Increasing functional communication in non-speaking preschool children: Comparison of PECS and VOCA.
Bock, S. J., Stoner, J. B., Beck, A. R., Hanley, L., & Prochnow, J.
(2005)
For individuals who have complex communication needs and for the interventionists who work with them, the collection of empirically derived data that support the use of an intervention approach is critical. The purposes of this study were to continue building an empirically derived base of support for, and to compare the relative effectiveness of two communication intervention strategies (i.e., PECS and the use of VOCA) with preschool children who have complex communication needs. Specific research questions were (a) Which communication strategy, PECS or VOCA, results in a more rapid rate of acquisition of requesting skills for preschool children?, and (b) To what extent do communication behaviors utilizing PECS and VOCA generalize from a pull-out setting to the classroom setting? Results are discussed and clinical implications given.
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.
Forskningscirkeln: Att stärka barns och ungdomars brukarmedverkan i den sociala barnavården
Näsman, E.
(2012)
Fortbildning av förskolekonsulenter i familjeorienterad habilitering: process och utfall
Granlund, Mats & Björck-Åkesson, Eva
(1994)
Foster children: a longitudinal study of placements and family relationships
Andersson, G.
(2009)
Foster children's family relationships have been one of the themes in a longitudinal study, starting with a disadvantaged group of children, 0–4 years of age when taken into care and placed in a children's home in Sweden. Seven rounds of data collection were carried out; the last two when the children were young adults. This article is about those 20 children in the study group who, in addition to temporary residential care at an early age, have experiences from foster care, either for the remainder of their childhood or before or after a period of reunion. Placement history is put in relation to family relationships, i.e. relationships to birth family and foster family. The categorisation in secure and insecure relationships or attachment patterns is based on interviews with the young adults, with a retrospect of previous relationships. The connection between placement history and family relationship is not obvious in this high-risk group. However, inclusive attitudes from the foster family towards the child's family promote continuity and a sense of security, also in periods of reunion or re-placement, and facilitate foster children's hard work in coming to terms with their family background and finding their own way.
Foton från min dag. Om bilder och bilddagböcker – erfarenheter från DIKO-projektet
B. & Andersson, A.
(2014)
Fou-cirkel för utveckling av anhörigstöd erfarenheter från ett länsövergripande projekt (FoU-rapport).
Winqvist, M., & Lerman, B.
(2007)
Framgångsrika preventionsprogram för barn och unga : en forskningsöversikt
Ferrer-Wreder L, Andershed A-K.
(2012)
Den här boken handlar om framgångsrika amerikanska och europeiska preventionsprogram. De har i utvärderingar visat sig minska ungdomars problembeteenden och främja barns sociala utveckling. I boken ges många exempel på välfungerande preventionsprogram som involverar familj, skola och närsamhälle. En bok för socialarbetare, psykologer och folkhälsoplanerare och andra med intresse för förebyggande arbete. Boken har tillkommit på initiativ av IMS, Institutet för utveckling av metoder i socialt arbete.
Framgångsrika preventionsprogram för barn och unga. En forskningsöversikt
Ferrer-Wreder, L.; Stattin, H.; Cass Lorente, C.; Tubman, J.G. & Adamson, L.
(2005)
Den här boken handlar om framgångsrika amerikanska och europeiska preventionsprogram. De har i utvärderingar visat sig minska ungdomars problembeteenden och främja barns sociala utveckling. I boken ges många exempel på välfungerande preventionsprogram som involverar familj, skola och närsamhälle. En bok för socialarbetare, psykologer och folkhälsoplanerare och andra med intresse för förebyggande arbete. Boken har tillkommit på initiativ av IMS, Institutet för utveckling av metoder i socialt arbete.
Framgångsrika preventionsprogram för barn- och unga. En forskningsöversikt.
Ferrer-Wreder L, Stattin H, Cass Lorante C, Tubman JG, Adamsson L.
(2005)
Den här boken handlar om framgångsrika amerikanska och europeiska preventionsprogram. De har i utvärderingar visat sig minska ungdomars problembeteenden och främja barns sociala utveckling. I boken ges många exempel på välfungerande preventionsprogram som involverar familj, skola och närsamhälle. En bok för socialarbetare, psykologer och folkhälsoplanerare och andra med intresse för förebyggande arbete. Boken har tillkommit på initiativ av IMS, Institutet för utveckling av metoder i socialt arbete.
Framtidens anhörigomsorg - kommer de anhöriga vilja, kunna, orka ställa upp för de äldre i framtiden?
Sundström, G., & Johansson, L.
(2004)
Individualization and Institutionalization of Childhood in Today´s Europe
Näsman, E.
(1994)
Frequency of occurrence and child presence in family activities: A quantitative, comparative study of children with profound intellectual and multiple disabilities and children with typical development
Axelsson AK, Wilder J.
(2013)
Objectives:
The objective was to investigate the performance aspect of participation, operationalized as the frequency of occurrence of family activities and child presence in these activities for children with profound intellectual and multiple disabilities (PIMD) and children with typical development (TD). The focus was also on how family and child characteristics are related to the frequency of occurrence of family activities. This is part of a larger research project investigating facilitating factors for participation in children with PIMD.
Methods:
A descriptive, comparative study was performed using a questionnaire developed for the purpose.
Results:
In the families with a child with PIMD, the majority of activities occurred less often than in families with children with TD. In both groups, relationships were found between the frequency of occurrence of family activities and total family income, as well as the educational level of the parents. For children with PIMD, motor ability, cognition, health, and behaviour, were related to frequency of occurrence. Moreover, the presence of the children in the activities differed in the two groups; the children with PIMD were present in the activities less often.
Discussion:
Considering a long-term perspective, low occurrence of family activities and child presence may affect child development and everyday functioning. Knowledge about factors related to the occurrence of family activities and child presence in them, as well as an understanding of its causes, can promote the provision of everyday natural learning opportunities for children with PIMD.
Fri eller förankrad? :En empirisk studie av volontärverksamhet och ideella insatser inom stiftelsen stora Sköndal (Sköndalsinstitutets arbetsrapportserie, 1402-277x ; 30).
Engel, C.
(2003)
Friends in need': designing and implementing a psychoeducational group for school children from druginvolved families.
Dore MM, Nelson-Zlupko L, Kaufmann E. '
(1999)
Despite widespread recognition of the risks that parental drug use pose to children, few resources are available to help such children. Using a developmental intervention approach, the authors designed and tested a model curriculum for use with groups of latency-aged children in schools located in communities where drug use is pervasive. In implementing this curriculum, the authors documented the need that children affected by family drug use have for workable strategies and skills for coping with aversive environments. The responsiveness of group participants to structure, predictability, and affirmation in the groups was remarkable. Measurable changes occurred in classroom behavior and feelings of self-worth. Obstacles to implementing and testing such an intervention are discussed.
Informal and formal home-care use among older adults in Europe: Can cross-national differences be explained by societal context and composition?
Suanet, B.
(2012)
Cross-national comparisons employed welfare state classifications to explain differences in care use in the European older population. Yet these classifications do not cover all care-related societal characteristics and limit our understanding of which specific societal characteristics are most important. Using the Survey of Health, Ageing and Retirement (second wave, 2006–07), the effect of societal determinants relating to culture, welfare state context and socio-economic and demographic composition on informal and formal care use of older adults in 11 European countries was studied. Multinomial multi-level regression analyses showed that, in addition to individual determinants, societal determinants are salient for understanding care use. In countries with fewer home-based services, less residential care, more informal care support and women working full time, older adults are more likely to receive informal care only. Older adults are more likely to receive only formal home care or a combination of formal and informal care in countries with more extensive welfare state arrangements (i.e. more home-based services, higher pension generosity), whereas the odds of receiving a combination of informal and formal care are also larger in countries that specify a legal obligation to care for parents. We tentatively conclude that the incorporation of societal determinants rather than commonly used welfare state classifications results in more understanding of the societal conditions that determine older adults' care use.
Informal care and support for carers in Sweden: Patterns of service receipt among informal caregivers and care recipients
Jegermalm, M.
(2004)
Frivilliga sociala insatser och socialtjänsten i Halland (Meddelandeserien / NFoU- FoU-enheten, kommunförbundet Halland ; 2002:6).
Jönsson, B.
(2002)
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)
Frivilligorganisationerna och anhörigstödet (Anhörig 300).
Dahlberg, L.
(2002)
Frivilligt socialt arbete: kartläggning och kunskapsöversikt
Almberg, B., Grafström
(2001)
Informal care in Sweden: A typology of care and caregivers.
Jegermalm, M.
(2006)
Informal caregivers' conceptions of daily life with a spouse having chronic obstructive pulmonary disease
Lindqvist, G.
(2013)
The overall aim of this thesis was to explore informal caregivers' daily life with particular focus on those living with a spouse who has Chronic Obstructive Pulmonary Disease (COPD) in different grades, mild to severe, based on the ill person's main concern. The study design was explorative, comparative and descriptive. The thesis included a literature review of 45 scientific articles and semi-structured interviews with 23 patients suffering from COPD, and 21 women and 19 men living with a spouse suffering from COPD. Data were analysed using content analysis, grounded theory, and phenomenography. Main findings: Men and women living with a spouse suffering from mild COPD did not experience changes in their daily life, and were not in need of support. It was when the COPD gradually escalated that their daily life was affected and they needed support. The caregiving women conceived that their daily life was socially restricted, they had changed roles, changes in health and changes in the couple's relationship. The caregiving men's daily life was conceived as burdened, restricted and the partner relationship was affected. The men's attitude was to continue with their own life and own activities, and their approach to their caregiving situation was to view themselves as "Me and my spouse". The main concern for people suffering from COPD was feelings of guilt due to self-inflicted disease associated with smoking habits. The thesis shows that there are differences in informal caregiving between males and females. Conclusion: This thesis shows that there are differences in male and female caregiving for a spouse suffering from COPD. The caregivers conceive and handle the caregiving situation in different ways. It is central that health professionals and municipality consider this along with the individual needs that are related to the development of the COPD. There is a need to identify the person who suffers from COPD and their spouses from the first contact onwards, to regularly follow the development of their situation and need of support.
Informal caregivers who are interested and do make use of information and communication technologies
Lindqvist Gunilla, Elizabeth Hanson
(2018)
Abstract
Objective: The aim of the study was to highlight informal caregivers' interest in using the Information and Communication Technology (ICT)-based ACTION service (Assisting Carers using Telematics Interventions to meet Older People's Needs) and their ideas for how to further develop and extend the service. The use of ICT is constantly increasing worldwide. Europe has the highest old age dependency ratio, but other parts of the world are also experiencing a dramatic ageing of their population. The demands for care are increasing, and resources are shrinking. One way to support informal caregivers is through ICT.
Methods: The study employed a qualitative design. Focus group interviews were carried out with informal caregivers in Sweden. The interviews were analysed using a latent content analysis method.
Results: The analysis yielded a major theme, striving to feel confident, with four categories: informal caregivers' reflections and ideas about ICT; promoting their own health process; increasing their knowledge bank and informal caregivers' rights; and striving for inclusiveness.
Conclusions: The present study highlights the challenges that informal caregivers face in their daily life as well as their resources to devise possible solutions that could improve their situation. To preserve their health, a carer support plan including regular health checks could be helpful. ICT-based support (such as the ACTION service) could act as a way forward for supporting informal caregivers in their striving to feel confident. The study highlighted that ICT-based support has the potential to act as a direct benefit for informal caregivers.
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.
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 carer bereavement outcome: relation to quality of end of life support and achievement of preferred place of death
Grande, G. E., & Ewing, G.
(2009)
Informal carers of older family members: how they manage and what support they receive from respite care
Salin, S., Kaunonen, M. & Astedt-Kurki, P.
(2009)
Informal carers of older family members: how they manage and what support they receive from respite care.
Salin, S., Kaunonen, M. & Astedt-Kurki, P.
(2009)
Informal carers: Who takes care of them? Policy Brief April 2010
Hoffman, F. and R. Rodriguez
(2010)
Until recently, informal care (provided by relatives and friends) has been overlooked by policy-makers in the context of long-term care for dependent older people. Driven by concerns about the fiscal sustainability of long-term care services and by more self-conscious and demanding carers' movements across countries, informal care has been brought into the limelight.
Data on carers is still relatively scarce due in part to the nature of the care itself as it is often provided informally at home. In view of this, what do we know about informal carers and who benefits from them? Which country differences exist? Which policies are set in place to support them? This Policy Brief tries to shed light on these issues by using available data from (inter)national sources as well as qualitative information gathered in our recent publication "Facts and Figures on Long-term Care -- Europe and North America". It seeks to increase knowledge on informal carers and discuss some of the implications surrounding social policies that impact them. The analysis is very much policy-oriented and takes a comparative view, focusing mostly on the wider Europe.
Informal caring-time and caregiver satisfaction
Marcén, M. and J. A. Molina
(2012)
This paper examines the role of care decision processes on informal caring-time choices. We focus on three care decisions: the caregiver's own decision, a family decision and a recipient request. Results show that informal caregivers, engaged in care activities as a result of a family decision, are more likely to devote more than 5 h to care activities, even after allowing for endogeneity. Our findings are robust to controlling for a large number of socio-demographic characteristics, including care recipient and caregiver characteristics. Supplemental analysis, developed to explore whether care arrangements are related to informal caregiver's satisfaction, indicates that the family decision heavily penalizes informal caregivers. Given the importance of informal care activities in reducing health care costs, our findings imply that care decision processes should be taken into consideration when formulating health care policies.
Informal elderly care and women´s labour force participation across Europe.
Viitanen, T.
(2005)
This paper uses the European Community Household Panel (ECHP) to analyze the relationship between the dynamics of labour force participation and informal care to the elderly for a sample of women aged 20-59 across 13 European countries. The analysis has two focal points: the relative contributions of state dependence as well as observed and unobserved heterogeneity in explaining the dynamics in women's labour force participation and the existence and consequences of non-random attrition from the ECHP. The results indicate positive state dependence in labour force participation in all 13 EU countries used in the analysis. The share of unobserved heterogeneity accounts for between 45% and 86% of the total variation in labour force participation. Informal care-giving is found to have a significant, negative impact on the probability of employment only in Germany. Nevertheless, analysis of different sub-groups indicates that the impact is largest for middle-aged women and also for single women in several EU countries.
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)
Funksjonshemningen og det normale – om nödvändigheten av å balansere
Solvang, Per
(2000)
Funktionshinder och strategival. Om att hantera sig själv och sin omvärld
Peterson, G., Ekensteen, W & Rydén, O
(2006)
Hur upplever och hanterar vuxna personer med stora rörelsehinder sin situation och sig själva? Hur hanterar funktionshindrade sina kontakter med vårdbyråkratin och med allmänheten? Hur påverkas självbild och livssyn av att leva med stora rörelsehinder? Det bärande temat i Funktionshinder och strategival är en kritik av den medikalisering som beskriver och formar funktionshindrade människors tillvaro; sjukförklaringen, omyndigförklaringen samt dikotomin i starka och svaga. Boken vänder sig emot ett utbrett grundantagande om funktionshindrade människors tragedi och speglar både ett inifrån- och ett utifrånperspektiv så att både de läsare som lever med funktionshinder och de som möter funktionshindrade kan känna igen sig.
Boken vänder sig till universitets- och högskolestuderande inom beteendevetenskap, vård, medicin och sociala områden samt yrkesverksamma som kommer i kontakt med människor med omfattande funktionshinder. Den kan med stor behållning också läsas av personer med funktionshinder och deras anhöriga.
Funktionshinder och välfärd
Szebehely, Marta m.fl
(2001)
Information för närstående till personer med demenssjukdom
Andrén, S., Bonli, A
(2008)
Funktionshinder, samtal och självbestämmande. En studie av brukarcentrerade möten
Karlsson, Kristina
(2007)
Doktorsavhandling
Syftet med avhandlingen är att ur ett medborgarskaps- och kommunikativt perspektiv undersöka och problematisera funktionshindrade "brukares" självbestämmande i samtal som förs under s.k. brukarcentrerade teammöten organiserade av en vuxen- respektive en barn- och ungdomshabilitering. I mötena deltar en funktionshindrad brukare och/eller anhöriga och professionella från skilda verksamheter. Studien baseras på diskursanalys av 18 observerade och bandinspelade möten hållna av tio olika team. Analyserna visar att brukarna hade ett mer eller mindre begränsat inflytande över samtalens organisering. Inflytandet varierade med organiseringen av samtalen samt med i vilken utsträckning brukarna deltog aktivt genom att identifiera egna problem och framtida mål. Det synliggjorde en spänning mellan ett "idealt" självbestämmande och brukarnas förmåga/benägenhet att leva upp till de krav som det "ideala" självbestämmandet ställde och gav upphov till situationer i vilka dilemman mellan självbestämmande och paternalism uppstod. I analyserna av hanterandet av dessa situationer framkom att deltagarna i möten utan deltagande brukare motiverade sina åsikter och beslut rörande behandlingen av brukaren genom att referera till egna övertygelser om vad som är bäst för brukaren respektive till tolkningar av brukarens egna preferenser utifrån hennes/hans agerande i vardagslivet. I möten med deltagande brukare använde övriga deltagare diskursiva strategier som var mer eller mindre paternalistiska då de innebar att de styrde brukaren på ett sätt som det inte var säkert att brukaren själv ville. I avhandlingen diskuteras vilka möjliga strategier som skulle kunna öka brukarnas självbestämmande. Utfallet relateras också till det "samtalande" och sociala medborgarskap som brukarna i avhandlingen anses utöva samt till andra möjliga innebörder av ett socialt medborgarskapsutövande.
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.
Funktionshindrade i välfärdssamhället
Lindqvist, R.
(2012)
Funktionshindrade i välfärdssamhället handlar om funktionshindrades livsvillkor på några centrala områden: arbete och försörjning, vård, omsorg och utbildning, men också om funktionshindrades roll som samhällsmedborgare med anspråk på delaktighet och inflytande.
Bokens fokus ligger till stor del på välfärdssystemets möjligheter och begränsningar relaterade till funktionshindrades villkor. Men det finns naturligtvis en rad andra faktorer som också påverkar medborgarnas villkor som till exempel utvecklingen inom ekonomi och arbetsmarknad och inte minst de attityder och föreställningar vi har om vad det innebär att ha ett funktionshinder.
Den historiska framställningen visar på en utveckling från ett ensidigt individuellt handikappbegrepp, som betonar individens sjukdomar, skador och andra brister som konstituerande för handikappet, till ett mer relativt funktionshinderbegrepp som betonar omgivningens betydelse för om handikapp föreligger eller ej.
Boken vänder sig till studerande på universitet och högskolor, framför allt inom socialt arbete och vårdvetenskap.
Rafael Lindqvist är professor i sociologi, med inriktning funktionshinderforskning, Uppsala universitet.
International Classification of Functioning, Disability and Health Geneva
WHO
(2001)
Stucki G: International Classification of Functioning, Disability, and Health (ICF): A promising framework and classification for rehabilitation medicine. Am J Phys Med Rehabil 2005;84:733–740.
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.
Interpreting the communication of people with profound and multiple learning difficulties
Porter J, Ouvry C, Morgan M, Downs C.
(2001)
The present paper highlights some of the issues involved in interpreting the communication behaviours of people with profound and multiple learning difficulties (PMLDs). Both inference and intention can play an important role in the communication process, and this raises a number of difficulties and dangers where one of the communication partners is not in a position to correct misunderstandings. The present authors discuss the importance of validating communication and pose a number of key questions to ask those who are most significant in the life of a person with PMLDs. A case study is provided that illustrates a number of these issues. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)
Inter-rater Reliability of Activity Limitations by ICF Codes and Qualifiers: ICF Codes Corresponding to FIM
Asakawa Y, Sato Y, Usuda S.
(2010)
[Purpose] This study aimed to evaluate the inter-rater reliability of the evaluation scores of activity limitation in the International Classification of Functioning, Disability and Health (ICF) using the "Criteria for Activities and Participations" proposal. [Subjects] The subjects were 10 patients with cerebrovascular disorders living in a support center for people with disabilities. [Methods] Two physical therapists (PT) classified each evaluation item of the Functional Independence Measure (FIM) into corresponding ICF activity codes. Then, a full-time nurse and a part-time PT scored the activity limitations of each subject and calculated the weighted κ of each evaluated item using a flowchart-type questionnaire for the FIM and the scoring criteria shown in the proposal, "Criteria for Activities and Participations" in ICF. [Results] The range of the weighted κ of each item in FIM was 0.44-1.00, and that of ICF was 0.50-1.00. Our results demonstrate high inter-rater reliability for more than 70% of items scored by both evaluations. [Conclusion] The results of the present study suggest that the ICF scores of activity limitations are sufficiently applicable to clinical practice using the proposal, "Criteria for Activities and Participations".
Intersectional perspectives on family involvement in nursing home care: rethinking relatives' position as a betweenship
Holmgren J, Emami A, Eriksson LE, Eriksson H.
(2014)
This study seeks to understand, in the context of intersectional theory, the
roles of family members in nursing home care. The unique social locus at which
each person sits is the result of the intersection of gender, status, ethnicity
and class; it is situational, shifting with the context of every encounter. A
content analysis of 15 qualitative interviews with relatives of nursing home
residents in Sweden was used to gain a perspective on the relationships between
relatives and residents, relatives and the nursing home as an institution, and
relatives and the nursing home staff. We sought to understand these relationships
in terms of gendered notions of the family and the residents, which are handed
down from generation to generation and thus condition who and how relatives
should be involved in care, and the ways in which relationships change as care
moves from home to nursing home. It requires knowledge and awareness that the
nursing home culture is based on intersectional power structures in order for
relatives to be involved in nursing home care in alternative and individual ways.
Intersectional perspectives on family involvement in nursing home care: rethinking relatives' position as a betweenship.
Holmgren J, Emami A, Eriksson LE, Eriksson H.
(2014)
This study seeks to understand, in the context of intersectional theory, the
roles of family members in nursing home care. The unique social locus at which
each person sits is the result of the intersection of gender, status, ethnicity
and class; it is situational, shifting with the context of every encounter. A
content analysis of 15 qualitative interviews with relatives of nursing home
residents in Sweden was used to gain a perspective on the relationships between
relatives and residents, relatives and the nursing home as an institution, and
relatives and the nursing home staff. We sought to understand these relationships
in terms of gendered notions of the family and the residents, which are handed
down from generation to generation and thus condition who and how relatives
should be involved in care, and the ways in which relationships change as care
moves from home to nursing home. It requires knowledge and awareness that the
nursing home culture is based on intersectional power structures in order for
relatives to be involved in nursing home care in alternative and individual ways.
Intervening With Foster Parents to Enhance Biobehavioral Outcomes Among Infants and Toddlers
DOZIER, M., BICK, J. & BERNARD, K.
(2011)
Children in foster care face a number of challenges that threaten their ability to form attachment relationships with foster parents and to regulate their behavior and biology. The authors describe the Attachment and Biobehavioral Catch-Up (ABC) intervention, an evidence-based intervention aimed at helping foster children develop trusting relationships with foster parents and develop better biological and behavioral regulation. The authors present research that led to the development of the ABC intervention, outcome research of randomized clinical trials, and a case example of a foster parent and child who participated in the ABC intervention. Finally, issues related to the broader system of care that are likely to affect children's adjustment (e.g., foster caregiver commitment and placement stability) are discussed.
Intervention för närstående till personer med demenssjukdom
Andrén, S.
(2006)
Intervention outcomes among HIV-affected families over 18 months
Rotheram-Borus MJ, Rice E, Comulada WS, Best K, Elia C, Peters K, et al.
(2012)
We evaluate the efficacy of a family-based intervention over time among HIV-affected families. Mothers living with HIV (MLH; n = 339) in Los Angeles and their school-aged children were randomized to either an intervention or control condition and followed for 18 months. MLH and their children in the intervention received 16 cognitive-behavioral, small-group sessions designed to help them maintain physical and mental health, parent while ill, address HIV-related stressors, and reduce HIV-transmission behaviors. At recruitment, MLH reported few problem behaviors related to physical health, mental health, or sexual or drug transmission acts. Compared to MLH in the control condition, intervention MLH were significantly more likely to monitor their own CD4 cell counts and their children were more likely to decrease alcohol and drug use. Most MLH and their children had relatively healthy family relationships. Family-based HIV interventions should be limited to MLH who are experiencing substantial problems.
Intervention outcomes among HIV-affected families over 18 months
Rotheram-Borus, M.J., Rice, E., Scott Comulada, W., Best, K., Elia, C., Peters, K., li, L., Green, S., & Valladares, E.
(2012)
Abstract
We evaluate the efficacy of a family-based intervention over time among HIV-affected families. Mothers living with HIV (MLH; n = 339) in Los Angeles and their school-aged children were randomized to either an intervention or control condition and followed for 18 months. MLH and their children in the intervention received 16 cognitive-behavioral, small-group sessions designed to help them maintain physical and mental health, parent while ill, address HIV-related stressors, and reduce HIV-transmission behaviors. At recruitment, MLH reported few problem behaviors related to physical health, mental health, or sexual or drug transmission acts. Compared to MLH in the control condition, intervention MLH were significantly more likely to monitor their own CD4 cell counts and their children were more likely to decrease alcohol and drug use. Most MLH and their children had relatively healthy family relationships. Family-based HIV interventions should be limited to MLH who are experiencing substantial problems.
Intervention studies for caregivers of stroke survivors: a critical review
Visser-Meily A, van Heugten C, Post M, Schepers V, Lindeman E.
(2005)
The objective of this review was to evaluate the effectiveness of different types of intervention programs for caregivers of stroke patients. A systematic search using Medline, PsychINFO, AMED and CINAHL till March 2003 was carried out and 22 studies were identified. Four types of support programs could be studied: providing specialist services, (psycho)education, counselling and social support by peers. Many different outcome domains and a variety of measures were used. Ten studies reported positive results on one or more outcome domains: reduction of depression (two studies) and burden (one), improvement of knowledge on stroke (five), satisfaction with care (one), family functioning (one), quality of life (three), problem solving skills (two), social activities (two), and social support (one). Three studies reported a negative result on caregiver outcome. We could not identify sufficient evidence to confirm the efficacy of interventions but counselling programs (3 out of 4) appear to have the most positive outcome.
Interventions aiming to improve school achievements of children in out-of-home care: a scoping review
Forsman, H. & Vinnerljung, B.
(2012)
The educational underachievement of children in out-of-home care has been known for decades. In this scoping review, we compiled and analyzed – with a narrative approach – evaluated interventions that aimed to improve foster children's school achievements. Despite a comprehensive searching strategy, only eleven relevant studies were found, indicating that little has been done in intervention research to improve educational outcomes for children in public care. Nine out of the eleven interventions reported some positive results. Literacy was improved in most studies, while evaluated attempts to enhance numeracy skills yielded mixed results. Positive results came from a range of different interventions, e.g. tutoring projects and structured individualized support. We conclude that most focused interventions seem to improve foster children's poor academic achievements, but tutoring projects have so far the best empirical support from evaluations with rigorous designs. Also there's a definite need for more intervention research.
Interventions to reduce the burden of caregiving for an adult with dementia: A Meta-analysis
Acton, G. and J. Kang
(2001)
Interventions with video feedback and attachment discussions: Does type of maternal insecurity make a difference?
BAKERMANS-KRANENBURG, M. J., JUFFER, F. & VAN IJZENDOORN, M. H.
(1998)
Parents' insecure representations of attachment are associated with lower parental sensitivity and insecure infant–parent attachment relationships, leading to less optimal conditions for the children's socio-emotional development. Therefore, two types of short-term intervention were implemented in a group of lower middle-class mothers with an insecure representation of attachment as assessed with the Adult Attachment Interview. In one group of mothers, the intervention efforts were directed at promoting maternal sensitivity by means of written information about sensitive parenting and personal video feedback. In the other group, additional discussions about the mothers' early attachment experiences took place, aiming at affecting the mothers' attachment representation. The interventions were implemented during four home visits between the 7th and the 10th month after the baby's birth. Preliminary results on 30 mothers pointed at an intervention effect: Mothers in both intervention groups were more sensitive at 13 months than mothers in a control group, t(28) = −2.3, effect size d = .87, p = .01. Mothers who were classified as insecure dismissing tended to profit most from video feedback, whereas mothers who were classified as insecure preoccupied tended to profit most from video feedback with additional discussions about their childhood attachment experiences, F(1,16) = 1.9, d = .65, p = .19. © 1998 Michigan Association for Infant Mental Health
Gender and the caring dimension of welfare states: toward inclusive citizenship.
Knijn T, Kremer M.
(1997)
Gender and the social rights of citizenship: state policies and gender relations in comparative perspective.
Orloff, A.
(1993)
Gender differences when parenting children with autism spectrum disorders: A multilevel modeling approach
Jones L, Totsika V, Hastings RP, Petalas MA.
(2013)
Parenting a child with autism may differentially affect mothers and fathers. Existing studies of mother–father differences often ignore the interdependence of data within families. We investigated gender differences within-families using multilevel linear modeling. Mothers and fathers of children with autism (161 couples) reported on their own well-being, and their child's functioning. Mothers reported higher levels of distress compared with fathers, and child behavior problems predicted psychological distress for both mothers and fathers. We found little evidence of child functioning variables affecting mothers and fathers differently. Gender differences in the impact of child autism on parents appear to be robust. More family systems research is required to fully understand these gender differences and the implications for family support. (PsycINFO Database Record (c) 2013 APA, all rights reserved)(journal abstract)
Gender perspective on informal care for elderly people one year after acute stroke
Gosman-Hedström, G. and L. Claesson
(2005)
BACKGROUND AND AIMS: The aim of the one-year follow-up was to evaluate formal care and the situation of informal caregivers from a gender perspective. METHODS: The present study targeted elderly persons (n = 147) living in their own homes 12 months after acute stroke, 94 women and 53 men. The median age of the women was 81 years and the men 80 years. RESULTS: A statistically significant gender difference was seen in living conditions. Eighty percent of the women were living alone compared with 28% of the men (CI 48-56%). The informal care given far exceeded that provided by the community: 65% of these elderly people had some kind of informal care and 44% received formal care from the community. There was a gender difference in daily informal personal care, 24% of men and 16% of women (CI 2-18%), and in daily informal household assistance (CI 15-43%). Formal care was provided by the community significantly more frequently to women (56%) than men (23%) (CI 21-45%). The women more frequently had community-based help with house-cleaning (CI 23-39%) and they also more frequently received help with personal care (CI 1-10%). CONCLUSIONS: This study showed statistically significant gender differences in the use of informal and formal care. Elderly caregivers' situations must be given greater attention, since informal care to stroke survivors represents a far greater burden than the care that is provided by the community. Most of the caregivers were elderly women, and preventive intervention measures should be developed in order to enable them to manage their everyday lives.
Gender perspective on informal care for elderly people one year after acute stroke
Gosman-Hedström, G., & Claesson, L.
(2005)
Gender roles and social policy in an ageing society: The case of Japan
Makita M
(2010)
This article reviews the major underpinnings of the Japanese welfare state in the context of social care from a feminist perspective. In Japan, family-care responsibilities have traditionally been assigned to women; hence, care has long been a women's issue. However, as the social contract of a male breadwinner and a "professional housewife" gradually fades out, Japanese women find more opportunities to renegotiate their caring roles. Of course, this social transformation did not occur in isolation, it was influenced by patterns in economic development, state policies and mainly demographic changes. All this has stimulated new state responses in the form of social welfare expansion that arguably aim to relieve women of the burdens of family-care. The issue remains, however, as to whether Japan would be able to recognise that the main structural issues of population ageing do not originate from demographic changes, but from a strict gendered division of labour and gender inequality.
Introduction to the international classification of functioning, disability and health.
Rauch A, Lückenkemper M, Cieza A.
(2012)
Introduktion till counselling i socialt arbete
Larsson, S. and S. Trygged
(2010)
Counselling. Stödsamtal i social arbete. S. Larsson and S. Trygged
Invandrarskap, äldrevård och omsorg
Torres, S. and F. Magnússon
(2010)
Investera i närstående
Andrén, S.
(2006)
Investera i närstående
Andrén, S.
(2006)
Investera i närstående
Andrén, S
(2006)
IQ, scholastic performance and behaviour in sibs raised in contrasting environments.
Dumaret A
(1985)
Medium- and long-term effects of types of placement of the offspring of lower class families have been studied. The progeny of 28 mothers was reconstituted. The subjects were divided into three groups: 35 children abandoned and adopted early in privileged environments (A), 46 'biological mother-reared' children remaining in their disadvantaged social environments (B) and 21 children raised in institutions or foster homes (C). Analyses focused on IQ, scholastic performance and behaviour. Results show that the social environment has important effects: the differences between the three groups are very significant. For A and B groups tested in the schools, comparisons were made with the classmates. For the C group the effects of long-term emotional deprivation are superimposed on the effects of the social environment.
Is disclosure therapeutic for children following exposure to traumatic violence?
Graham-Bermann, S. A., Kulkarni, M. R., & Kanukollu, S. N.
(2011)
Trauma theory suggests that to recover from exposure to traumatic events, such as exposure to violence, therapeutic interventions should include opportunities to disclose and to process the fearful and stressful events. Yet little is known about the circumstances that foster disclosure of such information in therapeutic environments by children and related mental health outcomes for those children. In this study, the process of disclosure was examined among children ages 6 to 12 years (N = 121) in a community-based intervention program for children exposed to intimate partner violence (IPV). Therapists documented children's spontaneous disclosure in their group. Mothers and children completed demographic and standardized attitudinal and mental health questionnaires. Fifty-two percent of children spontaneously disclosed during therapy. Child ethnicity, harm to the child, internalizing behavioral adjustment problems, and engagement in therapy predicted disclosure. Disclosure within the group was associated with gains for individual children in internalizing behavioral adjustment problems and improvement in attitudes and beliefs concerning the acceptability of violence.
Is It Racism? Skepticism and Resistance Toward Ethnic Minority Care Workers Among Older Care Recipients
Jonson, H.
(2007)
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.
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- verktyget för högre kvalitet och bättre samverkan inom vård och omsorg : Intervjuer med projektledare och experter inför avslutningen av ITHS 2-programmet.
Hjördisdotter von Uexküll, K., Håkansson, P., & Myhrström, K.
(2005)
IT-stöd för vård i hemmiljö : Exempel från Svenska kommuner (Carelink rapport ).
Carelink
(2003)
Jag finns också! : om att vara syskon till en bror eller syster med svår sjukdom eller funktionshinder
Allmänna barnhuset
(2009)
Gender, Social Care and Welfare State Restructuring in Europe
Lewis, J, (eds).
(1998)
Gender, work, and attitudes
Kotsadam, A.
(2011)
The thesis consists of four self-contained papers. Paper 3: Does informal eldercare impede women's employment? The case of European welfare states (Forthcoming in Feminist Economics) European states vary in eldercare policies and in gendered norms of family care, and this study uses these variations to gain insight into the importance of macro-level factors for the work–care relationship. Using advanced panel data methods on European Community Household Panel (ECHP) data, this study finds women's employment to be negatively associated with informal caregiving to the elderly across the European Union. The effects of informal caregiving seem to be more negative in the Southern European countries, less negative in the Nordic countries, and in between these extremes in the Central European countries included in the study. This study explains that since eldercare is a choice in countries with more formal care and less pronounced gendered care norms, the weaker impact of eldercare on women's employment in these countries has to do with the degree of degree of coercion in the caring decision. Paper 4: The employment costs of caregiving in Norway Informal eldercare is an important pillar of modern welfare states and the ongoing demographic transition increases the demand for it while social trends reduce the supply. Substantial opportunity costs of informal eldercare in terms of forgone labor opportunities have been identified, yet the effects seem to differ substantially across states and there is a controversy on the effects in the Nordic welfare states. In this study, the effects of informal care on the probability of being employed, the number of hours worked, and wages in Norway are analyzed using data from the Life cOurse, Generation, and Gender (LOGG) survey. New and previously suggested instrumental variables are used to control for the potential endogeneity existing between informal care and employment-related outcomes. In total, being an informal caregiver in Norway is found to entail substantially less costs in terms of forgone formal employment opportunities than in non-Nordic welfare states.
Gender, work, and attitudes
Kotsadam, A.
(2011)
Abstract The thesis consists of four self-contained papers. Paper 1: The long term effect of own and spousal parental leave on mothers' earnings We take advantage of the introduction of a Norwegian parental leave reform in 1993 to identify the causal effect of parental leave on mothers' long-term earnings. The reform raised the total leave period by seven weeks, but reserved four weeks for the father. The reform process was fast, so all mothers were already pregnant at the time of the policy announcement. Applying a regression discontinuity design we find that women who had their last child immediately after the policy change had higher mean yearly earnings from 1995 to 2005 and long-run yearly earnings (in our last year of data in 2005) compared to women who had their last child immediately before the reform. However, the estimate is sensitive to extreme observations, to restrictions regarding eligibility, and to the exclusion of observations within a window of three days before and after the reform. Paper 2: Do laws affect attitudes? An assessment of the Norwegian prostitution law using longitudinal data (Forthcoming in International Review of Law and Economics) The question of whether laws affect attitudes has inspired scholars across many disciplines, but empirical knowledge is sparse. Using longitudinal survey data from Norway and Sweden, collected before and after the implementation of a Norwegian law criminalizing the purchase of sexual services, we assess the short-run effects on attitudes using a difference-indifferences approach. In the general population, the law did not affect moral attitudes toward prostitution. However, in the Norwegian capital, where prostitution was more visible before the reform, the law made people more negative toward buying sex. This supports the claim that proximity and visibility are important factors for the internalization of legal norms. Paper 3: Does informal eldercare impede women's employment? The case of European welfare states (Forthcoming in Feminist Economics) European states vary in eldercare policies and in gendered norms of family care, and this study uses these variations to gain insight into the importance of macro-level factors for the work–care relationship. Using advanced panel data methods on European Community Household Panel (ECHP) data, this study finds women's employment to be negatively associated with informal caregiving to the elderly across the European Union. The effects of informal caregiving seem to be more negative in the Southern European countries, less negative in the Nordic countries, and in between these extremes in the Central European countries included in the study. This study explains that since eldercare is a choice in countries with more formal care and less pronounced gendered care norms, the weaker impact of eldercare on women's employment in these countries has to do with the degree of degree of coercion in the caring decision. Paper 4: The employment costs of caregiving in Norway Informal eldercare is an important pillar of modern welfare states and the ongoing demographic transition increases the demand for it while social trends reduce the supply. Substantial opportunity costs of informal eldercare in terms of forgone labor opportunities have been identified, yet the effects seem to differ substantially across states and there is a controversy on the effects in the Nordic welfare states. In this study, the effects of informal care on the probability of being employed, the number of hours worked, and wages in Norway are analyzed using data from the Life cOurse, Generation, and Gender (LOGG) survey. New and previously suggested instrumental variables are used to control for the potential endogeneity existing between informal care and employment-related outcomes. In total, being an informal caregiver in Norway is found to entail substantially less costs in terms of forgone formal employment opportunities than in non-Nordic welfare states