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Exploring new roads towards more family quality of life: A study on family quality of life, the family-centered approach, and the relation between both, in families with a child with an intellectual disability in the context of home-based support in Flanders.

Book - Dissertation

Recent research on families with a child with a disability pays much attention to family quality of life (FQOL) and the family-centered approach (FCA). Although plenty of research has been conducted on their theorizing, conceptualization, and measurement, several questions regarding both concepts remain unanswered. In addition, several questions regarding their realization are still unresolved. Moreover, although they are often conceptually linked as outcome and process variable respectively, empirical research on their relation is scarce. The general aim of this dissertation was to study the FCA in home-based support (HBS) for families with a child (0-18 years) with an intellectual disability (ID) in Flanders, the FQOL in these families, and the relation between both. More concretely, we aimed (1) to answer methodological and conceptual questions regarding FQOL and the FCA, (2) to study the realization of FQOL and the FCA in this context, and (3) to investigate the relation between FQOL and the FCA. First, the realization of FQOL (Manuscript 1) and the FCA (Manuscript 2) were studied by a survey. Families with a child with an ID receiving HBS were quite satisfied about their FQOL, although differences were seen between family members and between families. The respondent's age, the parental work situation, as well as the support needs of the child with an ID appeared to affect FQOL (domains). The FCA was largely present in Flemish HBS for families with an child with an ID, albeit parents rated its realization higher than family workers did. Considering family workers' answers, parents' educational level appeared an important factor for parental autonomy. In addition, the relation between FQOL and the FCA was studied (Manuscript 3). A positive relation was found, although a different relation with the components of the FCA was identified for each FQOL domain. Especially the parental work situation and the child's support needs appeared significant predictors of FQOL (domains). Second, participatory case studies were performed. Following six families with a school-aged child with an ID and their family workers over one year, the meaning, realization, applicability, and evolution of the FCA was studied (Manuscript 4). The FCA was to a certain extent realized, although differences were noticed between principles, between cases, and over time. The stories of the six families were also followed from an FQOL point of view (Manuscript 5). Six central domains were identified and their evolution over time was described. The relations between the domains of FQOL were described and ideas concerning bringing more relief into the concept of FQOL were formulated. This doctoral dissertation provides theoretical insights into the concepts of FQOL and the FCA as well as knowledge on their realization in the context of Flemish HBS. With regard to practice, a training for family workers was developed and usable questionnaires on FQOL and the FCA were put forward.
Publication year:2019