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 coresearchers. 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.

This article focuses on the social and societal factors that influence family quality of life (FQOL). In this qualitative study from the Netherlands, a multiple case study design was used, in which members of families having a child or children with intellectual and developmental disabilities talked about their experiences during interviews. The data were analysed through a rigorous inductive thematic analysis. Our findings relate to the families’ experiences with their social environment and especially with the support they received. We argue that processes of acceptance and understanding play a role in FQOL. Also, we illustrate how the family members experience their interaction with the community, and how moral norms and values could influence the lives of the families. The families reflected on notions of normality and being different, and sometimes struggled with the implicit norms and values of society, which can impede acceptance and understanding by others. In turn, these norms and values influence the level of support from other people and the possibilities for social interaction with the community.