Publications
The Journal of Transition Medicine
Dr. Jan Willem Gorter and Sophia Zhang-Jiang (BHSc student) have published the following in the above journal: " The use of the Rotterdam Transition Profile: 10 years in review "
Abstract
The aim of this literature review was to describe the use and utility of the Rotterdam Transition Profile (RTP), as we near the tenth year since its publication in 2008. It is a tool to summarize a youth’s transition process to adulthood by classifying various domains of participation and health care into developmental stages. This review provided a comprehensive synthesis of available knowledge on the RTP by summarizing published and grey literature. Using search terms related to transition, social participation, and questionnaire, a systematic search was conducted for literature up to November 2017 in MEDLINE and Embase databases and was supplemented with a hand-search using Google Scholar and a general internet search using Google Search. Inclusion criteria were specified to determine the papers selected for review, yielding fifty-five materials for detailed review. Combined analysis of published and grey literature identified nine papers that used some form of the RTP as a measure, eighteen materials that cited the RTP or its domains but did not employ it as a measure, and twenty-eight materials that cited the original RTP development and validation paper for information not directly related to the RTP. The literature demonstrated that the RTP seems to be a useful tool to describe and monitor the transition process of adolescents and young adults, in both research and clinical settings. While it has been used with youth of 14 to 31 years of age across genders and health conditions, more evidence is needed to demonstrate its psychometric properties beyond construct validity in young adults with cerebral palsy.
Child: Care, Health and Development
Matt Freeman , PhD candidate at CanChild/ School of Rehabilitation Science ( Supervisor: Jan Willem Gorter) and colleagues published the following title: “ If I had been given that information back then”: An interpretive description exploring the information needs of adults with cerebral palsy looking back on their transition to adulthood."
Abstract
Background: Young people with cerebral palsy (CP) and their families have identified lack of information received during the transition to adulthood as a barrier to successful outcomes. To date, few studies have explored the information needs, preferences, timing, and method of provision from the perspective of individuals with CP. Method: The methodological approach to this qualitative study was interpretive description. Nine adults living with CP, between the ages of 20 and 40, were purposively recruited in Ontario, Canada, to explore, retrospectively, their information needs during the transition to adulthood. Participants completed a 1‐hour interview that explored their experiences seeking and receiving information. Interviews were transcribed verbatim, and data were analysed to create a thematic description of adults' experiences with information. Results: Three themes emerged: (a) “Recognizing and supporting information needs,” which highlighted the importance of support systems to assist young people in receiving and seeking information throughout the transition; (b) “Getting creative,” which highlighted strategies young people use when confronted with environmental barriers when seeking information; and (c) “Gaps and advice for the future,” which highlighted the need for real‐life opportunities, during the transition to adulthood, to experience some of the responsibilities of adult life. Conclusion: Clinicians assisting young people with CP need purposefully to foster knowledge and skills during the transition to adulthood. They should be not only providers of information but also enablers of opportunities for immersion in real‐life experiences to prepare for adult life. It is important for young people to have the opportunity to discuss challenges and exchange information with their peers.
Journal of Transition Medicine
Matt Freeman , PhD candidate at CanChild/ School of Rehabilitation Science ( Supervisor: Jan Willem Gorter) and colleagues published the following title: "Information needs of young people with cerebral palsy and their families during the transition to adulthood: a scoping review."
Abstract:
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.
BMJ Open
Jan Willem Gorter and colleagues published the following title: "Protocol for a scoping review about ethics in transition programmes for adolescents and young adults with neurodisabilities."
Abstract:
Introduction: As adolescents with neurodisabilities near adulthood, they and their caregivers will face the challenge of transferring from paediatric to adult healthcare systems. Despite the growing number of programmes designed to support healthcare transitions, little is known about practices that result in positive outcomes or how ethical issues are addressed. The objective of this review is to identify and document the ethical principles that may be embedded in the vision of transitional care programmes and to map ethical issues encountered in transitional care as well as the strategies employed to recognise and address these ethical issues. Method and analysis: We will document hidden and explicit ethical principles and issues from empirical studies on transition programmes for youth with neurodisabilities. An initial framework developed through a content extraction strategy will serve as a point of departure for data analysis and will be iteratively refined through our analytic process and with feedback from our stakeholders, including youth with neurodisabilities and their families. Findings will then be shared in different formats with health and social services professionals, healthcare decision and policymakers. Dissemination: Scoping review results will be shared at key conferences and disseminated in peer-reviewed publications as well as plain language summaries with stakeholders and the general public. Opportunities will be sought to discuss this project and its preliminary findings with partners in the paediatric, adult healthcare and rehabilitation communities comprising young people with neurodisabilities, their families, clinicians, programme managers and researchers.