No abstract

Increased choice and control is a driving force of current disability policy in Australia for people with disability and their families. Yet little is known of how adults with intellectual disability (ID) actually experience choice and control within their family relationships. We used interpretative phenomenological analysis of individual, semistructured interviews conducted with 8 Australian adults with ID to understand the meaning given to their experience of family support received around choice and decision making. Three themes were identified: (1) centrality of family, (2) experience of self-determination, and (3) limitations to choice and control. The participants identified trusted family members from whom guidance around choice and decision making was both sought and received, often involving mutual decision making and limitations to control.

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.

Background: The cognitive and communication challenges experienced by people with intellectual disability present difficulties for health professionals, particularly in the face of illness and dying. Aim: To explore the experiences of specialist palliative care staff in talking with people with intellectual disability about their dying and death, and factors that influence these conversations. Design: An inductive thematic analysis was conducted on data from a larger qualitative semi-structured interview study. Setting/participants: Twenty palliative care staff from health services across Australia were interviewed. Participants were employed in multidisciplinary specialist palliative care teams and had provided palliative care to dying persons with intellectual disability. Results: Specialist palliative care staff did not consistently talk with people with intellectual disability about their dying and death. Conversations were influenced by (a) the perceived capacity of the person with intellectual disability, (b) experience and expertise of palliative care staff, (c) the relationship between palliative care staff and dying person and (d) values of palliative care staff and other caregivers (namely family members and paid carers). Conclusions: Specialist palliative care staff experience difficulties in talking with people with intellectual disability about their dying. Development of communication guidelines, resources and training for palliative care teams are urgently required to improve palliative care for this patient group. A more comprehensive research agenda on the needs of people with intellectual disability and their caregivers in palliative care is needed, with a particular focus on strategies to effectively communicate about dying and death.