The participation of parents of disabled children and young people in health and social care decisions.

ABSTRACT

BACKGROUND: There is widespread acceptance that parents should be fully involved in decisions about their son or daughter's health and social care. This is reflected in partnership models of practice as well as local and national policy across the United Kingdom. Previous research indicates that parents' experiences of decision making with professionals are mixed. AIM: The research reported here aimed to explore parents' experiences of participating in decisions made with professionals about their disabled son or daughter's care. DESIGN: This research used mixed methods including survey methodology and qualitative in depth interviews. SETTING AND PARTICIPANTS: The research was conducted in one Trust in Northern Ireland. Participants were 77 parents of children and young people with a range of impairments aged between 3 and 28 years. RESULTS: Three themes emerged from the data taking the lead, not knowing, and getting the balance right. Parents wanted to be involved in all aspects of decision making. Although parents reported many examples of good practice, there were also times when they did not feel listened to or did not have enough information to inform decisions. DISCUSSION AND CONCLUSION: Parents in this research recounted positive as well as negative experiences. Parents took on a protective role when decisions were made about their son or daughter and at times, reported the need to "fight" for their child. The provision of information remains problematic for these families, and at times, this created a barrier to parents' participation in decision making. Partnership approaches to care that recognize parents' expertise are particularly important to parents when decisions are made with professionals.