Caregiver identity in health research: mothers of children with disabilities share their experiences with partnering on health research studies

Engaging healthcare users and families in health research studies as partners – rather than as ‘research subjects’ in the traditional sense – is a growing trend in healthcare. This article is based on interviews with mothers of children with disabilities who partner in research studies on behalf of their children. For these mothers, participating in research is an identity-building activity that (1) builds on and validates their caregiving …