Transition between child and adult services for people with a learning disability and life limiting condition – what does it mean?

Rebecca Haydock- RNLD, PhD student, School of Human and Health Sciences, University of Huddersfield. Contact e-mail

Having recently commenced a PhD, which is focussing on the transition between child and adult services for people with a learning disability and life limiting condition, I have been deliberating the meaning of transition and exploring issues relating to current models of transition. Transition, the move from child and family orientated services to adult health and social care services has been widely researched; findings often highlight the transition process as a negative experience for young people and their families. Research suggests a lack of transition programmes1, lack of information sharing between services involved1 and young people not being involved in the transition process.2

Despite the increase in publications and policy focusing on transition, the meaning of transition seems variable. The widely quoted definition is Blum et als’ (1993),3 who define transition as ‘the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-orientated health care systems’, is now 20 years old.  There have been attempts to define and conceptualise transition, and the challenges within the transition process identified. Perhaps it is perhaps time to review, update and have a shared consensus (from children, young people and families, and health professionals) for a new definition of transition. Concepts and definitions in health and social care often require refining to reflect socio-political changes and perhaps it is time for the definition of transition to be up-dated.  Revising the concept and definition of transition, which incorporates children, young people and families, and health professionals views is likely to have greater application and meaning in current practice. Models or programmes of transition based on shared perspectives are more likely to ameliorate the current negativity relating to transition experiences.

1 Van Lierde, A. Menni, F. Bedeschi, M.F. Natacci, F. Guez, S. Vizziello, P. Costantino, M.A. Lalatta, F. Esposito, S. (2013). ‘Healthcare transition in patients with rare genetic disorders with and without developmental disability: Neurofibromatosis 1 and Williams–Beuren syndrome.’ American Journal of Medical Genetics Part A. 161 (7), pp. 1666-1674.

2 Ridosh, M. Braun, P. Roux, G. Bellini, M. Sawin, K. (2011). ‘Transition in young adults with spina bifida: a qualitative study.’ Child: Care, health and development. 37 (6), pp. 866- 874.

3Blum, R.W. Garell, D. Hodgman, C.H. (1993) Transition from child-centred to adult healthcare systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. Journal of AdolescentHealth. 14, pp.570-6.

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