Information needs of young people with cerebral palsy and their families during the transition to adulthood: a scoping review
The transition to adulthood is a developmental phase which occurs as young people move from adolescence into adulthood. Young people with disabilities, including cerebral palsy (CP), and their families have reported challenges during the transition to adulthood because they are required to move to adult supports and services, which are often fragmented and bring about new questions and expectations to find necessary supports. Young people and their parents have been found to lack information about where to find services in adulthood, how to access the services and what to ask during the transitional process. The aim of this scoping review was to explore the information needs of young people with CP and their families during the transition to adulthood. The goal is to map the current published evidence within the transition to adulthood literature base to explore what is known about information needs during the transition to adulthood of young people with CP and their parents. This review seeks to synthesize what is known about information content, timing, methods of provision and delivery. Databases searched were OVID Medline, CINAL, ERIC, EMBASE, PsycINFO, Web of Science, Social Science Abstracts and Sociological Abstracts. Initially 675 articles were retrieved. Four hundred and forty-two articles were selected for title review. Two hundred and five articles remained for abstract review. Seventeen articles were included for full-text review. Eleven articles were included in this review. Data were organized into five themes: (1) identified information needs during the transition to adulthood (content), (2) identified recommended providers of information during the transition to adulthood (who), (3) identified delivery methods of information during the transition to adulthood (how), (4) identified timing of information delivery of information during the transition to adulthood (when) and (5) location of information provided during the transition to adulthood (where). This review found that young people with CP, their families and adult providers all possess information needs during the transition to adulthood. Young people with CP and their families seek information about what adult services will look like and how to access supports. Adult providers require information about CP. Youth with CP prefer individualized information be delivered to them when needed rather than presented in group sessions or via paper handout. Other recommendations included the development of parent support networks to assist parents in the transition to adulthood. The opportunity to learn from real-life experiences was also viewed as an important source of information as well as method to provide information.
Freeman M; Stewart D; Cunningham CE; Gorter JW
Journal of Transition Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1515/jtm-2018-0003" target="_blank" rel="noreferrer noopener">10.1515/jtm-2018-0003</a>
Perspectives on transitions: rethinking services for children and youth with developmental disabilities
Child; Humans; Male; United States; Disability Evaluation; adolescent; Adolescent Transitions; Adolescent Health Services/standards; Developmental Disabilities/rehabilitation; Health Services Needs and Demand/organization & administration
Transition to adulthood for youth with developmental disabilities has become an important concern internationally of service providers working with these young people. Reflecting on the useful review by Binks and colleagues in this issue of the Archives, we argue as developmentalists that this is an ideal time to step back from our traditional preoccupation with "treatment" of childhood disability and to reconsider broadly what our goals for intervention ought to be. We invoke the concepts of the International Classification of Functioning, Health and Disability framework and draw on research that taps the voices of young people with disabilities-voices we believe have a lot to tell us about what has and has not worked for them. We suggest that there are unparalleled opportunities to enhance transition to adulthood for young people with developmental disabilities, in part by a feed-forward of the best of childhood services, and to work to prevent many of the difficulties faced by the current generation making this challenging transition.
2007
Rosenbaum P; Stewart D
Archives Of Physical Medicine And Rehabilitation
2007
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.apmr.2007.06.001" target="_blank" rel="noreferrer">10.1016/j.apmr.2007.06.001</a>
Looking back to move forward: Reflections and lessons learned about transitions to adulthood for youth with disabilities.
Adolescence; Child Development; Disability; Health Services Research; Transition
BACKGROUND: Transition to adulthood is a significant development process experienced by all youth. Since the mid 1990s, researchers at the CanChild Centre for Childhood Disability Research have been studying this process to assist transitioning youth with disabilities and their families. The objective of this narrative review is to reflect on the work conducted by CanChild researchers, in collaboration with stakeholders, about transitions to adulthood for youth and young adults with disabilities since the publication of the best practice guidelines in 2009. METHODS: A narrative review was undertaken through a reflective approach to critically review and summarize all the transition studies completed at CanChild since 2009. The following data were systematically extracted from articles and research reports: study (authors and year of publication), purpose, methods, sample, and lessons learned. RESULTS: Five studies were identified. An analysis of the findings revealed five key themes that represented lessons learned since the publication of the Ontario-based best practice guidelines: promoting a noncategorical and lifecourse approach to care; active collaboration among stakeholders involved in transition; capacity building through peer mentorship; greater understanding of the significance of opportunities and experiences; as well as the significance of information, education, and research. CONCLUSIONS: This is the first review to provide perspective on trends in transition research since the publication of the best practice guidelines in 2009. It is hoped that this reflection will assist in the ongoing work of researchers, service providers, policy makers, communities, and families in the area of adult transitions for youth with disabilities.
Nguyen T; Stewart D; Gorter JW
Child: Care, Health And Development
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1111/cch.12534" target="_blank" rel="noreferrer">10.1111/cch.12534</a>