SCIE research briefing 4: Transition of young people with physical disabilities or chronic illnesses from children's to adult's services
References
Click here for a full alphabetical list of the references.
(1) Department of Health (2003) A Practical Guide for Disabled People or Carers.
UK central government publication. Full text available.
(2) Luft P. Koch L.C. (1998) Transition of adolescents with chronic illness: overlooked needs and rehabilitation considerations. Journal of Vocational Rehabilitation 10(3): 205-217.
US review of transition issues.
(3) Department of Health (2000). Quality Protects: Disabled Children Numbers and Categories and Families.
UK central government publication.
(4) Morris J. (1999) Hurtling into a Void. Brighton. Pavilion Publishing/Joseph Rowntree Foundation. Summary available.
A review of transition services including material from social service departments and interviews with sixteen young people.
(5)Fox A. (2002) Physicians as barriers to successful transitional care. International Journal of Adolescent Medicine and Health 14(1): 3-7. Abstract available.
Overview and review of barriers to transition.
(6) Scal P. Evans T. Blozis S. Okinow N. Blum R. (1999) Trends in Transition From Pediatric to Adult Health Care Services for Young Adults With Chronic Conditions. Journal of AdolescentHealth 24(4): 259-264. Full text available
US survey analysis of transition programmes and their effectiveness.
(7) White P.H. (1999) Transition to adulthood [Pediatric and Heritable Disorders]. Current Opinion in Rheumatology 11(5): 408-411. Abstract available.
US review of models and assessment tools for transition readiness.
(8) Betz C.L. (1999) Adolescents with Chronic Conditions: Linkages to Adult Service Systems. Pediatric Nursing25(5): 473-476. Abstract available.
US review of transition services.
(9) Court J.M. (1993) Issues of transition to adult care. Journal of Paediatrics and Child Health 29(Suppl 1): S53-S55. Abstract available.
Australian questionnaire survey of 105 young people with diabetes on service transfer related issues.
(10) McDonagh J.E. Foster H.E. Hall M.A. Chamberlain M.A. (2000) Audit of rheumatology services for adolescents and young adults in the UK. Rheumatology 39(6): 596-602. Full text available
UK review of barriers and areas for service development in transitional care.
(11) Ansell B.M. Chamberlain M.A. (1998) Children with chronic arthritis: the management of transition to adulthood. Bailliere's Clinical Rheumatology 12(2): 363-374. Abstract available.
UK case study and review of transition services for children with chronic arthritis.
(12) Fiorentino L. Philips D. Walker A. Hall D. (1998) Leaving paediatrics: the experience of service transition for young disabled people and their family carers. Health and Social Care in the Community 6(4): 260-270. Abstract available.
UK study involving interviews with 87 young people with disabilities with quantitative and qualitative analysis.
(13) Bjarnason D.S. (2002) New Voices in Iceland. Parents and Adult Children: juggling supports and choices in time and space. Disability & Society 17(3): 307-326. Full text available
Icelandic qualitative study involving interviews with 36 young people, 44 parents, 12 teachers and 12 friends.
(14) Conway S.P. (1998) Transition from paediatric to adult-orientated care for adolescents with cystic fibrosis. Disability and Rehabilitation 20(6/7): 209-216. Abstract available.
UK overview of cystic fibrosis transition services.
(15) Warnell P. (1998) The Transition Experience of Epilepsy Patients/Families: Results of a Telephone Survey. Axone 20(2): 31-33. Abstract available.
Canadian telephone survey of ten former patients on their experiences of transition.
(16) Forbes A. While A. Ullman R. Lewis S. Mathes L. Griffiths P. (2001) 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 Co-ordinating Centre for NHS Service Delivery and Organisation R & D (NCCSDO). Full text available
Multi-method review of transition services and models.
(17) Healy H. Rigby P. (1999) Promoting independence for teens and young adults with physical disabilities. Canadian Journal of Occupational Therapy 66(5): 240-249. Abstract available.
Canadian study involving interview with ten young people attending an independence programme, including a four-month follow-up.
(18) Blum R.W. (1995) Transition to Adult Health Care: Setting the Stage. Journal of Adolescent Health 17(1): 3-5. Full text available:
US conference paper and review.
(19) Stevenson C.J. Pharoah P.O.D. Stevenson R. (1997) Cerebral palsy - the transition from youth to adulthood. Developmental Medicine and Child Neurology 39(5): 336-342. Abstract available.
UK questionnaire survey of 74 young people with cerebral palsy and their carers split into older and younger groups. A control group was used when assessing social activities.
(20) Peterson P.M. Rauen K.K. Brown J. Cole J. (1994) Spina Bifida: The Transition into Adulthood Begins in Infancy. Rehabilitation Nursing 19(4): 229-238. Abstract available.
US review and framework for transition for young people with spina bifida.
(21) Savage R.C. Niemann G.W. (2001) Transition Services: Building a Bridge between Adolescence and Young Adulthood. Brain Injury Source5(2): 24, 27-30. Abstract available.
US review of transition services for young people with brain injury.
(22) Koch L.C. (2000) Career development interventions for transition-age youths with disabilities. Work 14(1): 3-11. Abstract available.
US review of strategies to assist and maintain disabled adolescents in work.
(23) Sawin K.J. Cox A.W. Metzger S.G. Horsley J.W. Harrigan M.P. Deaton A. Thompson E.C. (1999) Transition Planning for Youth With Chronic Conditions. National Academies of Practice Forum, 1 (3): 183-196.
US review of the transition process from an interdisciplinary perspective.
(24) Hartman A. DePoy E. Francis C. Gilmer D. (2000) Adolescents with Special Health Care Needs in Transition: Three Life Histories. Social Work in Health Care 31(4): 43-57. Abstract available.
US multiple case study with three parents of young disabled adolescents.
(25) Hallum A. (1995) Disability and the Transition to Adulthood: Issues for the Disabled Child, the Family, and the Pediatrician. Current Problems in Pediatrics 25(1): 12-50. Abstract available.
US review concentrating on transition issues for severely physically disabled adolescents.
(26) Rettig P. Athreya B.H. (1991) Adolescents with Chronic Disease: Transition to Adult Health Care. Arthritis Care & Research 4(4): 174-180. Abstract available.
US review of the development of a transition programme for adolescents.
(27) Reiss J. Gibson R. (2002) Health Care Transition: Destinations Unknown. Pediatrics 110(6): 1307-1314. Abstract available.
US review of transition policies and preliminary results from a qualitative study involving the use of focus groups.
(28) Department of Health (2003) Getting the right start: National Service Framework for Children, Young People and Maternity Services - Emerging Findings.
UK central government publication.
(29) Department of Health: National Service Framework - Children. External Working Group on Disabled Children (undated) Transition Task Group - Outline Paper. Full text available
UK central government publication.
(30) Madge S. Bryon M. (2002) A Model for Transition from Pediatric to Adult Care in Cystic Fibrosis. Journal of Pediatric Nursing 17(4): 283-288. Abstract available.
UK transition model for cystic fibrosis and a qualitative survey of 21 teenagers.
(31) Konsler G.K. Jones G.R. (1993) Transition Issues for Survivors of Childhood Cancer and their Healthcare Providers. Cancer Practice 1(4): 319-324. Abstract available.
US review of transition models for adolescent cancer survivors.
(32) Orr D.P. Fineberg N.S. Gray D.L. (1996) Glycemic Control and Transfer of Health Care Among Adolescents with Insulin Dependent Diabetes Mellitus. Journal of Adolescent Health 18(1): 44-47. Full text available
US study of 82 adolescents with diabetes tested for glycemic control up to one year after service transfer.
(33) Pacaud D. McConnell B. Huot C. Aebi C. Yale J.-F. (1996) Transition from Pediatric Care to Adult Care for Insulin-Dependent Diabetes Patients. Canadian Journal of Diabetes Care 20(4): 14-20.
Canadian questionnaire study (135 replies).
(34) Sawyer S.M. Collins N. Bryan D. Brown D. Hope M.A. Bowes G. (1998) Young people with spina bifida: Transfer from paediatric to adult health care. Journal of Paediatrics and Child Health 34(5): 414-417. Abstract available.
Australian pilot programme for ten adolescents with spina bifida who were interviewed before and after service transfer.
(35) Volta C. Luppino M.E. Street M.E. Bernasconi S. (2003) Transition from pediatric to adult care of children with chronic endocrine diseases: A survey on the current modalities in Italy. Journal of Endocrinological Investigation 26(2): 157-162. Abstract available.
Italian questionnaire survey of 74 Italian centres for chronic endocrine disease.
(36) Geenen S.J. Powers L.E. Sells W. (2003) Understanding the Role of Health Care Providers During the Transition of Adolescents With Disabilities and Special health Care Needs. Journal of Adolescent Health 32(3): 225-233. Full text available
US questionnaire survey of 753 parents of adolescents with disabilities and 141 health care providers on provider involvement in transition.
(37) Furney K.S. Hasazi S.B. Destefano L. (1997) Transition Policies, Practices, and Promises: Lessons from Three States. Exceptional Children 63(3): 343-355. Full text available
US qualitative study involving semi-structured interviews with 74 policy makers and implementers with cross-case analysis.
(38) Sanci L.A. Coffey C.M.M. Veit F.C.M. Carr-Gregg M. Patton G.C. Day N. Bowes G. (2000) Evaluation of the effectiveness of an educational intervention for general practitioners in adolescent health care: randomised controlled trial. British Medical Journal 320: 224-229. Full text available
Australian randomised controlled trial of 108 GP's receiving an education programme on adolescent health with follow-up at 7 and 13 months.
(39) Irvine T. (2004). Transitional care for young people with inflammatory bowel disease. Gastrointestinal Nursing, 2 (8), 25-28.
This article describes the programme of transitional care for adolescents with inflammatory bowel disease.
(40) Por J., Golberg B., Lennox V., Burr P., Barrow J., Dennard L. (2004). Transition of care: health care professionals’ view. Journal of Nursing Management, 12 (5), 354-361.
This small scale study explores the views and needs of health care professionals regarding transition of care for adolescents with chronic illness. Abstract available
(41) Maunder E. Z. (2004). The challenge of transitional care for young people with life-limiting illness. British Journal of Nursing, 13 (10), 594-596.
This article looks at the provision of transitional planning for young people with cancer. Abstract available
(42) Soanes C., Timmons S. (2004). Improving transition: a qualitative study examining the attitudes of young people with chronic illness transferring to adult care. Journal of Child Health Care, 8 (2), 102-112.
This study explores the attitudes of young people with chronic illness facing transition. Abstract available
(43) Miles K., Edwards S., Clapson M. (2004). Transition from paediatric to adult services: experiences of HIV-positive adolescents. Journal of Nursing Management, 12 (5), 354-361.
This small scale study explores the experiences of HIV-positive adolescents in their transition from child to adult services. Abstract available
(44) Shaw K.L., Southwood T.R., McDonagh J.E., British Paediatric Rheumatology Group (2004). User perspectives of transitional care for adolescents with juvenile idiopathic arthritis. Rheumatology, 43 (6), 770-778.
This study examines how the transitional needs of this group may be addressed and planned for. Full text available
(45) Ko B., McEnery G. (2004). The needs of physically disabled young people during transition to adult services. Child: Care, Health and Development, 30 (4), 317-323.
This study describes the needs of and provision of services to a cohort of school-leavers with physical disabilities involved in transition from children’s to adults services. Abstract available
(46) Tan M.J., Klimach V.J. (2004). Portfolio of health advice for young people with disabilities transferring to adult care. Child: Care, Health and Development, 30 (3), 291-296.
This study evaluates the views of disabled children and their parents about the usefulness of a health portfolio for aiding the transition from children’s to adults services. Abstract available
(47) Timmons J.C., Whitney-Thomas J., McIntyre J.P., Butterworth J., Allen D. (2004). Managing service delivery systems and the role of parents during their children’s transitions. Journal of Rehabilitation, 70 (2), 19-26.
This article reports on a study investigating the transition-related experiences of 30 parents of young adults with disabilities. Full text available
(48) Corrick H. (2000). Easing the pain of transition. Community Care, 28 September.
This article reports a case study and describes a project to improve transition between children’s and adults’ services. Full text available
(49) O'Sullivan T. (2003). MCH 13-24: The transition of young adults with disability: A study of the effectiveness of inter-agency transitional planning. London, Department of Health.
This report describes the complexity of need in the population of disabled school leavers, explores the implications for inter-agency transition planning, and investigates transition planning for disabled school leavers transferring to adults' services.