Background Family quality of life is a relatively new field of study. Research has primarily concentrated on families of children and young adults with intellectual disability (ID).
Method This project explored the concept of family quality of life from the perspective of older parents who had adult children with ID aged 40+. Focus groups, individual interviews and surveys investigated family issues related to maintaining or enhancing family quality of life.
Results Parents reported positive aspects of lifelong caregiving and quality of family life. There were concerns for the health of all family members, the social lives of their adult child, long-term living arrangements and the role of siblings.
Conclusion Current family and service issues that need to be addressed are related to funding and finances, staffing, and the need to adapt to age-related needs.