Family quality of life (FQoL) is an emerging concept to understand and improve the well-being and quality of life (QoL) of families. While there has been a lot of effort to conceptualize life domains of families and measurement tools are devised, few studies concentrate on an in-depth understanding of FQoL. The specific aim of the current study is to understand the relation between individual QoL and FQoL, by studying families with a child/children with intellectual and developmental disabilities (ID/DD) in the Netherlands. This can contribute to a stable foundation of the concept of FQoL. Methods: An explorative case study design was used, in which the parents, sibling, and child with ID voiced their thoughts on their FQoL. The presented case has been analysed through thematic and narrative analysis. A father and a mother with a child with an intellectual disability have joined the research team as co-researchers. The relational dynamics found within the family illuminated an interactive pattern in which the son with ID acted as an Emperor, creating a Golden Cage for other family members and Umbilical Ties among them. The family portrait shows that FQoL is a dynamic and relational concept. By making strict distinctions between individual QoL and FQoL, the dynamics between family members and the way they work alone and/or together to ensure the well-being of the family and its members can easily be overlooked. In addition to the common-sense notion that FQoL and QoL support each other, conflicts and tensions can occur.
Wiley Periodicals, Inc.
Journal of Policy and Practice in Intellectual Disabilities, 2017, 14 (1): 31-38.