ABSTRACT
The Donald Beasley Institute is an independent research institute in Dunedin, New Zealand committed to undertaking applied research that will make a difference to the lives of disabled people and their families. The role of families in the framing and process of the research will be highlighted along with an examination of ethical issues arising within researcher–participant relationships. The Otago Family Network involved working with parents and professionals together, with the direction and developments influenced primarily by parents’ concerns. Families also suffer from stereotyping and inaccurate assumptions. Extended families may often be more common in reality than the typical picture presented of ‘Mum, Dad and the kids’. Families did not have their involvement limited by stringent criteria relating to the age or disability of the child. For adults who have mild intellectual disabilities, those most likely to have children, the stigma of the label also adds to these problems of identification.
