Transition Stakeholder Alliance Network
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Hello everyone,
The fall is here! Along with the cool weather and falling leaves comes the third edition of the Transition Stakeholder Alliance Network newsletter. You will see by the updates below that many of us have been busy over the summer months. If you would like to see anything new in the next newsletter or have anything to add, please be in touch. We are always happy to further develop the content of these newsletters to keep you up-to-date and further encourage communication and collaboration.
Embrace the sweater weather!
Jan Willem Gorter
, MD, PhD, FRCPC
Director of CanChild, Scotiabank Chair in Child Health Research
McMaster University, McMaster Children's Hospital
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ApplyIT Study - Apply (the app) In Transition
Gorter, JW., Grant, C., Thabane, L., Arora, S., Mondal, T., Don-Wauchope, A., Punthakee, Z., Ronen, G., Breakey, V.
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With Nadilein Mahlberg on maternity leave, we would like to welcome our new Research Coordinator, Kelsey Fish. Kelsey completed her internship with us at CanChild in the summer and has now joined the ApplyIT team. Recruitment for the ApplyIT study ended June 30
th
2018. The ApplyIT study team is now making progress with study visits and fall plans. Out of the 104 participants who had agreed to be in the study during recruitment, 39 participants completed the baseline visit. The team is currently in the process of completing the 3-month and 6-month follow-up study visits (phone calls). To date, we have had one participant withdrawal after the first study visit, leaving 38 participants. Out of the 38 participants, 34 have completed visit 2, and 12 have completed visit 3.
Moving forward, qualitative analysis will be completed. The novel aspect of this study lies in its in-depth examination of self-management promotion from a collaborative perspective. Oksana Hylva has also been hired as a Research Coordinator on the ApplyIT study for the qualitative analysis. We will purposefully sample 10 youth with a range of chronic health conditions, and 10 each of their parents and health care providers (HCPs). Interviews will be done in person or over the phone. This will ensure a triangulation of sources, and allow for feedback on the 'mytransition' app and how to inform a larger RCT. In addition, data entry, cleaning, and analysis will occur in the fall. For more information, please click the link below.
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Child: Care, Health and Development
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
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
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.
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Download the 'mytransition' app!
A new app has been developed to help make transition easier. The
MyTransition
app is designed to prepare patients between the ages of 12 and 18 to begin taking charge of their health care as they approach adulthood. The
MyTransition
app includes tools to describe one’s health condition, raise important health needs in new situations, and measure skills related to managing one’s own health. The app includes the
TRANSITION-Q
; a 14-item scale, the first of its kind, non-disease specific measure of self-management in healthcare for adolescents with chronic health conditions. The app is also used in the ApplyIT Study. Download the app today, free!
Developmental Medicine and Child Neurology journal
June 15
th
to 22
nd
2018: a virtual issue (open access) on
Transition to Adulthood
has been published online in the above journal, with a commentary written by Dr. Jan Willem Gorter.
Click here for the issue
. The virtual issue includes articles published by Peter Rosenbaum, Jan Willlem Gorter and CanChild scientists on this topic.
MARQUEE: Redefining Modern Luxury - Summer 2018
Drs. Jan Willem Gorter (PI) and Christina Grant
(Co-PI) were featured in the article titled MyTransition App: A Success Story (pages 70 to 74). The article describes the app-based toolkit which was designed by McMaster Children’s Hospital to prepare patients between the ages of 12 and 18 to successfully transition from pediatrics to adult care. The article also highlights the ApplyIT Study.
White Coat, Black Art (CBC Radio One)
Dr. Jan Willem Gorter was recorded at the above, during the CAMH Town Hall Meeting, discussing the topic:
"Crisis in Care"
focusing on youth with disabilities transitioning into adulthood and their families. Dr. Gorter has shared his experience working with teenagers and their families and discussed a national strategy for disability support. The air times in Ontario were 1:05 pm on Saturday, June 16 repeating on Sunday, June 17 at 6:30 pm. Click
here
for more information on the shows website.
Transition of Care - Child Neurology Foundation: Share Your Perspective: Parents or caregivers of persons 12-30 years of age living with a complex neurologic condition
Information:
"CNF invites you to participate in the Caregiver Perspectives on Transitions Project — to better understand parent/caregiver perspectives in key aspects of transition to adulthood for those living with complex neurologic conditions which often include intellectual and developmental disabilities. Through online focus groups (conducted earlier this year) and surveys, we are exploring and highlighting medical transitions, as well as transitions related to community-based supports, residential services, and social/recreational supports." Are you a parent or caregiver of an individual age 12-30 years living with a complex neurologic condition who is not expected to live fully independently in adulthood? Click
here
to share your perspectives. Survey ends on October 8
th
.
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McMaster University | 1400 Main Street West, IAHS 408 | Hamilton, Ontario | L8S 1C7 Canada
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