Quality of life for young adults with severe intellectual disability: mothers' thoughts and reflections

Thirty mothers of transition-aged young adults (18-24 years) with severe intellectual disability were interviewed regarding their son or daughter's quality of life. All mothers completed the standardised Quality of Life Questionnaire and responded to several open-ended questions to further delineate quality of life for their child. Mothers were asked to describe quality of life for their young adult child and to evaluate their child's quality of life. Most mothers (73%) mentioned recreation, activities, and hobbies as important components of their young adult child's quality of life. Other common responses included having their son or daughter's basic needs met (53%), having their son or daughter belong to a social network (40%), and having their son or daughter be happy or content (37%). Less common responses included work (7%) for their son or daughter, communication capabilities (10%), health (13%), and consistency (17%) in their son or daughter's life. Mothers' visions for their sons and daughters, environmental and social supports for family members, and family quality of life issues are explored. Discussion focuses on contributions of this study to the burgeoning quality of life literature.