers to the development of an easily accessible resource-oriented couple-management intervention. The first step was to identify priority topics for such an intervention through a co-researcher process with couples living with dementia. This included a comprehensive literature review, interviews with couples in which one partner has dementia, and consultation meetings with expert groups of people with dementia and partners in both Sweden and the UK. The co-researcher process and the expert meetings informed four main themes with corresponding sub-themes that couples with dementia considered as important to their wellbeing in their everyday lives: (1) Home and Neighbourhood, (2) Meaningful Activities and Relationships, (3) Approach and Empowerment, and (4) Couplehood. The themes were further developed and integrated into the multimedia application DemPower, which was developed for the delivery of the intervention. The third part Testing and Evaluating describes a feasibility study (study III) in which the DemPower application was tested for feasibility and acceptability among couples in Sweden and the UK. The results of the feasibility study indicated that the DemPower intervention was feasible and acceptable among couples in which one partner has dementia living at home. The testing and evaluating part also comprise a qualitative study (study IV) that explores the experiences of engaging with DemPower together as a couple living with dementia in Sweden. The findings resulted in the three themes: (1) Growth of the relationship, (2) We are not alone, and (3) Positive approach, which the couples appreciated and associated with the resource-oriented and salutogenic approach of DemPower. The overall findings of the thesis are presented in a concluding synthesis at the end of the thesis. The concluding synthesis, focused on "Meaningfulness", "Empowering health promotion", "Normalization" and "Transitions and couplehood", represents the core findings of this thesis
Existentiell ensamhet hos sköra äldre personer: ett närståendeperspektiv.
Larsson, Helena
(2020)
Avhandling
Svenska
The aim of this thesis was to explore existential loneliness from the perspective of significant others, to contrast their perceptions with frail older people's experiences and to describe significant others' and family care advisors' views on existential support. This thesis is part of a larger research project about existential loneliness among frail older people, the LONE study. The thesis embraces three qualitative and one quantitative study. A total of 29 significant others, 15 frail older people and 120 family care advisors participated in the studies. The significant others were husbands, wives, daughters, sons, other relatives and friends to frail older people. The concept 'frail older people' was defined as older persons (≥ 75 years old) dependent on long-term health- or social care. The qualitative studies were based on multistage focus-group interviews (study I) and individual interviews (studies II and III). The quantitative study (IV) had a cross-sectional design and was based on a questionnaire specifically developed for the current study. Different methods to analyse data were used; hermeneutics (study I), content analysis (study II), a case study with thematic analysis (study III) and descriptive statistics (study IV). Findings from the four studies show that existential loneliness emerges when: 1) Longing for, but also striving for, a deeper feeling of connectedness, 2) Being in, but also enduring, an unwanted separation, and 3) Not finding, but still trying to recreate meaning. This thesis also shows that existential loneliness is often experienced in so-called limit situations in life and arises in difficult choices related to close relationships, in connection with experiences of meaninglessness and in the absence of connection to something or someone. The results show that existential loneliness emerges in the process of balancing between what was and what is to come in the unknown future. Significant others navigate themselves, and sometimes together with the older person, through an unfamiliar existence that makes them feel ambivalent about the de-cisions they have previously made and the decisions they need to make in the future, while also doubting the meaning in their current situation. Existential support should mainly focus on transition phases and on relational aspects. Person-centredness can be a way to make the existential needs of significant others and older people visible and to provide support based on their needs.
Familjebaserad behandling: handbok för föräldrar vars barn behandlas för anorexia nervosa
Ganci, Maria
(2020)
Familjebaserad behandling är den standardbehandling som används för barn och ungdomar som lider av anorexia nervosa. Det är också den behandlingsform som ger bäst evidensbaserade resultat. Men att hjälpa ett barn som insjuknat i anorexia kräver mycket av föräldrar och familj och det är svårt att förutse hur intensiv den familjebaserade behandlingen är. I den här handboken får läsaren hjälp att förstå sjukdomen. Boken är praktiskt inriktad och författaren redogör för alla aspekter av behandlingen. Här beskrivs hinder och anorektiska beteenden som motverkar tillfrisknandet men författaren ger också tydliga verktyg för att lösa olika situationer. Familjebaserad behandling är en värdefull resurs för föräldrar som ska påbörja eller redan deltar i en familjebaserad behandling. Boken är också ett ovärderligt verktyg för vårdteam som ska vägleda familjer.
Glömskans spår - Demens från ett anhörigperspektiv
Larsson Mari
(2020)
Boken handlar om min tid som demensanhörig. Den innehåller också råd och tips till anhöriga samt egna skrivna dikter. Mer information om boken finns på min bokblogg www.vingpenna.blogspot.se.
Första upplagan 2009, nytryck 2020
Hur påverkas vuxna barn av att ha en åldrande förälder?
Norén, Anna
(2020)
Sammanfattning
Denna rapport undersöker hur vuxna barns arbetsutbud och hälsa påverkas av att ha en åldrande förälder i behov av omvårdnad. I uppsatsen undersöks det ökade omvårdnadsbehovet dels under föräldrars sista år i livet och dels som följd av en stroke. Effekten av att ha en åldrande förälder med förhöjt omvårdnadsbehov studeras genom att jämföra söners och döttrars sysselsättning, inkomst och hälsa före och efter det att föräldern dör respektive får en stroke. Studien visar att sysselsättning och inkomst sjunker något under förälderns sista år i livet, men att effekten är störst under det år, och året efter, förälderns död. Det finns också tecken på att döttrars sjukskrivning ökar det år föräldern avlider. Däremot påverkas inte sysselsättning och inkomst bland vuxna barn till föräldrar som drabbas av stroke. Det finns heller inga tydliga könsskillnader i effekterna. Sammantaget tyder resultaten på förälderns omsorgsbehov har en begränsad påverkan på vuxna söners och döttrars arbetsutbud.
Increasing preparedness for caregiving and death in family caregivers of patients with severe illness who are cared for at home – study protocol for a web-based intervention
Alvariza, Anette ; Häger-Tibell, Louise ; Holm, Maja ; Steineck, Gunnar ; Kreicbergs, Ulrika
(2020)
Abstract
Family caregivers of patients with severe illness and in need for a palliative care approach, face numerous challenges and report having insufficient preparedness for the caregiver role as well as a need for information and psychosocial support. Preparing to care for a severely ill family members also means becoming aware of death. Feelings of being prepared are associated with positive aspects and regarded protective against negative health consequences. The study adheres to the SPIRIT-guidelines (Supplementary 1), uses a pre-post design and include a web-based intervention. Inclusion criteria are; being a family caregiver of a patient with severe illness and in need of a palliative care approach. The intervention which aims to increase preparedness for caregiving and death is grounded in theory, research and clinical experience. The topics cover: medical issues, symptoms and symptom relief; communication within the couple, how to spend the time before death, being a caregiver, planning for the moment of death and; considerations of the future. The intervention is presented through videos and informative texts. The website also holds an online peer-support discussion forum. Study aims are to: evaluate feasibility in terms of framework, content, usage and partners' experiences; explore how the use of the website, influences family caregivers' preparedness for caregiving and death; explore how the use of the website influences family caregivers' knowledge about medical issues, their communication with the patient and their considerations of the future; and to investigate how the family caregivers' preparedness for caregiving and death influences their physical and psychological health and quality of life 1 year after the patient's death. Data will be collected through qualitative interviews and a study-specific questionnaire at four time-points. This project will provide information about whether support via a website has the potential to increase preparedness for caregiving and death and thereby decrease negative health consequences for family caregivers of patients affected by severe illness. It will provide new knowledge about intervention development, delivery, and evaluation in a palliative care context. Identification of factors before death and their association with family caregivers' preparedness and long-term health may change future clinical work.
Informal Caregiving and Quality of Life Among Older Adults: Prospective Analyses from the Swedish Longitudinal Occupational Survey of Health (SLOSH)
Lawrence B. Sacco, Stefanie König, Hugo Westerlund, Loretta G. Platts
(2020)
Abstract [en]
Providing unpaid informal care to someone who is ill or disabled is a common experience in later life. While a supportive and potentially rewarding role, informal care can become a time and emotionally demanding activity, which may hinder older adults' quality of life. In a context of rising demand for informal carers, we investigated how caregiving states and transitions are linked to overall levels and changes in quality of life, and how the relationship varies according to care intensity and burden. We used fixed effects and change analyses to examine six-wave panel data (2008–2018) from the Swedish Longitudinal Occupational Survey of Health (SLOSH, n = 5076; ages 50–74). The CASP-19 scale is used to assess both positive and negative aspects of older adults' quality of life. Caregiving was related with lower levels of quality of life in a graded manner, with those providing more weekly hours and reporting greater burden experiencing larger declines. Two-year transitions corresponding to starting, ceasing and continuing care provision were associated with lower levels of quality of life, compared to continuously not caregiving. Starting and ceasing caregiving were associated with negative and positive changes in quality of life score, respectively, suggesting that cessation of care leads to improvements despite persistent lower overall levels of quality of life. Measures to reduce care burden or time spent providing informal care are likely to improve the quality of life of older people.
Informell och formell vård hos äldre personer i ordinärt boende – förändringar och samspel över tid 2001-2015 i SNAC projektet
Anders Wimo, Ron Handels, Sölve Elmståhl, Cecilia Fagerström, Laura Fratiglioni, Ulrika Isaksson, Ole Larsen, Johan Sanmartin Berglund, Britt-Marie Sjölund, Anders Sköldunger, Maria Wahlberg
(2020)
Anhöriga och andra närståendes informella insatser utgör en stor del av de samlade insatserna hos äldre personer. Resultat från olika undersökningar tyder på att de närståendes insatser är 2-3 gånger så omfattande som den formella vården och omsorgen i det ordinära boendet (i Sverige i huvudsak som hemtjänst) och hos demenssjuka personer är de närståendes insatser än mer omfattande.
Från SNAC projektet har tidigare en vetenskaplig artikel publicerats som analyserar s k baslinjedata från perioden 2001-2003. Förutom att bekräfta att de närståendes insatser är mycket mer omfattande än hemtjänstens, så visades också att det finns risk att felskatta omfattningen om inte befolkningsbaserade data (t ex SNAC) används. Resultatet visade också att närståendes insatser till personer med demenssjukdom också var mer omfattande jämfört med ej demenssjuka.
Socialdepartementet gav SNAC i uppdrag att följa upp resultatet från den studien och
analysera tidstrender i samspelet mellan informell och formell vård hos personer äldre än 80 år i ordinärt boende, med eller utan kognitiv funktionsnedsättning, i SNAC-projektet, något som resulterat i denna rapport.
Informing children of their parent's illness: A systematic review of intervention programs with child outcomes in all health care settings globally from inception to 2019
Charlotte Oja, Tobias Edbom, Anna Nager, Jörgen Månsson, Solvig Ekblad
(2020)
Abstract
Introduction: Children are impacted when parents are ill. This systematic review gives an overview of the current state of research and extracts what children and parents found helpful in the interventions aimed at informing children of their parent's illness.
Methods: This review was registered with PROSPERO and conducted in accordance with PRISMA guidelines. Five health and social science databases were searched from inception to November 2019 to identify original, peer-reviewed articles in English describing effective interventions. The authors selected and reviewed the studies independently, and any inconsistencies were resolved by discussion in face-to-face meetings and emails. A descriptive synthesis of evidence-based concepts from quantitative and qualitative studies was conducted.
Results: A total of 13 892 titles and 144 full-text articles were reviewed with 32 selected for final inclusion, 21 quantitative, 11 qualitative and no mixed-method studies published from 1993 to November 2019. Most of the research was conducted in mental health, including substance abuse (n = 22), but also in cancer care (n = 6) and HIV care (n = 4). Most studies using quantitative method showed a small to moderately positive statistically significant intervention effect on the child's level of internalized symptoms. Content analysis of the results of studies employing qualitative methodology resulted in four concepts important to both children and parents in interventions (increased knowledge, more open communication, new coping strategies and changed feelings) and three additional concepts important to parents (observed changes in their children's behavior, the parent's increased understanding of their own child and the relief of respite).
Conclusions: In the literature there is evidence of mild to moderate positive effects on the child's level of internalized symptoms as well as concepts important to children and parent's worth noting when trying to bridge the still existing knowledge gaps. In further efforts the challenges of implementation as well as adaptation to differing clinical and personal situations appear key to address.
Innan man vet
Elisabet O Klint
(2020)
"Jag drömmer om att jag pratar för oss båda och vi lyssnar tillsammans på det jag berättar. Då ser jag honom le, skratta och gestikulera för att visa sina känslor. Hade jag kunnat göra honom lyckligare, gladare och tryggare? Eller, var han kanske lycklig, och inom sig tacksam, att jag fanns där hela tiden? Vilka av hans handlingar var egentligen hans, och vilka var ett resultat av sjukdom?"
Innan man vet är en finstämd skildring av en kvinnas dilemma i kärlek och i sorg. I denna självbiografiska berättelse får vi följa Elisabet O Klint genom dagboksanteckningar som gestaltar livet såsom det tedde sig. I hopp om att förstå, och förbättra. Gripande åskådliggör hon den livssituation som uppstod när hennes man drabbades av ALS och frontallobsdemens, två livshotande sjukdomar utan botemedel.
Jag. Har. Inga. Ord. Kvar.
Anna Bergfors
(2020)
Denna prosasamling föddes ur mitt behov av tröst.
Mitt behov av att sätta ord på mina känslor utifrån min vuxnes sons missbruk.
Orden tröstar mig och jag hoppas att mina ord även ska ge dig tröst.
Med dessa ord vill jag att du ska förstå att du som anhörig inte är ensam och det finns inget rätt eller fel i hur vi känner och vad vi känner.
Din anhöriges missbruk handlar inte om dig. Även om det såklart påverkar dig och det vi anhöriga måste göra för att leva ett anständigt liv är att förhålla oss till detta, att hitta strategier som funkar för oss.
Vi kommer använda olika strategier men Du har rätt att leva ditt liv som du önskar, du har rätt att inneha huvudrollen i ditt liv.
Denna prosasamling hjälper inte min son ur sitt missbruk men den hjälper mig att andas.
Just Like Any Other Family? Everyday Life Experiences of Mothers of Adults with Severe Mental Illness in Sweden
Piuva K, Brodin H
(2020)
Abstract
This study explores experiences of mothers in Sweden who care for their adult children suffering from severe mental illness. Using 15 interviews with mothers from 40 to 80 years old, the article examines how predominant professional knowledge and sanism constructs the mothers and their children as deviant and what counterstrategies the mothers develop as a response to these experiences of discrimination. The findings show that the mothers' experiences are characterized by endless confrontations with negative attitudes and comments that have forced them to go through painful and prolonged processes of self-accusations for not having given enough love, care, support and help in different stages of their children's life. But the mothers' experiences also reveal important aspects of changes over the life span. As the mothers are ageing, the relationship between them and their children becomes more reciprocal and the ill child may even take the role as family carer.
Leva livet – medan det pågår Ett inspirationsmaterial kring frågor som rör livet och döden för personer med flerfunktionsnedsättning och deras anhöriga
Nationellt kompetenscentrum anhöriga
(2020)
För personer med flerfunktionsnedsättning är livet ofta skört och anhöriga tvingas förhålla sig till tankar om döden på ett mer påtagligt sätt än de flesta andra. I denna skrift har vi på Nationellt kompetenscentrum anhöriga (Nka) samlat berättelser från familjer, yrkesverksamma och specialister med olika erfarenheter avseende detta ämne och sammanställt det i fem kapitel. Nka är ett nationellt kunskapscentrum för anhörigfrågor och anhörigstöd, vars huvudsakliga uppgift är att vara ett expertstöd till kommuner, regioner och enskilda utförare. I uppdraget ingår också att ge kunskapsstöd direkt till föräldrar och andra anhöriga till personer med flerfunktionsnedsättning. Verksamheten startade i januari 2008 och bedrivs på uppdrag av Socialdepartementet via Socialstyrelsen.
Vi hoppas att berättelserna ska bidra till att samtal om livet och döden för personer med flerfunktionsnedsättning ska få en mer naturlig plats inom familjen och dess omgivning, samt i mötet med vården, omsorgen och det övriga samhället.
Livet med lipödem: en utmaning var dag
Bräcke diakoni
(2020)
Boken ingår som en del i ett Arvsfondsprojekt som genomförs av Bräcke Diakoni tillsammans med patientföreningarna SÖF, Svenska Ödemförbundet, LymfS, Lymf- och lipödemföreningen i Stockholms län samt NKA, Nationellt kompetenscentrum för anhöriga.
Förhoppningen med projektet är att behandling av lipödem ska bli erkänd som en rättighet när diagnosen är ställd för den enskilda kvinnan. Då behövs kunskap överallt i vården och den plattform som också framställs i projektet kommer att finnas kvar som en kunskapskälla både för personal som vill erbjuda behandling samt för anhöriga och kvinnor som själva har lipödem.
Measuring next of kin's experience of participation in the care of older people in nursing homes
Westergren, Albert, Behm, Lina, Lindhardt, Tove, Persson, Magnus, Ahlström, Gerd
(2020)
Lack of conceptual clarity and measurement methods have led to underdeveloped efforts to measure experience of participation in care by next of kin to older people in nursing homes. OBJECTIVE: We sought to assess the measurement properties of items aimed at operationalizing participation in care by next of kin, applied in nursing homes. METHODS: A total of 37 items operationalizing participation were administered via a questionnaire to 364 next of kin of older people in nursing homes. Measurement properties were tested with factor analysis and Rasch model analysis. RESULTS: The response rate to the questionnaire was 81% (n = 260). Missing responses per item varied between <0.5% and 10%. The 37 items were found to be two-dimensional, and 19 were deleted based on conceptual reasoning and Rasch model analysis. One dimension measured communication and trust (nine items, reliability 0.87) while the other measured collaboration in care (nine items, reliability 0.91). Items successfully operationalized a quantitative continuum from lower to higher degrees of participation, and were found to generally fit well with the Rasch model requirements, without disordered thresholds or differential item functioning. Total scores could be calculated based on the bifactor subscale structure (reliability 0.92). Older people (≥ 65 years) reported a higher degree of communication and trust and bifactor total scores than younger people (p < 0.05 in both cases). People with a specific contact person experienced a higher degree of participation in the two subscales and the bifactor total score (p < 0.05 in all three instances). CONCLUSION: Psychometric properties revealed satisfactory support for use, in nursing home settings, of the self-reported Next of Kin Participation in Care questionnaire, with a bifactor structure. Additional research is needed to evaluate the effectiveness of the scales' abilities to identify changes after intervention.
Min tur att berätta. Barns röster om att leva med våld
BRIS, Stadsmissioner
(2020)
Flera tusen barn befinner sig varje år
på ett skyddat boende med sin mamma,
på flykt undan det livsfarliga våldet
hemma. Hur påverkas barnets liv av
våldet och av att tvingas bryta upp från
sin vardag? I den här rapporten lyfts
barns egna röster och erfarenheter,
tillsammans med aktuell kunskap.
Rapporten visar hur barns behov och
rättigheter många gånger blir sekundära
när barnet i praktiken blir medföljande
till sin mamma. Det blir tydligt att
rättssäkerheten måste stärkas för barn
som utsätts för våld i hemmet.
Möta den som sörjer - Flera perspektiv på sorg efter dödsfall -
Inger Benkel
(2020)
Sorg efter ett dödsfall är en mångfacetterad process. Det finns mycket som kan inverka på sorgens process och behovet av stöd som den sörjande kan behöva. Boken har ett psykosocialt perspektiv på sorgeprocessen och beskriver olika omständigheter och faktorer som kan påverka den som sörjer.
Boken vänder sig till den som i sitt arbete möter sörjande, som vill lära sig mer om sorg och till den som har någon som sörjer i sin omgivning. Kanske kan den som själv är i en sorgeprocess känna igen sig i bokens beskrivningar av sorg.
När mammor dör: Kvinnor om att mista sin mor
Antologi
(2020)
Tillsammans med 30 andra kvinnor, i olika åldrar, har jag skrivit om hur det är att förlora en mamma. En viktig bok som jag är stolt att vara en del av. "När mammor dör växer det sly överallt" skriver Göran Tunström. Men det behöver inte bli ensamt. Det vill vi förmedla. För mig är det även en hyllning till min mamma Kerstin
Parents with psychosis and their children: Experiences of beardslee’s intervention
Strand, Jennifer; Meyersson, Niklas
(2020)
Abstract
To meet children's needs for information and support when a parent has a mental illness, Beardslee's family intervention was implemented in Swedish psychosis care. The present study aimed to gain understanding of how parents' with psychosis and their children experienced having taken part in Beardslee's family intervention. The study followed COREQ guidelines. Semi‐structured interviews were conducted with 15 participants (8 parents with psychosis and 7 children) who had participated in the family intervention. Data were analysed with content analysis. Results showed that the parents perceived that the intervention had contributed to improved illness knowledge, communication, and understanding in the family. They also appreciated receiving support in finding an age‐adapted way of explaining their illness, but asked for structured follow‐ups in order to maintain communication. However, comparing parents' and children's interviews led to discrepancies in perceptions of the overall benefits of the intervention. In conclusion, parents with psychosis need continual support in talking to their children about their illness. Furthermore, discrepancies between parents' and children's interviews show the importance of multi‐perspective data collection when studying intervention effects
Positive and Negative Impacts of Caring among Adolescents Caring for Grandparents. Results from an Online Survey in Six European Countries and Implications for Future Research
Santini, S. Socci, M. D’Amen, B Di Rosa, M Casu, G. Hlebec, V. Lewis, F. Leu, A. Hoefman, R. Brolin, R. Magnusson; L. Hanson, E.
(2020)
Although up to 8% of European youngsters carry out high-intensity care for a family member, adolescent young carers (AYCs), especially those caring for their grandparents (GrPs), remain an under-researched group. This study aimed at addressing the current knowledge gap by carrying out an online survey in Italy, the Netherlands, Slovenia, Sweden, Switzerland, and the United Kingdom. The analysis included a final sample of 817 AYCs aged 15–17 years old. AYCs of grandparents (GrPs) were compared to AYCs of other care recipients (OCRs), in order to identify any difference in positive and negative caregiving outcomes and exposure factors between the two groups. Linear or logistic regression models were built, and multivariate analyses were repeated, including a fixed effect on the country variable. AYCs of GrPs experienced more positive caregiving outcomes than AYCs of OCRs across all six countries. Being female or non-binary, and having a migration background, were associated with more negative outcomes, regardless of the relationship with the care recipient. Further research on intergenerational caregiving outcomes is recommended for shaping measures and policies, which preserve the intergenerational emotional bonds, whilst protecting AYCs from inappropriate responsibilities, undermining their mental health and well-being.
Reflections A Story of Hope, Healing, Facing Fears, and Finding Purpose
Hobbs Brian, Hobbs Fia
(2020)
Gives hope and inspiration to live a full life despite the adversity of cancer Teaches readers how to overcome fears Shows the importance of finding one's passion and purpose Saying goodbye and putting things in order before dying Coming to terms with mortality Finding out what truly matters in life
Review and selection of online resources for carers of frail adults or older people in five European countries: a mixed-methods study
Papa, R, Efthymious, A, Lamura, G, Piccinini, F, Onorati, G, Papastavrou, E, Tsitsi, T, Casu, G, Boccaletti, L, Manattini, A, Seneca, R, Vaz de Carvalho, C, Durão, R, Barbabella, F, Andréasson, F, Magnusson, L, Hanson, E
(2020)
ABSTRACT
Background: Informal carers have a crucial role in the care of older people, but they are at risk of social isolation and psychological exhaustion. Web-based services like apps and websites are increasingly used to support informal carers in addressing some of their needs and tasks, such as health monitoring of their loved ones, information and communication, and stress management. Despite the growing number of available solutions, the lack of knowledge or skills of carers about the solutions often prevent their usage.
Objective: This study aimed to review and select apps and websites offering functionalities useful for informal carers of frail adults or older people in 5 European countries (Cyprus, Greece, Italy, Portugal, and Sweden).
Methods: A systematic online search was conducted from January 2017 to mid-March 2017 using selected keywords, followed by an assessment based on a set of commonly agreed criteria and standardized tools. Selected resources were rated and classified in terms of scope. Focus groups with informal carers were conducted to validate the list and the classification of resources. The activities were conducted in parallel in the participating countries using common protocols and guidelines, a standardization process, and scheduled group discussions.
Results: From a total of 406 eligible resources retrieved, 138 apps and 86 websites met the inclusion criteria. Half of the selected resources (109/224, 48.7%) were disease-specific, and the remaining resources included information and utilities on a variety of themes. Only 38 resources (38/224, 17.0%) were devoted specifically to carers, addressing the management of health disturbances and diseases of the care recipient and focusing primarily on neurodegenerative diseases. Focus groups with the carers showed that almost all participants had no previous knowledge of any resource specifically targeting carers, even if interest was expressed towards carer-focused resources. The main barriers for using the resources were low digital skills of the carers and reliability of health-related apps and websites. Results of the focus groups led to a new taxonomy of the resources, comprising 4 categories: carer's wellbeing, managing health and diseases of the care recipient, useful contacts, and technologies for eldercare.
Conclusions: The review process allowed the identification of online resources of good quality. However, these resources are still scarce due to a lack of reliability and usability that prevent users from properly benefiting from most of the resources. The involvement of end users provided added value to the resource classification and highlighted the gap between the potential benefits from using information and communication technologies and the real use of online resources by carers.
Spousal care-giving arrangements in Europe. The role of gender, socio-economic status and the welfare state
Ariane Bertogg, Susanne Strauss
(2020)
Abstract
Spouses (and partners) are the most important source of care in old age. Informal care for frail spouses is provided by both sexes and across all socio-economic backgrounds and welfare policy contexts. There are, however, interesting differences as to whether spouses care alone, receive informal support from other family members or formal support from professional helpers, or outsource the care of their spouse completely. The present article contributes to the literature by differentiating between solo spousal care-giving and shared or outsourced care-giving arrangements, as well as between formal and informal care support. Moreover, we show how care-giving arrangements vary with gender, socio-economic status and welfare policy. Adding to previous research, we compare 17 countries and their expenditures on two elder-care schemes: Cash-for-Care and Care-in-Kind. The empirical analyses draw on the most recent wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) data from 2015. Our results show that men have a higher propensity to share care-giving than women, albeit only with informal supporters. As expected, welfare policy plays a role insofar as higher expenditure on Cash-for-Care schemes encourage informally outsourced care-giving arrangements, whereas Care-in-Kind reduce the likelihood for informally shared or outsourced care-giving arrangements. Moreover, the influence of these welfare policy measures differs between individuals of different socio-economic status but not between men and women.
Statistik om boendeinsatser och anhörigstöd 2019
Socialstyrelsen
(2020)
Efter en längre tids ökning av antalet personer som har fått boendeinsatser
av socialtjänsten så har det skett en stabilisering de senaste åren. Befolkningsmässigt större kommuner gav fler insatser per capita, jämfört med
mindre.
Stärkt stöd till barn som anhöriga Slutrapport från regeringsuppdrag 2017–2020
Socialstyrelsen
(2020)
Sammanfattning
En hög andel barn har någon gång under sin uppväxt i sin familj missbruk/beroende, psykisk ohälsa eller funktionsnedsättning, våld, allvarlig sjukdom eller skada eller någon som avlider. Ofta är svårigheterna överlappande. Det är ett grundläggande folkhälsoarbete att genom adekvat stöd förebygga de väl dokumenterade riskerna för negativa konsekvenser av en sådan uppväxt, i barnens vardag här och nu och för deras framtid. Ett omfattande utvecklingsarbete har utifrån regeringsuppdragen bedrivits under hela perioden 2011–2020, i nära samarbete med andra nationella och regionala aktörer. Steg har tagits närmare målet att barn inte ska skadas av föräldrars missbruk och beroende och att psykisk ohälsa av familjerelaterade orsaker minskar hos barn och unga. Detta har skett bland annat genom att stödja både hälso- och sjukvård och socialtjänst i att genom ökad kunskap och skapandet av hållbara strukturer tillämpa ett barn-, föräldraskaps- och familjeperspektiv i arbetet med dessa familjer. Stödet har bestått i framtagande och publicering av kunskapssammanfattningar och olika former av webbstöd, spridande av verksamma arbetssätt, stöd till utvecklingsarbeten samt anordnande av konferenser och lärande nätverk. Detta påverkans- och utvecklingsarbete är viktiga insatser för att minska de påverkbara hälsoklyftorna i samhället. Arbetet är också en utmaning som kräver långsiktighet och kontinuerligt stöd för implementering. Fortsatta kontinuerliga insatser behövs för att alla som i sitt arbete möter föräldrar med egna svårigheter uppmärksammar barnens situation och ger dem information, råd och stöd efter behov. Medvetenheten om professionens ansvar att förhålla sig till patienter, brukare och klienter som föräldrar, och till deras barn som anhöriga och rättighetsbärare, behöver öka inom såväl hälso- och sjukvården som socialtjänsten. Barnkonventionen som lag stärker arbetet, men kräver fortsatta insatser för efterlevnad i praktiken. I denna redovisning lyfts därför behovet av att ett fortsatt nationellt stöd inom området behövs. Det stödet omfattar fortsatt arbete med uppföljning, utveckling av ett samordnat familjeorienterat arbetssätt inom socialtjänsten och hälso- och sjukvården, stödstrukturer för barn i akuta situationer, samlad kompetens och ansvar för barn som föds med skador till följd av exponering av alkohol under fosterlivet samt nationellt samordning inom flera områden, exempelvis i arbetet med våld mot barn. Det är angeläget att den kommande ANDT-strategin från 2021 och framåt fortsatt särskilt lyfter behovet av satsningar på barn och stöd i föräldraskap för att se till barns behov av en trygg uppväxt här och nu samt förebygga missbruk och psykisk ohälsa i nästa generation.
The family talk intervention for families when a parent is cared for in palliative care – potential effects from minor children's perspectives
Eklund, Rakel; Alvariza, Anette; Kreicbergs, Ulrika; Jalmsell, Li; Lövgren, Malin
(2020)
Abstract:
Background: Children show long-term psychological distress if family communication and illness-related information are poor during and after a parent's illness and death. Few psychosocial interventions for families with minor children living with a parent who has a life-threatening illness have been evaluated rigorously. Even fewer interventions have been family-centered. One exception is the Family Talk Intervention (FTI), which has shown promising results regarding increased illness-related knowledge and improved family communication. However, FTI has not yet been evaluated in palliative care. This study therefore aimed to explore the potential effects of FTI from the perspectives of minor children whose parent is cared for in specialized palliative home care. Methods: This pilot intervention study involves questionnaire and interview data collected from children after participation in FTI. Families were recruited from two specialized palliative home care units. To be included, families must include one parent with life-threatening illness, at least one child aged 6–19 years, and understand and speak Swedish. Twenty families with a total of 34 children participated in FTI; 23 children answered the questionnaire, and 22 were interviewed after participation. Results: The children reported that FTI increased their knowledge about their parents' illness. They said the interventionist helped them to handle school-related problems, establish professional counselling, and find strength to maintain everyday life. Children aged 8–12 reported that talking with their parents became easier after FTI, whereas communication was unchanged for teenagers and between siblings. Children also reported having been helped to prepare for the future, and that they benefitted from advice about how to maintain everyday life and minimize conflicts within the family. Conclusions: Children who participated in FTI reported that it was helpful in many ways, providing illness-related information and improving family communication when a parent has a life-threatening illness. Other potential positive effects reported by the children were that FTI facilitated their preparation for the future, decreased family conflicts, and started to build up resilience.
The family talk intervention for families when a parent is cared for in palliative care – potential effects from minor children's perspectives
Eklund, Rakel; Alvariza, Anette; Kreicbergs, Ulrika; Jalmsell, Li; Lövgren, Malin.
(2020)
Abstract:
Background: Children show long-term psychological distress if family communication and illness-related information are poor during and after a parent's illness and death. Few psychosocial interventions for families with minor children living with a parent who has a life-threatening illness have been evaluated rigorously. Even fewer interventions have been family-centered. One exception is the Family Talk Intervention (FTI), which has shown promising results regarding increased illness-related knowledge and improved family communication. However, FTI has not yet been evaluated in palliative care. This study therefore aimed to explore the potential effects of FTI from the perspectives of minor children whose parent is cared for in specialized palliative home care. Methods: This pilot intervention study involves questionnaire and interview data collected from children after participation in FTI. Families were recruited from two specialized palliative home care units. To be included, families must include one parent with life-threatening illness, at least one child aged 6–19 years, and understand and speak Swedish. Twenty families with a total of 34 children participated in FTI; 23 children answered the questionnaire, and 22 were interviewed after participation. Results: The children reported that FTI increased their knowledge about their parents' illness. They said the interventionist helped them to handle school-related problems, establish professional counselling, and find strength to maintain everyday life. Children aged 8–12 reported that talking with their parents became easier after FTI, whereas communication was unchanged for teenagers and between siblings. Children also reported having been helped to prepare for the future, and that they benefitted from advice about how to maintain everyday life and minimize conflicts within the family. Conclusions: Children who participated in FTI reported that it was helpful in many ways, providing illness-related information and improving family communication when a parent has a life-threatening illness. Other potential positive effects reported by the children were that FTI facilitated their preparation for the future, decreased family conflicts, and started to build up resilience.
The Usage of Digital Resources by Swedish Suicide Bereaved in Their Grief Work: A Survey Study
Westerlund, Michael Uv
(2020)
Abstract:
This study examined Swedish suicide bereaved individuals' use of different resources in their grief work and how they value these resources. The material consisted of a web-based survey, which was analyzed with quantitative methods. The results showed that the psychosocial ill-health was severe among the suicide bereaved participants and that a majority used digital resources in their grief work. The propensity to engage in online support groups or memorial websites was not predicted by the severity of psychosocial consequences following the suicide. However, multiple regressions showed that higher online support group activity predicted more satisfaction with current psychosocial health, while memorial websites seemed to have the opposite effect. This study not only indicates that some digital resources, for example, online support groups, may be an effective way of coping with grief related to suicide loss, but also suggests that memorial websites may increase rumination and in this way cause emotional distress
Upplevelser av att vara anhörig till en närstående med långvarig sjukdom, långvarigt hjälpbehov, akut sjukdom eller kritiskt tillstånd
Olivia Hellberg, Rebecca Kammerland
(2020)
En integrativ forskningsöversikt om dessa anhörigas psykosociala behov samt hur hälso- och sjukvårdskuratorer kan arbeta för att stödja anhöriga som de möter.
Examensarbete Kandidatnivå
Sammanfattning
Syftet är att via en integrativ forskningsöversikt sammanställa forskning om anhöriga till närstående med långvarig sjukdom, långvarigt hjälpbehov, akut sjukdom eller kritiskt tillstånd, deras psykosociala behov och behov av stöd. Vidare syftar studien till att undersöka på vilket sätt hälso- och sjukhuskuratorer kan möta dessa anhörigas behov. Forskningsöversikten består av 20 artiklar som är av kvantitativ, kvalitativ och mixad metod. Artiklarna har analyserats med tematisk analys för att därefter analysera framkommande teman utifrån copingteori och professionsteori. Resultaten visar att anhörigas personliga uppoffringar kan få konsekvenser på hälsa, ekonomi och relationer. Som en psykosocial konsekvens av att hjälpa en närstående upplever många anhöriga stress, ångest och depression. Anhöriga behöver stöd som är anpassat efter deras individuella behov. Olika former av stöd efterfrågas: emotionellt-, instrumentellt- och informativt stöd. Det är viktigt att kuratorer i hälso- och sjukvården uppmärksammar anhöriga, har kunskap och kan möta anhörigas individuella behov. Slutsatserna är att det finns många generella aspekter av att vara anhörig och det mest framträdande resultatet är anhörigas behov av information. Individuellt stöd, stöd i rätt tid och adekvat information är viktigt för att främja anhörigas hälsa och välbefinnande.
Välkommen till helvetet
Nanna Helsén, Stina Helsén
(2020)
Det hade gått så snabbt, så oerhört snabbt. Innan jag ens hade hunnit reflektera över det hade jag tappat de där första kilona. Och all kontroll. Och plötsligt rasade allt.?
Förloppet är hastigt när 15-åriga Nanna insjuknar i anorexi, på bara några veckor rasar hon i vikt och läggs in för akut vård. Hennes tillstånd är livshotande och livet vänds uppochner för hennes familj, föräldrarna ständigt vid hennes sida. Nanna plågas av grav ångest och är helt i sjukdomens våld. Hennes enda fokus är att låta bli att äta, sluta existera.
Hemma är 13-åriga lillasystern Stina ledsen och arg. Det som tidigare var en nära syskonrelation upphör tvärt. Hon får plötsligt mer frihet än hon önskar och kämpar för att ha en vardag när allt handlar om sjukdom. Stina har heller ingen lust att spela den lättsamma dottern precis när det råkar passa föräldrarna.
Nanna och Stina, idag vuxna, berättar öppet och rättframt om ett år med anorexin och ångesten ur sina olika perspektiv. Sjukdomen påverkar i hög grad anhöriga. Välkommen till helvetet är en drabbande skildring av just anorexi, men mycket är aktuellt även för andra typer av psykisk sjukdom.
Systrarna Nanna Helsén, född 1989, och Stina Helsén, född 1991, är uppvuxna i Stockholm. Välkommen till helvetet är deras första bok. Till vardags arbetar Nanna med affärsutveckling och Stina är lärare.
Family members' expressions of dignity in palliative care: a qualitative study
Anna Sandgren, Lena Axelsson, Tove Bylund-Grenklo, Eva Benzein
(2020)
Abstract
Living and dying with dignity are fundamental values in palliative care, not only for the patient but also for family members. Although dignity has been studied from the different perspectives of patients in need of palliative care and their family members, family members' thoughts and feelings of dignity have not been given sufficient attention. Therefore, the aim was to describe family members' expressions of dignity in palliative care. The study had a qualitative design; semi-structured individual interviews were conducted with 15 family members of patients in palliative care in a county with a specialist palliative advisory team. Data were analysed using inductive content analysis. The results showed that family members' expressions of dignity are multifaceted and complex. For family members in palliative care, dignity means living as a respected human being in relation to oneself and others. Dignity also includes being able to maintain one's identity, feeling connected to significant others, and being comfortable with the new situation. Two contextual aspects affect family members' dignity: the two-headed paradox and reciprocal impact. The two-headed paradox means that family members want to stay close to and care for the ill person, at the same time want to escape the situation, but when they escape, they want to be close again. Reciprocal impact means that family members' feelings and experiences of the situation are closely intertwined with those of the ill person. These results may increase healthcare professionals' understanding and be used in dignified care practices that do not threaten, but instead aim to preserve family members' sense of dignity.
"Childlessness at the end of life: evidence from rural Wales."
Wenger, C. G.
(2009)
ABSTRACT After the spouse, children are the most likely source of informal support for an older person when the frailties of advanced old age create the need for help. Childlessness may thus be seen as particularly a problem for older people. In general, to compensate for the lack of children, childless people develop closer relationships with available next-of-kin and non-kin. Despite this, in times of need they are likely to find themselves with inadequate informal support. Using data from the Bangor Longitudinal Study of Ageing, this article explores the consequences of childlessness among persons aged 85 years or more living in rural Wales. The results indicate that by the time they reach old age, childless people have adapted to their situation and developed expectations consistent with being childfree. They have closer relationships with collateral kin, friendships are important and a high value is placed on independence. Nevertheless, unless they die suddenly or after a short acute illness, almost all of them enter residential care or a long-stay hospital at the end of their lives. It is also shown that the situation of childless people varies greatly and depends on several factors, particularly marital status, gender, social and financial capital, and on the person's earlier investment in the strengthening of next-of-kin and non-kin networks.
Activitybased intervention for multiple-disabled visually impaired people
Tellevik JM, Elmerskog B.
(2009)
The article describes assessment, planning and training for people with multiple disabilities and visual impairment (MDVI). The ImPAct MDVI project, an EU Comenius programme, addressed concerns expressed by teachers of children and young people with MDVI as to how they are expected to integrate the diverse curriculum elements and particular skills they have been taught into a meaningful educational process. The aim of the project was to develop a holistic teaching approach, based on activities, participation and involvement in real life situations, aiming at involving people with MDVI in their social and physical context. This was achieved by applying a 5-step working model (Tellevik and Elmerskog, 2001), which sought to support the development of assessment and planning intervention strategies.
Do Young Carers Deserve Justice? Young Caring in the Context of Illness
Sahoo, R., & Suar, D.
(2009)
Though there is a lot of discussion on carers' issue, young caring is still ignored and many facts remain unknown to us, which need to be revealed. Children or young people who provide continuous care for ill or disabled parents, siblings or any other family members are young carers. This raises several issues related to justice in the context of the young. Caring has its rewards and difficulties. This paper reviews the literature on informal caregiving for ill family members in order to explore caring concept in children's mind and how young caring varies with age, sex, types of illness and different family situations from the perspective of children and parents. Causes and consequences of young caring have been explored. Agenda for future research is suggested.
Families under the microscope: parallels between the young carers debate of the 1990s and the transformation of childhood in the late nineteenth century
Olsen, R.
(2009)
Existing analysis and discussion about young carers—children caring for ill or disabled family members—has been limited in scope, concentrating on narrow policy and service issues. In this paper, I attempt to introduce a more historical perspective to these debates, by comparing responses to the issue of young caring in the 1990s to resistance encountered in the implementation of child labour and education reforms towards the end of the nineteenth century. I discuss the parallel ways in which the quality of childhood for some children became problematised without sufficient recognition of the limited choices that some families face. Copyright © 2000 John Wiley & Sons, Ltd.
Fokusgrupp Växelvård . Utveckling av anhörigstöd.
Gretener, B., Malmström, B., & Pettersson, K.
(2009)
Folkhälsorapport. Artikelnr 2009-126-71.
Socialstyrelsen
(2009)
Folkhälsorapport 2009 är den sjunde nationella rapporten och redovisar hälsans utveckling i olika befolkningsgrupper och hur den påverkats av levnadsvanor och omgivningsfaktorer. Under de senaste decennierna har hälsan förbättrats vilket avspeglar sig i att medellivslängden fortsätter att öka och ökar mer bland män än bland kvinnor. Det har också funnits en ogynnsam utveckling av folkhälsan, olika symtom på nedsatt psykiskt välbefinnande ökade kraftigt under 1990-talet utom bland de äldsta. Under 2000-talet tycks dock denna utveckling ha brutits utom bland ungdomar. De senaste uppgifterna som finns om hur befolkningen upplever sitt hälsotillstånd är från 2005 och speglar ett samhälle under högkonjunktur. Hälsotillståndet kan mycket väl ha försämrats sedan dess med tanke på den ekonomiska kris som gjort sig gällande under sista halvåret.
Medellivslängden ökar mest bland män och högutbildade
Den främsta orsaken till den ökande medellivslängden är att allt färre insjuknar i hjärt- och kärlsjukdomar och bland dem som insjuknar har dödligheten minskat kraftigt. Risken att dö i hjärtinfarkt har nära nog halverats de senaste 20 åren och risken att dö i stroke har minskat med en tredjedel. Minskad rökning samt lägre blodfetter och blodtryck gör att färre insjuknar. Bättre behandlingsmetoder har bidragit till att risken att dö i hjärtinfarkt eller stroke minskat dramatiskt för både kvinnor och män. Cancerdödligheten visar inte samma positiva utveckling: lungcancer minskar bland män men ökar alltjämt bland kvinnor och minskningen av bröstcancerdödligheten är förhållandevis liten. Skillnader i förväntad medellivslängd mellan personer med olika lång utbildning har ökat under hela 1990-talet, och fortsätter att öka under 2000- talet framför allt bland kvinnor. Det är framför allt sociala skillnader i cancerdödlighet som ökar bland kvinnor.
Förändrade levnadsvanor
Bland barn ökade övervikten kraftigt från 1980-talet till 2000-talet men nu tycks ökningen plana ut. Idag är 15-20 procent av alla barn överviktiga och 3-5 procent är feta. Barns matvanor har förbättrats, fler äter frukt och grönsaker medan konsumtionen av läsk och godis har sjunkit markant under senare år. Bland ungdomar i årskurs 9 minskar andelen rökare liksom alkoholkonsumtionen och användningen av narkotika. Ökningen av andelen vuxna med övervikt och fetma var störst på 1990-talet och ser nu ut att avstanna. I åldrarna 16-84 år är hälften av männen och nästan 40 procent av kvinnorna överviktiga eller feta. Fetma förkortar i genomsnitt livet med 6-7 år. De allra senaste åren förefaller energiintaget via maten minska för första gången på decennier. Alkoholkonsumtionen har ökat sedan början av 1990-talet och högst alkoholkonsumtion har män i åldern 20-24 år. Den alkoholrelaterade dödligheten minskar bland män i åldern 25-64 år och ökar i åldrarna över pensionsåldern. Bland kvinnor ökar alkoholdödligheten i åldrarna 65-74 år medan den varit i stort sett oförändrad i åldern 45-64 år. Narkotikadödligheten minskade på 2000-talet efter att ha ökat dramatiskt under decennier.
Hälsoutvecklingen bland ungdomar oroande
Flera olika indikatorer pekar på att psykisk ohälsa är särskilt vanligt bland yngre kvinnor men att den ökar bland båda könen. Andelen självmordsförsök ökar kraftigt bland unga kvinnor, och allt fler unga vårdas på sjukhus för depression eller ångest och för alkoholförgiftning. Under sista åren har dödligheten bland unga män ökat något till följd av en liten ökning i flera dödsorsaker, nämligen skador, alkoholrelaterade dödsorsaker och möjligen även självmord.
Hälsan är ojämnt fördelad
Hjärt- och kärlsjukdomar och diabetes är vanlig are bland lågutbildade.
Rökning minskar i alla grupper utom bland kvinnor med enbart grundskoleutbildning.
Överlevnad i bröstcancer är lägre bland kvinnor med lägre utbildning.
Svår värk och dåligt allmänt hälsotillstånd är betydligt vanligare hos arbetare än hos tjänstemän.
Ensamstående kvinnor med barn har mer besvär av värk, oftare nedsatt psykiskt välbefinnande, röker mer och överviktiga är vanligare.
Astma och födoämnesallergier är vanligare bland barn till föräldrar i lägre socialgrupper. De får dessutom allvarligare symtom av sin astma än barn i högre socialgrupper.
Tandhälsan är betydligt sämre hos socioekonomiskt svaga grupper. Många anser sig inte ha råd med den tandvård de behöver.
Ensamstående kvinnor är en våldsutsatt grupp och 15 procent av alla ensamstående kvinnor med små barn har utsatts för våld i hemmet.
Risken för våld är större bland kvinnor med fysiska och psykiska funktionshinder samt äldre med få sociala kontakter.
Våld och skador drabbar oftare barn i familjer med låga inkomster.
Det är vanligare bland lågutbildade att äldre vårdas av sina anhöriga. De som har högre utbildning köper i större utsträckning dessa tjänster.
Vissa grupper avstår oftare än andra från att hämta ut sina läkemedel: ensamstående med barn, arbetslösa, personer med sjuk- och aktivitetsersättning, personer med ekonomiskt bistånd och de som har höga avgifter för läkemedel. Ensamstående kvinnor med barn avstår i tre gånger så hög utsträckning som befolkningen i sin helhet.
Föräldrastöd i Södertälje : samt tidig upptäckt av barn med normbrytande beteende : kartläggning 2008
Jonsson, E.
(2009)
apporten utgör en kartläggning av Södertäljes utbud av föräldrastöd och av det arbete som görs i kommunen för att tidigt upptäcka barn med normbrytande beteende. Resultatet visar att det finns flera områden som kommunen både kan och behöver arbeta vidare med.
Interventions for Intimate Partner Violence: Review and Implications for Evidence-Based Practice
Stover, C. S., Meadows, A. L., & Kaufman, J.
(2009)
The objective of this article was to survey available intimate partner violence (IPV) treatment studies with (a) randomized case assignment, and (b) at least 20 participants per group. Studies were classified into 4 categories according to primary treatment focus: perpetrator, victim, couples, or child-witness interventions. The results suggest that extant interventions have limited effect on repeat violence, with most treatments reporting minimal benefit above arrest alone. There is a lack of research evidence for the effectiveness of the most common treatments provided for victims and perpetrators of IPV, including the Duluth model for perpetrators and shelter–advocacy approaches for victims. Rates of recidivism in most perpetrator- and partner-focused treatments are approximately 30% within 6 months, regardless of intervention strategy used. Couples treatment approaches that simultaneously address problems with substance abuse and aggression yield the lowest recidivism rates, and manualized child trauma treatments are effective in reducing child symptoms secondary to IPV. This review shows the benefit of integrating empirically validated substance abuse and trauma treatments into IPV interventions and highlights the need for more work in this area. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Interventions for Intimate Partner Violence: Review and Implications for Evidence-Based Practice (PDF Download Available). Available from: https://www.researchgate.net/publication/232566911_Interventions_for_Intimate_Partner_Violence_Review_and_Implications_for_Evidence-Based_Practice [accessed Jan 3, 2016].
Loss and grief in patients with Schizophrenia: Onliving in another world
Mauritz M, Van Meijel B.
(2009)
AIM:
Schizophrenia enormously impacts the lives of the patients who have this psychiatric disorder. This study addresses the lived experience of grief in schizophrenia.
METHOD:
A qualitative study based on the grounded theory was designed. Ten patients were interviewed in depth on their feelings of loss and ways of coping.
RESULTS:
All respondents experienced significant feelings of loss. Internal and external losses were distinguished. Respondents dealt with their losses by accepting their diagnosis and treatment, identifying with other patients, learning about schizophrenia, and searching for meaning.
DISCUSSION:
Respondents were able to identify their significant losses and verbalize the accompanied feelings. They went through an intensive grieving process that to a certain extent led to coming to terms. During the interviews, the presence of grief was evident, whereas clinical depression was excluded.
CLINICAL IMPLICATIONS:
Interventions may be improved by the following factors: (a) optimal assessment and treatment of symptoms; (b) adequate information about symptoms, treatment and its effects, and prognosis; (c) opportunities to identify with other patients; (d) strengthening of social support; and (e) a relationship of trust with care providers based on an accepting attitude.
Places social relations and activities in the everyday lives of folder adults with psychiatric disabilities: an interview study
Nordström, M., Dunér, E., Olin, A., & Wijk, H.
(2009)
BACKGROUND:
Knowledge about the daily life of older adults with psychiatric disabilities is extremely limited, especially from the standpoint of the individual. The overall aim of this study was to describe and analyze the ways in which older adults with a psychiatric disability experience places, social relations and activities in different arenas of their everyday lives.
METHOD:
Twelve older adults (>55 years) with a psychiatric disability were interviewed either once or twice, using different interview techniques. The first interviews were semi-structured and the second were in-depth interviews guided by a site-map. The interview texts were analyzed using qualitative content analysis, proceeding from open to focused coding in several steps.
RESULTS:
Although the respondents spent most of their time in their own homes, some also spent a lot of time at day-care centers and other similar places. The amount of time spent in places in the public arena varied a great deal. The interviewees' experiences of the places, relationships and activities in their everyday lives can be related to aspects of freedom and coercion, internal and external structure, and relationships and support.
CONCLUSION:
The provision of a varied range of services and support in diverse settings in order to make these accessible to persons of different ages and needs is an important challenge for welfare politics.
Prevalence and correlates of adult attentiondeficit hyperactivity disorder: meta-analysis
Simon, V., Czobor, P., Balint, S., Meszaros, A., & Bitter, I.
(2009)
BACKGROUND:
In spite of the growing literature about adult attention-deficit hyperactivity disorder (ADHD), relatively little is known about the prevalence and correlates of this disorder.
AIMS:
To estimate the prevalence of adult ADHD and to identify its demographic correlates using meta-regression analysis.
METHOD:
We used the MEDLINE, PsycLit and EMBASE databases as well as hand-searching to find relevant publications.
RESULTS:
The pooled prevalence of adult ADHD was 2.5% (95% CI 2.1-3.1). Gender and mean age, interacting with each other, were significantly related to prevalence of ADHD. Meta-regression analysis indicated that the proportion of participants with ADHD decreased with age when men and women were equally represented in the sample.
CONCLUSIONS:
Prevalence of ADHD in adults declines with age in the general population. We think, however, that the unclear validity of DSM-IV diagnostic criteria for this condition can lead to reduced prevalence rates by underestimation of the prevalence of adult ADHD.
Resilience Among Children Exposed to Domestic Violence: The Role of Risk and Protective Factors
Martinez-Torteya, C., Bogat, G. A., von Eye, A., & Levendosky, A. A.
(2009)
Individual and family characteristics that predict resilience among children exposed to domestic violence (DV) were examined. Mother-child dyads (n = 190) were assessed when the children were 2, 3, and 4 years of age. DV-exposed children were 3.7 times more likely than nonexposed children to develop internalizing or externalizing problems. However, 54% of DV-exposed children maintained positive adaptation and were characterized by easy temperament (odds ratio [OR] = .39, d = .52) and nondepressed mothers (OR = 1.14, d = .07), as compared to their nonresilient counterparts. Chronic DV was associated with maternal depression, difficult child temperament, and internalizing or externalizing symptoms. Results underscore heterogeneous outcomes among DV-exposed children and the influence of individual and family characteristics on children's adaptation.
The relative efficacy of two levels of a primary care intervention for family members affected by the addiction problem of a close relative: a randomized trial
Copello A, Templeton L, Orford J, Velleman R, Patel A, Moore L, et al.
(2009)
OBJECTIVES:
A randomized trial to compare two levels of an intervention (full versus brief) for use by primary health-care professionals with family members affected by the problematic drug or alcohol use of a close relative.
DESIGN:
A prospective cluster randomized comparative trial of the two interventions.
SETTING:
A total of 136 primary care practices in two study areas within the West Midlands and the South West regions of England.
PARTICIPANTS:
A total of 143 family members affected by the alcohol or drug problem of a relative were recruited into the study by primary health-care professionals. All recruited family members were seen on at least one occasion by the professional delivering the intervention and 129 (90 %) were followed-up at 12 weeks.
MAIN OUTCOME MEASURES:
Two validated and standardized self-completion questionnaires measuring physical and psychological symptoms of stress (Symptom Rating Test) and behavioural coping (Coping Questionnaire) experienced by the family members. It was predicted that the full intervention would show increased reduction in both symptoms and coping when compared to the brief intervention.
RESULTS:
The primary analysis adjusted for clustering, baseline symptoms and stratifying variables (location and professional group) showed that there were no significant differences between the two trial arms. The symptom score at follow-up was 0.23 [95% confidence interval (CI): -3.65, +4.06] higher in the full intervention arm than in the brief intervention arm, and the coping score at follow-up was 0.12 (95% CI: -5.12, +5.36) higher in the full intervention arm than in the brief intervention arm.
CONCLUSIONS:
A well-constructed self-help manual delivered by a primary care professional may be as effective for family members as several face-to-face sessions with the professional.
"You don't want to burden them": older adults' views on family involvement in care
Cahill, E., Lewis, L. M., Barg, F. K., & Bogner, H. R.
(2009)
Burden emerged as an important concept among older adults in a study of how older adults interact with their families around care. The authors conducted 50 semistructured interviews with adults older than the age of 65 years and a spouse or adult child. The sample was stratified by ethnicity thus giving the opportunity to explore both ethnic similarities and differences. Older adults who expressed the concept of burden were more likely to be White compared with older adults who did not express burden. Older respondents discussed burden in relation to not wanting to complicate the busy lives of adult children, guilt about health problems, and concern that children were overly worried about the care of their older family member. The expression and meaning of burden differed according to ethnicity. This study has implications for practice and policies to meet the needs of families and promote the independence of older persons.
“Role of depressive symptoms and comorbid chronic disease on health-related quality of life among community-dwelling older adults”.
Gallegos-Carrillo, K., Garcia-Pena, C., Mudgal, J., Romero, X., Durán-Arenas, L., & Salmeròn, J.
(2009)
OBJECTIVE:
This study examined the influence of depressive symptoms on health-related quality of life (HRQOL) among community-dwelling older adults suffering from various categories of chronic comorbidity.
METHODS:
A population-based survey in adults aged 60 years or more was conducted within a random sample of 1085 beneficiaries of the Mexican Institute of Social Security in Mexico City. Depressive symptoms were evaluated with the 15-item Geriatric Depression Scale, and chronic comorbidity was determined with self-reports concerning prior medical diagnoses and the HRQOL Short Form-36 health survey. We carried out a stratified analysis by comorbidity category, evaluating the impact of depressive symptoms on HRQOL through an analysis of variance and modeling the independent association of depression symptoms with HRQOL using multiple linear regression analyses adjusted for comorbidity and other covariables.
RESULTS:
HRQOL scores were low in the presence of depressive symptoms, while their impact increased when chronic diseases were also present. The group with the poorest HRQOL was older adults suffering from both depressive symptoms and two or more chronic diseases (P<.05). The stratified analysis by comorbidity and multivariate analysis, adjusted for covariables, indicated that depressive symptoms and comorbidity had cumulative negative effects on HRQOL.
CONCLUSION:
The HRQOL of older adults deteriorated when depressive symptoms were present and decreased even further with the simultaneous occurrence of chronic illnesses. Identifying depression symptoms-either alone or along with chronic conditions-is crucial for implementation of measures aimed at improving elderly people's HRQOL.
”Småbarnstiden tar ju aldrig slut.” Hur parrelationen påverkas av att vara förälder till ett barn med funktionsnedsättning inom autismspektrat
Högberg, Anette
(2009)
Denna rapport redovisar en undersökning av hur män och kvinnor upplever att parrelationen har påverkats av att de fått ett barn med funktionsnedsättning inom autismspektrum. Studien tar fasta på vad detta kan innebära för familjen i stort, för parrelationen och för självbilden. Rollfördelning och beroende behandlas liksom relationer till släkt, vänner och nätverk. Även hur kompetens och stolthet kan växa fram. Området är outforskat, undersökningen har därför fått en explorativ inriktning. Metoden är halvstrukturerade intervjuer.
A conceptual framework of outcomes for caregivers of assistive technology users
Demers, L., Fuhrer, M. J., Jutai, J., Lenker, J., Depa, M., & De Ruyter, F.
(2009)
Abstract
OBJECTIVE: To develop and validate the content of a conceptual framework concerning outcomes for caregivers whose recipients are assistive technology users.
DESIGN: The study was designed in four stages. First, a list of potential key variables relevant to the caregivers of assistive technology users was generated from a review of the existing literature and semistructured interviews with caregivers. Second, the variables were analyzed, regrouped, and partitioned, using a conceptual mapping approach. Third, the key areas were anchored in a general stress model of caregiving. Finally, the judgments of rehabilitation experts were used to evaluate the conceptual framework.
RESULTS: An important result of this study is the identification of a complex set of variables that need to be considered when examining the experience of caregivers of assistive technology users. Stressors, such as types of assistance, number of tasks, and physical effort, are predominant contributors to caregiver outcomes along with caregivers' personal resources acting as mediating factors (intervening variables) and assistive technology acting as a key moderating factor (effect modifier variable).
CONCLUSIONS: Recipients' use of assistive technology can enhance caregivers' well being because of its potential for alleviating a number of stressors associated with caregiving. Viewed as a whole, this work demonstrates that the assistive technology experience of caregivers has many facets that merit the attention of outcomes researchers.
A metaanalysis of behavioral treatments for attention-deficit/hyperactivity disorder
Fabiano, G. A., Pelham, W. E., Coles, E. K., Gnagy, E. M., Chronis-Tuscano, A., & O’Connor, B. C.
(2009)
There is currently controversy regarding the need for and the effectiveness of behavior modification for children with attention-deficit hyperactivity disorder (ADHD) despite years of study and multiple investigations reporting beneficial effects of the intervention. A meta-analysis was conducted by identifying relevant behavioral treatment studies in the literature. One-hundred seventy-four studies of behavioral treatment were identified from 114 individual papers that were appropriate for the meta-analysis. Effect sizes varied by study design but not generally by other study characteristics, such as the demographic variables of the participants in the studies. Overall unweighted effect sizes in between group studies (.83), pre-post studies (.70), within group studies (2.64), and single subject studies (3.78) indicated that behavioral treatments are highly effective. Based on these results, there is strong and consistent evidence that behavioral treatments are effective for treating ADHD.
A model of consequences of dementia caregivers' stress process: influence on behavioral symptoms of dementia and caregivers' behavior-related reactions
Campbell, J.
(2009)
Abstract
The purpose of this article is to extend the Schultz and Martire Caregiver Stress-Health Model by explaining consequences of the stress process beyond those related to health in dementia caregivers, including consequences for caregivers and the dyadic unit, and to highlight the dynamic that exists between caregivers' stress, behavioral symptoms of dementia, and behavior-related reactions of caregivers. The relevant literature is reviewed, establishing the pervasive effects of caregivers' stress within a care dyad. Primary informal caregivers play a predominant role in managing environmental stimuli and providing for needs, in particular adjusting their own approaches and demeanor to enhance the care environment. Thus, behavioral symptoms of dementia and the behavior-related reactions of caregivers are conceptualized as a dyadic consequence of the caregivers' stress process. This model presents an extended view of the consequences of caregivers' stress and provides a more holistic, dyadic approach to the issues these vulnerable dyads face. Behavioral symptoms of dementia and behavior-related reactions are seen as amenable to caregiver- or dyad-directed interventions that target stress reduction. This conceptualization may provide support for research, clinical, or policy initiatives that include caregiver-directed or dyadic interventions for these important behavior-related outcomes
A small-scale randomized controlled trial of the revised new forest parenting programme for preschoolers with attention deficit hyperactivity disorder
Thompson, M. J. J., Laver-Bradbury, C., Ayres, M., Le Poidevin, E., Mead, S., Dodds, C., … Sonuga-Barke, E. J. S.
(2009)
The revised new forest parenting programme (NFPP) is an 8-week psychological intervention designed to treat ADHD in preschool children by targeting, amongst other things, both underlying impairments in self-regulation and the quality of mother-child interactions. Forty-one children were randomized to either the revised NFPP or treatment as usual conditions. Outcomes were ADHD and ODD symptoms measured using questionnaires and direct observation, mothers' mental health and the quality of mother-child interactions. Effects of the revised NFPP on ADHD symptoms were large (effect size >1) and significant and effects persisted for 9 weeks post-intervention. Effects on ODD symptoms were less marked. There were no improvements in maternal mental health or parenting behavior during mother-child interaction although there was a drop in mothers' negative and an increase in their positive comments during a 5-min speech sample. The small-scale trial, although limited in power and generalizability, provides support for the efficacy of the revised NFPP. The findings need to be replicated in a larger more diverse sample.
A systematic review of internet-based self-management interventions for youth with health conditions
Stinson, J., Wilson, R., Gill, N., Yamada, J., & Holt, J.
(2009)
Abstract
OBJECTIVE:
Critically appraise research evidence on effectiveness of internet self-management interventions on health outcomes in youth with health conditions.
METHODS:
Published studies of internet interventions in youth with health conditions were evaluated. Electronic searches were conducted in EBM Reviews-Cochrane Central Register of Controlled Trials, Medline, EMBASE, CINAHL and PsychINFO. Two reviewers independently selected articles for review and assessed methodological quality. Of 29 published articles on internet interventions; only nine met the inclusion criteria and were included in analysis.
RESULTS:
While outcomes varied greatly between studies, symptoms improved in internet interventions compared to control conditions in seven of nine studies. There was conflicting evidence regarding disease-specific knowledge and quality of life, and evidence was limited regarding decreases in health care utilization.
CONCLUSIONS:
There are the beginnings of an evidence base that self-management interventions delivered via the internet improve selected outcomes in certain childhood illnesses.
Adaptation of the preventive intervention program for depression for use with predominantly low-income Latino families
D’Angelo, E.J., Llerena-Ouinn, R., Shapiro, R., Colon, F., Rodriquez, P., Gallagher, K., & Beardslee, WR.
(2009)
This paper describes the process for and safety/feasibility of adapting the Beardslee Preventive Intervention Program for Depression for use with predominantly low income, Latino families. Utilizing a Stage I model for protocol development, the adaptation involved literature review, focus groups, pilot testing of the adapted manual, and open trial of the adapted intervention with 9 families experiencing maternal depression. Adaptations included conducting the intervention in either Spanish or English, expanding the intervention to include the contextual experience of Latino families in the United States with special attention to cultural metaphors, and using a strength-based, family-centered approach. The families completed preintervention measures for maternal depression, child behavioral difficulties, global functioning, life stresses, and an interview that included questions about acculturative stressors, resiliency, and family awareness of parental depression. The postintervention interview focused on satisfaction, distress, benefits of the adapted intervention, and therapeutic alliance. The results revealed that the adaptation was nonstressful, perceived as helpful by family members, had effects that seem to be similar to the original intervention, and the preventionists could maintain fidelity to the revised manual. The therapeutic alliance with the preventionists was experienced as quite positive by the mothers. A case example illustrates how the intervention was adapted.
Alcohol use and stress in university freshmen: a comparative intervention study of two universities
Andersson, C.
(2009)
doktorsavhandling
Starting university is associated with major academic, personal and social opportunities. For many people, university entrance is also associated with increased stress and alcohol consumption. At the start of the autumn term 2002, all students entering educational programmes at two comparable middle-sized Swedish universities were invited to participate in a comparative intervention study. This included both primary and secondary interventions targeting hazardous drinking and stress. The overall aim was to improve alcohol habits and stress patterns in university freshmen at an intervention university in comparison with a control university.
A total of 2,032 (72%) freshmen responded to the baseline assessment. Half of them scored above traditional AUDIT cut-off levels for hazardous alcohol use. Factors associated with hazardous use were age below 26, male gender, family history of alcohol problems, and not being in a serious relationship. The Arnetz and Hasson Stress Questionnaire was evaluated and used to study a selection of freshmen at high riskof stress. It was easy to use and offered sufficient internal consistency and construct validity. In the freshman year, 517 students (25%) dropped out from university education. A multivariate analysis established that high stress and university setting was associated with dropout from university studies, while symptoms of depression and anxiety as well as hazardous drinking were not.
Outcome was analysed in students remaining at university at one-year follow-up. The primary interventions offered to freshmen at the intervention university reduced alcohol expectancies and mental symptoms compared with freshmen at the control university. Secondary stress interventions were effective in reducing mental symptoms and alcohol expectancies. Secondary alcohol interventions were effective in reducing AUDIT scores, alcohol expectancies, estimated blood alcohol concentrations, as well as stress and mental symptoms.
In conclusion, both primary and secondary alcohol and stress interventions have one-year effects in university freshmen and could be used in university settings.
Alternativ och Kompletterande kommunikation (AKK) i teori och praktik.
Heister-Trygg, B. and I. Andersson
(2009)
Boken är skriven för personer som i sin yrkesverksamhet ansvarar för området AKK, t ex logopeder, arbetsterapeuter och pedagoger, och för både grundutbildning och vidareutbildning.
Huvudförfattarena för denna reviderade upplaga är logopeder och driver sedan många år Södra regionens kommunikationscentrum, SÖK, och har mångårig erfarenhet av AKK-området bland såväl barn som vuxna.
Ur innehållet: Teorier kring tal, språk och kommunikation, alternativa och kompletterande kommunikationssätt, omgivningsfaktorer, metodik, etik, olika funktionsnedsättningar m m. Genom boken får vi följa ett antal personer i varierande ålder och med olika svårigheter och de ställningstagande som görs för att dessa ska få bästa möjliga förutsättningar att kunna kommunicera.
Alzheimer's disease treatment: assessing caregiver preferences for mode of treatment delivery
Abetz, L., Rofail, D., Mertzanis, P., Heelis, R., Rosa, K., Tellefsen, C., et al.
(2009)
Anhöriga Situation, behov och samhällets stöd. Litteratursammanställning
Arweson, S. and H. Edström
(2009)
Anhörigas delaktighet i psykiatrin – resultat från EUNOMIA-projektet
Wadefjord, Anna, Gustavsson, Marita, Stenmarck, Mats & Kjellin, Lars
(2009)
Tidigare forskning har visat att psykiska sjukdomar har stor inverkan inte bara på de personer som drabbas utan även på deras anhöriga, och att många anhöriga inte upplever sig vara tillräckligt delaktiga i den psykiatriska vården. Få skillnader i dessa avseenden har funnits mellan anhöriga till frivilligt vårdade och anhöriga till tvångsvårdade patienter. Denna rapport redovisar några resultat från en anhörigstudie som genomförts under perioden augusti 2004 till februari 2006 i Örebro län som en del i en större EU-finansierad europeisk studie av psykiatrisk tvångsvård, det så kallade EUNOMIA-projektet.
Syftet med Örebro-delen av EUNOMIA-projektets anhörigstudie var att undersöka hur anhöriga till frivilligt vårdade och tvångsvårdade patienter uppfattar orsak till intagning, förekomst av tvång vid intagning, bemötande av och hjälp till patienten under vården, bemö-tande av anhöriga, anhörigas delaktighet i vården samt patientens prognos.
Fyrtiofyra anhöriga till personer som intagits i psykiatrisk slutenvård i Örebro län, och som inkluderats i EUNOMIA-projektets patientstudie, tillfrågades om deltagande. Av dessa tackade 36 personer (82 %) ja till deltagande i studien, varav 25 kvinnor och 11 män. De som intervjuades var mammor, pappor, vuxna barn, syskon, make, maka eller partner, andra släktingar och närstående av annat slag. Tjugotvå av de intervjuade var närstående till frivilligt vårdade och 14 anhöriga till tvångsvårdade patienter.
Anhörigintervjun genomfördes inom fyra veckor från det att patienten skrevs in på psykiatrisk vårdavdelning. Frågorna handlade om den anhöriges relation till patienten, uppfattning om patientens möjlighet att återfå sin psykiska hälsa, bedömning av graden av tvång vid intagning, uppfattning om varför patienten blev intagen, vårdtillfredsställelse, samt om bemötande och delaktighet i och dialog med den psykiatriska vården.
Den enligt de anhöriga vanligast förekommande orsaken till att patienten blev intagen var att det förelåg allvarlig fara för eller hot mot patientens hälsa samt att patienten var oförmögen att ta hand om sig själv. Bedömningarna av vilken grad av tvång patienterna upplevde vid intagningen visade på samstämmighet mellan patienter och anhöriga. Däremot var det en större andel bland de svarande närstående än bland patienterna som ansåg att patientens behandlare eller kontaktperson förstod patienten och var engagerad i patientens behandling och vård, att patienten blev respekterad och väl behandlad på avdelningen, samt att behandlingen och vården varit till hjälp för patienten. Många anhöriga kunde tänka sig ett tvångsomhändertagande i det fall patienten skulle få samma problem igen och inte skulle vilja läggas in frivilligt.
Över 80 procent av de närstående kände sig "som vanligt", likvärdiga eller respekterade i sina kontakter med psykiatrin. Nästan 40 procent uppgav att de inte kände sig tillräckligt delaktiga i patientens vård och behandling. De som hade haft kontakt med psykiatrin under det senaste året kände sig bättre bemötta och mer delaktiga i patientens inläggning, vård och behandling än de som inte hade haft någon kontakt. Över hälften upplevde inte att de haft någon dialog med personal från psykiatrin. Svaren uttrycker stor variation med både stark kritik mot och stor tillfredsställelse med kontakterna med psykiatrin, liksom att inte alla an-höriga vill ha någon omfattande sådan kontakt.
En stor del av de närstående uttryckte optimism beträffande patientens prognos. Många trodde att deras sjuke son, dotter, förälder, make, maka, sambo, partner, släkting eller vän helt eller delvis skulle återfå sin psykiska hälsa, framför allt bland anhöriga till patienter som inte varit sjuka sedan så lång tid tillbaka.
Anhörigcentrum i Karlstad - en mötesplats med omtanke : anhörigstöd
Rågvik, H.
(2009)
Anhörigkonsulenten har en nyckelroll.
Mellfors, B.
(2009)
Anhörigstöd en viktig insats
Länsstyrelsen Östergötland
(2009)
Anhörigstöd i Orsa kommun
Hassis, L.
(2009)
Våren 2008 publicerade Dalarnas forskningsråd en kartläggning över anhörigstödet i
Dalarna. Kartläggningen visade att arbetet med anhörigfrågor ser olika ut i Dalarnas
kommuner. Föreliggande rapport syftar till att kartlägga hur samarbetet i
anhörigfrågor ser ut i Orsa kommun. Studien bygger på i första hand personliga
intervjuer med anhörigvårdare och representanter från styrgruppen.
I Orsa finns ett anhörigcenter centralt beläget i anslutning till vårdcentral,
dagverksamhet och särskilt boende. En anhörigsamordnare är anställd på halvtid för
att samordna verksamheten och fungera som kontaktperson. Till sin hjälp har
anhörigsamordnaren en styrgrupp bestående av representanter från
frivilligorganisationer, kyrka och vårdcentral. Flera av styrgruppens representanter,
samt personal från dagverksamhet, fungerar även som sk. anhörigombud i
kommunen.
I programmet för 2009 erbjuds allt från sopplunch och syjunta/stickjunta till
närståendeträffar och föreläsningar/studiecirklar om stroke och demens. Våren
2009 hade anhörigcentret kontakt med strax över hundratalet anhörigvårdare, en
viss ökning från tiden för ovan nämnda kartläggning. En stor del av kontakterna
sker per telefon och med många av anhörigvårdarna är kontakten bara sporadisk.
Utöver anhörigcentrets verksamhet erbjuds stöd till anhörigvårdare främst genom
avlösning. Avlösningen ges genom dagverksamhet, korttidsboende och hemtjänst.
De intervjuade är alla nöjda med den verksamhet som bedrivs vid anhörigcentret.
Personalen vid anhörigcentret och dagverksamheten Ljusglimten framstår som viktiga
kuggar i arbetet med anhörigstöd i kommunen. Visst missnöje finns däremot med
hemtjänsten som enligt några av de intervjuade behöver bli mer flexibel och med
korttidsboendet som idag tycks inrymma personer med alltför skiftande
sjukdomsbild. Flera av de intervjuade påtalar en hos personalen (hemtjänst och
korttidsboende/särskilt boende) bristande förståelse för de problem såväl vårdtagare
som anhörigvårdare ställs inför. För att öka denna förståelse behövs utbildning och
information.
Anhörigstöd i Skaraborg. Utvärdering av ett samverkansprojekt mellan 15 kommner. Primärvård och sjukhus 2006-2009
Skaraborgs Kommunalförbund
(2009)
Anhörigvårdare – oorganiserad, oerkänd och oavlönad omsorgsresurs. Enkätstudie av närstående vårdgivare till parkinsonpatienter
Lökk, J.
(2009)
Informella vårdgivare till kroniskt
sjuka personer utgörs i
stor utsträckning av oavlönade
närstående.
Dessa närstående upplever
en belastning och begränsning
i sin livssituation och
dåligt erkännande från omgivningen:
ju längre omsorgstid,
desto hög re belastning
inom vissa domäner.
Behovet av hemtjänst överstiger
den faktiskt erhållna
hjälpen.
Närstående är mer informerade
om sjukdomen vid längre
omsorgstid.
Samhället borde även beakta
närståendes roll vid planering
av vård och behandling
av kroniskt sjuka personer.
Assessment of caring and its effects in young people: development of the Multidimensional Assessment of Caring Activities Checklist (MACA-YC18) and the Positive and Negative Outcomes of Caring Questionnaire (PANOC-YC20) for young carers
Joseph S, Becker S, Becker F, Regel S.
(2009)
BACKGROUND: Many children, adolescents and young people are involved in caring for parents, siblings, or other relatives who have an illness, disability, mental health problem or other need for care or supervision. The aim was to develop two new instruments for use in research with young carers to assess caring activities and their psychological effects. METHOD: Two studies are reported. In study 1, 410 young carers were recruited via The Princess Royal Trust for Carers database of UK projects and asked to complete an initial item pool of 42 and 75 questionnaire items to assess caring activities and caring outcomes respectively. In study 2 a further 124 young carers were recruited. RESULTS: Following exploratory principal components analysis in study 1, 18 items were chosen to compose the Multidimensional Assessment of Caring Activities Checklist (MACA-YC18), and 20 items chosen to compose the Positive and Negative Outcomes of Caring Scales (PANOC-YC20). In study 2, normative and convergent validity data on the two instruments are reported. CONCLUSION: The MACA-YC18 is an 18-item self-report measure that can be used to provide an index of the total amount of caring activity undertaken by the young person, as well as six sub-scale scores for domestic tasks, household management, personal care, emotional care, sibling care and financial/practical care. The PANOC-YC20 is a 20-item self-report measure that can be used to provide an index of positive and negative outcomes of caring.
Att bli sedd som individ.
Winqvist, M., & Svensson, J.-O.
(2009)
Att ge omsorg till gamla föräldrar och andra anhöriga: påverkar det relationen till arbetsmarknaden?
Szebehely, M. and P. Ulmanen
(2009)
Att ge syskon utrymme – om utveckling av hälsofrämjande stöd till syskon i familjer som har barn med funktionsnedsättning
Nordgren, Ingrid & Granat, Tina
(2009)
Att samtala med föräldrar om syskonens situation
Tallborn Dellve, Andreas
(2009)
Att vara syskon till ett barn eller ungdom med cancersjukdom – tankar, behov, problem och stöd
Nolbris, M.
(2009)
Doktorsavhandling
The overall aim was to describe the siblings' thoughts on and experiences of needs, problems and supports when their brother or sister is being treated or undergoing follow-ups for or has died of cancer. The thesis uses a life-world perspective with open interviews (Papers I-IV). It describes the siblings' needs and issues when a brother or sister dies of cancer n=10 (Paper I), and it develops an understanding of the everyday experiences of siblings with a brother or sister who is receiving or has completed treatment for a cancer disease n=10 (Paper II). The thesis looks at the siblings' thoughts on their experiences of being a sibling of a brother or sister during his or her treatment or who has been treated for or has died from cancer n=20 (Paper III). The thesis also describes the siblings' experiences of being involved in a therapeutic support group when the family had or had had a child with cancer n=15 (Paper IV). The methods used to analyse the interview texts were qualitative content analysis (I, III, IV) and phenomenological hermeneutic analysis (II). The findings show that the sibling relationships strengthened. The siblings lacked support and felt they were not being given information. There was underlying anxiety and loneliness. There was a new consideration in their daily life with the sick brother or sister constantly at the centre. It was very important that the family felt well. Thoughts about death were not allowed and they tried to repress them. Anticipatory grief started already with the diagnosis. The grief when a brother or sister dies varies over time and in how it manifests itself, and there are short breaks. Therapeutic support groups with tools such as pictures and paintings validated the siblings' feelings and gave them support regardless of their age and sex. The results demonstrate a need to preserve the sibling's health. Consideration and respect for all family members may lessen suffering. Regular and appropriate information about the disease, treatment and the patient's condition is needed, as well as the offer of therapeutic support, individually or in groups.
Attitudes toward decision making and aging, and preparation for future care needs
Fowler, C., & Fisher, C. L.
(2009)
Adult children are the primary source of informal eldercare in the United States. Unfortunately, however, families rarely prepare for an aging parent's future care needs. This is problematic, as advance preparation may reduce depression and anxiety in older adults and be helpful for adult children. Given the importance of preparation prior to parental dependency, we examined factors associated with preparation for caregiving. Using survey methodology, we studied 2 groups of people: Functionally independent parents at least 60 years of age, and adult children at least 40 years of age. Several variables appeared to be associated with awareness of care needs, gathering information, and discussion of possible care arrangements. Most notably, attitudes regarding shared autonomy and aging anxiety were positively associated with each of these stages of preparation. Other findings suggest that being concerned about possible negative effects of caregiving and perceiving the future as limited may also be associated with preparation for caregiving. The results provide gerontologists, interventionists, and families with insight into attitudes that may inhibit or facilitate preparation for future caregiving needs.
Attitudes toward decision making and aging, and preparation for future care needs.
Fowler, C., & Fisher, C. L.
(2009)
Adult children are the primary source of informal eldercare in the United States. Unfortunately, however, families rarely prepare for an aging parent's future care needs. This is problematic, as advance preparation may reduce depression and anxiety in older adults and be helpful for adult children. Given the importance of preparation prior to parental dependency, we examined factors associated with preparation for caregiving. Using survey methodology, we studied 2 groups of people: Functionally independent parents at least 60 years of age, and adult children at least 40 years of age. Several variables appeared to be associated with awareness of care needs, gathering information, and discussion of possible care arrangements. Most notably, attitudes regarding shared autonomy and aging anxiety were positively associated with each of these stages of preparation. Other findings suggest that being concerned about possible negative effects of caregiving and perceiving the future as limited may also be associated with preparation for caregiving. The results provide gerontologists, interventionists, and families with insight into attitudes that may inhibit or facilitate preparation for future caregiving needs.
Barn och unga i familjer med missbruk – vägledning för socialtjänsten och andra aktörer
Socialstyrelsen
(2009)
Barns och ungas behov
Barn och unga behöver trygga och kärleksfulla vuxna som har förmåga att se och möta barnet och dess behov. I de allra flesta fall utgör föräldrarna dessa stabila vuxna. Det finns dock barn och unga som växer upp med föräldrar som inte har förmåga att ge sina barn den trygghet och omvårdnad de behöver. Bristande föräldraförmåga kan ha olika orsaker. En orsak till brister i föräldraskapet kan vara missbruks- eller beroendeproblem hos en eller båda föräldrarna.
Det finns vittnesskildringar av vad det kan innebära att växa upp med en förälder som pga. missbrukproblematik inte kan ge sitt barn den trygghet, förutsägbarhet och kärlek som det behöver. Det kan vara föräldrar som inte ser barnets behov, som skapar oro och förtvivlan och lägger över stort ansvar på barnet. Även om det finns ytterligare en förälder som inte missbrukar, finns det risk för att de vuxnas problem överskuggar tillvaron och barnets behov försummas.
Vad är missbruk och beroende?
Det är inte klarlagt när ett missbruk eller beroende får sådana konsekvenser att föräldraförmågan påverkas.
När det gäller att identifiera personer med riskbeteende med avseende på alkohol och droger, dvs. risker för den enskilda individens hälsa, finns det särskilda metoder och instrument. Då ett riskbeteende konstaterats, är nästa steg att göra en problembedömning. Även för det finns väl utprövade metoder (1).
I denna skrift ligger dock inte fokus på att bedöma förälderns missbruks- och beroendeproblem. Den handlar istället om de konsekvenser missbruks- eller beroendeproblemet kan föra med sig för barnet eller den unga samt om vikten av att ge stöd och hjälp.
När det gäller alkoholvanor finns det en gradering från bruk till riskbruk, missbruk och beroende. Missbruk respektive beroende är också medicinska diagnoser, där beroende är den allvarligare. Den mest adekvata sammanfattande benämningen för problemen i det här sammanhanget är kanske missbruks- och beroendeproblematik. För att inte tynga texten används dock oftast begreppet missbruksproblem. Missbruksproblem ska här ses som ett vitt samlande begrepp, som kan spänna över riskbruk, missbruk eller beroende och avse alla former av droger, inklusive alkohol.
Barn och unga i familjer med missbruk: vägledning för socialtjänsten och andra aktörer
Socialstyrelsen
(2009)
Barns och ungas behov
Barn och unga behöver trygga och kärleksfulla vuxna som har förmåga att se och möta barnet och dess behov. I de allra flesta fall utgör föräldrarna dessa stabila vuxna. Det finns dock barn och unga som växer upp med föräldrar som inte har förmåga att ge sina barn den trygghet och omvårdnad de behöver. Bristande föräldraförmåga kan ha olika orsaker. En orsak till brister i föräldraskapet kan vara missbruks- eller beroendeproblem hos en eller båda föräldrarna.
Det finns vittnesskildringar av vad det kan innebära att växa upp med en förälder som pga. missbrukproblematik inte kan ge sitt barn den trygghet, förutsägbarhet och kärlek som det behöver. Det kan vara föräldrar som inte ser barnets behov, som skapar oro och förtvivlan och lägger över stort ansvar på barnet. Även om det finns ytterligare en förälder som inte missbrukar, finns det risk för att de vuxnas problem överskuggar tillvaron och barnets behov försummas.
Vad är missbruk och beroende?
Det är inte klarlagt när ett missbruk eller beroende får sådana konsekvenser att föräldraförmågan påverkas.
När det gäller att identifiera personer med riskbeteende med avseende på alkohol och droger, dvs. risker för den enskilda individens hälsa, finns det särskilda metoder och instrument. Då ett riskbeteende konstaterats, är nästa steg att göra en problembedömning. Även för det finns väl utprövade metoder (1).
I denna skrift ligger dock inte fokus på att bedöma förälderns missbruks- och beroendeproblem. Den handlar istället om de konsekvenser missbruks- eller beroendeproblemet kan föra med sig för barnet eller den unga samt om vikten av att ge stöd och hjälp.
När det gäller alkoholvanor finns det en gradering från bruk till riskbruk, missbruk och beroende. Missbruk respektive beroende är också medicinska diagnoser, där beroende är den allvarligare. Den mest adekvata sammanfattande benämningen för problemen i det här sammanhanget är kanske missbruks- och beroendeproblematik. För att inte tynga texten används dock oftast begreppet missbruksproblem. Missbruksproblem ska här ses som ett vitt samlande begrepp, som kan spänna över riskbruk, missbruk eller beroende och avse alla former av droger, inklusive alkohol.
Alla goda krafter behövs
De som möter föräldrar med missbruksproblem har ett ansvar för att försäkra sig om att barnen får adekvat stöd utifrån sina behov. Det är viktigt att yrkesverksamma inom missbruksvården särskilt uppmärksammar om det finns barn som påverkas av den vuxnas missbruksproblem. Men även de generella verksamheterna som riktar sig till alla barn och unga kan ha betydelse. Trygga och lyssnande vuxna i förskola, skola, fritidsverksamhet och föreningsliv kan bli viktiga stödjande personer och förebilder utanför familjen som kan få en avgörande positiv betydelse. De har också ett ansvar att anmäla till socialtjänsten om det finns oro för att barnet eller den unga far illa. Det är också viktigt att uppmuntra föräldrar att ansöka hos socialtjänsten om man bedömer att barnet eller den unga behöver mer stöd och hjälp.
Om socialtjänsten får en anmälan eller en ansökan, syftar en allsidig utredning, om barnets eller den ungas behov, familjens och nätverkets förutsättningar, till att komma fram till hur barnet eller den unga och familjen bäst ska kunna stödjas. Stödet kan ges inom socialtjänstens ram och av andra aktörer som har speciella verksamheter för dessa barn och unga. Flera ideella organisationer är aktiva på det här området.
Trots att de här barnen och ungdomarna har uppmärksammats särskilt i statliga utredningar och rapporter många gånger under de senaste decennierna, finns det mycket i det samlade stödet till dem som kan förbättras och samordnas. Ett bekymmer är att det saknas tillförlitlig forskning om effekterna av olika insatser.
En fördel med att det finns olika aktörer är att barn och unga i dessa familjer kan nås på olika sätt. Eftersom missbruksproblem fortfarande kan vara skambelagt drar sig många familjer för att söka hjälp. För en del kan det vara lättare att vända sig till en ideell organisation för hjälp och stöd än till myndigheter. Precis som när det gäller andra problem är det viktigt att det finns olika typer av stöd och hjälp till barn och unga som lever med missbruk i familjen.
Läsanvisning
Vägledningen vänder sig till såväl socialtjänsten som andra aktörer, som möter barn och unga i familjer med missbruk. De olika kapitlen har olika relevans för olika aktörer. Vissa upprepningar förekommer.
Kapitlet Att växa upp med missbruk i familjen ger en sammanfattning av vad man vet om omfattningen, konsekvenserna samt risk- och skyddsfaktorer. Det bör vara av intresse för alla läsare.
Kapitlet Att upptäcka att barn lever med missbruk i familjen riktar sig till alla instanser som på ett eller annat sätt kommer i kontakt med barn och unga och deras föräldrar. Det tar upp tecken på barns och ungas svårigheter, olika verksamheters ansvar, vikten av samverkan och anmälningsplikten.
Kapitlet Att bedöma barns och ungas behov riktar sig främst till socialtjänsten, men kan också vara av intresse för andra aktörer som information om socialtjänstens uppgift och utredning.
Kapitlet Stödinsatser handlar om betydelsen av helhetssyn och att insatserna behöver bygga på kunskap om risk- och skyddsfaktorer. Det ger också en beskrivning av olika stöd- och hjälpinsatser, inom socialtjänsten och i andra verksamheter.
I kapitlet Vilka insatser är effektiva? görs en kort genomgång av kunskapsläget när det gäller resultatet av olika insatser och metoder. Detta kapitel är relevant för alla aktörer.
I kapitlet Att dokumentera och följa upp insatser och verksamhet ges råd kring dokumentation och lokala uppföljningar. Syftet är att inspirera till att ständigt förbättra och utveckla den egna verksamheten och samtidigt successivt ge ett allt bättre kunskapsunderlag för valet av bästa möjliga insats för de barn och unga som behöver stöd och hjälp. Det riktar sig till alla utförare – såväl inom socialtjänsten som inom ideell verksamhet och hos andra huvudmän. Slutligen förs ett kortfattat resonemang om kostnadsaspekter av att satsa på stödinsatser för barn och unga vilkas föräldrar har missbruksproblem.
Barn- och ungdomsrehabiliteringens metoder för att förebygga psykisk ohälsa
Socialstyrelsen
(2009)
Barndomen varar i generationer. Om förebyggande arbete med utsatta familjer. Andra upplagan
Killén, Kari
(2009)
Barndomen varar inte bara livet ut. Den varar i generationer. Det är viktigt att stärka föräldraskapet och ge föräldrar hjälp innan de får problem. Barn som inte får hjälp att bearbeta smärtsamma upplevelser kan komma att omedvetet vidareförmedla dessa till sina egna barn. Denna bok handlar om att förebygga nästa generations omsorgssvikt och psykiska störningar.
Barndomen varar i generationer baserar sig på en referensram där anknytningsteori och anknytningsforskning är centrala inslag. Kari Killén är både kliniker, pedagog och forskare, och i denna bok knyter hon ihop teori och praktik för att förebygga problem i föräldra-barnrelationer. Denna andra upplaga är uppdaterad och bearbetad med avseende på den forskning och erfarenhet som tillkommit sedan förra upplagan från år 2000.
Boken vänder sig till alla som arbetar med barn och ungdomar i skola, hälso- och sjukvård och inom socialtjänsten, samt till studenter inom dessa områden.
Barnperspektiv i LSS-handläggningen
Socialstyrelsen
(2009)
Under 2008/2009 gjorde Socialstyrelsen en förstudie för att ta reda på vilka problem och möjligheter som finns kring att se till barns och ungdomars behov i utredningssammanhang utifrån lagen om stöd och service till vissa funktionshindrade, LSS. De övergripande frågeställningarna var:
Hur utreder LSS-handläggarna idag barns och ungdomars behov av insatser, och hur följs dessa insatser upp?
Vad skulle handläggarna behöva för typ av utredningsstöd för att bättre kunna bedöma barns och ungdomars behov?
Förstudien genomfördes i Jönköpings län, genom enskilda intervjuer, en webbenkät samt fokusgruppssamtal med LSS-handläggare.
Det visade sig att handläggarna inte hade något särskilt utformat stöd för att få in barnperspektiv i sina utredningar. Barns behov bedömdes på olika sätt mellan handläggare inom och mellan olika kommuner. Resultaten av enkät och intervjuer visar att det fanns ett önskemål om att öka likvärdigheten kring handläggningen i olika kommuner och därmed öka rättsäkerheten. För detta krävs en struktur som betonar barnperspektiv och som gör att LSS-handläggare får ett mer likartat arbetssätt.
I fokusgrupperna presenterades två olika modeller för att ringa in behovsområden i utredningsförfarandet, Barns behov i centrum (BBIC) respektive International Classification of Functioning, Disability and health – for Children and Youth Version, (ICF-CY) Handläggarna fick sedan diskutera vad som kunde vara användbart i deras arbete.
Resultatet av fokusgrupperna visar att handläggarna ansåg att de kunde inspireras av det barnfokus som finns inbyggt i BBIC samt av modellens processtruktur. BBIC saknar dock innehåll om hur en funktionsnedsättning ger upphov till funktionshinder och hur insatsen kan underlätta för individen att fungera i sin vardag.
När det gällde ICF så uppfattade handläggarna ICF-CY som relativt svårtillgänglig i sin struktur och de hade svårt att se hur de skulle kunna använda klassifikationen i praktiken. Handläggarna tyckte att begreppen i ICF-CY kändes bekanta då innehållet i klassifikationen handlade om funktionshinder, vardagligt fungerande och delaktighet. Handläggarna kände igen sitt eget synsätt i ICF-CY eftersom ICF-CY utgår från individer som möter funktionshinder utifrån sitt vardagsfungerande, och inte ser till social problematik eller går in djupt på föräldraförmåga. Handläggarna uppfattade att angreppssättet av funktionsprofil var tilltalande då det öppnar för ett annat sätt att tänka om funktionsnedsättningar och diagnoser.
Boken om anhörigstöd
Larsen, T. and P. Schmidtbauer
(2009)
Boken om anhörigstöd
Larsen, T & Schmidtbauer, P.
(2009)
Bygga och använda språk : Bliss i AKK
Heister Trygg, Boel
(2009)
Boken presenterar blissanvändare i olika åldrar och på olika språkliga nivåer. Den vill ge inspiration att prova blisspråket också där det inte är alldeles givet. Författaren försöker bland annat att ge svar på frågor som: Varför bliss? Hur ser blisspråket ut? Hur väljer man symboler och bygger upp en blisstavla?
Caregiver -- Who Copes How?
Chappell, N. L., & Dujela, C.
(2009)
Within gerontological caregiving research, there is a major emphasis on stresses and burdens of this role. Yet there has been little attention directed toward the coping strategies that caregivers engage in to cope with this role and the factors that influence their adoption of different coping strategies. This article examines coping strategies and change in coping strategy over a 1-year period. In particular the differential importance of caregiver capacity (such as social support, health, and personality) compared with careload (such as hours of caregiving and need of the care recipient) is examined within a path model. Data came from a purposive sample of caregivers experiencing heavy demands. Overall, problem-focused coping is used more often than emotion-focused coping (either positive or negative) or seeking social support, but caregivers use all types simultaneously. Caregiver capacity, specifically neuroticism, is the strongest predictor of problem-focused coping with those high in neuroticism less likely to use this strategy. High neuroticism also predicts less use overall and negative emotion-focused coping strategies. Few significant predictors emerge of change; those that did were caregiver capacity, not careload variables. The use of all coping strategies, except seeking social support which remained stable, decreased over a 1-year period.
Caregiving and volunteering among older people in Sweden - prevalences and profiles
Jegermalm, M., & Jeppsson Grassman, E.
(2009)
Caregiving and volunteering among older people in Sweden - prevalences and profiles
Jegermalm, M., & Jeppsson Grassman, E.
(2009)
This study examines the role of older people in Swedish society by exploring the prevalence of their informal caregiving and volunteering and by analyzing the profiles of these contributors of unpaid work. Data were collected by means of telephone interviews in a Swedish representative survey conducted in 2005. Our analysis reveals three distinct profiles of people involved in unpaid activities. One of these consists of those involved both in informal help giving and volunteering, a group that has been labeled "super helpers" or "doers" in earlier research. It is important for social policy planners to recognize these groups of older people and better understand the dynamics of their unpaid work in order to ascertain whether they might need support as providers and to enhance their well-being. There does not seem to be any simple contradiction between the parallel existence of a universal welfare model of the Swedish kind and an extensive civil society in which older people play important roles as active citizens.
Caregiving and Volunteering among Older People in Sweden − Prevalence and Profiles
Jegermalm, M. and E. Jeppsson Grassman
(2009)
This study examines the role of older people in Swedish society by exploring the prevalence of their informal caregiving and volunteering and by analyzing the profiles of these contributors of unpaid work. Data were collected by means of telephone interviews in a Swedish representative survey conducted in 2005. Our analysis reveals three distinct profiles of people involved in unpaid activities. One of these consists of those involved both in informal help giving and volunteering, a group that has been labeled "super helpers" or "doers" in earlier research. It is important for social policy planners to recognize these groups of older people and better understand the dynamics of their unpaid work in order to ascertain whether they might need support as providers and to enhance their well-being. There does not seem to be any simple contradiction between the parallel existence of a universal welfare model of the Swedish kind and an extensive civil society in which older people play important roles as active citizens
Colocating health care services: a way to improve care coordination of children’s health care
Ginsburg, S.
(2008)
Pediatric practices are faced with a growing demand that they address the
healthy development of their patients. As pediatric practices strengthen their role as medical
homes for their patients, they need either to provide expanded services or enhance their
capacity to coordinate that care. One option for enhancing the existing capacity of pediatric
practices is colocation with other providers and services in the same setting. This issue
brief examines what is currently known about the use of colocation and its benefits. The
literature and interviews used as information resources for the brief suggest that colocation
of services is not a single strategy but rather a complex set of relationships, organizational
structures, and other features meant to help practices deliver effective care. However, more
thorough examination of current colocation approaches is needed before advice can be
provided to practices considering this option.
Combining work and care: carers decision-making in the context of competing policy pressures
Arksey H, Glendinning C.
(2008)
Issues related to paid work and care are of global importance, reflecting the twin pressures of population ageing and efforts to increase labour market participation. Informal carers of sick, disabled or older people can experience tensions between policies aimed at support for care and support for employment. This article discusses a study of carers' decision-making around work and care, drawing on evidence from interviews with 80 working-age carers in England. Carers are not homogeneous; their circumstances and needs differ reflecting age, gender, ethnicity, labour market participation, and the condition and/or needs of the person they support. This diversity is illustrated by contrasting rural and urban carers' decisions and experiences about work and care. Key factors that impact on carers' decisions are: current and anticipated financial need; the constraints arising from receipt of carers' and other means-tested income maintenance benefits; personal identity; job opportunities and scope for flexibility; social services provision; carers' own health. Distance, travel times and transport are unique additional challenges for rural carers who (wish to) work. These difficulties are further intensified when they intersect with other factors such as the Carer's Allowance, the local labour market and social services provision. The findings are evaluated in terms of the adequacy of current government policy measures.
Communicating stroke survivors' health and further needs for support in care-planning meetings
Hedberg, B., Johanson, M. & Cederborg, A.
(2008)
Comparable family burden in families of clinical high-risk and recent-onset psychosis patients
Wong C, Davidson L, McGlashan T, Gerson R, Malaspina D, Corcoran C.
(2008)
Aim: Family burden is prevalent in psychotic disorders, but little is known about burden experienced by families of patients in early illness. In this exploratory study, we examined the extent of burden reported by families of patients during a putative prodromal period and in the aftermath of psychosis onset. Methods: Family burden was assessed in 23 family members of patients with emerging or early psychosis. The Family Experiences Interview Schedule was used to assess both objective and subjective burden. Objective burden is comprised of increased resource demands and disruption of routine. Subjective burden includes worry, anger/displeasure and resentment at objective burden. Results: Family burden was comparable for the clinical high-risk and recent-onset psychosis patients. Worry was as high as previously reported for more chronic patients. By contrast, there was a relative absence of displeasure/anger. Family members endorsed assisting patients in activities of daily living, although not 'minding' doing so, and reported little need to supervise or control patients' behaviour. Conclusions: Early in emerging psychotic illness, families report helping patients and worrying about them, but their lives are not yet disrupted and they do not have much anger or resentment. This may be an ideal time then for intervention with families, as worry may motivate help-seeking by families. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)
Conceptual challenges in the study of caregiver--care recipient relationships
Lingler, J. H., Sherwood, P. R., Crighton, M. H., Song, M. & Happ. M. B
(2008)
Conformity and resistance in Self-Management Strategies of ‘Good Girls’.
Sanders, J., & Munford, R.,
(2008)
This article examines how girls manage challenging encounters with non-familial adults. Drawing on a subset of qualitative data collected as part of a larger ethnographic study, it examines the ways girls maintain a strong sense of self as a good person in the face of interpersonal challenge from these non-familial adults. The discourse of the 'good girl' allows them to resist excessive demands of adults and provides opportunities to have fun. The importance of the parent—child relationship in terms of providing a safe context from which the girls can generate the good and bad girl facades is also highlighted.
Co-ordination services in Scotland: A report to care co-ordination network UK
Purves, R., Ridell, S., & Weedon, E.
(2008)
Coping strategies and styles of family carers of persons with enduring mental illness: a mixed methods analysis
Kartalova-O’Doherty, Y. & Doherty, D.T.
(2008)
Coping strategies, anxiety and depression in caregivers of people with Alzheimer's disease
Cooper, C., Katona, C. & Orrell, M.
(2008)
Coping, Social Relations, and Communication: A Qualitative Exploratory Study of Children of Parents with Cancer
Thastum, M., Johansen, M. B., Gubba, L., Olesen, L. B., & Romer, G.
(2008)
The purpose of this qualitative study of families where a parent has cancer was to explore ways of informing the child of the parent's illness, how the child perceives the parent's emotional state, how the child copes with the parent's illness, and how this coping relates to the parent's coping and concerns for the child. Twenty-one children from 15 families and their parents were interviewed. In 13 families the mother was ill, in two the father. Children were aware of the facts of the illness, but there was limited emotional communication between the generations. The children were very observant of both the ill and the healthy parent's emotional condition. The children's observations and expressions led us to identify five coping strategies the younger generation used: Helping others, parentification, distraction, keeping it in the head, and wishful thinking. Both adaptive and destructive examples of parentification were found. Communication patterns and parental coping seemed to be highly related to the child's coping repertoire. Even though most children seemed to manage rather well, all children were strongly affected by the illness. The 'healthiest' adaptation related to factors within the family system, which has implications for the provision of help.
Correlates of intrusion and avoidance as stress response symptoms in family carers of patients suffering from dementia
Ulstein, I., Wyller, T. B. & Engedal, K.
(2008)
Daglig verksamhet enligt LSS – en kartläggning
Socialstyrelsen
(2008)
Daglig verksamhet är en av de tio insatserna i lagen (1993:387) om stöd och service till vissa funktionshindrade (LSS). Det är också den insats som flest personer har. Antalet personer med daglig verksamhet har ökat från 20 500 år 2000 till 25 800 år 2006. Kostnader per person i daglig verksamhet sjönk under samma tid med tio procent. Mot denna bakgrund, och på grund av att Socialstyrelsen från enskilda personer, från brukarorganisationer och från yrkesverksamma inom området har fått signaler om brister i kvaliteten, tog Socialstyrelsen initiativ till denna kartläggning av daglig verksamhet enligt LSS.
Bilden som framträder genom kartläggningen är att utbudet av aktiviteter inom den dagliga verksamheten är stort. Trots detta finns det svårigheter för kommunerna att i vissa fall finna verksamheter som passar varje enskild person.
Traditionellt har daglig verksamhet varit organiserad som gruppverksamhet i särskilda lokaler. Utvecklingen har gått mot mer flexibla former, t.ex. utflyttade grupper som finns på olika företag. Av dem som har beslut om daglig verksamhet har i dag cirka 15 procent detta i form av en individuell placering på en ordinarie arbetsplats. Variationen är dock stor mellan olika kommuner.
Kommuner organiserar sin verksamhet på olika sätt. Vilka nämnder som har ansvaret för daglig verksamhet enligt LSS varierar. Totalt sett har cirka åtta procent av dem som har daglig verksamhet detta i enskild regi. I storstadsregionerna däremot är motsvarande siffra 21 procent. Kartläggningen har inte kunnat visa på några större skillnader mellan kommunal och enskild verksamhet, när det gäller verksamhetens innehåll.
Utmaningen för den dagliga verksamheten ligger i att vidareutveckla både innehållet och formerna för verksamheten samt att öppna vägen till arbetslivet.
Socialstyrelsen kan konstatera att det övergripande målet med daglig verksamhet, att den enskilde på sikt ska kunna få möjlighet till lönearbete, inte uppfylls. Övergångar till ett sådant arbete är näst intill obefintliga. Den dagliga verksamheten riskerar att bidra till en inlåsningseffekt då andra aktörer inom arbetsmarknadspolitikens fält inte ser denna grupp som sin målgrupp. Samverkan mellan daglig verksamhet och andra arbetsmarknadspolitiska aktörer brister. Den måste utvecklas för att målet ska nås.
Traditionellt finns det god kunskap för och erfarenhet av att ge personer med utvecklingsstörning eller med ett stort omvårdnadsbehov en daglig verksamhet med god kvalitet. Det är angeläget att även denna del av verksamheten utvecklas så att inte dessa personers behov kommer i skymundan för de nya behov som ställs på verksamheten.
Deliberate self-harm behaviour in Swedish adolescent girls reports from public assessment and treatment agencies
Holmqvist R, Carlberg M, Hellgren L.
(2008)
Self-harming behaviour among adolescents, and particularly adolescent girls, has evoked much public attention. This article presents a Swedish study about what information assessment and treatment agencies have about self-harming behaviour in the form of cutting and burning in adolescent girls. The study was made on assignment by the Swedish National Board of Health and Welfare. All public agencies assessing or treating adolescents with psychological problems in three Swedish cities were asked to deliver information about self-harming behaviour in the form of self-cutting or self-burning in girls between 13 and 18 years of age. In addition, the young offender institutions within the National Board of Institutional Care treating teenager girls were asked to deliver information about self-harming behaviour in their clients. We found that about 1% of the total population of girls in these ages were known to have cut or burnt themselves and about one third of the girls in the institutions. Attempts to distinguish subgroups among the girls were only partly successful. Although some subgroups could be identified, the overlap between them was large. The conclusion was that this behaviour may be seen as an expression of a wide variety of problems in a heterogeneous group of young persons. © 2007 Springer Science+Business Media, LLC.
Den nya socialtjänstlagen
Bergstrand, B. O.
(2008)
depression and caregiver attitudes: Results from the aged in home care study.
Soldato, M., Liperoti, R., Landi, F., Carpenter, I. G., Bernabei, R., & Onder, G.
(2008)
Depression in men in the postnatal period and later child psychopathology: a population cohort study
Ramchandani, P.G., Stein, A., O’Connor, T.G., Heron, J., Murray, L. & Evans, J.
(2008)
OBJECTIVE:
Postnatal depression in women is associated with adverse effects on both maternal health and children's development. It is unclear whether depression in men at this time poses comparable risks. The present study set out to assess the association between depression in men in the postnatal period and later psychiatric disorders in their children and to investigate predisposing factors for depression in men following childbirth.
METHOD:
A population-based cohort of 10,975 fathers and their children from the Avon Longitudinal Study of Parents and Children (ALSPAC) was recruited in the prenatal period and followed for 7 years. Paternal depressive symptoms were assessed with the Edinburgh Postnatal Depression Scale and later child psychiatric disorder (DSM-IV) with the Development and Well-Being Assessment.
RESULTS:
Depression in fathers in the postnatal period was significantly associated with psychiatric disorder in their children 7 years later (adjusted OR 1.72, 95% CI 1.07-2.77), most notably oppositional defiant/conduct disorders (adjusted OR 1.94, 95% CI 1.04-3.61), after adjusting for maternal depression and paternal educational level. A history of severe depression and high prenatal symptom scores for depression and anxiety were the strongest predictors of paternal depression in the postnatal period.
CONCLUSIONS:
Depression in fathers in the postnatal period is associated with later psychiatric disorders in their children, independently of maternal postnatal depression. Further research into the risks associated with paternal psychopathology is required because this could represent an important opportunity for public health intervention.
Depression in men in the postnatal period and later child psychopathology: a population cohort study
Ramchandani, P.G., Stein, A., O’Connor, T.G., Heron, J., Murray, L. & Evans, J.
(2008)
OBJECTIVE:
Postnatal depression in women is associated with adverse effects on both maternal health and children's development. It is unclear whether depression in men at this time poses comparable risks. The present study set out to assess the association between depression in men in the postnatal period and later psychiatric disorders in their children and to investigate predisposing factors for depression in men following childbirth.
METHOD:
A population-based cohort of 10,975 fathers and their children from the Avon Longitudinal Study of Parents and Children (ALSPAC) was recruited in the prenatal period and followed for 7 years. Paternal depressive symptoms were assessed with the Edinburgh Postnatal Depression Scale and later child psychiatric disorder (DSM-IV) with the Development and Well-Being Assessment.
RESULTS:
Depression in fathers in the postnatal period was significantly associated with psychiatric disorder in their children 7 years later (adjusted OR 1.72, 95% CI 1.07-2.77), most notably oppositional defiant/conduct disorders (adjusted OR 1.94, 95% CI 1.04-3.61), after adjusting for maternal depression and paternal educational level. A history of severe depression and high prenatal symptom scores for depression and anxiety were the strongest predictors of paternal depression in the postnatal period.
CONCLUSIONS:
Depression in fathers in the postnatal period is associated with later psychiatric disorders in their children, independently of maternal postnatal depression. Further research into the risks associated with paternal psychopathology is required because this could represent an important opportunity for public health intervention.
Det goda boendet : En kvalitativ studie av anhörigas upplevelse av kontaktmannaskap och individuell målplan. Kandidatuppsats.
Andersson, A., Medborg, P
(2008)
Determining care management activities associated with mastery and relationship strain for dementia caregivers
Connor, K. I., McNeese-Smith, D. K., Vickrey, B. G., Van Servellen, G. M., Chang, B. L., Lee, M. L., Vassar, S. D. & Chodosh, J.
(2008)
Developing and evaluating complex interventions: the new Medical Research Council guidance
Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M.
(2008)
Complex interventions are widely used in the health service, in public health practice, and in areas of social policy that have important health consequences, such as education, transport, and housing. They present various problems for evaluators, in addition to the practical and methodological difficulties that any successful evaluation must overcome. In 2000, the Medical Research Council (MRC) published a framework1 to help researchers and research funders to recognise and adopt appropriate methods. The framework has been highly influential, and the accompanying BMJ paper is widely cited.2 However, much valuable experience has since accumulated of both conventional and more innovative methods. This has now been incorporated in comprehensively revised and updated guidance recently released by the MRC (www.mrc.ac.uk/complexinterventionsguidance). In this article we summarise the issues that prompted the revision and the key messages of the new guidance.
Developing the concept of family involvement and alienation questionnaire in the context of psychiatric care
Ewertzon, M., K. Lützén, et al.
(2008)
Research shows that family members of people with a mental illness often experience a lack of involvement in the psychiatric care of their relative. An interpretation of the findings of these studies raises the question of whether the family members' experience of not being involved can be conceptualized in terms of alienation towards mental health services from their encounter with psychiatric care. In order to explore this possibility, the Family Involvement and Alienation Questionnaire (FIAQ) was constructed, guided by relevant theoretical frameworks and empirical research. The content validity of the questionnaire was evaluated by two groups of experienced researchers who had sound knowledge of the theoretical frameworks used. Validity based on the response process was evaluated by the parents of people with mental illness. The reliability of the questionnaire was evaluated by a test-retest design with a group of 15 family members. The data were analyzed by a non-parametric statistical method. The results of the validity and reliability evaluations showed that of the 46 original items in the questionnaire, 28 would be useful in exploring the concept of family involvement and alienation in the context of psychiatric care. Further, minor modifications could make the FIAQ useful in exploring these concepts in other settings.
Dignity in the end of life care : what does it mean to older people and staff in nursing homes? Diss.
Dwyer, L-L.
(2008)
The discussion of a palliative care and a dignified death has almost exclusively been applied to people dying of cancer. As people are getting older and are living longer, nursing homes have become an important place for end-of-life care and death. Dignity is a concept often used in health care documents but their meaning is rarely clarified.The main aim of this thesis was to gain a deeper understanding of what dignity meant to older people in end of life care as well as to nursing home staff. The thesis comprises four studies. The first and second study involved older people living in nursing home settings studied from a hermeneutic perspective. In the first study twelve older people in two nursing homes were interviewed two to four times over a period of 18–24 months during 2002–2003. Altogether, 39 interviews were analyzed by a hermeneutic method. Dignity was closely linked to self-image and identity. The themes of unrecognizable body, dependence and fragility constituted threats to dignity. The third theme, inner strength and sense of coherence, seemed to assist the older people in maintaining dignity of identity. In the second study the aim was to acquire a deeper understanding of how three older women from study I, created meaning in everyday life at the nursing home. A secondary analysis was carried out and showed meaning in everyday life was created by an inner dialogue, communication and relationships with others. The third study was to explore nursing home staff members' experience of what dignity in end-of –life care means to older people and to themselves.Totally 21 interviews with staff were carried out and analyzed through a qualitative content analysis. The meaning of older people's dignity was conceptualized as feeling trust, which implied being shown respect. Staff members' dignity was conceptualized as maintaining self-respect. Dignity was threatened in situations where staff experienced themselves and the older people as being ignored and thereby marginalized. The fourth study was carried out through focus groups discussions with 20 staff members about seven older peoples dying death and care. The analyses showed that conversations and discussions about death were rare. Death was surrounded by silence. It was disclosed that the older dying person's thoughts and attitudes of death were not explicitly known. A dignified death meant alleviation of bodily suffering and pain and meaningfulness. The staff's ethical reasoning mainly concerned their experience of a gap between their personal ideals of what a dignified end of life should include and what they were able to provide in reality, which could result in conscious stress. Staff members need training and support. End of life care demands competence and teamwork.A challenge for future care of older people would be to develop a nursing home environment in which human dignity is promoted.
Disclosure of incurable illness to spouses: do they want to know? A Swedish population-based follow-up study
Dahlstrand, H., Hauksdóttir, A., Valdimarsdóttir, U., Fürst, C. J., Bergmark, K. & Steineck G.
(2008)
Does Early Bereavement Counseling Prevent Ill Health and Untimely Death?
Grimby A., Johansson ÅK.
(2008)
Fifty elderly bereaved men and women, who received bereavement counseling by a physician and a psychologist at 3 separate occasions during the year after loss, were followed during another 10 years in regard to morbidity and mortality, as some earlier studies have indicated increased risk during widowhood. Days of hospital care and mortality rates during 5 and 8 years, respectively, were the primary outcome variables. A group of representative married subjects was used for comparison purposes. The results showed no difference between the groups in the number of days of care before loss, nor did the days of hospital care after the loss differ. The mortality rate was similar in both groups. This may suggest that bereavement counseling has a preventive effect regarding health and survival, but this should be further evaluated in controlled studies before counseling programs can be recommended.
Drömjobb för en dotter
Meri, T.
(2008)
Early child contingency learning and detection: Research evidence and implications for practice
Dunst C, Trivette C, Raab M, Masiello T.
(2008)
The types of contingency experiences infants and young children are typically exposed to are examined with a focus on the implications for early childhood intervention with young children who have developmental disabilities and delays. Studies of response-contingent child learning, the manner in which contingencies are not under direct child control, and child/caregiver reciprocal contingencies, are reviewed in terms of how they influence child learning and development. Results indicate that the different types of contingencies all positively influence child behavior. Implications for practice are described in terms of contingency-rich everyday child learning activities, child response-contingent learning in the context of those activities, and caregiver contingent responsiveness as an instructional strategy for supporting child contingency learning.
Education about family caregiving: Advocating family physician involvement.
Yaffe, MJ., Jacobs, BJ.
(2008)
Effects of Parent Skills Training with Behavioral Couples Therapy for alcoholism on children: a randomized clinical pilot trial
Lam WK, Fals-Stewart W, Kelley ML.
(2008)
This pilot study examined preliminary effects of Parent Skills Training with Behavioral Couples Therapy on children's behavioral functioning. Participants were men (N = 30) entering outpatient alcohol treatment, their female partners, and a custodial child between 8 and 12 years of age. Couples were randomly assigned to one of three equally intensive conditions: (a) Parent Skills with Behavioral Couples Therapy (PSBCT), (b) BCT (without parent training), and (c) Individual-Based Treatment (IBT; without couples-based or parent skills interventions). Parents completed measures of child externalizing and internalizing behaviors at pretreatment, posttreatment, 6- and 12-month follow up; children completed self-reports of internalizing symptoms at each assessment. Only PSBCT participants reported significant effects on all child measures throughout the 12-month follow up. PSBCT showed medium to large effects in child functioning relative to IBT, and small to medium effects relative to BCT from baseline through follow up. Effect sizes suggest clinically meaningful differences between PSBCT and both BCT and IBT that warrant further empirical evaluation of BCT with parent training for alcohol-abusing men and their partners.
Effects of Parent Skills Training with Behavioral Couples Therapy for alcoholism on children: a randomized clinical pilot trial.
Lam WK, Fals-Stewart W, Kelley ML.
(2008)
This pilot study examined preliminary effects of Parent Skills Training with Behavioral Couples Therapy on children's behavioral functioning. Participants were men (N = 30) entering outpatient alcohol treatment, their female partners, and a custodial child between 8 and 12 years of age. Couples were randomly assigned to one of three equally intensive conditions: (a) Parent Skills with Behavioral Couples Therapy (PSBCT), (b) BCT (without parent training), and (c) Individual-Based Treatment (IBT; without couples-based or parent skills interventions). Parents completed measures of child externalizing and internalizing behaviors at pretreatment, post-treatment, 6-and 12-month follow-up; children completed self-reports of internalizing symptoms at each assessment. Only PSBCT participants reported significant effects on all child measures throughout the 12-month follow up. PSBCT showed medium to large effects in child functioning relative to IBT, and small to medium effects relative to BCT from baseline through follow up. Effect sizes suggest clinically meaningful differences between PSBCT and both BCT and IBT that warrant further empirical evaluation of BCT with parent training for alcohol-abusing men and their partners.
Keywords: children of alcoholics, parent training, behavioral couples therapy, alcoholism treatment, child functioning
Effekt av strukturert problemlösning I familier med demens
Ulstein, I. and A. Johannesson
(2008)
Eldercare and employed caregivers: a public/private responsibility?
Koerin, B.B., Harrigan, M.P & Secret, M.
(2008)
Employing telehealth to enhance overall quality of life and health for families.
DeVany, M., Alverson, D., D'Iorio, J. & Simmons, S.
(2008)
Empowering carers to reconstruct their finances
Bechelet, L., Heal, R., Leam C., Payne, M.
(2008)
Enhancing Health Care Communication Skills: Preliminary Evaluation of a Curriculum for Family Caregivers
Moore, C. D.
(2008)
Enhancing health care communication skills: preliminary evaluation of a curriculum for family caregivers
Moore, C.
(2008)
Ensam på insidan; syskon berättar
Alwin Ann-Marie
(2008)
Hur är det att ha ett syskon med funktionshinder? Ja, man lär sig ta ansvar tidigt och blir ofta mycket duktig. Men samtidigt är det många barn som känner sig ensamma. Det kan vara tungt att orka med en jobbig vardag med bråk och oväsen där man jämt måste ta hänsyn. Det kan vara svårt att förklara för vänner och skolkamrater varför ens syskon beter sig annorlunda. Därför undviker man kanske att ta hem kamrater och känner sig ännu mer ensam och utsatt.
Den här boken bygger på barns och ungdomars egna berättelser. Det är starka berättelser där många syskon med liknande erfarenheter kan känna igen sig. Alla vuxna – lärare, psykologer, läkare och andra som möter dessa barn har stor nytta av att lyssna på dessa modiga barn och ungdomar som vågar och vill berätta.
Episodic Crises in the Provision of Care to Elderly Relatives.
Sims-Gould, J., Martin-Matthews, A. & Gignac, M.A.M.
(2008)
Ett rikt och meningsfullt liv
Spjuth, E. & Sundström, Å.
(2008)
Ett rikt och meningsfullt liv
Spjuth, E. & Sundström, Å.
(2008)
Evaluation of a psycho-educational group programme for family caregivers in home-based palliative care
Hudson P, Quinn K, Kristjanson L, Thomas T, Braithwaite M, Fisher J, et al.
(2008)
Evaluation of a psycho-educational group programme for family caregivers in home-based palliative care
Hudson, P., Quinn, K., Kristjanson, L., Thomas, T., Braithwaite, M., Fisher, J. et al
(2008)
Evaluation of an intensive family preservation service for families affected by parental substance misuse
Forrester D, Copello A, Waissbein C, Pokhrel S.
(2008)
Parental misuse of drugs or alcohol is recognised to be an issue for a high proportion of families to known social services, and for many children who enter care. However, there is limited research on what is effective in working with such families. This article reports on an evaluation of an Intensive Family Preservation Service (named 'Option 2') aimed at families in which parents misuse substances and children are considered at risk of entering care. The study used mixed methods. A quasi-experimental element compared solely data relating to care entry (e.g. how long children spent in care and its cost) for Option 2 children (n = 279) and a comparison group of referrals not provided with the service (n = 89) on average 3.5 years after referral. It found that about 40 per cent of children in both groups entered care, however Option 2 children took longer to enter, spent less time in care and were more likely to be at home at follow-up. As a result, Option 2 produced significant cost savings. A small-scale qualitative element of the study involved interviews with 11 parents and seven children in eight families. The findings suggested that Option 2 was a highly professional and appreciated service. For some families it achieved permanent change. For others, particularly those with complex and long-standing problems, significant positive changes were not sustained. The implications for services designed to prevent public care, particularly where there are substance misuse issues, are discussed and recommendations for policy and evaluation made. Copyright © 2008 John Wiley & Sons, Ltd.
Evaluation of Internet-Based Technology for Supporting Self-Care: Problems Encountered by Patients and Caregivers When Using Self-Care Applications
Nijland, N., van Gemert-Pijnen, J., Boer, H., Steehouder, M. F. & Seydel, E. R.
(2008)
Evaluation of the Betty Ford Children's Program
Moe J, Johnson J, Wade W.
(2008)
This article reports on a program evaluation of the Betty Ford Center Children's Program, a program specifically designed for the children of substance abusers. Approximately 160 participating children (aged 7–12) were evaluated at pretest and posttest using a comprehensive psychological battery; a subsample of 50 children participated in a follow-up telephone interview 6 months later. Results showed that children of substance abusers benefit from brief, intensive program efforts that serve their special circumstances and highlight the important role social workers and other clinicians have in helping children reevaluate how they are impacted by their parent's addiction.
Evaluation of the Betty Ford Children's Program
Moe J, Johnson J, Wade W.
(2008)
This article reports on a program evaluation of the Betty Ford Center Children's Program, a program specifically designed for the children of substance abusers. Approximately 160 participating children (aged 7–12) were evaluated at pretest and posttest using a comprehensive psychological battery; a subsample of 50 children participated in a follow-up telephone interview 6 months later. Results showed that children of substance abusers benefit from brief, intensive program efforts that serve their special circumstances and highlight the important role social workers and other clinicians have in helping children reevaluate how they are impacted by their parent's addiction.
Evidence-based practices for parentally bereaved children and their families
Haine, R.A., Ayers, T.S., Sandler, I.N. & Wolchik, S.A.
(2008)
Parental death is one of the most traumatic events that can occur in childhood, and several reviews of the literature have found that the death of a parent places children at risk for a number of negative outcomes. This article describes the knowledge base regarding both empirically-supported, malleable factors that have been shown to contribute to or protect children from mental health problems following the death of a parent and evidence-based practices to change these factors. In addition, nonmealleable factors clinicians should consider when providing services for children who have experienced the death of a parent are reviewed.
Evidence-based practices for parentally bereaved children and their families
Haine, R.A., Ayers, T.S., Sandler, I.N., & Wolchik, S.A.
(2008)
Parental death is one of the most traumatic events that can occur in childhood, and several reviews of the literature have found that the death of a parent places children at risk for a number of negative outcomes. This article describes the knowledge base regarding both empirically-supported, malleable factors that have been shown to contribute to or protect children from mental health problems following the death of a parent and evidence-based practices to change these factors. In addition, nonmealleable factors clinicians should consider when providing services for children who have experienced the death of a parent are reviewed.
Evidence-based treatment and practice: New opportunities to bridge clinical research and practice, enhance the knowledge base, and improve patient care
Kazdin, A.
(2008)
The long-standing divide between research and practice in clinical psychology has received increased attention in view of the development of evidence-based interventions and practice and public interest, oversight, and management of psychological services. The gap has been reflected in concerns from those in practice about the applicability of findings from psychotherapy research as a guide to clinical work and concerns from those in research about how clinical work is conducted. Research and practice are united in their commitment to providing the best of psychological knowledge and methods to improve the quality of patient care. This article highlights issues in the research- practice debate as a backdrop for rapprochement. Suggestions are made for changes and shifts in emphases in psychotherapy research and clinical practice. The changes are designed to ensure that both research and practice contribute to our knowledge base and provide information that can be used more readily to improve patient care and, in the process, reduce the perceived and real hiatus between research and practice.
Det kognitiva samtalet i vården
D´Elia
(2004)
Developing service to support parents caring for a technology-dependent child at home
Kirk, S., & Glendinning, C.
(2004)
BACKGROUND:
A group of children with complex health care needs have emerged as a result of medical advances and government policies emphasizing the community as the arena for care. Some of these children remain dependent on the medical technology that enabled them to survive and require care of a complex and intensive nature to be carried out by their parents at home.
AIMS:
To explore the experiences of families caring at home for a technology-dependent child; to examine their needs for practical and other support; and to examine how far services are currently meeting these needs. Methods In-depth interviews were conducted with the parents of 24 technology-dependent children and with 44 health, social care and other professionals.
RESULTS:
Services in the community were not sufficiently developed to support this group of families. Major problems were identified in the purchasing and provision of both short-term care/home support services and specialist equipment/therapies in the community. Service provision could be poorly planned and co-ordinated at an operational level and few families had a designated key worker. Parents felt that professionals did not always recognize either the emotional costs entailed in providing care of this nature or their expertise in caregiving. Information-giving to parents was often described as poor and participants reported that hospital professionals failed to negotiate the transfer of caregiving responsibility to parents.
CONCLUSIONS:
Services need to work in partnership with families and with each other at both strategic and operational levels, to develop integrated and co-ordinated services that can meet the needs of this group of families.
Dyadic interaction with a child with multiple disabilities: A system theory perspective on communication
Olsson, C.
(2004)
A mutually rewarding communicative interaction with a child whose development is atypical presents unique challenges that have to be met through the implementation of unique strategies by both partners in a dyad. The aim of this study was to provide a description, interpretation, and model for communicative interaction in a particular dyad that comprised a child with severe multiple disabilities who functioned at a presymbolic level and his caregiver. A qualitative, inductive approach focused on process analysis was used to examine a videotaped interaction between a 6-year-old boy with severe multiple disabilities and his caregiver in a play session at pre-school. System theory was used as a theoretical and conceptual framework to analyse the communicative process. Co-regulation, consensual frames, and system dynamics were used as key concepts to examine how the behaviors of the child and the behaviors of the adult were related to each other and how the partners co-created meaning in their interaction. As a result of the analysis, two models are presented. The first is a model of how a hierarchical order of consensual frames is built. The second model is a process map that provides an illustration of the communication dynamics. It is suggested that a system theory approach could be a useful framework, not only to explain results, but also as an analytical tool to provide more dyad-specific interaction models as a basis for individualized interventions. © 2004 Taylor & Francis Ltd.
Embodiment of severe and enduring mental illness: finding meaning in schizophrenia
McCann TV, Clark E.
(2004)
For many individuals, schizophrenia is a severe and enduring illness. While nurses need to understand the symptomatology of the illness in order to provide specific care and treatment, it also is important to find out how people with schizophrenia embody the illness. Capturing this knowledge will help nurses to provide more appropriate care to these individuals. This paper, which is taken from a larger qualitative study, reports the lived experience of young adults with schizophrenia. Three main themes emerged from the data, which highlighted how these individuals found meaning in schizophrenia. The first theme,"embodied temporality: illness as a catastrophic experience,"portrayed how schizophrenia affected participants' temporality or lived time. The second theme,"embodied relationality: illness as a mediator of social relationships,"reflected how the illness affected their relationships with others. The third theme,"embodied treatment: medications side effects as burdensome,"illustrated how the side effects of antipsychotic medications distorted the individual's perception of his or her body and how it compromised the ability to establish and maintain sexual relationships. The findings are important to mental health nurses because they highlight the need to be sensitive to how people with schizophrenia find meaning in their illness experience and to incorporate this knowledge into the care that they provide.
En närståendes handbok
Mesterton, Madeleine
(2004)
Enhancements to the standard behavioral parent training paradigm for families of children with ADHD: Review and future directions
Chronis, A. M., Chacko, A., Fabiano, G. A., Wymbs, B. T., & Pelham, W. E.
(2004)
Behavioral parent training (BPT) is one of the empirically supported psychosocial treatments for ADHD. Over many years and in many studies, BPT has been documented to improve both child ADHD behavior and maladaptive parenting behavior. In some studies, BPT has also been found to result in benefits in additional domains, such as parenting stress and child classroom behavior. However, the BPT literature on children selected as having ADHD lags behind research conducted on BPT for children selected as having oppositional defiant and conduct disorders (ODD and CD, respectively) with regard to examination of factors that may limit treatment attainment, compliance, and outcomes, such as single parenthood, parental psychopathology, and child comorbidity. Because of the high degree of comorbidity between ADHD and ODD/CD, it is difficult to separate the two BPT literatures. The parameters of BPT (e.g.. format and setting), parent factors, and child factors that may contribute to treatment outcomes for families of children with ADHD are reviewed here and recommendations for future BPT research in the area of ADHD are made.
Ett helt vanligt ovanligt liv : vad är ett gott liv för människor med omfattande funktionshinder? : projektrapport
Andersson, Ingela
(2004)
Exploring Comprehensibility and Manageability in Palliative Home Care: An Interview Study of Dying Cancer Patients' Informal Carers
Milberg, A. and P. Strang
(2004)
The presence of an informal carer is often a prerequisite for successful palliative home care, and the staffs ability to support informal carers' coping in such situations is important. Recent research has revealed that it is possible to achieve positive psychological states in palliative care despite the burdening situation. As there is a lack of theory-based coping studies, the aim of this study was to describe, within the context of palliative home care, two concepts in Antonovsky's theory of Sense of Coherence: comprehensibility (a perception that the challenge is understood) and manageability (a perception that the resources to cope are available). Tape-recorded semi-structured interviews with 19 informal carers during ongoing palliative home care were transcribed and analysed with a qualitative hermeneutic approach. Elements that facilitated comprehensibility included open information, symbolic information, basic life assumptions and previous knowledge. These were important for creating a congruent inner reality (as opposed to chaos). Resources contributing to manageability dealt with power, support, competence and accessibility, which on a more abstract level resulted in a feeling of togetherness (as opposed to isolation). The findings are discussed in relation to the complexity of communication between staff and carers within palliative care. (PsycINFO Database Record (c) 2007 APA ) (journal abstract)
Exploring comprehensibility and manageability in palliative home care: An interview study of dying cancer patients' informal carers
Milberg, A., & Strang, P.
(2004)
Exploring Comprehensibility and Manageability in Palliative Home Care: An Interview Study of Dying Cancer Patients' Informal Carers
Milberg, A. and P. Strang
(2004)
The presence of an informal carer is often a prerequisite for successful palliative home care, and the staffs ability to support informal carers' coping in such situations is important. Recent research has revealed that it is possible to achieve positive psychological states in palliative care despite the burdening situation. As there is a lack of theory-based coping studies, the aim of this study was to describe, within the context of palliative home care, two concepts in Antonovsky's theory of Sense of Coherence: comprehensibility (a perception that the challenge is understood) and manageability (a perception that the resources to cope are available). Tape-recorded semi-structured interviews with 19 informal carers during ongoing palliative home care were transcribed and analysed with a qualitative hermeneutic approach. Elements that facilitated comprehensibility included open information, symbolic information, basic life assumptions and previous knowledge. These were important for creating a congruent inner reality (as opposed to chaos). Resources contributing to manageability dealt with power, support, competence and accessibility, which on a more abstract level resulted in a feeling of togetherness (as opposed to isolation). The findings are discussed in relation to the complexity of communication between staff and carers within palliative care. (PsycINFO Database Record (c) 2007 APA ) (journal abstract)
Facilitating communication in children with multiple disabilities: Three case studies of girls with Rett syndrome
Ryan D, McGregor F, Akermanis M, Southwell K, Ramke M, Woodyatt G.
(2004)
Purpose: To investigate the effect of cueing on communicative responses of children with multiple disabilities in an educational setting. It was hypothesized that differences would exist in teacher interactional styles and the use of orienting cues would increase the communicative responses of the participants. Method: A naturalistic observation research method was employed in order to examine the interaction of three student - teacher dyads in three special schools. Three different activity types were videotaped from which interactions were coded and analysed. Results: Multi-modal cueing facilitated communicative responses of children with Rett syndrome. However, increased communication opportunities provided by caregivers did not elicit increased responses from the girls. Conclusion: There is a difference in cueing by teachers in their interactions with children with multiple disabilities. Also, more frequent communicative interactions did not necessarily lead to increased student responses. It is suggested that amount and type of cueing may need to be considered to be effective in generating student responses. The small number of participants, however, means findings should be viewed cautiously and that more research is indicated. © 2004 Taylor & Francis Ltd.
Familjer och missbruk, om glömda barn och glömda föräldrar.
Anna-Bodil Bengtsson, Ingegerd Gavelin
(2004)
Många svenska barn far illa idag. Den ojämförligt största gruppen är barn till alkoholmissbrukare. Ändå är både barnen och deras föräldrar i många avseende glömda. I boken beskrivs både barnens och föräldrarnas livssituation. Föräldraskapet är en stark kraft, som måste tillvaratas för att stödja dessa utsatta familjer. Både barn och föräldrar behöver bli sedda. För att det skall bli möjligt krävs bättre kunskapet och mer samarbete mellan mödra- och barnhälsovård, barnomsorg, skola, socialtjänst och missbruksvård. I bokens andra del finns konkreta förslag på hur man kan arbeta för att stödja både barn och föräldrar i familjer med missbruk, men även i andra utsatta familjer. Boken vänder sig både till studerande och yrkesverksamma. Tredje reviderade upplagan.
Family burden and participation in care: Differences between relatives of patients admitted to psychiatric care for the first time and relatives of re-admitted patients
Östman, M.
(2004)
Family burden and participation in care: Differences between relatives of patients admitted to psychiatric care for the first time and relatives of re-admitted patients
Östman, M.
(2004)
Family caregivers--women between job responsibilities and home nursing
Hammer, R.
(2004)
Finansiell och politisk samordning i den lokala välfärden: En ny politisk arena för gemensamma prioriteringar mellan huvudmän. CEFOS rapport nr. 20.
Fridolf, M.
(2004)
I denna rapport beskrivs politikeruppdraget vid politisk och finansiell samordning. Vid samordning samlas resurser över organisationsgränser för att användas gemensamt. Det unika med politisk och finansiell samordning är att huvudmännen har ett gemensamt kostnadsansvar. Resurserna kan omfördelas mellan huvudmän. Politisk samordning innebär att en politisk arena skapas som prioriterar resurser över organisationsgränser. I rapporten påvisas att politikeruppdraget skiljer sig mycket åt beroende på vilken inriktning som finns på olika områden; mot samordningsperspektiv eller befolkningsperspektiv. Inriktningen har skapats av vald struktur men också av hur aktörerna ser på sin roll och dess utövande. En ny struktur skapas på den parlamentariska arenan. I denna samordning betonas politikernas roll. Rollskillnader utvecklas dock mellan olika politiker, vilket gör att de får olika betydelse och status. Detta påverkar i sin tur deras inflytande. En samförståndspolitik utvecklas, där politikerna inte driver partipolitik. Genom politisk samordning skapas förutsättningar för gemensamma prioriteringar av behov. Den nya strukturen påverkar politikerna som aktörer i samtliga områden.
I rapporten återges ambitioner med finansiell och politisk samordning samt hur en ny politisk struktur skapas. Dessutom beskrivs politikernas motiv till engagemang, hur de ser på sin uppgift samt hur politisk organisering genom behovsidentifiering, prioritering, resursmobilisering och utvärdering utvecklas. Studien behandlar också politikernas betydelse för samarbete mellan chefer och professionella.
Framtidens anhörigomsorg - kommer de anhöriga vilja, kunna, orka ställa upp för de äldre i framtiden?
Sundström, G., & Johansson, L.
(2004)
Framtidens anhörigomsorg. Kommer de anhöriga vilja, kunna, orka ställa upp för de äldre i framtiden? (förf. Johansson L. & Sundström G.)
Socialstyrelsen
(2004)
Från anhörigvårdare och förälder till förälder och anhörig (Examensarbete, 2004:15).
Gustavsson, M., & Lindström, H.
(2004)
Från anhörigvårdare och förälder till förälder och anhörig, 2004:15).
Gustavsson, M., & Lindström, H.
(2004)
Förskola i brytningstid
Skolverket
(2004)
Skolverket presenterar den första nationella utvärderingen av förskolan efter reformen 1998 då förskolan fick en läroplan och blev det första steget i det samlade utbildningssystemet för barn och ungdom. Utvärderingens övergripande syfte är att belysa hur förskolan utvecklats i olika avseenden efter reformen samt att ge en lägesbeskrivning av reformens effekter. Utvärderingen visar på att förskolans utveckling innehåller både positiva och problematiska inslag. Förskolans läroplan har tagits emot positivt i kommuner och förskolor, men har man lyckats uppnå det som var en av de viktigaste målen med reformen "en likvärdig förskola"?Förskolan har dessutom i en rad avseenden närmat sig skolan, i vissa fall på bekostnad av sin särart. Barns prestationer kartläggs och bedöms i ökad omfattning, vilket strider mot grundtankarna i reformen.
Förstudie 2004 : Kommunernas behov av e-tjänster för vård och omsorg
Kemlén, A.
(2004)
Föräldraskap och expertis. Motsättningar kring handikappade barn
Åkerström, Malin
(2004)
När man möter en mamma eller pappa berättar de kanske om sitt barn. Men är barnen deras? I många andra sammanhang talas det om våra barn: skolan, sjukvården, föreningar gör också anspråk på att äga barnen. Världen kring handikappade barn sätter förhållandet på sin spets: där finns en myriad av yrken och institutioner, som hävdar att de både vet mer och vet bäst.
Experternas kunskaper är eftersökta samtidigt skall de uppvisa en måttfull och balanserad expertis; föräldrarnas kompetens skall erkännas enligt de föräldrar som intervjuas i boken. Föräldrarna till döva, hjärnskadade, diabetessjuka barn och barn med andra handikapp ger sin bild av mötet med sjukvården, daghemmet och skolan: en bild som är drastisk och dramatisk och skildrar dilemman, strider samt konkurrensen mellan med såväl professionella som andra föräldrar. Författaren hävdar emellertid att denna bild kan översättas till de flesta moderna föräldraskap: här ges den i en kondenserad och tillspetsad form.
Förändrad tillämpning av offentlig äldreomsorg : ett hot mot målsättningen om demokrati och jämställdhet
Sand A-B.
(2004)
Förändrad tillämpning av offentlig äldreomsorg – ett hot mot målsättningen om demokrati och jämställdhet Artikeln handlar om några effekter av den förändrade inriktningen på det offentliga ansvaret för äldreomsorgen och det är anhöriga till hjälpbehövande äldre som står i fokus.
Förändrad tillämpning av offentlig äldreomsorg : Ett hot mot målsättningen om demokrati och jämställdhet : Tema : Social omsorg
Sand, A.-B. M.
(2004)
Förändrad tillämpning av offentlig äldreomsorg : ett hot mot målsättningen om demokrati och jämställdhet : tema : social omsorg
Sand, A.-B.
(2004)
God vård i livets slut. En kunskapsöversikt om vård och omsorg om äldre, underlag från experter
Ternestedt, B.-M.
(2004)
Groups for siblings of children who have special needs
Nesa, M. and K. Strohm
(2004)
Health and care in an enlarged Europe
Alber, J. & Köhler, U.
(2004)
Health and Care in an Enlarged Europe.
Alber J, Köhler U.
(2004)
Examining quality of life in 28 European countries, including the acceding and candidate countries as well as the current Member States of the EU, this report explores how Europeans perceive their health, to what extent they display healthy and unhealthy lifestyles, how easily they can access their national health care system and how satisfied they are with its performance.The analysis is based on data from the European Commission's Eurobarometer survey carried out in the acceding and candidate countries in Spring 2002 and standard EU 15 Eurobarometers. A summary of this report is also available
Hemmet som arenan för äldres och funktionshindrades rehabilitering
Tamm, Maret & Lindqvist, Rafael
(2004)
Avhandlingens övergripande syfte var att studera multidisciplinära teams,
äldre personers och familjemedlemmars erfarenheter av hemrehabilitering.
Avhandlingen baseras på fyra studier (I-IV). Alla studierna har en kvalitativa
beskrivande design. Datamaterialet utgjordes av fokusgruppsintervjuer med
personal arbetande i team i kommunal hälso- och sjukvård (I), intervjuer med
äldre personer, över 65 år, som vårdats på sjukhuset och därefter fortsatt
rehabilitering i hemmet (II,III,IV), samt familjemedlemmar involverade i de äldres
rehabilitering (II).
Studie I visade på betydelsen av att möta äldres individuella behov och att arbeta
utifrån ett rehabiliterande förhållningssätt i avsikt att ge en hjälp som inte innebär
att ta över handlingar från den äldre. Väsentligt var att i teamet reflektera över hur
man agerar utifrån den egna professionen för att kunna utveckla ett
rehabiliterande förhållningssätt i det dagliga arbetet. I resultatet framkom att
teamen uppfattade hemrehabilitering som positiv för de äldre, men mindre
lämpligt om de äldre var svårt sjuka och de kände sig otrygga i sitt hem. Respekt
för de äldres integritet i deras hem och att göra de närstående delaktiga i
rehabiliteringen betonades. Resultatet visade på att för att kunna utveckla
samarbetet i teamet finns behov av att diskutera varje professions ansvarsområde
och klargöra gränser mellan varandras ansvarområden. Behovet av att tillföra
psykosocial kompetens i teamet framhölls för att möta de äldres behov. I studie II
framkom att de äldre upplevde rehabiliteringen vara en balansgång i att känna av
vad kroppen orkar med för dagen och vad som är realistiskt att uppnå för att
känna välbefinnande. Tryggheten i att ha någon i familjen nära sig i hemmet var
oumbärligt för att våga utföra träning och vardagliga aktiviteter. Resultatet visar
på de äldres upplevelse av otillfredsställelse med att vara beroende av andra.
Familjemedlemmar var engagerade i de äldres rehabilitering genom att finnas till
hands, hjälpa till och vara stödjande, vilket var en självklar handling men också
utmanande i att kunna hjälpa på rätt sätt. Bristande information om hjälpmedels
funktion och användning skapade frustration. Resultatet visar att både de äldre
och deras familjemedlemmar ser hemmiljön bidra till att underlätta rehabilitering.
History of the medical home concept
Sia, C., Tonniges, T. F., Osterhus, E., & Taba, S.
(2004)
History of the medical home concept
Sia, C., Tonniges, T. F., Osterhus, E., & Taba, S.
(2004)
Hur stöttas den som hjälper? : Kommunernas stöd till anhöriga som vårdar äldre närstående (Meddelande / Länsstyrelsen, Jönköpings län; 2004:28).
Karlsson, M.
(2004)
Incidence and costs of accidents among attention-deficit/hyperactivity disorder patients
Swensen, A., Birnbaum, H. G., Ben Hamadi, R., Greenberg, P., Cremieux, P., & Secnik, K.
(2004)
PURPOSE:
The purpose is to analyze the incidence and costs of accidents among Attention-Deficit/Hyperactivity Disorder (ADHD) patients.
METHODS:
The analysis relied on administrative medical, pharmaceutical, and disability claims for a national manufacturer's employees, spouses, dependents, and retirees (n > 100,000). Accidental injuries were identified using ICD-9 codes for injuries or poisoning treatment. ADHD sample consists of individuals with at least one claim for ADHD during 1996-98 (NADHD = 1308), which was compared with a matched control sample. In addition to descriptive statistics, multivariate analysis involving logistic regression was used to model the probability of having an accident claim in 1998. This probability was estimated for the whole population, for adults alone, for children (under age 12 years), and for adolescents (age 12-18 years). We also estimated a generalized estimation equation (GEE) model to account for the possibility of multiple accident claims for a single patient.
RESULTS:
ADHD patients had a greater probability of having at least one accident claim than their controls for children (28% vs. 18%), adolescents (32% vs. 23%), and adults (38% vs. 18%). Although ADHD patients' costs were greater than their controls for adults ($483 vs. $146), there was no difference for children or adolescents. However, among patients with accident claims, the average number of accident claims was similar for both groups (3.6 vs. 3.5) and costs were not statistically different. The multivariate analysis confirms this utilization pattern: the odds of having an accident for ADHD patients were 1.7 times greater than for controls.
CONCLUSIONS:
ADHD was a significant predictor of having an accident claim. However, for people with an accident claim, ADHD patients and controls had a similar number of accident claims and costs.
Inequalities in quality of life among older people from different ethnic groups
Butt, J. and J. Moriarty
(2004)
Informal care and support for carers in Sweden: Patterns of service receipt among informal caregivers and care recipients
Jegermalm, M.
(2004)
Informal care for the elderly. Preliminary background report for Norway, prepared for EUROFAMCARE
Ingebretsen, R. and J. Eriksen
(2004)
Informal care for the elderly. Preliminary background report for Norway, prepared for EUROFAMCARE
Ingebretsen, R. and J. Eriksen
(2004)
Informal care for the elderly. Preliminary background report for Norway, prepared for EUROFAMCARE
Ingebretsen, R., Eriksen, J.
(2004)
Informal care for the elderly. Preliminary background report for Norway, prepared for EUROFAMCARE
Ingebretsen R, Eriksen J.
(2004)
Informal caregiving in old age : Content, coping, difficulties and satisfaction
Kristensson Ekwall, A.
(2004)
Older people take a great share of caregiving responsibility already and thus understanding of their strain, coping and satis-faction is required. The aim was to investigate dimensions of caregiving activities among elderly (75+) caregivers and to study the dimensions in relation to health-related quality of life (Paper I). It was also to investigate quality of life in relation to loneliness, caregiving, social network, gender, age and economic status among men and women in a population-based sample aged 75 or older (Paper II). Another aim was to investigate coping strategies and sense of coherence (SOC) in relation to gender, the extent of care, caregiving activities and QoL in a sample of caregivers aged 75+ (n=171) and to explore the reliability and validity of an instrument assessing coping (CAMI) (Paper III). It was also to study correlation between gender, extent and content of the care, coping, satisfaction and difficulties in the caregiving situation and to identify clusters of caregivers (Paper IV), and to psycho-metrically explore two instruments assessing satisfaction (CASI) and difficulties (CADI) in the care (Paper IV) as well as sources of satisfaction together with caregiving difficulties. Responses to a Swedish postal survey (n=4278) (Paper II) showed that 18% helped another person due to that person's impaired health (Paper I), 41.6% women among the caregivers, mean age 81.8 (SD 4.96) for men 81.7 (SD 4.32). The second sample included 171 caregivers (59.6% men, mean age 82.1, SD 4.6, women 80.6, SD 3.9), response rate 47%, of whom almost 70% provided help every day (Papers III & IV). Adapting their activities to be prepared if something happened (52%), having regular contact to prevent problems (35%), helping in contacts with the hospital (57%), helping with IADL (49%), PADL (14%), medical care (11%) and helping to improve functions (14%) were activities reported. Adapting own activities, regular contact, weak economy and needing help with IADL oneself predicted low MCS-12 (Paper I). Caregivers had a larger social network and reported feelings of loneliness less often than non-caregivers, indicating that caregiving takes place mainly in the phase when the older person is healthy (Paper II). There were gender differences in loneliness, with women being more lonely. Loneliness and a small network were associated with low QoL among caregivers as well as elderly in general (Paper II). The 25% of the respondents (n=171) with the lowest MCS-12 scores were more dissatisfied with the information given about the practical and medical care than those with higher scores (Paper III). Higher MCS-12 predicted with using self-sustaining coping and a high SOC while poor economy and asking for social and practical support predicted low scores. The most frequent source of satisfaction was seeing the care recipient happy (77%) and problems with mobility in the person cared for (28%) and difficulties sleeping were frequently reported (14%) which shows that feelings of satisfaction were more frequent than experiencing difficulties. The difficulties did not differ between men and women.
Informal home caregiving in a gender perspective: A selected literature review
Lindqvist G, Håkansson A, Petersson K.
(2004)
Informal home caregiving in a gender perspective: A selected literature review
Lindqvist, G., Håkansson, A., & Petersson, K.
(2004)
Informal home caregiving in a gender perspective: A selected literature review
Lindqvist, G., Håkansson, A., & Petersson, K.
(2004)
An informal home caregiver is a person (family member or friends) who takes care of or participates to some degree in the care of a person in the home. This study provides a selected review of literature published 1982–2003 of the informal home caregiving from a gender perspective. A computer-aided search using MEDLINE and CINAHL was carried out. The final number of articles was 45. The main findings were that there are differences in informal caregiving due to gender. Gender differences were found in categories such as affected lifeworld, health problems, managing ability and caregivers experience from caring for a care receiver with different diseases. It is of importance that the informal caregiver is involved in the planning and that a planning act takes place. If society involves the informal home caregiver we can avoid the caregiver being the hidden victim of illness and disability. It is known that burdensome caregiving can result in encroachment due to exhaustion.
Infrared-based communication augmentation system for people with multiple disabilities
Chen SC, Tang FT, Chen YL, Chen WL, Li YC, Shih YY, et al.
(2004)
Purpose: This study describes an eyeglass-type infrared-based communication board for the nonspeaking with quadriplegia. Method: This system is composed of four major components: a headset, an infrared transmitting module, an infrared receiving/signal-processing module, and a main controller, the Intel-8951 microprocessor. This design concept was based on the use of an infrared remote module fastened to the eyeglasses which could allow the convenient control of the input motion on the keys of a communication board, which are all modified with infrared receiving/signal-processing modules. For system evaluation, 12 subjects (all men, 21-45 years old, six normal subjects as the control group and six nonspeaking with quadriplegia as the experimental group) were recruited. Results: The average accuracy of the control group and the experimental group were 93.1 ± 4.3% and 89.7 ± 5.5%, respectively. The average time cost of the control group and the experimental group were 78.3 ± 8.7 s and 89.9 ± 10.2 s, respectively. An independent t-test revealed that the differences in the average accuracy and the average time cost of the control group and the experimental group were not significant (p > 0.05). Conclusions: The increase of opportunity to communicate using the infrared-based communication board would help people with multiple disabilities to socialize actively. © 2004 Taylor & Francis Ltd.
Internet-based support for rural caregivers of persons with stroke shows promise.
Pierce LL, Steiner V, Govoni AL, Hicks B, Cervantez Thompson TL, Friedemann ML.
(2004)
The purpose of this pilot study was to test the feasibility of providing Internet-based education and support intervention to caregivers living in rural settings, including caregivers' satisfaction with the intervention. A secondary aim was to explore their experience of caring. Nine adult caregivers of persons with stroke were enrolled in this descriptive study from rehabilitation centers in northwestern Ohio and southeastern Michigan. They were given access to the intervention, Caring∼Webe©, for three months. Data were collected from participants' bimonthly interviews, as well as e-mail communications. Procedures were tested and found valid, and caregivers were willing and able to use Caring∼Web. Using Friedemann's framework of systemic organization, a coding system was developed for analyzing the qualitative data on the experience of caring. Five main themes emerged from these data. These findings help expand knowledge about caregivers dealing with stroke.
Intimate partner violence and birth outcomes: A systematic review
Boy, A., & Salihu, H. M.
(2004)
Abstract
OBJECTIVE:
There is a lack of comprehensive information on the relationship between domestic physical and emotional violence and pregnancy outcomes. Accordingly, we undertook this systematic review of the literature to examine the evidence on the association between physical and emotional abuse and pregnancy outcomes.
STUDY DESIGN AND METHOD:
A comprehensive literature search was carried out using pertinent key words that would retrieve any research article pertaining to the topic. This was supplemented by cross-referencing of the articles. A total of 296 articles were found; case reports and articles that failed to satisfy the study inclusion criteria were removed and 30 articles were included in the review.
RESULTS:
Overall, adverse pregnancy outcomes, including low birth weight, maternal mortality and infant mortality are significantly more likely among abused than nonabused mothers. Abused pregnant mothers present more often than nonabused mothers with kidney infections, gain less weight during pregnancy, and are more likely to undergo operative delivery. Fetal morbidity, such as low birth weight, preterm delivery, and small size for gestational age are more frequent among abused than nonabused gravidas. The risk for maternal mortality is three times as high for abused mothers. Black abused mothers are 3-4 times as likely to die as their white counterparts. Unmarried victims are also three times as likely to die as married abused mothers. Intimate partner violence is also responsible for increased fetal deaths in affected pregnancies (about 16.0 per 1000).
CONCLUSION:
Intimate partner violence is often a life-threatening event to both the mother and the fetus. This, in addition to the heightened level of feto-maternal morbidity and mortality, represents clear-cut justification for routine systematic screening for the presence of abuse during pregnancy.
Jag är hans livslina! : makars upplevelser av delaktighet i omvårdnaden på sjukhem
Kvarnström, L.
(2004)
Jämställd socialtjänst? Könsperspektiv på socialtjänsten
Socialstyrelsen
(2004)
Kommunikation genom teknik–ur ett vardagsperspektiv
Rydeman, B., & Zachrisson, G.
(2004)
En studie i två delar rörande målgruppen barn med grava rh – kontaktanvändare: Del 1: Inventering och beskrivning av dynamiska kommunikationsprogram och styrsätt (bl.a. MindMouse/CyberLink), del 2: Kommande interventionsstudie.
Projektet har en egen hemsida www.kommed.nu där du kan läsa mer. Där finns bl a rapporter och en mängd annan intressant information att hämta.
Projektansvariga: Gerd Zachrisson DART och Bitte Rydeman, DAKO i Halland.
Medel: 2-årigt projekt med stöd från HI - "IT i praktiken"
Kort om ADHD hos barn och vuxna. En sammanfattning av Socialstyrelsens kunskapsöversikt
Mossler & Kadesjö
(2004)
ADHD – uppmärksamhetsstörningar och impulsivitet/hyperaktivitet (attention deficit hyperactivity disorder) – bedöms vara ett av de mest studerade tillstånden inom medicinen. Man har beräknat att ungefär tre till sex procent av alla barn i skolåldern har ADHD. Det är ca två till tre gånger vanligare med ADHD hos pojkar än flickor. Huvudsymtomen vid ADHD är uppmärksamhetsstörning, impulsivitet och hyperaktivitet/överaktivitet. Barn med ADHD har svårt att vänta, att kontrollera känslor och humör. Många har ett oförutsägbart beteende. Flertalet har problem med att planera
och organisera sin tillvaro – har brister i vad som kallas hjärnans exekutiva funktioner. En betydande andel barn med ADHD har svårigheter i samspelet med andra. De kan ha svårt att finna meningsfulla fritidsaktiviteter. Det är mycket vanligt att barn och ungdomar med ADHD är ängsliga, osäkra och saknar tilltro till sin förmåga. Många misslyckanden ökar risken för uppgivenhet, oro och depression.
Kunskap om familjedaghem
Karlsson, Malene
(2004)
Känslornas betydelse I funktionshindrade barns livsvärld
Hautaniemi, Bozena
(2004)
The aim of my study is to describe and understand disabled children's special way of understanding and relating to the surrounding world. The thesis is based on an empirical study of six severely disabled children, lacking language and speech, aged from nine months to five years. The children were studied by video recordings in Händelsriket, a center organised to offer them different kinds of rich stimulation. One important finding was that the children expressed a non-verbal, meaning making competence that I decided to further explore. First, I tried to interpret the children's competence in the frame of psychoanalytic and psychodynamic theories, which turned out to be difficult as these theories were based on assumptions linked to the tradition of René Descartes, making a clear difference between Cogito and body, nature and culture. In this tradition, human consciousness is based on the acquisition of language and the development of the sphere of symbols. As a consequence, the mentioned theories could not help us to understand the embodied, non-verbal competence of the disabled children. Many of these theorists also argue that their theories have little relevance for disabled children.However, the phenomenological tradition, inspired by among others Edmund Husserl, Martin Heidegger and Maurice Merleau-Ponty, was of much more help in the analysis of the disabled children's activities in Händelsriket. In the theory of the lifeworld, Husserl´s and Merleau-Ponty´s, for instance, introduces two different kinds of intentionality indicating an embodied consciousness of great relevance to the empirical findings.Another important empirical finding was that feelings, and the expression of feelings, seemed to play an important role in the children's non-verbal, meaning making competence. As a consequence of this I have decided to include a discussion of research on feelings, emotions and affects. Based on the critique of the distinction between feelings, emotions and affects in social and anthropological research, I have decided to base my analysis on the concept of feelings.In the empirical analyses I discuss the role of feelings in the disabled children's perception, consciousness, communication and interaction with other people. I found that the meaning making processes based on feelings and expression of feelings contributed to the development of the children's personal styles of understanding their life-world. It also played an important role in the thematisation of their experiences, antecipations of objects, extensions and restrictions of their experiential horizons and their mastering of challenging experiences. The feelings also played important roles in the children's communicative competence and in their interaction with other people and the development of mutual closeness, understanding and community. In short, the feelings could be understood as important constituents of the life-world of the severely disabled children, their understanding of themselves and of the surrounding world.
Kärlek och stålull
Pipping, Lisbeth
(2004)
"Min barndom var full av slag och psykisk misshandel. Jag var alltid rädd, varje dag, varje timme, varje minut och varje sekund. Rädd för min mamma, rädd för mina klasskamrater, rädd för han som utnyttjade oss, rädd för allt. Det fanns nästan ingen trygghet att finna i min barndom.
Jo, det fanns en plats där jag kunde känna mig trygg, även om det tog tid att våga vara trygg hos mina sommarföräldrar. Deras gård var en oas. Där fann jag en trygghet under de sommarveckor jag bodde
långt bort från mamma. Där fick jag provsmaka hur det kunde vara och hur det borde vara att få vara ett litet barn. Men det var bara de där sommarveckorna. En tid som liksom bara var till låns för snart skulle jag hem till min mamma igen, tillbaka till rädslan och utsattheten. Jag ville inte åka hem till när sommaren var slut, jag grät då jag tvingades att åka till mamma igen"
I Kärlek och stålull skildrar Lisbeth Pipping på ett personligt och levande sätt sin uppväxt med en utvecklingsstörd mamma, en svårt alkoholiserad pappa och två småsystrar. Läsaren får ta del av en barndom i misär, bristande omsorg och kärlek...
Kärlek. Drivkraft bakom anhörigvård
Rudenstam, C.
(2004)
Kärleken prövas när livspartnern blir vårdare : tema : kärlekens låga
Sand, A.-B.
(2004)
Exposure to war trauma and PTSD among parents and children in the Gaza strip.
Thabet, A. A., Abu Tawahina, A., El Sarraj, E., & Vostanis, P.
(2008)
OBJECTIVE:
Exposure to war trauma has been independently associated with posttraumatic stress (PTSD) and other emotional disorders in children and adults. The aim of this study was to establish the relationship between ongoing war traumatic experiences, PTSD and anxiety symptoms in children, accounting for their parents' equivalent mental health responses.
METHODS:
The study was conducted in the Gaza Strip, in areas under ongoing shelling and other acts of military violence. The sample included 100 families, with 200 parents and 197 children aged 9-18 years. Parents and children completed measures of experience of traumatic events (Gaza Traumatic Checklist), PTSD (Children's Revised Impact of Events Scale, PTSD Checklist for parents), and anxiety (Revised Children's Manifest Anxiety Scale, and Taylor Manifest Anxiety Scale for parents).
RESULTS:
Both children and parents reported a high number of experienced traumatic events, and high rates of PTSD and anxiety scores above previously established cut-offs. Among children, trauma exposure was significantly associated with total and subscales PTSD scores, and with anxiety scores. In contrast, trauma exposure was significantly associated with PTSD intrusion symptoms in parents. Both war trauma and parents' emotional responses were significantly associated with children's PTSD and anxiety symptoms.
CONCLUSIONS:
Exposure to war trauma impacts on both parents' and children's mental health, whose emotional responses are inter-related. Both universal and targeted interventions should preferably involve families. These could be provided by non-governmental organizations in the first instance.
Fact or fiction: Diagnosing borderline personality disorder in adolescents.
Miller AL, MuehleNkamp JJ, Jacobson CM.
(2008)
Borderline Personality Disorder (BPD) has long been considered a mental health problem that results in considerable costs in terms of human suffering and psychiatric expenses among adult patients. Although the diagnosis of BPD for adolescents is frequently used in clinical settings, the field of mental health has questioned whether one should diagnose BPD among adolescents. This paper reviews the recent empirical literature (identified through PsycINFO 1980 to present) to evaluate prevalence, reliability, and validity of a BPD diagnosis in adolescents. It is concluded that the features BPD diagnoses in adolescents are comparable to those in adults. Furthermore, there appears to be a legitimate subgroup of adolescents for whom the diagnosis remains stable over time as well as a less severe subgroup that moves in and out of the diagnosis. While caution is warranted, formal assessment of BPD in adolescents may yield more accurate and effective treatment for adolescents experiencing BPD symptomatology. More longitudinal research is necessary to further explicate the issues of diagnosing BPD in adolescents.
Familial caregivers of older adults
McClure, C. & Sanders, S.
(2008)
Familial Caregivers of Older Adults
McClure Cassie, K. & Sanders, S
(2008)
Familien til pasienter med demens
Ulstein, I.
(2008)
Families, work, and an aging population: developing a formula that works for the workers.
Wagner, D. L.
(2008)
Familjemedverkan inom barnonkologin
Kästel, Anne
(2008)
Family as failure? The role of informal help-givers to disabled people in Sweden.
Jeppsson Grassman, E., Whitaker, A. & Taghizadeh Larsson, A.
(2008)
Family caegiver´s future planning for younger and older adults with serious mental illness (SMI).
Corsentino, E. A., Molinari, V., Gum, A. M., Roscoe, L. A., & Mills, W. L.
(2008)
This study examines plans for future caregiving made by family members of younger (n =59) and older adults (n =16) with serious mental illness (SMI). An online survey was advertised through a newsletter of the National Alliance on Mental Illness. Qualitative analyses yielded four areas of caregiver concern: health of the care recipient over time, ability of caregivers to sustain support, social support available for the care recipient, and financial burden of care. Despite these concerns, few caregivers reported completed plans for future caregiving. One fourth of the caregivers had made no plans, nor had they discussed future caregiving with others. Although most would prefer other relatives to assume care in the event they could not sustain support, these expectations may not be communicated openly. Generating discussion on this pertinent topic has implications for the aging society regarding how best to care for those with SMI and their caregivers.
Family Caregivers of Older Adults: A Life Span Perspective
Roberto, K. A. & Jarrott, S. E.
(2008)
Family caregivers of older relatives: Ways of coping and change in distress
Knussen, C., Tolson, D., Brogan, C. A., Swan, I. R. C., Stott, D. J. & Sullivan, F.
(2008)
Family caregiving in bipolar disorder: caregiver consequences, caregiver coping styles, and caregiver distress
Goossens, P.J.J., Van Wijngaarden, B., Knoppert-Van der Klein, E.A.M. Van Achterberg, T
(2008)
AIMS:
This study investigated the consequences caregivers of outpatients with bipolar disorder are confronted with, the distress they experience and their coping styles.
METHODS:
Caregivers (n = 115) were asked to complete the Involvement Evaluation Questionnaire (IEQ) to measure caregivers' consequences, the Utrecht Coping List (UCL) to measure caregivers' coping styles, and the 12-item General Health Questionnaire (GHQ-12) to measure caregiver distress. Scale (sub)scores were calculated and relationships between the results were explored.
RESULTS:
Caregiver consequences were found to be limited, although approximately 30% reported distress. Male caregivers used a more avoiding coping style and undertook activities to provide diversion. Female caregivers used a less active approach and sought less social support. Correlations were found between the IEQ overall score and its subscales 'tension' and 'worrying' and the UCL subscales 'palliative reaction pattern' and 'passive reaction pattern'. Distress appears to occur more often in caregivers who report more consequences, tend to use a more avoiding coping style, and have a more passive reaction pattern.
CONCLUSIONS:
Clinicians should assess symptoms of caregiver distress. When caregiver distress is noticed, efforts should be undertaken to support the caregiver and teach them skills to cope effectively with the consequences they experience in order to stay well.
Family Carers' experiences using Support Services in Europe: Empirical Evidence from the EUROFARMCARE study
Lamura, G., Mnich, E., Wojszel, B., Nolan, M., Krevers, B., Mestheneos, L., et al.
(2008)
Family Connections: An Education and Skills Training Program for Family Member Well Being: A Leader's Perspective
Penney, D.
(2008)
This chapter describes the Family Connections (FC) program, a 12-week, two-hour, interactive, manualized, education/skills training course for relatives of persons with borderline personality disorder (BPD) that is co-led by trained family members. It explicates the training of co-leaders, the registration process for participants, a detailed description of the curriculum's six modules, and consideration of the on-going challenges faced by participants after the program ends. The introduction describes historical development of the program. Subsequent sections are organized into two parts: each opens with a segment that presents key ideas, which is followed by 'Leader Observations' the reflections of a seasoned leader. Adapted from the source document. COPIES ARE AVAILABLE FROM: HAWORTH DOCUMENT DELIVERY CENTER, The Haworth Press, Inc., 10 Alice Street, Binghamton, NY 13904-1580
Focusing on parental and young people's substance misuse: exploring the links
Harwin J.
(2008)
From user needs to system specifications: multi-disciplinary thematic seminars as a collaborative design method for development of health information systems
Scandurra, I., Hagglund, M. & Koch, S
(2008)
Från socialbidrag till äldreförsörjningsstöd : en reform ur äldre invandrares perspektiv. Lic.,
Albertsson, M.
(2008)
Functional ability and health complaints among older people with a combination of public and informal care vs. Public care only
Karlsson, S., Edberg, A.-K., Westergren, A., & Hallberg, I. R.
(2008)
Functional ability and health complaints among older people with a combination of public and informal care vs. Public care only.
Karlsson, S., Edberg, A.-K., Westergren, A., & Hallberg, I. R.
(2008)
Föräldralärande inom barnhabilitering. Teori och praktik
Solders, Lena
(2008)
Föräldrautbildning erbjuds idag bl.a. inom förskola/skola, socialtjänst liksom hälso- och sjukvård. Lärandet kan beskrivas ur olika perspektiv. Om barnet är det primära brukar man tala om Parent Education, när fokus ligger på familjen som helhet talar man om Parent Training och när det är föräldrarna som står i centrum för utbildningsinsatsen säger man ofta Parent Support. En viktig tanke är att få tillstånd ett bra samarbete mellan föräldrar och personal. Det är nödvändigt för att skapa större delaktighet och ett bättre lärande för föräldrar.
Föräldrastöd - en vinst för alla. Nationell strategi för samhällets stöd och hjälp till föräldrar i deras föräldraskap. Statens offentliga utredningar
SOU
(2008)
Gamlas olycka är barnens fel : vi vuxna måste ta hand om våra gamla föräldrar och sluta lägga ansvaret på staten
Schulman, C.
(2008)
Glöm ej dom som glömmer: Studie av stöd och insatser för unga personer med demenssjukdom och deras anhöriga i en kommun i Mellansverige
Strömqvist, Lina
(2008)
Syftet med studien var att ta reda på hur insatser, stöd och samordning var utformat kring unga personer med demenssjukdomar och deras anhöriga i en kommun i Mellansverige. Med unga personer med demenssjukdomar avses de som är yngre än 65 år när de får diagnosen. De här personerna är mitt i livet när de drabbas av en sjukdom som förknippas med äldre människor och åldrande. Livssituationen kan se helt annorlunda ut än för äldre personer som drabbas av sjukdomen, därför bör stödet till dem vara utformat på ett annat sätt. Studien Metoden som användes i studien var kvalitativa intervjuer. Urvalet gjordes genom ett både strategiskt och snöbollsurval för att få en översikt av hur samordning, insatser och stöd var utformat i kommunen. Respondenterna i studien var en kurator inom landstinget, en biståndshandläggare, en LSS-handläggare, en demensspecialiserad undersköterska och en anhörigkonsult på kommunen. Som analysmetod användes Grounded Theory då forskningsmaterialet om unga personer med demenssjukdomar inte var tillräckligt omfattande.
Group living homes for older people with dementia: The effects on psychological distress of informal caregivers
te Boekhorst, S., Pot, A. M., Depla, M., Smit, D., de Lange, J. & Eefsting, J.
(2008)
Hälsa på lika villkor? Hälsa och livsvillkor bland personer med funktionsnedsättning
Boström, Gunnel
(2008)
I den äldres tjänst: äldreassistent - ett framtidsyrke
SOU 2008:126
(2008)
I den äldres tjänst: äldreassistent - ett framtidsyrke
SOU 2008:126
(2008)
I rörelse mot hopp - hälsostödjande familjesamtal i palliativ vård
Benzein, E.,
(2008)
I tredje åldern med funktionshinder
Taghizadeh Larsson, Annika
(2008)
Vi har hittills haft begränsad kunskap om funktionshindrade människors liv över tid och om innebörden i att leva med funktionshinder under många år. Vad innebär det att åldras med funktionshinder? Hur gestaltar sig "äldreblivandet" om man redan har betydande funktionsnedsättningar sedan tidigare i livet och kanske tvingats lämna arbetslivet långt före gängse pensionsålder? Hur är det att, som en till åren kommen förälder, fortfarande vara den som hjälper sitt vuxna, funtionshindrade barn? Hur ser den formella och informella omsorgssituationen ut? Det är frågor som den här boken belyser och den fyller därmed ett viktigt kunskapsbehov. Boken utgår från ett livsloppsperspektiv. Den centrala frågan är sålunda hur livet idag gestaltar sig för funktionshindrade människor som vuxit upp och levt under vissa historiska villkor. Här ryms även ett anhörigperspektiv där denna fråga studeras på motsvarande sätt. Bokens sex kapitel diskuterar de här frågorna med olika tonvikt och med utgångspunkt från både fysiskt och psykiskt funktionshindrades förhållanden. Samtliga författare bedriver forskning med anknytning till bokens huvudfråga. Att åldras med funktionshinder riktar sig främst till högskolestuderande inom samhälls- och beteendevetenskap, socialt arbete, social omsorg och vård, liksom till yrkesverksamma inom fältet. Den kan också vara värdefull för en intresserad allmänhet.
I´m not an outsider, I´m his mother! A phenomenological enquiry into carer experiences of exclusion from acute psychiatric settings
Wilkinson, C. and S. McAndrew
(2008)
Contemporary standards and policies advocate carer involvement in planning, implementing, and evaluating mental health services. Critics have questioned why such standards and policies fail to move from rhetoric to reality, this particularly being applicable to carer involvement within acute psychiatric settings. As there is only limited UK research on this topic, this interpretive phenomenological study was undertaken to explore the perceived level of involvement from the perspective of carers of service users who were admitted to acute inpatient settings within the previous 2 years. Interviews were conducted with four individuals who cared for a loved one with a mental illness. The interview analysis was influenced by Van Manen, whose interpretive approach seeks to generate a deeper understanding of the phenomenon under study. Four main themes emerged: powerlessness, feeling isolated, needing to be recognized and valued, and a desire for partnership. The findings reflect the views expressed by carers in other studies, identifying that while carers seek to work in partnership with health-care professionals, at a clinical level they often feel excluded. The study concludes by discussing ways of improving and promoting carer involvement and advocating a partnership in care approach within acute psychiatry
I’am the king of the castle: the sibling bond – art therapy groups with siblings care.
Boronska, Teresa
(2008)
Implementation, process, and preliminary outcome evaluation of two community programs for persons with stroke and their care partners
Huijbregts MPJ, Myers AM, Streiner D, Teasell R.
(2008)
Purpose: This evaluation compared a new self-management program with land and water exercise (Moving On after STroke or MOST) to a standard education program (Living with Stroke or LWS). Participants: Of 30 persons with stroke (average age 68 and 2 years post stroke), 18 selected MOST and 12 chose LWS. Sixteen care partners participated. Method: Assessments at baseline, program completion, and 3-month follow-up included the Reintegration to Normal Living (RNL) Index, Activity-specific Balance Confidence (ABC) scale, exercise participation, and goal attainment (for the MOST group). Program delivery costs were calculated and focus groups conducted to examine participant expectations and experiences. Results: Social support was an important benefit of both programs, but only MOST participants improved significantly on the RNL (p < .05) and ABC (p < .001). Seventy-eight percent of all short-term personal goals in MOST were achieved, and overall goal attainment was above the expected level. At follow-up, a higher percentage of MOST participants were enrolled in exercise programs (p < .05). Conclusion: Although self-management programs with exercise are more costly to deliver than standard educational programs, these preliminary results indicate that such programs may be more effective in helping persons with stroke and care partners deal with the challenges of living with stroke.
Implementing child-focused family nursing into routine adult psychiatric practice: hindering factors evaluated by nurses
Korhonen, T.,Vehviläinen-Julkunen,K.,& Pietilä, A-M.
(2008)
Abstract
AIMS AND OBJECTIVES:
The aim of this study is to describe nurses' evaluations of factors that are hindering implementation of child-focused family nursing (CF-FN) into adult psychiatric practice. In addition, it explains the nurses' evaluations of the hindering factors related to the hospital organizational structure, the individual nurse, nursing and family.
BACKGROUND:
There is an increasing amount of families with dependent children in adult psychiatry. Although these families have long-term benefits from preventive family interventions, implementation of CF-FN is not routine mental health practice.
DESIGN AND METHODS:
Data were collected via a questionnaire-survey completed by Registered Psychiatric Nurses (n = 223) and practical Mental Health Nurses (n = 88) from 45 adult psychiatric units in five Finnish university hospitals. The response rate was 51%.
RESULTS:
Family-related factors, such as families' fears and lack of time, were considered as 'most hindering' to CF-FN. Nurses who used a family-centred approach and had further family education considered most of the factors as 'less hindering' in comparison to other nurses.
CONCLUSION:
To meet the needs of the families in mental health services, it is essential to develop nursing intervention methods such as CF-FN. There is a need for further education and use of family-centred care to develop this preventive approach.
RELEVANCE TO CLINICAL PRACTICE:
The results of this study could be considered when developing mental health services and family interventions for families with parental mental illness.
In pursuit of QALY weights for relatives: empirical estimates in relatives caring for older people
Davidson, T., Krevers, B. & Levin L. A.
(2008)
In Their Own Words: Improving Services and Hopefulness for Families Dealing with BPD
Buteau, E., Dawkins, K., & Hoffman, P. D.
(2008)
The impact of borderline personality disorder on family members of persons with BPD is articulated best by family members themselves. Despite an increase in research demonstrating more hopeful outcomes for the diagnosis, many mental health professionals remain unaware of recent advances in BPD treatments and therapies. This lack of awareness has dramatic consequences not only for patients, but for their families as well. This chapter describes the personal experiences of 12 family members with relatives with BPD. Expressed in one-hour semi-structured interviews, the family members' individual accounts centered on five key areas of their lives with their ill relative: (1) difficulty accessing current evidence-based knowledge about BPD and treatments; (2) a stigmatizing health care system; (3) prolonged hopelessness; (4) shrinking social networks; and (5) financial burdens. To improve the quality of services available to family members affected by BPD, social workers must educate themselves about the availability of professionals trained in BPD, BPD-specific treatment options, and BPD information resources. Adapted from the source document. COPIES ARE AVAILABLE FROM: HAWORTH DOCUMENT DELIVERY CENTER, The Haworth Press, Inc., 10 Alice Street, Binghamton, NY 13904-1580
Influencing support for caregivers
Raphael, C. & Cornwell, J. L.
(2008)
Informal and formal care among single-living elderly in Europe
Bolin, K., Lindberg, B., Lundborg, P.
(2008)
Information för närstående till personer med demenssjukdom
Andrén, S., Bonli, A
(2008)
Integration. En beskrivning av läget i Sverige. Rapport 1
Statistiska centralbyrån
(2008)
Integrationsarbete i civilsamhället: unga och äldre i blickfånget
Forssell, E. and M. Ingemarson
(2008)
Interaction, inclusion and students with profound and multiple disabilities: Towards an agenda for research and practice
Arthur-Kelly M, Foreman P, Bennett D, Pascoe S.
(2008)
The needs of students with profound and multiple disabilities (PMD) have received more attention in the educational research and best practice literature over the past decade, especially in relation to the importance of maximising their social and communicative engagement. However, perhaps as a function of their low incidence rate and resultant difficulties in obtaining research funding, there appears to be little in the way of a coherent vision for research in the international literature. In this paper we argue the need for a systematic programme of research into the nature of learning processes and outcomes for members of this group. Several issues emerge from a review of selected literature and from some recent observational data and descriptive case studies collected in special and inclusive classrooms. First, there is the importance of identifying ways of better understanding the complex experiences of members of this population, with particular attention to the ongoing contribution of behaviour state assessment as a means of measuring individual alertness and responsiveness. We argue that improved uptake of this approach will do much to advance our knowledge of life quality for this population and assist in more fully evaluating the effectiveness of educational interventions. Second, we explore the potential of social and communicative engagement in a variety of settings as a means of enhancing learning and participation in this group. We suggest that interpersonal variables are the key to improvements in educational support for this vulnerable group. Potential directions in research and practice are explored. © 2008 The Authors.
Interviews with children of persons with a severe mental illness: investigating their everyday situation
Östman, M.
(2008)
Research on children of persons with a severe mental illness focuses predominantly on parents' and others' perceptions. Children of mentally ill parents form a vulnerable group that has not been adequately paid attention to in psychiatric care institutions. Comparatively little is known about the children's recognition of their parents and the everyday situation of these families. The aim of the study was to investigate experiences of their life situation in children 10-18 years of age in a family with a parent with a severe mental illness. Eight children were interviewed concerning their everyday life situation. The interviews were analysed inspired from using thematic analysis. From the analysis of the material emerged aspects concerning the following themes: need for conversation, love for their family, maturity, experience of fear and blame, feelings of loneliness, responsibility and associated stigma. This study highlights the situation experienced by children of severely mentally ill persons who also are parents. The study may be found to be a basis for inspiring structured interventions and treatments programmes including children of the adult patients seeking psychiatric treatment.
Intimate Partner Violence and Preschoolers’ Explicit Memory Functioning
Jouriles, E. N., Brown, A., McDonald, R., Rosenfield, D., Leahy, M., & Silver, C.
(2008)
This research examines whether parents' intimate partner physical violence (IPV) relates to their preschoolers' explicit memory functioning, whether children's symptoms of hyperarousal mediate this relation, and whether mothers' positive parenting moderates this relation. Participants were 69 mothers and their 4- or 5-year-old child (34 girls). Mothers completed measures of IPV, children's hyperarousal symptoms, parent-child aggression, and positive parenting. Measures of explicit memory functioning were administered to preschoolers. As expected, IPV correlated negatively with preschoolers' performance on explicit memory tasks, even after controlling for parent-child aggression and demographic variables related to preschoolers' memory functioning. Preschoolers' hyperarousal symptoms did not mediate the relation between IPV and explicit memory functioning, but mothers' positive parenting moderated this relation. Specifically, the negative relation between IPV and preschoolers' performance on 2 of the 3 explicit memory tasks was weaker when mothers engaged in higher levels of positive parenting. These findings extend research on IPV and children's adjustment difficulties to explicit memory functioning in preschoolers and suggest that mothers can ameliorate the influence of IPV on preschoolers' memory functioning via their parenting.
Mål och policy vid palliativ vård och vård i livets slutskede för äldre och deras närstående i Tranemo : Ett gemensamt synsätt. (Vol. 1).
Brovall, C., Hanson, E., & Magnusson, L.
(2004)
Navigating the care system: A guide for providers to help family caregivers
Coleman, B.,
(2004)
Neuropsychological assessment (4th ed.).
Lezak, M. D.
(2004)
Known as "the bible" in its field, this classic text is an essential resource for students learning the field of clinical neuropsychology
This text provides timeless descriptions of all of the major syndromes, and updated information on assessment techniques and treatment
Suitable for use by professionals for clinical care and research, in educational settings for teaching and training, and by neuroscientists in many fields for reference information
Each of the authors has a unique clinical expertise, and all chapters are co-written
The book provides an up-to-date review of the current neuroscience research and clinical neuropsychology practice with many new references.
New to this Edition:
The new edition features structural and functional neuroimages in a color plate section
The new edition inludes newly developed testing batteries for specific issues such as frontal lobe and executive function evaluation
Nondirective counseling. Effects of short training and individual characteristics of clients [Akademisk avhandling].
Rautalinko E.
(2004)
Nondirective counseling is to listen, support, and advise, without directing a client's course of action. It has been influenced by humanistic theories in the tradition of Carl Rogers, but techniques used in nondirective counseling are common in many forms of psychological counseling and treatment today. There are, however, few conclusions as to what the results of training nondirective counseling are. The purpose of the present thesis is to examine effects of nondirective counseling training, and to analyze how such effects are moderated by the characteristics of clients. Three quasi-experimental or experimental studies (Paper IIII) are presented. In Paper I, trained and untrained insurance company employees were compared on their Reflective listening (RL; a subskill of nondirective counseling) skills before and after a training program. Training increased RL, and the skills were transferred to authentic settings. Trained employees were, however, not evaluated differently than untrained. In Paper II, psychology students were compared before and after RL training of three time lengths. All training times increased skills equally, but clients disclosed more information to those with longer training, the students remembered the information better, and external judges perceived the therapeutic relationship as better, especially if the judge was socially competent. In Paper III, two nondirective counseling techniques, RL and open-ended questions, were evaluated by judges who differed in social skills and cognitive ability. RL received positive ratings, whereas open-ended questions did not, and the judges' ratings were moderated by their social skills and cognitive ability. In the Discussion, it is proposed that even short training has effects, that trained skills generalize to authentic contexts, but that the usefulness of the examined subskills of nondirective counseling depends on client characteristics such as social skills and cognitive ability.
Nya verktyg för föräldrar – förslag till nya former av föräldrastöd. Rapport 2004:46
Bremberg, S. (Ed.).
(2004)
Nya verktyg för föräldrar – förslag till nya former av föräldrastöd. Rapport 2004:46.
Bremberg, S. (Red.).
(2004)
Nya verktyg för föräldrar. Slutrapport från uppdrag om föräldrastöd
Bremberg, Sven (redaktör)
(2004)
Utgångspunkten för denna rapport är ett uppdrag regeringen givit Statens
folkhälsoinstitut till att samla in, analysera och sprida kunskap om hur för-
äldrastöd av olika slag kan utformas för att göra verklig nytta.
Stöd till föräldrar kan både inriktas på föräldrarnas och på barnens
behov. Det som kommer föräldrarna till del gynnar ofta barnen, men detta
är inte givet. Mot denna bakgrund diskuteras i första hand insatser som är
inriktade på att tillgodose barns behov.
Närståendes behov : Omvårdnad som akademiskt ämne III
Östlinder, G.
(2004)
Och den ljusnande framtid är vår. – Några ungdomars bild av sin tid vid riksgymnasium
Lang, Lena
(2004)
Den tid vi i dagens samhälle betraktar som ungdomstid blir allt längre. De ungdomar som lämnar grundskolan tillhör en åldersgrupp som är större än på länge och det stora flertalet av dem är på väg in i svensk treårig gymnasieutbildning.
En övergripande specialpedagogisk idé handlar om att alla människor bereds möjlighet att ta del i ett samhälle. Samtidigt finns inte någon fullödig bild av vad en sådan idé innefattar, särskilt inte sett utifrån den enskilda människans synvinkel. Forskningsinsatser med specialpedagogisk relevans domineras av individuella perspektiv och perspektiv med intresse för samspel är begränsade. Vidare är intresset för gymnasieskolan som specialpedagogiskt forskningsområde begränsat. Befintlig kunskapsutveckling förankras i högre grad vid omvärldens syn på ungdomar, än i ungdomars syn på omvärlden.
Denna undersökning utgår från några av dem som ofta outsagt åsyftas då "en skola för alla" diskuteras. Undersökningen baseras odelat på ungdomars bild, med en särskild tonvikt lagd vid deras upplevelse av omgivningen inklusive skolan och på samspelet med och inom den.
Parent-child interaction: A comparison of parents' perceptions in three groups
Wilder J, Axelsson C, Granlund M.
(2004)
Purpose: To evaluate a children's version of the ICF that takes children's dependency on their parents and a developmental perspective into consideration. Method: This study explored how 91 parents perceived child participation in terms of parent/child immediate interaction, and desires for ideal interaction in relation to body impairments and activity limitations. Similarities and differences were investigated in three matched groups of families through questionnaires. Group 1 consisted of parents of children with profound multiple disabilities, Group 2 was developmentally matched and Group 3 was matched according to chronological age. Results: The children with profound multiple disabilities expressed the same amount of emotions as the other groups, but they had difficulties expressing more complex emotions. Parents perceived the children's behaviour styles in a similar way in the three groups. There were significant differences in how the immediate interaction was perceived with parents to children of Group 1 perceiving difficulties in maintaining joint attention and directing attention. Conclusions: The results suggest that parental perceptions of the interaction with their children with profound multiple disabilities in the immediate setting to a certain extent are related to the body impairments of the children but not strongly to communicative skills /activity limitations. Thus, to focus communication intervention on participation and interaction, assessment and questions to parents have to be focused directly on these issues. © 2004 Taylor & Francis Ltd.
Parenting is a mental health issue
Fudge, E., Falkov, A., Kowalenko,N., & Robinson,P.
(2004)
Objective: Increasing numbers of adults with a psychiatric disorder are also parents of dependent children. The present article aims to outline ways in which Fellows of the Royal Australian and New Zealand College of Psychiatrists (RANZCP) can assist in enhancing psychiatric care when a person with a mental illness also has parenting responsibilities.
Methods: The national Children of Parents With A Mental Illness (COPMI) initiative undertook consultations with consumers, carers, young people and a range of professionals to assist in development of documents and resource materials to enhance policy and practice. Communication and interaction with key psychiatrists' professional bodies to seek their advice and participation has been maintained throughout the project.
Results: The RANZCP Fellows have assisted the COPMI project in the development and dissemination of draft principles and recommended actions for services and people working with children of parents with a mental illness and their families, and in the development of associated resource materials. They are now considering a College position statement on this issue.
Conclusions: If children of parents with a mental illness are to benefit from proposed enhancements to practice relating to services provided to their families, it is essential that psychiatrists themselves are involved in the development, implementation and review of good practice in this area.
Parents of Children with Intellectual Disabilities
Olsson, Britt Marie
(2004)
Participation of disabled children in individual decisions about their lives and in public decisions about service development
Cavet J, Sloper P.
(2004)
A literature review was carried out to establish what evidence exists about disabled children's participation in decision-making, both regarding their own lives and about the shape of service delivery. There is evidence that disabled children hold and can express views, given the right environment. However, participation of disabled children needs further development. Measures proposed include addressing organisational systems so that they promote participation, extending advocacy services, the adoption of inclusive approaches and staff training, plus education and information for disabled children and their parents. There remain significant gaps in the research evidence available.
Patterns amongst behavior states, sociocommunicative, and activity variables in educational programs for students with profound and multiple disabilities
Arthur, M.
(2004)
Recent investigations into the behavior states of students with profound and multiple disabilities have underlined the importance of better understanding the part that educational variables play in relation to levels of individual alertness and involvement. In the study reported here, 10 students in this population were observed for a full day each and detailed, noncontinuous information was collected on several contextual factors and student behavior states, using an interval recording technique. This paper examines transitional probabilities for observed student behavior states over time and also explores potential relationships between states, communicative conditions and activities taking place in educational settings. These sequential estimates provide evidence of state stability and positive relationships amongst student engagement and active communicative and social learning environments. Implications for practice and further research are discussed.
Perceptions, needs and mourning reactions of bereaved relatives confronted with a sudden unexpected death
Merlevede, E., Spooren, D., Henderick, H., Portzky, G., Buylaert, W., Jannes, C., Calle, P., Van Staey, M., De Rock, C., Smeesters, L., Michem, N., & van Heeringen, K.
(2004)
Abstract
Many individuals die suddenly and unexpectedly outside the hospital or in the emergency department (ED). The aim of this study was to determine the perceptions, needs and mourning reactions of their bereaved relatives and to assess the relationship with the cause of death. Data were collected prospectively in the emergency department of a university hospital by means of an interview and a standardised questionnaire. We registered 339 deaths over a period of 10 months, of which 110 met the inclusion criteria for sudden and unexpected death. The study group included 74 relatives of 53 deceased individuals. The majority of relatives were confronted with a traumatic death outside the hospital. Most frequently reported complaints concerned a lack of information and being left with unanswered questions. Psychological problems related to mourning were mainly associated with a traumatic cause of death. The results of this study highlight the specific needs of relatives in case of a sudden death either outside the hospital or in the ED and may serve as a basis for recommendations for improvement of psychological care of individuals who are suddenly bereaved.
Personlig assistent – kompis, startmotor eller någons armar och ben?
Larsson, Monica
(2004)
Producing computer-generated tailored written information for stroke patients and their carers: system development and preliminary evaluation
Hoffmann T, Russell T, McKenna K.
(2004)
Purpose: The aim of this project was to design and evaluate a system that would produce tailored information for stroke patients and their carers, customised according to their informational needs, and facilitate communication between the patient and health professional.
Method: A human factors development approach was used to develop a computer system, which dynamically compiles stroke education booklets for patients and carers. Patients and carers are able to select the topics about which they wish to receive information, the amount of information they want, and the font size of the printed booklet. The system is designed so that the health professional interacts with it, thereby providing opportunities for communication between the health professional and patient/carer at a number of points in time.
Results: Preliminary evaluation of the system by health professionals, patients and carers was positive. A randomised controlled trial that examines the effect of the system on patient and carer outcomes is underway.
Professionella möten. Om utredande, stödjande och psykoterapeutiska samtal
Gordan, K.
(2004)
Qualitative Evaluation of a School-Based Support Group for Adolescents With an Addicted Parent
Gance-Cleveland B.
(2004)
BACKGROUND:
Adolescents with an addicted parent are at risk for physical, emotional, and social problems. They are particularly at risk for developing substance abuse. School-based support groups have been suggested as a beneficial treatment and prevention strategy.
OBJECTIVE:
To examine the features, critical attributes, processes, and benefits of school-based support groups for adolescents with an addicted parent.
METHODS:
A qualitative evaluation using the ethnographic method was conducted at two Midwestern suburban high schools.
RESULTS:
The study resulted in a comprehensive description of school-based support groups and an outline presenting benefits of participation for adolescents with an addicted parent. The benefits of group participation included increased knowledge, enhanced coping, increased resilience, improved relationships, and improved school performance.
DISCUSSION:
Findings from this study suggest that school-based support groups are beneficial to adolescents with addicted parents. Experiential knowledge is the foundation of these self-help groups. School-based support group participation enhanced self-knowledge and led to self-care and self-healing. The school-based support groups expanded the adolescents' awareness, resulting in their ability to make critical choices that facilitated changes in the dysfunctional pattern. Support group participation empowered youth to make these changes.
Qualitative studies of stroke: a systematic review
McKevitt C, Redfern J, Mold F, Wolfe C.
(2004)
Background and Purpose— Qualitative studies are increasingly used to investigate social processes and phenomena influencing health behaviors and service provision. We aimed to identify the scope of published qualitative studies of stroke, consider their relevance to development and delivery of services for people with stroke, and make recommendations for future work.
Methods— Literature review of published articles was identified by systematically searching online literature databases using keywords from the start of each database until 2002. Articles were reviewed by 2 authors, using a standardized matrix for data extraction. The 2003 European Stroke Initiative recommendations for stroke management were used to categorize the literature for consideration of its contribution to stroke research.
Results— We included 95 articles. Their empirical contribution includes an emphasis on recording the "human" experience of stroke; identification of needs as perceived by patients and their families, differences in priorities between patients and professionals, and barriers to best-quality care. We identified 12 papers that were specifically undertaken to develop or evaluate interventions.
Conclusions— Qualitative studies have addressed a wide range of issues related to the impact of stroke on individuals and caregivers, and to the organization and delivery of services. Significant problems remain in ensuring the delivery of best-quality stroke care, which such studies have the potential to address. Maximizing this potential requires greater collaboration between nonclinical and clinical scientists, service providers, and users to formulate research questions of interest as well as new research strategies, such as meta-analysis, to pool qualitative research findings and multisited investigations.
Quality of life among older people in Sweden receiving help from informal and/or formal helpers at home or in special accommodation
Hellström, Y., Andersson, M., & Hallberg, I. R.
(2004)
Recognition and justice: outline of a plural theory of justice
Honneth, Axel
(2004)
In this article, Axel Honneth outlines a plural theory of justice. In developing his argument he takes his departure not in the classic elimination of 'inequality', but in the avoidance of 'humiliation' or 'disrespect'. He is convinced that an appropriate point of departure for a recognition-theoretical conception of justice must show that the experience of social injustice is always measured in terms of the withholding of some recognition held to be legitimate. Throughout the article, Honneth makes strong reservations about Nancy Fraser's approach, where 'recognition' and 'redistribution' are separated into two conceptual totalities with the single goal of 'participatory equality'. On the contrary, he suggests having a more elaborate concept of identity formation, so that participating in the public realm means participating without shame, capable of unfurling his or her own personality's potential in an unforced manner and of thus developing a personal identity. From this standpoint Honneth points to three differentiated spheres of recognition that must be obtained if the individual is to obtain a personal identity, namely love, equal treatment in law and social esteem
Research directions in augmentative and alternative communication for preschool children
Sevcik, R. A., Romski, M. A., & Adamson, L. B.
(2004)
Abstract
PURPOSE:
To review issues related to the use of augmentative systems with young children and present a case study of one child and family's experience with the System for Augmenting Language (SAL).
METHOD:
The case involved a preschool child with severe developmental delays who had little functional speech. Acquisition and use of graphic symbols on a speech-output communication device was studied in home and clinical settings. Language and communication behaviours of the child and his communication partners were observed and language assessment measures were collected.
RESULTS:
Child engagement state varied across the two settings with a stable profile seen in the therapy setting and a clear increase at home. Child communicative attempts increased following the introduction of the augmented system. Parents reported successful use of the SAL.
CONCLUSION:
SAL is a viable communication intervention approach for young children.
Resilience in parentally bereaved children and adolescents seeking preventive services
Lin, K., Kirk, K., Sandler, I.N., Ayers, T.S., Wolchik, S.A., & Luecken, L.J.
(2004)
Abstract
This study examined environmental stress, family, and child variables that differentiate resilient children and adolescents from those with mental health problems following the death of a primary caregiver. The community-based sample included 179 bereaved children ages 8 to 16 years and their surviving caregivers who completed a test battery of measures before participating in a prevention program. Forty-four percent of bereaved children were classified as resilient and 56% as affected based on the absence of clinically significant mental health problems on at least 1 measure as reported by either the child, surviving caregiver, or teacher on standardized measures of mental health problems. Results of multivariate analyses indicated that bereaved resilient versus affected status was a function of both family and child variables. Higher levels of caregiver warmth and discipline and lower levels of caregiver mental health problems were family-level variables that significantly differentiated resilient children from affected children. Bereaved children's perceptions of less threat in response to negative events and greater personal efficacy in coping with stress were child-level variables that differentiated resilient from affected status. Family and child variables were entered into a discriminant function analysis that correctly classified 72% of the sample. The findings are consistent with a model of resilience in which multilevel variables account for children's positive adaptation following exposure to adversity.
Respekt för varandras verksamhet
Antonson, S.
(2004)
Ro utan åror. En bok om livet och döden
Lindguist, Ulla-Karin
(2004)
Samma dag som hon skulle fira sin 50-årsdag fick TV-journalisten Ulla-Carin Lindquist sin diagnos. De problem hon haft med först sin högra hand, sen sitt ben och sen med allt fler muskler berodde på att hon drabbats av amyotrofisk lateralskleros, ALS. Det är den värsta av alla neurologiska sjukdomar. Den saknar bot och leder snabbt till döden. Den här boken är skriven under den korta sjukdomstiden.
Ulla-Carin Lindquist skildrar sina upplevelser ställd ansikte mot ansikte med döden. Men det är också en bok om kärlek och en djup förbundenhet med allt levande.
Samspel och konfrontation
Bergh, A.
(2004)
Samtalskonst. Palliativ medicin.
Birgegård, G.
(2004)
Screening for DSM-IV externalizing disorders with the Child Behavior Checklist: A receiver-operating characteristic analysis
Hudziak JJ, Copeland W, Stanger C, Wadsworth M.
(2004)
Background: This study examines the diagnostic accuracy of the CBCL syndrome AS scales for predicting DSM-IV Attention Deficit-Hyperactivity Disorder (ADHD) and Oppositional Defiant Disorder with or without Conduct Disorder (ODD/CD).
Methods: The sample included 370 children (187 probands and 183 siblings) participating in a family genetic study of attention and aggressive behavior problems. Univariate and stepwise logistic regression analyses were used to derive models for predicting two diagnostic conditions: ADHD and ODD/CD.
Results: The Attention Problems syndrome significantly predicted ADHD, and ODD/CD was significantly predicted by the Aggressive Behavior syndrome. Both scales demonstrated good diagnostic accuracy, as assessed through receiver operating characteristics analyses. Cut-point analyses confirmed the utility of low T-scores, 55 on the respective syndromes, for efficiently discriminating cases from noncases.
Conclusions: CBCL syndromes display good diagnostic efficiency for assessing common externalizing disorders in children.
Screening for DSM-IV externalizing disorders with the Child Behavior Checklist: A receiver-operating characteristic analysis
Hudziak JJ, Copeland W, Stanger C, Wadsworth M.
(2004)
BACKGROUND:
This study examines the diagnostic accuracy of the CBCL syndrome AS scales for predicting DSM-IV Attention Deficit-Hyperactivity Disorder (ADHD) and Oppositional Defiant Disorder with or without Conduct Disorder (ODD/CD).
METHODS:
The sample included 370 children (187 probands and 183 siblings) participating in a family genetic study of attention and aggressive behavior problems. Univariate and stepwise logistic regression analyses were used to derive models for predicting two diagnostic conditions: ADHD and ODD/CD.
RESULTS:
The Attention Problems syndrome significantly predicted ADHD, and ODD/CD was significantly predicted by the Aggressive Behavior syndrome. Both scales demonstrated good diagnostic accuracy, as assessed through receiver operating characteristics analyses. Cut-point analyses confirmed the utility of low T-scores, 55 on the respective syndromes, for efficiently discriminating cases from noncases.
CONCLUSIONS:
CBCL syndromes display good diagnostic efficiency for assessing common externalizing disorders in children.
Se mig! Hör mig! Förstå mig
Gunnel Winlund, Susanne Rosenström Bennhagen
(2004)
Kunskapen och engagemanget hos omgivningen är livsviktiga för personer med grav utvecklingsstörning. De är helt beroende av andra. Fram tills nu har det saknats ett grundläggande, samlat kunskaps- och
arbetsmaterial om vuxna personer med grav utvecklingsstörning. Boken bygger på kunskaper som utvecklats inom olika forsknings-och utvecklingsprojekt. Teori omvandlas till praktik genom talrika
vardagsexempel. Några områden som boken tar upp: Helhetssyn, normalisering, miljöns betydelse, problembeteende, begåvning, kommunikation, självständighet och lärande.
Se mig! Hör mig! Förstå mig!
Gunnel Winlund
(2004)
För personer med grav utvecklingsstörning är kunskapen och engagemanget hos omgivningen livsviktig. De är beroende av att andra ser dem, hör dem och förstår dem. Filmen bygger på kunskap från olika forsknings- och utvecklingsprojekt och den visar teori omvandlat till praktik i många vardagsexempel.
Till denna film finns även en bok med samma namn.
Services for supporting family carers of elderly people in Europe : Characteristics, coverage and usage : Eurofamcare : National background report for Sweden.
Johansson, L.
(2004)
Six-year intervention outcomes for adolescent children of parents with the human immunodeficiency virus
Rotheram-Borus MJ, Let M, Lin YY, Lester P.
(2004)
HYPOTHESIS: Having a parent with the human immunodeficiency virus has a significant negative impact on an adolescent child's adjustment.
OBJECTIVE: To assess the adjustment of adolescent children to having a parent with the human immunodeficiency virus over 6 years, following the delivery of a coping skills intervention. DESIGN: A randomized controlled trial with repeated evaluations that was analyzed with an intention-to-treat analysis. A skill-based intervention was delivered in 3 modules over 24 sessions, with the third module being delivered only if parents died. SETTING AND PATIENTS: A representative sample of parents with the human immunodeficiency virus (n = 307) and their adolescent children (n = 423) was recruited from the Division of AIDS Services in New York City; 51.5% (n = 158) of the parents died. MAIN OUTCOME MEASURES: Employment and school enrollment, receiving public welfare support, early parenthood, mental health symptoms, and the quality of romantic relationships. RESULTS: Over 6 years, significantly more adolescents in the intervention condition than the control condition were employed or in school (82.58% vs 68.94%), were less likely to receive public welfare payments (25.66% vs 36.65%), were less likely to have psychosomatic symptoms (mean, 0.24 vs 0.31), were more likely to report better problem-solving and conflict resolution skills in their romantic relationships (mean score, 4.38 vs 4.20), expected to have a partner with a good job (mean, 4.57 vs 4.19), and expected to be married when parenting (mean, 3.05 vs 2.40). With marginal significance, the percentage of parents in the intervention condition (34.6%) was less than in the control condition (44.1%).
CONCLUSION: Physicians must consider the psychosocial consequences of illness-related challenges on children and provide interventions.
Självskadebeteende hos unga kvinnor : litteraturredovisning av nyare artiklar rörande självskadebeteende, dess bakgrund och behandling
Samuelsson, M.
(2004)
Skyddandets förnuft : En studie om anhöriga till hjälpbehövande äldre som invandrat sent i livet (Rapport i socialt arbete, 0281-6288 ; 109).
Forssell, E.
(2004)
Skyddandets förnuft : en studie om anhöriga till hjälpbehövande äldre som invandrat sent i livet.
Forssell, E.
(2004)
Släktingar pressas att vårda åldringar hemma : "Sängplatser kan frigöras med anhörigas hjälp"
Gisby, C.
(2004)
Släktingar pressas att vårda åldringar hemma : "Sängplatser kan frigöras med anhörigas hjälp".
Gisby, C.
(2004)
Social networks, ethnicity and public home care utilisation
Litwin, H.
(2004)
This article examines the relationships between support networks, ethnicity and the utilisation of formal care services, taking into account background characteristics and functional health status among 3,403 older people in Israel. Data were drawn from a national survey in 1997 of people aged 60 or more years. The outcome variable was the use of publicly-financed personal care or homemaking services. About 15 per cent of the study population made use of such home care. Six informal support network constellations were identified by applying cluster analysis to key criterion variables that reflect the inter-personal milieu. The resultant network types were: community-clan, family-focused, diverse, friend-focused, neighbour-focused, and restricted networks. Binary logistic regression revealed that the use of formal home-care services was significantly associated with a respondent's age, gender, functional level and informal support network type (Nagelkerke R2=0.39). No association was found between home-care utilisation and a respondent's ethnicity (Arab, Jew, and new Russian immigrant), income or education. The results show that publicly-financed formal care services were utilised more frequently by older-old persons, women, functionally impaired individuals and people embedded in the neighbour-focused and restricted networks (and to a lesser degree, in the diverse and friend-focused networks). Neighbour-focused and restricted network types were characterised by fewer informal support resources at their disposal than the other types. Thus, formal home care was sought more often in cases in which the informal sources of support had less capacity to provide ongoing informal care.
Storasyster, lillebror och andra platser i syskonskaran
Martensen-Larsen, Oluf & Sørrig, Kirsten
(2004)
Varför blir man den man blir? Vår plats i syskonskaran har stor betydelse för hur vi kommer att bli, vem vi förälskar oss i, med vem vi kommer att leva lyckligt eller olyckligt vilken utbildning och vilket arbete vi får och hur vår levnadsbana formas. Tidigare har boken utgivits med titeln Familjemönster och personlighet och sålt i över tjugotusen exemplar.
De intressanta teorier som läggs fram här bygger på Oluf Martensen-Larsens kartläggning av femtontusen svenskars och danskars släktförhållanden. Vi kommer hela livet att alltid vara starkt präglade av vår familjebakgrund, om vi har enbart bröder eller en bara systrar, om vi är äldst, yngst eller kommer i mitten, om vi är inklämda och har fått alltför liten tid och plats eller om vi är födda med flera års avstånd till yngre och äldre syskon.
Oluf Martensen-Larsens forskning visar också hur våra liv påverkas av våra förfäders plats i syskonskaran. Med hjälp av speciella släktscheman kan man kartlägga sitt familjemönster och på så vis få en djupare och mer nyanserad förståelse för varför man blir den man blir.
Stress, Anxiety and Depression Among Parents of Children With Autism Spectrum Disorder.
Bitsika V, Sharpley CF.
(2004)
In a replication of a previous study of the incidence and contributing factors in anxiety, depression and stress in Victorian parents of a child with autism spectrum disorder (ASD), a sample of 107 Gold Coast parents completed a questionnaire that assessed their demographic backgrounds, anxiety and depression scores on standardised inventories, and also tapped several aspects of those factors that may have contributed to their wellbeing. Over 90% of parents reported that they were sometimes unable to deal effectively with their child's behaviour. Nearly half of the participants were severely anxious and nearly two thirds were clinically depressed. Factors that emerged as significant in differentiating between parents with high versus low levels of anxiety and depression included access to family support, parents' estimation of family caregivers' expertise in dealing with the behavioural difficulties of a child with ASD, and parental health. Parents' suggestions for personal support services are reported, and some comparisons across the data from the two states are made, with suggestions for further research into parent support mechanisms.
Sustained Benefit of Supportive Intervention for Depressive Symptoms in Caregivers of Patients With Alzheimer´s Disease
Mittelman MS, Roth DL, Coon DW, Haley WE.
(2004)
Is there intergenerational transmission of trauma? The case of combat veterans' children
Dekel, R., & Goldblatt, H
(2008)
This article is a review of the literature on intergenerational transmission of posttraumatic stress disorder (PTSD) from fathers to sons in families of war veterans. The review addresses several questions: (1) Which fathers have a greater tendency to transmit their distress to their offspring? (2) What is transmitted from father to child? (3) How is the distress transmitted and through which mechanisms? And finally, (4) Which children are more vulnerable to the transmission of PTSD distress in the family? Whereas the existing literature deals mainly with fathers' PTSD as a risk for increased emotional and behavior problems among the children, this review also highlights the current paucity of knowledge regarding family members and extrafamilial systems that may contribute to intergenerational transmission of PTSD or to its moderation. Little is also known about resilience and strengths that may mitigate or prevent the risk of intergenerational transmission of trauma.
Knowledge and information needs of informal caregivers in palliative care: a qualitative systematic review.
Docherty, A., Owens, A., Asadi-Lari, M., Petchey , R., Williams, J. & Carter , Y. H.
(2008)
Kommunernas anhörigstöd : Utvecklingsläget 2007
Socialstyrelsen
(2008)
Kommunernas anhörigstöd. Utvecklingsläget 2007
Socialstyrelsen
(2008)
Kommunikativ omvårdnad
Boel Heister Trygg
(2008)
Om alternativ och kompletterande kommunikation för personer med demens, förvärvad hjärnskada och grav utvecklingsstörning
Kontaktmannaskap inom äldreomsorgen
Birge Rönnerfält, M., Norman, E., Wennberg, K.
(2008)
Korttidsboende : En kort tids boende?
Nordén, I., Svensson, M., & Veibäck, M.
(2008)
Lessons from My Father: My Mother's End-of-Life Caregiver
Wilson, S.
(2008)
Like a shadow -- on becoming a stroke victim's relative
Wallengren, C., Friberg, F. & Segesten, K.
(2008)
Linking theory and intervention to promote resilience in parentally bereaved children.
Sandler, I.N., Wolchik, S.A., Ayers, T.S., Tein, J., Coxe, S. & Chow, W.
(2008)
In this chapter, we describe the development and evaluation of the Family Bereavement Program (FBP), a theoretically derived intervention program for children who have experienced parental death. We first present a discussion of risk and protective factors for parentally bereaved children and discuss these within a general theoretical framework of resilience following adversity. We then discuss the modifiable risk and protective factors that were targeted for change in the FBP and the theoretical model underlying the program. Finally, we present evidence from the evaluation of the FBP, including assessment of mediators and moderators of program effects at posttest and short-term follow-up and findings from preliminary analyses at the 6-year follow-up. This research on a theoretically based intervention for bereaved children follows a similar program of research we have conducted with children from divorced families, and we discuss ways in which the findings with bereaved children replicate, and in some cases diverge from, findings regarding children in divorced families.
Living at the edge of one´s capability: Experiences of parents of teenage daughters diagnosed with ADHD.
Hallberg U, Klingberg G, Reichenberg K, Möller A.
(2008)
Living with children with a disability is often perceived as a permanent stressor to the family and it affects all aspects of family life including the well-being of family members. Since little is known about parenting teenage daughters diagnosed with ADHD, the aim of the study was to gain a deeper understanding of the main problem involved using a grounded theory approach. Interviews were carried out with 12 parents, 11 mothers and 1 father, of teenage daughters diagnosed with ADHD. The parents´situation was conceptualized as living at the edge of one´s capability with the properties having the sole parental responsibility, fighting for professional support, being on duty around the clock and trying to solve family conflicts. Parents described how their health was negatively affected by their life situation.
Living at the edge of one's capability: Experiences of parents of teenage daughters diagnosed with ADHD
Klingberg G, Hallberg U, Reichenberg K, Möller A.
(2008)
Living with children with a disability is often perceived as a permanent stressor to the family and it affects all aspects of family life including the well-being of family members. Since little is known about parenting teenage daughters diagnosed with ADHD, the aim of the study was to gain a deeper understanding of the main problem involved using a grounded theory approach. Interviews were carried out with 12 parents, 11 mothers and 1 father, of teenage daughters diagnosed with ADHD. The parents´situation was conceptualized as living at the edge of one´s capability with the properties having the sole parental responsibility, fighting for professional support, being on duty around the clock and trying to solve family conflicts. Parents described how their health was negatively affected by their life situation.
Living with childhood cancer. Family members’ experiences and needs
Björk, M.
(2008)
Akademisk avhandling
The overall aim of this thesis was to elucidate family members' lived experiences and needs during a child's cancer trajectory and to describe how the illness and its treatment influence both individuals within the family and the family as a whole. Seventeen families with a child under the age of 13 and newly diagnosed with cancer were followed during the child's treatment trajectory by means of interviews and observations. Parents, patients and siblings seven years or older were interviewed at the time of diagnosis, during the treatment and after it was completed. Patients younger than seven were observed during their initial hospitalization. The interviews were analyzed with a hermeneutic phenomenological approach and the observations with content analysis. The results from the observations (Paper II) showed that the young children's needs during their initial hospitalization were described as a need to have the parent close by, a need to play and feel joy, a need for participation in care and treatment, a need for a good relationship with the staff and a need for physical and emotional satisfaction. The results from the interviews showed that, at time of diagnosis (Paper I) the families' lived experience was described as a broken life world and an immediate striving to survive. Their secure everyday life disappeared and was replaced by fear, chaos and loneliness. When striving to help the child and the family survive, family members endeavoured to feel hope and have a positive focus, to gain control and to feel close to other people. During treatment (Paper III) the families lived experience was described as focus on the ill child - an everyday struggle. Each day's focus was on the child and the families experienced it as a tough period which they struggled to come through. Only when the sick child's needs were satisfied, could the focus move to other parts of the family. Family members felt drained, locked up and isolated. Family life was experienced as disrupted and they struggled to retain normality and become experts. Perspectives on life changed; it was important to enjoy life and to be aware of sources of support. When treatment was completed (Paper IV) the families' lived experience was described as returning to a changed ordinary life - incorporating a trying and contradictory experience. The families felt relieved that the child's treatment was over but, at the same time they still experienced stresses and strains in life. Family members felt changed and especially the parents needed to focus on themselves in order to recover. The families wanted closeness but, from time to time, felt a loss of concern from others. The findings from this thesis can deepen the understanding of what it is like living with childhood cancer and of the needs of young children with cancer. By reflecting on the findings, paediatric oncology staff may become increasingly thoughtful and thereby better prepared to take care of family members of a child with cancer, including the sick children themselves.
Making Sense of Sibling Responsibility for Family Caregiving
Willyard, J., Miller, K., Shoemaker, M. & Addison, P.
(2008)
Mapping images to objects by young adults with cognitive disabilities.
Carmien, S. & Wohldman E.
(2008)
How the type of representation (icons, photos of objects in context, photos of objects in isolation) displayed on a hand-held computer affected recognition performance in young adults with cognitive disabilities was examined. Participants were required to match an object displayed on the computer to one of three pictures projected onto a screen. We tested the opinion widely held by occupational therapists and special education professionals that there is an inverse relationship between cognitive ability and the required fidelity of a representation for a successful match between a representation and an external object. Despite their widespread use in most learning tools developed for persons with cognitive disabilities, our results suggest that icons are poor substitutes for realistic representations.
Mental health and creating safety: the participation of relatives in psychiatric treatment and its significance
Piippo, J. and J. Aaltonen
(2008)
Aims and objectives. We aimed to discover the significance of the participation of relatives in the treatment process using the principles of the Need-Adapted Approach. The study is based on joint interviews with 10 psychiatric patients, their relatives and a multiprofessional treatment team. Background. The Need-Adapted Approach was developed in Finland for difficult psychiatric problems in public sector psychiatry. The central feature of the approach is the active participation of patients and their relatives in planning the treatment and in the treatment process. It emphasises horizontal expertise and open discussions between the patient, relatives and professionals. Design. A qualitative method based on the grounded theory approach was used. Method. The main focus in the analysis was on how the informants experienced the significance of the participation of their relatives in the treatment process. Results. Seven categories and one core category were identified. Primary categories which increased safety were: (1) shared understanding, (2) a new kind of relationship opens up and (3) being able to cope with life. Secondary categories were: (4) exclusion and (5) need for a one-to-one relationship. Ambivalent categories were: (6) whom or what one can believe and (7) keeping the illness secret. One core category, safety, was identified among the categories. A theoretical model was created for clinical purposes. Conclusions. When practiced correctly, the Need-Adapted Approach makes it possible to create circumstances in psychiatric treatment where the patient and his/her relatives can experience increased safety in spite of the anxiety connected to the psychiatric difficulties. Relevance to clinical practice. Clinical workers and nursing personnel can use our findings in their practical work with psychiatric patients and their relatives. Our findings support further theoretical considerations concerning safety and can be used as guidelines for nursing personnel in their work
Older male carers and the positive aspects of care
Ribeiro, O. & Paul, C.
(2008)
Older people - recipients but also providers of informal care: an analysis among community samples in the Republic of Ireland and Northern Ireland
McGee, H.
(2008)
Data on both the provision and receipt of informal care among populations of older adults are limited. Patterns of both informal care provided and received by older adults in the Republic of Ireland (RoI) and Northern Ireland (NI) were evaluated. A cross-sectional community-based population survey was conducted. Randomly selected older people (aged 65+, n = 2033, mean age (standard deviation): 74.1 years (6.8), 43% men, 68% response rate) provided information on the provision and receipt of care, its location, and the person(s) who provided the care. Twelve per cent of the sample (251/2033) identified themselves as informal caregivers (8% RoI and 17% NI). Caregivers were more likely to be women, married, have less education and have less functional impairment. Forty-nine per cent (1033/2033, 49% RoI and 48% NI) reported receiving some form of care in the past year. Care recipients were more likely to be older, married, have more functional impairment, and poorer self-rated health. Receiving regular informal care (help at least once a week) from a non-resident relative was the most common form of help received [28% overall (578/2033); 27% RoI and 30% NI]. Five per cent (n = 102/2033) of the sample reported both providing and receiving informal care. Levels of informal care provided by community-dwelling older adults were notably higher than reported in single-item national census questions. The balance of formal and informal health and social care will become increasingly important as populations age. It is essential, therefore, to evaluate factors facilitating or impeding informal care delivery.
Om brukardelaktighet i välfärdssystemen : en kunskapsöversikt
Hultqvist, S.
(2008)
Omsorg som arbete : om utbildning, arbetsmiljö och relationer i äldre- och handikappomsorgen
Ahnlund, P
(2008)
Background: At the central administrative level in Sweden, care work is presented as a complex task for which personnel require special qualifications. In elderly care, questions of training and qualifications form the highly topical theme noticed by central actors. According to The National Board of Health and Welfare, the supply of manpower and the educational levels of the workers are the most important factors in ensuring high quality care for the elderly. The question of educational levels is, however, with the exception of personal assistants, not given as much attention in care for people with disabilities.Aim: The aim of this dissertation is firstly to compare elderly care and care for persons with disabilities with the focus to describe and analyse education and work environment in these sectors. Secondly, the aim is to analyse if, and if so how, questions of education interacts with personnel's view of the social work environment.Methods: The thesis is comprised of four studies and paper 1, 2 and 3 are based on the results of a qualitative interview study, which was comprised of 48 persons who worked in elderly care and the care for persons with disabilities. Of the 48 persons who took part in the study, 11 of them worked as middle managers and 37 worked as care workers in the every day care. Paper 4 consists of a research summary on how education for care workers is being studied in a Swedish and an international context.The personnel who participated in the interview study work in different care settings; in elderly care the personnel work in both sheltered housing and public home care services. In the care for disabled persons, the personnel work in residential housing with special services, in public daily activities for people with intellectual disabilities and as personal assistants.Result: Both managers and personnel find it important for care workers to have a degree of educational background as a basis for the learning process at the work place. The results also show that educational levels and the work environment are themes that are discussed differently by different actors. In previous research on education for care workers in both elderly care and the care for People with disabilities, academic education or education at a ground level has been seen as problematic due to the distance it is said to create between the worker and the care recipient. My results show that the discussion about education for care workers has become rather biased, and that highly educated personnel tend to be more aware of the power they possesses and that the relation to the care receiver is important. In elderly care the issue of education seems to be more a question of a general educational level. In the care for people with disabilities, the question of education for personnel is on a more individual basis, where the care workers learn together with the care recipient. Educational levels, the work environment and relations with colleagues and care recipients are connected and support from the managers is important for understanding the work and the relational perspective.
Organizational effects of information and communication technology (ICT) in elderly homecare: a case study
Vimarlund, V., Olve, N. G., Scandurra, I. & Koch, S.
(2008)
Outcomes for users and carers in the context of health and social care partnership working - from research to practice
Miller, E., Whoriskey, M. & Cook, A.
(2008)
Patientkommunikation i praktiken – information dialog och delaktighet
Larsson, Inger, Rahle Hasselbalch, Lena, Palm, Lars
(2008)
Boken visar vägen till funktionell kommunikation i mötet mellan vårdgivare och patient, det vill säga informationsöverföring och dialog som möjliggör patientens delaktighet i behandling och rehabilitering. Huvuddelen av boken är praktiskt inriktad och tänkt både som en lärobok för sjuksköterske-, sjukgymnast-, dietist- och arbetsterapeutprogrammet och som en praktisk handbok för yrkesverksamma.
Denna titel har tidigare givits ut av Norstedts men ingår numera i Studentlitteraturs sortiment.
Patients’ and next-of-kins’ attitudes towards compulsory psychiatric care
Wallsten, Tuula, Östman, Margareta, Sjöberg, Rickard L. &Kjellin, Lars
(2008)
The introduction of a new Civil Commitment Act in Sweden in 1992 involved a shift of emphasis from medical to judicial authority. Little is known about general patient attitudes to compulsory care. The aim of the study was to study possible differences in attitudes, before and after the mental health law reform, among involuntarily and voluntarily admitted patients and their next-of-kins towards involuntary psychiatric admission. Samples of 84 committed and 84 voluntarily admitted patients in 1991 and 118 committed and 117 voluntarily admitted patients in 1997–99 were interviewed within 5 days from admission and at discharge, or after 3 weeks of care. Samples of 64 next-of-kins to the committed patients and 69 next-of-kins to the voluntarily admitted patients in 1991, and 73 and 89 next-of-kins, respectively, in 1997–99 were interviewed approximately 1 month after the admission. Few changes in attitudes were found between the two study occasions. A majority of all patients stated that it should be possible to compulsorily admit patients, and a great majority of the patients and the next-of kins stated that decisions regarding compulsory admission should be taken by doctors. Most patients and next-of-kins regarded decisions about involuntary psychiatric care mainly as a medical matter. Strong support for coercion in order to protect the patient and others was found among next-of-kins. The law reform was not reflected in attitudinal differences.
Perceived participation in discharge planning and health related quality of life after stroke
Almborg, A.
(2008)
The overall aim of this thesis was to investigate the patients' and their relatives' perceived participation in discharge planning after stroke and the patients' health-related quality of life, depressive symptoms, performance of personal daily activities and social activities in connection with discharge. Another aim was to evaluate the psychometric assumptions of the SF-36 for Swedish stroke patients.Prospective, descriptive and cross-sectional designs were used to study all patients with stroke admitted to the stroke unit at a hospital in southern Sweden from October 1, 2003 to November 30, 2005 each with one close relative. The total sample consisted of 188 patients (mean age=74.0 years) and 152 relatives (mean age=60.1 years). Data were collected during interviews, 2-3 weeks after discharge.The results showed that less depressive symptoms, more outdoor activities and performance of interests are important variables that related to higher HRQoL. SF-36 functions well as a measure of health related quality of life in Swedish stroke patients, but the two summary scales have shortcomings. Compared to a Swedish normal population, scores on all scales/components of the SF-36 were lower among stroke patients especially in the middle-aged group. Most of the patients perceived that they received information, but fewer perceived participation in the planning of medical treatment and needs of care/service/rehabilitation and goal setting. The relatives perceived that they need more information and they perceived low participation in goal setting and needs assessment. The professionals seem to lack effective practices for involving patients and their relatives to perceive participation in discharge planning. It is essential to develop and to implement methods for discharge planning, including sharing information, needs assessment with goal setting that facilitate patients' and relatives' perceived participation. The results suggest that ICF can be used in goal setting and needs assessment in discharge planning after acute stroke.
Points of care. As the home care industry continues to expand, technology must connect caregivers to home base
Huvane, K.
(2008)
Practice standards to improve the quality of family and carer participation in adult mental health care: An overview and evaluation
Lakeman, R.
(2008)
Mental health services are required to involve family, carers, and service users in the delivery and development of mental health services but how this can be done in routine practice is challenging. One potential solution is to prescribe practice standards or clear expectation relating to family involvement. This paper describes practice standards introduced to an adult mental health service and a study that aimed to evaluate the impact of the standards on practice. Hospital and community files were audited before and after the introduction of standards for evidence of participation and surveys of carers and consumers relating to the quality of participation were undertaken. Increases in documented carer participation were found, particularly in relation to treatment or care planning. The expressed needs relating to participation varied in hospital and community settings. The majority of carers and service users were satisfied with their level of participation. The introduction of practice standards is an acceptable, inexpensive, and feasible way of improving the quality of family and carer participation, but gains may be modest.
Predictors of life situation among significant others of depressed or aphasic stroke patients
Franzen-Dahlin, A., Laska, A. C, Larson, J., Wredling, R., Billing, E. & Murray, V.
(2008)
Professional partners supporting family caregivers
Kelly, K., Reinhard, S. C. & Brooks-Danso, A
(2008)
Projekt anhörigstöd - en kartläggande studie av samarbetet mellan kommun och ideella. (Y-uppsats)
Andersson, M.
(2008)
Teknik eller relation?: kritiska faktorer i psykoterapi
Sandell, R.
(2004)
Telehomecare: Quality, perception, satisfaction
Finkelstein, S. M., Speedie, S. M., Demiris, G., Veen, M., Lundgren, J. M., & Potthoff, S.
(2004)
The burden of coronary, cerebrovascular and peripheral arterial disease
Bakhai A.
(2004)
Atherothrombosis is a potentially life-threatening generalised disease process that affects the coronary, cerebral and peripheral vasculature, with clinical manifestations including myocardial infarction, ischaemic stroke and peripheral arterial disease. Atherothrombosis represents a massive clinical and economic burden to healthcare, annually accounting for at least 22% of all deaths globally. Moreover, the prevalence of atherothrombotic disease is increasing as a result of increased longevity resulting in a larger cohort of older individuals. Stroke in particular is a major burden, and is the primary cause of adult disability, the second most important cause of dementia, and the third leading cause of death in industrialised countries. Atherothrombosis is also associated with a poor prognosis, significantly reducing life expectancy in the 60-year-old patient by 8–12 years depending on the vascular event. Moreover, this already shortened life expectancy is further and substantially reduced in patients with more than one atherothrombotic event. The economic burden of atherothrombosis is significant, particularly given its increasing prevalence, with the United States spending over US$300 billion on it. There is thus a need for effective intervention to prevent or reduce mortality and morbidity. Evidence-based medicine using economics, clinical trials data, outcomes research, epidemiology and risk stratification are necessary to target treatment effectively to patients at greatest risk, in an attempt to reduce the burden of atherothrombotic disease.
The evaluation of a learner-centred training programme for spouses of adults with chronic aphasia using qualitative case study methodology
Sorin-Peters R.
(2004)
Background: Family education, training, and counselling programmes have been cited as one way to complement traditional interventions for the individual with aphasia. However, the literature still represents the speech‐language pathologist as the expert in a directive role. Aims: This article describes the second phase of a research study aimed at addressing the psychosocial sequelae of aphasia by developing and studying the effects of a learner‐centred training programme for spouses of adults with chronic aphasia designed to improve conversational interaction between couples. The first phase of this research included the development of a communication‐training programme that integrated principles and strategies from speech‐language pathology and adult education (Sorin‐Peters, 2002). The second phase described in this paper included the delivery and evaluation of the programme using a qualitative case study methodology. The use of the qualitative case study methodology to study the psychosocial consequences of aphasia is described in a companion paper (Sorin‐Peters, 2004). This paper presents the results of one qualitative case study in detail to demonstrate how the qualitative case study methodology was implemented, and a summary of the cross‐case analysis for the five couples, examining the effectiveness of the programme. Methods & Procedures: Using videotaped data, the Couple Questionnaire, and a semi‐structured interview, this study examined changes in attitudes and communication behaviours in five couples immediately after conversation partner training and at 2 months follow‐up. All data were transcribed and analysed for patterns of change. Outcomes & Results: Communication outcomes included changes in conversational interaction as well as in the transaction of information in conversation for all five couples. These included positive changes in the management of conversational repair. There was more balanced control after training and the cognitive competence of the partners with aphasia was revealed following the training. In addition, different conversational genres emerged throughout the programme that could be organised hierarchically. Results indicated ways in which the adult learning principles were actualised across the five cases. Themes emerged related to the expression of emotion about aphasia, including feelings of anger, sadness, and grief, and increased acceptance of the aphasia after the training. Themes related to marital issues emerged and were intertwined with emotions and communication. Conclusions: The adult learning model approach promoted positive and comprehensive changes, and perhaps more than those achieved via existing medical‐model or psychosocial approaches. The adult learning approach to individuals with chronic aphasia extends the existing psychosocial model by acknowledging both the spouse's and person with aphasia's competence as adult learners, by viewing the person with aphasia not only as part of a social unit, including the family, but also as part of a broader system, including multiple environmental and cultural factors that interact interdependently to effect change, and by focusing on the importance of communication for the expression of emotions and the maintenance and development of marital relations. The results suggest the benefits of the expansion of the speech‐language pathologist's role with couples with aphasia to include an adult learning approach to improving conversational interaction between people with aphasia and their spouses.
The evaluation of a learner-centred training programme for spouses of adults with chronic aphasia using qualitative case study methodology
Sorin-Peters R.
(2004)
Background: Family education, training, and counselling programmes have been cited as one way to complement traditional interventions for the individual with aphasia. However, the literature still represents the speech‐language pathologist as the expert in a directive role. Aims: This article describes the second phase of a research study aimed at addressing the psychosocial sequelae of aphasia by developing and studying the effects of a learner‐centred training programme for spouses of adults with chronic aphasia designed to improve conversational interaction between couples. The first phase of this research included the development of a communication‐training programme that integrated principles and strategies from speech‐language pathology and adult education (Sorin‐Peters, 2002). The second phase described in this paper included the delivery and evaluation of the programme using a qualitative case study methodology. The use of the qualitative case study methodology to study the psychosocial consequences of aphasia is described in a companion paper (Sorin‐Peters, 2004). This paper presents the results of one qualitative case study in detail to demonstrate how the qualitative case study methodology was implemented, and a summary of the cross‐case analysis for the five couples, examining the effectiveness of the programme. Methods & Procedures: Using videotaped data, the Couple Questionnaire, and a semi‐structured interview, this study examined changes in attitudes and communication behaviours in five couples immediately after conversation partner training and at 2 months follow‐up. All data were transcribed and analysed for patterns of change. Outcomes & Results: Communication outcomes included changes in conversational interaction as well as in the transaction of information in conversation for all five couples. These included positive changes in the management of conversational repair. There was more balanced control after training and the cognitive competence of the partners with aphasia was revealed following the training. In addition, different conversational genres emerged throughout the programme that could be organised hierarchically. Results indicated ways in which the adult learning principles were actualised across the five cases. Themes emerged related to the expression of emotion about aphasia, including feelings of anger, sadness, and grief, and increased acceptance of the aphasia after the training. Themes related to marital issues emerged and were intertwined with emotions and communication. Conclusions: The adult learning model approach promoted positive and comprehensive changes, and perhaps more than those achieved via existing medical‐model or psychosocial approaches. The adult learning approach to individuals with chronic aphasia extends the existing psychosocial model by acknowledging both the spouse's and person with aphasia's competence as adult learners, by viewing the person with aphasia not only as part of a social unit, including the family, but also as part of a broader system, including multiple environmental and cultural factors that interact interdependently to effect change, and by focusing on the importance of communication for the expression of emotions and the maintenance and development of marital relations. The results suggest the benefits of the expansion of the speech‐language pathologist's role with couples with aphasia to include an adult learning approach to improving conversational interaction between people with aphasia and their spouses.
The impact of parental problem drug use on children: what is the problem and what can be done to help?
Barnard M, McKeganey N.
(2004)
AIM:
To review the literature on the impact of parental problem drug use on children, and indicate the efficacy of key evaluated interventions to reduce the impact of parental drug use on children.
METHODS:
Comprehensive narrative review of English language published research and intervention spanning the last three decades identified through searching library databases and citation.
FINDINGS:
Problem drug use can impede parenting and the provision of a nurturing environment. Although small-scale, localized and resource-intensive these key evaluated interventions show cautious optimism that problem drug-using parents can reduce drug use and achieve better family management. Children have rarely been directly the focus of intervention.
CONCLUSIONS:
Wider application and more rigorous evaluation of interventions in this area are needed. Given the scale of the problem it is important to establish how statutory services can apply the lessons of these more localized interventions.
The Pediatric Alliance for coordinated care: Evaluation of a medical home
Palfrey, J. S., Sofis, L. A., Davidson, E. J., Liu, J., Freeman, L., & Ganz, M. L.
(2004)
OBJECTIVES:
The American Academy of Pediatrics recommends a medical home for children with special health care needs (CSHCN). In the Pediatric Alliance for Coordinated Care (PACC), 6 pediatric practices introduced interventions to operationalize the medical home for CSHCN. The intervention consisted of a designated pediatric nurse practitioner acting as case manager, a local parent consultant for each practice, the development of an individualized health plan for each patient, and continuing medical education for health care professionals. The objectives of this study were 1) to characterize CSHCN in the PACC, 2) to assess parental satisfaction with the PACC intervention, 3) to assess the impact on hospitalizations and emergency department episodes, and 4) to assess the impact on parental workdays lost and children's school days lost for CSHCN before and during the PACC intervention.
METHODS:
A total of 150 CSHCN in 6 pediatric practices in the Boston, Massachusetts, area were studied. Participants were recruited by their pediatricians on the basis of medical/developmental complexity. Physicians completed enrollment information about each child's diagnosis and severity of condition. Families completed surveys at baseline and follow-up (at 2 years), assessing their experience with health care for their children.
RESULTS:
A total of 60% of the children had >5 conditions, 41% were dependent on medical technology, and 47% were rated by their physician as having a "severe" condition. A total of 117 (78%) families provided data after the intervention. The PACC made care delivery easier, including having the same nurse to talk to (68%), getting letters of medical necessity (67%), getting resources (60%), getting telephone calls returned (61%), getting early medical care when the child is sick (61%), communicating with the child's doctor (61%), getting referrals to specialists (61%), getting prescriptions filled (56%), getting appointments (61%), setting goals for the child (52%), understanding the child's medical condition (56%), and relationship with the child's doctor (58%). Families of children who were rated "severe" were most likely to find these aspects of care "much easier" with the help of the pediatric nurse practitioner. Satisfaction with primary care delivery was high at baseline and remained high throughout the study. There was a statistically significant decrease in parents missing >20 days of work (26% at baseline; 14.1% after PACC) and in hospitalizations (58% at baseline; 43.2% after PACC). The approximate cost per child per year of the intervention was 400 dollars.
CONCLUSIONS:
The PACC medical home intervention increases parent satisfaction with pediatric primary care. Those whose needs are most severe seem to benefit most from the intervention. There are some indications of improved health as well as decreased burden of disease with the intervention in place. The PACC model allows a practice to meet many of the goals of serving as a medical home with a relatively small financial investment.
The role of ethnicity in care of elderly Finnish immigrants
Heikkilä, K.
(2004)
The role of ethnicity in care of elderly Finnish immigrants Most Western countries are becoming increasingly multicultural because of immigration. Many of these immigrants grow old in a second homeland and will need health and elderly care in the future. In Sweden, the largest immigrant group comes from its neighbouring country, Finland. Little is known about how this group experiences present health care or their expectations of future elderly care. The overall aim of the thesis was to describe and to deepen the understanding of elderly Finnish immigrants experiences of health care and elderly care and the role that ethnicity played in these experiences. The specific aims were to: elucidate the elderly Sweden-Finns experiences and beliefs about health care in Sweden, in order to gain an understanding of how ethnic background affects the elderly immigrated persons experiences and beliefs in the host country (I); illuminate the role that culturally appropriate care plays in relation to the elderly Finnish immigrants wishes and expectations of institutional elderly care (II); describe and compare the elderly Finnish immigrants perceptions of health care, both among those who have continued to live in Sweden and those who have re-migrated to Finland (III); describe the cultural adjustments that had been made at a specific elderly care setting, the Finnish Home, and illustrate the impact of cultural adjustments on care, as conditions that promoted the well-being of the residents (IV). All the participants were born in Finland and Finnish was their native language and they lived (I-II and IV) or had lived in Sweden. In I-II, the 39 participants were 75 years or older and in III-IV, 65 years or older. In III, 217 persons participated in Finland, and 643 persons participated in Sweden. All residents, staff and visitors of Finnish Home participated in IV. Qualitative interviews were conducted in the participants homes (I-II), a mailed questionnaire was used in Study III, and an ethnographic study design was used in Study IV. Several different analysis methods were used: Hermeneutical ad hoc analysis (I), latent content analysis (II), statistical analysis (III), and an ethnographic method (IV). The results show that the Swedish health care system is congruent with the elderly Finnish immigrants expectations (I), and their experiences of care were good (III). Their experiences of the Finnish health care system were also good (III). However, sharing the same ethnic background as the care providers was believed to lead to better care (I). When thinking about future elderly care, the elderly Finnish immigrants wished to feel familiarity, continuity in life, security, and companionship. This could be achieved either in the well-known physical environment of their current homes, in an elderly care setting in their part of town, or in a well-known socio-cultural environment at an elderly care setting where Finnish was spoken and the care providers and fellow-residents were Finns (II). When being cared for in a culturally adjusted elderly care setting, the care became culturally congruent as the care providers, and the residents played the same language and ethnicity game (IV). The conclusions from the thesis show that ethnicity and ethnic identity, a shared mother language, and the place, play an important role in the care of elderly Finnish immigrants. In addition to this, the elderly Finns experienced a feeling of at-homeness when being cared for by members of their own ethnic group, in a familiar place, with people who spoke the same native language.
The World Health Organisation's terminology and classification: application to severe disability
Bornman J.
(2004)
Purpose: The purpose of this article is to describe the international classification system proposed by the World Health Organisation for describing individuals with disability. Initially the 'International classification of impairment, disability and handicap' (ICIDH) was used. This has been replaced by the 'International classification of functioning, disability and health' (ICF). Both of these systems will be described and followed by a discussion of the advantages and disadvantages of using the WHOs classification framework. An application to the field of severe disability will be made throughout.
Method: Providing a theoretical framework for classification of disability in accordance with the system proposed by the WHO.
Results: The ICF is a useful tool that contributes to uniformity of international terminology and standardization in the disability field. It is not a minority model, and focuses on strengths and skills.
Conclusions: An international classification system such as the ICF offers a conceptual framework for information that is relevant to the long-term consequences of disability. Although any type of classification system has certain limitations, the advantages present within the ICF outweigh the limitations.
Through children's eyes: children's experience of living with a parent with an acquired brain injury
Butera-Prinzi, F., & Perlesz, A.
(2004)
While previous literature on brain injury reports high levels of stress and burden in primary caregivers, the impact on children has been overlooked. This paper reports on an in-depth, qualitative research project exploring the experiences of four children living with fathers with an acquired brain injury (ABI). The findings indicate that these children were negatively impacted and at risk of emotional and behavioural difficulties. The children reported a complexity of feelings associated with the trauma and multiple losses, including profound grief, social isolation and fear of family disintegration and violence. Despite the difficulties they faced, the children also demonstrated resilience and reported positive outcomes such as having greater independence. Although only a small pilot study, the current findings highlight the need for both clinicians and researchers to be more proactive in questioning their clients and families about the level of violence following ABI and that disclosure may be more likely to occur with on-going involvement and support. The study concludes that early intervention and systemic support is required to minimize the trauma for these children. Further research is recommended, not only to replicate these findings in a larger sample, but also to explore in-depth children's experience of living with a parent with a brain injury.
Tillit som bot. Placebo i tid och rum
Sachs, Lisbet
(2004)
Tillit ger reaktioner i hjärnan som påverkar känslan och därmed kroppen. Sådan förväntan och tillit har inte blivit medicinskt utforskad. Det har blivit allt svårare att avfärda skildringar av läkande ritualer och magi från andra länder som enbart anekdoter.
Boken vänder sig till medicin- och antropologistuderande och studenter inom vård och omsorg samt alla de som i olika befattningar och roller är verksamma inom vården.
Tre generationer utvecklingsstörda mödrar och deras familjenätverk
Traustadóttir, Rannveig & Sigurjónsdóttir Björg Hanna
(2004)
Treating childhood traumatic grief: a pilot study
Cohen, J.A., Mannarino, A.P. & Knudsen, K.
(2004)
Abstract
OBJECTIVE:
To examine the potential efficacy and specific timing of treatment response of individual child and parent trauma-focused cognitive-behavioral therapy for childhood traumatic grief (CTG), a condition in which trauma symptoms impinge on the child's ability to successfully address the normal tasks of grieving.
METHOD:
Twenty-two children and their primary caretakers received a manual-based 16-week treatment with sequential trauma- and grief-focused interventions.
RESULTS:
Children experienced significant improvements in CTG, posttraumatic stress disorder (PTSD), depressive, anxiety, and behavioral problems, with PTSD symptoms improving only during the trauma-focused treatment components and CTG improving during both trauma- and grief-focused components. Participating parents also experienced significant improvement in PTSD and depressive symptoms.
CONCLUSIONS:
The timing of improvements in CTG and PTSD symptoms lends support to providing sequential trauma- and grief-focused interventions and to the concept that CTG is related to but distinct from PTSD. The results also suggest the benefit of individual treatment for CTG and for including parents in the treatment of CTG. Randomized, controlled trials are needed to further test the efficacy of this treatment model.
Tutorial: Teaching communicative rejecting to children with severe disabilities
Sigafoos J, Drasgow E, Reichle J, O'Reilly M, Green VA, Tait K.
(2004)
Children with severe disabilities typically require systematic instruction to develop their communication abilities. Intervention can begin by teaching functional communication skills related to requesting and rejecting. Although a considerable amount of research has focused on teaching requesting, there is an emerging literature on teaching rejecting. The aim of this tutorial is to review the emerging literature on teaching communicative rejecting to children with severe disabilities. This review considers (a) the definition of communicative rejecting, (b) reasons for teaching communicative rejecting, (c) types of communicative rejecting, and (d) empirically validated strategies for teaching communicative rejecting to children with severe disabilities. The authors include a case study to illustrate the major steps in teaching communicative rejecting to children with severe disabilities. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)
Tutorial: Teaching Communicative Rejecting to Children With Severe Disabilities
Sigafoos, J., Drasgow, E., Reichle, J., O'Reilly, M., Green, V. A., & Tait, K.
(2004)
Children with severe disabilities typically require systematic instruction to develop their communication abilities. Intervention can begin by teaching functional communication skills related to requesting and rejecting. Although a considerable amount of research has focused on teaching requesting, there is an emerging literature on teaching rejecting. The aim of this tutorial is to review the emerging literature on teaching communicative rejecting to children with severe disabilities. This review considers (a) the definition of communicative rejecting, (b) reasons for teaching communicative rejecting, (c) types of communicative rejecting, and (d) empirically validated strategies for teaching communicative rejecting to children with severe disabilities. The authors include a case study to illustrate the major steps in teaching communicative rejecting to children with severe disabilities.
Tutorial: Teaching Communicative Rejecting to Children With Severe Disabilities
Sigafoos, J., Drasgow, E., Reichle, J., O'Reilly, M., Green, V. A., & Tait, K.
(2004)
Children with severe disabilities typically require systematic instruction to develop their communication abilities. Intervention can begin by teaching functional communication skills related to requesting and rejecting. Although a considerable amount of research has focused on teaching requesting, there is an emerging literature on teaching rejecting. The aim of this tutorial is to review the emerging literature on teaching communicative rejecting to children with severe disabilities. This review considers (a) the definition of communicative rejecting, (b) reasons for teaching communicative rejecting, (c) types of communicative rejecting, and (d) empirically validated strategies for teaching communicative rejecting to children with severe disabilities. The authors include a case study to illustrate the major steps in teaching communicative rejecting to children with severe disabilities.
Tänk långsiktigt – En samhällsekonomisk modell för prioriteringar som påverkar barns psykiska hälsa.
Skolverket/ Socialstyrelsen/Statens folkhälsoinstitut
(2004)
Psykisk ohälsa är ett allvarligt hälsoproblem bland barn och ungdomar och därmed ett angeläget område för samhällsinsatser. Det mesta av de resurser som samhället satsar på barn och ungdomar ges i form av generella insatser. Mödra- och barnhälsovård, förskoleverksamhet, skola, skolhälsovård, skolbarnsomsorg och ungdomsmottagningar är exempel på vanliga verksamheter. Andra samhällsinsatser (t.ex. insatser inom socialtjänsten och barn- och ungdomspsykiatrin) riktas enbart till barn och ungdomar som på olika sätt far illa eller behöver särskilt stöd. Sådana insatser kallas selektiva.
Även om barns och ungdomars psykiska hälsa och goda uppväxtvillkor är högt prioriterade områden är samhällets resurser begränsade. Det är därför viktigt att tillgängliga resurser används så väl som möjligt, dvs. att man lägger pengarna på insatser som har så bra effekter som möjligt i förhållande till vad de kostar. Syftet med denna rapport är att beskriva vikten av att ha ett sektorsövergripande och långsiktigt perspektiv när man på olika nivåer inom kommuner, landsting och stat ska prioritera mellan insatser som påverkar barns och ungdomars psykiska hälsa.
Barns och ungdomars psykiska hälsa påverkas av såväl individuella egenskaper som av faktorer i uppväxtmiljön. Generella insatser av hög kvalitet kan sannolikt förebygga och minska psykisk ohälsa hos barn och ungdomar. Eftersom de generella insatsernas innehåll, organisation och resurser har betydelse för hur barnen mår påverkar de troligen även omfattningen av de selektiva insatser som en del barn och ungdomar kan komma att behöva under sin uppväxt och längre fram i livet. Det är troligt att det fanns ett samband mellan nedskärningarna inom förskoleverksamheten, skolbarnsomsorgen och skolan under 1990-talet och den samtidiga ökningen av antalet besök inom barn- och ungdomspsykiatrin. Samtidigt kan detta vara ett tecken på att samverkan mellan t.ex. skolan och barn- och ungdomspsykiatrin inte har fungerat tillfredsställande när det gäller att ge förebyggande stöd till barn efter deras behov utifrån olika kompetenser.
Den internationella litteraturgenomgång som gjorts till rapporten visar att det finns ett visst forskningsstöd för att exempelvis föräldrastöd, personal- och lärartäthet i förskolan och skolan, särskilda pedagogiska insatser samt lärarnas kompetens har betydelse för barns och ungdomars skolprestationer och psykiska hälsa. Det bör understrykas att detta inte innebär att man säkert vet att övriga insatser saknar effekt.
Det saknas i stor utsträckning svensk forskning om effekter av generella insatser för barn och ungdomar. Bristen på relevanta studier medför svårigheter när man ska utvärdera olika insatsers samhällsekonomiska konsekvenser. Mot bakgrund av hur stor betydelse de generella verksamheterna har för barns och ungdomars uppväxtmiljö är det viktigt att kunskapen om deras effekter på barns psykiska hälsa ökar. För att detta ska vara möjligt måste man, förutom att intensifiera forskningen, lokalt satsa på att dokumentera och följa upp de insatser som ges till barn och ungdomar. Detta är ett viktigt metodutvecklingsverktyg och en grund för att utveckla beprövad erfarenhet som kan spridas, diskuteras och jämföras med andra resultat.
I rapporten presenteras en samhällsekonomisk modell där kostnaderna för generella insatser ställs mot insatsernas effekter på barns och ungdomars psykiska hälsa och de samhällsekonomiska vinster som dessa i sin tur ger upphov till. Modellen bygger på ett tänkesätt för prioriteringar som inte bara tar hänsyn till den berörda huvudmannens kostnader för en viss insats, utan också till hur kostnaderna påverkas i andra samhällssektorer och på längre sikt.
För att göra en samhällsekonomisk analys inom detta område behöver man veta vad olika tänkbara insatser kostar och vilka effekter de har på barns och ungdomars psykiska hälsa. Man behöver också veta hur detta påverkar samhällets kostnader för andra insatser på kort och lång sikt. I rapporten ges exempel på vad olika generella insatser för barn och ungdomar kostar. Dessa kostnader jämförs sedan dels med kostnader för olika selektiva insatser för barn och ungdomar, dels med exempel på samhällets kostnader för psykisk ohälsa hos vuxna personer. De beräkningar som presenteras ska ses som exempel på en analysmetod och de är inte i första hand avsedda att användas som underlag för jämförelser och val mellan olika tänkbara insatser.
Samhällets kostnader kan bli relativt höga redan på förhållandevis kort sikt om psykiska problem inte förebyggs och motverkas i ett tidigt skede. Kostnaderna för en familjehemsplacering under två år uppgår till knappt 800 000 kronor och för en HVBplacering under totalt ett år till ca 1,1 miljoner kronor. Om dessa insatser inte visar sig tillräckliga blir kostnaderna ännu högre. I rapporten ges även exempel på vad kostnaderna för psykisk ohälsa kan uppgå till om den kvarstår under vuxenlivet. Om en person utvecklar psykosociala arbetshinder kan samhällskostnaderna uppgå till omkring 2 miljoner kronor under en trettioårsperiod. Även kostnaderna för psykiska sjukdomstillstånd kan vara höga, ca 7–9 miljoner kronor enligt det exempel som valts. För en enda missbrukare kan samhällets kostnader uppgå till omkring 12–15 miljoner kronor under en trettioårsperiod beroende på hur mycket kostnaderna diskonteras.
En rimlig hypotes är att det finns en samhällsekonomisk potential i att satsa på förebyggande arbete inom de generella verksamheterna för barn och ungdomar, inte minst mot bakgrund av att de framtida selektiva insatser som kan komma att behövas är så kostsamma. Kunskapen är dock inte tillräcklig för att man med säkerhet ska kunna säga att en viss insats innebär en framtida ekonomisk vinst. För att ändå få en uppfattning kan man räkna ut hur många barn som kan få en viss insats för den kostnad som sparas in om ett enda fall av psykosociala arbetshinder, psykisk sjukdom eller missbruk förebyggs. Om man t.ex. förebygger en enda persons missbruk under vuxenlivet, kan man för samma kostnad ge stödjande utbildning som syftar till att utveckla föräldrarnas kompetens och sätt att bemöta sina barn till ca 3 400 eller 6 900 barns föräldrar beroende på hur kostnaderna diskonteras. Den här typen av utbildningar har visat sig effektiv när det gäller att förebygga utåtriktade psykiska problem hos barn och ungdomar. Det förefaller inte orimligt att man genom en så omfattande utbildningsinsats kan förhindra att minst ett av barnen kommer att leva som missbrukare. Det är vad som krävs för att insatsen ska vara samhällsekonomiskt lönsam på lång sikt.
Samhällsekonomiska analyser behöver kompletteras med en beskrivning av de fördelningseffekter som insatsen leder till. Dessa kan vara av två slag. En del handlar om att beskriva vilka barn som gynnas av insatsen. Är det de barn som är mest angelägna att nå? Den andra delen handlar om att det är viktigt att beskriva var i samhället som olika kostnader och besparingar uppstår. Vissa samhällssektorer och huvudmän kan få högre respektive lägre kostnader som en följd av insatsen, vilket det är viktigt att vara medveten om eftersom det kan påverka aktörernas incitament för att genomföra olika insatser.
I rapporten illustreras detta med ett räkneexempel som tar fasta på att samhällskostnaderna för en person med psykosociala arbetshinder under 30 år är ungefär lika höga som kostnaderna för att minska klasstorleken i grundskolan för 80 barn under ett år. Om man antar att den förebyggande insatsen kan leda till att ett fall av psykosociala arbetshinder förebyggs går samhället som helhet varken med vinst eller förlust på lång sikt. För de enskilda aktörerna ser dock bilden olika ut. Kommunen har kostnader för genomförandet av insatsen som uppgår till drygt en miljon kronor. Dessa kostnader uppvägs i viss mån av att kommunens kostnader för psykosociala arbetshinder minskar i framtiden. Kommunen har dock ändå en nettokostnad på ca 650 000 kronor. För de övriga aktörerna som påverkas av psykosociala arbetshinder, t.ex. försäkringskassan, innebär däremot insatsen en ren intäkt. Ur ett strikt ekonomiskt perspektiv framstår alltså minskad klasstorl
Anhörigstöd i förändring - en studie om anhörigstöd i äldreomsorgen [C-uppsats].
Janz, M.
(2008)
Anhörigstödets grundpelare
Johansson, L.
(2008)
Anhörigstödets grundpelare
Johansson, L.
(2008)
Ett framgångsrikt anhörigstöd står på några viktiga grundpelare. En av dessa är att stödet tillför något positivt till både den anhörige och den demenssjuke. Det menar docent Lennarth Johansson.
Anhörigvård med trygghet för alla
Singh Y.
(2008)
Anhörigvårdarens upplevelser av roller och känslor i relation till närstående och växelboende
Josefsson, L.
(2008)
Denna studie syftar till att se hur anhöriga, som har rollen som anhörigvårdare, beskriver sin roll i relation till sin make/maka, vilken funktion och betydelse växelboendet har för den enskilda familjen, samt hur anhörigvårdaren upplever kommunikationen mellan boendet och hemmet. För att få fram den subjektiva
upplevelsen valdes kvalitativ metod med intervjuer. Där anhörigvårdarens upplevelse är i fokus.
Anhörigvårdarens upplevelser av roller och känslor i relation till närstående och växelboende
Josefsson, L.
(2008)
Denna studie syftar till att se hur anhöriga, som har rollen som anhörigvårdare, beskriver sin roll i relation till sin make/maka, vilken funktion och betydelse växelboendet har för den enskilda familjen, samt hur anhörigvårdaren upplever kommunikationen mellan boendet och hemmet. För att få fram den subjektiva
upplevelsen valdes kvalitativ metod med intervjuer. Där anhörigvårdarens upplevelse är i fokus.
Anhörigvårdares nyttjande och upplevelser av kommunalt stöd [Elektronisk resurs]
Sköld, M. & Sundberg, S.
(2008)
Anhörigvårdares nyttjande och upplevelser av kommunalt stöd [Elektronisk resurs].
Sköld, M. & Sundberg, S.
(2008)
Anknytning i praktiken: Tillämpningar av anknytningsteorin
BROBERG, A., RISHOLM MOTHANDER, P., GRANQVIST, P. & IVARSSON, T.
(2008)
Anknytning i praktiken ger ett fylligt kunskapsunderlag till hur anknytningsteorin kan tillämpas från spädbarnsåren till vuxen ålder. Anknytningsteorin anses idag vara den viktigaste psykologiska teorin för att förstå hur människor hanterar närhet, omsorg och självständighet i relationer. Här beskrivs klinisk späd- och småbarnspsykologi, föräldraskap och familjeliv samt hur forskare och kliniker kan mäta anknytningstrygghet hos barn, ungdomar och vuxna. Författarna redogör utförligt för hur de olika anknytningsmönstren påverkar psykisk hälsa och ohälsa i olika åldrar, samt diskuterar psykoterapi utifrån ett anknytningsperspektiv. Detta är den fristående fortsättningen på Anknytningsteori: betydelsen av nära känslomässiga relationer (2006).
Boken riktar sig till studerande och yrkesverksamma inom psykologi, medicin, psykiatri, psykoterapi, socialt arbete, barnhälsovård och skola.
Anders Broberg är professor i klinisk psykologi, leg. psykolog och leg. psykoterapeut. Pia Risholm Mothander är fil.dr, lektor i utvecklingspsykologi samt leg. psykolog och leg. psykoterapeut. Pehr Granqvist är docent och forskarassistent i psykologi. Tord Ivarsson är docent i barn- och ungdomspsykiatri och överläkare.
Innehåll
1. Inledning
2. Anknytning ur ett familjeperspektiv
3. Klinisk spädbarnspsykologi
4. Anknytningsbaserade interventioner i späd- och småbarnsfamiljer
5. Anknytningsmätning under barndomen
6. Desorganiserad/desorienterad anknytning
7. Psykopatologi i barn- och ungdomsåren ur ett anknytningsperspektiv
8. Att bedöma anknytningstrygghet hos äldre ungdomar och vuxna
9. Anknytning och psykopatologi hos vuxna
10. Anknytningsteori och psykoterapi
11. Anknytning, religiositet och andlighet
12. Avslutande synpunkter
Extramaterial finns på bokens hemsida www.nok.se/anknytning.
Anknytning i praktiken: Tillämpningar av anknytningsteorin
BROBERG, A., RISHOLM MOTHANDER, P., GRANQVIST, P. & IVARSSON, T.
(2008)
Anknytning i praktiken ger ett fylligt kunskapsunderlag till hur anknytningsteorin kan tillämpas från spädbarnsåren till vuxen ålder. Anknytningsteorin anses idag vara den viktigaste psykologiska teorin för att förstå hur människor hanterar närhet, omsorg och självständighet i relationer. Här beskrivs klinisk späd- och småbarnspsykologi, föräldraskap och familjeliv samt hur forskare och kliniker kan mäta anknytningstrygghet hos barn, ungdomar och vuxna. Författarna redogör utförligt för hur de olika anknytningsmönstren påverkar psykisk hälsa och ohälsa i olika åldrar, samt diskuterar psykoterapi utifrån ett anknytningsperspektiv. Detta är den fristående fortsättningen på Anknytningsteori: betydelsen av nära känslomässiga relationer (2006).
Boken riktar sig till studerande och yrkesverksamma inom psykologi, medicin, psykiatri, psykoterapi, socialt arbete, barnhälsovård och skola.
Anders Broberg är professor i klinisk psykologi, leg. psykolog och leg. psykoterapeut. Pia Risholm Mothander är fil.dr, lektor i utvecklingspsykologi samt leg. psykolog och leg. psykoterapeut. Pehr Granqvist är docent och forskarassistent i psykologi. Tord Ivarsson är docent i barn- och ungdomspsykiatri och överläkare.
Innehåll
1. Inledning
2. Anknytning ur ett familjeperspektiv
3. Klinisk spädbarnspsykologi
4. Anknytningsbaserade interventioner i späd- och småbarnsfamiljer
5. Anknytningsmätning under barndomen
6. Desorganiserad/desorienterad anknytning
7. Psykopatologi i barn- och ungdomsåren ur ett anknytningsperspektiv
8. Att bedöma anknytningstrygghet hos äldre ungdomar och vuxna
9. Anknytning och psykopatologi hos vuxna
10. Anknytningsteori och psykoterapi
11. Anknytning, religiositet och andlighet
12. Avslutande synpunkter
Extramaterial finns på bokens hemsida www.nok.se/anknytning.
Anknytning i praktiken: tillämpningar av anknytningsteorin.
Broberg, Anders, Risholm-Mothander, Pia, Granqvist, Pehr, Ivarsson, Thord
(2008)
Anknytning i praktiken ger ett fylligt kunskapsunderlag till hur anknytningsteorin kan tillämpas från spädbarnsåren till vuxen ålder. Anknytningsteorin anses idag vara den
viktigaste psykologiska teorin för att förstå hur människor hanterar närhet, omsorg och självständighet i relationer. Här beskrivs klinisk späd- och småbarnspsykologi, föräldraskap och familjeliv samt hur forskare och kliniker kan mäta anknytningstrygghet hos barn, ungdomar och vuxna. Författarna redogör utförligt för hur de olika anknytningsmönstren påverkar psykisk hälsa och ohälsa i olika åldrar, samt diskuterar psykoterapi utifrån ett anknytningsperspektiv. Detta är den fristående fortsättningen på Anknytningsteori: betydelsen av nära känslomässiga relationer (2006).
Boken riktar sig till studerande och yrkesverksamma inom psykologi, medicin, psykiatri, psykoterapi, socialt arbete, barnhälsovård och skola.
Anders Broberg är professor i klinisk psykologi, leg. psykolog och leg. psykoterapeut. Pia Risholm Mothander är fil.dr, lektor i utvecklingspsykologi samt leg. psykolog och leg. psykoterapeut. Pehr Granqvist är docent och forskarassistent i psykologi. Tord Ivarsson är docent i barn- och ungdomspsykiatri och överläkare.
Arbeidstakere og omsorg for gamle foreldre - den nye tidsklemma.
Gautun H.
(2008)
Assessment of informal carers: what implications will the new Strategy for Carers have?
Mackenzie, A & Greenwood, N.
(2008)
Asta 90: "Nu ska jag sluta besöka pensionärer!"
Hjorth, Aronsson, C.
(2008)
Att förverkliga rättigheter genom personlig assistans
Larsson, Monica
(2008)
Doktorsavhandling 32
I denna avhandling undersöks på vilka sätt en juridisk och individuell rättighet som personlig assistans för människor med omfattande funktionshinder, kan förverkligas. Personlig assistans infördes 1994, som en del av lagen om stöd och service till vissa funktionshindrade (LSS). Avhandlingen fokuserar på hur förverkligandet kan ske främst genom lagstiftning, men också i praktiken med utgångspunkt ifrån rättighetens konstruktion.
Analysen är influerad av olika perspektiv, t.ex. rättsstatliga och välfärdsstatliga principer, men också av vissa centrala begrepp. De begrepp, som används för att förstå det empiriska materialet, är: rätt, norm och rättighet. Fallstudien används som forskningsstrategi och består av en dokumentstudie och en rättsfallsstudie. Därutöver används datamaterial från två empiriska studier där primärmaterial om personliga assistenter har samlats in.
Resultaten från studien visar att en social rättighet som personlig assistans är formad av det sammanhang och den tid den skapas i. Utformningen är också beroende av vilka intressenter som medverkar. En del av rättigheten personlig assistans är utformad som en juridisk rättighet och i rättslig mening stark. Olika normer om innehållet i rättigheten visar sig i på rättslig nivå och i praktiken. Grundläggande handikappolitiska intentioner om rättighen har påverkat praktiken och visar sig i denna som något ursprungligt och unikt. Rättigheten kan i denna mening förstås som förverkligad, även om den i stor utsträckning visar sig vara starkare som idé än som praktik.
Att leva med en Demenssjuk förälder
Lundström, K., Wågström, L. & Axelsson, S
(2008)
Att möta och bemöta anhöriga i äldreomsorgen
Normann, M., & Fröling, K
(2008)
Nära och kära - att möta och bemöta anhöriga i äldreomsorgen ger dig som arbetar i äldreomsorgen vägledning i vad som är viktigt att tänka på i mötet med de anhöriga. Bokens första del handlar om människans villkor och förutsättningar för kommunikation och är giltiga för de flesta arbetsplatser inom vård och omsorg. I bokens andra del anpassas kunskaperna på mötet med anhöriga och anhörigvårdare till äldre, sjuka och funktionshindrade. I boken finns också förslag till reflektioner, egna och i grupp, samt tips för vidare läsning.
Den senaste upplagan, utgiven oktober 2010, är utökad med ett kapitel som beskriver en äldres situation ur fem olika perspektiv: den anhöriga, sjukgymnasten, kontaktpersonen, chefen på äldreboendet samt biståndshandläggaren. Alla skapar sin bild utifrån sina förutsättningar och kapitlet ger en insikt i den komplexitet som finns inom äldreomsorgen.
Nära och kära är skriven för personal inom äldreomsorgen. Men den får gärna inspirera alla som i sitt yrke möter anhöriga! Författare är Margareta Normann och Kristina Fröling .
Att mötas i samtal. Samtalet som redskap i kommunikationen mellan hemmet och skolan
Rönnqvist, L.
(2008)
Att utgå från människan i livet istället för människan i vården. En utvärdering av patient- och närståendeutbildningar enligt Akermodellen och samtalscirklar genomförda i projektet ”Det goda livet
Johansson, Anna-Carin
(2008)
Att utveckla anhörigstöd
Genell Andrén K, Johansson L.
(2008)
Anhöriga gör stora insatser i vården och omsorgen av sina närstående. Men som anhörig kan man också behöva stöd och avlastning.
Att vara sin sjukdom: Om psykiskt funktionshinder och åldrande.
Bülow, Per & Svensson, Tommy
(2008)
Vi har hittills haft begränsad kunskap om funktionshindrade människors liv över tid och om innebörden i att leva med funktionshinder under många år. Vad innebär det att åldras med funktionshinder? Hur gestaltar sig "äldreblivandet" om man redan har betydande funktionsnedsättningar sedan tidigare i livet och kanske tvingats lämna arbetslivet långt före gängse pensionsålder? Hur är det att, som en till åren kommen förälder, fortfarande vara den som hjälper sitt vuxna, funtionshindrade barn? Hur ser den formella och informella omsorgssituationen ut? Det är frågor som den här boken belyser och den fyller därmed ett viktigt kunskapsbehov. Boken utgår från ett livsloppsperspektiv. Den centrala frågan är sålunda hur livet idag gestaltar sig för funktionshindrade människor som vuxit upp och levt under vissa historiska villkor. Här ryms även ett anhörigperspektiv där denna fråga studeras på motsvarande sätt. Bokens sex kapitel diskuterar de här frågorna med olika tonvikt och med utgångspunkt från både fysiskt och psykiskt funktionshindrades förhållanden. Samtliga författare bedriver forskning med anknytning till bokens huvudfråga. Att åldras med funktionshinder riktar sig främst till högskolestuderande inom samhälls- och beteendevetenskap, socialt arbete, social omsorg och vård, liksom till yrkesverksamma inom fältet. Den kan också vara värdefull för en intresserad allmänhet.
Att våga vara nära
Ferm, M. and J. Beskow
(2008)
Att åldras med funktionshinder
Jeppsson-Grassman, Eva (red.)
(2008)
Vi har hittills haft begränsad kunskap om funktionshindrade människors liv över tid och om innebörden i att leva med funktionshinder under många år. Vad innebär det att åldras med funktionshinder? Hur gestaltar sig "äldreblivandet" om man redan har betydande funktionsnedsättningar sedan tidigare i livet och kanske tvingats lämna arbetslivet långt före gängse pensionsålder? Hur är det att, som en till åren kommen förälder, fortfarande vara den som hjälper sitt vuxna, funtionshindrade barn? Hur ser den formella och informella omsorgssituationen ut? Det är frågor som den här boken belyser och den fyller därmed ett viktigt kunskapsbehov.
Boken utgår från ett livsloppsperspektiv. Den centrala frågan är sålunda hur livet idag gestaltar sig för funktionshindrade människor som vuxit upp och levt under vissa historiska villkor. Här ryms även ett anhörigperspektiv där denna fråga studeras på motsvarande sätt. Bokens sex kapitel diskuterar de här frågorna med olika tonvikt och med utgångspunkt från både fysiskt och psykiskt funktionshindrades förhållanden. Samtliga författare bedriver forskning med anknytning till bokens huvudfråga.
Att åldras med funktionshinder riktar sig främst till högskolestuderande inom samhälls- och beteendevetenskap, socialt arbete, social omsorg och vård, liksom till yrkesverksamma inom fältet. Den kan också vara värdefull för en intresserad allmänhet.
Attitudes and perceived barriers to working with families of persons with severe mental illness: Mental health professionals’ perspectives
Kim, H.-W., & Salyers, M.P.
(2008)
A state-wide survey of 453 clinicians serving people with severe mental illness in community mental health centers evaluated the degree to which they provide services to families and their perceptions of barriers to developing such services. Most clinicians did not provide many services to families and reported barriers related to the family or client (e.g., family's lack of interest) and their own work environment (e.g., heavy workload). Clinicians who had received prior training on working with families provided more services, had more positive attitudes toward family, and felt more competent about their knowledge, confirming the importance of staff training.
Av kärlek och plikt : Anhörigas beskrivningar av sitt deltagande i närståendes omsorgsbehov och deras uppfattningar av förhållandet till offentlig äldreomsorg. C-uppsats,
Hagborg-Randholm, L.
(2008)
Avesta avlösarteam : Hur avlösning i hemmet kan anpassas till individuella behov (DFR-rapport ).
Stålgren Lind, M
(2008)
Avesta avlösarteam. Hur avlösning i hemmet kan anpassas till individuella behov
Stålgren Lind, M.
(2008)
Resultatenhetschefen, som är ansvarig för verksamheten poängterar att anhörigstöd innebär "ett annat synsätt och en annan lyhördhet för en annan problematik", vilket kräver ett visst förhållningssätt. Vikten av att det är samma person som avlöser vid varje tillfälle betonas, eftersom det gör att både den anhörige och den sjuke närstående kan känna sig trygga.
I dagsläget är det tre undersköterskor som arbetar som avlösare. De har fått särskild utbildning i medmänskligt stöd, palliativ vård, stroke och demens. Avlösarteamet har ett möte med anhörigsamordnaren varje vecka och varannan månad får gruppen professionell handledning av en beteendevetare. Samtliga undersköterskor i avlösarteamet framhåller att teamet fungerar mycket bra. De säger till och med att arbetssättet är något de "spånat på flera gånger i livet, just att få jobba i team mot samma mål och nu är man här". De betonar att de vuxit som människor, att de upplever att de kan göra skillnad och att de inte skulle vilja byta tillbaka till hur de arbetade tidigare. Avlösarna understryker att arbetet i avlösarservicen skiljer sig mycket från arbetet i hemtjänsten. I dagsläget har avlösarna sex till åtta hushåll var som de arbetar i, vilket framhålls som maxantalet som de hinner med. Efterfrågan fortsätter emellertid att öka.
Flera av dem som idag har avlösarinsatser i hemmet har inte tidigare haft någon kontakt med den offentliga vården och omsorgen. Avlösarteamet poängterar att de skulle kunna hitta många fler som har behov av den här insatsen, men att ett stort antal av dem som vårdas hemma anses för friska för att den anhörige ska få beviljat anhörigstöd. Detta gör att anhörigstödet inte kan fylla den preventiva funktion som det borde.
De anhöriga har varit uteslutande positiva till avlösarteamet och pekat på omfattande kvalitetsförbättringar i deras enskilda liv. Samtliga anhöriga framhåller att det är ytterst viktigt att det är samma person som kommer och avlöser i hemmet, för att skapa trygghet och kontinuitet för den närstående. För den som är demenssjuk är detta särskilt viktigt.
Det hembesök som görs inledningsvis beskrivs som mycket positivt. De som är berörda får möjlighet att bekanta sig med varandra i hemmiljön, och det skapar förutsättningar för att man ska känna sig trygg med den nya insatsen. Familjen tycker också att det är mycket positivt att det är kommunen som tar kontakt och initierar hembesöket eftersom det många gånger kan vara svårt att ta det steget själv.
Arbetssättet möjliggör såväl flexibilitet och kontinuitet som trygghet och individanpassning. Dessutom görs sannolikt ekonomiska besparingar på lång sikt i och med att en inflyttning på ett heldygnsboende kan skjutas upp, men också genom att anhörigas hälsa och ork bevaras. Det finns ett stort stöd för arbetssättet inom samtliga led i kommunen och i slutet av år 2007 beslutades att avlösarna helt och hållet ska lyftas ur sina ordinarie arbeten för att arbeta i avlösarteamet. Detta kommer att underlätta mycket för såväl avlösarna, som får en tydligare roll och en mer regelbunden arbetssituation, som för de anhöriga, som får lättare att boka tider som passar deras behov. Om avlösarteamet vidareutvecklas till att även fungera som demensteam vid behov görs ytterligare kvalitetsvinster.
Teamet arbetar för närvarande med avlösarservice i 26 hushåll. Finns det tid över prioriteras den efter behov för individuellt stöd, råd och handledning till anhörigvårdaren, utöver den avlösningen om tio timmar/månad. Ambitionen är att ge stödet så tidigt som möjligt för att förebygga ohälsa och öka chansen till bibehållen livskvalitet. Avlösarteamet har också fått tid för reflektion, handledning och dokumentation. Skulle det därutöver finnas tid ger teammedlemmarna lite "guldtid" för de boende på ett av kommunens demensboende.
Balansgången mellan den äldres rätt och anhörigas rätt är inte alltid så lätt" Biståndshandläggares upplevelse av samverkan med anhöriga inom äldreomsorgen [C-uppsats]
Lantz Selind, H. & Åkerblom, M.
(2008)
Bara funktionshindrad? Funktionshinder och intersektionalitet
Grönvik, Lars & Söder, Mårten
(2008)
Människan som social varelse kategoriseras på många olika sätt, men detta bortser vi ofta ifrån när det gäller personer med funktionsnedsättning. Därför blir de just personer med funktionsnedsättning, utan kön, utan etnicitet, utan sexualitet, utan klasstillhörighet och så vidare.
Under senare år har begreppet intersektionalitet blivit allt vanligare, framförallt inom de forskningsinriktningar som sysslar med människor som uppfattas som marginaliserade och/eller underordnade. Begreppet söker fånga det samspel mellan olika dimensioner som man menar är nödvändigt för att på allvar förstå situationen för dessa grupper.
Forskningen om funktionshinder har hittills saknat ett sådant perspektiv, något som kan leda till att dess analyser och teorier blir endimensionella och svåra att tillämpa.
Den här antologin är ett första svenskt bidrag till införandet av ett intersektionellt perspektiv i forskningen om funktionshinder. I boken diskuteras hur funktionshinder samspelar med andra dimensioner som kön, klasstillhörighet, sexualitet och etnicitet. Boken ger också exempel på hur metodologiska perspektiv, som kritisk realism och konstruktivism, kan bidra till intersektionell forskning om funktionshinder.
Bara funktionshindrad? vänder sig främst till studenter och forskare inom vård-, beteende- och samhällsvetenskapliga discipliner.
Barn i familjer med alkohol- och narkotikaproblem: Omfattning och analys
Statens folkhälsoinstitut
(2008)
Statens folkhälsoinstitut har undersökt hur många barn i Sverige som växer upp med föräldrar som antingen riskkonsumerar eller missbrukar alkohol, eller som missbrukar narkotika. Resultaten av denna studie, tillsammans med en analys av dessa barns situation, kan återfinnas i denna rapport.
Ett barn som växer upp med en eller två missbrukande föräldrar kan man anta utsätts för stora känslomässiga påfrestningar. Trots detta har det saknats uppgifter om hur vanlig en sådan situation är och någon analys av hur dessa barns situation ser ut. Statens folkhälsoinstitut fick därför i januari 2008 i uppdrag av regeringen att kartlägga frågan.
Analysen har utförts som en systematisk genomgång av vetenskapliga studier, och presenterar en samlad diskussion av resultaten med förhoppningen att kunna erbjuda ett underlag för förebyggande insatser inom området.
Rapporten vänder sig i första hand till beslutsfattare och yrkesverksamma med ansvar för förebyggande arbete inom kommuner, landsting, staten och frivilliga organisationer.
Barnombud i psykiatrin – i vems intresse?
Östman, Margareta & Afzelius, Maria
(2008)
Basal hemsjukvård för äldre personer med långvariga vårdbehov : hur kan vården förbättras?
Törnkvist, L. & Wånell, S-E.
(2008)
Basal hemsjukvård för äldre personer med långvariga vårdbehov : hur kan vården förbättras?
Törnkvist, L. & Wånell, S-E.
(2008)
'Being appropriately unusual': a challenge for nurses in health-promoting conversations with families.
Benzein, E., Hagberg, M., & Saveman, B.
(2008)
This study describes the theoretical assumptions and the application for health-promoting conversations, as a communication tool for nurses when talking to patients and their families. The conversations can be used on a promotional, preventive and healing level when working with family-focused nursing. They are based on a multiverse, salutogenetic, relational and reflecting approach, and acknowledge each person's experience as equally valid, and focus on families' resources, and the relationship between the family and its environment. By posing reflective questions, reflection is made possible for both the family and the nurses. Family members are invited to tell their story, and they can listen to and learn from each other. Nurses are challenged to build a co-creating partnership with families in order to acknowledge them as experts on how to lead their lives and to use their own expert knowledge in order to facilitate new meanings to surface. In this way, family health can be enhanced.
Being appropriately unusual: a challenge for nurses in health-promoting conversations with families.
Benzein, E., Hagberg, M., Saveman. B.
(2008)
Being appropriately unusual: a challenge for nurses in health-promoting conversations with families.
Benzein, E., Hagberg, M., Saveman. B.
(2008)
Bringing birth-related paternal depression to the fore
Schumacher, M., Zubaran, C. & White, G.
(2008)
OBJECTIVES:
Maternal postpartum depression is a prevalent health disorder with important consequences to the family and child development. Research evidence demonstrates that fathers can also suffer from psychological distress in the postpartum period and that paternal depression has a detrimental effect on the child's behavioral and emotional development. This study aims to review the current literature available about birth-related paternal depression.
METHOD:
A literature search from 1980 to 2007 was conducted through Medline electronic database, using the following Mesh terms: postpartum, postnatal, depression, fathers and paternal. Studies on maternal postpartum depression that examined issues related to paternal depression were also selected.
RESULTS:
Understanding about paternal depressive disorders during the postnatal period has advanced considerably in the last decade. Various studies demonstrate that birth-related paternal depression is a significant problem and closely associated with maternal depressive symptoms. Children of depressive fathers are also at risk for emotional and behavioral problems.
CONCLUSIONS:
Men may suffer from psychological distress after childbirth and birth-related paternal depression is not a rare phenomenon. Since this disorder, also called 'paternal postpartum depression', presents potential deleterious effects for the child, an increased level of public health awareness and scientific interest is warranted. In addition, a more detailed assessment of fathers during the postnatal period is recommended, especially when their partners are also depressed, so that the condition will be promptly recognized and treated.
Caregiver Assessment
Feinberg, L. F.
(2008)
Caregiver strain in Parkinson's disease and the impact of disease duration
Lökk ,J.
(2008)
Abstract
AIM:
The task of managing care for patients with Parkinson's disease (PD) often falls upon a family member taking on the role as a caregiver (CG) implying a burden on these CGs. The aim of this study was to evaluate CG strain of PD patients with regarding different psychosocial domains and the influence of PD/CG duration of PD.
METHODS:
A cross-sectional telephone interview survey of 451 CGs randomly selected from the registry of the Swedish Parkinson's Disease Association. A structured questionnaire covering sociodemographic, psychosocial, and general CG factors, sleep and depression of the CG as well as issues of the patient's disease was used by 4 independent interviewers blinded to the study objective.
RESULTS:
Four hundred and four of 451 (90%) CGs responded with a mean age of 68.5 years with 62% females. The results were stratified in 3 groups with regard to disease duration of the PD patient, 0-4, 5-10, and >11 years, respectively. General health condition of the CGs was regarded satisfactory independent of disease duration. Insufficient sleep and disease related stress were considered to be prominent in 36% and 61%, respectively, being significantly more prominent in the group with the longest disease duration. Decreased mood was reported in 31% with no difference between groups. More than 30% of CGs also experienced daily problems with tiredness and sleep disturbance; 27% hypertension; 17% muscle strain, headache and fatigue; and 14% gastro-intestinal problems most items regardless of disease duration. The most troublesome symptoms of the patients to the CGs were reported to be the motor dysfunction (58%). More than half experienced little or no understanding of their situation.
CONCLUSION:
CGs are afflicted with strain and burden in many psychosocial and somatic domains despite satisfactory general wellbeing independent of disease duration. The longer disease duration, and, accordingly CG duration, the more impact on certain domains of CG burden, however, with little understanding of their situation. These findings should be given greater consideration when organizing and planning for PD care in the health care system and the community.
Caregiving - predicting at-risk status
Chappell, N. L. & Dujela, C.
(2008)
Caregiving Burden, Community Services, and Quality of Life of Primary Caregivers of Frail Elderly Persons
Iecovich, E.
(2008)
Challenging Childhoods: Young people’s accounts of ‘getting by’ in families with substance use problems
Backett-Milburn, K., Wilson, S., Bancroft. A., & Cunningham-Burley, S.
(2008)
Concern is increasing about children growing up in families where there are substance use problems but relatively little is known about the perspectives of the children themselves. This article reports on a qualitative study with young people who grew up in such families, exploring their accounts of their daily lives at home, school and leisure. The study focuses on the everyday interactions, practices and processes the young people felt helped them to 'get by' in their challenging childhoods, showing how the protective factors thought to promote 'resilience' were seldom in place for them unconditionally and without associated costs.
Characteristics and quality of life of patients who choose home care at the end of life.
Ahlner-Elmqvist, M., Jordhøy MS, Bjordal, K., Jannert, M., Kaasa, S.
(2008)
Characteristics of Drug-Abusing Women With Children in Residential Treatment: A Preliminary Evaluation of Program Retention and Treatment Completion.
Simons L.
(2008)
An ex post facto study was conducted to investigate treatment outcomes for 80 women and 168 children admitted into a residential substance-abuse treatment program. The results indicated childhood emotional neglect is a barrier for remaining in and completing treatment for African-American women with comorbid psychological disorders but not for those with crack cocaine dependent disorders. African-American women with comorbid psychological disorders were also three times more likely to dropout of treatment. In addition, there were relatively few differences for between drug-exposed and nonexposed children. However, the results indicated that children of substance-abusing women who completed treatment were more likely to have behavioral problems, to receive early intervention services, and to have mothers as legal guardians by the end of treatment. Implications for gender-specific interventions for African-American women and their children in residential treatment are discussed.
Children as ‘Being and Becomings’: Children, Childhood and Temporality
Uprichard, E.
(2008)
Notions of 'being' and 'becoming' are intrinsic to childhood research. Whilst the 'being' child is seen as a social actor actively constructing 'childhood', the 'becoming' child is seen as an 'adult in the making', lacking competencies of the 'adult' that he or she will 'become'. However, I argue that both approaches are in themselves problematic. Instead, theorising children as 'being and becomings' not only addresses the temporality of childhood that children themselves voice, but presents a conceptually realistic construction suitable to both childhood researchers and practitioners.
Children of alcoholics in Spain: From risk to pathology: Results from the ALFIL program
Díaz R, Gual A, García M, Arnau J, Pascual F, Cañuelo B, et al.
(2008)
OBJECTIVE:
To identify the possible risk factors and negative outcomes associated with parental alcoholism. A secondary aim was to determine the influence of the family density of alcoholism on children of alcoholics' (COAs) psychological functioning.
METHOD:
A multisite epidemiological study was conducted in 8 Spanish cities, recruiting a total sample of 371 COAs (whose parents were in contact with alcohol treatment centers and accepted to participate in this study) and 147 controls (from schools in the same localities as COAs). Both groups were 6-17 years old and received a comprehensive evaluation of mental disorders (no symptoms, subclinical symptoms or clinical diagnosis for each disorder; according to DSM-IV criteria); alcohol and other substance use (none, occasional, regular and risky consumption); school achievement (low, middle and high) and other academic performance indicators (WISC-R Information and Arithmetic subtests, school support activities and failed subjects and courses). Lastly, several cognitive functions were measured by the WISC-R Similarities, Block Design and Digit Symbol subtests, the Toulouse-Piéron test and the Stroop test. Logistic regression methods were used to compare both groups and a linear regression model was used to determine the influence of the family density of alcoholism. The following confounding variables were controlled for: age, gender, socio-economic status and family cohesion.
RESULTS:
Children of alcoholics' were twice as likely as controls to present subclinical symptoms and four times more likely than controls to have a definite diagnosis of any mental disorder. More specifically, COAs had a significantly higher risk than controls of attention deficit disorder/hyperactivity, depression, phobias, enuresis and tics. COAs also tended to have more symptoms of generalized anxiety disorder. COAs had worse results on all the cognitive tests used and their risk of low school achievement was nine times higher than that of controls. Family density of alcoholism was significantly related to several psychiatric disorders and to low academic and cognitive performance in these children.
CONCLUSION:
Children of alcoholics' whose parents are in contact with treatment centers in Spain constitute a target group for selective prevention, as they have a higher risk of different negative outcomes, which mainly include attention disorders and other cognitive deficits, depression and anxiety.
Children of alcoholics in Spain: From risk to pathology: Results from the ALFIL program
Díaz R, Gual A, García M, Arnau J, Pascual F, Cañuelo B, et al.
(2008)
OBJECTIVE:
To identify the possible risk factors and negative outcomes associated with parental alcoholism. A secondary aim was to determine the influence of the family density of alcoholism on children of alcoholics' (COAs) psychological functioning.
METHOD:
A multisite epidemiological study was conducted in 8 Spanish cities, recruiting a total sample of 371 COAs (whose parents were in contact with alcohol treatment centers and accepted to participate in this study) and 147 controls (from schools in the same localities as COAs). Both groups were 6-17 years old and received a comprehensive evaluation of mental disorders (no symptoms, subclinical symptoms or clinical diagnosis for each disorder; according to DSM-IV criteria); alcohol and other substance use (none, occasional, regular and risky consumption); school achievement (low, middle and high) and other academic performance indicators (WISC-R Information and Arithmetic subtests, school support activities and failed subjects and courses). Lastly, several cognitive functions were measured by the WISC-R Similarities, Block Design and Digit Symbol subtests, the Toulouse-Piéron test and the Stroop test. Logistic regression methods were used to compare both groups and a linear regression model was used to determine the influence of the family density of alcoholism. The following confounding variables were controlled for: age, gender, socio-economic status and family cohesion.
RESULTS:
Children of alcoholics' were twice as likely as controls to present subclinical symptoms and four times more likely than controls to have a definite diagnosis of any mental disorder. More specifically, COAs had a significantly higher risk than controls of attention deficit disorder/hyperactivity, depression, phobias, enuresis and tics. COAs also tended to have more symptoms of generalized anxiety disorder. COAs had worse results on all the cognitive tests used and their risk of low school achievement was nine times higher than that of controls. Family density of alcoholism was significantly related to several psychiatric disorders and to low academic and cognitive performance in these children.
CONCLUSION:
Children of alcoholics' whose parents are in contact with treatment centers in Spain constitute a target group for selective prevention, as they have a higher risk of different negative outcomes, which mainly include attention disorders and other cognitive deficits, depression and anxiety.
Children of Depressed Mothers 1 Year After the Initiation of Maternal Treatment: Findings From the STAR*D-Child Study
Pilowsky D, Wickramaratne P, Talati A, Tang M, Hughes C, Garber J, et al.
(2008)
Objective: Maternal depression is a consistent and well-replicated risk factor for child psychopathology. The authors examined the changes in psychiatric symptoms and global functioning in children of depressed women 1 year following the initiation of treatment for maternal major depressive disorder. Method: Participants were 1) 151 women with maternal major depression who were enrolled in the Sequenced Treatment Alternatives to Relieve Depression (STAR*D) study and 2) their eligible offspring who, along with the mother, participated in the child STAR*D (STAR*D-Child) study (mother-child pairs: N=151). The STAR*D study was a multisite study designed to determine the comparative effectiveness and acceptability of various treatment options for adult outpatients with nonpsychotic major depressive disorder. The STAR*D-Child study examined children of depressed women at baseline and involved periodic follow-ups for 1 year after the initiation of treatment for maternal major depressive disorder to ascertain the following data: 1) whether changes in children's psychiatric symptoms were associated with changes in the severity of maternal depression and 2) whether outcomes differed among the offspring of women who did and did not remit (mother-child pairs with follow-up data: N=123). Children's psychiatric symptoms in the STAR*D-Child study were assessed using the Schedule for Affective Disorders and Schizophrenia for School-Age Children—Present and Lifetime Version (K-SADS-PL), and maternal depression severity in the STAR*D study was assessed by an independent clinician, using the 17-item Hamilton Depression Rating Scale (HAM-D). Results: During the year following the initiation of treatment, maternal depression severity and children's psychiatric symptoms continued to decrease over time. Decreases in the number of children's psychiatric symptoms were significantly associated with decreases in maternal depression severity. When children's outcomes were examined separately, a statistically significant decrease in symptoms was evident in the offspring of women who remitted early (i.e., within the first 3 months after the initiation of treatment for maternal depression) or late (i.e., over the 1-year follow-up interval) but not in the offspring of nonremitting women. Conclusions: Continued efforts to treat maternal depression until remission is achieved are associated with decreased psychiatric symptoms and improved functioning in the offspring.
Co-constructed talk in the conversations of people with dysarthria and aphasia
Bloch, S., & Beeke, S.
(2008)
This paper uses the methodology of conversation analysis (CA) to examine the practice of co-constructed turn and utterance production in impaired communication. An investigation of the conversations between two family dyads, featuring one person with dysarthric speech and one with aphasic language, reveals one way in which single turns and utterances are produced through the collaborative activities of two people in interaction. Such a practice is shown to operate without problems for the participants or the need for explicit acceptance by the speakers. It is proposed that co-construction in disordered speech and language is one way in which communicative competence is accomplished. By drawing attention to similarities in the consequences of dysarthria and aphasia in everyday interaction, it is suggested that researchers and clinicians might profitably look across disorder-specific boundaries.
Öppna jämförelser 2008 : vård och omsorg om äldre
Åhs, U.
(2008)
"Varför frågar ingen hur jag mår?".
Spjuth, E.
(2004)
A systematic review of action imitation in autism spectrum disorder.
Williams J, Whiten A, Singh T.
(2004)
Imitative deficits have been associated with autistic spectrum disorder (ASD) for many years, most recently through more robust methodologies. A fresh, systematic review of the significance, characteristics, and underlying mechanism of the association is therefore warranted. From 121 candidates, we focused on 21 well-controlled studies involving 281 cases of ASD. Overall, children with ASD performed worse on imitative tasks (Combined Logit p value < .00005). The emerging picture is of delayed development in imitation, implicating a deficit in mapping neural codings for actions between sensory and motor modalities, rather than in motivation or executive function. We hypothesise that ASD is characterised by abnormal development of these mappings, such that they are biased towards object-oriented tasks at the expense of those required for action imitation per se.
Children´s assessment of participation and enjoyment & Preferences for activities of children
King G, King S, Rosenbaum P, Kertoy M, Law M, Hurley P, et al.
(2004)
The psychometric properties of assessments must be established for specific populations. The psychometric properties of the Children's Assessment of Participation and Enjoyment/Preference for Activities of Children have been studied only in a sample of children with physical disability. We conducted a study to determine the appropriateness of drawing inferences from this assessment for children with high-functioning autism (HFA). The content validity and test–retest reliability (r > .7) were both found to be adequate for this population. Parents' agreement with most of their children's self-ratings on this assessment provided an estimate of interrater reliability. We also ascertained the feasibility of gathering recreational participation information from children with HFA and found that adaptations to facilitate the self-completion of the tool should be made available. The study findings support the use of this tool to assess recreational participation among children with HFA.
Emanuel Miller lecture: Confusions and controversies about Asperger syndrome
Frith, Uta
(2004)
BACKGROUND:
Hans Asperger drew attention to individuals who show the core symptoms of autism in the presence of high verbal intelligence.
METHODS:
A review of the literature explores current issues concerning the diagnosis and nature of Asperger syndrome.
RESULTS:
The behavioural and neurophysiological evidence to date suggests that Asperger syndrome is a variant of autism typically occurring in high-functioning individuals, and not a separate disorder. One of the problems of diagnosis is that the typical impairment of social communication may be difficult to identify in early childhood, and can be camouflaged in adulthood by compensatory learning. The range and nature of the social impairments in Asperger syndrome are still in need of investigation, but appear to be less severe than in autism. Experimental evidence suggests that individuals with Asperger syndrome may lack an intuitive theory of mind (mentalising), but may be able to acquire an explicit theory of mind. Brain imaging studies pinpoint a network that links medial prefrontal and temporal cortex as the neural substrate of intuitive mentalising. This network shows reduced activation and poor connectivity in Asperger syndrome. While some individuals with Asperger syndrome have written eloquently about their lives, their ability to talk about their own emotions appears to be impaired (alexithymia). This impairment may be linked to depression and anxiety, which is common in adulthood. Little is as yet known about the often considerable cognitive strengths in Asperger syndrome, or about the difficulties observed in higher-level executive skills.
CONCLUSIONS:
Studies are needed that define the developmental course of the disorder and the nature of the strengths and weaknesses in both social and non-social domains. This requires more sensitive assessment instruments than are currently available. Questions about the prevalence of Asperger syndrome, about associated and secondary features, and about optimal education and management, urgently call for such studies.
Facilitators and barriers for co-ordinated multi-agency services
Sloper, P.
(2004)
Background Greater collaboration between agencies and the need to improve interagency working is a key policy priority. The lack of co-ordinated multi-agency working in children's services has been highlighted in many research studies. Evidence on the facilitators of and barriers to such working and the outcomes for children and families of co-ordinated services is important to inform local developments.
Methods Literature on multi-agency working was reviewed as part of the evidence gathering to inform the Children's National Service Framework. Searches were mainly concentrated on existing reviews, plus recent studies which included children's services and were not covered by the reviews obtained.
Results There is little evidence on the effectiveness of multi-agency working itself or of different models of such working in producing improved outcomes for children and families. However, reviews of evidence on multi-agency working provide consistent findings on facilitators and barriers, including: clear aims, roles and responsibilities and timetables that are agreed between partners; a multi-agency steering group, commitment at all levels of the organizations involved and good systems of communication and information sharing, including IT systems, are central; support and training for staff in new ways of working is needed. There is some evidence that interprofessional programmes of continuing education can help to remove barriers to joint working.
Conclusions Existing research provides useful information for organizations developing multi-agency services. However, there is a need for methodologically sound research which investigates the outcomes of different models of multi-agency working in services for children, includes assessment of cost effectiveness, and explores the ways in which the factors identified as facilitating multi-agency working relate to outcomes.
Lived experiences of being a father of an adult child with Schizofrenia
Nyström M, Svensson H.
(2004)
The aim of this study is to analyze and describe lived experiences of being a father of an adult child with schizophrenia. Interpretations of interviews with seven Swedish fathers of sons or daughters with schizophrenia revealed a pattern of gradually changing existential consequences. After an initial period of shock when receiving the diagnosis, a long struggle to regain control follows. The findings are presented in a structure based on eight different aspects of this struggle, which seems to be characterized by a balance between grieving and adaptation. An important conclusion is that the fathers' life-world must be attended to in professional family interventions.
Living with Schizophrenia from the perspective of outpatients and their parents
Foldemo, Annica
(2004)
Akademisk avhandling
The aim of this thesis was to investigate how outpatients with schizophrenia experienced their situation in terms of need and quality of life. A further aim was to investigate how their parents experienced the need of their daughter or son and how it influenced their own life.
Med rätt att bestämma själv? – ”exit”, ”voice” och personlig assistans
Hugemark, Agneta
(2004)
This study focuses on the influence a user may have over his or her welfare service, personal assistance.
A county, an assistance firm and a user cooperative are compared with the thesis that the organisation
that surrounds the users shapes the possibilities the user have to influence his or her personal
assistance. There are questions that try to answer if there are outspoken social goals within each
organisation. Questions regarding influence of the user when she och he is choosing the assistans
provider and the users possibility to influence and his or her power to decide who and when anyone
works as an assistant are asked.
Motivation for Money and Care that Adult Children Provide for Parents: Evidence from “Point-Blank” Survey Questions. Working Paper 2004-17
Cox, D. and B. Soldo
(2004)
When adult children provide care for their aging parents, they often do so at great expense to themselves incurring psychic, monetary, emotional, and even physical costs, in conjunction with care that is labor intensive and, at the extreme, unrelenting. While the nature of parent care and the profile of care giving children are well described in the literatures of the social sciences, we still lack insight into why adult children undertake parent care without compensation or compulsion. In this paper, we adopt a novel, direct question approach using newly available data from a special module fielded in the 2000 Health and Retirement Study that included questions on motivations for, and concerns with, the provision of familial assistance. Transfers are not always provided free of pressure from other family members, for example, and familial norms of obligations and traditions appear to matter for many respondents. These findings suggest that the standard set of economic considerations—utility interdependence, budget constraints, exchange, and the like—are insufficient for a complete understanding of private transfer behavior. Though one must always be skeptical about reading too much into what people say about why they do the things they do (or think they will do) we nonetheless conclude that "point-blank" questions offer, at the very least, a worthwhile complement to the more conventional methods for unraveling motivations for private, intergenerational transfers.
Paternal postpartum depression, its relationship to maternal postpartum depression, and implications for family health
Goodman, J.
(2004)
BACKGROUND:
Much attention has been paid to the problem of postpartum depression in women. However, there is some indication that men also experience depression after the birth of a child, and that paternal depression is linked to maternal depression.
AIMS:
The purpose of this integrative review was to examine current knowledge about postpartum depression in fathers. Specific aims were (1) to examine the incidence of paternal depression in the first year after the birth of a child, (2) to identify the characteristics and predictors of paternal postpartum depression, (3) to describe the relationship between maternal and paternal postpartum depression, and (4) to discuss the influence of paternal depression on the family and infant.
METHODS:
A literature search from 1980 to 2002 was carried out using the CINAHL, PsychInfo, and Medline electronic databases. Twenty research studies were identified that included incidence rates of paternal depression during the first year postpartum. These were further examined and synthesized regarding onset, severity, duration, and predictors of paternal depressive symptoms, and for information about the relationship between maternal and paternal depression.
FINDINGS:
During the first postpartum year, the incidence of paternal depression ranged from 1.2% to 25.5% in community samples, and from 24% to 50% among men whose partners were experiencing postpartum depression. Maternal depression was identified as the strongest predictor of paternal depression during the postpartum period. The implications of parental depression for family health were discussed.
CONCLUSIONS:
Postpartum depression in men is a significant problem. The strong correlation of paternal postpartum depression with maternal postpartum depression has important implications for family health and well-being. Consideration of postpartum depression in fathers as well as mothers, and consideration of co-occurrence of depression in couples, is an important next step in research and practice involving childbearing families.
The impact of hippotherapy on grieving children
Glazer, H.R., Clark, M.D. & Stein, D.S.
(2004)
ABSTRACT This article looks at the use of therapeutic riding, or hippotherapy, with children who are mourning the death of a family member. Therapeutic riding is the summer program that is part of the Evergreen support group for grieving school-age children and their families. A qualitative study of the impact of the riding program is presented. The research question was whether the children, parents, and adult volunteer would view the program as encouraging the processing of grief and person development. The following themes in perceived outcomes of the program were identified: confidence, trust, and communication skills. The parents and guardians all described the therapeutic riding as a positive experience. They noted an increase in overall communication, including talk about the deceased, as well as an increase in the child's self-confidence and self-esteem. Success with the horses appeared to be important to these children, who expressed pride and joy in their accomplishments.
Training care givers of stroke patients: economic evaluation.
Patel A, Knapp M, Evans A, Perez I, Kalra L.
(2004)
Background Training care givers reduces their burden and improves psychosocial outcomes in care givers and patients at one year. However, the cost effectiveness of this approach has not been investigated.
Objective To evaluate the cost effectiveness of caregiver training by examining health and social care costs, informal care costs, and quality adjusted life years in care givers.
Design A single, blind, randomised controlled trial.
Setting Stroke rehabilitation unit.
Subjects 300 stroke patients and their care givers.
Interventions Caregiver training in basic nursing and facilitation of personal care techniques compared with no caregiver training.
Main outcome measures Health and social care costs, informal care costs, and quality adjusted life years in care givers over one year after stroke.
Results Total health and social care costs over one year for patients whose care givers received training were significantly lower (mean difference -£4043 ($7249; €, 95% confidence interval -£6544 to -£1595). Inclusion of informal care costs, which were similar between the two groups, did not alter this conclusion. The cost difference was largely due to differences in length of hospital stay. The EQ-5D did not detect changes in quality adjusted life years in care givers.
Conclusion Compared with no training, caregiver training during rehabilitation of patients reduced costs of care while improving overall quality of life in care givers at one year.
Validation of the CHORES: A measure of school-aged children´s participation in household tasks
Dunn L.
(2004)
The CHORES (Children Helping Out: Responsibilities, Expectations, and Supports) is a clinical and research tool that measures school-aged children's participation in household tasks. Separate performance and assistance scores enable examination of changes in children's responsibilities for household tasks as they mature and the work of families to promote their participation. The Self-Care and Family-Care subscales afford study of cultural aspects of household tasks that may influence children's participation and opportunities for learning. Thirty-two parents from diverse backgrounds participated in the first part of the study. Twenty-one of these parents participated in the test–retest study. The sample was culturally diverse and included parents of 6- to 11-year-old children with and without disabilities who have average or above intellect. Results from the psychometric analyses show that the CHORES has strong reliability and validity. The variance in children's task performance and overall levels of assistance supports the utility of this measure for capturing differences among children in the extent of their participation. Stability of parents' responses over time is strong both for performance (ICC, r=0.88) and for assistance (ICC, r=0.92) scores. The validity of the CHORES is supported by the parents' judgments of the importance of involving their children in household tasks. The CHORES is easy to complete, considers the parent's perspective, and provides a way to collect information on children's participation in household tasks. The CHORES provides a mechanism to learn more about factors that influence children's participation in household tasks, changes in their responsibilities over time, and outcomes from their participation in these tasks.
Women in the Middle. Their Parent-care Years
Brody, E.
(2004)
Women in the Middlewas so-named because daughters, who are the main caregivers to elderly disabled parents, most often in their middle years, are caught in the middle of multiple competing demands on their time and energy. Since the first edition, women's responsibilities and the pressures they have experienced have increased and intensified. Dr. Brody revisits this phenomenon in this new, updated edition of her ground-breaking work.
Women in the Middle, 2/e, describes and discusses the caregiving women's subjective feelings, experiences, and problems, and the effects on their mental and physical well-being, life styles, family relationships, and vocational activities. These case studies and narratives present an insider's view of the harsh and sometimes joyful experience of caregiving.
Special attention is given to the changing face of social, economic, and environmental conditions, as well as the diversity of the caregiver, in which caregiving, in which caregiving takes place.
"Depression Among Recipients of Informal Care: The Effects of Reciprocity, Respect, and Adequacy of Support."
Wolff, J. F. and Agree, E.M.
(2004)
Abstract
OBJECTIVES:
The objective of this work was to examine the relationship of perceived quality of care to depression among recipients of informal long-term care.
METHODS:
eneralized estimating equations were used to generate population-average logistic regression models of prevalent depression, using a sample of 420 disabled community-dwelling women aged 65 or older receiving informal care obtained from the Women's Health and Aging Study Caregiving Survey.
RESULTS:
Findings confirm a substantial prevalence of depression among older women with disabilities and support the hypothesis that perceived reciprocity and respect afforded by one's primary caregiver as well as adequacy of instrumental support all were associated with a lower likelihood of being categorized as depressed, even after controlling for sociodemographic, health, and psychosocial characteristics that are known to be related to depression.
DISCUSSION:
Perceived quality of informal care arrangements has a bearing on the psychological health of care recipients. Individuals in more reciprocal relationships and in relationships where they felt respected and valued were less likely to be depressed than their counterparts.
A constructionist discourse on resilience
Ungar, M.
(2004)
An ecological approach to the study of resilience, informed by Systems Theory and emphasizing predictable relationships between risk and protective factors, circular causality, and transactional processes, is inadequate to account for the diversity of people's experiences of resilience. In contrast, a constructionist interpretation of resilience reflects a postmodern understanding of the construct that better accounts for cultural and contextual differences in how resilience is expressed by individuals, families, and communities. Research supporting this approach has demonstrated a nonsystemic, nonhierarchical relationship between risk and protective factors that is characteristically chaotic, complex, relative, and contextual. This article critically reviews research findings that support an ecological perspective and explores the emerging literature that informs a constructionist approach to the study of resilience. It will show that an alternate constructionist discourse on resilience greatly enhances our understanding of resilience-related phenomena and our approach to interventions with at-risk youth populations.
A randomized trial to evaluate an education programme for patients and carers after stroke
Smith J, Forster A, Young J.
(2004)
Objectives: To evaluate the effectiveness of an education programme for patients and carers recovering from stroke.
Design: Randomized controlled trial.
Subjects and setting: One hundred and seventy patients admitted to a stroke rehabilitation unit and 97 carers of these patients.
Interventions: The intervention group received a specifically designed stroke information manual and were invited to attend education meetings every two weeks with members of their multidisciplinary team. The control group received usual practice.
Measures: Primary outcome was knowledge of stroke and stroke services. Secondary outcomes were handicap (London Handicap Scale), physical function (Barthel Index), social function (Frenchay Activities Index), mood (Hospital Anxiety and Depression Scale) and satisfaction (Pound Scale). Carer mood was measured by the General Health Questionnaire-28.
Results: There was no statistical evidence for a treatment effect on knowledge but there were trends that favoured the intervention. The education programme was associated with a significantly greater reduction in patient anxiety score at both three months (p=0.034) and six months (p=0.021) and consequently fewer 'cases' (Hospital Anxiety and Depression Scale anxiety subscale score ≥ 11). There were no other significant statistical differences between the patient or carer groups for other outcomes, although there were trends in favour of the education programme.
Conclusion: An education programme delivered within a stroke unit did not result in improved knowledge about stroke and stroke services but there was a significant reduction in patient anxiety at six months post stroke onset.
A study of the family burden of 150 family members of schizophrenic patients
Lowyck B, De Hert M, Peeters E, Wampers M, Gilis P, Peuskens J.
(2004)
Investigation into the family burden (FB) of schizophrenic patients has recently risen sharply. Nevertheless, to date there has been little consensus as to what factors influence the FB. The purpose of this study is to acquire a greater insight into the variables that influence the FB. The FB was measured with the interview for the family burden (Kluiter H, Kramer JJAM, Wiersma D, et al. Interview voor de belasting van de familie 1997 [Interview for the burden on the family]. Department Sociale Psychiatric. Groningen: Rijksuniversiteit). One hundred and fifty family members (parents/partners) of schizophrenic patients participated in the study. The results of our study show (1) that family members experience burden both on a practical and an emotional level, (2) a highly significant correlation between the amount of symptomatic behaviour of the patient and FB, (3) that parents had taken on more tasks, had contributed more financially and had experienced a tenser atmosphere at home than partners did and (4) that family members of patients who have been treated for less than 1 year worry more about the other members of their family than family members of patients who have been receiving treatment for more than 1 year. Family members of schizophrenic patients experience burden on a practical, financial and emotional level and the extent of the burden is closely linked to the amount of symptomatic behaviour of the patient. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)
AAC and literacy
Hetzroni, O. E.
(2004)
Purpose: To review current research on the use of augmentative and alternative communication (AAC) for prompting literacy in children with special educational needs. Method: Research studies relevant to emergent literacy and AAC use are reviewed. Studies focused on acquisition of literacy across various populations of children with special needs are reviewed. Results: Existing literature suggests that AAC may provide strategies and systems to compensate for impairments and disabilities of individuals with severe communication disorders. Conclusion: AAC may support literacy learning in children with special educational needs.
According to need? : Predicting use of formal and informal care in a Swedish urban elderly population
Larsson, K.
(2004)
Avhandling
This dissertation studies factors that predict use of public eldercare, informal care, and purchase of private services in relation to an individual's needs, social network characteristics, and sociodemographic factors. A further purpose is to examine whether use of public eldercare is correlated to receipt of informal care and purchase of private services in the Swedish welfare state.The dissertation is based on the Kungsholmen Study, a population-based longitudinal study. Studies I–III used cross-sectional data from community-dwelling people aged 81-100 and examined (I) gender, (II) marital and parental status, and (III) dementia and depressive symptoms as predictors of use of home help. Study IV analyzed factors related to moving into institutional care and receipt of home help from 1994/96 to 2000.The majority of support provided to elders living in the community comes from informal sources, even among people living alone. There was considerable overlap between home help and informal care. When all sources of care were considered, childless individuals had comparatively lower odds of receiving care. Factors predicting use of public eldercare and informal care differed depending on whether or not elders coresided. No gender differences in use of formal and informal care were found when controlling for household composition. Living alone, dementia, need of help with household chores, and walking limitations increased the likelihood of using public eldercare. Coresidence, informal care from outside the household, and use of private services decreased the likelihood. Depressive symptoms increased the likelihood of receiving home help and institutionalization when using longitudinal data, but not in the cross-sectional studies. Educational level was of importance and interacted with several factors; persons with higher levels of education were advantaged. Very few people moved into institutional care without previously having received home help services. Essentially the same factors that predicted receipt of home help services also predicted institutionalization.
Adolescent mothers: support needs, resources, and support-education interventions
LETOURNEAU, N. L., STEWART, M. J. & BARNFATHER, A. K.
(2004)
Adolescent mothers are prone to live in poor conditions, lack adequate financial resources, suffer high stress, encounter family instability, and have limited educational opportunities. These factors contribute to inadequate parent-child interactions and diminished infant development. Social support can promote successful adaptation for adolescent mothers and their children. This review article describes the support needs and challenges faced by adolescent parents and their children, the support resources available to and accessed by adolescent parents, and existing support-education intervention studies, to provide directions for future research. Relevant research published between January 1982 and February 2003 was obtained from online database indices and retrieved article bibliographies. Frequently encountered problems included small sample sizes and attrition, lack of suitable comparison groups, and measurement inconsistencies. When planning support-education interventions, content, duration, intensity, mode, level, intervention agents, and targets should be considered. Future research can address these challenges.
Aging with lifelong disability: Policy, program and practice issues for professionals
Bigby, Christine
(2004)
'A comprehensive text addressing this issue is welcome and this book addresses service provision for older people with disabilities from a UK, USA and Australian perspective. The book would serve as a useful reference book for Health and Social Service personnel, particularly students, from a variety of disciplines working with older adults, in the learning disability field or with older people who have lifelong physical disabilities. A particular strength is the inclusion of case vignettes that describe individual older clients with lifelong disabilities; interesting questions are posed for discussion which relate to the subject matter in each of the five sections. The vignettes are interesting and enjoyable to read and would be useful for group work/teaching purposes.' - International Journal of Geriatric Psychiatry 'This book is most welcome with an extensive review of the research and service development in the United States, the United Kingdom and Australia with illustrative vignettes and relevant questions following the first four parts of the book. Suggested literature is also part of each chapter. All in all, a book recommended for both practitioners, researchers and policy makers involved with persons with life long disability as they age.' - International Journal of Adolescent Medical Health 'In all, this book is an essential addition to the library of service provider organisations, policymakers, researchers, and families and all who wish to share in ensuring the well-being and quality lifestyles of this growing and emerging group of citizens. I see this book as a seminal text in this area.' - Marie Knox (School of Humanities and Human Services, Queensland University of Technology, Brisbane) in Intellectual Disability Australasia 'This book makes a commendable contribution in uniting thinking and strategic planning, and also through providing empirical evidence to illustrate ways forward that have meaning for older people with disabilities, their families and front-line professionals.' - from the Foreword by Gordon Grant Based on the author's 18 years' research experience and social work practice expertise, this pioneering guide provides up to date specialist knowledge about ageing with a disability in the context of the more mainstream knowledge about ageing processes. Christine Bigby uses the concept of 'successful ageing' as a framework in which to consider the issues and practicalities for older people with a lifelong disability. Bigby presents strategies for the various challenges involved in the physiological, psychological and sociological aspects of ageing and proposes an integrated framework of service development and policy directions for the implementation of these strategies. Particular focus is given to lifestyle planning, encompassing subjects such as daily activity and leisure, housing and support, advocacy, case management and health. Consideration is also given to working with older parental carers of adults with a lifelong disability to support preparation and planning for the transition from parental care.
Alcohol-related disorders in first and second generation immigrants in Sweden
Hjern A, Allebeck, P
(2004)
An Alternative Approach for the Analyses and Interpretation of Attachment Sort Items
KIRKLAND, J., BIMLER, D., DRAWNEEK, A., MCKIM, M. & SCHOLMERICH, A.
(2004)
Attachment Q‐Sort (AQS) is a tool for quantifying observations about toddler/caregiver relationships. Previous studies have applied factor analysis to the full 90 AQS item set to explore the structure underlying them. Here we explore that structure by applying multidimensional scaling (MDS) to judgements of inter‐item similarity. AQS items are arranged in the MDS solution along three easily interpretable axes: a model that is compatible with but more parsimonious than factor analysis solutions. This geometrical approach suggests ways to modify the AQS—primarily a research tool—to make it more practical for clinical applications. Sets of AQS data are represented and interpreted in the three‐dimensional model as vectors. Summaries at a finer‐grained level are obtained by finding points in the model where variability across datasets is greatest. We report re‐analyses of archival (published) data, and also data collected with streamlined procedures more suitable in the field. Although not reported here, collection and analysis can both be performed online via a website. The general methodology is not restricted to the current application of toddler attachment.
An exploration looking at the impact of domiciliary and day hospital delivery of stroke rehabilitation on informal carers
Low JT, Roderick P, Payne S.
(2004)
OBJECTIVES:
To explore the impact of two methods of post-hospital stroke rehabilitation on both carers' perceptions of the health services offered and their quality of life.
SETTING:
East Dorset Health Authority.
SUBJECTS:
Forty-six informal carers were recruited from a sample of 106, initially identified from stroke patients participating in a larger randomized controlled trial.
DESIGN:
Qualitative methods.
METHODS:
Semi-structured interviews were used at baseline and six months to explore carers' perception of a good therapy, the advantages and disadvantages of the different services and their fulfilment with the services. In-depth thematic analysis was carried out to explore the impact of the two different methods of service delivery on carers' quality of life.
RESULTS:
Day hospitals provided carers with respite opportunities, whilst domiciliary stroke teams provided carers with better educational opportunities to be involved in therapy. No qualitative difference was found in the impact that the different services had on carers' quality of life, which were influenced by factors such as the degree of disruption that caring had on their lives, the loss of a shared life and the availability of social support. Ultimately, carers saw the services as providing benefit for survivors and not themselves.
CONCLUSIONS:
Domiciliary stroke teams provided informal stroke carers with skills that could help improve postdischarge stroke rehabilitation amongst stroke survivors. Informal carers also benefited from the respite elements of day hospital. A mixed model using both domiciliary care and day hospital care, could provide carers with the benefits of education, convenience and respite.
Anhörigomsorg : Av kärlek eller tvång?
Szebehely, M.
(2004)
Anhörigomsorg : Av kärlek eller tvång?
Szebehely, M.
(2004)
Anhörigomsorg : Omsorg om anhöriga
Johansson, L., & Nyberg, G.
(2004)
Anhörigvårdens olika ansikten : Tema : Nordens äldreomsorger
Omsäter, M.
(2004)
Att fördela bistånd. Om handläggningsprocessen inom äldreomsorgen
Lindelöf, M. and E. Rönnbäck
(2004)
The aim of this dissertation is to illustrate the manner in which assistance is distributed to the elderly according to the social services law in Sweden. It will focus on the processing officers/"street-level bureaucrats" who have been assigned, based on their profession, the task of assessing and deciding about the distributing of assistance. Central issues include the manner in which process officers go about their assignement and how their actual performance appears in comparision with the prescribed course of action. The dissertation´s starting pionts are in part, the legal regulations in the form of the social service law´s material and procedural rules, and in part the role as street-level bureaucrat and the construction of the client. The data which forms the basis for the conclusions of the dissertation consists of four studies conducted during the period 1995-2001. The first investigation - The Sundsvall study - is explorative and gives a first insight into how the process officers act and document the processing of a case. The process officers study is a national investigation with process officers from 27 municipalities. This second study focuses on the various ways to organise the handling process, and how these may influence the finding for assistance. The documentation study is also a national investigation of 29 municipalities. In this third study the written documentation of the case handling process is primarily exposed. Focus groups comprise the final sorce of data in which a group of processors in tree municipalities discuss their work. The process officers in the focus group describe several usual situations. With support from the various investigations, a picture appears which does not agree with prescribed course of action according to the legislation. What appears instead is a pattern of action which probably already existed before we began this work and which likely continues. This pattern of action has as we have established two faces, one of which constitutes an informal process where the actual construction of the "help-seeker" take place. Whitin the frame for this aspect, the so-called "service catalouge" has a decisive meaning, which in it´s own way is directed towards satisfying primarely physical and medical needs. The other "face" displays the formalised expresson of the informal process. This formal expression does not reveal all that is going on, only chosen elements. The action that we have found are institutionalized as an officially sanctioned institution since the practice is widely accepted and legitimized. The public intstitution is therefore built upon a pattern of action that consists both of formal rule, but primarily standards and routines which in many regards occur outside the formal rules. The consequences of a pattern of action that has been institutionalized and legitimized affects those seeking help who do not receive the individual assessment that they have a right to according to the law.
Att möta flyktingar
Angel, B., & Hjern , A.
(2004)
Boken ger grundläggande kunskaper om flyktingars livsvillkor i ursprungslandet och i exilen. Den tar upp upplevda traumatiska händelser som politisk förföljelse, förtryck, fängelse, krig och allvarliga förluster.
Mötet mellan flyktingen och Sverige och den psykologiska process som därvid uppstår – flyktingkrisen – analyseras också.
En avsevärd del av boken ägnas insatser och åtgärder för nyanlända flyktingar.
Att möta flyktingar vänder sig i första hand till studenter och personal inom vården och socialtjänsten. Även andra som möter flyktingar inom t.ex. skolor, frivilligorganisationer eller på förläggningar kan ha nytta av den.
Att vara ett mänskligt hjälpmedel. En studie om att arbeta som personlig assistent
Larsson, Monica & Larsson, Stig
(2004)
Attachment at Early School Age and Developmental Risk: Examining Family Contexts and Behavior Problems of Controlling–Caregiving, Controlling–Punitive, and Behaviorally Disorganized Children
Moss, E., Cyr, C., & Dubois- Comtois, K.
(2004)
Preschool to school-age trajectories of 242 children, including 37 with insecure-disorganized and 66 with insecure-organized attachment patterns, were examined. Child attachment and stressful life events (the latter retrospectively) were measured at ages 5-7, and mother-child interactive quality, parenting stress, marital satisfaction, and teacher-reported behavior problems were evaluated concurrently and 2 years earlier. Results indicated that all three disorganized subgroups had poorer mother-child interactive patterns and more difficult family climates than secure or insecure-organized children. The controlling-punitive group showed significant increases in maternal reports of child-related stress between preschool and school age. The controlling-caregiving group showed greater likelihood of loss of a close family member, and mothers of the insecure-other group reported lower marital satisfaction and greater likelihood of their own or a spouse's hospitalization. Controlling-punitive children had higher externalizing scores, and controlling-caregiving children higher internalizing scores, than secure children.
Attachment at Early School Age and Developmental Risk: Examining Family Contexts and Behavior Problems of Controlling-Caregiving, Controlling-Punitive, and Behaviorally Disorganized Children. (PDF Download Available). Available from: https://www.researchgate.net/publication/8471077_Attachment_at_Early_School_Age_and_Developmental_Risk_Examining_Family_Contexts_and_Behavior_Problems_of_Controlling-Caregiving_Controlling-Punitive_and_Behaviorally_Disorganized_Children [accessed Jan 3, 2016].
Avoidable mortality among child welfare recipients and intercountry adoptees: a national cohort study
Hjern A, Vinnerljung B & Lindblad F
(2004)
OBJECTIVE:
To compare rates of avoidable mortality in adolescence in child welfare recipients and intercountry adoptees with the general population.
DESIGN:
A register study of the entire national cohort of 989 871 Swedish residents born 1973-82 in the national census of 1990. Multivariate Cox analyses of proportional hazards were used to analyse avoidable deaths between 13 to 27 years of age during 1991-2000.
PARTICIPANTS:
12 240 intercountry adoptees, 6437 foster children, 15 868 subjected to other forms of child welfare interventions, and the remaining 955 326 children in the cohort.
RESULTS:
Intercountry adoptees had a high sex and age adjusted relative risk (RR) for suicide death only (RR 3.5; 95% CI 2.3 to 5.0) in comparison with the general population, while foster children and adolescents who had received other kinds of child welfare interventions had high sex and age adjusted RRs for suicide death; 4.3 (2.8 to 6.6) and 2.7 (1.9 to 3.9) respectively, as well as for other avoidable deaths; RRs 2.5 (1.6 to 3.7) and 2.8 (2.1 to 3.6). The RRs of avoidable deaths for foster children and other child welfare recipients decreased considerably when compared with youth brought up in homes with similar psychosocial characteristics as their original home.
CONCLUSION:
Children in substitute care in early childhood were at particular risk for suicide death in adolescence and young adulthood. Child welfare interventions were insufficient to prevent excess deaths in children at risk.
Barn som bevittnat våld mot mamma - en studie om kvinnor och barns som vistas på kvinnojourer i Göteborg Forskningsrapport
Almqvist, K., & Broberg, AG.
(2004)
Being in the light or in the shade: persons with Parkinson's disease and their partners' experience of support
Birgersson, A. M. and A. K. Edberg
(2004)
Interviews with six couples, persons with Parkinson's disease and their partners, were tape-recorded, transcribed and analysed using manifest and latent content analysis. The couples' experiences could be interpreted as Being in the light and Being in the shade of support, with internal variations for the patients and their partners. The narratives also revealed that the disease meant a transition of roles in their relation seen in different patterns: From unity towards unity, From unity towards distance and From distance towards unity. The results indicate that there is a need for more specialised and individually adjusted support.
Brief family intervention effects on adolescent substance initiation: school-level growth curve analyses 6 years following baseline.
Spoth R, Redmond C, Shin C, Azevedo K.
(2004)
This study examines the effects of 2 brief family-focused interventions on the trajectories of substance initiation over a period of 6 years following a baseline assessment. The 2 interventions, designed for general-population families of adolescents, were the 7-session Iowa Strengthening Families Program (ISFP) (Molgaard & Spoth, 2001) and the 5-session Preparing for the Drug Free Years Program (PDFY) (Catalano, Kosterman, Haggerty, Hawkins, & Spoth, 1999). Thirty-three rural public schools were randomly assigned to the ISFP, the PDFY, or a minimal-contact control condition. The authors evaluated the curvilinear growth observed in school-level measures of initiation using a logistic growth curve analysis. Alcohol and tobacco composite use indices--as well as lifetime use of alcohol, cigarettes, and marijuana--and lifetime drunkenness, were examined. Significant intervention-control differences were observed, indicating favorable delays in initiation in the intervention groups.
Caregivers dealing with stroke pull together and feel connected
Pierce LL, Steiner V, Govoni AL, Hicks B, Thompson TL, Friedemann ML.
(2004)
Changes that can accompany stroke may create considerable stress for individuals caring for the affected person. This study explored the coping process for nine rural-dwelling caregivers of persons with stroke and the responses of these caregivers to a Web-based support program. The qualitative data management program QSR N 5 was used to analyze quotes from telephone interviews and computer entries. Stories of how caregivers came together and supported one another emerged from the data collected as part of a larger study that examined the experience of caring. Friedemann's framework of systemic organization guided data analysis and interpretation. Actions demonstrated by the caregivers illustrated the process of crisis resolution through family togetherness in which nurses were included. The findings of this study aided in understanding this process and gave direction for nurses working with such clients.
Caring for older people and employment. A review of literature prepared for the Audit Commission
Pickard, L.
(2004)
This literature review is concerned with caring for older people and employment, with
a particular focus on the public sector. The review has been commissioned from the
Personal Social Services Research Unit (PSSRU) by the Audit Commission.
At the request of the Audit Commission, the emphasis of the review is on two main
questions. First, there is the question of the extent to which mainstream services and
employers take into account the particular circumstances and needs of carers of older
people in their provision of services or employment practices. Second, there is the
question of the effectiveness or cost-effectiveness of carer-friendly services and
employment practices. The Audit Commission asked the researcher to consider
effectiveness and cost-effectiveness from the perspectives of the different interest
groups involved, that is, the carer, the employer, the person being cared for and the
public interest. The focus of the review is primarily on the role of public sector
employers in offering carer-friendly employment policie
Childhood bereavement services: issues in UK service provision
Rolls, L. & Payne, S.
(2004)
This paper outlines the broad key findings from a research project on UK childhood bereavement service provision, using eight organizational case studies. Despite a shared objective of 'helping bereaved children' services were very diverse. Three organizational types were identified with differing management and administrative structures, each of which had different implications for staff. Although the overall size and employment status (paid or unpaid) of the respective workforces varied, the number of staff who worked directly with children or their families was similar. Direct and indirect services were offered within a matrix of provision that focussed either on children or on families, and involved individual and/or group work activities. Obtaining sufficient funding presented services with immense challenges. Unless they were part of a larger 'host' organization with a continued commitment to childhood bereavement service provision, services were unable to rely on regular and long-term sources of funding. This can have a detrimental impact on the core business, and on the ability of the service to develop their provision. Improving and increasing research, audit and evaluation of childhood bereavement services would contribute to supporting the case for both individual services and for the childhood bereavement sector as a whole.
Continuity of the self in later life: Perceptions of informal caregivers
Åberg, A. C., Sidenvall, B., Hepworth, M., O'Reilly, K., & Lithell, H.
(2004)
Coping responses inventory: An update on research applications and validity
Moos R.
(2004)
Coping responses inventory: An update on research applications and validity
Moos R.
(2004)
This brief self-report inventory identifies cognitive and behavioural responses the individual used to cope with a recent problem or stressful situation. The 8 scales include Approach Coping Styles (Logical Analysis, Positive Reappraisal, Seeking Guidance and Support, and Problem Solving) and Avoidant Coping Styles (Cognitive Avoidance, Acceptance or Resignation, Seeking Alternative Rewards, and Emotional Discharge). Information about reliability and validity is presented in the professional manual for each version.
The CRI can be used in in counselling, stress management education, and other settings to identify and monitor coping strategies in adults and adolescents, to develop better clinical case descriptions, and to plan and evaluate the outcome of treatment.
Two separate versions of the CRI have been developed, the CRI-Adult (older than 18 years of age) and the CRI-Youth (ages 12-18 years). Each version has its own manual and an Ideal and an Actual Form. The Ideal Form may be used to compare actual and preferred coping styles, to set treatment goals, and to monitor progress. The Actual Form surveys the individual's actual coping behaviour, whereas the Ideal Form surveys preferred coping styles. Both forms are written at a 6th-grade reading level.
Individuals complete the self-report inventory, marking answers on the answer sheet. The carbonless bottom sheet contains a scoring grid for quick and easy calculation of raw scores. The back page of the answer sheet contains a profile for determining and plotting T-scores and examining patterns of coping. Scoring and profiling take about 5 minutes.
Cortical processing of tactile language in a postlingually deaf-blind subject
Osaki Y, Doi K, Takasawa M, Noda K, Nishimura H, Ihara A, et al.
(2004)
We compared neural activation detected by magnetoencephalography (MEG) during tactile presentation of words and non-words in a postlingually deaf-blind subject and six normal volunteers. The left postcentral gyrus, bilateral inferior frontal gyri, left posterior temporal lobe, right anterior temporal lobe, bilateral middle occipital gyri were activated when tactile words were presented to the right hand of the deaf-blind subject. This set of activated regions was not observed in the normal volunteers, although activation of several combinations of these regions was detected. Positron emission tomography confirmed the location of the MEG-activated areas in the deaf-blind subject. Our results demonstrated that the deaf-blind subject is heavily involved in interpreting tactile language by enhancing cortical activation of cognitive and semantic processing. © 2004 Lippincott Williams & Wilkins.
Dagvård som avlastning för anhöriga
Måvall, L.
(2004)
Day care as respite for family members
Måvall, L., & Malmberg, B.
(2004)
Den fulbordade livscykeln
Eriksson, E. H., & J., E.
(2004)
I Den fullbordade livscykeln blickar Erik H Erikson tillbaka på sin berömda psykosociala utvecklingsteori. Människans psykiska utveckling fortgår i åtta olika stadier livet igenom, enligt Erikson. Han betraktar här, 80 år gammal, sin tankebyggnad utifrån den sista livsfasen där han själv befinner sig – vishetens, förtvivlans och försoningens fas. Boken ger en sammanfattning av hans teorier och ett koncentrat av hans livsvisdom.
I ljuset av den sista perioden i livet får Eriksons framställning en djupt existentiell prägel. Han uppehåller sig bl a vid ritualiseringen i samspelet mellan människor och det upplyftande mötet med "den andre", vilket håller hoppet vid liv och kan ge näring åt tron på någonting bortom den fullbordade livscykeln.
I ett tillägg i denna utgåva inför Joan Erikson, hans hustru och samarbetspartner i över 60 år, ett nionde stadium, åldrandet i 80-90-årsåldern. Själv över 90 lägger hon vidare ett samhälleligt-kulturellt perspektiv på åldrandet och tar slutligen upp begreppet gerotranscendens, tendensen att gamla människor löser upp tids-rumsperspektivet på ett sätt som inte sällan vidgar det och möjliggör en fördjupad andlighet.
Health Education Needs of Patients with Schizophrenia and their Relatives
Gumus, Aysun Babacan
(2008)
The purpose of this study was to determine the health education needs of patients with schizophrenia and their relatives. A total of 80 patients and 80 relatives were included in the study. The data were collected using Descriptive Characteristics Questionnaire and Evaluation of Health Educational Needs Form. The subjects that patients and their relatives felt they had the greatest need to learn more about were general information about schizophrenia, coping with symptoms of schizophrenia, and communication and social relationships. It was determined that the patients' health education needs were affected by their employment status, income level, and longest place of residence, and their relatives' health education needs, by their marital status, degree of family relationship, educational level, income level, whether or not they were a member of an association or group, and whether or not they had received education about schizophrenia. On the basis of the health education needs identified by the patients with schizophrenia and their relatives, a health education program should be prepared.
Health-promoting conversations about hope and suffering with couples in palliative care.
Benzein, E., Saveman, B.
(2008)
Health-promoting conversations about hope and suffering with couples in palliative care.
Benzein, E., & Saveman, B.
(2008)
BACKGROUND:
Families living with a dying relative face existential challenges which need to be met by caregivers in a dialogue.
AIM:
To describe couples' experiences of participating in nurse-initiated health-promoting conversations about hope and suffering during home-based palliative care.
METHOD:
Data comprised semi-structured evaluative interviews with six couples. Each couple together had previously participated in three health-fostering conversations with nurses. Data were analyzed by content.
RESULT:
Talking with nurses about existential issues such as hope and suffering made couples feel that they were part of a trustful relationship, and that it was a healing experience. It gave them the opportunity to unburden themselves, as well as a way of learning and finding new strategies for managing daily life.
CONCLUSION:
Health-promoting conversations about hope and suffering should be implemented as a natural part of the caring relationship between caregivers and families in the palliative context.
Hemsjukvård i samverkan för äldre med komplexa vård- och omsorgsbehov
Althén, A.
(2008)
Hemvårdsbidrag – ersättning eller erkännande? En kvalitativ studie om några biståndsbedömares syn på hemvårdsbidrag och ansvaret för äldres omsorg [C-uppsats].
Glader, S. & Lindahl, H.
(2008)
Home Health and Informal Care Utilization and Costs Over Time in Alzheimer's Disease
Zhu, C. W., Torgan, R., Scarmeas, N., Albert, M., Brandt ,J., Blacker, D. et al.
(2008)
How family members of a person suffering from mental illness experience psychiatric care
Sjöblom L-M, Wiberg L, Pejlert A, Asplund K.
(2008)
Objective The aim of this study was to describe the experience of contact with formal psychiatric care, as narrated by family members of a person suffering from mental illness. Method The study was based on a qualitative design. Focus-groups with 16 family members were transcribed and interpreted using qualitative content analysis. Findings The findings present four themes; being disappointed with formal psychiatric care, being in need of understanding from and collaboration with formal psychiatric care, being positive about the care and the own contribution to the care and being subjected to preconceived ideas. The findings were interpreted as the families relationship with formal psychiatric care being characterized by a struggle for power. Conclusion To create a healthy situation for the families and thereby improve the situation for the patient, representatives of formal care should carefully consider how the families should be involved. Key words Family, focus groups, mental health, nursing, qualitative research
How family members of a person suffering from mental illness experience psychiatric care
Sjöblom, Lena-Marie, Wiberg, L., Pejlert, Anita & Asplund, Kenneth
(2008)
How family members of a person suffering from mental illness experience psychiatric care
Sjöblom, L., Wiberg, L., Pejlert, A., & Asplund, K.
(2008)
Hur ska vi bemöta demenssjuka? : en handbok för vårdpersonal och anhöriga.
Polmé, O. & Lyons, L.
(2008)
Into adulthood: a follow-up study of 718 youths who were placed in out-of-home care during their teens
Vinnerljung B. & Sallnäs M.
(2008)
ABSTRACT In this study, national register data were used to analyse long-term outcomes at age 25 for around 700 Swedish young people placed in out-of-home care during their teens. The sample consisted of 70% of all 13- to 16-year olds who entered out-of-home care in 1991. Results revealed a dividing line between young people placed in care for behavioural problems and those placed for other reasons. Young woman and men from the first group had – in comparison with peers who did not enter care – very high rates of premature death, serious involvement in crime, hospitalizations for mental-health problems, teenage parenthood, self-support problems and low educational attainment. Young people who were placed for other reasons had better outcomes, but still considerably worse than non-care peers. Young women tended to do better than young men, regardless of reasons for placement. Very high rates of hospitalizations for mental health problems were found among young people placed for behavioural problems. Breakdown of placement was found to be a robust indicator of poor long-term prognosis.
Into adulthood: a follow‐up study of 718 young people who were placed in out‐of‐home care during their teens - ResearchGate. Available from: http://www.researchgate.net/publication/230164185_Into_adulthood_a_followup_study_of_718_young_people_who_were_placed_in_outofhome_care_during_their_teens [accessed Aug 5, 2015].
Kärleken prövas när livspartnern blir vårdare : Tema : Kärlekens låga
Sand, A.-B. M.
(2004)
Livets sista boning : Anhörigskap, åldrande och död på sjukhem
Whitaker, A.
(2004)
This thesis is based on an empirical study carried out as a case study at a nursing home ward in the region of Stockholm. The aim of this study is to describe and analyse the conditions of ageing and dying for the old persons living in a nursing home, as well as for their relatives. Different methods were used: participant observations, informal conversations with the elderly residents, with the staff and with visiting relatives. Furthermore, twenty-one (in-depth) interviews with eighteen relatives were also conducted.From the results it became clear that the two major features embedded in the overall experience of the nursing home setting were: a sense of waiting and the presence of dying and death. For the residents a major part of daily life was marked by their dependency on others and on their bodily decline. It is argued that the institutional features contribute to reinforcing the images/pictures of bodily decline. As such, the nursing home also had a significant impact on the experiences of the relatives. The compact environment of frailty and death could arouse feelings of anxiety and worries among the relatives about their own ageing and death.Analyses of the data based on the interviews with relatives indicated a number of central patterns: accompanying each other, understanding the old person's health and needs, recreating roles, sharing the care and preparing for dying and death. These also form the theoretical structure of the thesis. A finding of the study was that the relationship between the old person and the relative underwent important changes. Not only the placement in itself but also the poor health of the old person contributed to this change. As a consequence new roles emerged within the relationship, as well as with the staff. Many relatives continued to visit and also contributed to the care even though this care work could vary and mostly was quite limited in both content and extent. One group among the relatives not only visited, but they truly shared the old person's daily life. It was found that relatives, irrespective of the caring role, try to guard and maintain the identity and dignity of the old person.Based on an analysis of the different themes/processes found in the data, four core categories emerged: time, space, body and dignity. They all constitute the existential condition that affects the lives of the old persons and their relatives in an institutional setting. They also embrace the complexity and contradictions that characterise the data. Therefore, in the concluding chapter, the spatial and temporal contradictions of the nursing home are discussed. Another issue concerned the bodily themes found in the data and how these illuminate the diverse meanings and the, sometimes, contradictory images of the body. These themes led to the conclusion that it is not death, but the bodily disintegration and unboundedness that the old persons and their relatives fear most. Finally, it is argued that the "light care work" carried out by the relatives is so much more than sporadic visits. Instead, these visits can be seen as 1) rituals contributing to a sense of continuity and coherence, 2) representations of the relationships and 3) a way in which relatives can maintain and guard the old person's identity and dignity.
Livets sista boning : anhörigskap, åldrande och död på sjukhem
Whitaker, A.
(2004)
This thesis is based on an empirical study carried out as a case study at a nursing home ward in the region of Stockholm. The aim of this study is to describe and analyse the conditions of ageing and dying for the old persons living in a nursing home, as well as for their relatives. Different methods were used: participant observations, informal conversations with the elderly residents, with the staff and with visiting relatives. Furthermore, twenty-one (in-depth) interviews with eighteen relatives were also conducted.From the results it became clear that the two major features embedded in the overall experience of the nursing home setting were: a sense of waiting and the presence of dying and death. For the residents a major part of daily life was marked by their dependency on others and on their bodily decline. It is argued that the institutional features contribute to reinforcing the images/pictures of bodily decline. As such, the nursing home also had a significant impact on the experiences of the relatives. The compact environment of frailty and death could arouse feelings of anxiety and worries among the relatives about their own ageing and death.Analyses of the data based on the interviews with relatives indicated a number of central patterns: accompanying each other, understanding the old person's health and needs, recreating roles, sharing the care and preparing for dying and death. These also form the theoretical structure of the thesis. A finding of the study was that the relationship between the old person and the relative underwent important changes. Not only the placement in itself but also the poor health of the old person contributed to this change. As a consequence new roles emerged within the relationship, as well as with the staff. Many relatives continued to visit and also contributed to the care even though this care work could vary and mostly was quite limited in both content and extent. One group among the relatives not only visited, but they truly shared the old person's daily life. It was found that relatives, irrespective of the caring role, try to guard and maintain the identity and dignity of the old person.Based on an analysis of the different themes/processes found in the data, four core categories emerged: time, space, body and dignity. They all constitute the existential condition that affects the lives of the old persons and their relatives in an institutional setting. They also embrace the complexity and contradictions that characterise the data. Therefore, in the concluding chapter, the spatial and temporal contradictions of the nursing home are discussed. Another issue concerned the bodily themes found in the data and how these illuminate the diverse meanings and the, sometimes, contradictory images of the body. These themes led to the conclusion that it is not death, but the bodily disintegration and unboundedness that the old persons and their relatives fear most. Finally, it is argued that the "light care work" carried out by the relatives is so much more than sporadic visits. Instead, these visits can be seen as 1) rituals contributing to a sense of continuity and coherence, 2) representations of the relationships and 3) a way in which relatives can maintain and guard the old person's identity and dignity.
Living with an elephant: growing up with parental substance misuse
Kroll B.
(2004)
Although parental substance misuse is now a focus of concern in child welfare practice, we know little about what it is really like for children who grow up in families where adult drug and/or alcohol use is an issue. Set against a backdrop of research links between parental substance misuse and child maltreatment, this article examines a number of studies that focus on the experiences of children and young people in this context. Emerging themes are identified which provide insight into the world of children for whom a substance is, effectively, a family member –'the elephant in the living room'– and the implications for practice, particularly in relation to children's visibility, disclosure and confidentiality, are considered. It is argued that a focus on the 'elephant' often leads to children remaining 'invisible' to those whose role it is to ensure their welfare.
Livssituationen två år efter stroke. En uppföljning av strokedrabbade och deras närstående
Socialstyrelsen
(2004)
Long-term outcome after brain injury: with focus on return to work, life satisfaction and participation
Johansson, Ulla
(2004)
Love - motivation behind home care
Rudenstam, C.
(2004)
LSS – Särskilt personligt stöd
SOU
(2004)
Det är angeläget att särskilt personligt stöd blir en flexibel insats som kan kompletteras dels efter individuella behov, dels efter förändrade förutsättningar beroende på teknikutveckling och annan kunskaps- och kompetensutveckling. Det är därför inte rimligt att precisera en heltäckande katalog av åtgärder som skall ingå i insatsen. Utifrån dagens erfarenhet av innehållet i råd och stöd kan dock tre delar utgöra bas i särskilt personligt stöd; Kunskapsstöd, psykosocialt stöd och särskilt kompletterande stöd.
Det är viktigt att det inte utvecklas någon skarp gräns mellan dessa delar eftersom det är en styrka om den samlade kompetensen kan samverka på det sätt som bäst motsvarar individens behov. Detta gränsöverskridande arbetssätt kan även i fortsättningen medföra problem i avgränsningen av insatsen, men en efterfrågan på tydliga riktlinjer och detaljstyrning måste vägas mot de enskildas behov av individuellt anpassade åtgärder.
Förtydligandet av insatsen innebär i huvudförslaget att det inom särskilt personligt stöd skall vara möjligt att komplettera kvalitativt eller kvantitativt med åtgärder som kan betraktas ingå i habilitering och rehabilitering om dessa behov inte tillgodoses på annat sätt. Detta gäller alla de fyra delar som normalt anses ingå i habilitering och rehabilitering - medicinska, psykologiska, sociala och pedagogiska.
Managing children's disruptive behaviour : a guide for practitioners working with parents and foster parents
Herbert, M. and J. Wookey
(2004)
Measures used to assess burden among caregivers of stroke patients: a review
Visser-Meily JM, Post MW, Riphagen, II, Lindeman E.
(2004)
Objective: To describe measures used to evaluate the burden of caregiving experienced by caregivers of stroke patients and their clinimetric properties.
Design: A review of the literature was conducted to examine burden scales with regard to concept, feasibility, internal consistency, validity, reliability and responsiveness.
Results: The literature search resulted in 45 measures of caregiver outcomes, including 16 different measures of caregiver burden. About half of the scales were used only once and were not further described. Nearly all instruments measure the various dimensions of burden (competency, negative feelings, social relations, participation problems, physical and mental health and economic aspects), but not in the same proportions. Most measures showed good internal consistency, and validity was demonstrated for all measures except one. However, not much is known about the reliability and responsiveness of these measures.
Conclusions: No measure has proven superiority above others. Future research should focus on comparisons between existing instruments and on their reliability and responsiveness.
Meeting the needs of parentally bereaved children: a framework for child-centered parenting
Saldinger, A., Porterfield, K., & Cain, A.C.
(2004)
Abstract
This article describes the development and deployment of a framework for measuring parenting capacities in the context of bereavement. Grounded theoretical analysis of interviews with a community sample of 41 bereaved spouses with school-aged children elicited a set of nine bereavement-specific parenting tasks. A corollary coding system (covering all nine parenting tasks) was created to transform interview materials into quantitative data, thus permitting systematic empirical investigation of the parenting capacities of bereaved spouses. Parenting behaviors were coded on a 5-point scale ranging from least child-centered to most child-centered. Sex of surviving parent and circumstances of death proved to be significant mediating variables: mothers were more child-centered than fathers, and parents surviving sudden deaths more child-centered than those surviving anticipated deaths. Lengthy illness was associated with less child-centered parenting. The more child-centered the parenting, the less symptomatic the child as measured by parent report (Child Behavior Checklist) and child self-report (Children's Depression Inventory, Revised Child Manifest Anxiety Scale). Child-centered parenting was associated with more positive and fewer negative perceptions of the surviving parent by the child as measured by the Parent Perception Inventory. Implications of findings are discussed.
Men’s violence against women: a challenge in antenatal care
Stenson, K.
(2004)
Men's violence against women is a universal issue affecting health, human rights and gender-equality. In pregnancy, violence is a risk for both the mother and her unborn child.The overall aims were: to determine the prevalence of such violence in a Swedish pregnant population, to investigate pregnant women's attitudes to questioning about exposure to violence, and to evaluate experience gained by antenatal care midwives having routinely questioned pregnant women regarding violence.All women registered for antenatal care in Uppsala, Sweden, during 6 months were assessed regarding acts of violence. The Abuse Assessment Screen (AAS) was used twice during pregnancy and again after delivery when the women were asked an open-ended written question regarding attitudes to questioning about violence. Midwives' experiences regarding routine assessment were evaluated in focus group discussions.The AAS questions were answered by 93% (1,038) of those eligible. Physical abuse by a partner or relative during or shortly after pregnancy was reported by 1.3%, and by 2.8% when the year preceding pregnancy was included. Lifetime sexual abuse was reported by 8.1%. Repeated questioning increased the abuse detection rate. Abused women reported more previous ill-health, and women physically abused during pregnancy more pregnancy terminations than did non-abused women. Abuse assessment was found entirely acceptable by 80%, both acceptable and unacceptable/disagreeable by 5% and solely unacceptable/ disagreeable by 3%, while 12% were neural. Abused and non-abused women did not differ regarding disinclination to answer the abuse questions. According to the midwives the delicacy of the subject and the male partners' presence were the most prominent remaining obstacles to routine determination of violence. Routines are required to make questioning about violence an integral part of antenatal care. This would necessitate a private appointment for the woman, knowledge among care providers about the nature of men's violence, and awareness of referral options.
Mutual resposibility for the aged or the fourth commandment: Who is going to take care of old.
Sundström, G., Johansson, L., & Hassing, L. B.
(2004)
Mestring
Bekkhus, M.
(2008)
Methodological issues in assessing psychological adjustment in child witnesses of intimate partner violence
Clements, C. M., Oxtoby, C., & Ogle, R. L.
(2008)
This review summarizes a growing number of methodological concerns emerging from research on child witnesses of intimate partner violence (IPV). A brief summary of various psychological, biological, and cognitive impairments associated with witnessing IPV is presented. Directions for future research in this area are explored with particular attention paid to experimental design. Advantages and disadvantages of retrospective, cross-sectional, and longitudinal designs are evaluated. Suggested improvements include the use of multiple informants, behavioral observations, and prospective, longitudinal assessment.
Mother, carer, worker
Land H.
(2008)
Möjlighet att leva som andra. Ny lag om stöd och service till vissa personer med funktionsnedsättning. Statens offentliga utredningar
SOU
(2008)
LSS-kommittén har haft i uppdrag att göra en bred översyn av lagen om stöd och service till vissa personer med funktionshinder (LSS) och personlig assistans. Kommitténs förslag innebär att LSS ska bestå som rättighetslag för de personer som har de mest omfattande stödbehoven till följd av funktionsnedsättningar. Det behövs dock flera förändringar av lagen. Ett tydligt barnperspektiv skrivs in i LSS. Staten ska ha ett samlat ansvar för personlig assistans. Det ska också bli tydligare regler för hur behovet av personlig assistans ska bedömas. Vidare ska en ny insats i LSS ge rätt till personlig service och boendestöd. Personer med psykiska funktionsnedsättningar ska ha rätt till insatsen daglig verksamhet om de ingår i personkretsen för stöd och service enligt lagen. Kommittén föreslår att lagen om assistansersättning (LASS) ska upphävas. Tillämpliga delar av denna lag ska istället föras in i LSS. Till betänkandet hör ett antal bilagor som publiceras i en särskild volym.
Möjlighet att leva som andra. Ny lag om stöd och service till vissa personer med funktionsnedsättning. Statens offentliga utredningar.
SOU
(2008)
LSS-kommittén har haft i uppdrag att göra en bred översyn av lagen om stöd och service till vissa personer med funktionshinder (LSS) och personlig assistans. Kommitténs förslag innebär att LSS ska bestå som rättighetslag för de personer som har de mest omfattande stödbehoven till följd av funktionsnedsättningar. Det behövs dock flera förändringar av lagen. Ett tydligt barnperspektiv skrivs in i LSS. Staten ska ha ett samlat ansvar för personlig assistans. Det ska också bli tydligare regler för hur behovet av personlig assistans ska bedömas. Vidare ska en ny insats i LSS ge rätt till personlig service och boendestöd. Personer med psykiska funktionsnedsättningar ska ha rätt till insatsen daglig verksamhet om de ingår i personkretsen för stöd och service enligt lagen. Kommittén föreslår att lagen om assistansersättning (LASS) ska upphävas. Tillämpliga delar av denna lag ska istället föras in i LSS. Till betänkandet hör ett antal bilagor som publiceras i en särskild volym.
Nationell strategi för ett utvecklat föräldrastöd – en vinst för alla. Nationell strategi för samhällets stöd och hjälp till föräldrar i deras föräldraskap. Föräldrastödsutredningen
SOU
(2008)
Nationell utvärdering av förskolan: Tio år efter förskolereformen
Skolverket
(2008)
Syftet med utvärderingen är att följa upp resultaten från den första nationella utvärderingen, som presenterades 2004 i rapporten "Förskola i brytningstid", och studera förskolereformens genomslag och konsekvenser knappt tio år efter införandet av läroplanen. Utvärderingen sätter också in den svenska förskolan i ett internationellt perspektiv och pekar på viktiga vägval som förskolan står inför i sin fortsatta utveckling.
Utvärderingen bygger dels på en enkätstudie riktad till ledningsansvariga i landets samtliga kommuner och kommundelar, dels fallstudier i ett urval kommuner och förskolor.
Nationella riktlinjer/standarder för sörjandestöd i Storbritannien och Nordirland. Svensk version av Standards for Bereavement Care in the UK. E-publikation
Grimby A. (övers), Johansson Å. (övers)
(2008)
Som ett led i säkerställandet av trygghet, lämplighet och etik i utövande av sörjandestöd i Sverige har vi som forskare och praktiskt verksamma på detta område studerat andra länders regelverk. Då vi anser, att Storbritannien och Nordirland (refereras i texten till U.K.) kommit långt i detta hänseende - och vi också beretts tillfälle att på plats ta del av engelska stödorganisationers arbetssätt och vägledande regler - vill vi gärna vidarebefordra dokumentet och regelverket " Standards for Bereavement Care in the UK", i svensk version "De nationella riktlinjerna för sörjandestöd i Storbritannien och Nordirland". Detta sker med de engelska upphovsmännens samtycke och förhoppning om att värna om sörjandestödet även utanför deras hemland. (Engelsk titel: Standards for Bereavement Care in the UK).
Needs of elderly patients in palliative care
Wijk H, Grimby A.
(2008)
A pilot study on elderly patients' end-of-life needs was performed at a Swedish geriatric palliative ward. Thirty patients (15 men and 15 women; mean age, 79 years) with a primary diagnosis of cancer and admitted for palliative care were interviewed by a nurse using semistructured interviews. The study included demographic data, physical and psychologic status, and naming and ranking of individual needs. Elimination of physical pain was ranked as the primary need of half of the patients. Only when pain was eliminated or absent did other important needs (psychological, social, spiritual) appear frequently.
New e-service development in the homecare sector: beyond implementing a radical technology
Essén, A. & Conrick, M.
(2008)
Next-of-kin caregivers in palliative home care - from control to loss of control
Munck B, Fridlund B, Mårtensson J.
(2008)
Not throwing out the partnership agenda with the personalisation bathwater
Dickinson, H. & Glasby ,J.
(2008)
Not throwing out the partnership agenda with the personalisation bathwater
Dickinson, H. & Glasby ,J.
(2008)
När himlen är nära- : till samtalsledare som leder "När himlen är nära-grupper".
Ferm, M.
(2008)
När himlen är nära.... Att samtala med äldre om liv, död och självmord
Beskow, J., & Ferm, M.
(2008)
Närståendes konsekvenser [Elektronisk resurs] : hur kan de inkluderas i den hälsoekonomiska analysen?
Davidson, T. & Levin, L-Å.
(2008)
Offspring Caring for Their Elderly Parents: The Effect of Social Support and Gender-Role Orientation on These Caregivers' Well-Being
Ron, P.
(2008)
Offspring Caring for Their Elderly Parents: The Effect of Social Support and Gender-Role Orientation on These Caregivers' Well-Being
Ron, P.
(2008)
The Significance of Insecure and Disorganized Attachment for Children's Internalizing Symptoms: A Meta- Analytic Study
GROH, A. M., ROISMAN, G. I., VAN IJZENDOORN, M. H., BAKERMANSKRANENBURG, M. J. & FEARON, R. P.
(2012)
This meta-analytic review examines the association between attachment and internalizing symptomatology during childhood, and compares the strength of this association with that for externalizing symptomatology. Based on 42 independent samples (N = 4,614), the association between insecurity and internalizing symptoms was small, yet significant (d = 0.15, CI 0.06~0.25) and not moderated by assessment age of internalizing problems. Avoidance, but not resistance (d = 0.03, CI -0.11~0.17) or disorganization (d = 0.08, CI -0.06~0.22), was significantly associated with internalizing symptoms (d = 0.17, CI 0.03~0.31). Insecurity and disorganization were more strongly associated with externalizing than internalizing symptoms. Discussion focuses on the significance of attachment for the development of internalizing versus externalizing symptomatology.
The Use of Socially Assistive Robots for Dementia Care
Huschilt, J. and L. Clune
(2012)
Innovative solutions for dementia care are required to address the steady rise in adults living with dementia, lack of adequate staffing to provide high-quality dementia care, and the need for family caregivers to provide care for their loved ones in the home. This article provides an overview of the use of socially assistive robots (SARs) to offer support as therapists, companions, and educators for people living with dementia. Social, ethical, and legal challenges associated with the use of robotic technology in patient care and implications for the use of SARs by nurses are discussed. These items considered, the authors conclude that SARs should be considered as a viable way to assist people living with dementia to maintain their highest possible level of independence, enhance their quality of life, and provide support to overburdened family caregivers. Further research is needed to evaluate the merits of this technological approach in the care of adults with dementia.
Tidiga kommunikations- och språkinsatser till förskolebarn inom barnhabilitering
Eberhart B, Forsberg J, Fäldt A, Nilsson L, Nolemo M, Thunberg G.
(2012)
Denna rapport presenterar evidens för insatser till barn i förskoleåldern på tidig kommunikativ nivå med syfte att ge rekommendationer till svensk habiliteringsverksamhet. Utifrån en formulerad fiktiv frågeställning utförde gruppen sökningar i vetenskapliga databaser. Några svenska rapporter och magisterarbeten har också inkluderats i granskningen.
Tidiga kommunikations- och språkinsatser till förskolebarn inom barnhabilitering
Eberhart B, Forsberg J, Fäldt A, Nilsson L, Nolemo M, Thunberg G.
(2012)
Gunilla Thunberg, logoped och fil Dr på DART har på updrag av Sveriges Habiliteringschefers förening lett en grupp som sammanställt evidens för tidiga språk- och kommunikationsinsatser till förskolebarn inom barnhabilitering. Gruppen är nu färdig med sitt arbete och den 1/4 publicerades rapporten och rekommendationerna på Sveriges Habiliteringsschefers förenings hemsida. Det finns mycket spännande att ta del av när det gäller tidiga AKK-insatser så missa inte denna viktiga rapport! Du hittar den och kan ladda ner den här:
Tidiga kommunikations- och språkinsatser till förskolebarn inom barnhabilitering
Eberhart B, Forsberg J, Fäldt A, Nilsson L, Nolemo M, Thunberg G.
(2012)
Föreningen Sveriges Habiliteringschefer har som uppgift att verka för en utveckling av habiliteringsverksamheten för barn, ungdomar och vuxna utifrån de övergripande mål som beskrivs i hälso- och sjukvårdslagen, lagen om särskilt stöd och service till vissa funktionshindrade samt föreskriften God Vård, SOSFS 2005:12. Föreningen ska på olika sätt stimulera forsknings- och utvecklingsarbete. Våra verksamheter riktar sig till en grupp barn, ungdomar och vuxna i samhället med stora och komplicerade behov.
Föreningen har en ambition att gemensamt utveckla en kvalitetssäker och effektiv verksamhet. Effektivitet kan ses ur en traditionell kostnadsaspekt men också ur barnet/den vuxnes och anhörigas levnadsaspekt.
Det finns en flora av interventioner. Inom ett flertal områden behöver metoder, arbetssätt och behandlingsresultat för barn, ungdomar och vuxna med funktionsnedsättningar beskrivas och dokumenteras. För att med största möjliga säkerhet veta vad som ska utvecklas och vad som ska avvecklas krävs ett nationellt samarbete. 2001 initierades därför ett projekt som fick namnet Evidens Baserad Habilitering (EBH). Syftet var att pröva en nationell arbetsmodell bestående av övergripande arbetsgrupper med uppgift att granska olika interventioners evidens. Projektet har med tiden övergått till att bli ett vedertaget arbetssätt när det gäller att ta fram evidensläget för ett interventionsområde. Detta är den sjunde arbetsgruppen där arbetsmodellen har använts.
Arbetsgruppens uppgift har varit att:
göra en litteraturöversikt över aktuell forskning och erfarenhetsbaserade resultat avseende tidiga kommunikations- och språkinsatser till förskolebarn inom barnhabilitering,
utifrån överenskomna kriterier kritiskt granska de utvärderingar och studier som publicerats,
på ett lättfattligt sätt göra erhållna resultat tillgängliga i en rapport.
Rapporten var färdig i februari 2011 och en revidering är gjord september 2012.
Föreningen Sveriges Habiliteringschefer ställer sig bakom de rekommendationer som arbetsgruppen lagt fram. Rapporten bidrar till en fördjupad kunskap.
Ett stort tack till Anna Blomgren, Barbara Eberhart, Jessika Forsberg, Lena Nilsson, Maria Nolemo och Gunilla Thunberg för att ni med lust, energi och stort engagemang har gripit er ann uppgiften. Genom er granskning tydliggörs också behovet av fortsatta studier för att säkra en habilitering på säker grund.
Göteborg 2012-11-05
Anna Kågeson
Styrgruppen Evidensbaserad habilitering
Föreningen Sveriges Habiliteringschefer
till anhöriga i Uppsala kommun – en kartläggning, Delrapport 1, FoU-rapport 2012/5.
Winqvist, M.
(2012)
I landets kommuner har sedan slutet av 1990-talet ett omfattande arbete utförts för att
utveckla stödet till anhöriga. För att dra lärdom utvecklingsarbetet har Nationellt
kompetenscentrum anhöriga (Nka) tagit initiativ till denna undersökning för att i samverkan
med åtta av landets FoU-enheter kartlägga och följa utvecklingen av stödet till anhöriga under
tre år i åtta kommuner.
Syftet med studien är att:
- Kartlägga innehållet i stödet till anhöriga, hur stödet organiseras, planeras, följs upp
och utvärderas inom områdena äldre, funktionshinder och individ- familjeomsorg samt
samverkan mellan kommun, landsting, ideella organisationer och andra aktörer inom
området.
- Undersöka hur de olika huvudintressenterna bedömer kvaliteten på stödet till anhöriga
- Under tre år följa utvecklingen i de kommuner/kommundelar som ingår i studien.
Stödet till anhöriga i de utvalda kommunerna har kartlagts år 2010 och år 2013 genom att ta
del av tillgängliga dokument, kommunernas hemsida och informationsblad samt intervjuer
med och enkätutskick till chefer och andra nyckelpersoner. Genom en enkätstudie med
uppföljande telefonintervjuer har anhörigas situation och syn på sitt stöd, undersökts vid två
tillfällen. Årligen genomfördes fokusgruppsintervjuer, en inom vardera äldre-,
funktionshinder- samt individ och familjeområdet med syftet att beskriva och följa
utvecklingen av stödet till anhöriga; vad som fungerade bra och mindre bra. I varje
fokusgrupp ingick personal, beslutsfattare och representanter från ideella sektorn.
I denna delrapport, som också är slutrapport för hela projektet, presenteras resultatet för den
sista kartläggningen, gällande år 2013. Utvecklingen av anhörigstödet under de senaste åren
beskrivs också genom en jämförelse av resultaten från de olika kartläggningarna.
Tyngdpunkten i denna sammanfattning ligger på denna jämförelse.
Resultat
Det har inte skett några omvälvande förändringar i anhörigstödet i Uppsala kommun som
helhet under åren 2010 till 2013, men utvecklingen har inte stått stilla. Medvetenheten om
vikten av ett anhörigperspektiv hade på flera håll ökat.
Anhörigcentrum genomgick under tidsperioden en stor organisationsförändring.
Verksamheten bedrevs under två år som projekt, för att sedan fortsätta med ettåriga avtal i
väntan på beslut om eventuell konkurrensutsättning. Kunskapen om Anhörigcentrums
existens ökade under undersökningsperioden i kommunen och allt fler anhöriga sökte sig dit.
Målgruppen förändrades genom att också inkludera anhöriga till personer på boenden.
Anhöriga till äldre personer var fortfarande den största målgruppen, men en ökning av
anhöriga till yngre personer och framför allt från psykiatri och socialpsykiatri kunde noteras.
Utformningen av stödet till anhöriga var i stort densamma, men förändrades i viss mån till
exempel genom att anhöriggrupperna vände sig till andra målgrupper, rekreationshelger
infördes och anhöriga fick möjlighet till juristhjälp. Behovsinventeringar gjordes årligen, men
på lite olika sätt och med olika fokus. Anhörigcentrum ingick vid tiden för kartläggning två i
kommunens Nöjd-Kund-Index. Samverkan med landstinget utvecklades under tidsperioden
med t.ex. bemanning av "anhörighörna" på Akademiska sjukhuset och Anhörigcentrum hade
också tagit en aktiv del i landstingets projekt för utveckling av anhörigstöd.
8
I Äldrenämndens uppdragsplaner var effektmålen desamma för anhörigstödet under
uppföljningstiden, men målvärdena för antalet personer som skulle använda sig av
anhörigstödet (läs Anhörigcentrum) ökade från år till år. I förfrågningsunderlaget gällande
hemvård hade nya ska-krav införts under en egen rubrik; Anhörigvänlig vård och omsorg.
Inom hemvården hade också anhöriga börjat uppmärksammas genom anhörigträffar
information med mera. Inom vård- och omsorgsboendena fortsatte anhörigstödet
huvudsakligen inom den palliativa och avancerade sjukvården, men nytt var att Silviasystrar
inom åtminstone ett annat boende hade introducerat anhöriggrupper. Ett omfattande
värdegrundsarbete genomfördes inom äldreomsorgen som också inkluderade anhörigfrågor.
I förfrågningsunderlagen för upphandling av LSS-boendeenheter hade år 2013 infogats, under
rubriken Anhöriga, specifika ska-krav rörande anhöriga som inte hade funnits tidigare. Inom
Affärsområde assistans hade en grupp chefer i utvecklingssyfte börjat arbeta med
anhörigfrågor och anhörigas delaktighet. Verksamheten för anställda anhöriga bedrevs med
höga ambitioner och engagemang. Affärsområdeschefen i Affärsområde barn, ungdom &
familj beklagade bristen på stöd till anhöriga till personer under 21 år. Några insatser inom
verksamheten hade blivit mer flexibla bland annat för att underlätta för anhöriga. Arbete med
Samordnad individuell plan (Sip) infördes under uppföljningstiden och detta trodde många
skulle underlätta anhörigas situation.
I måldokument från de båda åren lyftes helhetsperspektiv och familjens roll fram på likartat
sätt inom individ- och familjeområdet. I kommunens drogpolitiska program nämndes
anhöriga som målgrupp för verksamheten. Viktiga stödinsatser erbjöds under hela den
undersökta tidsperioden inom Råd- och behandlingsgruppen, Trappan och familjeenheterna.
Inom Affärsområde socialpsykiatri & beroende hade en ny form av utbildning skapats. Den så
kallade återhämtningsakademin som ämnade samla brukare, personal och anhöriga i
gemensamma utbildningar.
Resultaten från enkäten till de anhöriga skiljer sig inte i någon större omfattning mellan de
båda studerade åren. Det är relativt stora andelar av respondenterna som beskriver en
problematisk livssituation och resultaten antyder också att det är de känslomässiga
dimensionerna som kan kräva ytterligare stödinsatser.
Det mest slående resultatet i de båda intervjuundersökningarna var att de anhöriga var nöjda
med det stöd som de hade fått. Framför allt gällde detta Anhörigcentrums verksamhet.
Rapporten avslutas med en begreppsdiskussion. Orden anhöriga, närstående, anhörigstöd med
flera används på olikartade sätt. För att kunna beskriva, följa, jämföra och inte minst utveckla
innehållet i stödet till anhöriga krävs att begreppsapparaten utvecklas. Fördelar och nackdelar
med ett specialiserat centraliserat anhörigstöd i jämförelse med ett integrerat decentraliserat
stöd diskuteras vidare och vikten av att ett anhörigperspektiv och anhörigstöd implementeras i
hela socialtjänsten betonas. För detta krävs bland annat att anhörigfrågorna finns med i
styrdokumenten på alla nivåer och att utbildningsinsatser genomförs.
Uppsala kommun har i en nationell jämförelse legat långt framme i anhörigfrågor under en
lång tid. Klimatet för att bygga upp och utveckla ett (specialiserat) anhörigstöd har varit gott.
En förhoppning är att den positiva trenden kommer att fortsätta i vetskapen om att mycket
hitintills är gjort, men att de svåraste uppgifterna kanske återstår; att se till att
anhörigperspektiv och anhörigstöd integreras inom hela socialtjänsten.
Translation of Two Evidence-Based Programs for Training Families to Improve Care of Persons With Dementia
Teri L, McKenzie G, Logsdon RG, McCurry SM, Bollin S, Mead J, et al.
(2012)
The need for evidence-based non-pharmacological community programs to improve care of older adults with dementia is self-evident, considering the sheer numbers of affected individuals; the emotional, physical, and financial toll on affected individuals and their caregivers; the impact on our health care system; and the growing availability of evidence regarding the potential for psychosocial interventions to enhance care and decrease costs. To address this need, the Administration on Aging has begun funding translation of evidence-based programs into community settings. Two programs, Reducing Disability in Alzheimer's Disease and STAR-Community Consultants (STAR-C), were selected by the Ohio Department of Aging (in collaboration with the Alzheimer's Association Chapters in Ohio) and the Oregon Department of Health Services (in partnership with Area Agencies on Aging and the Oregon Chapter of the Alzheimer's Association) to be implemented by their staff. Both programs are designed to improve care, enhance life quality, and reduce behavioral problems of persons with dementia and have demonstrated efficacy via randomized controlled trials. This article addresses the developmental and ongoing challenges encountered in the translation of these programs to inform other community-based organizations considering the translation of evidence-based programs and to assist researchers in making their work more germane to their community colleagues.
Ungdomars psykosociala hälsa
Lager, A., & Ahrén-Moonga, J.
(2012)
Unge pårørende og efterladtes trivsel: en analyse av trivsel og mistrivsel blandt unge, som har oplevet alvorlig sygdom eller dødsfald i naermeste familie
Nielsen, J.C., Sørensen, N.U., & Hansen, N.M.
(2012)
Universal alcohol misuse prevention programmes for children and adolescents: Cochrane systematic reviews
Foxcroft DR, Tsertsvadze A.
(2012)
AIMS:
Alcohol misuse by young people causes significant health and social harm, including death and disability. Therefore, prevention of youth alcohol misuse is a policy aim in many countries. Our aim was to examine the effectiveness of (1) school-based, (2) family-based and (3) multi-component universal alcohol misuse prevention programmes in children and adolescents.
METHODS:
Three Cochrane systematic reviews were performed: searches in MEDLINE, EMBASE, PsycINFO, Project CORK and the Cochrane Register of Controlled Trials up to July 2010, including randomised trials evaluating universal alcohol misuse prevention programmes in school, family or multiple settings in youths aged 18 years or younger. Two independent reviewers identified eligible studies and any discrepancies were resolved via discussion.
RESULTS:
A total of 85 trials were included in the reviews of school (n = 53), family (n = 12) and multi-component (n = 20) programmes. Meta-analysis was not performed due to study heterogeneity. Most studies were conducted in North America. Risk of bias assessment revealed problems related to inappropriate unit of analysis, moderate to high attrition, selective outcome reporting and potential confounding. Certain generic psychosocial and life skills school-based programmes were effective in reducing alcohol use in youth. Most family-based programmes were effective. There was insufficient evidence to conclude that multiple interventions provided additional benefit over single interventions.
CONCLUSIONS:
In these Cochrane reviews, some school, family or multi-component prevention programmes were shown to be effective in reducing alcohol misuse in youths. However, these results warrant a cautious interpretation, since bias and/or contextual factors may have affected the trial results. Further research should replicate the most promising studies identified in these reviews and pay particular attention to content and context factors through rigorous evaluation.
Universal alcohol misuse prevention programmes for children and adolescents: Cochrane systematic reviews.
Foxcroft DR, Tsertsvadze A.
(2012)
AIMS:
Alcohol misuse by young people causes significant health and social harm, including death and disability. Therefore, prevention of youth alcohol misuse is a policy aim in many countries. Our aim was to examine the effectiveness of (1) school-based, (2) family-based and (3) multi-component universal alcohol misuse prevention programmes in children and adolescents.
METHODS:
Three Cochrane systematic reviews were performed: searches in MEDLINE, EMBASE, PsycINFO, Project CORK and the Cochrane Register of Controlled Trials up to July 2010, including randomised trials evaluating universal alcohol misuse prevention programmes in school, family or multiple settings in youths aged 18 years or younger. Two independent reviewers identified eligible studies and any discrepancies were resolved via discussion.
RESULTS:
A total of 85 trials were included in the reviews of school (n = 53), family (n = 12) and multi-component (n = 20) programmes. Meta-analysis was not performed due to study heterogeneity. Most studies were conducted in North America. Risk of bias assessment revealed problems related to inappropriate unit of analysis, moderate to high attrition, selective outcome reporting and potential confounding. Certain generic psychosocial and life skills school-based programmes were effective in reducing alcohol use in youth. Most family-based programmes were effective. There was insufficient evidence to conclude that multiple interventions provided additional benefit over single interventions.
CONCLUSIONS:
In these Cochrane reviews, some school, family or multi-component prevention programmes were shown to be effective in reducing alcohol misuse in youths. However, these results warrant a cautious interpretation, since bias and/or contextual factors may have affected the trial results. Further research should replicate the most promising studies identified in these reviews and pay particular attention to content and context factors through rigorous evaluation.
Uppdrag om förslag till försöksverksamhet med samordnare för barn och unga med funktionsnedsättning
Regeringen (S2012/4967/FST).
(2012)
Socialstyrelsen får i uppdrag att genomföra en kartläggning av landstingens användning av anlagsmedel för rådgivning och annat personligt stöd enligt lagen (1993:387) om stöd och service till vissa funktionshindrade (LSS). Socialstyrelsen ska även föreslå en försöksverksamhet med samordnare för barn och unga med funktionsnedsättning.
Vidare får Socialstyrelsen i uppdrag att genomföra en förstudie om hur information om samhällets stöd till barn med funktionsnedsättning på bästa sätt görs tillgänglig för målgruppen.
Uppdraget ska redovisas till Regeringskansliet (Socialdepartementet) senast den 18 januari 2013.
Socialstyrelsen får under 2012 använda högst 1 miljon kronor för att genomföra uppdraget.
Usability of a new electronic assistive device for community-dwelling persons with mild dementia
Meiland FJM, Bouman AIE, Sävenstedt S, Bentvelzen S, Davies RJ, Mulvenna MD, et al.
(2012)
Objective: To evaluate a newly developed integrated digital prosthetic, the COGKNOW Day Navigator (CDN), to support persons with mild dementia in their daily lives, with memory, social contacts, daily activities and safety. Methods: A user participatory method was applied in the development process, which consisted of three iterative 1-year cycles with field tests in Amsterdam, Belfast and Luleå. In the successive cycles 16, 14 and 12 persons with dementia and their carers participated. Data on usability were collected by means of interviews, observations, questionnaires, logging and diaries. The CDN prototype consists of a touch screen, a mobile device, sensors and actuators. Results: The evaluation showed that persons with dementia and carers valued the CDN overall as user-friendly and useful. Conclusions regarding the effectiveness of the system in daily life were limited due to insufficient duration of the testing period caused by delays in development and some instability of the final prototype. Conclusion: With the suggested adaptations, the CDN is expected to be a useful tool for supporting community-dwelling persons with mild dementia and their carers.
Upplevelsen av att vårda sin make/maka med demenssjukdom i hemmet. (C-uppsats)
Jonsson, A., & Rönnberg, M.
(2004)
Vad hjälper? Vägar till återhämtning från svåra psykiska problem
Topor, A.
(2004)
Vad hjälper? Vägar till återhämtning från svåra psykiska problem
Topor, Alain
(2004)
De flesta människor som drabbas av svåra psykiska problem återhämtar sig, helt eller delvis. Att återhämta sig betyder inte att man nödvändigtvis är fri från alla symtom utan kan även innebära att man kan hantera dem och leva ett acceptabelt liv. Bland läkare, vårdpersonal och även bland dem som själva har psykiska problem finns en utbredd pessimism om möjligheterna att återhämta sig. Men i dag har vi tillgång till forskningsresultat som motsäger föreställningar om de psykiska störningarna som varande livslånga, kroniska sjukdomar. Forskning visar att de flesta människor som exempelvis fått psykiatrins mest belastade diagnos – schizofreni – återhämtar sig. Vad hjälper människor med svåra psykiska problem att återhämta sig? Vad gör de själva, och vad kan andra – professionella, anhöriga, närstående – göra för att bidra till denna process? Boken resonerar kring professionalitet och vad ett återhämtningsinriktat professionellt arbete kan innebära. Återhämtning är en unik individuell process. Helt olika insatser kan bidra till återhämtningsprocessen för olika personer och för samma person i olika perioder. Den kan därför aldrig reduceras till en metod som kan tillämpas lika på flera patienter. Boken önskar förena individernas – brukarnas – erfarenhetsbaserade kunskap med kunskap från forskningen. Utgångspunkten är att människor återhämtar sig från svåra psykiska problem och att deras egna berättelser om återhämtningsarbetet erbjuder trovärdig kunskap. Boken vänder sig dels till brukare och närstående, dels till personal verksam inom psykiatri och socialtjänst. Den är också avsedd som kursbok för högskolestuderande inom områdena socialt arbete, psykologi, vård och medicin. Boken används dessutom som lärobok/komplement till cirkelmaterialet vid studiecirklar inom ramen för Återhämtningsprojektet (som drivs av Riksförbundet för Social och Mental Hälsa [RSMH], Forskningsstiftelsen Humlan och FoU-enheten vid SPO Psykiatrin Södra, Stockholms läns landsting) som i första hand löper under åren 2004 och 2005.Alain Topor är leg psykologi, fil dr och chef för FoU-enheten vid SPO Psykiatrin Södra inom Stockholms läns landsting. Han är även forskningschef på institutionen för socialt arbete, Stockholms universitet. Han har tidigare arbetat inom socialtjänst och psykiatri som familjebehandlare, behandlingsansvarig, handledare samt med forskning och utveckling inom socialtjänsten och psykiatrin. På Natur och Kultur har han tidigare utgivit Återhämtning från svåra psykiska störningar
Vardagens villkor för familjer med barn med funktionshinder – familjestöd
Bernehäll Claesson, I.
(2004)
This report is based on three studies within the Family Support Project (FAS-project). The first study focused on respite care service from three perspectives. The second study focused on families with children with brittle bones (osteogenesis imperfecta) and the third study focused on families with children with muscular diseases. Study two and three surveyed the families' opportunities to exert influence on and participate in the decision process. The aim of this dissertation is to highlight how families with children with disabilities experience daily life, what is working well and what is not working as well as desired. The aim is also to find out what areas the families experience as problematic and within what areas they need a better support and to demonstrate what can be done in the municipalities in order to facilitate for the families. For many years I have been working with projects concerning family support. The different projects have applied to families with children with disabilities and among other things to families with children with brittle bones and muscular di-seases. These diagnoses are mentioned as small and less known disability groups. The results from the studies show that many families have difficulties in receiving the support they need and demand, that they have difficulties to communicate with authorities and administrators and that the knowledge about different kinds of disabilities are lacking. This is one reason why these families have not received the understanding and support for their daily lifes as they should.
Vardagens villkor för familjer med barn med funktionshinder – familjestöd. (Licentiatavhandling i pedagogik), Individ omvärld och lärande/Forskning nr.23.
Bernehäll Claesson, I.
(2004)
This report is based on three studies within the Family Support Project (FAS-project). The first study focused on respite care service from three perspectives. The second study focused on families with children with brittle bones (osteogenesis imperfecta) and the third study focused on families with children with muscular diseases. Study two and three surveyed the families' opportunities to exert influence on and participate in the decision process. The aim of this dissertation is to highlight how families with children with disabilities experience daily life, what is working well and what is not working as well as desired. The aim is also to find out what areas the families experience as problematic and within what areas they need a better support and to demonstrate what can be done in the municipalities in order to facilitate for the families. For many years I have been working with projects concerning family support. The different projects have applied to families with children with disabilities and among other things to families with children with brittle bones and muscular di-seases. These diagnoses are mentioned as small and less known disability groups. The results from the studies show that many families have difficulties in receiving the support they need and demand, that they have difficulties to communicate with authorities and administrators and that the knowledge about different kinds of disabilities are lacking. This is one reason why these families have not received the understanding and support for their daily lifes as they should.
Welfare relationships : Voluntary organisations and local authorities supporting relatives of older people in sweden (Stockholm studies in politics).
Dahlberg, L.
(2004)
Sweden is often described as a country with a strong welfare state and little voluntary work. This is as would be expected according to substitution theory, in which extensive welfare systems are assumed to crowd out voluntary activity and thereby limit the potential for voluntary work – there is an inverse relationship between voluntary and statutory activity. A second perspective is welfare pluralism, which is siginified by a purposive duplication of activity by different actors resulting in increased choice for service users. A third perspective is offered by complementarity theory. In this theory, different actors are assumed to have different characteristics, strengths, and weaknesses, which make them suitable for performing different tasks.The purpose of the thesis is to examine the variation in welfare service provision by voluntary organisations and local authorities in Sweden. This includes determining whether there is a statistical association between voluntary and statutory service provision. The thesis also explores the interaction between voluntary organisations and local authorities, that is how they are related in terms of collaboration, competition, support, and influence, and the actors' own views on roles, responsibilities, motives etc. The thesis is based on two national surveys and on in-depth interviews. Questionnaires were sent to 358 Swedish voluntary organisations in 1999, and 365 organisations in 2002. At the same time points, 80 local authorities were also surveyed. In 2001, 55 representatives of voluntary organisations and local authorities were interviewed.Analysis of the surveys showed no negative relationship between voluntary and statutory service provision cross-sectionally or over time. This was true for both the total amount of activity and when considering individual services. In other words, no evidence for substitution processes was found. Although there was an increase in support for relatives in the period studied and a positive relationship between voluntary and statutory activity in 2002, no positive correlation was found within individual support activities. This means that voluntary and statutory activities tended to be of different kinds at a local level. Only rarely could users choose between different service providers, and the situation could not be characterised as indicative of welfare pluralism. Voluntary organisations and local authorities were described in terms of different characteristics by interviewees, as would be expected by complementarity theory. Nevertheless, there were overlaps in service provision, questioning the validity of complementarity theory with its emphasis on matching of characteristics and tasks. However, at a local level voluntary organisations and local authorities rarely carried out similar tasks. There is thus extensive complementarity at a local level. It is argued that this complementarity is due to the strong ideology that voluntary organisations should complement local authorities, rather than due to the different characteristics of the actors.
Whose empowerment and independence? A cross-national perspective on ‘cash for care’ schemes
Ungerson, C.
(2004)
Whose empowerment and independence? A cross-national perspective on ‘cash for care’ schemes.
Ungerson, C.
(2004)
Vänd dig hit! Guide för kommuner och landsting att kartlägga och utveckla sin första linjeverksamhet för psykisk hälsa hos barn och unga
Sveriges Kommuner och Landsting
(2012)
På många platser i Sverige saknas en tydlig första linje, den nivå som har i uppgift att
först ta emot barn och ungdomar som mår psykiskt dåligt eller deras familjer – oavsett
om problemet har psykologiska, medicinska, sociala eller pedagogiska orsaker.1
Bland
annat inom ramen för Psynk – psykisk hälsa barn och unga pågår såväl lokalt som nationellt
utvecklingsarbete för att förbättra situationen för barn som söker hjälp för någon
form av psykisk ohälsa eller relaterade problem.
Denna guide ska vara ett stöd för beslutsfattare i kommuner och landsting som vill
kartlägga sin första linje och hitta utvecklingsmöjligheter.
Guiden är indelad i två sektioner. Den första sektionen, Kapitel 1–4, beskriver vad
en första linje är och vad som karakteriserar en bra första linje, samt möjliga sätt att
organisera första linjen. Den andra sektionen, Praktisk del 1 och 2, innehåller praktiskt
stöd som kan hjälpa kommuner och landsting att beskriva sin modell och ger vägledning
kring möjliga sätt att organisera arbetet i framtiden.
Denna guide ingår i en serie publikationer som tas fram inom Psynk. Den kan läsas
fristående, men läses med fördel tillsammans med skrifterna "Rätt insatser på rätt nivå
för barn och ungdomar med psykisk ohälsa – en kunskapssammanställning" 2, "Värdet
av en god uppväxt – Sociala investeringar för framtidens välfärd" 3 samt "Slutrapport
från Modellområdesprojektet 2009–2011" 1. Vidare handledning, inspiration och material
återfinns på projektets hemsida www.skl.se/psynk eller kan fås genom kontakt med
det centrala projektkansliet på Sveriges Kommuner och Landsting i Stockholm.
Vänta inte! Guide för investeringar i tidiga insatser för barn och unga
Sveriges Kommuner och Landsting
(2012)
Working with parental substance misuse: dilemmas for practice
Taylor A, Kroll B.
(2004)
The impact of parental substance misuse on child welfare is now being increasingly recognized. Drug and alcohol problems feature in a substantial proportion of families where there are child-care concerns and raise issues about engagement, confidentiality, assessment and inter-agency practice. This article explores some of the dilemmas faced by social welfare professionals who work with substance misusing parents. Based on a qualitative analysis of 40 semi-structured interviews with a wide range of practitioners from both adult focused and child and family settings, in both the voluntary and statutory sector, a variety of emerging themes will be discussed and linked to those from other studies. The problems of working with denial, the tensions created by different agency objectives and protocols and the way in which children can often fall through gaps in services will be highlighted, as will the way in which some professionals have sought to resolve the dilemmas they encounter. This will then be used as a basis for beginning to look at constructive ways forward in relation to training, interprofessional and inter-agency communication and service delivery.
Working with parental substance misuse: dilemmas for practice.
Taylor A, Kroll B.
(2004)
The impact of parental substance misuse on child welfare is now being increasingly recognized. Drug and alcohol problems feature in a substantial proportion of families where there are child-care concerns and raise issues about engagement, confidentiality, assessment and inter-agency practice. This article explores some of the dilemmas faced by social welfare professionals who work with substance misusing parents. Based on a qualitative analysis of 40 semi-structured interviews with a wide range of practitioners from both adult focused and child and family settings, in both the voluntary and statutory sector, a variety of emerging themes will be discussed and linked to those from other studies. The problems of working with denial, the tensions created by different agency objectives and protocols and the way in which children can often fall through gaps in services will be highlighted, as will the way in which some professionals have sought to resolve the dilemmas they encounter. This will then be used as a basis for beginning to look at constructive ways forward in relation to training, interprofessional and inter-agency communication and service delivery.
Vård nära dig : Hemsjukvård med stöd av IT : En state-of-the-art-konferens med syfte att belysa dagens kunskap, morgondagens möjligheter och hur IT kan vara till nytta i vården : Rapport nr 7 från ett interaktivt seminarium inom ITHS-programmet 16 juni 20
Vårdalstiftelsen
(2004)
Vård och omsorg om äldre : Lägesrapport 2004 : Tema : Konjunkturrapporter för välfärdssverige
Bergh, A., Hellner, B. M., & Johansson, L.
(2004)
Vägen till personlig assistans
Bengtsson, Hans
(2004)
Äldres levnadsförhållanden 1988-2002 : Hälsa, funktionsförmåga och vård- och omsorgsmönster
Malmberg, B., & Sundström, G.
(2004)
Approaches to needs assessment in children’s services
Ward, Harriet
(2002)
Examining the assessment of need in children's services this book addresses the full spectrum of practice, policy and research developments in the field. The contributors include leading academics, policy makers and senior practitioners who generate a broad-based holistic approach to the assessment of children in need. They show how needs assessment in children's services can be used to tackle problems such as low achievement, mental ill-health and social exclusion at both individual and strategic levels.
Approaches to the Assessment of Need in Children's Services will enable service managers and practitioners to respond effectively to the increasing pressure to monitor outcomes and effectiveness in child care work, and to improve and coordinate children's welfare service provision at individual and community levels and provides an indispensable overview and analysis for anyone working or studying in child welfare and social care
Att bo och vårdas hemma : IT ger nya möjligheter till omsorg och boende : Rapport nr 1 från ett interaktivt seminarium inom ITHS-programmet.
Vårdalstiftelsen
(2002)
Combining informal care and work: supporting carers in the workplace
Arksey H.
(2002)
The UK Government is concerned that women and men who care for disabled or sick relatives, or elderly people, and who also wish to take part in paid work should have increased opportunities to do so. However, many informal carers find combining work and care difficult; some may 'choose' to give up paid employment completely. The present paper draws on the findings from two projects to explore the extent to which the needs of employees with caring responsibilities are supported in the workplace. The two projects examined evidence from a study of informal carers assessed under the 1995 Carers Act, identified the difficulties which they face in their workplace and observed the strategies which they developed to help sustain the two roles. From this, a model of support for working carers was developed which includes leave policies, carer-friendly working arrangements, access to a (private) telephone, and supportive line managers and co-workers. This support model was tested on the employment policies of 13 employers to see how 'carer-friendly' they were. Most of the organisations studied were able to provide appropriate support for carers identified in the model. Questions were then raised about different aspects of carer-friendly working arrangements, including whether carers should receive any special treatment that is not available to their colleagues, the role of line managers, and the relationship between seniority and opportunities to combine work and care.
Fosterbarn ur ett könsperspektiv
Andersson, G.
(2002)
Barns erfarenheter av separationer och placeringar utanför hemmet får vanligen så stor plats att de skymmer ålders och köns skillnader, vilket uppmärksammas i denna artikel. Som en del av ett större forsknings projekt granskas skillnader mellan 10-11 åriga pojkars och flickors problem.
Informal Caregiving and Retirement Timing among Men and Women: Gender and Caregiving Relationships in Late Midlife
Dentinger E, Clarkberg M.
(2002)
Informal caregiving, or the provision of unpaid, voluntary care to elderly or disabled family and friends, is an increasingly common experience for both men and women in late midlife. The authors examine the ways in which informal caregiving influences the transition to retirement and how this relationship is shaped by gender. Our data are 763 pension-eligible men and women in the 1994-1995 Cornell Retirement and Well-Being Study. Results from discrete-time event history analyses indicate that certain types of caregiving shape the timing of retirement but that the association depends on the relationship between caregiver and care recipient and is fundamentally moderated by gender. For example, wives caring for their husbands have retirement odds 5 times greater than women who are not caregivers, whereas husbands caring for their wives are substantially slower to retire. Our evidence suggests that in this sample, caregiving responsibilities lead to increased sex role-typical employment behavior in late midlife.
Innvandring og innvandrere 2002. Statistiske analyser nr 50
Lie, B.
(2002)
Long-term effects of a group support program and an individual support program for informal caregivers of stroke patients: which caregivers benefit the most?
van den Heuvel ET, Witte LP, Stewart RE, Schure LM, Sanderman R, Meyboom-de Jong B.
(2002)
In this article, we report the long-term outcomes of an intervention for informal caregivers who are the main provider of stroke survivors' emotional and physical support. Based on the stress-coping theory of Lazarus and Folkman two intervention designs were developed: a group support program and individual home visits. Both designs aimed at an increase in caregivers' active coping and knowledge, reducing caregivers' strain and improving well-being and social support. Caregivers were interviewed before entering the program, and 1 and 6 months after completion of the program. After 6 months, 100 participants remained in the group program, 49 in the home visit program, and 38 in the control group. Multiple stepwise regression analysis was used to determine the effects of the interventions. In the long-term, the interventions (group program and home visits together) contributed to a small to medium increase in confidence in knowledge and the use of an active coping strategy. The amount of social support remained stable in the intervention groups, whereas it decreased in the control group. The same results were found when only the group program was compared with the control group. However, no significant differences between the home visit group and the participants in the group support program were found. Younger female caregivers benefit the most from the interventions. They show greater gains in confidence in knowledge about patient-care and the amount of social support received compared with other caregivers.
Optimizing treatment effects for substance-abusing women with children: an evaluation of the Susan B. Anthony Center.
Sowers KM, Ellis RA, Washington TA, Currant M.
(2002)
Substance abuse among women is a significant national problem. Historically, the treatment of this condition has been difficult, but it has been even more challenging when the woman in treatment has had children. This article reports the results of an evaluation of the Susan B. Anthony Center (SBAC), a residential treatment facility for recovering women and their children. Researchers studied outcomes for 41 women who were first treated in a detoxification program, then referred to either SBAC or a day treatment program. Although random assignment to groups was not possible, the groups were comparable on four major demographic variables. The SBAC groups reported better outcomes on three psychosocial variables: abstinence, arrest, and employment. They improved their total score on the Functional Assessment Rating Scale substantially more than did the comparison group. Consumer satisfaction was also high.
Optimizing treatment effects for substance-abusing women with children: an evaluation of the Susan B. Anthony Center.
Sowers KM, Ellis RA, Washington TA, Currant M.
(2002)
Substance abuse among women is a significant national problem. Historically, the treatment of this condition has been difficult, but it has been even more challenging when the woman in treatment has had children. This article reports the results of an evaluation of the Susan B. Anthony Center (SBAC), a residential treatment facility for recovering women and their children. Researchers studied outcomes for 41 women who were first treated in a detoxification program, then referred to either SBAC or a day treatment program. Although random assignment to groups was not possible, the groups were comparable on four major demographic variables. The SBAC groups reported better outcomes on three psychosocial variables: abstinence, arrest, and employment. They improved their total score on the Functional Assessment Rating Scale substantially more than did the comparison group. Consumer satisfaction was also high.
"Anhörig 300" : Utvärdering av närståendestöd i kronobergs län 1999-2001 : "Jag vågar inte planera mer än en kvart i taget"
Albin, B., & Siwertsson, C.
(2002)
"The hidden client"--women caring for husbands with COPD: Their experience of quality of life.
Bergs, D.
(2002)
A Feasibility Study of Enhanced Group Triple P — Positive Parenting Program for Parents of Children with Attention-deficit/Hyperactivity Disorder
Hoath, F. E., Hoath, F. E., Sanders, M. R., & Sanders, M. R.
(2002)
The aim of this randomised controlled trial was to examine the efficacy of an Attention-deficit/ hyperactivity Disorder (ADHD)-specific, Enhanced (Level 5) Group Triple P intervention. Twenty families with a child with clinically diagnosed ADHD aged between 5 and 9 years participated. Families were randomly assigned to either an enhanced intervention group (Enhanced Group Triple P; EGTP) or a wait list (WL) condition. Using parent reports of child behaviour, parenting practices and family functioning in addition to teacher reports of child behaviour in the school environment, parents in the EGTP condition reported significant reductions in intensity of disruptive child behaviour problems, aversive parenting practices and increases in parental self-efficacy when compared to the WL condition. Parents' reports at 3-month follow-up indicated the gains in child behaviour and parenting practices achieved at post-intervention were maintained.
A life course approach to chronic disease epidemiology: conceptual models, empirical challenges and interdisciplinary perspectives
Kuh, D., & Ben-Shlomo, Y.
(2002)
Over the last few years there has been increasing interest in conceptualizing disease aetiology within a life course framework.1,,2 This approach is not new to Public Health or unique to epidemiology (see below). However, its current resonance and interest within epidemiology reflects the challenging theoretical framework this approach provides. This issue of the International Journal of Epidemiology has several papers with a 'life course theme'. This accompanying editorial is intended to highlight what we believe are the key conceptual issues around life course epidemiology. We have chosen to use examples from chronic disease epidemiology, but this approach is also applicable within the context of infectious diseases3 and wider notions of health and wellbeing.4
We have defined a life course approach to chronic disease epidemiology1 as the study of long-term effects on chronic disease risk of physical and social exposures during gestation, childhood, adolescence, young adulthood and later adult life. It includes studies of the biological, behavioural and psychosocial pathways that operate across an individual's life course, as well as across generations, to influence the development of chronic diseases.
Adverse behavioral and emotional outcomes from child abuse and witnessed violence
Johnson, R. M., Kotch, J. B., Catellier, D. J., Winsor, J. R., Dufort, V., Hunter, W., & Amaya-Jackson, L.
(2002)
This article examines mental health outcomes of children who have witnessed violence in their social environment and/or have been physically abused. Participants (n = 167) come from a longitudinal study on child maltreatment. Outcomes—including depression, anger, and anxiety—are measured by the Child Behavior Checklist and the Trauma Symptom Checklist for Children. The authors used adjusted multivariate analyses to test the statistical significance of associations. The majority of children were female (57%) and non-White (64%). One third had been physically victimized; 46% had witnessed moderate-high levels of violence. Results confirm that children are negatively affected by victimization and violence they witness in their homes and neighborhoods. Victimization was a significant predictor of child aggression and depression; witnessed violence was found to be a significant predictor of aggression, depression, anger, and anxiety. Implications will be discussed.
Adverse, childhood experiences, alcoholic parents, an later risk of alcoholism and depression
Anda, RF., Whitfield, CL., Felitti, VJ., Chapman. D., Edwards, VJ., Dube, SR., & Williamson, DF.
(2002)
Abstract
OBJECTIVE:
The study examined how growing up with alcoholic parents and having adverse childhood experiences are related to the risk of alcoholism and depression in adulthood.
METHODS:
In this retrospective cohort study, 9,346 adults who visited a primary care clinic of a large health maintenance organization completed a survey about nine adverse childhood experiences: experiencing childhood emotional, physical, and sexual abuse; witnessing domestic violence; parental separation or divorce; and growing up with drug-abusing, mentally ill, suicidal, or criminal household members. The associations between parental alcohol abuse, the adverse experiences, and alcoholism and depression in adulthood were assessed by logistic regression analyses.
RESULTS:
The risk of having had all nine of the adverse childhood experiences was significantly greater among the 20 percent of respondents who reported parental alcohol abuse. The number of adverse experiences had a graded relationship to alcoholism and depression in adulthood, independent of parental alcohol abuse. The prevalence of alcoholism was higher among persons who reported parental alcohol abuse, no matter how many adverse experiences they reported. The association between parental alcohol abuse and depression was accounted for by the higher risk of having adverse childhood experiences in alcoholic families.
CONCLUSIONS:
Children in alcoholic households are more likely to have adverse experiences. The risk of alcoholism and depression in adulthood increases as the number of reported adverse experiences increases regardless of parental alcohol abuse. Depression among adult children of alcoholics appears to be largely, if not solely, due to the greater likelihood of having had adverse childhood experiences in a home with alcohol-abusing parents.
”Patientens rätt till fast vårdkontakt”. Meddelandeblad Nr 9 2012
Socialstyrelsen
(2012)
”Patientens rätt till fast vårdkontakt”. Meddelandeblad Nr 9 2012.
Socialstyrelsen
(2012)
5.98 Million
Ghafour, H.
(2012)
A conceptual framework for examining the promise of the NORC program and Village models to promote aging in place
Greenfield , E. A.,
(2012)
A growing paradigm shift emphasizes efforts to promote aging in place not only by helping aging individuals and families, but also by addressing and engaging communities. This paper explores the idea of developing community supports for aging in place by examining two models that incorporate this approach into practice: Naturally Occurring Retirement Community Supportive Service Programs (NORC programs) and Villages. Drawing on research regarding social–relational aspects of communities and later-life health and well-being, we present an integrative conceptual framework positing three categories of activities and services (civic engagement and empowerment activities; social relationship building activities; services to enhance access to resources)–as well as the initial outcomes and intermediate outcomes–through which the NORC program and Village models potentially achieve their long-term goal of promoting aging in place. Based on this framework, we conclude with directions for future research on community initiatives that support aging in place.
Unga människor med rörelsehinder – förankring, marginalisering och social exkludering. Avhandling i socialt arbete
Dag, Munir
(2006)
The aim of the thesis was to describe the specific barriers young people with disabilities experience in their ambition to get a job. The aim was also to investigate how these young people's social and economic situation has been affected by their disability.The results are based on two reports: one qualitative, consisting of interviews with 12 individuals with physical disabilities, and one quantitative in the form of a questionnaire answered by 706 persons. In the case of the questionnaire, the response rate was 48 per cent. Both reports are based on the same criteria, namely, that the respondents should have a physical disability, be 20–35 years of age and be participating in some form of employment policy program.The results from both studies show that individuals with physical disabilities encounter different types of barriers on the labour market, which can be categorised as being either at the individual level or at the social level. The barriers at the individual level are low education, long-term unemployment, grave physical disability and lack of work experience. The barriers identified at the social level are primarily poorly adapted workplaces, a too high working pace, employers' negative attitudes, insufficient knowledge of the competence of disabled persons and an overly generous social welfare system. All these factors constitute a direct obstacle to employing persons with a physical disability.The results from the interview study show that the respondents have few social relations. The majority of the respondents have social intercourse solely with family members or parents. Most of the respondents in the questionnaire study state that they have frequent social relations with friends and acquaintances. Both the interview study and the questionnaire study reveal that the respondents' financial position has worsened as a result if their physical disability.Conclusions that can be drawn from this thesis are that young people with physical disabilities encounter different barriers in their attempts to get a job and to maintain social relations. Based on the results, some of the respondents can be regarded as being socio-economically marginalised
Unga vuxna med en historia av uppförandestörning. – En långtidsuppföljning med ett salutogent och ekologiskt perspektiv
Olsson, Martin
(2006)
Denna avhandling innehåller en huvudstudie och en delstudie. Syftet med huvudstudien var att följa upp en grupp ungdomar som hade blivit diagnostiserade med uppförandestörning (n=351) i det unga vuxenlivet. Delstudiens syfte var att ifrågasätta och klargöra frågeformuläret KASAM-29 och dess förhållande till den salutogena teorin. I avhandlingen användes olika utfallsvariabler och utfallsmått, vilka även diskuterades. Två perspektiv på utfall användes, ett salutogent och ett ekologiskt.
Det salutogena perspektivet kunde användas först efter att delstudien var klar. Delstudien visade att KASAM-29 är ett reliabelt och validt mätinstrument. Dessutom visade delstudien att huvudbegreppet i den salutogena teorin Känslan av sammanhang bör betraktas som ett holistiskt begrepp.
Huvudstudien följde upp 290 ungdomar i deras unga vuxenliv (medelålder 21 år). Utifrån det salutogena perspektivet, KASAM-29, hade ungefär hälften männen (43 %) och kvinnorna (56 %) ett negativt utfall. Det ekologiska perspektivet bestod av sju enskilda variabler: låg utbildningsnivå, transfereringsinkomst, hög symtombelastning, missbruk, kriminalitet och dygnsvård för vuxna. Genom att kombinera dessa enskilda variabler, hade ungefär två tredjedelar av männen (68-70 %) och ungefär hälften av kvinnorna ett negativt utfall i vuxenlivet. Dessa utfallsmått kunde inte substantiellt prediceras av variabler från deras medicinska patient journal.
Huvudstudien är en av få nationella och internationella långtidsuppföljningar bestående av ett kliniskt urval av ungdomar diagnostiserade med uppförandestörning. Studien visar att det är möjligt att genomföra denna typ av studier med ett litet bortfall. Individer diagnostiserade med uppförandestörning har en förhöjd risk för ett problematiskt vuxenliv. Vuxenlivet kan beskrivas på många olika sätt. Men slutsatsen är att utfallet i vuxenlivet beror på valet av utfallsmått. För att besvara frågan hur stor del av ungdomarna som hade ett negativt utfall i vuxenlivet måste utfallsmåttet först specificeras. Specificeringen måste klargöra utfallsmåttets uppbyggnad och definition. Först därefter kan frågan verkligen besvaras.
Use of safe-laser access technology to increase head movement in persons with severe motor impairment: a series of case reports
Fager, S., Beukelman, D., Karantounis, R., & Jakobs, T.
(2006)
The purpose of this article is to describe the impact of an intervention involving safe-laser pointing technology on six persons with locked-in syndrome. When these individuals were invited to participate in this project (4 weeks to 18 years post onset), none were able to speak and none were able to access an augmentative and alternative communication (AAC) device. All communicated using eye movements (e.g., looking up or down), eye blinks, dependent scanning strategies with eye movement signals, or eye linking. Following intervention with the Safe-Laser Access System, three of the six participants developed head movement sufficient to control AAC technology. Two participants continue to develop head control; however, their progress has been slowed by repeated illnesses. One participant has discontinued his involvement with the project because of medical and psychological concerns. These six participants represent consecutive referrals to the project.
Using the ICF in goal setting: Clinical application using Talking Mats
Bornman J, Murphy J.
(2006)
Purpose. The purpose of this article is to suggest how Talking Mats® can be used in accordance with the International Classification of Functioning, Disability and Health (ICF) proposed by the World Health Organisation (WHO) when setting intervention goals.
Method. A theoretical framework for using Talking Mats® when setting intervention goals in accordance with the ICF is provided.
Conclusions. An international system such as the ICF offers a conceptual framework that can be used to set appropriate goals for intervention. Talking Mats® on the other hand can be seen as the strategy through which individuals can be empowered to participate in this goal-setting activity.
Utveckling av anhörigstöd i Jämtlands län.
Lindmark, S.
(2006)
Vad är psykiskt funktionshinder? Nationell psykiatrisamordning ger sin definition av begreppet psykiskt funktionshinder
Nationell Psykiatrisamordning
(2006)
Statens offentliga utredningar
Vem ska ta hand om mamma? : Tema : Att vara anhörig
Johansson, L.
(2006)
Veteranradio [ljudupptagning] : Anhöriggrupper
Utbildningsradion
(2006)
Who knows best? Evidence-based practice and the service user contribution
Glasby J., P. B.
(2006)
This paper reviews the assumptions underlying traditional medical research and critiques the concept of 'evidence-based practice'. In particular, it identifies and counters three basic tenets of this approach: the alleged need for objectivity in research, the notion of hierarchies of evidence and the primacy of systematic reviews. Instead, the paper argues for a new emphasis on 'knowledge-based practice', recognizing that the practice wisdom of health and social care practitioners and the lived experience of service users can be just as valid a way of knowing the world as formal research.
Widowhood and race
Elwert, F., & Christakis, N. A.
(2006)
The health effects of marital status are frequently cited in the current debate on marriage promotion, but little is known about how marital health effects vary across groups. This article assembles the largest properly longitudinal and nationally representative dataset of elderly married couples in the United States (N = 410,272 couples) and provides strong evidence that the "widowhood effect"—how the death of a spouse increases the mortality of the survivor-varies substantially by race. The authors find that whites married to whites suffer a large and enduring widowhood effect. By contrast, blacks married to blacks do not suffer a detectable widowhood effect, possibly because they manage to extend the survival advantage of marriage into widowhood. For racially intermarried men, wife's race appears to dominate the size and presence of the widowhood effect entirely, regardless of husband's own race. These results likely arise from differences in the marital cultures and marital contexts of black and white couples. More generally, these results demonstrate that the health effects of social ties depend on the individual attributes of the actors they connect.
Work/family reconciliation, equal opportunities and social policies. The interpretation of policy trajectories at the EU level and the meaning of gender equality
Lewis, J.
(2006)
Vuxna med förvärvad traumatisk hjärnskada – omställningsprocesser och konsekvenser i vardagslivet. En studie av femton personers upplevelser och erfarenheter av att leva med förvärvad traumatisk hjärnskada
Strandberg, Thomas
(2006)
The overall purpose of this study is to illuminate the changeover process experienced by individuals who as adults acquired a traumatic brain injury (TBI), to increase the knowledge and the understanding of this process, and describe the meaning of support in every day life.Persons who acquired a TBI as adults were administered a semi-structured interview covering six areas: consequences of TBI, family and social networks, working life and occupation, life-changes, support from society and everyday life. The interviews were qualitative and in-depth. A total of 15 informants participated, aged between 19-53 years when injured. Data were structured and underwent two phases of analysis. In the first phase, data underwent latent content analysis, underpinned by a hermeneutic approach, and in the subsequent phase, reanalysed within a framework derived from the theory of social recognition.Findings from the first phase of inductive analysis elicited key themes: (i) the meaning of care, a question of formal and/or informal support; (ii) the meaning of action, a question of activity versus inactivity; (iii) autonomy, a question of dependence versus independence; (iv) social interaction, a question of encounter and/or treatment; (v) the theme of changes, a question of process versus stagnation; and (vi) emotions, an oscillation between hope versus hopelessness. After the construction of the six themes each of them were, through a discursive analysis, connected with theories, earlier studies in the field of brain injuries and important interview quotations from the empirical material. During this phase, an interest developed to study the material from a new theoretical point of view. The second phase of analysis therefore involved the development of a framework derived from Honneth's (1995) theory of social recognition. The central construct of 'recognition' was analysed from three different dimensions proposed by Honneth: the individual dimension, the legal dimension, the value dimension. Using this framework, the data were reanalysed. The scientific term for this process of re-contextualisation and re-description of data is abduction inference.Reported consequences were negative as well as positive. Significant others (e.g. next of kin) had an important function as a driving force for training and preparation for life-situation after injury. A majority of the informants were satisfied with support from society, such as hospital-care, rehabilitation and community support. Such support, initially, proceeded without problems but as time passed, the responsibility shifted to the person with TBI to take the initiative in arranging longer-term services. Long-term support which addresses physical, cognitive as well as psychosocial consequences of the TBI is important for outcomes. The majority of the informants had difficulties in returning to working life after the injury. The outcomes and recovery seemed to be a prolonged process, probably never ending, but which gradually over time becomes integrated as a part of life. The informants gave varying accounts of the extent to which they experienced social recognition.
Are Children of Holocaust Survivors Less Well- Adapted? A Meta-Analytic Investigation of Secondary Traumatization
Van IJzendoorn, M. H.
(2003)
H. Keilson (1979) coined the term "sequential traumatization" for the accumulation of traumatic stresses confronting the Holocaust survivors before, during, and after the war. A central question is whether survivors were able to raise their children without transmitting the traumas of their past. Through a series of meta-analyses on 32 samples involving 4,418 participants, we tested the hypothesis of secondary traumatization in Holocaust survivor families. In the set of adequately designed nonclinical studies, no evidence for the influence of the parents' traumatic Holocaust experiences on their children was found. Secondary traumatization emerged only in studies on clinical participants, who were stressed for other reasons. A stress-diathesis model is used to interpret the absence of secondary traumatization in nonclinical offspring of Holocaust survivors.
Are the ICF activity and participation dimensions distinct?
Jette AM, Haley SM, Kooyoomjian JT.
(2003)
Objective: To test the hypothesis that distinct Activity and
Participation dimensions of the International Classification
of Functioning, Disability, and Health could be identified
using physical functioning items drawn from the Late Life
Function and Disability Instrument.
Design: A cross-sectional, survey design was employed.
Subjects: The sample comprised 150 community-dwelling
adults aged 60 years and older.
Methods: Exploratory factor analysis was used to identify
interpretable dimensions underlying 48 physical functioning
questionnaire items.
Results: Findings revealed that one conceptual dimension
underlying these physical functioning items was not suffi-
cient to adequately explain the data (X2 = 2383; p 0.0001).
A subsequent solution produced 3 distinct, interpretable
factors that accounted for 61.1% of the variance; they were
labeled: Mobility Activities (24.4%), Daily Activities
(24.3%), and Social/Participation (12.4%). All 3 factors
achieved high internal consistency with coefficient alphas of
0.90 or above.
Conclusion: Within physical functioning, distinct concepts
were identified that conformed to the dimensions of Activity
and Participation as proposed in the ICF. We believe this is
the first empirical evidence of separate Activity and
Participation dimensions within the International Classification
of Functioning, Disability, and Health classification.
Att leva med en demenssjuk person : Anhörigas upplevelse av sina vardagliga aktiviteter. (D-uppsats)
Andersson, M.
(2003)
Att möta det oväntade – tidigt föräldraskap till barn med Downs Syndrom.
Riddersporre, B.
(2003)
Avhandlingens syfte är att genom en empirisk undersökning öka förståelsen av tidigt föräldraskap till barn med Downs syndrom. Jag utgår ifrån föräldrarnas livsvärld och utvecklar ett medföljande arbetssätt. Tio familjer med nyfödda barn med Downs syndrom följs genom regelbundna hembesök under det första året med barnet. Tillsammans med en medarbetare samtalar jag med föräldrarna, lyssnar på deras egna berättelser samt observerar och upplever det som händer mellan föräldrar och barn. Arbetssättet ger en möjlighet att följa olika processer i familjen. Täta beskrivningar och återgivningar av föräldraberättelser från 125 besök utgör det empiriska material som analyseras och tolkas. Tolkningen används för att skapa begrepp som i sin tur kan medge en generalisering utanför den undersökta gruppen. Dessa begrepp förs samman till ett sätt att förstå föräldraskap till barn med Downs syndrom. Ett centralt tema i undersökningen är föräldrarnas olika sätt att förhålla sig till motstridiga känslor inför såväl barnet som föräldraskapet och relationer till släkt, vänner och professionella stödpersoner. Men utgångspunkt från de förhållningssätt som identifierats i undersökningen skapas en enkel typologi. Föräldrar med ett idealiserande förhållningssätt ger positiva känslor och reaktioner företräde. När negativa eller problematiska aspekter dominerar beskriver jag föräldrarnas förhållningssätt som kämpande, medan de som undviker starka känslor generellt har ett vardagligt sätt att förhålla sig. Begreppen är direkt förankrade i empirin och därmed i föräldrarnas livsvärld. För att gestalta min personliga förståelse av föräldrarnas livsvärld gör jag dessutom, med utgångspunkt från empirin, s k narrativa rekonstruktioner, korta berättelser i skönlitterär form. Det som utmärker alla föräldrar, oavsett hur de hanterar sina motstridiga känslor, är att de försöker skydda relationen till barnet från allt för starka negativa reaktioner. Föräldrar behöver stöd från sina närstående men kan bli besvikna över att detta är otillräckligt. Beroendet flyttas delvis över på de professionella kontakterna vilka får en stor betydelse för utvecklingen av föräldrarollen. Idealiserande föräldrar uppfattar sig som väl behandlade av de professionella, de med ett vardagligt förhållningssätt är nöjda medan kämpande föräldrar ofta känner sig missförstådda och kränkta. Detta leder till frågan om i vilken utsträckning föräldrars eget förhållningssätt påverkar kvaliteten i det professionella bemötandet. Det sätt på vilket föräldraskapet speglas av personer i det privata respektive det professionella nätvetket får betydelse för utvecklingen av föräldraidentiteten.
Att möta det oväntade – tidigt föräldraskap till barn med Downs Syndrom. (Avhandling)
Riddersporre, B
(2003)
Avhandlingens syfte är att genom en empirisk undersökning öka förståelsen av tidigt föräldraskap till barn med Downs syndrom. Jag utgår ifrån föräldrarnas livsvärld och utvecklar ett medföljande arbetssätt. Tio familjer med nyfödda barn med Downs syndrom följs genom regelbundna hembesök under det första året med barnet. Tillsammans med en medarbetare samtalar jag med föräldrarna, lyssnar på deras egna berättelser samt observerar och upplever det som händer mellan föräldrar och barn. Arbetssättet ger en möjlighet att följa olika processer i familjen. Täta beskrivningar och återgivningar av föräldraberättelser från 125 besök utgör det empiriska material som analyseras och tolkas. Tolkningen används för att skapa begrepp som i sin tur kan medge en generalisering utanför den undersökta gruppen. Dessa begrepp förs samman till ett sätt att förstå föräldraskap till barn med Downs syndrom. Ett centralt tema i undersökningen är föräldrarnas olika sätt att förhålla sig till motstridiga känslor inför såväl barnet som föräldraskapet och relationer till släkt, vänner och professionella stödpersoner. Men utgångspunkt från de förhållningssätt som identifierats i undersökningen skapas en enkel typologi. Föräldrar med ett idealiserande förhållningssätt ger positiva känslor och reaktioner företräde. När negativa eller problematiska aspekter dominerar beskriver jag föräldrarnas förhållningssätt som kämpande, medan de som undviker starka känslor generellt har ett vardagligt sätt att förhålla sig. Begreppen är direkt förankrade i empirin och därmed i föräldrarnas livsvärld. För att gestalta min personliga förståelse av föräldrarnas livsvärld gör jag dessutom, med utgångspunkt från empirin, s k narrativa rekonstruktioner, korta berättelser i skönlitterär form. Det som utmärker alla föräldrar, oavsett hur de hanterar sina motstridiga känslor, är att de försöker skydda relationen till barnet från allt för starka negativa reaktioner. Föräldrar behöver stöd från sina närstående men kan bli besvikna över att detta är otillräckligt. Beroendet flyttas delvis över på de professionella kontakterna vilka får en stor betydelse för utvecklingen av föräldrarollen. Idealiserande föräldrar uppfattar sig som väl behandlade av de professionella, de med ett vardagligt förhållningssätt är nöjda medan kämpande föräldrar ofta känner sig missförstådda och kränkta. Detta leder till frågan om i vilken utsträckning föräldrars eget förhållningssätt påverkar kvaliteten i det professionella bemötandet. Det sätt på vilket föräldraskapet speglas av personer i det privata respektive det professionella nätvetket får betydelse för utvecklingen av föräldraidentiteten.
Att möta det oväntade. Tidigt föräldraskap till barn med Downs syndrom
Riddersporre, Bim
(2003)
Avhandlingens syfte är att genom en empirisk undersökning öka förståelsen av tidigt föräldraskap till barn med Downs syndrom. Jag utgår ifrån föräldrarnas livsvärld och utvecklar ett medföljande arbetssätt. Tio familjer med nyfödda barn med Downs syndrom följs genom regelbundna hembesök under det första året med barnet. Tillsammans med en medarbetare samtalar jag med föräldrarna, lyssnar på deras egna berättelser samt observerar och upplever det som händer mellan föräldrar och barn. Arbetssättet ger en möjlighet att följa olika processer i familjen. Täta beskrivningar och återgivningar av föräldraberättelser från 125 besök utgör det empiriska material som analyseras och tolkas. Tolkningen används för att skapa begrepp som i sin tur kan medge en generalisering utanför den undersökta gruppen. Dessa begrepp förs samman till ett sätt att förstå föräldraskap till barn med Downs syndrom. Ett centralt tema i undersökningen är föräldrarnas olika sätt att förhålla sig till motstridiga känslor inför såväl barnet som föräldraskapet och relationer till släkt, vänner och professionella stödpersoner. Men utgångspunkt från de förhållningssätt som identifierats i undersökningen skapas en enkel typologi. Föräldrar med ett idealiserande förhållningssätt ger positiva känslor och reaktioner företräde. När negativa eller problematiska aspekter dominerar beskriver jag föräldrarnas förhållningssätt som kämpande, medan de som undviker starka känslor generellt har ett vardagligt sätt att förhålla sig. Begreppen är direkt förankrade i empirin och därmed i föräldrarnas livsvärld. För att gestalta min personliga förståelse av föräldrarnas livsvärld gör jag dessutom, med utgångspunkt från empirin, s k narrativa rekonstruktioner, korta berättelser i skönlitterär form. Det som utmärker alla föräldrar, oavsett hur de hanterar sina motstridiga känslor, är att de försöker skydda relationen till barnet från allt för starka negativa reaktioner. Föräldrar behöver stöd från sina närstående men kan bli besvikna över att detta är otillräckligt. Beroendet flyttas delvis över på de professionella kontakterna vilka får en stor betydelse för utvecklingen av föräldrarollen. Idealiserande föräldrar uppfattar sig som väl behandlade av de professionella, de med ett vardagligt förhållningssätt är nöjda medan kämpande föräldrar ofta känner sig missförstådda och kränkta. Detta leder till frågan om i vilken utsträckning föräldrars eget förhållningssätt påverkar kvaliteten i det professionella bemötandet. Det sätt på vilket föräldraskapet speglas av personer i det privata respektive det professionella nätvetket får betydelse för utvecklingen av föräldraidentiteten.
Att vara anhörigvårdare : Fokusgrupper samtalar om dilemman, känslor och behov
Källtorp, O., & Uggla, C.
(2003)
Att vara anhörigvårdare : Fokusgrupper samtalar om dilemman, känslor och behov.
Källtorp, O. and C. Uggla
(2003)
Att växa mot alla odds. Från födelse till vuxenliv
Werner, E.E. & Smith, R.S.
(2003)
Barn vi bekymrar oss om
Druggli, May Britt
(2003)
Författaren belyser i boken sambandet mellan de vuxnas förhållningssätt, pedagogens handlande och de avvikande beteendena som barn kan uppvisa i förskolan eller i skolan. I ett nyskrivet avsnitt för den svenska utgåvan behandlar Hans Bengtsson samarbetet med socialtjänsten och de ansvars- och sekretessregler som gäller.
Barnperspektiv som ideologiskt eller metodologiskt begrepp
Halldén, Gunilla
(2003)
Begreppet barnperspektiv är mångtydigt. Det används som ett ideologiskt begrepp med stor retorisk kapacitet och det används i vetenskapliga sammanhang som ett metodologiskt begrepp. Artikeln diskuterar olika innebörder som kan ges åt begreppet barnperspektiv och sätter det i relation till aktuell barndomsforskning. En diskussion förs också om hur barnperspektiv kan diskuteras i relation till ett empiriskt material med barns texter som ställer frågor om hur man ska transkribera och citera ur texten. Det väcker också frågor om vilken kontext som ska utgöra bakgrund för analysen. Sättet att hantera dessa frågor är beroende av etiska ställningstaganden och av de frågeställningar och det teoretiska perspektiv som styr analysen. Artikeln argumenterar för vad som utgör ett barnperspektiv i just denna studie nämligen att utgå från barns utsagor, men i tolkningen ställa dessa utsagor i relation till diskurser om barndom. Barnperspektiv blir då både att fånga barns röster och att tolka dem som uttryck för ett diskursivt sammanhang. Barnperspektiv handlar om vilken plats barn ges i vårt samhälle, vilka generella erfarenheter som det ger barn och på vilket sätt barnen uttrycker dessa erfarenheter. Barnperspektiv blir då något utöver att återge barns perspektiv på olika fenomen.
Behaviour style and interaction between seven children with multiple disabilities and their caregivers
Wilder, J. and M. Granlund
(2003)
Introduction. Recent studies show that the existing interaction patterns of children with multiple disabilities should be taken into consideration when planning communication interventions. For children with disabilities, it is especially important that the partner in interaction is sensitive and well aware of the importance of a qualitatively successful interaction. Wilder (unpublished report) found that the behaviour style of 30 children with multiple disabilities was more related to the caregiver-perceived interaction than the communicative skills and functional abilities of the children. This study inductively explored the caregivers' perceptions of interaction within seven caregiver-child dyads. The research questions were: How do the caregivers perceive the interaction? How do the caregivers perceive the children's behaviour style to be related to the interaction with the caregivers? Method. The children were selected individually from the participants in Wilder (unpublished report) depending upon the responses the caregivers had given about the children's self-regulation and reactivity in the Carolina Record of Individual Behaviour questionnaire. The study was undertaken by means of home visits where the caregivers participated in an interview asking about their strategies for interaction, how they perceived the roles of the children and their own roles in interaction, the caregivers' opinion of what an interaction constituted of and the caregivers' aims and aspiration for interaction. The data analysis was performed by meaning concentration and categorization through a pendulum between the parts and the entirety of the interviews. In this way, hermeneutics and thematic analysis were both being practised. Results. The results of the interviews are presented as a model with categorizations as a network. The categorizations reflect the system of themes that permeate how the caregivers perceived interaction in the dyad. The themes are: sharing of experience, successful interaction, role of the child, role of the caregiver, interaction methods, obstacles and facilitators and aims and aspirations. Discussion. The caregivers perceived their own role in interaction to be of a sensitive leading kind. The caregivers lead the interaction by using their knowledge about the children's usual way of interacting, the children's behaviour styles, functional abilities, the children's current mood and situation as well as the whole context. They monitored the interaction such that, throughout an interaction sequence, the caregivers always tried to optimize the interaction between the parties in the dyad. The behaviour style was a background factor that the caregivers had knowledge of and scanned in their everyday turn taking. Although there were differences in the children's behaviour styles, the caregivers discussed the same themes in the interviews. The behaviour style became a facilitator for the whole interaction, forced the interaction in certain directions and made the interaction more complete with turn taking of different kinds from both parties. The findings show that it is imperative to see caregivers as experts on their children and to make them assertive in this in relation to professionals. Furthermore, as a successful interaction can boost the development of children, it is essential to direct interventions to the everyday interaction in caregiver-child dyads.
Brief report: Behavioral adjustment of siblings of children with autism.
Hastings RP.
(2003)
Existing research studies have shown mixed results relating to the impact upon children of having a sibling with a disability. However, siblings of children with autism may be more at risk than siblings of children with other disabilities. In the present study, data were gathered on 22 siblings of children with autism. These children were rated by their mothers as having more behavior problems and fewer prosocial behaviors than a normative sample. Analysis of variables predicting sibling behavioral adjustment revealed that boys with siblings who have autism, and also those younger than their sibling with autism, engaged in fewer prosocial behaviors. Psychological adjustment of mothers (stress) and the child with autism (behavior problems) were not predictive of sibling behavioral adjustment.
Burden in Schizophrenia Caregivers: Impact on Family Psychoeducation and Awerness of Patient Suicidality
McDonnell, G. Michael, Short, A. Robert, Berry, M. Christopher & Dyck, G. Dennis
(2003)
Family caregivers of persons with schizophrenia and other psychotic disorders experience high levels of burden. Although a number of patient and caregiver predictors of burden have been identified, little research has investigated the contributions of patient depression, suicidal ideation, and substance abuse. In addition, family psychoeducation interventions have reduced patient symptoms, as well as inpatient treatment utilization; however, it is not known whether or not these interventions reduce family burden. This study- investigated predictors of family burden and tested to what degree multiple family group treatment (MFGT), relative to a standard-care condition, was associated with reduced family burden. Participants were 90 outpatients with a diagnosis of schizophrenia or other psychotic disorders, and their caregivers who were enrolled in a 2 year psychoeducation intervention. The best set of predictors of burden, identified by stepwise linear regression, was young patient age, awareness of patient's suicidal ideation, and family resources. These variables accounted for 32% of the total variance in burden. Findings suggest that caregiver's awareness of patient's suicidal ideation; not patient's report of suicidal ideation; and that patient age not duration of the illness, were significant, independent predictors of burden. When compared to a standard-care condition over 2 years, MFGT did not reduce family caregiver burden. Discussions focus on the relationship between burden and its predictors, and possible reasons why MFGT did not decrease burden. Modifications are proposed that may increase the impact of MFGT.
Child witnesses to domestic violence: A meta-analytic review
Kitzmann, K. M., Gaylord, N. K., Holt, A. R., & Kenny, E. D.
(2003)
This meta-analysis examined 118 studies of the psychosocial outcomes of children exposed to interparental violence. Correlational studies showed a significant association between exposure and child problems (d = -0.29). Group comparison studies showed that witnesses had significantly worse outcomes relative to nonwitnesses (d = -0.40) and children from verbally aggressive homes (d = -0.28). but witnesses' outcomes were not significantly different from those of physically abused children (d = 0.15) or physically abused witnesses (d = 0.13). Several methodological variables moderated these results. Similar effects were found across a range of outcomes, with slight evidence for greater risk among preschoolers. Recommendations for future research are made, taking into account practical and theoretical issues in this area.
Children as Caregivers to Their Ill Parents with AIDS: Final Report
Bauman, L., & Draimin, B.
(2003)
Children caring for parents with mental illness: perspectives of young carers, parents and professionals
Aldridge, Jo & Becker, Saul
(2003)
Little is known about the experiences of children living in families affected by severe and enduring mental illness. This is the first in-depth study of children and young people caring for parents affected in this way. Drawing on primary research data collected from 40 families, the book presents the perspectives of children (young carers), their parents and the key professionals in contact with them. Children caring for parents with mental illness makes an invaluable contribution to the growing evidence base on parental mental illness and outcomes for children. It:·[vbTab]is the first research-based text to examine the experiences and needs of children caring for parents with severe mental illness;·[vbTab]provides the perspectives of children, parents and key professionals in contact with these families;·[vbTab]reviews existing medical, social, child protection and young carers literatures on parental mental illness and consequences for children; ·[vbTab]provides a chronology and guide to relevant law and policy affecting young carers and parents with severe mental illness;·[vbTab]makes concrete recommendations and suggestions for improving policy and professional practice;·[vbTab]contributes to the growing evidence base on parental mental illness and outcomes for children and families.
Children exposed to domestic violence and child abuse: Terminology and taxonomy
Holden, G. W.
(2003)
Three definitional issues regarding children exposed to domestic violence are examined. First, the multiple ways in which a child can be exposed to violence is discussed. A taxonomy of 10 types of exposure is proposed. Nine key characteristics of domestic violence, as they relate to children and children's exposure, are then outlined. The third issue addressed concerns why children who are exposed to domestic violence can be considered victims of child maltreatment. These children, by nature of their experience in the home, are psychologically maltreated and are also at high risk for physical abuse and some risk for sexual abuse. Empirical questions concerning these definitions and taxonomies and their interrelations are discussed.
Children of Mothers with Serious Substance Abuse Problems: An Accumulation of Risks.
Conners NA, Bradley RH, Mansell LW, Liu JY, Roberts TJ, Burgdorf K, et al.
(2003)
This study examines the life circumstances and experiences of 4084 children affected by maternal addiction to alcohol or other drugs. The paper will address the characteristics of their caregivers, the multiple risk factors faced by these children, their health and development, and their school performance. Data were collected from mothers at intake into 50 publicly funded residential substance abuse treatment programs for pregnant and parenting women. Findings from this study suggest that children whose mothers abuse alcohol or other drugs confront a high level of risk and are at increased vulnerability for physical, academic, and social-emotional problems. Children affected by maternal addiction are in need of long-term supportive services.
Common Questions about AAC Services in Early Intervention
Cress, C. J., & Marvin, C. A.
(2003)
Children and adults with developmental delays have benefited from the use of augmentative and alternative
communication (AAC) systems to develop language skills necessary for more generative and functional communication.
Beginning communicators however, have historically been considered too young or too pre-linguistic
and therefore have not been introduced to AAC systems until behaviors, thought to be prerequisites,
have been noted. Recent research and theories about early communication development have challenged this
traditional practice and broadened the scope of what is considered to be AAC. Practitioners and parents unfamiliar
with early AAC options may not recognize possible applications of communication strategies used with
typically developing children and older persons with developmental disabilities. AAC is applicable at all ages
for learning communication roles and behaviors as well as for functional communication for persons who do
not yet demonstrate clear referential symbol use. This article addresses nine questions that are frequently asked
about early introduction of AAC systems to children under 3 years of age. Rationales and strategies are provided
that can assist early interventionists and parents in considering AAC options for children at risk for being
unintelligible or non-speaking.
Communicative spontaneity of children with high support needs who use augmentative and alternative communication systems I: Classroom spontaneity, mode, and function
Carter, M.
(2003)
In the present study, the communicative spontaneity of 23 children with high support needs who used Augmentative and Alternative Communication (AAC) in a classroom setting was evaluated. In contrast to previous research, spontaneity was evaluated on a continuum rather than being treated as a binary variable. Spontaneity was found to be highly variable, but some students clearly lacked the range of spontaneity that would be associated with fully functional communication. Aided AAC systems were notably less spontaneous than signing or nonsymbolic communication. There was also evidence of systematic variation in spontaneity across pragmatic function, with instrumental functions being more spontaneous than commenting. The results of the present study highlight the need to consider spontaneity when assessing individuals who use AAC systems.
Controlled trial of the short- and long-term effect of psychological treatment of post-partum depression – 1. Impact on maternal mood!
COOPER, P. J., MURRAY, L., WILSON, A. & ROMANIUK, H.
(2003)
Background Psychological interventions for postnatal depression can be beneficial in the short term but their longer-term impact is unknown.
Aims To evaluate the long-term effect on maternal mood of three psychological treatments in relation to routine primary care.
Method Women with post-partum depression (n=193) were assigned randomly to one of four conditions: routine primary care, non-directive counselling, cognitive—behavioural therapy or psychodynamic therapy. They were assessed immediately after the treatment phase (at 4.5 months) and at 9, 18 and 60 months post-partum.
Results Compared with the control, all three treatments had a significant impact at 4.5 months on maternal mood (Edinburgh Postnatal Depression Scale, EPDS). Only psychodynamic therapy produced a rate of reduction in depression (Structured Clinical Interview for DSM—III — R) significantly superior to that of the control. The benefit of treatment was no longer apparent by 9 months post-partum. Treatment did not reduce subsequent episodes of post-partum depression.
Conclusions Psychological intervention for post-partum depression improves maternal mood (EPDS) in the short term. However, this benefit is not superior to spontaneous remission in the long term.
Correlational and experimental study of resilience in children and parentally bereaved children
Sandler, I., Wolchik, S., Davis, C., Haine, R. & Ayers, T.
(2003)
This chapter presents research on resilience of children and adolescents who have experienced two major disruptions of the nuclear family, parental divorce and parental bereavement. The two research programs share a common research paradigm in which there is an iterative relationship between correlational and experimental studies (Sandler, Wolchik, MacKinnon, Ayers, & Roosa, 1997). Correlational studies are used to identify protective and vulnerability factors, particularly those that may be modifiable by planned interventions. Experimental studies are designed on the basis of the small theory that changing these factors in the desirable direction will promote resilience. Randomized experimental trials of the interventions are conducted to test whether the intervention has changed these vulnerability and protective factors and reduced negative outcomes and whether change in negative outcomes is mediated by change in the vulnerability and protective factors (Sandler et al., 1997). The mediational analysis within the randomized trial provides a stronger test of the causal role of the vulnerability and protective factors to influence negative outcomes than is provided by the correlational studies, and thus contributes to theory about resilience (Rutter, Pickles, Murray, & Eaves, 2001).
The chapter first presents a theoretical framework that specifies alternative models of the influence of vulnerability and protective factors on the resilience of children experiencing significant adversities. We then discuss correlational research on key constructs in the theoretical framework: adversity, and child and family protective and vulnerability factors.
Costs and Caregiver Consequences of Early Supported Discharge for Stroke Patients
Teng J, Mayo NE, Latimer E, Hanley J, Wood-Dauphinee S, Côté R, et al.
(2003)
Background and Purpose— Early supported discharge (ESD) for stroke has been shown to yield outcomes similar to or better than those of conventional care, but there is less information on the impact on costs and on the caregiver. The purpose of this study is to estimate the costs associated with an ESD program compared with those of usual care.
Methods— We conducted a randomized controlled trial of stroke patients who required rehabilitation services and who had a caregiver at home.
Results— Acute-care costs incurred before randomization when patients were medically ready for discharge averaged $3251 per person. The costs for the balance of the acute-care stay, from randomization to discharge, were $1383 for the home group and $2220 for the usual care group. The average cost of providing the 4-week home intervention service was $943 per person. The total cost generated by persons assigned to the home group averaged $7784 per person, significantly lower than the $11 065 per person for those assigned to usual care. A large proportion of the cost differential between the 2 groups arose from readmissions, for which the usual care group generated costs more than quadruple those of the home intervention group.
Conclusions— Providing care at home was no more (or less) expensive for those with greater functional limitation than for those with less. Caregivers in the ESD group scored consistently lower on the Burden Index than caregivers with usual care, even caregivers of persons with major functional limitations. For persons recovering from stroke and their families, ESD provides a cost-effective alternative to usual care.
Deliberate self-harm in Oxford 1990-2000; a time of change in patient characteristics
Hawton K, Harriss L, S. H, Simkin S, Bale E, A. B.
(2003)
BACKGROUND:
Trends in deliberate self-harm (DSH) are important because they have implications for hospital services, may indicate levels of psychopathology in the community and future trends in suicide, and can assist in identification of means of suicide prevention.
METHOD:
We have investigated trends in DSH and characteristics of DSH patients between 1990 and 2000 based on data collected through the Oxford Monitoring System for Attempted Suicide.
RESULTS:
During the 11-year study period 8590 individuals presented following 13858 DSH episodes. The annual numbers of persons and episodes increased overall by 36.3% and 63.1% respectively. Rates (Oxford City) declined, however, in the final 3 years. There were gender- and age-specific changes, with a rise in DSH rates in males aged > or = 55 years and in females overall and those aged 15-24 years and 35-54 years. Repetition of DSH increased markedly during the study period. Antidepressant overdoses, especially of SSRIs, increased substantially. Paracetamol overdoses declined towards the end of the study period. Alcohol abuse, use of alcohol in association with DSH, and violence increased, especially in females, and the proportion of patients in current psychiatric care and misusing drugs also rose.
CONCLUSIONS:
While overall rates of DSH did not increase markedly between 1990 and 2000, substantial changes in the characteristics of the DSH population and a rise in repetition suggest that the challenges facing clinical services in the management of DSH patients have grown.
Demensförbundets anhörigenkät. Sammandrag av resultatet från enkätundersökningen
Demensförbundet
(2003)
Den svenska psykiatrireformen. Bland brukare, eldsjälar och byråkrater
Markström, U.
(2003)
Människor med ett psykiskt funktionshinder ska ha samma möjlighet till gemenskap och delaktighet som andra. Den målsättningen var grunden för den svenska psykiatrireformen som trädde i kraft 1995.
De psykiskt funktionshindrades livssituation skulle förbättras med hjälp av effektivare insatser och tydligare ansvarsfördelning mellan kommuner och landsting.
Det blev en omdebatterad reform. Kritikerna menar att de psykiskt funktionshindrade riskerar att överges eller hänvisas till en socialtjänst utan nödvändig kunskap.
Förespråkarna hävdar tvärt om att utvecklingen är nödvändig för att kunna integrera de psykiskt funktionshindrade i samhället.
I denna bok studeras planeringen och genomförandet av psykiatrireformen samt den historiska utvecklingen på psykiatriområdet, från de stora mentalsjukhusen till dagens situation. Utvecklingen av nya synsätt och arbetsmetoder granskas, liksom den politiska processen bakom psykiatrireformens tillkomst.
PinterestTwitter
Den tatuerade mamman
Jaquelin Wilson
(2003)
Dolphin och Star älskar sin mamma Marigold. Hon är rolig, äventyrlig och påhittig - och täckt från topp till tå med tatueringar. Flickorna tycker att de har världens bästa mamma. Om hon bara inte vore så oberäknelig, opålitlig och sällan fanns där för dem. Marigold festar mycket och lever sitt liv som hon gjorde under hippie-tiden. Men ibland går hon in i djupa depressioner. Hon är inte någon exemplarisk mamma och kanske inte heller rätt person att ha ansvar för två unga flickor?
Det är bara att kämpa på. Barns upplevelse av habilitering, skola och fritid, samt kommentarer från föräldrar: Teknik, Kommunikation Handikapp, rapport 34
Bernehäll Claesson, I.
(2003)
Syftet med denna rapport är att belysa hur barn med cerebral pares mellan
tio och sjutton år upplever sina möjligheter att påverka stödinsatser och
behandlingsmetoder som de erhåller från olika institutioner samt att öka
kunskaperna om deras unika situation. Det innebär att intresset fokuserar på
barnens upplevelser och erfarenheter av habilitering, skola och fritid. Dessa
barns vardag skiljer sig i många avseenden från andra barns vardag.
Metoden som använts är intervjuer med barnen men jag har även talat med
föräldrarna. Med hjälp av barnhabiliteringen vid Kärnsjukhuset i Skövde,
Handikappförvaltningen i Järfälla kommun samt Mullback Institutet i
Karlsborg, har jag fått kontakt med familjerna. De har tillfrågat familjerna
om intresse att delta. De flesta intervjuer har genomförts i barnens hem, en
på ett fritidshem samt två på Mullback Institutet.
Resultatet visade att barnen är relativt nöjda och tycker det mesta fungerar
bra. Det som ibland är problem är kamratkontakterna i skolan och på
fritiden. Många barn känner sig ensamma och isolerade. Föräldrarna anser
att deras barn är i behov av mer träning via habiliteringen och betonar att
kamratkontakterna är ett större problem än vad barnen ibland vill erkänna.
Development in the support of carers in Finland, England and The Netherlands, 1998-2002
Pijl, M.
(2003)
Development in the support of carers in Finland, England and The Netherlands, 1998-2002.
Pijl, M.
(2003)
Dirigent saknas i vård och omsorg för äldre : om nödvändigheten av samordning.
Gurner, U., Thorslund, M.
(2003)
Disability, Ageing and Carers, Australia: Caring in the Community
Australian Bureau of Statistics (ABS)
(2003)
Does early caregiving matter? The effects on young caregivers’ adult mental health
Shifren, K., & Kachorek, L.V.
(2003)
Limited information is available on the long-term effects of providing care for adults when caregiving begins in childhood in the United States. The current study provided an examination of the effects of youthful caregiving on the mental health of these persons when adults, and provided a description of their early family relations. Twenty-four individuals, 21 to 58 years old, were given brief phone interviews with semistructured questions about their early caregiving experiences, and then they completed questionnaires on their early caregiving experiences, mental health, and early parent–child relations. To be included, respondents must have provided primary caregiving assistance (i.e., bathing, feeding, etc.) for a parent or adult relative when the caregiver was under 21 years old. Results showed that the sample reported more positive mental health than negative mental health, though 42% had high depressive scores on the total CES-D. Individuals who reported fathers as too protective reported less current positive mental health. Early caregiving is not associated with poor mental health in adulthood for many young caregivers. However, some individuals do appear at risk of depression in adulthood.
Does gender matter? : Differences in patterns of informal support and formal services in a Swedish urban elderly population
Larsson, K., & Thorslund, M.
(2003)
Does gender matter? : Differences in patterns of informal support and formal services in a swedish urban elderly population
Larsson, K., & Thorslund, M.
(2003)
Effectiveness of Child Case Management Services for Offspring of Drug-Dependent Women
Jansson LM, Svikis DS, Beilenson P.
(2003)
Female drug users and their children have many medical and psychosocial problems, yet they often fail to follow through with prescribed treatments. The present study describes a specialized, case management program for children, birth through age 2, exposed to drugs in utero. Evaluation of program efficacy was examined by comparing 2-year outcomes for women who received different intensities of these child case management services. Mothers who received higher intensity care were more likely to be abstinent from illicit drugs and to have retained custody of their child(ren) at 2-year follow-up than those with lower intensity services. Study findings support clinical and economic efficacy of this model of care.
Effects of an automated telephone support system on caregiver burden and anxiety: Findings from the reach for tlc intervention study
Mahoney, D. F., Tarlow, B. J. & Jones, R. N.
(2003)
Effects of an Emotional Disclosure Writing Task on the Physical and Psychological Functioning of Children of Alcoholics
Gallant MD, Lafreniere KD.
(2003)
This study investigated the effects of an emotional disclosure writing task on the physical and psychological functioning of pre-teen and adolescent children of alcoholics (N = 53). Participants were randomly assigned to one of three conditions: An emotional writing group, a non-emotional writing group, or a non-writing control group. Essays written by participants in both the emotional and non-emotional conditions differed significantly in content in hypothesized ways. Contradictory to what was expected, emotional disclosure failed to convey any additional health benefits. A general improvement was found for all groups over time on internalizing symptoms, affect, and physical symptoms.
Effects of an Emotional Disclosure Writing Task on the Physical and Psychological Functioning of Children of Alcoholics.
Gallant MD, Lafreniere KD.
(2003)
This study investigated the effects of an emotional disclosure writing task on the physical and psychological functioning of pre-teen and adolescent children of alcoholics (N = 53). Participants were randomly assigned to one of three conditions: An emotional writing group, a non-emotional writing group, or a non-writing control group. Essays written by participants in both the emotional and non-emotional conditions differed significantly in content in hypothesized ways. Contradictory to what was expected, emotional disclosure failed to convey any additional health benefits. A general improvement was found for all groups over time on internalizing symptoms, affect, and physical symptoms.
Efficacy of a Psychoeducative Group Program for Caregivers of Demented Persons Living at Home: A Randomized Controlled Trial
Hébert R, Lévesque L, Vézina J, Lavoie J-P, Ducharme F, Gendron C, et al.
(2003)
Ekonomisk prövning till rätten till äldre- och handikappomsorg
Socialstyrelsen
(2003)
Elderly care for ethnic minorities: wishes and expectations among elderly Finns in Sweden
Ekman, S.-L. and K. Heikkilä
(2003)
Ethical issues arising from a research, technology and development project to support frail older people and their family carers at home
Magnusson, L., & Hanson, E. J.
(2003)
Ett år efter Anhörig 300 - Uppföljning av kommunernas arbete med utveckling av anhörigstöd år 2002. Lägesbeskrivning
Socialstyrelsen
(2003)
Evaluation of a stroke family support organiser: a randomized controlled trial.
Lincoln NB, Francis VM, Lilley SA, Sharma JC, Summerfield M.
(2003)
Background and Purpose— There is inconclusive evidence of the effectiveness of the Stroke Family Support Organiser (FSO) service. We report the results from a randomized controlled trial of the service.
Methods— Stroke patients admitted to hospital and their informal caregivers were randomly allocated to receive the FSO service (n=126) or standard care (n=124). Outcome assessments were undertaken 4 and 9 months after recruitment with the General Health Questionnaire 12, Carer Strain Index, Barthel Index, Extended Activities of Daily Living scale, and a specially designed questionnaire to determine knowledge of stroke and satisfaction with services.
Results— There were no significant differences between groups in patients' mood and independence in personal or instrumental activities of daily living or caregivers' mood, strain, or independence. Patients in the intervention group were significantly more knowledgeable about whom to contact for stroke information, reducing the risk of stroke, practical help, community services, and emotional support. Patients in the intervention group were also significantly more satisfied with the stroke information received. Caregivers in the intervention group were significantly more knowledgeable about whom to contact for information on stroke, reducing the risk of stroke, community services, and emotional support. Caregivers in the intervention group were also significantly more satisfied with stroke information.
Conclusions— The FSO service had no significant effect on mood, independence in activities of daily living, or reduction in caregiver strain, but it did increase knowledge of stroke and satisfaction with that knowledge. The results may not be representative of all FSO services, and the sample was small relative to the heterogeneity of the participants. However, results suggest that the policies and training procedures of FSOs need to be evaluated to ensure that a cost-effective service is being provided to stroke patients and their caregivers.
Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature
Hill, V., Sahhar, M., Aitken, M. A., Savarirayan, R., & Metcalfe, S.
(2003)
Many studies have shown that, for families who are given the diagnosis of a disability, satisfaction with disclosure is an important element. Information given and the attitudes of the disclosing health professionals during this critical period have a significant effect on the coping and adaptation of the family. While most studies dealt with conditions involving intellectual disability or cancer, this study was conducted to explore parents' experience of being told that their child had a condition, such as a bone dysplasia, that would result in significant short stature. Semistructured interviews were conducted with 11 families who had children diagnosed with a bone dysplasia, specifically, achondroplasia (n = 9) and pseudoachondroplasia (n = 2). Families were recruited through the Bone Dysplasia Clinic at the Royal Children's Hospital, Victoria, Australia and via contact with the Short Statured People's Association of Victoria. Parents were asked about how they were told of their child's diagnosis, how they would have preferred to have been told, and what would have made the experience less distressing for them. Transcripts of the interviews were analyzed, and major themes were identified relating to the parents' experiences. Our data suggest that the manner in which the diagnosis is conveyed to the parents plays a significant role in their adjustment and acceptance. Provision of written information relating to the condition, possible medical complications, positive outlook for their child's future, and how to find social services and supports were some of the most significant issues for the parents. The multidisciplinary approach of the Bone Dysplasia Clinic was important to parents in the continued management of the families.
Experiences at the time of diagnosis of parents who have a child with a bone dysplasia resulting in short stature
Hill, V., Sahhar, M., Aitken, M. A., Savarirayan, R., & Metcalfe, S.
(2003)
Many studies have shown that, for families who are given the diagnosis of a disability, satisfaction with disclosure is an important element. Information given and the attitudes of the disclosing health professionals during this critical period have a significant effect on the coping and adaptation of the family. While most studies dealt with conditions involving intellectual disability or cancer, this study was conducted to explore parents' experience of being told that their child had a condition, such as a bone dysplasia, that would result in significant short stature. Semistructured interviews were conducted with 11 families who had children diagnosed with a bone dysplasia, specifically, achondroplasia (n = 9) and pseudoachondroplasia (n = 2). Families were recruited through the Bone Dysplasia Clinic at the Royal Children's Hospital, Victoria, Australia and via contact with the Short Statured People's Association of Victoria. Parents were asked about how they were told of their child's diagnosis, how they would have preferred to have been told, and what would have made the experience less distressing for them. Transcripts of the interviews were analyzed, and major themes were identified relating to the parents' experiences. Our data suggest that the manner in which the diagnosis is conveyed to the parents plays a significant role in their adjustment and acceptance. Provision of written information relating to the condition, possible medical complications, positive outlook for their child's future, and how to find social services and supports were some of the most significant issues for the parents. The multidisciplinary approach of the Bone Dysplasia Clinic was important to parents in the continued management of the families.
Experiences of parents with a son or daughter suffering from Schizophrenia
Ferriter M, Huband N.
(2003)
Parents of 22 patients diagnosed with schizophrenia, and receiving care in a secure forensic setting, were interviewed to elicit their views on the causes of the disorder, the emotional burden and the helpfulness of others when seeking support. Pathological parenting theories of causation were rated the least important, and biological and life-event models the most. Stress, loss and fear were the most commonly reported reactions. Violence, withdrawal and verbal aggression were most often identified as behaviours causing difficulty. Many participants felt guilt, usually in the absence of being blamed. Family members and self-help groups were recalled as being of most help, and professional staff were considered to be of least help. Parenting a son or daughter with schizophrenia frequently causes considerable emotional distress, often with perception of unhelpful responses from professional staff. Parents often blame themselves for the disorder, even when not blamed by others. Guilt does not appear to arise from belief in a pathological parenting model of schizophrenia. Factors contributing to self-blame in this group are discussed, together with suggestions for appropriate therapeutic intervention.
Exploring assistance in Sweden and the United States.
Shea, D., Davey, A., Femia, E. E., Zarit, S. H., Sundström, G., Berg, S., et al.
(2003)
Families and welfare states in elder care: Are services substituting or complementing the family?
Daatland S., Herlofsen K.
(2003)
Family members' narrated experiences of communicating via video-phone with patients with dementia staying at a nursing home
Sävenstedt, S., Brulin, C., & Sandman, P. O.
(2003)
Family-Based Interventions for Substance Use and Misuse Prevention
Kumpfer KL, Alvarado R, Whiteside HO.
(2003)
Because "substance abuse" is a "family disease" of lifestyle, including both genetic and family environmental causes, effective family strengthening prevention programs should be included in all comprehensive substance abuse prevention activities. This article presents reviews of causal models of substance use and evidence-based practices. National searches by the authors suggest that there is sufficient research evidence to support broad dissemination of five highly effective family strengthening approaches (e.g., behavioral parent training, family skills training, in-home family support, brief family therapy, and family education). Additionally, family approaches have average effect sizes two to nine time larger than child-only prevention approaches. Comprehensive prevention programs combining both approaches produced much larger effect sizes. The Strengthening Families Program (SFP) is the only one of these programs that has been replicated with positive results by independent researchers with different cultural groups and with different ages of children. Few research-based programs have been adopted by practitioners, partly because of technology transfer issues. Overall, research on ways to improve dissemination, marketing, training, and funding is needed to improve adoption of effective prevention programs.
Fri eller förankrad? :En empirisk studie av volontärverksamhet och ideella insatser inom stiftelsen stora Sköndal (Sköndalsinstitutets arbetsrapportserie, 1402-277x ; 30).
Engel, C.
(2003)
Funktionshindrade 1988-1999
Statistiska centralbyrån, SCB
(2003)
Funktionsnedsättningar som medför någon form av begränsningar i tillvaron utgör funktionshinder. I denna rapport redovisas levnadsförhållanden för personer med olika typer av funktionsnedsättningar. Det gäller dels ett antal medicinska sjukdomar, dels några grupper som definierats just utifrån sina funktionsbegränsningar.Rapporten är indelad i två delar där den första behandlar levnadsförhållanden för personer i normalt yrkesverksam ålder, 25-64 år, och den senare förhållanden för personer i pensionsålder, 65-84 år. I ett inledande kapitel redovisas också hur vanligt förekommande olika kombinationer av funktionsnedsättningar är. I rapporten jämförs de funktionsnedsattas förhållanden i slutet av 90-talet med förhållandena tio år tidigare, dvs. före och i slutet av ett årtionde som kännetecknades av stora problem på arbetsmarknaden och besparingar i den offentliga sektorn.
Funktionshindrade 1988-1999
Statistiska centralbyrån, SCB
(2003)
Funktionsnedsättningar som medför någon form av begränsningar i tillvaron utgör funktionshinder. I denna rapport redovisas levnadsförhållanden för personer med olika typer av funktionsnedsättningar. Det gäller dels ett antal medicinska sjukdomar, dels några grupper som definierats just utifrån sina funktionsbegränsningar.Rapporten är indelad i två delar där den första behandlar levnadsförhållanden för personer i normalt yrkesverksam ålder, 25-64 år, och den senare förhållanden för personer i pensionsålder, 65-84 år. I ett inledande kapitel redovisas också hur vanligt förekommande olika kombinationer av funktionsnedsättningar är. I rapporten jämförs de funktionsnedsattas förhållanden i slutet av 90-talet med förhållandena tio år tidigare, dvs. före och i slutet av ett årtionde som kännetecknades av stora problem på arbetsmarknaden och besparingar i den offentliga sektorn.
Fysisk svækkede ældres hjælp i hverdagen
Swane, C. & Hansen, E.
(2003)
Fånga stunden : Att vara anhörigvårdare till en person med demenssjukdom
Almberg, B., & Jansson, W.
(2003)
För den jag är – om utbildning och utvecklingsstörning
SOU
(2003)
Carlbeck-kommittén har till uppgift att se över utbildningen för barn, ungdomar och vuxna med utvecklingsstörning. Delbetänkandet För den jag är om utbildning och utvecklingstörning (SOU: 2003: 35), är en beskrivning och kartläggning av hur utbildningen för barn, ungdomar och vuxna ser ut i dag.
Kommitténs uppgift är att hitta vägar att stärka utbildningen för barn, ungdomar och vuxna med utvecklingstörning med det övergripande målet att åstadkomma en inkluderande skola och en inkluderande undervisning.
Föräldrastöd i Sverige 2002
Statens folkhälsoinstitut
(2003)
Internet kan ge bra stöd i föräldrarollen visar ny studie från Statens folkhälsoinstitut. Delrapport från uppdraget om föräldrastöd. Under utredningstiden har flera delrapporter tagits fram. Delrapporterna är "Föräldrastöd i Sverige år 2002", "Verklig gemenskap i en virtuell värld?", "Stöd till föräldrar för att främja barns och ungdomars psykiska hälsa" och slutrapporten "Nya verktyg för föräldrar".
Gauging quality in constructivist research - the ÄldreVäst Sjuhärad model revisited.
Nolan, M., Hanson, E., & Magnusson, L.
(2003)
Group interventions for children at-risk from family abuse and exposure to violence
Johnston, J.R.
(2003)
This paper describes the rationale, content, and preliminary data on outcome effectiveness of a therapeutic curriculum designed for groups of children from highly conflicted and violent families, implemented in family agency and school settings. Data for 223 children (ages 5–14 years, most of whom were from single-parent, indigent, ethnic minority families) who participated in the study indicate that the majority had been exposed to multiple types of stressful and traumatic events. These include separation and loss of a parent or caretaker, exposure to spousal and child abuse, neighborhood violence, and having a family member in trouble with the law. The absence of a control group makes it difficult to determine to what extent the positive outcomes can be attributed to the group intervention. However, a pre- and post-assessment of the children's behavioral problems and social competence by clinicians, teachers, and parents showed significant improvement in their functioning over a six-month follow-up. Conclusions are drawn as to the basic elements of group interventions that are ecologically and economically.
Helseprofil for Oslo: Eldre. KS Forskning. Program for storbyrettet forskning
Folkhelseinstituttet
(2003)
Ifrågasatta fäder. Olika bilder av fäder till socialt utsatta barn
Bangura Arvidsson, M.
(2003)
Faderskap är en familjepolitisk angelägenhet där staten går in och intervenerar och på så sätt fostrar fäder. Tyngdpunkten ligger på att uppmuntra fadersnärvaro och att förmå frånvarande fäder att ta ansvar för sina barn. Detta ger oss en bild av vad som uppfattas som bra fäder och vad som avviker från normen. Den sociala barnavården är en kontext som verkar inom den socialpolitiska, men på ett mer direkt sätt griper in i individens liv. I litteratur och forskning inom socialt arbete framstår ifrågasatta fäder som frånvarande i dubbel bemärkelse. Att de knappast syns i litteraturen förstärker en allmän uppfattning om att fäder till socialt utsatta barn är frånvarande även för sina barn. Många fäder är förvisso frånvarande, men en annan anledning till att ifrågasatta fäder inte syns är modersfixering och kvinnodominans inom den sociala barnavården. I avhandlingen presenteras olika bilder av ett faderskap som är relativt outforskat, nämligen ifrågasatta fäder, alltså fäder vars barn utretts av sociala myndigheter. Utifrån studier av 40 barnavårdsutredningar och intervjuer med 13 socialsekreterare (på två socialkontor) och 19 pappor ges bl.a. svar på vad det står skrivet om fäder i socialtjänstens utredningar; hur socialsekreterare ser på sitt arbete vad gäller fäder; samt hur pappor till socialt utsatta barn upplever sitt eget faderskap, relationen till sina barn och kontakten med sociala myndigheter. Bilderna av ifrågasatt faderskap i de tre delstudierna, men i synnerhet de bilder som kom fram i intervjuerna med socialsekreterarna och papporna, präglas av kluvenhet och ambivalens. Det beror på olikheter mellan den familjepolitiska kontexten och den kontext som den sociala barnavården omfattas av, i tolkningarna av vad som är barns bästa när det gäller kontakt med sina fäder. Bilden av fäder i barnavårdsutredningarna framstod som fragmentarisk och bristfällig, men i den information som fanns framkom en uppfattning om att barn behöver fäder. De bilder som skymtade fram var av fäder som å ena sidan närvarande, ansvarsfulla, och till glädje för barnet, å andra sidan oansvariga, våldsamma, i konflikt med barnets mor, skrämmande, frånvarande och efterlängtade. Jag urskiljde tre teman för vad ett gott faderskap innebär. Dessa är närvaro, ansvar och gränssättning. Genom att involvera fäderna i utredningen och dokumentera det, visade socialsekreterarna att de lever upp till vad som förväntas av dem utifrån den generella socialpolitiska diskursen om fäder, nämligen att stärka fäders relation till sina barn. Å andra sidan har socialsekreterarna eget handlingsutrymme att avgöra om fäder ska kontaktas eller inte i de fall de inte är vårdnadshavare. Bilden av fäder i intervjuerna med socialsekreterarna präglades av ambivalens mellan de olika tolkningarna av barns bästa. Det handlar å ena sidan om en uppfattning om barns bästa utifrån socialpolitiska intentioner. Utifrån detta framhöll socialsekreterarna umgänge mellan barn och far som viktigt. Å andra sidan handlar det om att barn kan behöva skyddas från sina fäder, vilket är den verklighet som socialsekreterarna också möter i sitt arbete. Samtidigt visade sig också en kluvenhet mellan upprätthållandet av den traditionella respektive den moderna fadern genom att socialsekreterarna upprätthöll traditionella könsrollsmönster samtidigt som de försökte fostra moderna fäder. De hade snarlika bedömningskriterier för fäder och mödrar. Dessa baserades på föreställningar om modrande egenskaper. De ställde emellertid lägre krav på fäderna eftersom de inte förväntades uppnå dem i samma utsträckning som mödrarna. I intervjuerna med socialsekreterarna återkom de tre temana för gott faderskap, nämligen närvaro, ansvar och gränssättning. Men även ett fjärde tema blev tydligt, nämligen att barn behöver sina fäder för att ha tillgång till en manlig förebild. Socialarbetarkåren består mestadels av kvinnor. Kvinnodominansen inom den sociala barnavården sågs som ett problem samtidigt som några socialsekreterare menade att skillnader i ålder eller etniskt ursprung var lika betydelsefullt som kön i deras kontakt med fäder. Socialsekreterarna uttryckte acceptans för avvikande beteende hos fäderna. Vilka beteenden som accepterades var olika i A-by respektive B-stad beroende på vilka fäder de mötte. Socialsekreterarna i A-by hade mest frånvarande fäder att förhålla sig till. I B-stad mötte socialsekreterarna nästan bara närvarande invandrarfäder. Jag menar att socialsekreterarnas kontakt med invandrarfäder har betydelse för sättet att betrakta faderskap och att det innebär ett annat slags socialt arbete med fäder i B-stad än i A-by. B-stads möte med aktiva (i flera fall alltför aktiva) invandrarfäder och även misshandlande invandrarfäder gav en annan bild av fäder och innebar en annan verklighet att förhålla sig till än den i A-by. Pappornas bild av sitt eget faderskap präglas också av kluvenhet och ambivalens. Papporna känner sig missförstådda av sociala myndigheter. De uttryckte desperation, maktlöshet och kände sig stämplade. De måste kämpa för att få vara aktiva och närvarande fäder för sina barn och att bli sedda som det. Dessutom ifrågasätter flera av papporna sig själva som fäder. I synnerhet de pappor som missbrukar eller har missbrukat är näst intill skoningslösa i beskrivningarna av sig själva och hur de har behandlat sina barn. Flera hade erfarit att barn är oförenligt med missbruk. Det innebar antingen att de var känslomässigt frånvarande för barnen trots att de var fysiskt närvarande eller att de var fysiskt frånvarande. Pappornas bilder är färgade av stark längtan efter Svenssonliv d.v.s. kärnfamiljsliv. Jag menar att papporna i vissa avseenden kan ses som marginaliserade. Å andra sidan ger papporna en bild av sig själva som normala fäder. De beskriver gott faderskap som att vara närvarande, aktiva, manliga förebilder och att kunna sätta gränser, men de gör det i en annorlunda betydelse än socialsekreterarna. Flera av dem menar att de lever upp till det, även om det är svårt ibland. Liksom fäder i allmänhet, känner de osäkerhet i sin fadersroll och menar att relationen till sina egna fäder haft betydelse, men kanske använder papporna i större utsträckning sina egna fäder som negativt exempel. Modern hade större betydelse än väntat. De flesta var glada för att bli pappor, var med vid förlossningen och beskrev den med mycket positiva ord. De menade att de mognat med faderskapet och att livet fått en annan mening. Barnen hade en viktig plats i deras liv och de upplevde att de betyder mycket för sina barn och att de är viktiga som pappor för dem. Förutom närvaro, ansvar, gränssättning och förebilder, betonar papporna känslomässiga aspekter som viktiga för faderskapet. Bilden av det normala faderskapet betyder sannolikt mer för pappor med en fot i marginalen. Svenssonlivet framställs på ett idealiserat sätt och ett näst intill ouppnåeligt mål. Det kan uppstå svårigheter med gränssättning gentemot barnen när papporna ska ta igen tidigare brister i faderskapet. De upplever en kluvenhet mellan missbruk och barn och känner oro och skuld inför sina barn. Samtidigt ser de att deras erfarenheter som ifrågasatta fäder har fört med sig värdefulla erfarenheter som inte fäder i allmänhet har. Avhandlingen visar att bilden av fäder till socialt utsatta barn som huvudsakligen frånvarande är missvisande. Snarare finns det en variation som är svår att se utan att tala med fäderna själva. Mer kunskap om fädernas perspektiv och socialtjänstens bilder av ifrågasatt faderskap kan leda till en bättre kommunikation mellan fäder och socialtjänsten. Det kan i sin tur stärka socialt utsatta barns livssammanhang.
Impacts on practitioners of using research-based carer assessment tools: Experiences from the UK, Canada and Sweden, with insights from Australia.
Guberman, N., Nicholas, E., Nolan, M., Rembicki, D., Lundh, U., & Keefe, J.
(2003)
IT i hälso- och sjukvården : Kan IT göra vården bättre och billigare? Hur? Och hur långt har vi kommit i Sverige : Rapport nr 4 från ett interaktivt seminarium inom ITHS-programmet.
Vårdalstiftelsen
(2003)
IT-stöd för vård i hemmiljö : Exempel från Svenska kommuner (Carelink rapport ).
Carelink
(2003)
Just getting on with it: Exploring the service needs of mothers who care for young children with severe/profound and life-threatening intellectual disability
Redmond, B., & Richardson, V.
(2003)
Background This study interviewed mothers (n= 17) of children aged 4 years and under with severe/profound intellectual disability, some with attendant complex medical, life-limiting conditions.
Methods The study explored the mothers' views of the usefulness of the financial, practical and emotional supports being offered to them and their suggestions for service improvements.
Results The study reveals these mothers to be engaged in stressful but skilled care of their children with a clear wish to continue caring for their child in the family home. Mothers frequently referred to the process of gaining useful information on services as 'haphazard' and most of the services offered to them as uncoordinated, unreliable and difficult to access. The study reveals that many of these children's needs are not being adequately met by either the intellectual disability services or the acute medical services, and some families are forced to privately finance services such as physiotherapy and speech therapy.
Conclusions The data reveal that mothers want services offered to them in their own home, particularly short home-based respite, which would offer them short breaks to rest or engage in part-time employment. The study concludes that a reliable and flexible service response, including a comprehensive information and advocacy support is indicated for these families.
Klassifikation av funktionstillstånd, funktionshinder och hälsa
Socialstyrelsen
(2003)
Kommunernas insatser för personer med psykiska funktionshinder
Socialstyrelsen
(2003)
Psykiatrireformen trädde i kraft 1995. Reformen syftade till att förbättra livssituationen för personer med psykiska funktionshinder och öka deras möjligheter till gemenskap och delaktighet i samhället. Reformen omfattar främst personer som bedöms ha långvariga och allvarliga funktionsnedsättningar p.g.a. en psykisk sjukdom och som är i behov av stöd-, vård- och rehabiliteringsinsatser för att få en bättre livssituation. De åtgärder som föreslogs i propositionen skulle inriktas på att ge ett mer effektivt och samordnat samhällsstöd till målgruppen. Kommunernas ansvar förtydligades när det gäller att planera och samordna de insatser som personer med psykiska funktionshinder behövde. Förtydligas gjorde också kommunernas ansvar för att utveckla boendeformer och verksamheter för sysselsättning.
Regeringen konstaterade dock 2003 att det fortfarande finns brister i den psykiatriska vården och den sociala omsorgen. I oktober 2003 tillkallade därför regeringen (dir. 2003:133) en nationell psykiatrisamordnare med uppgift att se över väsentliga frågor inom vård, social omsorg och rehabilitering av psykiskt sjuka och personer med psykiska funktionshinder.
Socialstyrelsens utvärdering av psykiatrireformen (1999) visade att den hade fått en god start men ännu inte "satt sig". Det ansågs dock viktigt att reformarbetet fortsatte på bred front både lokalt och nationellt. I utvärderingen konstaterades vidare att det behövdes en aktiv, tydlig och sammanhållen tillsyn för att stödja en god verksamhetsutveckling.
Inom ramen för det Nationella programmet för tillsyn över socialtjänsten togs 2001 ett första steg till en utveckling av tillsynen i denna riktning. Länsstyrelserna och Socialstyrelsen beslutade då att kraftsamla sina resurser i en gemensam tillsyn över kommunernas insatser för personer med psykiska funktionshinder. Även kommunernas ansvar för hälso- och sjukvård har ingått i tillsynen. Kraftsamlingen har genomförts i form av ett tillsynsprojekt under åren 2002–2004. Samtliga tjugoen länsstyrelser har deltagit, dock i olika omfattning. Fyra delgranskningar har genomförts:
Tillsyn av samtliga kommuners planering av verksamheten för personer med psykiska funktionshinder på ledningsnivå, våren 2002.
Tillsyn av socialtjänstens arbete med enskilda personer med psykiska funktionshinder i ett urval av kommuner, 2002–2003.
Tillsyn av kvalitet och innehåll i verksamheter för boende och sysselsättning i ett urval av kommuner, 2002–2003.
Uppföljning av den första delundersökningen på några problemområden, hösten 2004.
För att åstadkomma en kraftsamling krävs även en samverkan mellan den sociala tillsynens aktörer och tillsynen över kommunernas hälso- och sjukvård. För det senare svarar Socialstyrelsens sex regionala tillsynsenheter. Även kommunernas ansvar för viss hälso- och sjukvård ingår därför i tillsynen.
Projektet har haft expertstöd från Socialpsykiatriskt kunskapscentrum i Västerbotten. En referensgrupp till tillsynsprojektet med representanter från Riksförbundet för Social och Mental Hälsa (RSMH) och Schizofreniförbundet har följt tillsynen och deltagit i såväl planeringen av tillsynsprojektet som i analysen av resultatet.
Tillsynsfrågor
De områden som granskats i tillsynen utgår från kommunernas ansvar för personer med psykiska funktionshinder. Huvudfrågan i tillsynen har varit: Är verksamheten så beskaffad att tillräckligt goda förutsättningar skapas för att personer med psykiska funktionshinder "får möjlighet att delta i samhällets gemenskap och att leva som andra" (5 kap. 7 § SoL)? Fyra huvudfrågor har ansetts vara centrala för tillsynen. De är:
Tar kommunerna sitt ansvar för att skaffa sig kännedom om personer med psykiska funktionshinder och nå de personer som har behov av socialtjänstens insatser?
Tar kommunerna sitt ansvar att styra och planera sin verksamhet för personer med psykiska funktionshinder?
Tar kommunerna sitt ansvar att tillhandahålla ett varierat utbud av insatser med god kvalitet?
Tar kommunerna sitt ansvar för att enskilda personer med psykiska funktionshinder får ett behovsstyrt, samordnat och rättssäkert stöd?
Less is more: meta-analyses of sensitivity and attachment interventions in early childhood
BAKERMANS-KRANENBURG, M. J., VAN, I. M. H. & JUFFER, F.
(2003)
Is early preventive intervention effective in enhancing parental sensitivity and infant attachment security, and if so, what type of intervention is most successful? Seventy studies were traced, producing 88 intervention effects on sensitivity (n = 7,636) and/or attachment (n = 1,503). Randomized interventions appeared rather effective in changing insensitive parenting (d = 0.33) and infant attachment insecurity (d = 0.20). The most effective interventions used a moderate number of sessions and a clear-cut behavioral focus in families with, as well as without, multiple problems. Interventions that were more effective in enhancing parental sensitivity were also more effective in enhancing attachment security, which supports the notion of a causal role of sensitivity in shaping attachment.
'Lost solidarity' or 'changed solidarity': A comparative european view of normative family solidarity.
Daatland, S. O., & Herlofson, K
(2003)
Manual for the ASEBA Adult Forms and Profiles
Achenbach TM, Rescorla LA.
(2003)
Manual for the ASEBA Adult Forms and Profiles
Achenbach TM, Rescorla LA
(2003)
Manual explains the development, standardization, applications, and profiles for the ASEBA adult forms. Also provides reliability and validity data, problem prevalence rates, scale scores, scoring instruments, and answers to common questions. 232 pages.
Mortality in parents after the death of a child in Denmark: a nationwide follow-up study
Li, J., Precht D. H., Mortensen P. B., & Olsen J.
(2003)
Abstract
BACKGROUND:
Little is known about the effect of parental bereavement on physical health. We investigated whether the death of a child increased mortality in parents.
METHODS:
We undertook a follow-up study based on national registers. From 1980 to 1996, we enrolled 21062 parents in Denmark who had a child who had died (exposed cohort), and 293745 controls--ie, parents whose children were alive, and whose family structure matched that of the exposed cohort. Natural deaths were defined with ICD8 codes 0000-7969 and ICD10 codes A00-R99, and unnatural deaths with codes 8000-9999 and V01-Y98. We used Cox's proportional-hazards regression models to assess the mortality rate of parents up to 18 years after bereavement.
FINDINGS:
We observed an increased overall mortality rate in mothers whose child had died (hazards ratio 1.43, 95% CI 1.24-1.64; p<0.0001). An excess mortality from natural causes (1.44, 1.15-1.78; p<0.0001) was noted in mothers only during the 10th-18th year of follow-up. Mothers had increased mortality rates from unnatural causes throughout follow-up, with the highest rate recorded during the first 3 years (3.84, 2.48-5.88; p<0.0001). Bereaved fathers had only an early excess mortality from unnatural causes (1.57, 1.06-2.32; p=0.04). Mothers who lost a child due to an unnatural death or an unexpected death had a hazard ratio of 1.72 (1.38-2.15; p=0.0040) and 1.67 (1.37-2.03; p=0.0037), respectively.
INTERPRETATION:
The death of a child is associated with an overall increased mortality from both natural and unnatural causes in mothers, and an early increased mortality from unnatural causes in fathers.
Mortality, severe morbidity an injury in children living with single parents in Sweden: a population-based study
Ringbäck-Weitoft, G, Hjern, A, Haglund, B & Rosén, M
(2003)
Abstract
BACKGROUND:
Growing up with one parent has become increasingly common, and seems to entail disadvantages in terms of socioeconomic circumstances and health. We aimed to investigate differences in mortality, severe morbidity, and injury between children living in households with one adult and those living in households with two adults.
METHODS:
In this population-based study, we assessed overall and cause-specific mortality between 1991 and 1998 and risk of admission between 1991 and 1999 for 65085 children with single parents and 921257 children with two parents. We estimated relative risks by Poisson regression, adjusted for factors that might be presumed to select people into single parenthood, and for other factors, mainly resulting from single parenthood, that might have affected the relation between type of parenting and risk.
FINDINGS:
Children with single parents showed increased risks of psychiatric disease, suicide or suicide attempt, injury, and addiction. After adjustment for confounding factors, such as socioeconomic status and parents' addiction or mental disease, children in single-parent households had increased risks compared with those in two-parent households for psychiatric disease in childhood (relative risk for girls 2.1 [95% CI 1.9-2.3] and boys 2.5 [2.3-2.8]), suicide attempt (girls 2.0 [1.9-2.2], boys 2.3 [2.1-2.6]), alcohol-related disease (girls 2.4 [2.2-2.7], boys 2.2 [2.0-2.4]), and narcotics-related disease (girls 3.2 [2.7-3.7], boys 4.0 [3.5-4.5]). Boys in single-parent families were more likely to develop psychiatric disease and narcotics-related disease than were girls, and they also had a raised risk of all-cause mortality.
CONCLUSIONS:
Growing up in a single-parent family has disadvantages to the health of the child. Lack of household resources plays a major part in increased risks. However, even when a wide range of demographic and socioeconomic circumstances are included in multivariate models, children of single parents still have increased risks of mortality, severe morbidity, and injury.
Mortality, severe morbidity, and injury in children living with single parents in Sweden: a population- based study
Ringbäck-Weitoft, G. Hjern A Haglund, B. Rosén, M
(2003)
Background
Growing up with one parent has become increasingly common, and seems to entail disadvantages in terms of socioeconomic circumstances and health. We aimed to investigate differences in mortality, severe morbidity, and injury between children living in households with one adult and those living in households with two adults.
Methods
In this population-based study, we assessed overall and cause-specific mortality between 1991 and 1998 and risk of admission between 1991 and 1999 for 65 085 children with single parents and 921 257 children with two parents. We estimated relative risks by Poisson regression, adjusted for factors that might be presumed to select people into single parenthood, and for other factors, mainly resulting from single parenthood, that might have affected the relation between type of parenting and risk.
Findings
Children with single parents showed increased risks of psychiatric disease, suicide or suicide attempt, injury, and addiction. After adjustment for confounding factors, such as socioeconomic status and parents' addiction or mental disease, children in single-parent households had increased risks compared with those in two-parent households for psychiatric disease in childhood (relative risk for girls 2·1 [95% CI 1·9–2·3] and boys 2·5 [2·3–2·8]), suicide attempt (girls 2·0 [1·9–2·2], boys 2·3 [2·1–2·6]), alcohol-related disease (girls 2·4 [2·2–2·7], boys 2·2 [2·0–2·4]), and narcotics-related disease (girls 3·2 [2·7–3·7], boys 4·0 [3·5–4·5]). Boys in single-parent families were more likely to develop psychiatric disease and narcotics-related disease than were girls, and they also had a raised risk of all-cause mortality.
Conclusions
Growing up in a single-parent family has disadvantages to the health of the child. Lack of household resources plays a major part in increased risks. However, even when a wide range of demographic and socioeconomic circumstances are included in multivariate models, children of single parents still have increased risks of mortality, severe morbidity, and injury.
My-Elins mamma har MS
Barbro Ernemo, Nilsson-Bergman
(2003)
Det här är en bok om och hennes familj. My-Elins mamma är också som mammor är mest: snäll, glad och litet tjatig. Men ibland blir mamma jättetrött. Hon har en sjukdom som kallas MS. Den gör att armar och ben inte gör som hon vill. Ibland ser hon konstiga saker och ibland glömmer hon. Sjukdomen gör att allt inte går som planerat i My-Elins familj.
New possibilities for home nursing with information technology
Magnusson, L., & Hanson, E.
(2003)
Normaliseringsprincipen
Nirje, Bengt
(2003)
ormaliseringsprincipen handlar om funktionshindrades rätt till livsvillkor och vardagsmönster som ligger så nära de normala som möjligt. Sedan principen formulerades av Bengt Nirje i slutet av 1960-talet har den haft ett stort inflytande på handikappolitiken både i Sverige och i andra länder. Nirje har under årens lopp i artiklar på engelska presenterat och utvecklat principen. I denna bok presenteras dessa artiklar i uppdaterat skick för första gången på svenska och samlade i ett verk.
Principen utgår från att alla individers jämlikhet med den därav följande etiken som grund under livets gång. Särskilt nyskapande blev Nirjes betoning av utvecklingsstördas rätt till självbestämmande.
Principen är tvärvetenskaplig och kan därför studeras av högskolestuderande inom pedagogik, psykologi, socialpsykologi, kulturantropologi, sociologi samt omsorgsvetenskap. Den kan även vara av intresse för yrkesverksamma samt föräldrar till funktionshindrade.
Normaliseringsprincipen sätts i ett inledande kapitel in i sitt historiska sammanhang av Mårten Söder, som i ett avslutande kapitel även diskuterar dess betydelse för handikappolitik och handikappforskning.
Normaliseringsprincipen [The principle of normalization]
Nirje B.
(2003)
Ǿkt individualisering og omsorgsrelasjoner i familien. omosrgsmǿnstre mellom middeladrene kvinner og men nog deres gamle foreldre. Fafo-rapport 420
Gautun, H
(2003)
Omsorgens pris. Kjønn, makt og marked i velferdsstaten
Widding Isaksen, I. (red).
(2003)
Outcome studies of family therapy in child and adolescent depression
Cottrell D.
(2003)
There is surprisingly little good-quality evidence for the effectiveness of family systemic interventions with child and adolescent depression given the prevalence of depression and the demonstrated association with a range of family factors. What studies there are suggest the possibility of family therapy being an effective intervention but more research is needed before firm conclusions may be drawn. Family interventions may be more effective in children than in adolescents and where other family members are depressed. It is possible that family interventions continue to bring about improvement in symptoms after cessation of treatment. What research there is evaluates older structural models of therapy: there is a real need for more evaluation of newer models of practice.
Overview of fetal alcohol spectrum disorders for mental health professionals
Clarke ME, Gibbard WB.
(2003)
Fetal Alcohol Spectrum Disorders (FASD), including Fetal Alcohol Syndrome (FAS) and related disorders such as Alcohol Related Neurodevelopmental Disorder (ARND) are the most common form of developmental disability and birth defects in the western world. Early recognition and accurate diagnosis by mental health professionals remains a key issue. This article reviews history, mechanisms of alcohol exposure, epidemiology, diagnosis and management of FASD.
Parent and adolescent responses to non-terminal parental cancer: retrospective multi-case pilot study
Davey, M., Askew, J., och Godette, K.
(2003)
This article presents the results of a retrospective multiple-case pilot study (6 families: 4 Caucasian and 2 African American) designed to uncover how parents and their adolescent children (ages 11-18) were affected by non-terminal parental cancer, and how they adjusted to and coped with cancer. Drawing from phenomenology and the collective case study approach, findings suggest that parents were often unaware of the stress and overwhelming feelings of sadness and fear their adolescent children were experiencing. Often the adolescent children tried to protect their parents by not sharing their feelings openly with them; this was particularly so for the oldest offspring in the family. These findings provide important insights for healthcare professionals in serving this often-neglected population of families more effectively.
Parenting of children with Attention-Deficit/Hyperactivity Disorder (ADHD): The role of parental ADHD symptomatology
Harvey, E., Danforth, J. S., Eberhardt McKee, T., Ulaszek, W. R., & Friedman, J. L.
(2003)
OBJECTIVE:
The present study examined the relation between parental ADHD symptomatology and parent-child behavior among 46 mothers and 26 fathers of ADHD children.
RESULTS:
Fathers' self-reports of inattention and impulsivity were strongly associated with self-reports of lax parenting both before and after parent training, and with self-reports of overreactivity after parent training. Fathers' impulsivity was also associated with more arguing during audiotaped observations of parent-child interactions prior to parent training. Mothers' self-reports of inattention were modestly associated with self-reports of laxness before and after parent training. Prior to parent training, there were non-linear relations between mothers' inattention and observations of mother-child behavior, with mothers who reported moderate levels of inattention engaging in the most negative parent-child interactions. After parent training, these relations were linear, with the mothers who reported the most inattention engaging in the most negative parent-child interactions. These results were weakened but were generally still significant when parental depression and alcohol use were controlled.
Partnerships in family care : [understanding the caregiving career].
Nolan, M., Lundh, U., Grant, G., & Keady, J.
(2003)
Patterns of interaction between children with physical disabilities using augmentative and alternative communication systems and their peers
Clarke, M., & Kirton, A.
(2003)
Developing peer relationships in school is an essential part of growing up. Many children who have little or no functional speech are provided with augmentative and alternative communication (AAC) systems such as speech synthesizers and books and charts of symbols/pictures/words. Such children face many barriers to communication and to developing peer relationships. To date there exists little understanding of the characteristics of interaction between children using AAC and their speaking peers. This paper reports findings from an analysis of interactions between 12 children with physical disabilities using AAC systems and their speaking peers in school. Analysis identifies the primary structures, functions, and modes of communication used by both partners in one-to-one conversation.
Personalförsörjning och kompetensutveckling : IT som stöd i vård och omsorg : Rapport nr 5 från ett interaktivt seminarium inom ITHS-programmet 8 april 2003.
Vårdalstiftelsen
(2003)
Play and expressive therapies to help bereaved children: individual, family and group treatment
Webb, N.B.
(2003)
Different types of expressive therapies permit bereaved children to express and process their feelings through a variety of child‐friendly non‐verbal methods such as art, creative writing, and music. The selection of a particular method depends on considerations related to the particular needs of each child, the circumstances of the death, and the family/community narrative about it. This article demonstrates how expressive therapies may be used in individual, family, or group sessions which, through play and other modes of expression, provide children with an opportunity to communicate feelings about and reactions to their bereavement experiences in symbolic form.
Practitioner Review: Computerized assessment of neuropsychological function in children: clinical and research applications of the Cambridge Neuropsychological Testing Automated Battery (CANTAB)
Luciana M.
(2003)
BACKGROUND:
Computers have been used for a number of years in neuropsychological assessment to facilitate the scoring, interpretation, and administration of a variety of commonly used tests. There has been recent interest in applying computerized technology to pediatric neuropsychological assessment, which poses unique demands based on the need to interpret performance relative to the child's developmental level.
FINDINGS:
However, pediatric neuropsychologists have tended to implement computers in the scoring, but not administration, of tests. This trend is changing based on the work of experimental neuropsychologists who frequently combine data obtained from test batteries with lesion or neuroimaging data allowing descriptions of brain-behavior relations to be made with increasing confidence. One such battery is the Cambridge Neuropsychological Testing Automated Battery (CANTAB), and current studies in which the CANTAB has been used to measure executive functions in children are reviewed.
CONCLUSIONS:
Computerized batteries of this type can record aspects of performance that are difficult for psychometrists to achieve, and these may reflect activity in developing neural networks with more sensitivity than can be achieved with traditional tests. However, before computerized test administration becomes a routine part of pediatric neuropsychological assessment, several obstacles must be overcome. Despite these limitations, it is concluded that computerized assessment can improve the field by facilitating the collection of normative and clinical data.
Psychopathology and Substance Abuse in Parents of Young Children With Attention-Deficit/Hyperactivity Disorder
Chronis, A. M., Lahey, B. B., Pelham, W. E., Kipp, H. L., Baumann, B. L., & Lee, S. S.
(2003)
OBJECTIVE:
To compare the prevalence of psychological disorders in parents of young children with and without attention-deficit/hyperactivity disorder (ADHD) and comorbid disruptive behavior disorders (DBD).
METHOD:
Subjects included 98 three- to seven-year-old children with DSM-IV ADHD (68 with ADHD and comorbid oppositional defiant or conduct disorder [ADHD+ODD/CD]) and 116 non-ADHD comparison children recruited in 1995-96 during the first wave of a longitudinal study. Biological mothers were administered interviews to assess ADHD and DBD in their children and mood, anxiety, and substance use disorders in themselves. In addition, they were queried about symptoms of childhood ADHD and DBD, and antisocial personality disorder in themselves and their children's biological fathers.
RESULTS:
Child ADHD was associated with increased rates of maternal and paternal childhood ADHD relative to comparison children. Child ADHD+ODD/CD was associated with maternal mood disorders, anxiety disorders, and stimulant/cocaine dependence, and paternal childhood DBD. Mothers of children with ADHD+ODD/CD also reported increased drinking problems in their children's fathers.
CONCLUSIONS:
These findings indicate that many young children with ADHD, particularly those with comorbid ODD/CD, require comprehensive services to address both their ADHD and the mental health needs of their parents.
Psychopathology and Substance Abuse in Parents of Young Children With Attention-Deficit/Hyperactivity Disorder
Chronis, A. M., Lahey, B. B., Pelham, W. E., Kipp, H. L., Baumann, B. L., & Lee, S. S.
(2003)
OBJECTIVE:
To compare the prevalence of psychological disorders in parents of young children with and without attention-deficit/hyperactivity disorder (ADHD) and comorbid disruptive behavior disorders (DBD).
METHOD:
Subjects included 98 three- to seven-year-old children with DSM-IV ADHD (68 with ADHD and comorbid oppositional defiant or conduct disorder [ADHD+ODD/CD]) and 116 non-ADHD comparison children recruited in 1995-96 during the first wave of a longitudinal study. Biological mothers were administered interviews to assess ADHD and DBD in their children and mood, anxiety, and substance use disorders in themselves. In addition, they were queried about symptoms of childhood ADHD and DBD, and antisocial personality disorder in themselves and their children's biological fathers.
RESULTS:
Child ADHD was associated with increased rates of maternal and paternal childhood ADHD relative to comparison children. Child ADHD+ODD/CD was associated with maternal mood disorders, anxiety disorders, and stimulant/cocaine dependence, and paternal childhood DBD. Mothers of children with ADHD+ODD/CD also reported increased drinking problems in their children's fathers.
CONCLUSIONS:
These findings indicate that many young children with ADHD, particularly those with comorbid ODD/CD, require comprehensive services to address both their ADHD and the mental health needs of their parents.
På väg mot en god demensvård. Samhällets insatser för personer med demenssjukdomar och deras anhöriga. Departementspromemorian. Ds 2003:47
Socialdepartementet
(2003)
Relatives are a resource, but … registered nurses views and experiences of relatives of residents in nursing homes
Hertzberg, Annika, Ekman, Sirkka-Liisa & Axelsson, Karin
(2003)
Rättigheter & möjligheter – en guide till samhällsstöd för barn och ungdomar med funktionshinder och deras familjer
Ingmanson, Anna
(2003)
Samhörighet och plikt : Om anhörigvårdare med icke-svensk bakgrund (Rapport / FoU i Väst, 2003:4).
Hildeblom, E.
(2003)
Samtal i självhjälpsgrupp – få kraft och stöd av andra i samma situation.
Essén, Charlotte
(2003)
Känslan av total isolering i en krissituation kan ibland vara lika förödande som själva orsaken till krisen. Den som själv är drabbad eller har varit i samma situation kan bättre förstå hur det känns- det är grundtanken bakom fenomenet självhjälpsgrupper.
Journalisten Charlotte Essén har i sin bok samlat en mängd fakta kring självhjälpsgrupper: varför de behövs, hur de har utvecklats, hur de fungerar etc. Hon har även sammanställt en utförlig lista- den första i sitt slag- över alla de grupper som finns i Sverige idag, sorterade under ämnesrubriker, vilket gör boken till en användbar handbok för den som söker hjälp eller vill starta en ny grupp.
Samverkan kring föräldrar med utvecklingsstörning eller andra intellektuella begränsningar. Kartläggning av stödbehov som grund för metodutveckling och uppbyggnad av kunskapscentrum
Olson, Lena & Springer, Lydia
(2003)
Social care in Finland: Stronger and Weaker Forms of Universalism.
Kröger, T., Anttonen, A. & Sipilä, J.
(2003)
Social cognitive theory and exercise of control over HIV infection
Bandura, A.
(2003)
Socio-Communicative Variables and Behavior States in Students with Profound and Multiple Disabilities: Descriptive Data from School Settings
Arthur, M.
(2003)
Assessment of student behavior states and contextual variables has emerged as a promising area for research and practice in the education of individuals with profound and multiple disabilities. This paper presents findings of an observational study of ten school-aged students in this population, with particular attention being paid to social and communicative variables operating in educational settings. Comparisons are made with other published studies of behavior state assessment and socio-communicative processes observed in special education programs. Implications of these findings are discussed in relation to extant literature and avenues for further investigation in this field. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)
State provision down, offspring’s up: the reverse substitution of old-age care in Sweden.
Johansson, L., Sundström, G. & Hassing, L.
(2003)
”Det borde vara kramar på recept” – en utvärdering av den enskildes inflytande i vård- och stödsituationer inom ramen för Positiv-projektet, Stockholms län
Bromark, Kristina
(2011)
His helping hands-adult daughter's perceptions' of fathers with caregiving responsibility
Eriksson H, Sandberg J, Holmgren J, Pringle K.
(2013)
Women's position as informal carers has been taken for granted in social policy and social professions, while relatively few discussions have elaborated on caring as a later life activity for men and the impact on family care. This study explores the processes connected to informal caregiving in later life through the position of adult daughters of older fathers engaged with long-term caregiving responsibilities for a partner. A sample of eight daughters, with fathers having primary caregiving responsibility for their ill partners was recruited and in-depth interviews were carried out and analysed according to qualitative procedures. The daughters' descriptions of their relationships with their fathers show that being an older man who engages in caring can have a positive outcome on relations. Even if some of the daughters have doubts about their fathers "masculine authenticity", all of them appear to cherish "his helping hands" as a carer and closer more intimate relationships with their fathers. Caring for an old and frail spouse may potentially present alternative ways of being a man beyond traditional 'male activities' and that caring might also sometimes involve a re-construction of gender identities. It is suggested that social work professionals may use a gendered understanding to assess and work strategically with daughters and other family members who support caring fathers.
I väntan på uppehållstillstånd
Björnberg, Ulla
(2013)
Hur barn påverkas av migration är något vi har relativt liten kunskap om, både nationellt och internationellt. I Norden lever de flesta barn sina liv som barn gör mest, i en vardag som rymmer lek, skola och familjeliv. Men det finns erfarenheter som påtagligt påverkar tillvaron för vissa barn; migration är en sådan erfarenhet.
Vilka strategier utvecklar barn för att hantera sin situation i
Identification of core functioning features for assessment and intervention in Autism Spectrum Disorders
Castro S, Pinto AI.
(2013)
Purpose: Framed within a biopsychosocial approach, this study aimed to identify the main functionality dimensions that experts in the field of child development and child psychopathology considered as essential in the assessment-intervention process with young children with Autism Spectrum Disorders (ASD), using the International Classification of Functionality, Disability and Health for Children and Youth. Method: The Delphi method was used to obtain consensus among experts regarding the essential functionality features for the rehabilitation of young children with ASD. Therefore, web-based three-round survey was developed. Results: There are more functionality features identified as more essential for the age group 3–6 than from the group birth-2 years of age. 49.4% of activities and participation dimensions were regarded as essential by experts, while only 13.9% of body functions were selected. 39.9% of environmental factors were also marked by experts as essential. Conclusions: Pervasive Developmental Disorders (PDD) are classified in diagnostic manuals-DSM-IV-TR and ICD-10. These classifications are valuable to detect signs/symptoms of health conditions; however, they are often not sufficient to develop individualized interventions. More functional information is needed to complement diagnostic data. The identified functionality dimensions of the ICF-CY complement diagnosis by differentiating relevant functioning aspects in all life domains, according to the biopsychosocial model and should always be addressed in the process of rehabilitation of young children with ASD.
Implications for Rehabilitation
The biopsychosocial approach is the most complete way of conceptualizing human development and disability; combining medical, social and functional perspectives.
The ICF-CY specifies strengths and areas for improvement in the functionality of each individual, according to the biopsychosocial model of disability.
This paper identifies core functioning features for the rehabilitation of young children with Autism Spectrum Disorders, in all dimensions of life, according to the biopsychosocial approach to disability.
Implementing a training intervention to support caregivers after stroke: a process evaluation examining the initiation and embedding of programme change
Clarke DJ, Godfrey M, Hawkins R, Sadler E, Harding G, Forster A, et al.
(2013)
Background
Medical Research Council (MRC) guidance identifies implementation as a key element of the development and evaluation process for complex healthcare interventions. Implementation is itself a complex process involving the mobilization of human, material, and organizational resources to change practice within settings that have pre-existing structures, historical patterns of relationships, and routinized ways of working. Process evaluations enable researchers and clinicians to understand how implementation proceeds and what factors impact on intended program change. A qualitative process evaluation of the pragmatic cluster randomized controlled trial; Training Caregivers after Stroke was conducted to examine how professionals were engaged in the work of delivering training; how they reached and involved caregivers for whom the intervention was most appropriate; how did those on whom training was targeted experience and respond to it. Normalization Process Theory, which focuses attention on implementing and embedding program change, was used as a sensitizing framework to examine selected findings.
Results
Contextual factors including organizational history and team relationships, external policy, and service development initiatives, impinged on implementation of the caregiver training program in unintended ways that could not have been predicted through focus on mechanisms of individual and collective action at unit level. Factors that facilitated or impeded the effectiveness of the cascade training model used, whether and how stroke unit teams made sense of and engaged individually and collectively with a complex caregiver training intervention, and what impact these factors had on embedding the intervention in routine stroke unit practice were identified.
Conclusions
Where implementation of complex interventions depends on multiple providers, time needs to be invested in reaching agreement on who will take responsibility for delivery of specific components and in determining how implementation and its effectiveness will be monitored. This goes beyond concern with intervention fidelity; explicit consideration also needs to be given to the implementation process in terms of how program change can be effected at organizational, practice, and service delivery levels. Normalization Process Theory's constructs help identify vulnerable features of implementation processes in respect of the work involved in embedding complex interventions.
Improved Strain and Psychosocial Outcomes for Caregivers of Individuals with Dementia: Findings from Project ANSWERS
Judge KS, Yarry SJ, Looman WJ, Bass DM.
(2013)
This study examined the efficacy of a newly developed intervention, Acquiring New Skills While Enhancing Remaining Strengths (ANSWERS), for family caregivers of individuals with dementia. ANSWERS was designed for dyads comprised of an individual with dementia and his/her family caregiver. Using a strength-based approach, ANSWERS combined educational skills (traditionally used with caregivers) and cognitive rehabilitation skills training (traditionally used with individuals with dementia) into a single protocol for addressing the dyad's care issues and needs. Key domains addressed by the intervention included: education about dementia and memory loss; effective communication; managing memory; staying active; and recognizing emotions and behaviors. This analysis focused on outcomes for caregivers. The Stress Process Model guided the study's hypotheses and design. Caregiving dyads were randomly assigned to the control or intervention conditions. Intervention dyads received 6-curriculum guided sessions with an intervention specialist. Data came from in-person baseline interviews with caregivers conducted prior to randomization and follow-up interviews conducted approximately 14.56 weekspost-baseline. Intervention caregivers, compared to controls, had decreased care-related strain as indicated by lower emotional health strain, dyadic relationship strain, role captivity, and higher caregiving mastery. Additionally, intervention caregivers had improved well-being as indicated by fewer symptoms of depression and anxiety. ANSWERS was efficacious in improving key strain and psychosocial outcomes for caregivers. Features essential to the success of ANSWERS included a strength-based approach for selecting, developing, and implementing care goals, as well as teaching caregivers educational and cognitive rehabilitation skills for addressing care needs.
Improving partnerships with families and carers in in-patient mental health services for older people: a staff training programme and family liaison service
Stanbridge RI, Burbach FR, Rapsey EHS, Leftwich SH, McIver CC.
(2013)
In spite of policies advocating the involvement of families in the care of mental health service users in the UK, there are few examples of initiatives to develop staff confidence and skills in partnership working. This article describes a whole team training initiative and family liaison service to promote family inclusive working on in-patient wards for older people in Somerset, UK. A three-day staff-training programme is described and training outcomes are reported. Staff report a substantial increase in confidence and family meetings held. A pre-and post- training case note audit shows increased consideration of the needs of families. To further increase face to face meetings with families a family liaison service has been established, whereby a staff member with systemic family therapy training joins ward staff to hold family meetings as part of the assessment/admission process. Evaluation of this service has shown it to be effective with positive feedback from families and staff.
Linking Theory with Qualitative Research through Study of Stroke Caregiving Families
Pierce LL, Steiner V, Cervantez Thompson TL, Friedemann ML.
(2013)
Purpose: This theoretical article outlines the deliberate process of applying a qualitative data analysis method rooted in Friedemann's Framework of Systemic Organization through the study of a web-based education and support intervention for stroke caregiving families. Methods: Directed by Friedemann's framework, the analytic method involved developing, refining, and using a coding rubric to explore interactive patterns between caregivers and care recipients from this 3-month feasibility study using this education and support intervention. Specifically, data were gathered from the intervention's web-based discussion component between caregivers and the nurse specialist, as well as from telephone caregiver interviews. Findings and Conclusions: A theoretical framework guided the process of developing and refining this coding rubric for the purpose of organizing data; but, more importantly, guided the investigators' thought processes, allowing them to extract rich information from the data set, as well as synthesize this information to generate a broad understanding of the caring situation.
Links between informal caregiving and volunteering in Sweden: a 17-year perspective
Jegermalm, M., Jeppsson Grassman, E.
(2013)
This article analyses informal caregiving and volunteering in organizations over 17 years in Sweden, with a focus on links between these two forms of unpaid activities. The discussion is based on results from a national survey that was repeated four times in the period 1992–2009. Links were found between the different types of activities. In all four studies a substantial group of the population was involved both in informal caregiving and volunteering. This group of 'active citizens' are commonly also engaged in informal social networks. This 'double active' group had increased over time and they provide a substantial amount of hours of involvement. Patterns outlined in this article demonstrate that unpaid activities represent a multifaceted phenomenon, and that the boundaries between informal caregiving and volunteering as forms of engagement may be more fluid than has previously been acknowledged. The results challenge the literature in which informal caregiving is viewed as a major obstacle to volunteering. At the same time, however, informal caregiving in general was found to be increasing. There might be reasons to be cautious about the possible risk that too much pressure on citizens for informal caregiving might jeopardize the type of double involvement that is outlined in this article.
Denna artikel analyserar informellt omsorgsgivande och ideella insatser i frivilligorganisationer i Sverige i ett 17-årigt perspektiv. Diskussionen är baserad på resultaten från en nationell befolkningsstudie som genomförts fyra gånger 1992–2009. Resultaten visade att det fanns beröringspunkter mellan olika former av obetalda insatser. I alla fyra studier var det vanligt att vara engagerad både i informellt hjälparbete och ideella insatser. Denna grupp av 'aktiva medborgare' var vanligtvis också engagerad i informella sociala nätverk. Denna 'dubbel-aktiva' grupp har ökat över tid och de utför många timmar av engagemang per månad. Resultaten utmanar den litteratur som menar att informellt hjälparbete är ett omfattande hinder för att engagera sig i ideella insatser. En möjlig tolkning av de ganska flytande gränserna mellan informell omsorg och ideellt arbete är att välfärdens organisering i Sverige hittills har gett möjlighet för informella omsorgsgivare att ha utrymme och tid för engagemang i ideella organisationer och annat samhällsengagemang, liksom för de ideellt aktiva att utföra informellt omsorgsarbete. Det kan finnas skäl att uppmärksamma risken för att ett ökat tryck på medborgarna att utföra oavlönat arbete, framför allt av omsorgskaraktär, kan försvåra möjligheterna för denna typ av dubbla engagemang.
Literacy Through Symbols: Improving access for children and adults
Detheridge, T., & Detheridge, M.
(2013)
This second edition of an important and essentially practical book is now fully updated and revised to take into account the significant developments that have been made in using symbols to support literacy. It is full of ideas and examples of the ways in which access to literacy can be enhanced through the use of symbols, based on the experience of the authors and many practitioners. Topics covered include how symbols are being used in schools, colleges and day care centers; ways in which symbols can help to enhance learning and independence; lots of new examples of good practice from practitioners; the results of the Rebus Symbol development project; how symbols fit in with the National Literacy Strategy; and how symbols can be used to make information more accessible.
Teachers in mainstream and special schools, teaching assistants, day-care workers and parents should find this book helps them understand how to use symbols to improve literacy and aid communication.
Living in Liminality – Being Simultaneously Visible and Invisible: Caregivers´ Narratives of Palliative Care
Dahlborg Lyckhage, E., & Lindahl, B.
(2013)
Palliative care is an integral part of care and takes place in many settings—including the home, special accommodations, and hospitals. However, research shows that palliative care often ends with a death in the hospital due to the heavy burden on the primary caregiver. This study explores the meaning of being the primary caregiver of a close one who is terminally ill and is based on qualitative interviews with six primary caregivers of a terminally ill individual at home. The findings are discussed in the light of the theoretical concepts of liminality, lived body, and power. A potential impending risk exists of being abandoned when one is the primary caregiver to a close one who is terminally ill. This situation calls for professional caregivers to take responsibility and to respond to these, often unspoken, needs. This is particularly important concerning bodily care and the medical treatment regimen. In addition, when friends and relatives are absent, there is an ethical demand on professional caregivers to compensate for this lack and to compensate for this need. Palliative home care demands care that is person-centered—including the individual's history, family and loved ones, and individual strengths and weaknesses.
Lära tillsammans - samarbetsorienterat lärande för ökad delaktighet
Hammar L.
(2013)
De positiva effekter som fysisk aktivitet har på
hälsa och självkänsla är idag allmänt kända. Att
vara delaktig i lek och fysiska aktiviteter har också
en viktig social betydelse för barns och ungdomars
utveckling.
Forskning visar att elever som är delaktiga i
fysiska aktiviteter i högre utsträckning utvecklar
sociala relationer och stärker sitt självförtroende,
vilket även påverkar självkänslan och självbilden
positivt. (Moser och Dudas, 1997)
Denna skrift är framtagen efter att vi i Specialpedagogiska
skolmyndigheten tillsammans med
forskare gjort en studie kring samarbetsorienterat
lärande och vägledande kamrater. Vi vet att många
elever med någon funktionsnedsättning upplever
att de inte alltid får förutsättningar att vara delaktiga
i olika aktiviteter eller i gemenskapen under
skoldagen. Särskilt tydligt har det visat sig i ämnet
idrott och hälsa.
Skolinspektionens ämnesrapport för idrott och
hälsa (2012) lyfter fram att det sällan finns tillgång
till specialpedagogiskt stöd i ämnet. Rapporten
pekar också på att idrottslärare ofta är bra på att
uppmuntra eleven men inte på att anpassa undervisningen
eller aktiviteterna. I rapporten framkommer
även att elever med funktionsnedsättning ofta inte
deltar fullt ut i undervisningen.
Med denna bakgrund ville vi titta närmare på
om man kan påverka delaktigheten mellan elever
med och utan funktionsnedsättning på idrottslektionerna.
Vi var även intresserade av att se om
det påverkade klassklimatet och engagemanget
i aktiviteterna.
Det kommer allt mer forskningsresultat som
visar positiva effekter av elevers kompetens att
samarbeta och hjälpa varandra. I vår och liknande
studier kan vi se att samarbetsorienterat lärande,
tillsammans med pedagogers medvetna förhållningssätt,
kan ge goda möjligheter att påverka
klassklimat och gemenskap. Vi vill därför dela med
oss av våra lärdomar från denna och liknade studier.
I denna skrift ger vi främst exempel från ämnet
idrott och hälsa, men vi ser också att dessa lärdomar
är överförbara på andra ämnen och områden
i skolans verksamhet.
Vi vill även lyfta fram begrepp och synsätt som
vi tror att många skolor kan ha nytta av i sitt arbete
kring att skapa en tillgänglig och inkluderande miljö.
Under hösten 2013 kommer studien att publiceras
som en vetenskaplig artikel i European Journal of
Special Needs Education. Artikeln heter Cooperative
oriented Learning in Inclusive Physical Education.
Författare till artikeln är Aija Klavina, Associate Professor
vid Academy of Sport Education i Lettland,
Kajsa Jerlinder, universitetslektor vid högskolan i
Gävle, Lars Kristén, universitetslektor vid högskolan
i Halmstad, Lena Hammar, rådgivare vid Specialpedagogiska
skolmyndigheten och Tine Soulie,
konsulent vid Handikappidrottens Videncenter
i Danmark.
Marketisation in Nordic eldercare: a research report on legislation, oversight, extent and consequences
Meagher G, Szebehely M, editors
(2013)
The Nordic countries share a tradition of universal, tax-financed eldercare services, centred on public provision. Yet Nordic eldercare has not escaped the influence of the global wave of marketisation in recent years. Marketinspired measures, such as competitive tendering and user choice models, have been introduced in all Nordic countries, and in some countries, there has been an increase of private, for-profit provision of care services. This report is the first effort to comprehensively document the process of marketisation in Sweden, Finland, Denmark and Norway. The report seeks to answer the following questions: What kinds of market reforms have been carried out in Nordic eldercare systems? What is the extent of privately provided services? How is the quality of marketised monitored? What has the impact of marketisation been on users of eldercare, on care workers and on eldercare systems? Are marketisation trends similar in the four countries, or are there major differences between them? The report also includes analyses of aspects of marketisation in Canada and the United States, where there is a longer history of markets in care. These contributions offer some perhaps salutary warnings for the Nordic countries about the risks of increasing competition and private provision in eldercare. The authors of this report, representing seven countries, are all members of the Nordic Research Network on Marketisation in Eldercare (Normacare). The report has been edited by Professor Gabrielle Meagher, University of Sydney and Professor Marta Szebehely, Stockholm University. Our hope is that the report will provide both a foundation and an inspiration for further research on change in Nordic eldercare.
Maternal parenting behaviors and adolescent depression: The mediating role of rumination
Gaté, M. A., Watkins, E. R., Simmons, J. G., Byrne, M. L., Schwartz, O. S., Whittle, S., et al.
(2013)
Substantial evidence suggests that rumination is an important vulnerability factor for adolescent depression. Despite this, few studies have examined environmental risk factors that might lead to rumination and, subsequently, depression in adolescence. This study examined the hypothesis that an adverse family environment is a risk factor for rumination, such that the tendency to ruminate mediates the longitudinal association between a negative family environment and adolescent depressive symptoms. It also investigated adolescent gender as a moderator of the relationship between family environment and adolescent rumination. Participants were 163 mother–adolescent dyads. Adolescents provided self-reports of depressive symptoms and rumination across three waves of data collection (approximately at ages 12, 15, and 17 years). Family environment was measured via observational assessment of the frequency of positive and aggressive parenting behaviors during laboratory-based interactions completed by mother-adolescent dyads, collected during the first wave. A bootstrap analysis revealed a significant indirect effect of low levels of positive maternal behavior on adolescent depressive symptoms via adolescent rumination, suggesting that rumination might mediate the relationship between low levels of positive maternal behavior and depressive symptoms for girls. This study highlights the importance of positive parenting behaviors as a possible protective factor against the development of adolescent rumination and, subsequently, depressive symptoms. One effective preventive approach to improving adolescent mental health may be providing parents with psychoeducation concerning the importance of pleasant and affirming interactions with their children. (PsycINFO Database Record (c) 2013 APA, all rights reserved)(journal abstract)
Min mor slangen og mig
M. LaVilla Labial
(2013)
Denna danska bilderbok bygger på vikten av att prata med barn när deras förälder eller annan vuxen som barnet bor tillsammans med drabbas av psykisk ohälsa.I slutet av boken diskuterar författaren effekterna för barnen och familjen i sin helhet då någon vuxen drabbas av ångest och/eller depression och vad det gör med familjen. Vilka situationer och frågeställningar som kan uppkomma och som behöver förklaras och besvaras för att barnen ska förstå vad som sker. Boken riktar sig till barn mellan 3-10 år.
Boken går att laddda ner på www.issuu.com
More Caregiving, Less Working: Caregiving Roles and Gender Difference
Lee, Y. and F. Tang
(2013)
This study examined the relationship of caregiving roles to labor force participation using the nationally representative data from the Health and Retirement Study. The sample was composed of men and women aged 50 to 61 years (N = 5,119). Caregiving roles included caregiving for spouse, parents, and grandchildren; a summary of three caregiving roles was used to indicate multiple caregiving roles. Bivariate analysis using chi-square and t tests and binary logistic regression models were applied. Results show that women caregivers for parents and/or grandchildren were less likely to be in the labor force than non-caregivers and that caregiving responsibility was not related to labor force participation for the sample of men. Findings have implication for supporting family caregivers, especially women, to balance work and caregiving commitments.
Motiverande samtal: att hjälpa människor till förändring
Miller W, Rollnic S.
(2013)
Detta är en komplett guide till motiverande samtal, MI, metoden som hjälper människor till förändring. Denna tredje utgåva är helt omarbetad och innehåller till största del nytt material eftersom MI genomgått en så snabb och omfattande utveckling.
Boken utgår från fyra centrala processer inom MI att engagera, fokusera, framkalla och planera för förändring. Illustrativa fallbeskrivningar och dialoger visar hur metoden kan användas inom en mängd olika områden. Författarna redogör även för metodens goda vetenskapliga stöd, hur man kan lära sig MI och använda MI tillsammans med andra metoder.
MI utmärks av betoningen på respektfullt samarbete, att väcka klientens egen motivation och att respektera klientens autonomi och val. I denna nya utgåva lyfts även medkänsla, compassion, fram som en viktig del av andan inom MI.
Boken vänder sig till rådgivare, sjuksköterskor, kriminalvårdare, socialsekreterare, coacher, lärare, HR-personal, psykologer, psykoterapeuter och alla andra som vill hjälpa människor till förändring.
Boken är skriven av grundarna till motiverande samtal:
William R. Miller, fil.dr, professor emeritus i psykologi och psykiatri vid universitetet i New Mexico, USA.
Stephen Rollnick, fil.dr, professor i hälso- och sjukvårdskommunikation på medicinska fakulteten vid universitetet i Cardiff, Wales, Storbritannien.
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Motiverande samtal: att hjälpa människor till förändring
Miller W, Rollnic S.
(2013)
Detta är en komplett guide till motiverande samtal, MI, metoden som hjälper människor till förändring. Denna tredje utgåva är helt omarbetad och innehåller till största del nytt material eftersom MI genomgått en så snabb och omfattande utveckling.
Boken utgår från fyra centrala processer inom MI att engagera, fokusera, framkalla och planera för förändring. Illustrativa fallbeskrivningar och dialoger visar hur metoden kan användas inom en mängd olika områden. Författarna redogör även för metodens goda vetenskapliga stöd, hur man kan lära sig MI och använda MI tillsammans med andra metoder.
MI utmärks av betoningen på respektfullt samarbete, att väcka klientens egen motivation och att respektera klientens autonomi och val. I denna nya utgåva lyfts även medkänsla, compassion, fram som en viktig del av andan inom MI.
Boken vänder sig till rådgivare, sjuksköterskor, kriminalvårdare, socialsekreterare, coacher, lärare, HR-personal, psykologer, psykoterapeuter och alla andra som vill hjälpa människor till förändring.
Boken är skriven av grundarna till motiverande samtal:
William R. Miller, fil.dr, professor emeritus i psykologi och psykiatri vid universitetet i New Mexico, USA.
Stephen Rollnick, fil.dr, professor i hälso- och sjukvårdskommunikation på medicinska fakulteten vid universitetet i Cardiff, Wales, Storbritannien.
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Myocardial infarction after the death of a sibling: A nationwide follow-up study from Sweden
Rostila, M. and Saarela, J., & Kawachi, I.
(2013)
Death of a sibling represents a stressful life event and could be a potential trigger of myocardial infarction (MI). We studied the association between loss of an adult sibling and mortality from MI up to 18 years after bereavement.
We conducted a follow-up study for Swedes aged 40 to 69 years between 1981 and 2002, based on register data covering the total population (N=1 617 010). Sibling deaths could be observed from 1981 and on. An increased mortality rate from MI was found among women (1.25 CI 1.02 to 1.54) and men (1.15 CI 1.03 to 1.28) who had experienced death of an adult sibling. An elevated rate some years after bereavement was found among both women (during the fourth to sixth half-years after the death) and men (during the second to sixth half-years after the death), whereas limited support for a short-term elevation in the rate was found (during the first few months since bereavement). External causes of sibling death were associated with increased MI mortality among women (1.54 CI 1.07 to 2.22), whereas nonexternal causes showed associations in men (1.23 CI 1.09 to 1.38). However, further analyses showed that if the sibling also died from MI, associations were primarily found among both women (1.62 CI 1.00 to 2.61) and men (1.98 CI 1.59 to 2.48).
Our study provided the first large-scale evidence for mortality from MI associated with the death of a sibling at an adult age. The fact that findings suggested associations primarily between concordant causes of death (both died of MI) could indicate genetic resemblance or shared risk factors during childhood. Future studies on bereavement should carefully deal with the possibility of residual confounding.
Nationellt kunskapsstöd för god palliativ vård i livets slutskede. Vägledning, rekommendationer och indikatorer. Stöd för styrning och ledning.
Socialstyrelsen
(2013)
Detta nationella kunskapsstöd ska stödja vårdgivarna att utveckla den palliativa vården, underlätta uppföljning och kvalitetssäkring samt tillgodose en likvärdig vård för patienterna. Socialstyrelsens kunskapsstöd och det nationella vårdprogrammet för palliativ vård, som tagits fram av professionen själv, kompletterar varandra och kan tillsammans utgöra en gemensam grund för ett gott omhändertagande av personer i livets slutskede.
De primära målgrupperna för kunskapsstödet är beslutsfattare inom hälso- och sjukvården och socialtjänsten, såsom politiker, chefstjänstemän och verksamhetschefer. En annan viktig målgrupp är professionen.
Kunskapsstödet fokuserar på palliativ vård i livets slutskede.
En gemensam uppfattning om vårdens innehåll underlättar samordning
En god palliativ vård utgår från de fyra hörnstenarna symtomlindring, multiprofessionellt samarbete, kommunikation och relation samt stöd till närstående. Vården ska omfatta alla, oavsett ålder och diagnos.
För att underlätta planering, ansvarsfördelning och samordning mellan olika aktörer behöver hälso- och sjukvården och socialtjänsten utforma sin palliativa vård och omsorg efter de fyra hörnstenarna och ha en gemensam utgångspunkt i processen för god palliativ vård.
Det har också betydelse att hälso- och sjukvården och socialtjänsten använder termer och definitioner om palliativ vård på ett konsekvent och systematiskt sätt. Det är en förutsättning för förbättrad informationsöverföring och dokumentation, och därmed för en säker vård för patienten. För att underlätta detta arbete har Socialstyrelsen har tagit fram ett antal termer och definitioner om palliativ vård i livets slutskede.
En anpassad palliativ vård
Den palliativa vården i livets slutskede behöver vidgas till att omfatta fler diagnoser än cancer, som den palliativa vården traditionellt har utgått från, och integreras i vården av kroniska sjukdomar. Det är angeläget för att bland annat kunna möta de äldres behov. Symtomlindring, självbestämmande, delaktighet och det sociala nätverket är väsentliga delar för livskvaliteten och för en god vård i livets slutskede.
Barn som får palliativ vård behöver, precis som vuxna, vårdas utifrån sina individuella behov. Det är angeläget att personal inom vård och omsorg som ger palliativ vård till barn har kunskap om och kompetens i att kommunicera med barn.
Samordning krävs på alla nivåer
Samordning är en grundläggande förutsättning för en god palliativ vård. Hälso- och sjukvården och socialtjänsten ska samordna sina olika insatser så att vården och omsorgen blir av god kvalitet för den enskilda patienten.
Svårt sjuka personer är ofta särskilt beroende av god kontinuitet i vård och omsorg. Vid livshotande tillstånd ska en fast vårdkontakt utses och den fasta vårdkontakten ska vara legitimerad läkare. Inom kommunal hälso- och sjukvård där det inte finns läkare ska den medicinskt ansvariga sjuksköterskan se till att det finns rutiner för att läkare eller annan hälso- och sjukvårdspersonal kontaktas när en patients tillstånd fordrar det.
Hälso- och sjukvården ska också ge information och samråda med patienten om olika behandlingsalternativ. Det har betydelse att informationen anpassas efter personens förmåga att ta till sig det som sägs.
Närstående har rätt att få stöd
Socialtjänsten ska erbjuda stöd till personer som vårdar eller stöder en närstående som är långvarigt sjuk, äldre eller har en funktionsnedsättning. När det gäller barn som har en svårt sjuk och döende förälder ska hälso- och sjukvården uppmärksamma barnets behov av information och stöd.
Det är viktigt att hälso- och sjukvården och socialtjänsten tar ställning till hur ett stöd till närstående bör utformas.
Etiska frågor är centrala i palliativ vård
Vård i livets slutskede kräver ofta etiska överväganden. Det är därför angeläget att vård- och omsorgspersonal får kunskap om etiska principer, förhållningssätt och bemötande, och får möjlighet att samtala om etiska frågor.
Rekommendationer om specifika åtgärder
Socialstyrelsens rekommendationer för palliativ vård i livets slutskede omfattar cirka 30 rekommendationer om specifika åtgärder. Rekommendationerna har tagits fram enligt processen för nationella riktlinjer och fokuserar på symtomlindring och kommunikation.
Socialstyrelsens rekommendationer avser att bidra till att hälso- och sjukvårdens och socialtjänstens resurser används effektivt, fördelas efter behov samt styrs av systematiska och öppna prioriteringsbeslut. Rekommendationerna ska främst ge vägledning för beslut på gruppnivå.
Några rekommendationer har Socialstyrelsen bedömt som särskilt centrala ur ett styr- och ledningsperspektiv. Det gäller exempelvis rekommendationerna om att hälso- och sjukvården och socialtjänsten bör erbjuda
fortbildning och handledning i palliativ vård till personal inom vård och omsorg, i syfte att lindra symtom och främja livskvalitet hos patienter i livets slutskede
regelbunden analys och skattning av smärta hos patienter som har smärta i livets slutskede samt strukturerade bedömningar av patientens symtom, i syfte att ge patienten en så adekvat symtomlindring som möjligt
samtal med patienter om vårdens innehåll och riktning i livets slutskede, i syfte att förebygga oro och missförstånd samt förbättra livskvaliteten hos personer i livets slutskede.
Rekommendationerna och bedömningarna kan få konsekvenser för vården och omsorgen
Socialstyrelsen uppskattar att bedömningarna och rekommendationerna i kunskapsstödet kan få betydande organisatoriska och ekonomiska konsekvenser för hälso- och sjukvården och socialtjänsten, eftersom tillgången till palliativ vård i dag är liten i jämförelse med behovet. Dessutom är den ojämnt fördelad över landet.
När det gäller konsekvenser för rekommendationer om specifika åtgärder bedömer Socialstyrelsen att rekommendationerna om fortbildning och handledning av personal som ger palliativ vård kan få betydande ekonomiska konsekvenser för hälso- och sjukvården och socialtjänsten, eftersom de gäller en så stor grupp. Kostnadsökningen är dock svår att beräkna eftersom det beror på hur många som deltar och hur omfattande fortbildningen och handledningen är.
Rekommendationerna om smärtanalys och regelbunden smärtskattning samt regelbunden användning av symtomskattningsinstrument kan leda till ökade kostnader på kort sikt. Kostnaderna gäller då främst utbildning av personal, anpassning av symtomskattningsinstrument till lokala förhållanden och utveckling av rutiner för användning och dokumentation.
Rekommendationen om att erbjuda samtal med patienter om vårdens innehåll och riktning i livets slutskede kan leda till en kostnadsbesparing för hälso- och sjukvården. Tidsåtgången för samtalen i sig leder endast till marginellt ökade kostnader.
Indikatorer och datakällor
Socialstyrelsen har tagit fram förslag på sex indikatorer och tre utvecklingsindikatorer som ska kunna spegla kvaliteten i den palliativa vården. Indikatorerna ska kunna användas som underlag för uppföljning och utveckling av verksamheter samt för öppen redovisning av hälso- och sjukvårdens och socialtjänstens strukturer, processer, resultat och kostnader.
Ett stort problem för uppföljningen av den palliativa vården är att det i dag saknas datakällor. Det visar bland annat Socialstyrelsens kartläggning av information om personers sista tid i livet från sex olika nationella kvalitetsregister.
Socialstyrelsens bedömning är att de nationella registren kan förbättras, både när det gäller generell information om de avlidna och när det gäller specifikt information om palliativ vård. Till exempel saknas ofta information om var personer avlider, och särskilda palliativa vårdinsatser redovisas i mycket liten utsträckning i registren. En bidragande orsak kan vara att klassifikationen av vårdåtgärder (KVÅ) för närvarande inte medger någon noggrannare beskrivning av vad som görs.
Nationellt kvalitetsregister för habilitering
HabQ
(2013)
HabQ är ett samarbete mellan föreningen Sveriges habiliteringschefer och flertalet regioner/landsting samt Hälsouniversitetet - Avdelningen för fysioterapi i Linköping.
Navigeringskurs för anhöriga till personer med demenssjukdom. En utvärdering av ett projekt på Dalens minnesmottagning. Rapport 2013:6.
Sonde, L., & Gurner, U.
(2013)
Anhörigkonsulenterna i stadsdelarna Enskede-Årsta-Vantör, Farsta, Skarpnäck
och Södermalm, tillsammans med minnesmottagningen vid Capio geriatrik på
Dalens sjukhus, genomförde under hösten 2012 en navigeringskurs för anhöriga.
Målgruppen var anhöriga till personer som nyligen genomgått en minnesutredning.
Syftet med kursen var att ge deltagarna kunskaper om demenssjukdomar
och information om vilka resurser kommun och landsting har för att möta upp de
drabbades och anhörigas behov.
Navigeringskursen gavs som en föreläsningsserie vid sju tillfällen på torsdagseftermiddagar.
Varje tillfälle varade ungefär 90 minuter och genomfördes i minnesmottagningens
lokaler. I navigeringskursen gavs information om demenssjukdomar,
kognition och bemötande, hjälpmedel, krisbearbetning samt om kommunens
stöd till anhöriga.
Stiftelsen Stockholms läns Äldrecentrum fick ett uppdrag att undersöka om navigeringskursen
tillför anhöriga användbar kunskap och ger dem en bättre navigeringsförmåga
i den vård och omsorg som erbjuds.
Undersökningen genomfördes med hjälp av intervjuer med deltagare och anordnare
före och efter navigeringskursen, samt med deltagarna sex månader efter
kursens avslut.
Deltagarna uppskattade navigeringskursen. En majoritet trodde att kursen gjort
dem bättre rustade att möta framtida utmaningar. Att kursen vände sig till både
barn, barnbarn och vänner förutom make/maka var också uppskattat. Samtidigt
var både deltagarna och anordnarna överrens om att navigeringskursen kan och
bör utvecklas.
För kursansvariga är det viktigt att rikta fokus på att för att kunna navigera behöver
anhöriga, förutom kunskap om själva sjukdomen, hjälpmedel och bemö-
tande, även kunskap om hur den vård och omsorgssituation ser ut som de ska
navigera i efter det att minnesutredningen är klar.
I rapporten ges ett antal förslag till förbättring och utveckling av navigeringskursen.
För att öka antalet deltagare bör ett formaliserat erbjudande om kursen ges
till samtliga anhöriga i samband med utskrivning från minnesmottagningen.
Kurstiderna behöver anpassas till förvärvsarbetande anhöriga som nu har svårt
att komma ifrån arbetet. Ett kurskompendium bör tas fram för att hålla informationen
aktuell. Föreläsarskaran behöver breddas utanför kretsen anhörigkonsulenter
och personal från minnesmottagning, t.ex. primärvård, biståndshandläggare
och ansvariga från dagvårdverksamheter, hemtjänst och särskilt boende.
Offspring psychological and biological correlates of parental posttraumatic stress: review of the literature and research agenda
Leen-Feldner, E. W., Feldner, M. T., Knapp, A., Bunaciu, L., Blumenthal, H., & Amstadter, A. B.
(2013)
Millions of individuals with posttraumatic stress disorder (PTSD) are parents. A burgeoning literature suggests that offspring of parents with this condition may be at increased risk for psychological problems. The current paper provides an integrative and comprehensive review of the diverse research literature examining the sequelae of parental posttraumatic stress among offspring. Over 100 studies that evaluated psychological and/or biological variables among children of parents with PTSD are reviewed. Findings suggest parental symptoms of posttraumatic stress are uniquely related to an array of offspring outcomes, including internalizing-type problems, general behavioral problems, and altered hypothalamic-pituitary-adrenal axis functioning. Although very little work has directly evaluated mechanisms of transmission, there is increasing support for genetic and epigenetic effects as well as parenting behaviors. These and other mechanisms are discussed; drawing upon findings from other literatures to consider how parental PTSD may impart psychobiological vulnerability upon offspring. We conclude with a detailed discussion of the methodological strengths and challenges of the extant research, along with a recommended agenda for future research in this important area of study.
Older family carers in rural areas: experiences from using caregiver support services based on Information and Communication Technology (ICT).
Blusi M, Asplund K, Jong M.
(2013)
The aim of this intervention study was to illuminate the meaning of ICT-based caregiver support as experienced by older family carers living in vast rural areas, caring for a spouse at home. In order to access, the support service participants were provided with a computer and high speed Internet in their homes. Semi structured webcam-interviews were carried out with 31 family carers. A strategy for webcam interviewing was developed to ensure quality and create a comfortable interview situation for the family carers. Interviews were analysed using content analyses, resulting in the themes: Adopting new technology with help from others and Regaining social inclusion. The results indicate that ICT-based support can be valuable for older family carers in rural areas as it contributes to improve quality in daily life in a number of ways. In order to fully experience the benefits, family carers need to be frequent users of the provided support. Adequate training and encouragement from others were essential in motivating family carers to use the support service. Access to Internet and webcamera contributed to reducing loneliness and isolation, strengthening relationships with relatives living far away and enabled access to services no longer available in the area. Use of the ICT-service had a positive influence on the relationship between the older carer and adult grandchildren. It also contributed to carer competence and promote feelings of regaining independence and a societal role.
Older family carers in rural areas: experiences from using caregiver support services based on Information and Communication Technology (ICT).
Blusi M, Asplund K, Jong M.
(2013)
The aim of this intervention study was to illuminate the meaning of ICT-based caregiver support as experienced by older family carers living in vast rural areas, caring for a spouse at home. In order to access, the support service participants were provided with a computer and high speed Internet in their homes. Semi structured webcam-interviews were carried out with 31 family carers. A strategy for webcam interviewing was developed to ensure quality and create a comfortable interview situation for the family carers. Interviews were analysed using content analyses, resulting in the themes: Adopting new technology with help from others and Regaining social inclusion. The results indicate that ICT-based support can be valuable for older family carers in rural areas as it contributes to improve quality in daily life in a number of ways. In order to fully experience the benefits, family carers need to be frequent users of the provided support. Adequate training and encouragement from others were essential in motivating family carers to use the support service. Access to Internet and webcamera contributed to reducing loneliness and isolation, strengthening relationships with relatives living far away and enabled access to services no longer available in the area. Use of the ICT-service had a positive influence on the relationship between the older carer and adult grandchildren. It also contributed to carer competence and promote feelings of regaining independence and a societal role.
Paired Reading. Ett försök i sju kommuner med lästräning för familjehemsplacerade barn
Tideman, E., Sallnäs, M., Vinnerljung, B., & Forsman, H.
(2013)
Sju kommuner genomförde ett försök med Paired
Reading (parläsning) med syfte att förbättra läsförmågan
hos familjehemsplacerade barn. I försöket
utbildades familjehemsföräldrar i en enkel metod
som bygger på läsning med barnen 20 minuter/dag,
tre gånger i veckan under en 16-veckorsperiod. Försöket
utvärderades genom jämförelser av barnens
testade läsfärdigheter före (T1) och efter lästräningen
(T2). I jämförelserna minskades testvärdena vid
T2 med ett estimat av tidseffekten (den förbättring
som förväntas även om barnen inte hade deltagit i
försöket). Dessutom samlade vi in information om
hur läsningen fungerade i familjehemmen. Rapporten
baseras på analyser av 81 barn, huvudsakligen
placerade i långvarig familjehemsvård, som gick i
årskurserna 2-6 (8-12 år).
Två frågor ställdes i utvärderingen:
1. Är det möjligt att genomföra ett program där
familjehemsföräldrar regelbundet och under en längre
sammanhängande tid läser med de placerade barnen?
Ja, det är möjligt. Bortfallet var mycket lågt
(2.4% bland de som påbörjade försöket) och enligt
familjehemmens rapportering läste den stora
majoriteten (90%) minst mellan två och tre gånger/
vecka, det vill säga de hade enligt vår bedömning
genomfört programmet på ett godtagbart sätt.
2. Förbättrar Paired Reading barnens läsförmåga?
Oavsett ålder/årskurs fick barnen vid T2 bättre
resultat på testerna där läsåldern graderades (LäSt
NonOrd och LäSt Ord). Förbättringen motsvarade
i genomsnitt 11 månader. Om man räknar bort
tidseffekten förbättrade barnen sin läsålder med
cirka sju månader ("nettoförbättring"). Barnen
förbättrade också sitt ordförråd markant, mätt med
ett deltest i WISC-IV.
Ytterligare två tester administrerades till de
yngre barnen i åk 2-3; Bokstavskedjor och Ordkedjor.
Även dessa testresultat visade på signifikanta
förbättringar över tid. Det innebär att de yngre barnen
förbättrade sin läsförmåga enligt samtliga fem
tester (WISC-IV Ordförråd, Läst NonOrd, LäSt
Ord, Bokstavskedjor och Ordkedjor).
För de äldre barnen i åk 4-6 användes ytterligare
fem tester utöver LäSt Non Ord/LäSt Ord och
Ordförråd i WISC-IV. Av dessa fem tester visade
ett på en statistisk signifikant förbättring (Teckenkedjor)
och ett visade en tendens till förbättring
(Ordkedjor). Tre visade bara på svaga tendenser till
förbättring (Meningskedjor och läsförståelsetesterna
Draken och Isbjörnen). De äldre barnen hade med
andra ord klara förbättringar på fyra av åtta tester
(WISC- IV Ordförråd, LäSt NonOrd och LäSt
Ord samt Teckenkedjor), en tendens till förbättring
på ett test (Ordkedjor) men bara svaga tendenser
till förbättring på tre tester (Meningskedjor, Draken
och Isbjörnen).
Sammanfattande slutsats
Paired Reading är ett genomförbart lässtödsprogram
för familjehemsplacerade barn. Det har i
denna före-efterstudie visat sig förbättra läsförmå-
gan hos barn i årskurs 2-6.
Pappa, vad är schizofreni?
Roger Zetterström
(2013)
Den här boken vänder sig till barn och unga som vill lära sig om de vanligaste psykiska sjukdomarna. Boken berättar enkelt och översiktligt hur 12 psykiska sjukdomar yttrar sig och hur de behandlas.
Roger Zetterström, bokens författare, är skötare i psykiatri och socionom, han arbetar som personligt ombud för vuxna med långvarig psykisk ohälsa.
Parental styles in the intergenerational transmission of trauma stemming from the Khmer Rouge regime in Cambodia
Field, N. P., Muong, S., & Sochanvimean, V.
(2013)
The impact of parental styles in intergenerational transmission of trauma among mothers who survived the Khmer Rouge regime in Cambodia, in power from 1975 to 1979, and their teenaged children was examined in 2 studies. In Study 1, 46 Cambodian female high school students and their mothers were recruited. Each daughter completed anxiety and depression measures as well as assessment of her mother's role-reversing, overprotective, and rejecting parental styles, whereas the mothers completed measures of their trauma exposure during the Khmer Rouge regime and PTSD symptoms. In support of trauma transmission, the mother's PTSD symptoms were predictive of her daughter's anxiety. Moreover, the mother's role-reversing parental style was shown to mediate the relationship between her own and her daughter's symptoms. In support of their generalizability, the results were replicated in Study 2 in a Cambodian-American refugee sample comparing 15 mental health treatment-seeking mothers and their teenaged children with 17 nontreatment-seeking mother–child pairs. The implications of the findings within the larger literature on intergenerational trauma transmission stemming from genocide are discussed.
Parenting in Recovery Program: Participant Responses and Case Examples.
Thompson S, Roper C, Peveto L.
(2013)
Approximately 80% of children served by child welfare agencies have parents who abuse or are dependent on alcohol or illicit drugs. Despite the devastating effects on children from living in substance abusing families, child protective service practitioners have limited options available to assist these families. The Parenting in Recovery program was created to address the needs of substance-abusing mothers involved in child welfare. This manuscript describes this program and perceptions of participants concerning its effectiveness.
Participants' experiences of an early cognitive behavioral intervention for adolescents with symptoms of depression
Bru, L., Solholm, R., & Idsoe, T.
(2013)
Cognitive–behavioral therapy (CBT) has been documented to be effective in treating depression in adolescence, but there is great variability in the clinical outcome of CBT trials. This may in part be due to variations in the content of, and emphasis on different CBT components. Moreover, little is known about adolescents' subjective experiences of CBT interventions, which also might be related to outcome. In this qualitative study, nine adolescents were interviewed about their experiences of the specific components in a CBT group intervention. The results showed that the adolescents experienced the cognitive component of the course as most useful, but somewhat difficult to use. Psycho-education, behavioral activation and the social relationships component were also experienced as beneficial. Their experiences regarding the relaxation training and the homework assignments were mixed. Negative aspects of the intervention included the experience of guilt related to being depressed. (PsycINFO Database Record (c) 2013 APA, all rights reserved)(journal abstract)
Psychosocial intervention for family caregivers of people with dementia reduces caregiver´s burden: development and effect after 6 and 12 months
Andrén, S., & Elmståhl, S.
(2008)
A number of different intervention programmes have been described in the literature for caregivers of people with dementia, but the nature of intervention has varied widely. The aim of the present study was to evaluate the efficacy of psychosocial intervention on family caregiver's level of burden and satisfaction, and possible influence of the caregiver's relationship and health and the patient's severity of the disease on the effects of intervention. All persons, 70 years and older, from two districts of a municipality (2721 individuals) who were in receipt of any form of social services were invited to participate in a screening of cognitive decline, and 1656 home visits were made. Those with symptoms of cognitive decline, and having a family caregiver, were invited for a further medical examination. Data were analysed from 308 family caregivers: 153 caregivers who underwent intervention and 155 control caregivers who did not. Repeated measures were carried out 6 and 12 months later. Outcomes were measured using instruments that had been tested for reliability and validity, and all patients were diagnosed according to DSM-IV dementia criteria. Caregivers who underwent the psychosocial intervention (5-week programme and 3-month conversation group) reported significantly lower strain and disappointment after 6 months, and this trend remained after 12 months. Satisfaction, measured in terms of purpose, increased in the intervention group and decreased in the control group. The best effect on caregivers in the intervention group was found early in the progression of dementia and in caregivers with impaired health. These findings emphasize the importance of identifying family caregivers early in the caring process to optimize well-being. This study demonstrates that psychosocial intervention with a clearly defined aim that includes giving information and having a conversation group have significant, positive effects on burden and satisfaction for caregivers of people with dementia.
Reconciling partner Care and Paid Work in Finland and Sweden
Leinonen A, Sand A-B.
(2013)
Putting Evidence into Practice: nursing assessment and interventions to reduce family caregiver strain and burden.
Honea, N. J., Brintnall, R., Given, B., Sherwood, P., Colao, D. B., Somers,S. C, et al.
(2008)
Research Design (International Student Edition) - Qualitative, Quantitative, and Mixed Methods Approaches. 4th ed.
Creswell JW.
(2013)
The eagerly anticipated Fourth Edition of the title that pioneered the comparison of qualitative, quantitative, and mixed methods research design is here! For all three approaches, Creswell includes a preliminary consideration of philosophical assumptions, a review of the literature, an assessment of the use of theory in research approaches, and refl ections about the importance of writing and ethics in scholarly inquiry. He also presents the key elements of the research process, giving specifi c attention to each approach. The Fourth Edition includes extensively revised mixed methods coverage, increased coverage of ethical issues in research, and an expanded emphasis on worldview perspectives.
Respite Utilization and Responses to Loss Among Family Caregivers: Relationship Matters
DeCaporale L, Mensie L, Steffen A.
(2013)
Family caregivers of physically and cognitively impaired older adults face multiple challenges when providing care, including responses to tangible and anticipated losses. However, little is known about the grief experiences of family caregivers and how these might differentially influence the care-related behaviors of spouses and adult children. The present study examined the longitudinal relationship between grief reactions in current spousal and adult-children caregivers (N = 72) and in-home respite utilization over 3 months. The Heartfelt Sadness and Longing subscale of the Marwit-Meuser Caregiver Grief Inventory Short Form (S. J. Marwit & T. M. Meuser, 2005) was used to assess the grief experiences of participants, and demonstrated good internal reliability among spousal and adult-child caregivers of older adults with a variety of cognitive and physical conditions. Although there was not an association between spouses' grief subscale scores and later respite use, adult children were more likely to use respite after reporting higher levels of grief reactions. This study contributes to our ongoing understanding of differences between spousal and adult-children caregivers of impaired older adults and also lends further support for the reliability and construct validity of the Heartfelt Sadness and Longing subscale of the Marwit-Meuser Caregiver Grief Inventory.
Riktade psykosociala insater till gravida och småbarnsföräldrar med problematiskt bruk av alkohol och narkotika: en litteraturstudie. Barn som anhöriga 2013:5.
Heimdal K, Karlsson P.
(2013)
I rapporten beskrivs resultaten från en litteraturstudie om riktade psykosociala
insatser till gravida och småbarnsföräldrar (med barn upp till 3 år) som har ett
så kallat problematiskt bruk av alkohol och/eller narkotika. Ovanstående grupper
är viktiga att uppmärksamma, dels för den inverkan det problematiska bruket
kan ha på föräldrarana själva, men framförallt på grund av de negativa effekter
detta kan få för föräldra-barnrelationen samt barnets psykiska hälsa och utveckling.
Syftet med litteraturstiden har varit att identifiera, sammanfatta och värdera
den internationella interventionsforskningen på området. Via sökningar i databaser
återfanns 53 relevanta primärstudier. Av dessa undersökte 27 studier interventioner
riktade till gravida, 14 studier fokuserade på insatser till småbarnsföräldrar,
medan 12 studier beskrev effekter av interventioner som påbörjats
under graviditet och avslutats en tid efter barnets födelse.
Sammantaget undersökte dessa studier ett flertal olika typer av interventioner.
Till de interventioner som studerades mest frekvent hörde bland annat hembesök,
behandlingsinsatser samordnade med mödravård samt insatser fokuserade
på föräldraträning/föräldraförmågor.
De aktuella studiernas sammanvägda resultat pekar dock mot att det råder
stor osäkerhet kring de olika insatstypernas effekter. Avsaknaden av enhetligt
vetenskapligt stöd innebär dock inte att stöd saknas helt; snarare drar de olika
studierna skilda slutsatser kring respektive insats. Därtill är många av studierna
alltför metodologiskt svaga för att det ska vara möjligt att uttala sig om effekter,
samt i vilken utsträckning dessa eventuellt kan vara bestående. En slutsats som
kan dras är därmed att det behövs fler experimentella studier med längre uppföljningstider
på området.
Ur ett svenskt perspektiv är det även angeläget med studier genomförda i en
svensk/nordisk kontext, då skillnaderna mellan länderna avseende tillgång till
mödra- och barnhälsovård begränsar möjligheterna att överföra resultat från
exempelvis amerikanska studier till svenska förhållanden.
Samspråk. Stöd i kommunikation tillsammans med barn med synnedsättning i kombination med ytterligare funktionsnedsättningar
Tobiasson Jackson, G., Gustafsson, I. & Edlund, M.
(2013)
Samtalets betydelse
Svensson J-O.
(2013)
Detta inspirationsmaterial om samtalets betydelse som anhörigstöd bygger på det material som kommit fram i två blandade lärande nätverks diskussioner och dokumentation under åren 2011 till 2013. Sammanlagt genomfördes sex träffar i respektive nätverk. Ur sammanställningarna, har olika teman och frågeställningar identifierats. Dessa teman utgör rubrikerna i detta inspirationsmaterial.
Resultat och erfarenheter från resursenheterna i Teknik och demensprojektet [Elektronisk resurs].
Haraldson, U.
(2008)
Retention of paid related caregivers: who stays and who leaves home care careers?
Benjamin, AE., Matthias, RE., Kietzman, K., Furman, W.
(2008)
School-based support groups for adolescents with a substance-abusing parent.
Gance-Cleveland B, Mays MZ.
(2008)
BACKGROUND Adolescents with substance-abusing parents need interventions to reduce their risk for a variety of problems. School-based support groups (SBSGs) have been proposed to increase resilience in this population. OBJECTIVE The purpose of this study was to evaluate a SBSG for adolescents with substance-abusing parents. STUDY DESIGN The randomized, controlled study was conducted with high-school students (n = 109) to evaluate the impact of SBSGs on resiliency. Resiliency was operationalized as positive physical health, mental health, and risk behaviors in the presence of adverse life events. Data were collected pre- and postintervention. RESULTS Significant improvements in knowledge of substance abuse were noted. Findings suggested gender differences in coping and health outcomes and positive trends in substance use. CONCLUSIONS SBSGs may increase resilience in this at-risk population. However, there were gender differences in response to the intervention, and group facilitators should be aware that participants' gender may influence response to the groups. J Am Psychiatr Nurses Assoc, 2008; 14(4), 297-309. DOI: 10.1177/1078390308321223.
Socio-demographic determinants of caregiving in older adults of low- and middle-income countries
Hosseinpoor AR, Bergen N, Chatterji S.
(2013)
Background: caregivers make substantial contributions to health and social systems, but many low-resource settings lack reliable data about the determinants and experiences of older adults who are caregivers. Objective: we identified socio-demographic determinants of caregiving among older adults of low- and middle-income countries, and compared determinants of specific categories of caregiving tasks. Subjects: a total of 34,289 adults aged 60 or older from a pooled sample of 48 low- and middle-income countries. Methods: prevalence values for caregiving and categories of caregiving tasks were calculated according to socio-demographic variables, for the overall sample and for each study country. Multivariate analyses assessed associations between caregiving variables and socio-demographic determinants, adjusting for health score and country of residence. Results: overall, 15% of older adults provided care, with varying prevalence according to study country. The prevalence of caregiving was significantly higher in women, and among adults aged 60-69, the college educated, the wealthy, those living in a household of two people and urban residents. No prevalence differences were reported for the employment status or health score. The odds of caregiving were greater for women, younger age groups and higher education levels, controlling for confounders. The likelihood of participating in specific categories of caregiving differed by sex, age, marital status, education, employment status and household size, but was not associated with household economic status, area of residence or health score.
Som man frågar får man svar – om stöd till anhöriga
Takter, Martina
(2013)
Sorg, saknad, sammanhang Böcker om barn och ungdomar i svåra livssituationer
Gunilla brink, Anna Lindberg
(2013)
I Sorg - Saknad - Sammanhang har Gunilla Brinck, bibliotekskonsulent vid Länsbiblioteket i Västerbotten, och Anna Lindberg, bibliotekarie på sjukhusbiblioteket vid Norrlands Universitetssjukhus Umeå, samlat och kommenterat ca 300 böcker, huvuddelen skönlitteratur, om barn och ungdomar i svåra livssituationer. Kati Falk, med 25 års erfarenhet av barnpsykiatri, de senaste 10 åren på BUP:s Kris- och Konsultteam i Lund, visar i en inledande artikel på samtalets betydelsefulla roll för att hjälpa barn att hantera det "svåra i livet".
Böckerna är grupperade under tre huvudrubriker:
1. Barn som anhöriga/närstående Förälders/syskons plötsliga död, Sjukdom som leder till döden, Att leva med sjukdom, Självmord m fl,
2. Barn och våld
3. Barn i sjukdom och kris med underrubriker som Att vistas på sjukhus/besöka vårdcentral, Att vara allvarligt sjuk, Psykisk sjukdom m fl.
Strengthening prospects for safe and lasting family reunification: can a Family Drug and Alcohol Court make a contribution?
Harwin J, Alrouh B, Ryan M, Tunnard J.
(2013)
This article examines the contribution of the first Family Drug and Alcohol Court (FDAC) within care proceedings in England and Wales. It asks what FDAC can contribute to family reunification amid concerns about the safety and sustainability of return home and significant changes in care proceedings under the Children and Families Bill of 2013. Features of FDAC as a problem-solving court are outlined and findings of an independent evaluation are presented to consider FDAC's contribution to safe return home at the end of the care proceedings. The likely impact of the Children and Families Bill of 2013 on FDAC's reunification objectives and the rationale for an FDAC aftercare service are discussed. The article concludes that FDAC has the potential to play a useful role in promoting safe reunification at the end of care proceedings. The Children and Families Bill of 2013 creates both opportunities and challenges to the FDAC model in respect of its approach to enhance safe reunification prospects, and adaptations will be necessary. There is a strong case to develop an FDAC aftercare service to help promote lasting reunification and safe and committed parenting.
Keywords:: FDAC, problem-solving courts, family reunification, substance misuse, care proceedings, Children and Families Bill 2013
Study Finds Wives often struggle With Stepchildren Over Caregiving
Hoffman, J.
(2013)
Stöd till personer som vårdar eller stödjer närstående – Lägesbeskrivning 2013
Socialstyrelsen
(2013)
Sedan drygt fyra år tillbaka finns en bestämmelse i 5 kap. 10 § socialtjänstlagen (2001:453), SoL, om att kommunerna ska erbjuda stöd till personer som vårdar och stödjer närstående. Stödet till anhöriga har under denna tid fått en tydligare struktur och integrerats i kommunernas planer och styrdokument. Utbudet av olika typer av stöd till anhöriga har ökat, och kommunerna har inrättat tjänster, förbättrat informationen om stödet och arbetar med att införa ett anhörigperspektiv i alla verksamheter. Detta är en generell bild av socialtjänstens sätt att tillämpa bestämmelsen i SoL. Inom äldreomsorgen bedömer kommunerna att de tillämpar bestämmelsen i stor utsträckning, men i funktionshindersverksamheten och individ- och familjeomsorgen anger två tredjedelar av kommunerna att de tillämpar bestämmelsen i liten utsträckning. Det finns vissa problem med att tillämpa bestämmelsen. Äldreomsorgen har svårt att hitta anhöriga att hjälpa och relativt många anhöriga tackar nej till hjälp. Det kan betyda att handläggarna inte utreder de anhörigas behov av stöd, men det kan också bero på brister i samarbetet mellan handläggarna, anhörigkonsulenten och verksamheterna när det gäller stöd till anhöriga. Funktionshindersverksamheten framhåller ofta att den fokuserar på brukaren i första hand. De flesta brukare får redan hjälp med stöd av LSS, lagen om stöd och service till vissa funktionshindrade (1993: 387), och därmed även deras anhöriga. Kommunerna har däremot svårt att nå hjälptagare som enbart har socialtjänstinsatser och deras anhöriga. På motsvarande sätt uppger individ- och familjeomsorgen att stödet till anhöriga är integrerat i klientarbetet och att bestämmelsen i SoL inte tillför det arbetet något. Den framhåller missbruksvården, där det finns ett stort utbud av stöd till makar, barn och andra familjemedlemmar. Individ- och familjeomsorgen beskriver däremot stora problem med att nå anhöriga till personer inom socialpsykiatrin. Får anhöriga stöd? I dag är det svårt att veta hur många anhöriga som får stöd eftersom detta bara är andra året som Socialstyrelsen samlar in uppgifter om serviceinsatser. Resultaten hittills pekar att olika former av anhörigstöd är en mycket omfattande verksamhet i kommunerna. Det saknas däremot underlag för att beskriva det stöd som ges till anhö-riga efter prövning enligt 4 kap. 1 § SoL. Med dagens dokumentation går det inte att ta fram dessa uppgifter i den officiella statistiken över social-tjänstens insatser. Det är därför angeläget att kunna beskriva biståndsprövade stödinsatser till anhöriga. Socialstyrelsen arbetar på uppdrag av regeringen med att utveckla socialtjänststatistiken och ta fram en plan för statistiken beträffande kommunernas anhörigstöd, hemsjukvård och insatser som inte är biståndsprövade. Hälso- och sjukvården och anhöriga Många anhöriga har långvarig kontakt med akutsjukvården, specialistsjukvården och inte minst primärvården, och därmed spelar sjukvården en viktig roll för både de sjuka och för deras anhöriga. Hittills har kommunerna dock inte lyckats etablera samarbete med hälso- och sjukvården i någon större utsträckning. Socialtjänstens kontakter och initiativ till samverkan leder sällan till ett systematiskt samarbete kring anhörigstödet. Det grundläggande problemet är att det saknas en struktur och rutiner för samarbetet mellan landstinget och socialtjänsten när det gäller stöd till anhöriga. I framtiden kommer dessutom hemsjukvården att vara ett kommunalt ansvar i hela landet, och därmed finns skäl till att utveckla hemsjukvårdens roll när det gäller stöd till anhöriga. Socialstyrelsens slutsatser Socialstyrelsen kan konstatera att lagstiftningen ännu inte har fått tillräckligt genomslag. Det krävs ytterligare arbete för att föra in ett anhörigperspektiv i socialtjänsten och i hälso- och sjukvården. Socialstyrelsens uppföljning visar att kommunerna behöver ytterligare vägledning i hur de ska tillämpa bestämmelsen i SoL. Kommunerna behöver fortsätta att utveckla formerna för bemötandet av anhöriga, utreda de anhörigas behov av stöd i de olika verksamheterna samt utveckla informationen om det stöd som finns att få och se till att den når fram. Hälso- och sjukvården behöver utveckla formerna för bemötande av anhöriga och att erbjuda dem stöd. Det är viktigt att hälso- och sjuk-vården och socialtjänsten samarbetar för den anhörigas och närstå-endes bästa. För att även inspirera hälso- och sjukvården i dess arbete med stöd till anhöriga kommer Socialstyrelsen att fortsätta att sammanställa exempel på hur sådant arbete har byggts upp runt om i landet. Socialstyrelsen kommer att stödja olika patient-, anhörig-, funktionshinders-, frivillig- och pensionärsorganisationers behov av information genom att ta fram en informationsskrift om bestämmelsen. Socialstyrelsen kommer under 2014 att genomföra olika informationsinsatser för att ge kommunerna ytterligare vägledning när det gäller att införa bestämmelsen om stöd till anhöriga.
Stöd till personer som vårdar eller stödjer närstående, Lägesbeskrivning 2013
Socialstyrelsen
(2013)
Kommunernas tillämpning av bestämmelsen
Sedan drygt fyra år tillbaka finns en bestämmelse i 5 kap. 10 § socialtjänstlagen
(2001:453), SoL, om att kommunerna ska erbjuda stöd till personer
som vårdar och stödjer närstående. Stödet till anhöriga har under denna tid
fått en tydligare struktur och integrerats i kommunernas planer och styrdokument.
Utbudet av olika typer av stöd till anhöriga har ökat, och kommunerna
har inrättat tjänster, förbättrat informationen om stödet och arbetar
med att införa ett anhörigperspektiv i alla verksamheter.
Detta är en generell bild av socialtjänstens sätt att tillämpa bestämmelsen
i SoL. Inom äldreomsorgen bedömer kommunerna att de tillämpar bestämmelsen
i stor utsträckning, men i funktionshindersverksamheten och individoch
familjeomsorgen anger två tredjedelar av kommunerna att de tillämpar
bestämmelsen i liten utsträckning.
Det finns vissa problem med att tillämpa bestämmelsen. Äldreomsorgen
har svårt att hitta anhöriga att hjälpa och relativt många anhöriga tackar nej
till hjälp. Det kan betyda att handläggarna inte utreder de anhörigas behov
av stöd, men det kan också bero på brister i samarbetet mellan handläggarna,
anhörigkonsulenten och verksamheterna när det gäller stöd till anhöriga.
Funktionshindersverksamheten framhåller ofta att den fokuserar på brukaren
i första hand. De flesta brukare får redan hjälp med stöd av LSS, lagen
om stöd och service till vissa funktionshindrade (1993: 387), och därmed
även deras anhöriga. Kommunerna har däremot svårt att nå hjälptagare som
enbart har socialtjänstinsatser och deras anhöriga.
På motsvarande sätt uppger individ- och familjeomsorgen att stödet till
anhöriga är integrerat i klientarbetet och att bestämmelsen i SoL inte tillför
det arbetet något. Den framhåller missbruksvården, där det finns ett stort
utbud av stöd till makar, barn och andra familjemedlemmar. Individ- och
familjeomsorgen beskriver däremot stora problem med att nå anhöriga till
personer inom socialpsykiatrin.
Får anhöriga stöd?
I dag är det svårt att veta hur många anhöriga som får stöd eftersom detta
bara är andra året som Socialstyrelsen samlar in uppgifter om serviceinsatser.
Resultaten hittills pekar att olika former av anhörigstöd är en mycket
omfattande verksamhet i kommunerna.
Det saknas däremot underlag för att beskriva det stöd som ges till anhö-
riga efter prövning enligt 4 kap. 1 § SoL. Med dagens dokumentation går
det inte att ta fram dessa uppgifter i den officiella statistiken över socialtjänstens
insatser.
Det är därför angeläget att kunna beskriva biståndsprövade stödinsatser till
anhöriga. Socialstyrelsen arbetar på uppdrag av regeringen med att utveckla
socialtjänststatistiken och ta fram en plan för statistiken beträffande kom-
7
munernas anhörigstöd, hemsjukvård och insatser som inte är biståndsprö-
vade.
Hälso- och sjukvården och anhöriga
Många anhöriga har långvarig kontakt med akutsjukvården, specialistsjukvården
och inte minst primärvården, och därmed spelar sjukvården en viktig
roll för både de sjuka och för deras anhöriga. Hittills har kommunerna dock
inte lyckats etablera samarbete med hälso- och sjukvården i någon större
utsträckning. Socialtjänstens kontakter och initiativ till samverkan leder
sällan till ett systematiskt samarbete kring anhörigstödet.
Det grundläggande problemet är att det saknas en struktur och rutiner för
samarbetet mellan landstinget och socialtjänsten när det gäller stöd till anhö-
riga. I framtiden kommer dessutom hemsjukvården att vara ett kommunalt
ansvar i hela landet, och därmed finns skäl till att utveckla hemsjukvårdens
roll när det gäller stöd till anhöriga.
Socialstyrelsens slutsatser
Socialstyrelsen kan konstatera att lagstiftningen ännu inte har fått tillräckligt
genomslag. Det krävs ytterligare arbete för att föra in ett anhörigperspektiv i
socialtjänsten och i hälso- och sjukvården. Socialstyrelsens uppföljning visar
att kommunerna behöver ytterligare vägledning i hur de ska tillämpa
bestämmelsen i SoL.
• Kommunerna behöver fortsätta att utveckla formerna för bemötandet
av anhöriga, utreda de anhörigas behov av stöd i de olika verksamheterna
samt utveckla informationen om det stöd som finns att få och
se till att den når fram.
• Hälso- och sjukvården behöver utveckla formerna för bemötande av
anhöriga och att erbjuda dem stöd. Det är viktigt att hälso- och sjukvården
och socialtjänsten samarbetar för den anhörigas och närstå-
endes bästa.
• För att även inspirera hälso- och sjukvården i dess arbete med stöd
till anhöriga kommer Socialstyrelsen att fortsätta att sammanställa
exempel på hur sådant arbete har byggts upp runt om i landet.
• Socialstyrelsen kommer att stödja olika patient-, anhörig-, funktionshinders-,
frivillig- och pensionärsorganisationers behov av information
genom att ta fram en informationsskrift om bestämmelsen.
• Socialstyrelsen kommer under 2014 att genomföra olika informationsinsatser
för att ge kommunerna ytterligare vägledning när det
gäller att införa bestämmelsen om stöd till anhöriga.
Substance exposure in utero and developmental consequences in adolescence: A systematic review
Birk Irner, T.
(2013)
BACKGROUND:
The impacts of maternal substance use have been observed in both research and clinical experience. Several studies have shown that preschool children are at heightened risk of developing various cognitive, behavioral, and socioemotional difficulties. Most knowledge has been generated concerning alcohol consumption during pregnancy and the postnatal effects thereof. Less is known about substance use other than alcohol (for instance, opiates, marijuana, and cocaine) during pregnancy and the long-term developmental consequences.
OBJECTIVE:
The aims of this review are to identify relevant published data on adolescents who have been exposed in utero to alcohol and/or other substances and to examine developmental consequences across functions and mental health at this point in life.
METHODS:
PubMed, Embase, and PsychInfo were searched for publications during the period of 1980-2011 and titles and abstracts selected according to prespecified broad criteria.
RESULTS:
Twenty-five studies fulfilled all of the specific requirements and were included in this review. Most research covered prenatal alcohol exposure. Other substances, however, included cocaine, marijuana, opiates, and poly-substances. Results showed that prenatal exposure to alcohol has long-term cognitive, behavioral, social, and emotional developmental consequences depending on amount and timing of exposure in utero. Less evidence exists for long-term consequences of exposure in utero to other substances than alcohol. However, recent brain-imaging studies have provided important evidence of serious effects of other substance exposure on the developing brain and recent follow-up studies have found an association with deficits in language, attention, areas of cognitive performance and delinquent behavior in adolescence.
Support for Young Informal Carers of Persons with Mental Illness: A Mixed-Method Study
Ali, L., Ahlström, B. H., Krevers, B., Sjöström, N., & Skärsäter, I.
(2013)
The aim of this study was to explore how young (16-25 year old) informal carers of a person with a mental illness experience and use support. In a mixed method approach, we interviewed 12 young carers, and 241 completed a self-administered questionnaire. While the young carers strive to maintain control, their main support seems to be others in their lives, who often define the situation differently. The carers said web-support, counseling, and group counseling might be helpful, yet very few had any professional support. Young carers are greatly in need of support and it should be provided.
Systematik för säker evidens
Jansson, F.
(2013)
I slutet av 2012 kom Socialstyrelsen ut
med rapporten Effekter av stöd till anhö
-
riga som vårdar äldre med demenssjukdom
eller sköra äldre – en systematisk översikt.
Syftet med översikten var att utvärdera effekter
av utbildningsprogram, psykosocialt
stöd och kombinationsprogram som ges till
anhöriga som vårdar sköra äldre eller äldre
med demenssjukdom. I översikten under
-
söktes enbart studier som mätt effekter både
för den anhöriga och för
den närstående sjuka.
Så väljer du rätt äldreomsorg. En guide för äldre och anhöriga
Bidö, A. and C. Björck
(2013)
Så väljer du rätt äldreomsorg - en guide för äldre och anhöriga är en enkel och matnyttig guide för dig som funderar på hur du vill ha det när du blir äldre.
Boken ger dig tips och råd när du ska välja äldreomsorg - åt dig själv eller åt en närstående. Den är lätt att slå i och kan läsas från början till slut eller i valda delar beroende på dina behov eller önskemål. Vad finns det för olika slags hjälp att få? Vad har du för rättigheter och vad är rimligt att begära? Vad är viktigt att tänka på när du ska välja mellan olika utförare? Vad gör du som anhörig om du inte är nöjd med den vård som din närstående får? Dessa frågor och många fler besvaras i boken.
Precis som vi behöver information inför till exempel föräldraskap och skolstart behöver vi också vägledning inför ålderdomen. Det kan vara mycket att sätta sig in i, men med boken Så väljer du rätt äldreomsorg får du en bra översikt och en god förberedelse inför dina vägval.
Claes Björck är beteendevetare och konsult med lång erfarenhet som chef både inom den kommunala och inom den privata äldreomsorgen. Anna Bidö är frilansjournalist med många års erfarenhet av arbete som vårdbiträde inom äldreomsorgen.
Teknik för äldre II [Elektronisk resurs] : slutrapport
Dahlberg, R.
(2013)
Teknik för äldre är ett regeringsuppdrag som samordnats av Hjälpmedelsinstitutet. Det har verkat sedan 2007 med en budget om 22 miljoner kronor årligen. Teknik för äldre har stöttat utvecklingen av bra produkter och tjänster som underlättar vardagen och boendet för äldre och anhöriga. Företag, organisationer och kommuner har kunnat ansöka om ekonomiskt stöd för att driva utvecklingsprojekt. 100 projekt har fått stöd inom Teknik för äldre I (2007-2009) och 61 projekt inom teknik för äldre II (2010-2012). Bidrag om sex miljoner kronor vardera har lämnats till kommunala försöksverksamheter i Göteborgs stad, Norrköpings kommun och Västerås stad. Inom Teknik för äldre II har projekt prioriterats som bidragit till tillgängligt boende, bättre stöd till anhöriga och utveckling av äldreomsorgen med hjälp av välfärdsteknologi. Informations- och kommunikationsinsatser har också varit i fokus.
Telecare for Older People: Promoting Independence, Participation, and Identity
Bowes, A. and G. McColgan
(2013)
Drawing on interviews with 76 older people (aged 60 years and older) receiving telecare services at home and in housing with care and 16 family caregivers in West Lothian, Scotland, the authors consider how far telecare can support older people's citizenship goals of independence, participation, and identity. They conclude that although these goals are to some extent supported by telecare, they are also supported by the model of care being applied and limited by aspects of the wider environment, such as ageism. The authors argue that in every case, contextual factors beyond the intrinsic capacities of a technological system and beyond the models of care developed and promoted by a service delivery organization must be explored if the impact of telecare is to be fully understood. Thus, the human use of technology and its moral context are critical to its success or limitation.
The iconicity of picture communication symbols for children with English additional language and mild intellectual disability
Dada, S., Huguet, A., & Bornman, J.
(2013)
The purpose of this study was to examine the iconicity of 16 Picture Communication Symbols (PCS) presented on a themed bed-making communication overlay for South African children with English as an additional language and mild intellectual disability. The survey involved 30 participants. The results indicated that, overall, the 16 symbols were relatively iconic to the participants. The authors suggest that the iconicity of picture symbols could be manipulated, enhanced, and influenced by contextual effects (other PCS used simultaneously on the communication overlay). In addition, selection of non-target PCS for target PCS were discussed in terms of postulated differences in terms of distinctiveness. Potential clinical implications and limitations of the study, as well as recommendations for future research, are discussed.
The impacts of parental loss and adverse parenting on mental health: findings from the national comorbidity survey-replication
Nickerson, A., Aderka, I.M., Bryant, R.A., & Hinton, D.E.
(2013)
There has been much controversy regarding the psychological impact of the death of a parent, partly arising from neglect of potential moderating factors. The present study uses data from the National Comorbidity Survey Replication (NCS-R) to investigate the relative impacts of age at death of parent, adverse parenting practices, and time since loss on mental health outcomes in 2,823 bereaved adults. Logistic regression analyses controlling for sex and race revealed that younger age at the time of parental death was associated with poorer mental health outcomes. Further, adverse parenting practices during childhood were related to greater psychopathology in adulthood. Results also indicated that psychological distress following the death of a parent reduces over time. Notably, each of these factors significantly predicted psychopathology when controlling for all other variables. Findings are discussed in the context of current theories of attachment and psychopathology.
The needs of people with dementia living at home from user, caregiver and professional perspectives: a cross-sectional survey
Miranda-Castillo C, Woods B, Orrell M.
(2013)
Background: Few reports have been published about differences in perspectives on perceived needs among community-residing people with dementia, their family caregivers, and professionals. The aim of this study was to compare these perspectives. Method: During 2006 and 2007, one-hundred and fifty two interviews of people with dementia and their caregivers about the needs of the person with dementia were performed by four professionals using The Camberwell Assessment of Need for the Elderly (CANE). Professionals' views on met and unmet needs of people with dementia were obtained for the total sample, family caregivers' perspectives were gained for 125 people with dementia, and people with dementia's views on their own needs were obtained for 125 persons with dementia. Results: People with dementia reported fewer needs compared with the reports of their caregivers and the professionals. The most frequent unmet needs reported by people with dementia, caregivers and professionals were in the areas of daytime activities, company, and psychological distress; however, people with dementia rated psychological distress as the commonest unmet need. Conclusions: Since the priorities of people with dementia can be different from those of caregivers and professionals, it is important to consider all perspectives when making care plans. Thus, compliance with treatment of people with dementia and also their quality of life could be potentially improved by a more collaborative partnership with them.
The Perception of Meaningfulness and Performance of Instrumental Activities of Daily Living From the Perspectives of the Medically At-Risk Older Adults and Their Caregivers
Dickerson AE, Reistetter T, Gaudy JR.
(2013)
The purpose of the study was to understand the impact of chronic disability on the functional ability of older adults. Thirty older adult participants and their caregivers were asked to identify which instrumental activities of daily living (IADL) are most meaningful and how their disability affected performance. Data collected through individual analysis indicated that the most important IADL tasks were driving and managing medication. Both older adult participants and their caregivers similarly perceived the health condition as significantly affecting the performance of all of the IADLs. However, there was a difference in the perception of the prior level of functioning for managing medication (z = 2.45, p = .024) and phone use (z = 2.26, p = .014). Results arrived at, and to be discussed, were in agreement with previous research findings indicating that complex tasks of daily living, particularly driving, are significant to the older adult's quality of life.
The prevalence and impact of child maltreatment and other types of victimization in the UK: Findings from a population survey of caregivers, children and young people and young adults
Radford, L., Corral, S., Bradley, C., & Fisher, H. L.
(2013)
Abstract
OBJECTIVES:
To measure the prevalence of maltreatment and other types of victimization among children, young people, and young adults in the UK; to explore the risks of other types of victimization among maltreated children and young people at different ages; using standardized scores from self-report measures, to assess the emotional wellbeing of maltreated children, young people, and young adults taking into account other types of childhood victimization, different perpetrators, non-victimization adversities and variables known to influence mental health.
METHODS:
A random UK representative sample of 2,160 parents and caregivers, 2,275 children and young people, and 1,761 young adults completed computer-assisted self-interviews. Interviews included assessment of a wide range of childhood victimization experiences and measures of impact on mental health.
RESULTS:
2.5% of children aged under 11 years and 6% of young people aged 11-17 years had 1 or more experiences of physical, sexual, or emotional abuse, or neglect by a parent or caregiver in the past year, and 8.9% of children under 11 years, 21.9% of young people aged 11-17 years, and 24.5% of young adults had experienced this at least once during childhood. High rates of sexual victimization were also found; 7.2% of females aged 11-17 and 18.6% of females aged 18-24 reported childhood experiences of sexual victimization by any adult or peer that involved physical contact (from sexual touching to rape). Victimization experiences accumulated with age and overlapped. Children who experienced maltreatment from a parent or caregiver were more likely than those not maltreated to be exposed to other forms of victimization, to experience non-victimization adversity, a high level of polyvictimization, and to have higher levels of trauma symptoms.
CONCLUSIONS:
The past year maltreatment rates for children under age 18 were 7-17 times greater than official rates of substantiated child maltreatment in the UK. Professionals working with children and young people in all settings should be alert to the overlapping and age-related differences in experiences of childhood victimization to better identify child maltreatment and prevent the accumulative impact of different victimizations upon children's mental health.
The relationship of job and elder caregiving involvement to work-caregiving interference, and work costs
Gordon J, Rouse ED
(2013)
This article examines the relationship between job and elder caregiving involvement, bi-directional work-caregiving conflict (work interfering with caregiving [WIC] and caregiving interfering with work [CIW]), and work costs (job interruptions and job changes). Specifically, we consider the effects of both behavioral and psychological involvement and external and internal work caregiving conflict in a sample of 583 women between the ages of 50 and 64 who work full-time and have significant elder caregiving responsibilities. A telephone survey was administered using random-digit-dial procedures. Structural equation model analyses confirmed that behavioral job involvement was associated with external CIW, psychological job involvement was associated with internal WIC and internal CIW, behavioral caregiving involvement was associated with external CIW and work costs, and psychological caregiving involvement was associated with internal CIW. Internal WIC, external CIW, and internal CIW were associated with job costs. Some mediation, particularly through external and internal CIW, occurred.
The societal cost of bipolar disorder in Sweden
Ekman et al,
(2013)
PURPOSE:
There is a lack of comprehensive cost-of-illness studies in bipolar disorder, in particular studies based on patient-level data. The purpose of this study was to estimate the societal cost of bipolar disorder and to relate costs to disease severity, depressive episodes, hospitalisation and patient functioning.
METHODS:
Retrospective resource use data in inpatient and outpatient care during 2006-2008, as well as ICD-10 diagnoses and Global Assessment of Functioning (GAF) scores, were obtained from the Northern Stockholm psychiatric clinic with a catchment area including 47% of the adult inhabitants in Stockholm. This dataset was combined with national register data on prescription pharmaceuticals and sick leave to estimate the societal cost of bipolar disorder. The study was conducted from a societal perspective, with indirect costs valued according to the human capital method.
RESULTS:
The average annual cost per patient was 28,011 in 2008 (n = 1,846). Indirect costs due to sick leave and early retirement represented 75%, inpatient costs 13%, outpatient costs 8%, pharmaceuticals 2% and community care another 2% of the total cost. Total costs were considerably higher during mood episodes (six times higher than in remission), for hospitalised patients (55,500 vs. 22,200) and for patients with low GAF scores.
CONCLUSIONS:
The high cost of bipolar disorder is driven primarily by indirect costs. Costs were strongly associated with mood episodes, hospitalisations and low GAF scores. This suggests that treatment that reduces the risk for relapses and hospitalizations and improve functioning may decrease both the societal cost of bipolar disorder and patient suffering.