Self-determination of adults with intellectual disability : impact of family relationships

Introduction: Self-determination is a guiding principle of individualised, person-centred disability policies. Increased opportunities for choice and control are an expected policy outcome; however adults with intellectual disability may require support to enact choice and decision-making. This support is often provided by close family members, most frequently mothers. Understanding how choice and control are negotiated within family relationships is critical if we are to support adults with intellectual disability to attain a life of their choosing. Methods: Adults with intellectual disability and their key family support people (all mothers), participated in a study exploring the experience of either receiving or giving support for choice and control. Data collected through semi-structured individual interviews, dyadic interviews and body mapping was analysed using an Interpretative Phenomenological Analysis approach. Results: Emerging themes will be presented, including the importance, complexity and impact of family relationships and roles, the influence of family values, and the resulting continuum of support for self-determination. Implications: Self-determination of adults with intellectual disability is impacted by family structure and dynamics, including values, beliefs and roles. Development of self-determination may be best achieved by a whole- of- family, rather than solely individual, approach.