Professor Christine Bigby1, Professor Jacinta Douglas1, Dr Elizabeth Smith1, Professor Terry Carney2, Dr Shih-Ning Then3, Dr Ilan Wiesel4
1La Trobe University, Australia, 2The University of Sydney, Sydney, Australia, 3Queensland University of Technology, Brisbane, Australia, 4University of Melbourne, Melbourne, Australia
Supported decision making is a key mechanism to support the rights of people with intellectual disabilities to participate in decision making about their own lives. This study aimed to understand the issues that parents found difficult in supporting exploration of their adult child’s preferences and assisting them to understand decision constraints or consequences. It also explored parental strategies for grappling with these.
A social constructionist perspective was used, and data collected through in-depth and repeated interviews with parents of adults with intellectual disabilities. Twenty-three parents participated in 3 or more interviews. Data were analysed using grounded theory methods.
Results fell into two categories. Making the right decision captured parental uncertainties about the ‘right decision’ and concern about issues such as their adult’s limited awareness of possibilities or impact of preferences on longer term goals. Parental visions for their adult’s future informed their support strategies which centred around Grappling with uncertainty, and were about controlling, influencing, or attempting to expand horizons of the adult.
This in-depth account of difficulties faced by parents and their strategies adds knowledge of the lived experiences of parents, important for developing capacity building resources and accountability mechanisms for supported decision-making schemes.
Professor Christine Bigby is the Director of the Living with Disability Research Centre, LaTrobe University.