Peer-reviewed article
Well-Being of Families with a Child with Profound Intellectual and Multiple Disabilities
Siméon T. A. Lahaije, Jorien Luijkx, Aly Waninge, Annette A. J. van der Putten ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This study examined the well-being of 82 family members from 44 Dutch families who care for a child with profound intellectual and multiple disabilities. Families reported moderately good overall well-being, but were least satisfied with emotional support. Parents reported lower well-being than siblings, and well-being decreased with age. The findings suggest that families caring for children with complex disabilities need additional support, particularly for emotional well-being.
Key points
- Families scored lowest on emotional well-being compared to other well-being domains
- Siblings reported higher well-being scores than parents
- Well-being scores on emotional, material, and disability-related support decreased with respondent age
- Despite moderate satisfaction overall, families identified insufficient emotional support as a key gap
- The study included 82 participants across 44 families with children with profound intellectual and multiple disabilities
Limitations
The study is descriptive and does not test an intervention, so it cannot tell us what support strategies would be effective. The sample is from the Netherlands only, limiting generalisability to other countries with different support systems.
Abstract
In disability research, there is an increased focus on the well-being of families with a child with a disability, also known as family quality of life (FQOL). However, the well-being of families with a child with profound intellectual and multiple disabilities (PIMD) has not yet been explored, even though their well-being may be affected by the pervasive support needs they need to manage. In turn, sufficient well-being of the family is necessary to guarantee adequate support and thus well-being for the person with PIMD. The purpose of this study was to examine the well-being of families with a child with PIMD, including possible differences between parents and siblings, and how individual and familial factors are related to FQOL. A total of 82 participants from 44 families with a child with PIMD in the Netherlands participated. Multilevel models were employed to analyze FQOL scores and which factors significantly affected scores. Families scored moderately high on both total score and subscales, scoring lowest on emotional well-being. There were significant differences between parents and siblings and a significant effect of age of the respondent on emotional well-being, material well-being, and disability-related support. Siblings scored higher than parents, and scores decreased with age on these domains. Although families with a child with PIMD scored, on average, satisfactory on their FQOL, they were least satisfied with the support for their emotional well-being, and may therefore require additional support for this aspect of their family life. Results of this study contribute to understanding the lives of families with a child with PIMD and their support needs.