Participation of Disabled Children in Individual Decisions about Their Lives and in Public Decisions about Service Development.

A literature review was carried out to establish what evidence exists about disabled children's participation in decision-making, both regarding their own lives and about the shape of service delivery. There is evidence that disabled children hold and can express views, given the right environment. However, participation of disabled children needs further development. Measures proposed include addressing organisational systems so that they promote participation, extending advocacy services, the adoption of inclusive approaches and staff training, plus education and information for disabled children and their parents. There remain significant gaps in the research evidence available.

[1]  M. Dixon-Woods,et al.  Partnerships with children , 1999, BMJ.

[2]  T. Skinner,et al.  Effects of educational and psychosocial interventions for adolescents with diabetes mellitus: a systematic review. , 2001, Health technology assessment.

[3]  D. Orlowska.  Parental Participation in Issues Concerning their Sons and Daughters with Learning Disabilities , 1995 .

[4]  W. Mitchell,et al.  Quality in services for disabled children and their families: what can theory, policy and research on children's and parents' views tell us? , 2001 .

[5]  L. Meeuwesen,et al.  Doctor-parent-child communication. A (re)view of the literature. , 2001, Social science & medicine.

[6]  Hugh Matthews,et al.  Citizenship, Youth Councils and Young People's Participation , 2001 .

[7]  M E Duffy,et al.  Compliance in adolescents with chronic diseases: a review. , 2000, The Journal of adolescent health : official publication of the Society for Adolescent Medicine.

[8]  J. Noyes,et al.  Enabling young 'ventilator-dependent' people to express their views and experiences of their care in hospital. , 2000, Journal of advanced nursing.

[9]  A. Lahdensuo,et al.  Is asthma self-management cost-effective? , 1997, Patient education and counseling.

[10]  G. Brook.  Children’s competency to consent: a framework for practice: In the first of two articles, Gill Brook introduces a framework of practice designed to help children to make choices in their treatment and care with their parents , 2000 .

[11]  G. Teasdale.  Learning from Bristol: report of the public inquiry into children's heart surgery at Bristol Royal Infirmary 1984-1995 , 2002, British journal of neurosurgery.

[12]  P. Sloper,et al.  Involving disabled and chronically ill children and young people in health service development. , 2003, Child: care, health and development.

[13]  H. Shier.  Pathways to participation: openings, opportunities and obligations , 2001 .

[14]  P. Sloper,et al.  Having a say in health: Involving young people with a chronic illness or physical disability in local health services development , 2003 .

[15]  L. K. Bartholomew,et al.  Self-Management of Cystic Fibrosis: Short-Term Outcomes of the Cystic Fibrosis Family Education Program , 1997, Health education & behavior : the official publication of the Society for Public Health Education.

[16]  J. Barlow,et al.  Focusing on Empowerment: Facilitating self-help in young people with arthritis through a disability organisation , 1996 .