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‘The balance in our relationship has changed’: everyday family living, couplehood and digital spaces in informal spousal care.

Andréasson Frida, Mattsson, Tina, Hanson, Elizabeth (2021)

ABSTRACT
Building on an ethnographic approach, this study aims to explore how the notion of couplehood and family life is understood and negotiated in everyday life by older carers and their spouses. Inspired by Morgan's perspective on the doing of family life, and Hochschild's analysis of emotion work and feeling rules, the article shows how the process of becoming a carer/care recipient creates a new life situation for couples. The findings show that gendered tasks of family life such as housework and financial responsibilities change between spouses, and new practicalities emerge. This in turn changes the power balance between the spouses and how they do couplehood. The findings also reveal how the participants' sense of we and I are negotiated to do family life, with regards to their health, sense of moral obligation, personal autonomy, love and caregiving. A sense of social isolation is apparent, and social media, apps and online games are sometimes used to create digital spaces in which participants can maintain connections with friends and children, find solitude and regain energy by getting a temporary pause from spousal informal care. Such strategies enable couples to find balance and a sense of autonomy in their lives as a family.

A comparison of spouse and non-spouse carers of people with dementia: a descriptive analysis of Swedish national survey data

Marcus F. Johansson, Kevin J. McKee, Lena Dahlberg, Christine L. Williams, Martina Summer Meranius, Elizabeth Hanson, Lennart Magnusson, Björn Ekman, Lena Marmstål Hammar (2021)

Abstract
Background
Being an informal carer of a person with dementia (PwD) can have a negative effect on the carer's health and quality of life, and spouse carers have been found to be especially vulnerable. Yet relatively little is known about the care provided and support received by spouse carers. This study compares spouse carers to other informal carers of PwDs regarding their care provision, the support received and the psychosocial impact of care.

Methods
The study was a cross-sectional questionnaire-based survey of a stratified random sample of the Swedish population aged 18 or over. The questionnaire explored how much care the respondent provided, the support received, and the psychosocial impact of providing care. Of 30,009 people sampled, 11,168 (37.7 %) responded, of whom 330 (2.95 %) were informal carers of a PwD.

Results
In comparison to non-spouse carers, spouse carers provided more care more frequently, did so with less support from family or the local authority, while more frequently experiencing negative impacts on their social life and psychological and physical health. Spouse carers also received more carer support and more frequently experienced a closeness in their relationship with the care-recipient.

Conclusions
Spouse carers of PwD differed from non-spouse carers on virtually all aspects of their care situation. Policy and practice must be more sensitive to how the carer-care-recipient relationship shapes the experience of care, so that support is based on an understanding of the individual carer's actual needs and preferences rather than on preconceptions drawn from a generalised support model.

A Divided Old Age through Research on Digital Technologies

Poli, Arianna (2021)

Doktorsavhandling

This thesis aims at contributing to the understanding of digital inequalities among older people, by studying the involvement of older people in research on digital technologies. Some mechanisms driving old age digital inequalities are well known. For instance, people with lower social positions tend to have lower digital skills, to face technology accessibility and affordability issues, and, thus, to engage less with digital technologies compared to their counterparts. However, less attention has been paid to issues related to research and development of digital technologies, such as the involvement of older people in research evaluating new digital technologies. Previous studies indicate that participants and non-participants in research are different one another, with the former being younger, reporting higher educational levels, having better health status than the non-participants. This may bias research outcomes and lead to incorrect conclusions on the utility of digital technologies. The objective of this thesis is to investigate the link between the involvement of older people in digital technology evaluations and the research outcomes. Healthcare is used as exemplifying context in which digital technologies are used. In Study I, participation in digital health research is conceptualised, and a research tool for identifying and measuring selective participation is developed. In Study II and III, factors associated with participation in two digital health intervention studies are analysed. In Study IV, the impact of selective participation on the research outcomes of a digital health study is identified, measured, and corrected. Thesis findings show that participation of older people in digital health research is selective by age, gender, health status, job level, and digital skills, and can indicate a mechanism for digital inequalities. Selective participation biases research outcomes by overemphasising the intervention effects of the over-represented groups over those among the under-represented groups. It can cause an overestimation of the positive effects of digital health technologies due to the under-representation of those groups who do not benefit from the intervention. This promotes digital technologies which increase exclusion risks for some groups of older people and reinforce old age digital and social inequalities. Weighting procedures can be used for mitigating the impact of this mechanism on the research outcomes of intervention studies on digital technologies.

Att ha en förälder som dömts till fängelse försämrar barnens livschanser

Will Dobbie, Hans Grönqvist, Susan Niknami, Mårten Palme, Mikael Priks (2019)

Barn vars förälder dömts till fängelse klarar sig sämre i skolan och har en ökad risk för egen kriminalitet i tonåren. Som unga vuxna har de svårare att etablera sig på arbetsmarknaden, visar en ny IFAU-rapport.

Rapporten är en sammanfattning av IFAU Working paper 2019:24

Barn som närstående i Sörmland behöver stärkt stöd Resultat från Liv & Hälsa ung undersökningen 2020

Region Sörmland (2021)

Syftet med denna kartläggning är att beskriva hur många barn som är närstående till någon som
har allvarlig fysisk/psykisk sjukdom/funktionsnedsättning, missbruk eller plötsligt avlidit. Vi
beskriver också hur barn som närstående har det inom områden som rör skola, hälsa, riskbeteenden ANT (alkohol, narkotika och tobak), socialt stöd samt trivsel och framtidstro. Målet med
rapporten är att uppmärksamma livsvillkoren hos barn som närstående i Sörmland.

Benefits and barriers of technologies supporting working carers - A scoping review

Alice Spann, Joana Vicente, Sarah Abdi, Mark Hawley, Marieke Spreeuwenberg, Luc de Witte (2021)

Abstract
Combining work and care can be very challenging. If not adequately supported, carers' employment, well- being and relationships may be at risk. Technologies can be potential solutions. We carried out a scoping review to find out what is already known about technologies used by working carers. The search included academic and grey literature published between January 2000 and June 2020. Sixteen relevant publications were analysed and discussed in the context of the broader discourse on work-care reconciliation. Technologies discussed can be classified as: (a) web- based technologies; (b) technologies for direct communication; (c) monitoring technologies; and (d) task-sharing tools. Technologies can help to make work-care reconciliation more manageable and alleviate psychosocial and emotional stress. General barriers to using technology include limited digital skills, depending on others to use technol-ogies, privacy and data protection, cost, limited technological capabilities, and limited awareness regarding available technologies. Barriers specific to some technologies include work disruptions, limited perceived usefulness, and lacking time and energy to use technologies. More research into technologies that can address the needs of working carers and how they are able to use them at work is needed.

Bereaved Family Members' Satisfaction with Care during the Last Three Months of Life for People with Advanced Illness.

O'Sullivan, Anna, Alvariza, Anette, Öhlen, Joakim, Håkanson, Cecilia (2018)

BACKGROUND: Studies evaluating the end-of-life care for longer periods of illness trajectories and in several care places are currently lacking. This study explored bereaved family members' satisfaction with care during the last three months of life for people with advanced illness, and associations between satisfaction with care and characteristics of the deceased individuals and their family members.

METHODS: A cross-sectional survey design was used. The sample was 485 family members of individuals who died at four different hospitals in Sweden.

RESULTS: Of the participants, 78.7% rated the overall care as high. For hospice care, 87.1% reported being satisfied, 87% with the hospital care, 72.3% with district/county nurses, 65.4% with nursing homes, 62.1% with specialized home care, and 59.6% with general practitioners (GPs). Family members of deceased persons with cancer were more likely to have a higher satisfaction with the care. A lower satisfaction was more likely if the deceased person had a higher educational attainment and a length of illness before death of one year or longer.

CONCLUSION: The type of care, diagnoses, length of illness, educational attainment, and the relationship between the deceased person and the family member influences the satisfaction with care.

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.

Glöm allt men inte mig

Grandin Philomène (2021)

Det är 80-tal och Philomène och hennes pappa lever ett okonventionellt liv fyllt av kultur och kärlek. Men pengarna är oftast slut. Pappa är Izzy Young, legendaren som upptäckte Bob Dylan och vars Folklore Center i New York utgjorde scen för musiker och poeter som Patti Smith och Allen Ginsberg.

Trettio år senare sjunker Izzy allt djupare in i demens.

En gripande uppväxtskildring och en berättelse om en far och dotter som vägrar släppa taget om livet och varandra.

Internet-Based Cognitive Behavioral Therapy for Informal Caregivers: Randomized Controlled Pilot Trial

Biliunaite Ieva, Kazlauskas Evaldas, Sanderman Robbert, Truskauskaite-Kuneviciene Inga (2021)

Abstract [en]
Background: Caregiving for a family member can result in reduced well-being for the caregiver. Internet-delivered cognitive behavioral therapy (ICBT) may be one way to support this population. This is especially the case for caregivers in countries with limited resources, but high demand for psychological services.

Objective: In this study we evaluated the effects of a therapist-guided 8-week-long ICBT intervention for informal caregivers.

Methods: In total, 63 participants were recruited online and randomized either to the intervention or to the wait-list control group. The main study outcome was the Caregiver Burden Inventory (CBI). Secondary outcomes included measures of caregiver depression, anxiety, stress, and quality of life.

Results: Moderate between-group effect sizes were observed for the CBI measure, in favor of the intervention group, with a Cohen d=–0.70 for the intention-to-treat analysis. Analyses of the subscales of the CBI showed significant reductions on the subscales of Development and Physical Health. Moderate reductions were found for depression and anxiety scores as indicated by the Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7) scores. Large between-group effects were observed for reduction in stress and increase in quality of life as indicated by the Perceived Stress Scale-14 (PSS-14), The Brunnsviken Brief Quality of Life Scale (BBQ), and The World Health Organization-Five Well-Being Index (WHO-5). In addition, participants experienced little to no difficulty in using the program and were mostly satisfied with the intervention's platform and the choice of content.

Conclusions: This is the first internet intervention study for informal caregivers in Lithuania. The results suggest that therapist-guided ICBT can be effective in reducing caregiver burden, anxiety, depression, stress, and improving quality of life.

Italian Adolescent Young Caregivers of Grandparents: Difficulties Experienced and Support Needed in Intergenerational Caregiving—Qualitative Findings from a European Union Funded Project

D’Amen Barbara, Socci Marco, Di Rosa Mirko, Casu Giulia, Boccaletti Licia, Hanson, Elizabeth, Santini Sara (2022)

Abstract [en]
The article aims to describe the experiences of 87 Italian adolescent young caregivers (AYCs) of grandparents (GrPs), with reference to the caregiving stress appraisal model (CSA) that provides a theoretical lens to explore the difficulties encountered and support needed in their caring role. Qualitative data were drawn from an online survey conducted within an EU Horizon 2020 funded project. An inductive thematic analysis was carried out, and the findings were critically interpreted within the conceptual framework of the CSA model. The analysis highlighted three categories of difficulties: material, communication and emotional/psychological. The most common material difficulty was the physical strain associated with moving "uncooperative" disabled older adults. The types of support needed concerned both emotional and material support. The study provides a deeper understanding of the under-studied experiences of AYCs of GrPs. Based on these findings, policies and support measures targeted at AYCs of GrPs should include early needs detection, emotional support and training on intergenerational caring in order to mitigate the stress drivers. Moreover, the study advances the conceptualisation of the CSA model by considering the above-mentioned aspects related to intergenerational caregiving

Planera framtiden – redan idag. Ett inspirationsmaterial kring frågor som rör framtiden för personer med flerfunktionsnedsättning och deras anhöriga

Anna Pella (2021)

Skriften Planera framtiden – redan idag är ett inspirationsmaterial kring frågor som rör framtiden för personer med flerfunktionsnedsättning och deras anhöriga. I skriften finns berättelser från familjer, yrkesverksamma och specialister.

Skriften kan vara ett stöd för personer som lever nära någon med flerfunktionsnedsättning. Den kan också användas som underlag för diskussion i olika verksamheter och utbildningar.

På tal om ålder - Psykiskt välbefinnande – oavsett generation

MIND (2021)

Sammanfattning:
Psykisk ohälsa ses ofta som en naturlig del av åldrandet – något
att acceptera snarare än att förebygga eller behandla. Psykisk
ohälsa i hög ålder kan dock ofta vara konsekvenser av sociala
förändringar och försämrad hälsa och funktionsförmåga. Denna
rapport syftar till att ge en översikt av forskningsläget gällande
psykisk ohälsa bland äldre personer; dess förekomst, grupper
som har ökad risk för psykisk ohälsa samt förebyggande och
behandlande arbete. I den här rapporten fokuserar vi på åldersgrupper över 65 år – en grupp med stor variation i hälsa och
levnadsförhållanden.

Relatives' Experiences of Mental Health Care, Family Burden and Family Stigma: Does Participation in Patient-Appointed Resource Group Assertive Community Treatment (RACT) Make a Difference?

Nils Sjöström, Margda Waern, Anita Johansson, Bente Weimand, Ola Johansson, Mats Ewertzon (2021)

Abstract
The aim of this exploratory cross-sectional study was to investigate the experiences of relatives of individuals with severe mental illness with and without participation in patient-appointed Resource Group Assertive Community Treatment (RACT). A total of 139 relatives (79 with and 60 without RACT) completed the Family Involvement and Alienation Questionnaire, the Burden Inventory for Relatives of Persons with Psychotic Disturbances, and the family version of the Inventory of Stigmatizing Experiences. We found that relatives participating in RACT experienced a more positive approach from the healthcare professionals, as well as a lower degree of alienation from the provision of care. Relatives who did not participate in RACT were more afraid that their ill next of kin would hurt someone. No other differences in family burden were found. Experiences of family stigmatization were similar in both groups. In conclusion, participating in patient-appointed RACT may contribute to a higher level of satisfaction for relatives in their encounter with healthcare professionals and a more positive alliance. Implementation of RACT in new settings would require adaptation to local conditions to facilitate cooperation between healthcare staff and other relevant services. Staff training focuses on the case manager function and needs assessment, as well as how to create an alliance with the patient and his/her relatives.

The Family Model Slutrapport från en genomförbarhetsstudie med medarbetare inom barn- och ungdomspsykiatri, specialiserad vuxenpsykiatri och primärvård i Region Skåne, Region Halland och Region Västra Götaland

Gisela Priebe, Ann-Louise Danlarén, Maria Afzelius (2021)

Sammanfattning
The Family Model är ett familjeorienterat verktyg där kliniker med hjälp av en visuell modell tillsammans med familjen kartlägger hur psykisk ohälsa påverkar och påverkas av relationerna i familjen och omständigheterna omkring den. Modellen har utvecklats av Adrian Falkov, barn- och ungdomspsykiater i Australien. Syftet med studien är att undersöka om modellen kan vara användbar i Sverige. Studien består av två delar. I den första delen fick medarbetare i barn- och ungdomspsykiatri, specialiserad vuxenpsykiatri och primärvård sätta sig in i modellen genom att bland annat gå en webbkurs, eventuellt prova modellen i praktiken (frivilligt) och sedan delge sin uppfattning i en enkät. Sammanfattningsvis finner man modellen användbar, både i verksamheter som vill utveckla ett tydligare familjeperspektiv i sitt arbete och som komplement till andra interventioner, som många av deltagarna är förtrogna med. Några menar att de redan har välfungerande metoder som är bättre anpassade till deras arbete med t.ex. späd- och småbarn och deras föräldrar. Det finns också en önskan att den engelska webbkursen och den visuella modellen skall översättas och anpassas till svenska. I den andra delen av studien gick vi igenom ett antal styrdokument för vård av barn och vuxna med psykisk ohälsa för att se vilken vägledning dessa ger för arbetet med familjer med psykisk ohälsa. Många styrdokument tar upp arbete med familj och närstående till patienten, men detta sker oftare ur ett individorienterat än ur ett familjeorienterat perspektiv. Implementering och utvärdering av familjeorienterade interventioner vid psykisk ohälsa framstår som en fortsatt angelägen uppgift.

The influence of care place and diagnosis on care communication at the end of life: bereaved family members' perspective

O'Sullivan Anna, Alvariza Anette, Öhlén Joakim, Larsdotter Cecilia (2021)

OBJECTIVE: To investigate the influence of care place and diagnosis on care communication during the last 3 months of life for people with advanced illness, from the bereaved family members' perspective.

METHOD: A retrospective survey design using the VOICES(SF) questionnaire with a sample of 485 bereaved family members (aged: 20-90 years old, 70% women) of people who died in hospital was employed to meet the study aim.

RESULTS: Of the deceased people, 79.2% had at some point received care at home, provided by general practitioners (GPs) (52%), district nurses (36.7%), or specialized palliative home care (17.9%), 27.4% were cared for in a nursing home and 15.7% in a specialized palliative care unit. The likelihood of bereaved family members reporting that the deceased person was treated with dignity and respect by the staff was lowest in nursing homes (OR: 0.21) and for GPs (OR: 0.37). A cancer diagnosis (OR: 2.36) or if cared for at home (OR: 2.17) increased the likelihood of bereaved family members reporting that the deceased person had been involved in decision making regarding care and less likely if cared for in a specialized palliative care unit (OR: 0.41). The likelihood of reports of unwanted decisions about the care was higher if cared for in a nursing home (OR: 1.85) or if the deceased person had a higher education (OR: 2.40).

SIGNIFICANCE OF RESULTS: This study confirms previous research about potential inequalities in care at the end of life. The place of care and diagnosis influenced the bereaved family members' reports on whether the deceased person was treated with respect and dignity and how involved the deceased person was in decision making regarding care.

Think Family, Work Family! Families living with mental illness. Perspectives of everyday life, family-centered support, and quality of community mental healthcare"

Aass, Lisbeth Kjelsrud (2021)

Think Family, Work Family! Families living with mental illness. Perspectives of everyday life, family-centered support, and quality of community mental healthcare.
Aims: The overall aim of this thesis was to illuminate perceptions of everyday life, family support from mental healthcare professionals, and quality of community mental healthcare from the perspectives of families living with mental illness. A further aim was to elucidate families' and mental healthcare professionals' experiences of Family Centered Support Conversations (FSCS) in community mental healthcare.
Methods: A descriptive design with qualitative and quantitative methods was used. Qualitative data were collected by means of family interviews with seven families living with a young adult suffering from mental illness (n= 17 participants) (I, III) and individual interviews with mental healthcare professionals (n= 13) (IV). The data were analyzed using phenomenography (I, III, IV). Quantitative data were collected from adult patients (n= 43) suffering from mental illness and family members (n=43) (II) in community mental healthcare using the Family Perceived Support Questionnaire (ICE-FPSQ), the Quality in Psychiatric Care – Community Out -Patient (QPC-COP) and Out-Patient Next of Kin (QPCCOPNK). The data were analyzed using non- parametric statistics (II).
Main findings: Families balanced between letting go and enabling the young adult to become independent while remaining close to help him/her complete education, work and have a social life (I). The young adults tried not to be a burden, but still longed for family members to understand them (I). Family members intervened as best they could (I), but felt there was a lack of support and respect and no invitation to take part in the mental healthcare
(II). Family members reported significantly lower quality of community mental healthcare than patients (II). Healthcare professionals held back information although young adult patients had consented to give family members insight (I). Athough the FCSC was experienced as new and uncomfortable, the families also regarded it as beneficial and safe
(III). It facilitated an opportunity to share and reflect on the family's beliefs, and enabled them to find new beliefs and opportunities in everyday life (III). The FCSC helped healthcare professionals to structure the involvement of family members as a complement to care as usual, although there was still a need to adjust the intervention (IV).
Conclusions: Young adults suffering from mental illness are reliant on support from family to manage everyday life. Mental healthcare professionals play an important role in facilitating a safe environment for sharing beliefs and bringing strengths and resources to the front seat in family-centered support conversations. When family are included as part of the mental healthcare team, this enhances their ability to be supportive.

Utvärdering av familjehelger – ett stöd till utlandsveteranfamiljer Invidzonen – Försvarsmakten

Eva Sennemark, Linnéa Aldman, Elizabeth Hanson (2021)

Försvarsmakten finansierar sedan 2018 familjehelger för utlandsveteraner och deras familjer som en del av personal- och anhörigarbetet. Familjehelgerna genomförs av anhörignätverket Invidzonen i syfte att stötta och informera föräldrar där den ena föräldern har varit, är utsänd eller kommer att sändas ut på ett internationellt uppdrag.

Nationellt kompetenscentrum anhöriga (Nka) har på uppdrag av Försvarsmakten genomfört en utvärdering av familjehelgerna, vilket redovisas i denna rapport. Fokus för utvärderingen har varit måluppfyllelse och förväntade effekter för deltagande familjer.

What motivates informal carers to be actively involved in research, and what obstacles to involvement do they perceive?

Camilla Malm, Stefan Andersson, Maya Kylén, Susanne Iwarsson, Elizabeth Hanson, Steven M. Schmidt (2021)

Abstract
Background: Due to demographic changes and a strained public sector operating in many countries globally, informal care is increasing. Currently, at least 1.3 million adults in Sweden regularly provide help, support and/or care to a family member/signifcant other. With no sign of an imminent decrease in their caring activities, it is important that informal carers are considered as a key stakeholder group within research that afects them, e.g., the co-design of carer and/or dyadic support interventions. The objective of this descriptive, quantitative study was to investigate informal carers' perceived motivations and obstacles to become involved in research. Methods: A cross-sectional survey design was adopted, using frst-wave data from a panel study. The data, collected in Sweden between September 2019 and March 2020, included survey responses from 147 informal carers who were
either aged 60+ years themselves or were caring for someone who was aged 60+ years.
Results: Our main results showed that informal carers are, in general, interested in research. Slightly fewer were interested in becoming actively involved themselves, but older age was the only characteristic signifcantly associated with less interest of being actively involved. Two latent motivational dimensions emerged from the factor analysis: 'family motivation' and 'the greater good motivation'. These, according to our results, almost equally valued dimensions, described the difering reasons for informal carers to become involved in research. The most common perceived obstacle was lack of time and it was reported by more women than men. Conclusion: Our study contributes with new knowledge of informal carers' perceived motivations and obstacles regarding carer involvement in research. Paying attention to the difering motivational dimensions held by informal carers could help researchers create conditions for more inclusive and systematic participation of informal carers within research. Thereby, increasing the opportunities for research that is deemed to be of higher societal impact.

A meta-analysis of parent training: Moderators and follow-up effects

Lundahl, B., Risser, H. J., & Lovejoy, C. M. (2006)

A meta-analysis of 63 peer-reviewed studies evaluated the ability of parent training programs to modify disruptive child behaviors and parental behavior and perceptions. This analysis extends previous work by directly comparing behavioral and nonbehavioral programs, evaluating follow-up effects, isolating dependent variables expressly targeted by parent training, and examining moderators. Effects immediately following treatment for behavioral and nonbehavioral programs were small to moderate. For nonbehavioral programs, insufficient studies precluded examining follow-up effects. For behavioral programs, follow-up effects were small in magnitude. Parent training was least effective for economically disadvantaged families; importantly, such families benefited significantly more from individually delivered parent training compared to group delivery. Including children in their own therapy, separate from parent training, did not enhance outcomes.

A Randomized Controlled Effectiveness Trial of Parent Management Training With Varying Degrees of Therapist Support

Kling, Å., Forster, M., Sundell, K., & Melin, L. (2010)

This study examined the effectiveness of a Swedish parent management training (PMT) intervention for parents of children aged 3 to 10 within the context of regular social service. Self-referred parents of 159 children (aged 3 to 10) with conduct problems were randomly assigned to either 11 practitioner-assisted group sessions (PMT-P), or a single instructional workshop followed by self-administration of the training material (PMT-S), or a waitlist control group. Intent-to-treat analyses showed that both PMT-P and PMT-S improved parent competence and reduced child conduct problems compared to the waitlist at posttest. Both training conditions showed further significant improvements at the 6-month follow-up. In direct comparison, PMT-P was superior to PMT-S on measures of child conduct problems at both posttest and follow-up. Improvement in child conduct was mediated by improvement in parent competencies and homework fidelity. The findings in this study have implications for large-scale dissemination of parent management training through different means of delivery.

A register study of life events in young adults born to mothers with mild intellectual disability

Lindblad I, Billstedt E, Gillberg C, Fernell E (2014)

BACKGROUND: Young adults, born to population-representative mothers with
intellectual disability (ID), were targeted for psychosocial/life event
follow-up.
METHODS: The whole group originally comprised 42 individuals but 3 had died and 1
had moved abroad. The remaining 38 were approached and 10 consented to
participate in an interview study. However, of the remaining 28, it was not
possible to establish contact with 21 who were instead searched for in various
official registers.
RESULTS: Most (n = 18) individuals in the study group had been in contact with
different authorities and clinics. Of the 21 individuals, 10 had contact with
social services since childhood and 4 of these had been taken into care (foster
family) and 6 had had contact families during childhood. One individual had been
taken into a treatment centre and one grew up mainly with the father. Altogether
12 (57%) of 21 individuals did not grow up full-time with their biological
mother. Twelve (57%) had major neurodevelopmental/neuropsychiatric conditions,
including five with ID and seven with attention-deficit hyperactivity disorder
(ADHD). Four individuals were registered within the Prison and Probation Service
due to various types of crimes.
CONCLUSION: Individuals born to mothers with ID in our study group were at high
risk of adverse experiences and negative outcomes, such as increased childhood
mortality, a relatively large proportion of children taken into care, high rates
of ID and ADHD in the children and of criminality in young adulthood. Taken
together with the results obtained in an in-depth interview study of those in the
originally targeted sample with whom it was possible to obtain contact, the
present findings suggest that it will be important to provide early support and
longitudinal developmental follow-up in groups of children growing up with a
mother with ID. Children in this situation appear to be at a number of risks,
probably related both to hereditary factors and to social disadvantage.

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.

A treatment outcome study of bereavement groups for children

Tonkins, S.A. & Lambert, M.J. (1996)

ABSTRACT An empirical study of the effectiveness of an eight-week children's bereavement psychotherapy group was undertaken. Children, aged 7–11, who had a parent and/or sibling die were initially assigned to either a treatment group or a waiting list control group and followed over an eight-week period. Participation in the experimental group was associated with a significant decrease in symptomatology, as assessed by multiple measures using multiple sources. Despite a small sample, the intervention was sufficiently powerful to suggest the use of short-term group therapy to help children cope with the death of a parent and/or sibling.

A treatment outcome study of bereavement groups for children - ResearchGate. Available from: http://www.researchgate.net/publication/226810839_A_treatment_outcome_study_of_bereavement_groups_for_children [accessed Jun 23, 2015].

A Unified Theory of Development: A Dialectic Integration of Nature and Nurture

Sameroff, A. (2010)

The understanding of nature and nurture within developmental science has evolved with alternating ascendance of one or the other as primary explanations for individual differences in life course trajectories of success or failure. A dialectical perspective emphasizing the interconnectedness of individual and context is suggested to interpret the evolution of developmental science in similar terms to those necessary to explain the development of individual children. A unified theory of development is proposed to integrate personal change, context, regulation, and representational models of development.

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.

ADHD ur ett socioekonomiskt perspektiv

Nilsson I, Nilsson-Lundmark E. (2013)

Vi har i ett antal studier analyserat ADHD-problematiken ur ett socioekonomiskt perspektiv med hjälp av kalkylmodeller vi utvecklat under cirka 30 års tid. Tidiga insatser kring barn med ADHD ger – vid sidan av de mänskliga vinsterna - utomordentligt höga samhällsvinster. Flera miljoner kronor per barn för perioden upp till 20 års ålder. Än tydligare blir det då man följer vuxna, i det här fallet med kriminell belastning. Samhällskostnaderna för uteblivna insatser för en grupp om 30 intagna kan under en 20 års period uppgå till mer än 800 Mkr. En insats mot denna målgrupp, av det slag som gjorts vid projektet vi följt på
Norrtäljeanstalten ger på 20 års sikt sannolikt en finansiell avkastning på mer än 250 Mkr eller 80 gånger insatsen. Tidiga, samordnade och evidensbaserade insatser för denna målgrupp är en social investering med utomordentligt hög lönsamhet. Ur ett strukturellt perspektiv kan frånvaron av kloka insatser enklast beskrivas som bristen på helhetssyn och långsiktighet då beslut tas kring denna målgrupp. Priset för detta är högt, mänskligt och ekonomiskt.

Adolescents’ perceptions of social support after the death of a parent

Gray, R. (1989)

Fifty individuals who had lost a parent through death during adolescence were interviewed. All deaths had occurred within five years and not less than six months before the study was initiated. Half the participants had been members of a peer-support group in their secondary school. When asked to describe the types of help received during their bereavement and to rate the usefulness of such help, most participants reported that a peer (40 percent) or the surviving parent 28 percent had been "most helpful," primarily through emotionally supportive behavior. The results indicated that the source of support had often influenced the style of support and among adolescents who had participated in a peer-support the participants' perceptions of its value. The perceptions of support had not.

Bibliotherapy: using books to help bereaved children

Berns, C.F. (2003)

This article explores bibliotherapy as a process in which death-related literature is used to help bereaved children cope with experiences of death and loss. For that exploration, this article defines bibliotherapy, offers an argument in support of its value, and suggests how a potential bibliotherapist might begin. Suggestions are made for selecting and using stories in bibliotherapy. Since most bibliotherapy is actually used as an optional tool in bereavement support groups, guidelines are offered as to how it might best be implemented in that context. Much of this discussion is also relevant to the use of bibliotherapy on a one-to-one basis involving a particular child and an adult guide. Examples of stories and books for children that I have used in bibliotherapy are mentioned throughout this article.

Family environmental and genetic influences on children’s future chemical dependency.

Kumpfer KL, De Marsh JP. (1985)

This article reviews possible genetic and environmental factors which contribute to future chemical dependency in children of aicohol and drug abusing parents. Studies on genetic vulnerability and biological markers of alcoholism and drug abuse are reviewed. Recent studies by the authors on characteristics of families with chemically dependent parents and the affective, cognitive, and behavioral impacts on the children are discussed. The conclusion includes recommendations concerning the need for more family-focused prevention interventions for children of chemically dependent parents.

Family Support and Empowerment: Post Autism Diagnosis Support Group for Parents.

Banach M, Iudice J, Conway L, Couse LJ (2010)

Receiving a diagnosis of an autism spectrum disorder often elicits strong emotional reactions from parents of the diagnosed child. Follow-up services and continued support for these families is a necessary component to help families adapt and meet their and their children's needs. This pilot study measured the effects of a six-session, co-facilitated, support group on the advocacy skills and self-efficacy of parents coping with a child's diagnosis. Statistically significant increases in the average mean scores for the three subscales of the Family Empowerment Scale were found. Implications for practice and research are discussed.

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.

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.

Från psykiskt sjuk till psykiskt funktionshindrad

Hydén, Lars-Christer (red) (2005)

Från psykiskt sjuk till psykiskt funktionshindrad belyser de förändrin gar som ägt rum inom den svenska psykiatrin sedan början av 1990-talet , med speciell tyngdpunkt på psykiatrireformen 1994 och dess konsekven ser. Denna reform har bland annat lett till att den kommunala socialtj änsten fått ett allt större ansvar för omsorgen om personer med långva riga och svåra psykiska funktionshinder. Teman som lyfts fram är försk jutningen från begreppet ?psykisk sjukdom? till ?psykiskt funktionshin der?, vår kunskap kring psykiska funktionshinder och hur drabbade pers oner hanterar dessa i sin vardag. Vidare diskuteras de nya roller som anhöriga och frivilligorganisationer fått efter avvecklingen av de gam la mentalsjukhusen; de krav på delaktighet och inflytande över det egn a livet som psykiskt funktionshindrade ställer, något som också föränd rar villkoren för dem som arbetar med dessa frågor. Boken vänder sig s peciellt till personer som utbildar sig inom vård och omsorg

Föräldraskap och missbruk: att ta upp frågor om föräldraskap i missbruks- och beroendevården

Socialstyrelsen (2012)

Genom svaren på de frågor som ställs om familjen är utredare och behandlare i missbruks- och beroendevården ibland de enda som känner till att barnen lever i en familj med missbruk. De behöver uppmärksamma barns och ungas situation, så att deras rättigheter, behov av information, råd och stöd tillgodoses.

Syftet med skriften är att underlätta för personal inom missbruks- och beroendevården att ta upp föräldraskap och samtala med föräldern om barns situation i utredning eller behandling. Den förespråkar ingen särskild modell eller metod i arbetet, utan tar upp förhållningssätt och innehåll i samtal om föräldraskap. Den tar även upp samarbetet med socialtjänstens barn- och ungdomsvård. Skriften riktar sig till utredare och behandlare inom socialtjänsten, hälso- och sjukvården samt övrig missbruks- och beroendevård, och kan också vara av intresse för socialtjänstens barn- och ungdomsvård. Den utgår ifrån situationen vid alkoholmissbruk eller -beroende, men kan i väsentliga delar också vara relevant vid föräldrars missbruk av narkotika eller läkemedel.

Senast uppdaterad 2021-01-25 av Peter Eriksson, ansvarig utgivare Lennart Magnusson