Meeting the Information Needs of Families of Children with Chronic Health Conditions

Abstract

Families of disabled children 1 have many questions about their child’s condition, prognosis, and effective treatments and therapies. This commentary considers how researchers and clinicians can respond appropriately, by providing families with reliable information and enable them to make informed decisions about health care for their child. First, we consider some of the ways in which we can identify what questions and information families are interested in; then we consider some of the ways in which these information needs might be addressed. We reflect on our experiences and some of the lessons learned at the Peninsula Cerebra Research Unit (PenCRU), University of Exeter Medical School, Exeter, UK. PenCRU seeks to work in partnership with families of disabled children, consistent with the idea of “Family-centered research” (Rosenbaum, 2011).