The experience of mothers supporting self"determination of adult sons and daughters with intellectual disability

Background: The right of people with disability to be self"determining, to live a life of their choosing, is increasingly recognized and promoted. For adults with intellectual disability, support to enable self"determination may be required. This is often provided by family, yet little is understood about the experience of providing such support. Methods: An interpretative phenomenological analysis (IPA) of eight individual, semi"structured interviews with mothers was conducted, to understand the meaning given to their experience of supporting self"determination of their adult son or daughter with intellectual disability. Results: Three superordinate themes were identified: (a) support context; (b) continuum of support roles; and (c) mother's personal concerns. Conclusion: Mothers of adults with intellectual disability experience an ongoing sense of responsibility to balance competing rights and concerns as they support self"determination. This complex, interdependent relationship results in roles that may facilitate, guide, influence and at times restrict choice and control.