Challenges and ‘Obstacles': Reframing Our Perspective on the Transition into Adulthood for Young People with Life-Limiting and Life-Threatening Conditions
Restricted accessResearch articleFirst published online December, 2016
Challenges and ‘Obstacles': Reframing Our Perspective on the Transition into Adulthood for Young People with Life-Limiting and Life-Threatening Conditions
VinerR. Transition from paediatric to adult care. Bridging the gaps or passing the buck?Arch Dis Child1999; 81: 271–5.
2.
EagleM, BaudouinSV, ChandlerC. Survival in Duchenne muscular dystrophy: improvements in life expectancy since 1967 and the impact of home nocturnal ventilation. Neuromuscul Disord2002; 12: 926–9.
3.
DodgeJA, LewisPA, StantonM. Cystic fibrosis mortality and survival in the UK: 1947–2003. Eur Respir J2007; 29: 522–6.
HirstM, BaldwinS. Unequal Opportunities: Growing up disabled. London: The Stationary Office; 1994.
12.
MorrisJ. Hurtling into a Void. Transition to Adulthood for Young Disabled People with ‘Complex Health and Support NeedsBrighton: Pavilion/ Joseph Rowntree Foundation; 1999.
ForbesA, WhileA, UllmanR. A Multi-Method Review to Identify Components of Practice Which May Promote Continuity in the Transition from Child to Adult Care for Young People with Chronic Illness or Disability. Report for the National Coordinating Centre for NHS Service Delivery and Organisation R&D (NCCSDO), London: The Florence Nightingale School of Nursing and Midwifery, Kings College; 2002.
15.
BeresfordB. On the road to nowhere? Young disabled people and transition. Child Care Health Dev2004; 30: 581–7.
16.
NoyesJ, PritchardA, ReesS. Bridging the Gap: Transition from Children's to Adult Palliative Care. Bangor University, UK; 2014.
17.
DeeL, ByersR, HayhoeH. Enhancing Quality of Life: Facilitating transitions for people with profound and complex learning difficulties. London: Skill UK and University of Cambridge; 2002.
18.
DeeL. Improving Transition Planning for Young People with Special Educational Needs. Oxford: Oxford University Press; 2006.
19.
SloperP, BeechamJ, ClarkeS. Models of Multi-agency Services for Transition to Adult Services for Disabled Young People and Those with Complex Health Needs: Impact and costs Department of Health Policy Research Project Ref 0600005; 2010. http://php.york.ac.uk/inst/spru/research/summs/transitions.php (accessed 17/10/16).
20.
DominicaFS. Douglas House: a ‘respite’ for young people. Eur J Cancer2003; 39: 2669–70.
21.
BeresfordB, HarperM, MukherjeeS. Supporting health transitions for young people with life-limiting conditions: researching positive practice (The STEPP project). Bristol: Together for Short Lives; 2014.
22.
FiorentinoL, PhillipsD, WalkerA. Leaving paediatrics: the experience of service transition for young disabled people and their family carers. Health Soc Care Community1998; 6: 260–70.
LiaboK, NewmanT, StephensJ. A Review of Key Worker Systems for Disabled Children and the Development of Information Guides for Parents, Children and Professionals. Office of R&D for Health and Social Care, Cardiff: Barnardos; 2001.
25.
GrecoV, SloperP, WebbR. An Exploration of Different Models of Multi-agency Partnerships in Key Worker Services for Disabled Children: Effectiveness and Costs. DfES Research Report 656. Nottingham: DfES Publications; 2004.
26.
SloperP, GrecoV, BeechamJ. Key Worker services for disabled children: what characteristics of services lead to better outcomes for children and families?Child Care Health Dev2006; 32: 147–57.
27.
Education, Lifelong Learning and Skills Committee. Policy review of additional educational needs. Part 3: Transition. Cardiff, Wales: National Assembly for Wales; 2007
28.
Welsh Government. Costs and benefits analysis of transition key working an analysis of five pilot sites. Cardiff: National Assembly for Wales; 2013.
29.
Department for Education, Department for Health. Implementing a new 0-25 special needs system. London: Department for Education and Department for Health; 2013.
ReesS. Moving on Together: What makes a successful transition in to adulthood for disabled young people aged 14-25? PhD Thesis, Bangor University, UK; 2016. http://e.bangor.ac.uk/7887/