Family quality of life in 25 Belgian families: quantitative and qualitative exploration of social and professional support domains

• Published in: Journal of intellectual disability research 2011-12, Vol.55 (12), p.1123-1135
• Main Authors: Steel, R., Poppe, L., Vandevelde, S., Van Hove, G., Claes, C.
• Format: Article
• Language: English
• Subjects: Adolescent; Adolescents; Adult; Adult and adolescent clinical studies; Aged; Belgium; Belgium - epidemiology; Biological and medical sciences; Child; Child, Preschool; Content analysis; Development Strategies; Down Syndrome - epidemiology; Down Syndrome - psychology; Families & family life; Family; Family (Sociological Unit); Family Health - statistics & numerical data; Family Life; Female; Foreign Countries; Humans; Individual Needs; Intellectual deficiency; intellectual disability; Intellectual Disability - epidemiology; Intellectual Disability - psychology; Interviews; Learning disabilities; Male; Medical sciences; Mental Retardation; Middle Aged; Needs; Parents; Parents - psychology; Pleas; Provinces; Psychology. Psychoanalysis. Psychiatry; Psychopathology. Psychiatry; Qualitative Research; Quality of Life; Quality of Life - psychology; Quantitative analysis; Quantitative data; Satisfaction; Semi Structured Interviews; Siblings; Social Services; Social Support; Social Support Groups; support; Threat; Young Adult
• ISSN: 0964-2633; 1365-2788
• DOI: 10.1111/j.1365-2788.2011.01433.x

Background  This article reports on the results of a study conducted in Belgium on family quality of life situated within a larger project focusing on the development of support strategies for young and adolescent siblings of persons with intellectual disabilities. The objectives of this article are twofold: (1) to present the results of the measures contained in the nine domains of the Family Quality of Life Survey‐2006 (FQOLS‐2006) from the perspective of parents (quantitative analysis); and (2) to come to a more in‐depth understanding of two important domains of the FQOLS‐2006 by exploring and comparing the quantitative and qualitative data from open‐ended interviews with parents. Method  The FQOLS‐2006 was completed by the main caregivers of 25 families living in one typical Belgian province. Subsequently, semi‐structured interviews with one or both parents were conducted within the same families. Content analysis was carried out on the transcribed interviews using the qualitative software package MaxQDA. Results  A detailed analysis of the quantitative data together with data from the content analysis of the interviews revealed important issues with regard to two family quality of life domains, support from others and support from services. In general, parents were satisfied with the professional support they received, whereas they were more critical of support from others. Conclusions  The quantitative data from the FQOLS‐2006 were supported and further explained by the qualitative data. These findings highlight the importance of adequate professional support, which is a flexible and capable answer to each family's individual needs. The authors warn of the dangers of ‘handicapism’ and plea for a family‐centred support approach that takes the whole family into account. Finally, they indicate the benefits of increased practical‐pedagogical support.