Transitions to adulthood for disabled young people: literature review

A literature review, commissioned by the Scottish Government, of existing Scottish, UK and International evidence on the experiences faced by disabled young people during their transition to adulthood. The review also explores best practice in supporting disabled young people during this time.


References

Ambresin, A. et al., 2013. Assessment of youth-friendly health care: a systematic review of indicators drawn from young people's perspectives. Journal of Adolescent Health, 52(6), pp. 670-681.

ARC Scotland, 2017b. Principles of Good Transitions 3.

ARC Scotland, 2017. Facing the Future Together.

ARC Scotland, 2018. Leading the change: Recommendations and actions from a national seminar on improving transitions for young.
Asenova, D., Bailey, S. & McCann, C., 2013. Managing the risks of Public Spending Cuts In Scotland, s.l.: Joseph Rowntree Foundation.

Baer, R. et al., 2011. Students with intellectual disabilities: Predictors of transition outcomes. Career Development for Exceptional Individuals, Volume 34, pp. 132-141.

Baines, J., 2009. Promoting better care: transition from child to adult services. Nursing Standard, 23(19), pp. 35-40.

Bambara, L., Wilson, B. & McKenzie, M., 2007. Transition and quality of life. In: S. Odom, R. Horner, M. Snell & J. Blacher, eds. Handbook of developmental disabilities. New York: Guildford, pp. 371-289.

Baxter, K., Glendinning, C. & Clarke, S., 2008. Making informed choices in social care: the importance of accessible information. Health and Social Care in the Community, 16(2), pp. 197-207.

Beresford, B., 2004. On the road to nowhere? Young disabled people and transition. Child: Care, Health and Development, Volume 30, pp. 581-587.

Bindels‐de Heus, K. et al., 2013. Transferring young people with profound intellectual and multiple disabilities from pediatric to adult medical care: parents' experiences and recommendations. Intellectual & Developmental Disabilities, Volume 51, pp. 176-189.

Boehm, T., Carter, E. & Taylor, J., 2015. Family Quality of Life During the Transition to Adulthood for Individuals With Intellectual Disability and/or Autism Spectrum Disorders. American journal on intellectual and developmental disabilities., Volume 120, pp. 395-411.

Boger, E. et al., 2015. Self-Management and Self-Management Support Outcomes: A Systematic Review and Mixed Research Synthesis of Stakeholder Views. PloS one, 10(7).

Butterworth, S. et al., 2016. Transitioning care-leavers with mental health needs: 'they set you up to fail!'. Child and Adolescent Mental Health, 22(3), pp. 138-147.

Cabinet Office, 2005. Improving the life chances for disabled people, London: Prime Minister's strategy unit.

Cameron, A., Lart, R., Bostock, L. & Coomber, C., 2014. Factors that promote and hinder joint and integrated working between health and social care services: A review of research literature.. Health and Social Care in the Community, 22(3), pp. 225-233.

Campbell, F. et al., 2016. Transition of care for adolescents from paediatric services to adult health services. Cochrane Database Systematic Reviews.

CanChild, n.d. The transition to adulthood for youth with physical disabilities: A qualitative exploration.

Carers UK, 2019. State of Caring: A snapshot of unpaid care in the UK.

Carter, E., Austin, D. & Trainor, A., 2012. Predictors of postschool employment outcomes for young adults with severe disabilities. Journal of Disability Policy Studies, Volume 23, pp. 50-63.

Carter, E., Brock, M. & Trainor, A., 2014. Transition Assessment and planning for Youth with Severe Intellectual and Developmental Disabilities. Journal of Special Education, Volume 47, pp. 245-255.

CELCIS; Children in Scotland; Care Inspectorate, 2018. Integrating Health and Social Care in Scotland: The Impact on Children's Services. A Review of the Literature, Report, 1.

Chamberlain, M. & Kent, R., 2005. The needs of young people with disabilities in transition from paediatric to adult services. Europa Medicophysica, 41(2), pp. 111-123.

Chaudhary, S., Keaton, M. & Nasr, S., 2013. Evaluation of a cystic fibrosis transition program from pediatric to adult care. Pediatric Pulmonology, Volume 48, pp. 658-665.

Cheseldine, S., 2010. Issues of Transition for Young People with Learning Disabilities Plus Other Complex Needs, Edinburgh: Joint Improvement Team.

Colver, A. et al., 2018b. How well do services for young people with long term conditions deliver features proposed to improve transition?. BMC health services research, 18(1), pp. 1-10.

Colver, A. et al., 2018. How well do services for young people with long term conditions deliver features proposed to improve transition?. BMC health services research, 18(1), pp. 1-10.

Colver, A. et al., 2019. Facilitating the transition of young people with long-term conditions through health services from childhood to adulthood: the Transition research programme. Programme Grants for Applied Research, 7(4).

Cook, A. & Miller, E., 2012. Talking Points Personal Outcomes Approach: Practical Guide, Edinburgh: Joint Improvement Team.

Cooper, M., Evans, Y. & Pybis, J., 2016. Interagency collaboration in children and young people's mental health: A systematic review of outcomes, facilitating factors and inhibiting factors. Child: Care, Health and Development, 42(3), pp. 325-342.

Cross-Party Group on Autism, 2020. The accountability gap: A review of.
de Silva, P. & Fishman, L., 2014. Transition of the patient with IBD from pediatric toadult care—an assessment of current evidence. Inflammatory Bowel Diseases, 20(8), pp. 1458-1464.

Di Rezze, B. et al., 2016. A scoping review of evaluated interventions addressing developmental transitions for youth with mental health disorders. Child: care, health and development, 42(2), pp. 176-187.

DIVErgent INfluencers, 2021. Hear Our Voices, Respect Our Choices.

Doug, M. et al., 2011. Transition to adult services for children and young people with palliative care needs: a systematic review. Arch Dis Child, 96(1), pp. 78-84.

Education Scotland, n.d. What are additional support needs?.
[Accessed 23 June 2022].

European Network on Independent Living, n.d. European Network on Independent Living: Definitions.

Fegran, L. et al., 2014. Adolescents' and young adults' transition experiences when transferring from paediatric to adult care: a qualitative metasynthesis. International Journal of Nursing Studies, Volume 51, pp. 123-135.

Fisher, M. & Elnitsky, C., 2012. Health and social services integration: A review of concepts and models. Social Work in Public Health, 27(5), pp. 441-468.

Flexer, R. & Baer, R., 2008. Transition planning and promising practices. In: R. Flexer, R. Baer, P. Luft & T. Simmons, eds. Transition planning for secondary students with disabilities. Upper Saddle River: Pearson Education, pp. 3-28.

Francis, T., 2006. Life on the Edge of the Cliff: Post school experiences of young people with Asperger's Syndrome, ADHD and Tourette's Syndrome.

Fraser of Allander Institute, 2021. Improving transitions to adulthood [Podcast] EP39.

Fraser of Allander Institute, 2021. Invisible no more: Recommendations to build evidence-based effective.

Frost, N., 2017. Multi-disciplinary work with children and young people: Process and outcomes. In: The Routledge Handbook of Global Child Welfare. s.l.:Taylor & Francis, pp. 326-344.

Gorter, J. et al., 2014. Pathways toward positive psychosocial outcomes and mental health for youth with disabilities: a knowledge synthesis of developmental trajectories. Canadian Journal of Community Mental Health, Volume 33, pp. 45-61.

Grady, P. & Gough, L., 2014. Self-management: a comprehensive approach to management of chronic conditions. American journal of public health, 104(8), pp. 25-31.

Greene, G. (., 2009. Best practices in transition. In: C. Kochhar-Bryant & G. Greene, eds. Pathways to successful transition for youth with disabilities: A developmental process. Upper Saddle River: Pearson Education, pp. 196-235.

Health and Social Care Alliance Scotland, 2017. Experiences of Transitions to Adult Years and Adult Services.

Helgeson, V. et al., 2013. Characterizing the transition from paediatric to adult care among emerging adults with Type 1 diabetes. Diabetic Medicine, Volume 30, pp. 610-615.

Henninger, N. & Taylor, J., 2014. Family Perspectives on a Successful Transition to Adulthood for Individuals With Disabilities. Intellect Dev Disabil, 52(2), pp. 98-111.

Heslop, P., Mallett, R., Simons, K. & Ward, L., 2002. Bridging the divide at transition: what happens for young people with learning difficulties and their families?, s.l.: British Institute of Learning Disabilities.

Jacobs, P., MacMahon, K. & Quayle, E., 2020. Who decides? – transitions from school to adult services for and with young people with severe intellectual disabilities. Disability & Society, 35(7), pp. 1058-1084.

Jaquet, S., 2015. Evaluation of the Scottish Transitions Forum, Glasgow: Starthclyde University.

Jindal-Snape, D. et al., 2019. Multiple and multidimensional life transitions in the context of life-limiting health conditions: longitudinal study focussing on perspectives of young adults, families and professionals. BMC palliative care, 18(1), pp. 1-12.

Kennedy, A. & Sawyer, S., 2008. Transition from pediatric to adult services: Are we getting it right?. Current Opinion in Pediatrics, 20(4), pp. 403-409.

Ko, B. & McEnery, G., 2004. The needs of physically disabled young people during transition to adult services. Child: Care, Health and Development, 30(4), pp. 317-323.

Leonard, H., Foley, K. & Pikora, T., 2016. Transition to adulthood for young people with intellectual disability: the experiences of their families. European Child & Adolescent Psychiatry, pp. 1369-1381.

Lewis, S. & Noyes, J., 2013. Effective process or dangerous precipice: Qualitative comparative embedded case study with young people with epilepsy and their parents during transition from children's to adult services. BMC Pediatrics, 13(1), p. 169.

Lindsay, S., Kingsnorth, S., Mcdougall, C. & Keating, H., 2014. A systematic review of self-management interventions for children and youth with physical disabilities. Disability and Rehabilitation, 36(4), pp. 276-288.

Lugasi, T., Achille, M. & Stevenson, M., 2011. Patients' perspective on factors that facilitate transition from child-centered to adult-centered health care: a theory integrated metasummary of quantitative and qualitative studies. Journal of Adolescent Health, 48(5), pp. 429-440.

Maslow, G. et al., 2011. Growing up with a chronic illness: social success, educational/vocational distress. Journal of Adolescent Health, Volume 49, pp. 206-212.

Mason, A., Goddard, M., Weatherly, H. & Chalkley, M., 2015. Integrating Funds for Health and Social Care: An Evidence Review. Journal of Health Services Research and Policy, 20(3), pp. 177-188.

McBride, E. & McDicken, A., 2012. Facilitating the transition from child to adult services for young people with profound and multiple learning disabilities.

McConachie, H., Hoole, S. & LeCouteur, A., 2011. Improving mental health transitions for young people with autism spectrum disorder. Child: Care, Health and Development, Volume 37, pp. 764-766.

Miceli, M., 2008. The associations among youth characteristics,secondary school experiences, and enrollment in two- and four-year colleges among youth with disabilities, Baltimore: University of Maryland.

Mitchell, F., 2012. Self-directed support and disabled young people in transition. Journal of Integrated Care, 20(4), pp. 223-230.

Nathenson, R. & Zablotsky, B., 2017. The Transition to the Adult Health Care System Among Youths With Autism Spectrum Disorder. Psychiatric Services, 68(7), pp. 735-738.

National Institute for Health and Care Excellence (NICE), 2016. Transition from children's to adults' services for young people using health or social care service.

NDTI, 2011. Pathways to Getting a Life: transition planning for full lives.

NICE, 2016. Transition from children's to adults' services for young people using health or social care services.
Papay, C. & Bambara, L., 2014. Best Practices in Transition to Adult Life for Youth With Intellectual Disabilities. Career Development and Transition for Exceptional Individuals, Volume 3, pp. 136-148.

Paul, M. et al., 2013. Transfers and transitions between child and adult mental health services. Br J Psychiatry Suppl, Volume 53, pp. 36-40.

Paul, M. et al., 2013. Transfers and transitions between child and adult mental health services. The British Journal of Psychiatry, Volume 202, pp. 36-40.

Price, C. et al., 2011. Implementing a transition pathway in diabetes: a qualitative study of the experiences and suggestions of young people with diabetes. Child: Care, Health and Development, Volume 37, pp. 852-860.

Robertson, H., 2011. Integration of health and social care: A review of literature and models. Implications for Scotland. , Edinburgh: Royal College of Nursing in Scotland.

SCCYP, 2013. It always comes down to Money: Recent changes in service provision to disabled children, young people and their families in Scotland, s.l.: Strathclyde University .

SCIE, 2013. Promoting the Quality of Life Of Looked-After Children and Young People.

SCIE, 2017. Building independence through planning for transition: A quick guide for practitioners supporting young people.

SCIE, 2019. Preparing for adulthood: The role of social workers.

SCLD, 2017. Improving outcomes for people with learning disabilities: Opportunities and challenges for housing.

Scottish Government, 2013. The Keys to Life: Improving quality of life for people with learning disabilities.

Scottish Government, 2014. 2013, Implementation of The Education (Additional Support for Learning) (Scotland) Act 2004: report to Parliament.
[Accessed April].

Scottish Government, 2017. Young people's experience of education and training from 15-24 years: A Report to the Scottish Government.

Scottish Government, 2018. Coming Home: A Report on Out-of-Area Placements and Delayed Discharge for People with Learning Disabilities and Complex Needs.

Scottish Parliament, 2020. Summary of Consultation Responses: Proposed Disabled Children and Young People (Transitions) (Scotland) Bill.

Sebastian, S. et al., 2012. The requirements and barriers to successful transition of adolescents with inflammatory bowel disease: differing perceptions from a survey of adult and paediatric gastroenterologists. Journal of Crohn's & Colitis, Volume 6, pp. 830-844.

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), pp. 102-112.

Social Work Scotland, 2018. Integrating Health and Social Care in Scotland: The Impact on Children's Services.

SPICe, 2019. Transitions of young people with service and care needs between child and adult services in Scotland: SPICe Briefing.

Stalker, K. et al., 2013. It Always Comes Down to Money: Recent changes in service provision to disabled children, young people and their families in Scotland, Edinburgh: Scotland's Commissioner for Children.

Stalker, K. & Moscardini, L., 2012. A critical review and analysis of current research and policy relating to disabled children and young people in Scotland: A report to Scotland's Commissioner for Children and Young People.

Stephen, J., Lerpiniere, J., Young, E. & Welch, V., 2015. Integrating Health and Social Care in Scotland: Potential impact on children's services. Report Two: Study Findings, s.l.: CELCIS & Children in Scotland.

Stewart, D., 2009. Transition to adult services for young people with disabilities: Current evidence to guide future research. Developmental Medicine and Child Neurology, 51(4), pp. 169-173.

Stewart, D. et al., 2010. The transition to adulthood for youth with disabilities: evidence from the literature. In: J. Stone & M. Blouin, eds. International Encyclopedia of Rehabilitation. s.l.:Center for International Rehabilitation Research Information and Exchange.

Stewart, D. et al., 2006. A critical appraisal of literature reviews about the transition to adulthood for youth with disabilities. Physical & Occupational Therapy in Pediatrics, Volume 26, pp. 5-24.

Talking Mats, 2015. Will anyone listen to us? What matters to young people with complex and exceptional health needs and their families.

Taylor, N., Fauset, A. & Harpin, V., 2010. Young adults with ADHD: An analysis of their service needs on transfer to adult services. Archives of Disease in Childhood, 95(7), pp. 513-517.

Test, D. et al., 2009. Evidence-based secondary transition predictors for improving postschool outcomes for students with disabilities. Career Development for Exceptional Individuals, Volume 32, pp. 160-181.

Van Staa, A. & Sattoe, J., 2014. Young adults' experiences and satisfaction with the transfer of care. Journal of Adolescent Health, Volume 55, pp. 796-803.

van Staa, A. et al., 2011. Readiness to transfer to adult care of adolescents with chronic conditions: exploration of associated factors. Journal of Adolescent Health , Volume 48, p. 295–302.

Viner, R., 2008. Transition of care from paediatric to adult services: One part of improved health services for adolescent. Archives of Disease in Childhood, 93(2), pp. 160-163.

Wehman, P., 2006. Applications for youth with intellectual disabilities. In: P. Wehman, ed. Life beyond the classroom: Transition strategies for young people with disabilities. Baltimore: Paul H Brookes, pp. 411-445.

Welch, V. et al., 2012. Do short break and respite services for families with a disabled child in England make a difference to siblings? A qualitative analysis of sibling and parent responses. Children and Youth Services Review, 34(2), pp. 451-459.

Welch, V., Maire McCormack, J. & Lerpiniere, J., 2014. Integrating Health and Social Care in Scotland: Potential impact on children's services. A Review of the Literature, Report, 1.

Young Minds, 2020. Transferring from CAMHS to Adult Mental Health Services.

Zhou, H., Roberts, P., Dhaliwal, S. & Della, P., 2016. Transitioning adolescent and young adults with chronic disease and/ordisabilities from paediatric to adult care services–an integrative review. Journal of Clinical Nursing, Volume 25, p. 3113–3130.

Contact

Email: DCYPTransitions@gov.scot

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