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

Abstract

There is an increasing expectation that children, young people and their parents should participate in decisions that affect them. This includes decisions about their health and social care and collective or public decisions about the way in which services are designed, delivered and evaluated. Indeed this has become a policy priority across the UK (Franklin and Sloper, 2009). The participation of disabled children and young people has been slow to develop and concerns have been expressed about progress in this area. This ESRC funded study aimed to explore the experience and outcomes of the participation of disabled children, young people and their parents in health and social care decisions. Participants, recruited by purposeful sampling, included 18 disabled children and young people, 77 parents and 90 professionals from the Southern Trust, Northern Ireland. This mixed methods study, that included surveys, a focus group, interviews and participatory methods of research with children and young people, was designed and informed by 2 service user groups who were consulted at various stages of the research process. Results showed that for most disabled children and young people, decision making was firmly grounded in a family centred model. However, when they were drawn into participatory processes this created a sense of independence and self- confidence. Parents in this study wanted to be fully involved in all decisions made with professionals and felt the need to protect their child on the one hand, whilst encouraging their independence on the other. Clearly the onus is on practitioners to support both children and young people and their parents during decision making, whilst acknowledging the individual needs of those concerned. Based on the findings of this research a new Family Participation Model is proposed as a mechanism for further understanding how participation operates for these particular families and guiding future enquiry around this area. Key recommendations for practice, services, policy and future research are explored.

Date of Award	Jul 2014
Original language	English
Awarding Institution	Queen's University Belfast
Supervisor	Geraldine Macdonald (Supervisor) & Berni Kelly (Supervisor)