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Early years of support group 1: Three therapists´ views

Bergman, A., Moskowitz, S. & Demetri Friedman, D. (2011)

This three-part article describes the early years of one of the mother-baby-children groups of the Project for Mothers, Infants, and Young Children of September 11, 2001. The goal of the group was to help prevent the effects of trauma and loss from disrupting the relationships among the mothers, their infants, and growing children. View I by Anni Bergman describes the mothers' states of minds as the group began, when they felt that their worlds had collapsed under them. View II by Sally Moskowitz focuses on the clinical experience of working in the group, transference and countertransference themes, helping the mothers and children with their mourning process, and helping the mothers' relationships to each other, their babies, older children, family, and friends. The evolution of a casual, familial-type atmosphere and format came to be seen by the therapists as very important. The therapists wanted to provide whatever small feeling of normality and comfort possible in the context of the mothers' anguish. This routine atmosphere provided the backdrop against which the mothers could talk about what seemed like unspeakable events, thoughts, and feelings, and process the horrific events, in their magnitude and details. View III by Donna Demetri Friedman describes the play therapy treatment of two preschool-aged siblings in the context of the support group. The children's father had been killed in the World Trade Center attacks. This section describes the themes of the children's play and how they worked through the experience of the loss of their father, the birth of their sibling, and their mother's grief. It also describes their progress a decade later.

Eating well: children and adults with learning disabilities

Crawley H. (2007)

The Caroline Walker Trust was founded in 1988 after the death of the distinguished nutritionist, writer and campaigner, Caroline Walker. Established to continue her work and in her spirit, the CWT depends wholly on donations, legacies and project grants.

The work of the CWT is particularly targeted towards vulnerable groups and people who need special help. We produce nutritional and practical guidelines for both young and old.

Economic valuation of informal care: lessons from the application of the opportunity costs and proxy good methods

van den Berg B, Brouwer W, van Exel J, Koopmanschap M, van den Bos G, Rutten F. (2006)

This paper reports the results of the application of the opportunity costs and proxy good methods to determine a monetary value of informal care. We developed a survey in which we asked informal caregivers in The Netherlands to indicate the different types of time forgone (paid work, unpaid work and leisure) in order to be able to provide care. Moreover, we asked informal caregivers how much time they spent on a list of 16 informal care tasks during the week before the interview. Data were obtained from surveys in two different populations: informal caregivers and their care recipients with stroke and with rheumatoid arthritis (RA). A total of 218 care recipients with stroke and their primary informal caregivers completed a survey as well as 147 caregivers and their care recipients with RA. The measurement of care according to both methods is more problematic compared to the valuation. This is especially the case for the opportunity costs method and for the housework part in the proxy good method. More precise guidelines are necessary for the consistent application of both methods in order to ensure comparability of results and of economic evaluations of health care.

Education and Poststroke Separation Among Couples with Mutual Children

Hedlund, Ebba, Kåreholt, Ingemar, Trygged, Sven (2011)

The objective of this study based on Swedish registers is to examine the influence of socioeconomic position on poststroke divorce and separation using education as a marker. People aged 18 to 64 who suffered a first stroke between 1992 and 2005 were included if they were married or cohabiting and had mutual children. The material included 42,026 first stroke cases and 424,281 nonexposed persons, both populations divided into three different educational groups. Results show that the risk of separation is much higher in the incident year and in the first poststroke year, above all among people with only compulsory (elementary) education.

Effect of trauma on the mental health of Palestinian children and mothers in the Gaza Strip

Thabet, A. A., Abed, Y., & Vostanis, P. (2001)

A cross-sectional study was conducted among 286 Palestinian children 9-18 years of age and their mothers in the Gaza Strip. Traumatic events recollected by children living in areas of conflict, the prevalence of post-traumatic stress reactions and the relationship between children's and mothers' mental health were investigated. The Gaza Traumatic Events Checklist, Impact of Event Scale (IES) and General Health Questionnaire (GHQ) were used to measure outcome. Children experienced on average four traumatic events; one-third reported significant post-traumatic stress reactions. IES scores were higher among girls and mothers' GHQ scores significantly predicted children's IES scores.

Effectiveness and cost-effectiveness of an internet intervention for family caregivers of people with dementia: Design of a randomized controlled trial

Blom MM, Bosmans JE, Cuijpers P, Zarit SH, Pot AM. (2013)

Background: The number of people with dementia is rising rapidly as a consequence of the greying of the world population. There is an urgent need to develop cost effective approaches that meet the needs of people with dementia and their family caregivers. Depression, feelings of burden and caregiver stress are common and serious health problems in these family caregivers. Different kinds of interventions are developed to prevent or reduce the negative psychological consequences of caregiving. The use of internet interventions is still very limited, although they may be a cost effective way to support family caregivers in an earlier stage and diminish their psychological distress in the short and longer run. Methods/design: A pragmatic randomized controlled trial is designed to evaluate the effectiveness and cost-effectiveness of 'Mastery over Dementia', an internet intervention for caregivers of people with dementia. The intervention aims at prevention and decrease of psychological distress, in particular depressive symptoms. The experimental condition consists of an internet course with 8 sessions and a booster session over a maximum period of 6 months guided by a psychologist. Caregivers in the comparison condition receive a minimal intervention. In addition to a pre and post measurement, an intermediate measurement will be conducted. In addition, there will be two follow-up measurements 3 and 6 months after post-treatment in the experimental group only. To study the effectiveness of the intervention, depressive symptoms are used as the primary outcome, whereas symptoms of anxiety, role overload and caregiver perceived stress are used as secondary outcomes. To study which caregivers profit most of the internet intervention, several variables that may modify the impact of the intervention are taken into account. Regarding the cost-effectiveness, an economic evaluation will be conducted from a societal perspective. Discussion: This study will provide evidence about the effectiveness and cost-effectiveness of an internet intervention for caregivers. If both can be shown, this might set the stage for the development of a range of internet interventions in the field of caregiving for people with dementia. This is even more important because future generations of caregivers will be more familiar with the use of internet.

Effectiveness of a Culturally Adapted Strengthening Families Program 12-16-Years for High-Risk Irish Families

Kumpfer KL, Xie J, O'Driscoll R. (2012)

Background

Evidence-based programs (EBPs) targeting effective family skills are the most cost effective for improving adolescent behavioural health. Cochrane Reviews have found the Strengthening Families Program (SFP) to be the most effective substance abuse prevention intervention. Standardized cultural adaptation processes resulted in successful outcomes in several countries.

Objective

To promote wide-scale implementation and positive outcomes in Ireland, a unique model of inter-agency collaboration was developed plus guidelines for cultural adaptation with fidelity.

Methods

250 high-risk youth and families were recruited to complete SFP and its parent questionnaire. A quasi-experimental 2 group pre- and post-test design was employed where the norms were the comparison group. A 2 × 2 analysis of variance (ANOVA) generated the outcome tables including p values and Cohen's d effect sizes. Evaluation feedback was used to improve outcomes the next year.

Results

All 21 measured outcomes had statistically significant positive results. Larger effect sizes were found for the Irish families than the USA families (d = 0.57 vs. 0.48 for youth outcomes, d = 0.73 vs. 0.65 for parenting and d = 0.76 vs. 0.70 for family outcomes). Overt and covert aggression, criminality and depression decreased more in Irish youth, but the USA youth improved more in social skills.

Conclusions

This study suggests that SFP 12–16 is quite effective in reducing behavioural health problems in Irish adolescents, improving family relationships and reducing substance abuse. Additionally, the Irish interagency collaboration model is a viable solution to recruitment, retention and staffing in rural communities where finding five skilled professionals to implement SFP can be difficult.

Keywords

Family skills trainingParentingIrelandRisk behavioursPrevention of delinquency and substance abuseCultural adaptation

Effectiveness of a video-based therapy program at home after acute stroke: A randomized controlled trial

Redzuan NS, Engkassen JP, Mazlan M, Freddy A, Saini J. (2012)

OBJECTIVE:
To evaluate the effectiveness of an intervention using video to deliver therapy at home for patients with stroke.
DESIGN:
Randomized controlled trial.
SETTING:
The neurology ward and rehabilitation medicine department of a tertiary hospital.
PARTICIPANTS:
Patients with stroke (N=90). There were 44 patients in the intervention group and 46 patients in the control group.
INTERVENTIONS:
The intervention group received a combination of at-home rehabilitation guided by a digital videodisk containing therapy techniques and twice-monthly outpatient follow-up for 3 months. The conventional therapy group (control) attended weekly outpatient therapy sessions.
MAIN OUTCOME MEASURES:
The primary outcome measure was the modified Barthel Index (MBI) score. The secondary measures were the incidence of poststroke complications and the Caregiver Strain Index.
RESULTS:
At 3 months, there were no significant differences with regard to the number of patients with improved MBI score, complication rate, or Caregiver Strain Index score between the 2 groups. Both groups had significant increases in the MBI score at 3 months (P<.001 for both groups). Regression analysis revealed that only stroke severity significantly influenced the MBI score (P<.001), complication rate (P<.01), and caregiver stress level (P<.05).
CONCLUSIONS:
Video-based therapy at home for post-acute stroke patients is safe, does not negatively impact independence, and is not stressful for caregivers.

Effectiveness of a video-based therapy program at home after acute stroke: A randomized controlled trial

Redzuan NS, Engkassen JP, Mazlan M, Freddy A, Saini J. (2012)

OBJECTIVE:
To evaluate the effectiveness of an intervention using video to deliver therapy at home for patients with stroke.
DESIGN:
Randomized controlled trial.
SETTING:
The neurology ward and rehabilitation medicine department of a tertiary hospital.
PARTICIPANTS:
Patients with stroke (N=90). There were 44 patients in the intervention group and 46 patients in the control group.
INTERVENTIONS:
The intervention group received a combination of at-home rehabilitation guided by a digital videodisk containing therapy techniques and twice-monthly outpatient follow-up for 3 months. The conventional therapy group (control) attended weekly outpatient therapy sessions.
MAIN OUTCOME MEASURES:
The primary outcome measure was the modified Barthel Index (MBI) score. The secondary measures were the incidence of poststroke complications and the Caregiver Strain Index.
RESULTS:
At 3 months, there were no significant differences with regard to the number of patients with improved MBI score, complication rate, or Caregiver Strain Index score between the 2 groups. Both groups had significant increases in the MBI score at 3 months (P<.001 for both groups). Regression analysis revealed that only stroke severity significantly influenced the MBI score (P<.001), complication rate (P<.01), and caregiver stress level (P<.05).
CONCLUSIONS:
Video-based therapy at home for post-acute stroke patients is safe, does not negatively impact independence, and is not stressful for caregivers.

Effectiveness of an Internet intervention for family caregivers of people with dementia: results of a randomized controlled trial

Blom MM, Zarit SH, Groot Zwaaftink RB, Cuijpers P, Pot AM (2015)

BACKGROUND: The World Health Organization stresses the importance of accessible
and (cost)effective caregiver support, given the expected increase in the number
of people with dementia and the detrimental impact on the mental health of family
caregivers.
METHODS: This study assessed the effectiveness of the Internet intervention
'Mastery over Dementia'. In a RCT, 251 caregivers, of whom six were lost at
baseline, were randomly assigned to two groups. Caregivers in the experimental
group (N = 149) were compared to caregivers who received a minimal intervention
consisting of e-bulletins (N = 96). Outcomes were symptoms of depression (Center
for Epidemiologic Studies Depression Scale: CES-D) and anxiety (Hospital Anxiety
and Depression Scale: HADS-A). All data were collected via the Internet, and an
intention-to-treat analysis was carried out.
RESULTS: Almost all caregivers were spouses or children (in-law). They were
predominantly female and lived with the care recipient in the same household. Age
of the caregivers varied from 26 to 87 years. Level of education varied from
primary school to university, with almost half of them holding a bachelor's
degree or higher. Regression analyses showed that caregivers in the experimental
group showed significantly lower symptoms of depression (p = .034) and anxiety (p
= .007) post intervention after adjustment for baseline differences in the
primary outcome scores and the functional status of the patients with dementia.
Effect sizes were moderate for symptoms of anxiety (.48) and small for depressive
symptoms (.26).
CONCLUSIONS: The Internet course 'Mastery over Dementia' offers an effective
treatment for family caregivers of people with dementia reducing symptoms of
depression and anxiety. The results of this study justify further development of
Internet interventions for family caregivers of people with dementia and suggest
that such interventions are promising for keeping support for family caregivers
accessible and affordable. The findings are even more promising because future
generations of family caregivers will be more familiar with the Internet.

Effectiveness of Child Case Management Services for Offspring of Drug-Dependent Women

Jansson LM, Svikis DS, Beilenson P. (2003)

Female drug users and their children have many medical and psychosocial problems, yet they often fail to follow through with prescribed treatments. The present study describes a specialized, case management program for children, birth through age 2, exposed to drugs in utero. Evaluation of program efficacy was examined by comparing 2-year outcomes for women who received different intensities of these child case management services. Mothers who received higher intensity care were more likely to be abstinent from illicit drugs and to have retained custody of their child(ren) at 2-year follow-up than those with lower intensity services. Study findings support clinical and economic efficacy of this model of care.

Effectiveness of combining tangible symbols with the Picture Exchange Communication System to teach requesting skills to children with multiple disabilities including visual impairment

Ali E, MacFarland SZ, Umbreit J. (2011)

The Picture Exchange Communication System (PECS) is an augmentative and alternative communication (AAC) program used to teach functional requesting and commenting skills to people with disabilities (Bondy & Frost, 1993; Frost & Bondy, 2002). In this study, tangible symbols were added to PECS in teaching requesting to four students (ages 7-14) with multiple disabilities that included a visual impairment. First, an assessment was conducted to determine the preferred (i.e., reinforcing) and non-preferred items for each participant. Then, a multiple probe design across participants was used to evaluate the effectiveness of the adapted training. Data were collected across baseline, training and maintenance conditions, and generalization probes were conducted periodically throughout all conditions. All four participants learned requesting skills, generalized these skills to their classrooms, and maintained the skills after training. Recommendations are presented for future research regarding the use of adapted PECS with other AAC programs. © Division on Autism and Developmental Disabilities.

Effectiveness of culturally adapted Strengthening Families Programme 6-11 years among Portuguese families

Magalhães CCA, Kumpfer KL. (2015)

Purpose
– The purpose of this paper is to compare the outcomes from the Portuguese Strengthening Families Programme (SFP) with those from other countries to see if they are equally effective despite the new context. SFP was selected for cultural adaptation because comparative effectiveness reviews find that SFP is the most effective parenting and family intervention (Foxcroft et al., 2003, 2012). Standardised cultural adaptations of SFP have resulted in successful outcomes in 35 countries.

Design/methodology/approach
– The outcomes for the SFP six to 11 years Portuguese families (n=41) were compared to the SFP six to 11 years international norms (n=1,600) using a quasi-experimental, non-equivalent control two group pre- and post-test design. A 2×2 ANOVA generated the outcome tables including p-values and Cohen's d effect sizes. Standardised test scales were used and measured 21 parenting, family and child risk and protective factors.

Findings
– Statistically significant positive results (p < 0.05) were found for 16 or 76.2 per cent of the 21 outcomes measured for Portuguese families. The Portuguese effect sizes were similar to the SFP international norms for improvements in the five parenting scales (d=0.61 vs 0.65), five family scales (d=0.68 vs 0.70) and seven children's scales (d=0.48 vs 0.48) despite these norms having larger effect sizes than the USA norms. Hence, the cultural adaptation did not diminish the outcomes and SFP Portuguese families can benefit substantially from SFP participation.

Originality/value
– A Portuguese culturally adapted version of SFP had never been developed or evaluated; hence, this paper reports original findings.

Effectiveness of school-based family and children's skills training for substance abuse prevention among 6-8-year-old rural children

Kumpfer KL, Alvarado R, Tait C, Turner C. (2002)

This research tested the effectiveness of a multicomponent prevention program, Project SAFE (Strengthening America's Families and Environment), with 655 1st graders from 12 rural schools. This sample was randomly assigned to receive the I Can Problem Solve (ICPS) program (M. B. Shure & G. Spivack, 1979), alone or combined with the Strengthening Families (SF) program (K. L. Kumpfer, J. P. DeMarsh, & W. Child, 1989), or SF parent training only. Nine-month change scores revealed significantly larger improvements and effect sizes (0.35 to 1.26) on all outcome variables (school bonding, parenting skills, family relationships, social competency, and behavioral self-regulation) for the combined ICPS and SF program compared with ICPS-only or no-treatment controls. Adding parenting-only improved social competency and self-regulations more but negatively impacted family relationships, whereas adding SF improved family relationships, parenting, and school bonding more.

Effectiveness of Supportive Educative Learning programme on the level of strain experienced by caregivers of stroke patients in Thailand

Oupra R, Griffiths R, Pryor J, Mott S. (2010)

In Thailand, the crude death rate from stroke is 10.9/100,000 population and increasing. Unlike Western countries where community rehabilitation programmes have been established to provide services following the acute stage of stroke recovery, there is no stroke rehabilitation team in the community in Thailand. Therefore, family caregivers are the primary source for ongoing care and support. While family members accompany patients during their hospitalisation, they receive little information about how to assist their relatives, and as a result feel inadequately trained, poorly informed and dissatisfied with the support that is available after discharge. Family caregivers report that they suffer both physically and psychologically and find themselves overwhelmed with strain, experiencing burden and exhaustion. This study aimed to develop and implement a nurse-led Supportive Educative Learning programme for family caregivers (SELF) of stroke survivors in Thailand and to evaluate the effect of the SELF programme on family caregiver's strain and quality of life. This was a non-randomised comparative study with concurrent controls, using a two-group pre-test and post-test design. A total of 140 stroke survivors and 140 family caregivers were recruited; 70 patients/caregiver pair in each group. Caregivers of patients admitted to the intervention hospital following an acute stroke received the intervention, while caregivers of patients admitted to the comparison hospital received the usual care provided at the hospital. The data were collected prior to discharge of the patients and after 3 months. The family caregivers in the intervention group had a significantly better quality of life than the comparison group (GHQ-28 at discharge t = 2.82, d.f. = 138, P = 0.006; and at 3 months t = 6.80, d.f. = 135, P < 0.001) and they also reported less strain (Caregiver Strain Index at discharge t = 6.73, d.f. = 138, P < 0.001; and at 3 months t = 7.67, d.f. = 135, P < 0.001). This research demonstrated that providing education and support to the family caregiver of stroke survivors can reduce caregiver strain and enhance their quality of life.

Effectiveness of the Incredible Years parent training to modify disruptive and prosocial child behavior: A meta-analytic review

Menting, A. T. A., de Castro, B. O., & Matthys, W. (2013)

The present meta-analytic review examined effectiveness of the Incredible Years parent training (IYPT) regarding disruptive and prosocial child behavior, and aimed to explain variability in intervention outcomes. Fifty studies, in which an intervention group receiving the IYPT was compared to a comparison group immediately after intervention, were included in the analyses. Results showed that the IYPT is an effective intervention. Positive effects for distinct outcomes and distinct informants were found, including a mean effect size of d=.27 concerning disruptive child behavior across informants. For parental report, treatment studies were associated with larger effects (d=.50) than indicated (d=.20) and selective (d=.13) prevention studies. Furthermore, initial severity of child behavior revealed to be the strongest predictor of intervention effects, with larger effects for studies including more severe cases. Findings indicate that the IYPT is successful in improving child behavior in a diverse range of families, and that the parent program may be considered well-established.

Effectiveness of the Strengthening Families Programme 10–14 in Poland for the prevention of alcohol and drug misuse: protocol for a randomized controlled trial

Okulicz-Kozaryn K, Foxcroft David R. (2012)

Background

Alcohol and other drug use and misuse is a significant problem amongst Polish youth. The SFP10-14 is a family-based prevention intervention that has positive results in US trials, but questions remain about the generalizability of these results to other countries and settings.

Methods/Design

A cluster randomized controlled trial in community settings across Poland. Communities will be randomized to a SFP10-14 trial arm or to a control arm. Recruitment and consent of families, and delivery of the SFP10-14, will be undertaken by community workers. The primary outcomes are alcohol and other drug use and misuse. Secondary (or intermediate) outcomes include parenting practices, parent–child relations, and child problem behaviour. Interview-based questionnaires will be administered at baseline, 12 and 24 months.

Discussion

The trial will provide information about the effectiveness of the SFP10-14 in Poland.

Trial registration

International Standard Randomised Controlled Trial Number: ISRCTN89673828

Effectiveness of web-based versus folder support interventions for young informal carers of persons with mental illness: a randomized controlled trial

Ali L, Krevers B, Sjöström N, Skärsäter I (2014)

OBJECTIVE: Compare the impact of two interventions, a web-based support and a
folder support, for young persons who care for people who suffer from mental
illness.
METHODS: This study was a randomized control trial, following the CONSORT
statements, which compared the impact of two interventions. Primary outcome
variable was stress, and secondary outcome variables were caring situation,
general self-efficacy, well-being, health, and quality of life of young informal
carers (N=241). Data were collected in June 2010 to April 2011, with
self-assessment questionnaires, comparing the two interventions and also to
detect changes.
RESULTS: The stress levels were high in both groups at baseline, but decreased in
the folder group. The folder group had improvement in their caring situation
(also different from the web group), general self-efficacy, well-being, and
quality of life. The web group showed increase in well-being.
CONCLUSION: Young informal carers who take on the responsibility for people close
to them; suffer consequences on their own health. They live in a life-situation
characterized by high stress and low well-being. This signals a need for support.
PRACTICE IMPLICATIONS: The non-significant differences show that each
intervention can be effective, and that it depends upon the individual's
preferences. This highlights the importance of adopting person-centered approach,
in which young persons can themselves choose support strategy.

Effectiveness of web-based versus folder support interventions for young informal carers of persons with mental illness: a randomized controlled trial

Ali L, Krevers B, Sjöström N, Skärsäter I (2014)

OBJECTIVE: Compare the impact of two interventions, a web-based support and a
folder support, for young persons who care for people who suffer from mental
illness.
METHODS: This study was a randomized control trial, following the CONSORT
statements, which compared the impact of two interventions. Primary outcome
variable was stress, and secondary outcome variables were caring situation,
general self-efficacy, well-being, health, and quality of life of young informal
carers (N=241). Data were collected in June 2010 to April 2011, with
self-assessment questionnaires, comparing the two interventions and also to
detect changes.
RESULTS: The stress levels were high in both groups at baseline, but decreased in
the folder group. The folder group had improvement in their caring situation
(also different from the web group), general self-efficacy, well-being, and
quality of life. The web group showed increase in well-being.
CONCLUSION: Young informal carers who take on the responsibility for people close
to them; suffer consequences on their own health. They live in a life-situation
characterized by high stress and low well-being. This signals a need for support.
PRACTICE IMPLICATIONS: The non-significant differences show that each
intervention can be effective, and that it depends upon the individual's
preferences. This highlights the importance of adopting person-centered approach,
in which young persons can themselves choose support strategy.

Effectiveness outcomes of four age versions of the Strengthening Families Program in statewide field sites

Kumpfer KL, Whiteside HO, Greene JA, Allen KC. (2010)

Family dysfunction is unacceptably high nationally and internationally with high costs to society in adolescent problems. A number of evidence-based (EB) parenting and family interventions have been proven in research to improve children's outcome. The question remains whether these EB family programs are as effective in practice. This article summarizes research outcomes from a quasi-experimental, 5-year statewide study of the 14-session Strengthening Families Program (SFP) with over 1,600 high-risk families. The study compared outcomes including effect sizes for the four different age versions of SFP (SFP 3–5, 6–11, 10–14, and 12–16 years). Quality assurance and program fidelity were enhanced by standardized training workshops, site visits by evaluators, and online supervision. Outcomes were measured using the SFP Parent Retrospective testing battery containing self-report standardized clinical measures of 18 parent, family, and child outcomes. The 2 repeated measures by 4 group ANOVA compared the four different age versions of SFP. All of the outcome variables for the four programs were statistically significant at less than the p < .05 level except for reductions in Criminal Behavior and Hyperactivity in the older 10 to 16 year-olds. The effect sizes were larger than in prior randomized control design of SFP. The average effect sizes for both the Parenting and Family Cluster scores range from a high Cohen's d = .77 for SFP 6−11 years to effect size of d = .67 for SFP 3–5 and 10–14. The largest effect sizes were for improvements for the SFP 6–11 condition in Family Communication and Family Strengths and Resilience ( d = .76 for both), Family Organization ( d = .75), Parental Supervision ( d = .73), Parenting Efficacy ( d = .70), and Positive Parenting ( d = .67). Parental alcohol and drug use was reduced most in the SFP 12–16 year version ( d = .43). (PsycINFO Database Record (c) 2012 APA, all rights reserved)

Effectiveness outcomes of four age versions of the Strengthening Families Program in statewide field sites.

Kumpfer KL, Whiteside HO, Greene JA, Allen KC. (2010)

Family dysfunction is unacceptably high nationally and internationally with high costs to society in adolescent problems. A number of evidence-based (EB) parenting and family interventions have been proven in research to improve children's outcome. The question remains whether these EB family programs are as effective in practice. This article summarizes research outcomes from a quasi-experimental, 5-year statewide study of the 14-session Strengthening Families Program (SFP) with over 1,600 high-risk families. The study compared outcomes including effect sizes for the four different age versions of SFP (SFP 3–5, 6–11, 10–14, and 12–16 years). Quality assurance and program fidelity were enhanced by standardized training workshops, site visits by evaluators, and online supervision. Outcomes were measured using the SFP Parent Retrospective testing battery containing self-report standardized clinical measures of 18 parent, family, and child outcomes. The 2 repeated measures by 4 group ANOVA compared the four different age versions of SFP. All of the outcome variables for the four programs were statistically significant at less than the p < .05 level except for reductions in Criminal Behavior and Hyperactivity in the older 10 to 16 year-olds. The effect sizes were larger than in prior randomized control design of SFP. The average effect sizes for both the Parenting and Family Cluster scores range from a high Cohen's d = .77 for SFP 6−11 years to effect size of d = .67 for SFP 3–5 and 10–14. The largest effect sizes were for improvements for the SFP 6–11 condition in Family Communication and Family Strengths and Resilience (d = .76 for both), Family Organization (d = .75), Parental Supervision (d = .73), Parenting Efficacy (d = .70), and Positive Parenting (d = .67). Parental alcohol and drug use was reduced most in the SFP 12–16 year version (d = .43). (PsycINFO Database Record (c) 2016 APA, all rights reserved)

Effects of a Naturalistic Sign Intervention on Expressive Language of Toddlers With Down Syndrome

Wright, C. A., Kaiser, A. P., Reikowsky, & D. I., Roberts, M. Y. (2013)

PurposeIn this study, the authors evaluated the effects of Enhanced Milieu Teaching (EMT; Hancock & Kaiser, 2006) blended with Joint Attention, Symbolic Play, and Emotional Regulation (JASPER; Kasari, Freeman, & Paparella, 2006) to teach spoken words and manual signs (Words + Signs) to young children with Down syndrome (DS).

MethodFour toddlers (ages 23–29 months) with DS were enrolled in a study with a multiple-baseline, across-participants design. Following baseline, 20 play-based treatment sessions (20–30 min each) occurred twice weekly. Spoken words and manual signs were modeled and prompted by a therapist who used EMT/JASPER teaching strategies. The authors assessed generalization to interactions with parents at home.

ResultsThere was a functional relation between the therapist's implementation of EMT/JASPER Words + Signs and all 4 children's use of signs during the intervention. Gradual increases in children's use of spoken words occurred, but there was not a clear functional relation. All children generalized their use of signs to their parents at home.

ConclusionsThe infusion of manual signs with verbal models within a framework of play, joint attention, and naturalistic language teaching appears to facilitate development of expressive sign and word communication in young children with DS.

Effects of a sexual rehabilitation intervention program on stroke patients and their spouses

Song H, Oh H, Kim H, Seo W. (2011)

The present study was conducted to examine whether a sexual rehabilitation intervention program, which was developed during the present study and designed for stroke patients and their spouses, was effective in terms of sexual knowledge and satisfaction and frequency of sexual activity at 1 month after intervention. The study subjects were conveniently selected from stroke patients admitted to the neurology department at a university hospital located in Incheon, South Korea. A total of 46 subjects (12 couples for the experimental group and 11 couples for the control group) were included. Sexual knowledge, sexual satisfaction, frequency of sexual activity, level of cognitive function, and performance with respect to daily living activities were measured. The results obtained demonstrated that the devised sexual rehabilitation intervention program significantly increased sexual satisfaction and frequency of sexual activity, but that it did not promote sexual knowledge. The present study has meaning because the intervention program could be used as a practical guideline for post-stroke sexual rehabilitation. In addition, the findings of this study provide evidence regarding the usefulness of sexual education and counseling on the sexual health of post-stroke patients and their spouses.

Effects of a web-based stroke education program on recurrence prevention behaviors among stroke patients: a pilot study.

Kim JI, Lee S, Kim JH. (2013)

The effectiveness of methods to prevent stroke recurrence and of education focusing on learners' needs has not been fully explored. The aims of this study were to assess the effects of such interventions among stroke patients and their primary caregivers and to evaluate the feasibility of a web-based stroke education program. The participants were 36 patients with a clinical diagnosis of ischemic stroke within 12 months post-stroke and their primary caregivers. The participants were randomly assigned to either an experimental or a control group. The primary measures included blood chemistry, self-reported health behaviors, sense of control, and health motivation for stroke patients, and caregiver mastery for caregivers. To test the feasibility of the intervention program, the rates of participation and occurrence of technical problems were calculated. The experimental group tended to improve significantly more than the control group in terms of exercise, diet, sense of control and health motivation for the stroke patients and in terms of caregiver mastery for the primary caregivers. The rate of participation in the web-based program was 63.1%. This program, which focuses on recurrence prevention in stroke patients and caregivers, has the potential to improve health behaviors for stroke patients.

Effects of an Emotional Disclosure Writing Task on the Physical and Psychological Functioning of Children of Alcoholics

Gallant MD, Lafreniere KD. (2003)

This study investigated the effects of an emotional disclosure writing task on the physical and psychological functioning of pre-teen and adolescent children of alcoholics (N = 53). Participants were randomly assigned to one of three conditions: An emotional writing group, a non-emotional writing group, or a non-writing control group. Essays written by participants in both the emotional and non-emotional conditions differed significantly in content in hypothesized ways. Contradictory to what was expected, emotional disclosure failed to convey any additional health benefits. A general improvement was found for all groups over time on internalizing symptoms, affect, and physical symptoms.

Effects of an Emotional Disclosure Writing Task on the Physical and Psychological Functioning of Children of Alcoholics.

Gallant MD, Lafreniere KD. (2003)

This study investigated the effects of an emotional disclosure writing task on the physical and psychological functioning of pre-teen and adolescent children of alcoholics (N = 53). Participants were randomly assigned to one of three conditions: An emotional writing group, a non-emotional writing group, or a non-writing control group. Essays written by participants in both the emotional and non-emotional conditions differed significantly in content in hypothesized ways. Contradictory to what was expected, emotional disclosure failed to convey any additional health benefits. A general improvement was found for all groups over time on internalizing symptoms, affect, and physical symptoms.

Effects of coping skills training, group support, and information for spouses of alcoholics: A controlled randomized study

Zetterlind, U., Hansson, H., Åberg-Örbeck, K., & Berglund, M. (2001)

Our aim was to compare the effect of three different interventions in spouses of alcoholics with regard to coping strategies, mental symptoms, hardship, and drinking patterns. The spouses were randomized to three different interventions: 1) information, 2) individual coping skills training, and 3) group support. Follow-up periods were at 12 and 24 months. In this paper the 12-month results are presented. Thirty-nine spouses attended the study. They were recruited from the services of the Department of Alcohol and Drug Diseases, Malmö University Hospital, Malmö, Sweden, and advertisements in the local daily press. The spouses were randomized to 1) 1 standard information session, 2) 4 individual coping skills training sessions, once a month, and 3) 12 group sessions, twice a month. Background data were obtained, and four self-report scales-the Coping Behaviour Scale, Hardship Scale, SCL-90, and AUDIT-were administered at admission and follow-up examinations. At follow-up all three groups had improved significantly with regard to coping behaviour, hardship, and mental symptoms. The coping skills training group and the support group together showed a stronger decrease in psychiatric symptoms (P = 0.1) than the single information session group. The three groups did not differ in coping behaviour and hardship. The findings indicate that changing of coping strategies in spouses of alcoholics can be successful with only one single information session, whereas the reduction of mental symptoms may need longer treatment.

Effects of early life stress on cognitive and affective function: an integrated review of human literature

Pechtel, P., & Pizzagalli, D. A. (2011)

Abstract
RATIONALE:
The investigation of putative effects of early life stress (ELS) in humans on later behavior and neurobiology is a fast developing field. While epidemiological and neurobiological studies paint a somber picture of negative outcomes, relatively little attention has been devoted to integrating the breadth of findings concerning possible cognitive and emotional deficits associated with ELS. Emerging findings from longitudinal studies examining developmental trajectories of the brain in healthy samples may provide a new framework to understand mechanisms underlying ELS sequelae.
OBJECTIVE:
The goal of this review was twofold. The first was to summarize findings from longitudinal data on normative brain development. The second was to utilize this framework of normative brain development to interpret changes in developmental trajectories associated with deficits in cognitive and affective function following ELS.
RESULTS:
Five principles of normative brain development were identified and used to discuss behavioral and neural sequelae of ELS. Early adversity was found to be associated with deficits in a range of cognitive (cognitive performance, memory, and executive functioning) and affective (reward processing, processing of social and affective stimuli, and emotion regulation) functions.
CONCLUSION:
Three general conclusions emerge: (1) higher-order, complex cognitive and affective functions associated with brain regions undergoing protracted postnatal development are particularly vulnerable to the deleterious effects of ELS; (2) the amygdala is particularly sensitive to early ELS; and (3) several deficits, particularly those in the affective domain, appear to persist years after ELS has ceased and may increase risk for later psychopathology.

Effects of family psychoeducation on expressed emotion and burden of care in first-episode psychosis: A prospective observational study

González-Blanch, C., V. Martín-Muñoz, et al. (2010)

The present study aimed to examine the levels and interactions of family burden (FB) and expressed emotion (EE) in first episode psychosis (FEP) patients and, secondly, to observe the potential change after a brief psychoeducational group intervention implemented in a real world clinical setting. Twenty-three key relatives of FEP patients received a brief psychoeducational group intervention. FB and EE were assessed before and after the intervention. EE-change and correlations between variables were examined. Half of the sample of key-relatives showed high levels of EE. No severe family burden was observed. FB and EE did not change after the intervention. Family subjective and objective burden were correlated with emotional overinvolvement, but not with criticism. Brief psychoeducational groups may not be sufficient to reduce FB and EE associated to the experience of caregiving for a family member with a first-episode psychotic disorder. (PsycINFO Database Record (c) 2012 APA, all rights reserved)(journal abstract)

Effects of Four Therapy Procedures on Communication in People with Profound Intellectual Disabilities

Lindsay WR, Black E, Broxholme S, Pitcaithly D, Hornsby N, Lindsay B. (2001)

A number of alternative therapies have recently been employed with people who have intellectual disabilities (IDs). The present study examines the effects of four frequently used therapies on the communication of people with profound ID. Communication was assessed using five measures of positive communication and five measures of negative communication. The therapies assessed were Snoezelen, active therapy, relaxation and aromatherapy/hand massage. There were eight participants in the present study and each received all four of the therapeutic procedures in a counterbalanced design. Treatment procedures were videotaped at sessions 5, 10, 15 and 20, and later scored for defined measures of communication. Both Snoezelen and relaxation increased the level of positive communication and had some effect on decreasing negative communication. However, active therapy and aromatherapy/hand massage had little or no effect on communication. The lack of a no-treatment control is noted, especially in the light of trends seen at baseline. Considering the lack of generalization of therapeutic effects, the present results should be treated with caution.

Effects of maternal mental retardation and poverty on intellectual, academic, and behavioural status of school-age children

Feldman, MA., & Walton-Allen, N. (1997)

The impact of low maternal IQ and poverty was examined through comparison of 27 school-age children of mothers with mild mental retardation to 25 similarly impoverished children of mothers without mental retardation. The children whose mothers had mental retardation had lower IQs and academic achievement and more behavior problems. Not one child with a mother who had mental retardation was problem-free. Boys were affected more severely than were girls. Quality of the home environment and maternal social supports were lower in the group with maternal mental retardation; both measures were negatively correlated with child behavior disorders. Results suggest that being raised by a mother with mental retardation can have detrimental effects on child development that cannot be attributed to poverty alone.

Effects of maternal stimulant medication on observed parenting in mother-child dyads with attentiondeficit/ hyperactivity disorder

Chronis-Tuscano, A., Rooney, M., Seymour, K. E., Lavin, H. J., Pian, J., Robb, A., … Stein, M. A. (2010)

This pilot study of 23 mothers with attention-deficit/hyperactivity disorder (ADHD) and their offspring with ADHD examined the effects of maternal stimulant medication on observed interactions. Parent-child interactions were observed using a structured protocol before and after mothers underwent a 5-week, double-blind stimulant titration. Despite dramatic effects of medication on adult ADHD symptoms, this small pilot and open label laboratory-based study did not identify maternal stimulant effects on observed parenting or child behavior. Given the documented impairments in parenting displayed by adults with ADHD, behavioral parenting interventions may be needed in conjunction with medication for mothers with ADHD to optimize family outcomes.

Effects of Mental illness on family quality of life

Walton-Moss, B., Gerson, L., Rose, L. (2005)

Worldwide, at least 25% of persons and their families are affected by mental illness resulting in significant stress and burden; yet little is known about how the illness affects quality of family life. In this paper, we report a secondary analysis of a grounded theory study that identified the process by which 17 families managed mental illness over time. Families were characterized as Hanging On, Being Stable, or Doing Well based on their responses to caring for relatives with mental illness. Most of the families perceived themselves as Being Stable or Doing Well and four families perceived themselves as Hanging On. In this paper, these descriptors of family quality of life, interpreted within the context of family development and illness trajectories, are presented as a focus of professional support and intervention.

Effects of Parent Skills Training with Behavioral Couples Therapy for alcoholism on children: a randomized clinical pilot trial

Lam WK, Fals-Stewart W, Kelley ML. (2008)

This pilot study examined preliminary effects of Parent Skills Training with Behavioral Couples Therapy on children's behavioral functioning. Participants were men (N = 30) entering outpatient alcohol treatment, their female partners, and a custodial child between 8 and 12 years of age. Couples were randomly assigned to one of three equally intensive conditions: (a) Parent Skills with Behavioral Couples Therapy (PSBCT), (b) BCT (without parent training), and (c) Individual-Based Treatment (IBT; without couples-based or parent skills interventions). Parents completed measures of child externalizing and internalizing behaviors at pretreatment, posttreatment, 6- and 12-month follow up; children completed self-reports of internalizing symptoms at each assessment. Only PSBCT participants reported significant effects on all child measures throughout the 12-month follow up. PSBCT showed medium to large effects in child functioning relative to IBT, and small to medium effects relative to BCT from baseline through follow up. Effect sizes suggest clinically meaningful differences between PSBCT and both BCT and IBT that warrant further empirical evaluation of BCT with parent training for alcohol-abusing men and their partners.

Effects of Parent Skills Training with Behavioral Couples Therapy for alcoholism on children: a randomized clinical pilot trial.

Lam WK, Fals-Stewart W, Kelley ML. (2008)

This pilot study examined preliminary effects of Parent Skills Training with Behavioral Couples Therapy on children's behavioral functioning. Participants were men (N = 30) entering outpatient alcohol treatment, their female partners, and a custodial child between 8 and 12 years of age. Couples were randomly assigned to one of three equally intensive conditions: (a) Parent Skills with Behavioral Couples Therapy (PSBCT), (b) BCT (without parent training), and (c) Individual-Based Treatment (IBT; without couples-based or parent skills interventions). Parents completed measures of child externalizing and internalizing behaviors at pretreatment, post-treatment, 6-and 12-month follow-up; children completed self-reports of internalizing symptoms at each assessment. Only PSBCT participants reported significant effects on all child measures throughout the 12-month follow up. PSBCT showed medium to large effects in child functioning relative to IBT, and small to medium effects relative to BCT from baseline through follow up. Effect sizes suggest clinically meaningful differences between PSBCT and both BCT and IBT that warrant further empirical evaluation of BCT with parent training for alcohol-abusing men and their partners.

Keywords: children of alcoholics, parent training, behavioral couples therapy, alcoholism treatment, child functioning

Det finns någon därinne: om vård, värde och värderingar vid förvärvad hjärnskada

Carolusson, Susanna (2002)

Hur är det att förlora en vuxen son, som överlever till ett nytt och annorlunda liv med en svår hjärnskada? Kan vårdpersonal, personliga assistenter, pedagoger och anhöriga lära sig att uppskatta det unika hos varje patient, klient, kund, brukare och närstående? Patient, klient, kund, brukare, handikappad, funktionshindrad ... Alla dessa försök att hitta en värdig etikett på den som är beroende av stöd avslöjar ett mycket större, outtalat problem med vår attityd och vår rädsla för det annorlunda. Tobias cyklade omkull och slog sönder vänster hjärnhalva. Tobias mamma, författaren, berättar personligt om vården och bemötandet från och med det akuta omhändertagandet, genom intensivvård och rehabilitering till upprättandet av en vardag, en process på drygt fyra år. Närståendes och anhörigas reaktioner beskrivs ingående. Författaren lyckas förmedla att förtvivlan och ovisshet kan gå hand i hand med kraft, inspiration och hopp, trots förlustens skoningslösa konsekvenser. Personalens bemötande beskrivs också, men ur ett mer professionellt perspektiv, med såväl beröm, som kritik och konstruktiva förslag. Två perspektiv förmedlas: Hur föräldrarna blir traumatiserade, sårbara och reagerar på ett sätt som liknar perioden efter barnafödande, samt hur deras utsatthet och trevande försök att hantera läget, ständigt avbryts för en nödvändig kamp mot snäva perspektiv hos personer i beslutsfattande position. Det andra perspektivet är professionellt; läsaren inspireras att reflektera, de personliga exemplen blir material att fundera över ur ett generellt bemötandeperspektiv: Vilka värden och värderingar möter vi hos oss själva och andra, när en medmänniska förlorar så mycket av allt det som format hans/hennes identitet och vår relation? Boken fyller en lucka i vård-, psykologi- och omsorgsprogram. Personal får inspiration i arbetet. Anhöriga och drabbade känner igen sig och upplever ett stort stöd i denna berättelse, som är lika aktuell idag 2012 som då första utgåvan publicerades

Det handlar också om tid och pengar: Anhörigomsorg, försörjning, lagar

Sand Ann-Britt (2014)

Kunskapsöversikten syftar till att skapa en överblick över relevant forskning och utveckling inom området anhörigomsorgens konsekvenser för försörjning och ekonomi, samt att bidra till att stimulera och stödja utvecklingsarbete inom detta område. Målgruppen för kunskapsöversikten, lliksom för Nka:s arbete i övrigt, är anhöriga oah deras närstående, anställda inom vård och omsorg samt inom hälso- och sjukvård, beslutsfattare inom området, aktiva inom idéburna organisationer, studenter, lärare och forskare.

Det outsagda och ohörsammade lidandet: tillvaron för personer med långvarig psykossjukdom och deras närstående.

Syrén, S. (2010)

Syrén, Susanne (2010). Det outsagda och ohörsammade lidandet. Tillvaron för personer med långvarig psykossjukdom och deras närstående (Being in the world with long term psychotic illness – the unspoken and unheard suffering), Linnaeus University Dissertations No 6/2010. ISBN: 978-91-86491-07-9. Written in Swedish with a summary in English.Aim: The overall aim of the thesis was to describe the lived experience of being in the world with long term psychotic illness. This is described from three perspectives; the perspective of persons diagnosed with long term psychotic disorder; the perspective of their relatives; and a family perspective. Method: Three studies were conducted guided by a reflective lifeworld approach grounded in phenomenology. The data were generated through individual, group, and family interviews. Data were analyzed for essential meanings of being in the world. Results: Persons with long term psychotic illness live in a borderland of paradoxes between the usual and unusual. For the ill persons the existence is incomprehensible and defenceless with feelings of not being at home in the body and in the world. They search for themselves in a care context that is contradictory, simultaneously good and hostile. These experiences are mostly unspoken, a struggle with doubts about having health or illness, what is good or evil, and about being usual or unusual. The relatives exist in a dilemma of the possible and impossible, a continual infinite struggle. Co-existing with their ill family member is a communion and a longing for togetherness is prominent. Relatives struggle with responsibilities for themselves and for their ill family member. In these unheard struggles the relatives yearn for participation in the formal care context. Family interviews with persons with long term psychotic illness and their relatives revealed a co-existence hovering between chaos and boredom while striving for a peaceful and quiet life. Thefamilies search for constancy and predictability in the presence of incomprehensible and threatening dangers. The experience of being a We balances the unshared meanings of being in the world and the loss of being able to experience and do things together. The experience of being a We keeps their individual existence and co- existence from falling apart.Conclusion: Persons with long term psychotic illness and their relatives have to withstand extensive existential suffering, which is unspoken and unheard. Formal caring should be existential caring, supporting the ill person's comprehensibility and understanding of life, and feelings and experiences of being at home. Further, relatives should be acknowledged both as persons and carers and invited to participate in formal care. These results also point to the importance of strengthening feelings of togetherness and of being a We through systemic oriented existential conversations, where the ill person, their relative and a formal carer converse together.

Det slutar inte vid 65. En rapport om äldre våldsutsatta kvinnor

Länsstyrelsen i Stockholm (2012)

Kunskapen om våld mot äldre kvinnor är mycket begränsad. Som ett led i att åtgärda bristerna genomförde Länsstyrelsen i Stockholms län under våren och hösten 2011 en utbildning i tre steg för drygt 500 personer verksamma inom äldreomsorgen i länet. I denna rapport beskrivs de resultat och synpunkter som framkommit efter utbildningssatsningen.

Det späda barnet som anhörig

Stiftelsen Almänna Barnhuset (2010)

Rapporten innehåller bl.a. en forskningsöversikt över vad vi idag vet om tidig intervention, behandling och tvärfackligt samarbete när det gäller psykisk ohälsa/sjukdom hos mammor under graviditeten och efter förlossning. Forskning visar att för denna grupp har selektiv prevention visat sig effektiv och betydelsefull.
Det saknas idag stöd till de mest behövande spädbarnsfamiljerna och det finns en tydlig lucka i vårdkedjan. Organisationen för stöd till föräldraskapet och "relationen" mellan föräldern och det späda barnet behöver få en form inom svensk hälsovård. Ett flertal spädbarnsverksamheter har lagts ner i landet och det finns stora brister i tillgången på samspelsbehandling, där föräldrar med svårigheter i föräldraskapet kan få hjälp och stöd att reglera samspelet.
Vi hoppas och tror att denna rapport kan vara ett bra stöd i det fortsatta viktiga arbetet att samverka för att stödja det späda barnet som anhörig till en förälder med psykisk sjukdom. Detta blir än mer angeläget utifrån den nya lagstiftningen i HSL och LYHS.

Det är bara att kämpa på. Barns upplevelse av habilitering, skola och fritid, samt kommentarer från föräldrar: Teknik, Kommunikation Handikapp, rapport 34

Bernehäll Claesson, I. (2003)

Syftet med denna rapport är att belysa hur barn med cerebral pares mellan
tio och sjutton år upplever sina möjligheter att påverka stödinsatser och
behandlingsmetoder som de erhåller från olika institutioner samt att öka
kunskaperna om deras unika situation. Det innebär att intresset fokuserar på
barnens upplevelser och erfarenheter av habilitering, skola och fritid. Dessa
barns vardag skiljer sig i många avseenden från andra barns vardag.
Metoden som använts är intervjuer med barnen men jag har även talat med
föräldrarna. Med hjälp av barnhabiliteringen vid Kärnsjukhuset i Skövde,
Handikappförvaltningen i Järfälla kommun samt Mullback Institutet i
Karlsborg, har jag fått kontakt med familjerna. De har tillfrågat familjerna
om intresse att delta. De flesta intervjuer har genomförts i barnens hem, en
på ett fritidshem samt två på Mullback Institutet.
Resultatet visade att barnen är relativt nöjda och tycker det mesta fungerar
bra. Det som ibland är problem är kamratkontakterna i skolan och på
fritiden. Många barn känner sig ensamma och isolerade. Föräldrarna anser
att deras barn är i behov av mer träning via habiliteringen och betonar att
kamratkontakterna är ett större problem än vad barnen ibland vill erkänna.

Det är mitt hem. Vägledning om boende och boendestöd för personer med psykisk funktionsnedsättning

Socialstyrelsen (2010)

Vägledningen ger läsaren en historisk tillbakablick för att förstå nutiden och en presentation av viktiga aspekter som gäller de personer som är mottagare av boende- och boendestödsinsatser. Här beskrivs utvecklingen av boende- och boendestödsverksamheterna sedan psykiatrireformen. Det ges också en definition av vad ett hem är, hemmets betydelse för personen och den etiska plattformen som dessa verksamheter ska bygga på. Sedan behandlas målgruppen med fokus på heterogenitet och de skillnader som beror på ålder och diagnos. Dessutom presenteras målgruppens behov av stöd och service samt önskemål om var och hur man vill bo.

Kommunens mål- och planeringsarbete
Nästa del tar upp kommunens mål- och planeringsarbete för boendeverksamheter på ett övergripande plan och vänder sig steg främst till personer som arbetar med kommunal verksamhetsledning och enhetschefer. Här fokuseras innehållet på lagstiftning, tillsynsresultat samt villkor och redskap för verksamheten. Texten innehåller förslag på åtgärder som kan underlätta kommunernas arbete.

Rapporten ger också viktig bakgrundsinformation till främst enhetschefer och boendestödjare om hur man kan tänka kring bostäder. Här diskuteras aspekter som fullvärdig bostad, institutionell prägel, fysisk och psykosocial miljö samt vad som kännetecknar en god boendemiljö.

Utredningsmomentet och standardiserade bedömningsinstrument
Vägledningen innehålle också information om ansökan, biståndsbedömning och beslut när någon ansöker om insatser, information som främst vänder sig till biståndsbedömare och boendestödjare. Socialstyrelsen har tidigare publicerat en handbok om handläggning och dokumentation, här fokuseras på utredningsmomentet och användningen av standardiserade bedömningsinstrument. Dessutom betonas att behovsbedömningar är en kontinuerlig process eftersom en individs behov förändras.

Typer av boendestöd och hur arbetet kan utföras
Informationen om viktiga typer av stöd som förekommer i boendeverksamheter – psykosocialt boendestöd, stöd för att förebygga fysisk ohälsa och förbättra fysisk hälsa samt kognitiva hjälpmedel för personer med psykisk funktionsnedsättning vänder sig främst till boendestödjare. Först behandlas boendestöd som funktion, vem som arbetar med stödet samt vad man kan tänka på när man arbeta i någon annans hem. Kärnan är ny forskning som består av intervjuer med boende om hur de vill att boendestödet ska ges.

I kapitel 9 ges exempel på kognitiva funktionsnedsättningar som komplicerar vardagslivet, en del kognitiva hjälpmedel samt vad man kan tänka på när de ska användas.

Boendestöd utifrån ett folkhälsoperspektiv
Målgruppens fysiska hälsa har visat sig vara ett mycket eftersatt område och i sjunde kapitlet presenteras forskning som jämför målgruppen med befolkningen i övrigt. Texten har ett folkhälsoperspektiv och kan stimulera till insatser i ett boendesammanhang för att förebygga fysisk ohälsa och förbättra gruppens fysiska hälsa. Hälso- och sjukvård i permanenta boenden

Den del av rapporten som tar upp ansvarsfrågor när det gäller hälso- och sjukvården i olika permanenta boenden vänder sig främst till ledningsnivån, enhetschefer och medicinskt ansvariga.

Determinants of quality of life in stroke survivors and their informal caregivers

Jönsson A, Lindgren I, Hallström B, Norrving B, Lindgren A. (2005)

BACKGROUND AND PURPOSE: We examined longitudinal changes of quality of life (QOL) covering physical and mental factors in an unselected group of stroke patients and their informal caregivers. Our hypothesis was that informal caregivers would have better QOL than patients at both follow-ups, and that changes, if any, would be related to the patients' status. METHODS: QOL of 304 consecutive stroke patients and their 234 informal caregivers from the population-based Lund Stroke Register was assessed 4 months after stroke onset with the Short Form 36 (SF-36) questionnaire. SF-36 was repeated for both groups after 16 months together with Mini Mental State Examination (MMSE) and Geriatric Depression Scale (GDS-20) for patients. RESULTS: The patients' mean QOL scores improved between 4 and 16 months after stroke in the socio-emotional and mental SF-36 domains and decreased in the domain physical function. Multivariate analyses showed that the patients' most important determinants of QOL after 16 months were GDS-20 score, functional status, age, and gender. Informal caregivers had better QOL than patients except for the domain role emotional and the mental component summary. The caregivers' most important determinants of QOL were their own age and the patients' functional status. CONCLUSIONS: Our study highlights depressive symptoms in determining QOL of stroke patients. Despite self-perceived deterioration in physical function over time, several other components of QOL improved, suggesting internal adaptation to changes in their life situations. Informal caregivers of stroke patients may be under considerable strain as suggested by their lower emotional-mental scores.

Determining alertness in individuals with profound intellectual and multiple disabilities: the reliability of an observation list

V. Munde, C. Vlascamp, A. Ruijsenaars and H. Nakken (2011)

In the support of individuals with profound intellectual and multiple disabilities (PIMD), assessing the level of alertness is a recurring issue for parents and other direct support persons. Although observations show clear advantages above and beyond other assessment methods, there are problems related to this method as well. Subjectivity of interpretation and low reliability results have been described as the main problems. In the present study, our aim was to estimate the reliability of the Alertness Observation List (AOL) while, at the same time, minimizing the problems entailed in observations. We calculated both the inter-observer agreement and intra-observer agreement for 39 situations. Since the results exceeded the formulated 80%-criterion, we concluded that the AOL was a reliable instrument. However, the large range found in the results was striking. Moreover, observers with different information about the observed individuals came up with different reliability scores. To determine the value of observation of individuals with PIMD, it might well be necessary to judge the actual usefulness that the instrument has in clinical practice, besides the reliability of the results.

Developing a carer identity and negotiating everyday life through social networking sites: an explorative study on identity constructions in an online Swedish carer community

Andréasson, F. Andreasson, J. Hanson, E. (2017)

An overarching reason why carers do not utilise support services is that many people who perform care-giving do not necessarily self-identify as a carer. Understanding the development of carer identities is therefore crucial for the utilisation of different carer-focused health services. This study arose from the European Union-funded INNOVAGE project and aimed to describe how older carers conceptualise and understand their identity as carers on a Swedish online social forum. Theoretically the study adopts a constructionist approach and the method of netnography was applied. The findings reveal that a change in self-perception occurs in the process through which a carer role is acquired. The presence or absence of recognition for the older carers' capacity, knowledge and life situation is seen as filtered through the needs of the care recipient, making the carer identity into an invisible self. This is not least the case when the identity is constructed in alliance with conceptual and moral obligations found within a marital discourse. Nevertheless, the opportunity for online communication may help to create a virtual space of social recognition through which different experiences attached to caring can be discussed. The significance of online communication is here understood as the possibility it presents for carers to be recognised by other carers. It is a process through which an invisible self can become visible.

Developing a falls prevention program for community-dwelling stroke survivors in Singapore: client and caregiver perspectives

Xu T, O’Loughlin K, Clemson L, Lannin NA, Dean C, Koh G. (2019)

Abstract
Purpose: Drawing on the perspectives of stroke survivors, family members and domestic helpers, this study explores participants' experiences of self-perceived fall risk factors after stroke, common fall prevention strategies used, and challenges to community participation after a fall.

Methods: Semi-structured interviews were conducted in Singapore with community-dwelling stroke survivors with a previous fall (n = 9), family caregivers (n = 4), and domestic helpers (n = 4) who have cared for a stroke survivor with a previous fall. Purposive sampling was used for recruitment; all interviews were audio-recorded with permission and transcribed. Thematic analysis was conducted using NVivo (v10) software.

Results: All participants shared their self-perceived intrinsic and extrinsic fall risk factors and main challenges after a fall. For stroke participants and family caregivers, motivational factors in developing safety strategies after a previous fall(s) include social connectedness, independent living and community participation. For family caregivers and domestic helpers, the stroke survivor's safety is their top priority, however this can also lead to over-protective behavior outside of the rehabilitation process.

Conclusions: Reducing the risk of falls in community-dwelling stroke survivors seems to be more important than promoting community participation among caregivers. The study findings highlight that a structured and client-centered fall prevention program targeting stroke survivors and caregivers is needed in Singapore. Implications for rehabilitation Falls after stroke can lead to functional decline in gait and mobility and restricted self-care activities. Community-dwelling stroke survivors develop adaptive safety strategies after a fall and want to be socially connected. However, caregivers see the safety of the stroke survivors as their top priority and demonstrate over-protective behaviors. Fall prevention programs for community-dwelling stroke survivors should target both stroke survivors and their caregivers. A structured and client-centered fall prevention program targeting at multiple risk factors post-stroke is needed for community-living stroke survivors.

Developing and Evaluating a Psychoeducation Program for Caregivers of Bipolar Affective Disorder Patients: Report of a Pilot Project

Bland, R. and C. Harrison (2000)

Family caregivers of people with bipolar disorder experience a range of difficulties in understanding and coping with the impact of the disorder. The Family Support Team at the Princess Alexandra Hospital in Brisbane, Queensland, developed an educational supportive program for families of people with bipolar disorder that sought to improve caregiver knowledge of the illness, reduce caregiver distress, and enhance caregiver coping. The program also sought to moderate caregiver attributions of patient behavior in order to build an illness perspective of behavior. The bipolar program was developed, trialed, and evaluated. Analysis of results shows encouraging improvements for some families in knowledge, distress, attributions, and ways of coping. Practice and research implications include identifying differences with the schizophrenia program, the importance of a problem-solving focus, maintaining a balance between information giving and support, and timing of the intervention.

Developing and evaluating complex interventions: the new Medical Research Council guidance

Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M. (2008)

Complex interventions are widely used in the health service, in public health practice, and in areas of social policy that have important health consequences, such as education, transport, and housing. They present various problems for evaluators, in addition to the practical and methodological difficulties that any successful evaluation must overcome. In 2000, the Medical Research Council (MRC) published a framework1 to help researchers and research funders to recognise and adopt appropriate methods. The framework has been highly influential, and the accompanying BMJ paper is widely cited.2 However, much valuable experience has since accumulated of both conventional and more innovative methods. This has now been incorporated in comprehensively revised and updated guidance recently released by the MRC (www.mrc.ac.uk/complexinterventionsguidance). In this article we summarise the issues that prompted the revision and the key messages of the new guidance.

Developing Key Working

Megoni, S., Oates, J., & Bardsley, J. (2014)

The aim of key working is to ensure the provision of holistic care and support to meet the individual requirements and aspirations of the child, young person and their family. The governement-funded Early Support programme, which ran until 2015, provided a range of key working training and resources includoing these guide's on delivering key working in practice.

The guide summarises key evidence and consistent elements of a key working approach, including an analysis of the implications of key working that cuts across health, social care and education.

Developing measures of perceived life quality - Results from several national surveys

Andrews, F. M., & Withey, S. B. (1974)

This report presents the current status of a series of studies oriented toward the assessment of perceived life quality. The conceptual model proposes that a person's overall sense of life quality is understandable as a combination of affective responses to life 'domains', which are of two types-role situations and values. Over 100 items used to measure a wide variety of domains and 28 items assessing perceived overall life quality are presented. Various subsets of these items were used in interviews with several representative samples of American adults. Based on these data the domain items were grouped into a smaller number of semi-independent clusters which were internally stable across 10 different subgroups of the respondents and whose interrelationships were highly replicable in independent national samples. A series of analyses, some replicated in more than one survey showed: (1) an additive combination of 12 selected domains explained 50–60% of the variance in an index of overall life quality, (2) neither other domains nor several social characteristic variables contributed additional explanatory power, (3) this level of explanation was achieved in each of 22 subgroups of the population, and (4) additive combinations of domains worked as well as more complicated combinations.

Developing service to support parents caring for a technology-dependent child at home

Kirk, S., & Glendinning, C. (2004)

BACKGROUND:
A group of children with complex health care needs have emerged as a result of medical advances and government policies emphasizing the community as the arena for care. Some of these children remain dependent on the medical technology that enabled them to survive and require care of a complex and intensive nature to be carried out by their parents at home.
AIMS:
To explore the experiences of families caring at home for a technology-dependent child; to examine their needs for practical and other support; and to examine how far services are currently meeting these needs. Methods In-depth interviews were conducted with the parents of 24 technology-dependent children and with 44 health, social care and other professionals.
RESULTS:
Services in the community were not sufficiently developed to support this group of families. Major problems were identified in the purchasing and provision of both short-term care/home support services and specialist equipment/therapies in the community. Service provision could be poorly planned and co-ordinated at an operational level and few families had a designated key worker. Parents felt that professionals did not always recognize either the emotional costs entailed in providing care of this nature or their expertise in caregiving. Information-giving to parents was often described as poor and participants reported that hospital professionals failed to negotiate the transfer of caregiving responsibility to parents.
CONCLUSIONS:
Services need to work in partnership with families and with each other at both strategic and operational levels, to develop integrated and co-ordinated services that can meet the needs of this group of families.

Developing the concept of family involvement and alienation questionnaire in the context of psychiatric care

Ewertzon, M., K. Lützén, et al. (2008)

Research shows that family members of people with a mental illness often experience a lack of involvement in the psychiatric care of their relative. An interpretation of the findings of these studies raises the question of whether the family members' experience of not being involved can be conceptualized in terms of alienation towards mental health services from their encounter with psychiatric care. In order to explore this possibility, the Family Involvement and Alienation Questionnaire (FIAQ) was constructed, guided by relevant theoretical frameworks and empirical research. The content validity of the questionnaire was evaluated by two groups of experienced researchers who had sound knowledge of the theoretical frameworks used. Validity based on the response process was evaluated by the parents of people with mental illness. The reliability of the questionnaire was evaluated by a test-retest design with a group of 15 family members. The data were analyzed by a non-parametric statistical method. The results of the validity and reliability evaluations showed that of the 46 original items in the questionnaire, 28 would be useful in exploring the concept of family involvement and alienation in the context of psychiatric care. Further, minor modifications could make the FIAQ useful in exploring these concepts in other settings.

Development and Evaluation of the Grief and Communication Family Support Intervention for Parentally Bereaved Families in Sweden

Weber Falk, Megan (2020)

Avhandling

Each year in Sweden, approximately 6,900 children will have a parent diagnosed with cancer. Of all the children in Sweden born between 1990–1992, 5.6% have a parent with cancer and 1.1% of them have already had a parent die from cancer. Bereavement support is an important component in palliative care, which aims to alleviate the physical, psychological, and spiritual suffering of patients and their family members. Several, but not all families participating in the studies in this thesis came from a palliative care setting. Earlier research has shown that parentally bereaved children often experience psychological problems, physical problems, reduced self-esteem, difficulties communicating,school and behavioral problems, and/or complicated grief, with approximately 10% of parentally bereaved children experiencing some type of clinically significant psychological difficulty. Moreover, a child's response to a parent's death is often mediated by how their surviving parent responds to the loss. Still, support for bereaved children and families is limited in Sweden. The overall aim of this research project was to explore and describe psychological health, grief, and family communication among parentally bereaved children and surviving parents and to develop and evaluate a supportive family intervention. Four studies were conducted including an interview study exploring family communication in parentally bereaved families, a questionnaire study examining associations between family communication and psychological health in parentally bereaved children and adolescents, and the adaptation and evaluation of the Grief and Communication Family Support Intervention. Results from these four studies indicated that communication may be an important factor for adjustment following the death of a parent. Specifically, communication in some parentally bereaved families may involve conflict, which may in turn affect child and adolescent psychological health. Results from testing the Grief and Communication Family Support Intervention indicate that it may improve family communication and relationships. Testing the Grief and Communication Family Support Intervention with larger, more diverse samples is necessary to confirm these results. The results imply that helping families find ways to adjust and adapt in healthy ways following the death of a parent, potentially through the Grief and Communication Family Support Intervention, is likely to improve psychological health and communication among bereaved family members.

Development and Evaluation of the Grief and Communication Family Support Intervention for Parentally Bereaved Families in Sweden

Weber hammar, Megan (2020)

Each year in Sweden, approximately 6,900 children will have a parent diagnosed with cancer. Of all the children in Sweden born between 1990–1992, 5.6% have a parent with cancer and 1.1% of them have already had a parent die from cancer. Bereavement support is an important component in palliative care, which aims to alleviate the physical, psychological, and spiritual suffering of patients and their family members. Several, but not all families participating in the studies in this thesis came from a palliative care setting. Earlier research has shown that parentally bereaved children often experience psychological problems, physical problems, reduced self-esteem, difficulties communicating,school and behavioral problems, and/or complicated grief, with approximately 10% of parentally bereaved children experiencing some type of clinically significant psychological difficulty. Moreover, a child's response to a parent's death is often mediated by how their surviving parent responds to the loss. Still, support for bereaved children and families is limited in Sweden. The overall aim of this research project was to explore and describe psychological health, grief, and family communication among parentally bereaved children and surviving parents and to develop and evaluate a supportive family intervention. Four studies were conducted including an interview study exploring family communication in parentally bereaved families, a questionnaire study examining associations between family communication and psychological health in parentally bereaved children and adolescents, and the adaptation and evaluation of the Grief and Communication Family Support Intervention. Results from these four studies indicated that communication may be an important factor for adjustment following the death of a parent. Specifically, communication in some parentally bereaved families may involve conflict, which may in turn affect child and adolescent psychological health. Results from testing the Grief and Communication Family Support Intervention indicate that it may improve family communication and relationships. Testing the Grief and Communication Family Support Intervention with larger, more diverse samples is necessary to confirm these results. The results imply that helping families find ways to adjust and adapt in healthy ways following the death of a parent, potentially through the Grief and Communication Family Support Intervention, is likely to improve psychological health and communication among bereaved family members.

Development and initial validation of the Swedish Family Satisfaction Intensive Care Questionnaire (SFS-ICQ)

Thermaenius, Johan; Schandl, Anna; Sluys, Kerstin Prignitz (2019)

Abstract:
Objectives Measuring patients satisfaction is an important part of continuous quality improvement in health care. In intensive care, family satisfaction is often used as a proxy for patient experience. At present, no suitable instrument to measure this has been fully validated in Sweden. The purpose of this study was to develop and validate a questionnaire intended to evaluate families' satisfaction of quality of care in Swedish intensive care units. Methods Based on literature and the modification of pertinent items in two existing North American questionnaires, a Swedish questionnaire was developed. Content validity was assessed by experts, and the cognitive method Think Aloud was used with twelve family members of intensive care patients in two different intensive care units. Data was analysed using qualitative content analysis. Findings Seven items in the questionnaire were identified as problematic, causing eight problems concerning questioning of content and 23 concerning misunderstanding. Six of these items were changed in order to be understood the way they were intended, and one item was removed. Conclusion A family satisfaction questionnaire applicable in Swedish intensive care units has been developed and validated for respondents' understanding of the questions being asked. However, further psychometric testing should be performed when more data are available.

Development of the communication complexity scale

Brady, N. C., Fleming, K., Thiemann-Bourque, K., Olswang, L., Dowden, P., Saunders, M. D., & Marquis, J. (2012)

Acknowledgments
This research was supported by Grants P01 HD018955 and R01 DC007684 from the National Institutes of Health. We wish to thank Kris Mathews, Megan Burgardt, and the individuals who participated in this research and their families.
PurposeAccurate description of an individual's communication status is critical in both research and practice. Describing the communication status of individuals with severe intellectual and developmental disabilities is difficult because these individuals often communicate with presymbolic means that may not be readily recognized. Our goal was to design a communication scale and summary score for interpretation that could be applied across populations of children and adults with limited (often presymbolic) communication forms.

MethodThe Communication Complexity Scale (CCS) was developed by a team of researchers and tested with 178 participants with varying levels of presymbolic and early symbolic communication skills. Correlations between standardized and informant measures were completed, and expert opinions were obtained regarding the CCS.

ResultsCCS scores were within expected ranges for the populations studied, and interrater reliability was high. Comparison across other measures indicated significant correlations with standardized tests of language. Scores on informant report measures tended to place children at higher levels of communication. Expert opinions generally favored the development of the CCS.

ConclusionsThe scale appears to be useful for describing a given individual's level of presymbolic or early symbolic communication. Further research is needed to determine whether it is sensitive to developmental growth in communication.

Development of the participation and environment measure for children and youth: conceptual basis

Coster WJ, Law M, Bedell G, Khetani M, Cousins M, Teplicky R. (2012)

Purpose: The purpose of this paper is to describe the conceptual foundation of a new parent-report measure of the participation and environment of children and youth: the Participation and Environment Measure − Children and Youth version (PEM-CY). Methods: The ICF-CY provided an initial conceptual framework. Results from a qualitative study to obtain parent perspectives and in-depth review of the literature were used to identify relevant dimensions, items and rating scales for measurement. Results: Life situations, defined as sets of activity categories, were identified for three settings: home, school and community. Participation was operationalized as a multidimensional construct with three measurement dimensions: frequency, extent of involvement and desire for change. Parallel sets of items examining environmental factors that are perceived to help or facilitate participation were defined in relation to the typical activities of each setting. Conclusions: The PEM-CY provides a new measure of participation and environment that reflects the perspectives of parents of children and youth. The instrument will facilitate research and professional practice to understand and support the participation of children and youth with and without disabilities.
Implications for Rehabilitation
As defined by the International Classification of Functioning, Disability, and Health (ICF), participation and environment are multidimensional constructs that have been challenging to measure.
A new parent-report survey measure has been developed that is feasible for use in large-scale studies of children and youth with and without disabilities.
The instrument examines participation and environment of children and youth aged 5 to 17 years across three major settings: home, school and community.

Developmental effects of exposure to Intimate Partner Violence in early childhood: A review of the literature

Carpenter, G. L., & Stacks, A. M. (2009)

Intimate Partner Violence (IPV) is a prevalent social problem in the United States and women of childbearing age are the most likely victims. The young children born to these women are impacted, however, women are not routinely asked about IPV even when there is evidence that their child has been abused. To highlight the importance of routinely screening for IPV in child welfare and other social service agencies this article reviews typical social-emotional development and physiological/neurological development in early childhood and the impact that IPV and trauma have on these domains of development. Early intervention with young children and caregivers living with IPV provides a significant buffer to the negative effects that witnessing IPV have on children's development and their relationships with caregivers.

Developmental epideiological framwork for family research on depression and aggression.

Kellam SG. (1990)

examine epidemiology in this chapter from several perspectives: demographic, transitional, community, developmental, and lastly, experimental / we use data from epidemiological studies in Woodlawn, beginning in the 1960s and still continuing, to illustrate these perspectives, showing demographic aspects of this urban poor, Black, neighborhood, the mobility or transition of the families over the period of 1966 to 1976, antecedents along developmental paths to aggression and depression from 1st grade through midadolescence / examine epidemiologically within Woodlawn variations in school and classroom environments and in family structure at the time of 1st grade, as well as family evolution through the child rearing style
epidemiological examination of aggression and depression, these being special cases of the more general problem of measuring psychopathology (PsycINFO Database Record (c) 2016 APA, all rights reserved)

Developmental epideiological framwork for family research on depression and aggression

Kellam SG (1990)

examine epidemiology in this chapter from several perspectives: demographic, transitional, community, developmental, and lastly, experimental / we use data from epidemiological studies in Woodlawn, beginning in the 1960s and still continuing, to illustrate these perspectives, showing demographic aspects of this urban poor, Black, neighborhood, the mobility or transition of the families over the period of 1966 to 1976, antecedents along developmental paths to aggression and depression from 1st grade through midadolescence / examine epidemiologically within Woodlawn variations in school and classroom environments and in family structure at the time of 1st grade, as well as family evolution through the child rearing style epidemiological examination of aggression and depression, these being special cases of the more general problem of measuring psychopathology (PsycINFO Database Record (c) 2012 APA, all rights reserved)

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