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Factors facilitating family functioning in families of children with disabilities: in the context of Swedish habilitation service
Mälardalen University, School of Health, Care and Social Welfare. Karolinska Institutet.ORCID iD: 0000-0002-8244-1437
2013 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

At times it is a challenge for any family to balance resources, abilities, and needs. Challenges that tend to be enhanced when a child has an impairment. Family routines must function and be consistent with the family’s ecology and be meaningful according to the family’s culture. The family’s coping with cultural-environmental, psychosocial, and socioeconomic stresses throughout the diverse phases of the family life cycle has been linked to healthy family functioning. Families that function well and experience health manage to find balance between growth vs. change and stability vs. equilibrium in relation to the exchange between the family as a system and its environment. Families of children with impairments are offered service and support through the Child and Youth Habilitation Services (C-YHS). Earlier only the child was the focus of interventions, but with a family centered perspective the whole family’s well-being is concerned. The overall aim of the thesis is to explore how families of children with impairments use resources aimed to enhance family functioning in relation to challenges in every-day life. This is examined in the context of the support provided by the Child and Youth Habilitation Services (C-YHS). The specific aims were 1) to investigate professionals’ encouragement of parental coping strategies (Study I), 2) to compare the content of issues discussed at the planning meetings with the activities provided by the C-YHS (Study II), 3) to examine the design of a future study focusing on problem solving and how different problem solving styles are related to internal and external resources (Study III) and 4) to explore leisure activities patterns in families of children with profound intellectual and multiple disabilities (Study IV). Descriptive and explorative qualitative and quantitative study designs including longitudinal and cross-sectional studies. The main findings were as follows. Coping types and coping strategies (Study I): families used four types of positive coping. The coping type goal-directed problem-focused was used most and this was also the type of coping that was most frequently encouraged by professionals. Families most used coping strategy was values and this was most often related to information and problem solving in professionals responses. Planning meetings and activities implemented (Study II): families concerns and problems raised at planning meetings set the agenda for activities and actions in everyday intervention. Decisions were also made between planning meetings and affected actions and activities performed in everyday intervention. On top of goals decided in planning meetings decisions were related to managing families’ everyday activities. Pilot study (Study III): analyses of quality indicators of the Social Problem Solving Inventory indicated that it would be possible to discriminate between different problem-solving styles using the instrument in this sample. Result concerning the strengths and weaknesses of the planned web-based procedures showed that problems can arise when adapting questionnaires to a web-based survey, that it was a prerequisite that the family had an individual plan to answer many of the questions and that a stop function added had serious consequences for access to the survey if not completed at one point in time. Involvement in leisure activities (Study IV): families of children with profound intellectual multiple disabilities (PIMD) were involved in both core and balance family leisure activities, but to a lesser degree than families of children with typical development. The PIMD group showed a proportionally higher involvement in core family leisure activities than in balance activities compared to families of children with typical development. Conclusions are to encounter stressors families need different coping strategies. Families’ use of coping strategies is facilitated if they are encouraged by professionals that are aware of the families’ values. Families of children with impairments have concerns about the future and problems related to everyday life. When families concerns and problems are considered by professionals and result in actions and activities, the more the problem solving becomes adapted to their actual needs in everyday life. Resources such as coping strategies and problem solving skills are important to make routines function, and also to enhance and enrich leisure activities where the family spends time together. Family functioning is a complex process where internal and external resources are interrelated. In order to guide the process of providing support to family functioning for families of children with impairments there is a further need for comprehensive measurements to capture the complex process of family functioning. In addition research is needed that connects different aspects of the process of support provision to outcomes for the family and child outcomes.

Place, publisher, year, edition, pages
Stockholm: US-AB , 2013.
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:mdh:diva-21698ISBN: 978-91-7549-106-6 (print)OAI: oai:DiVA.org:mdh-21698DiVA: diva2:651946
Public defence
2013-04-26, Hörsal H2 grön, Alfred Nobels Allé 23, Huddinge Campus syd, Huddinge, 16:19
Available from: 2013-09-27 Created: 2013-09-27 Last updated: 2015-06-29Bibliographically approved
List of papers
1. Identifying and building on family strength - A thematis analysis
Open this publication in new window or tab >>Identifying and building on family strength - A thematis analysis
2009 (English)In: Infants and young children, ISSN 0896-3746, E-ISSN 1550-5081, Vol. 22, no 4, 253-263 p.Article in journal (Refereed) Published
Abstract [en]

In family-centered intervention, one important issue is to support families’ different ways to manage stress. The purpose of this study was to investigate whether professionals encourage positive coping strategies in families of children with disabilities. Data (videotaped planning meetings and interviews) from 5 families enrolled in intervention programs were used. The data were analyzed deductively by applying theoretical concepts of 4 types of positive coping. Goal-directed problemfocused coping was the most frequently used type of coping, together with spiritual beliefs and practices. Professional encouragement of families’ own strategy to solve problems occurring in everyday life must focus not only on explicit problem solving but also on the use of supplemental coping types.

Keyword
Children with disabilities; families; intervention; positive coping; professionals
National Category
Social Sciences
Identifiers
urn:nbn:se:mdh:diva-6806 (URN)10.1097/IYC.0b013e3181bc4d87 (DOI)000270615900003 ()2-s2.0-70349776395 (Scopus ID)
Available from: 2009-09-16 Created: 2009-09-16 Last updated: 2013-11-13Bibliographically approved
2. Collaborative problem-solving in the context of early Childhood Intervention – the link between problems and goals
Open this publication in new window or tab >>Collaborative problem-solving in the context of early Childhood Intervention – the link between problems and goals
2015 (English)In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011, Vol. 17, no 3, 221-239 p.Article in journal (Other academic) Published
Abstract [en]

Swedish Child and Youth Habilitation Services (C-YHS) for children with disabilities and their families' build on regular planning meetings involving families and professionals, and appointments and interventions implemented between meetings. This study explores the content of issues discussed at planning meetings, and the relation between content and activities implemented in everyday interventions. Longitudinal data from five families and their C-YHS-teams were used. Data were analyzed using conventional content analysis. The results illustrate a process with a high degree of correspondence between families' concerns, experienced problems, the formal decisions and the activities they generated. Concerns were focused on the future, and related actions focused on supporting adults in the environment, mostly the parents, thus indirectly relating to the child. Problems were focused on the current situation, and to a larger extent concerned actions directly related to the child. Although a family-centred service, interventions focused on the proximal environment, may be underreported.

National Category
Social Sciences Social Work
Identifiers
urn:nbn:se:mdh:diva-16220 (URN)10.1080/15017419.2013.859175 (DOI)2-s2.0-84929654783 (Scopus ID)
Available from: 2012-11-23 Created: 2012-11-23 Last updated: 2015-12-29Bibliographically approved
3. Problem solving in relation to resources in everyday life in families of children with disabilities: a pilot study.
Open this publication in new window or tab >>Problem solving in relation to resources in everyday life in families of children with disabilities: a pilot study.
2012 (English)In: International Journal of Rehabilitation Research, ISSN 0342-5282, E-ISSN 1473-5660, Vol. 35, no 2, 102-108 p.Article in journal (Refereed) Published
Abstract [en]

Problem solving is recognized as a skill, helping families of children with disabilities to manage problems in everyday life. Family problem-solving skills may therefore be seen as an important outcome of a child and youth habilitation service. The aim of this pilot feasibility study was to examine the design of a future web-based questionnaire study focusing on problem-solving patterns in relation to resources in families of children with disabilities. The descriptive statistical analyses built on data from 13 families and findings showed an overall satisfactory score distribution for three of the included instruments, whereas two instruments showed floor effects in one third of the items. Findings indicated design problems with data collection related to adapting questionnaires to a web-based survey format and to problems with the stop function that was added. Implementing the main study using web-based surveys needs critical considerations according to the choice of the web tool and the recruitment process.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:mdh:diva-16186 (URN)10.1097/MRR.0b013e328351089b (DOI)000303668900003 ()2-s2.0-84861097371 (Scopus ID)
Available from: 2012-11-20 Created: 2012-11-20 Last updated: 2013-11-13Bibliographically approved
4. Family leisure activities in everyday life for families of children with profound intellectual and multiple disabilities
Open this publication in new window or tab >>Family leisure activities in everyday life for families of children with profound intellectual and multiple disabilities
(English)Manuscript (preprint) (Other academic)
National Category
Medical and Health Sciences Educational Sciences
Identifiers
urn:nbn:se:mdh:diva-21700 (URN)
Available from: 2013-09-27 Created: 2013-09-27 Last updated: 2017-02-22Bibliographically approved

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