Exploring the Transition Experience from Pediatric to Adult Healthcare
Systems from the Perspective of Individuals with Disabilities: Project Description
Amy Thomas, PT
University of North Carolina at Chapel Hill
DPT Capstone Project 2021
BACKGROUND INFORMATION:
As a home-based pediatric physical therapist (PT), I became interested in what is involved during transitioning from child-centered to adult-centered systems of healthcare for youth with special healthcare needs (YSHCN) and their families. While researching this topic, I discovered an abundance of resources and policies exist surrounding the issue of healthcare transitioning (HCT). However, there is sparse, in-depth information available about whether or not processes are successfully being implemented or how YSHCN and families themselves have experienced or are experiencing transitions. HCT has long been discussed in terms of policy-making, system infrastructures, training of healthcare professionals, timing and implementation, and attitudes of stakeholders. Yet still the process can be confusing and unsuccessful; the literature indicates transition preparedness remains inadequate and healthcare needs of YSHCN are consistently not being met once they no longer qualify for pediatric services. I invite PTs, as well as other healthcare professionals, to understand not only how transition processes may or may not be working but also to consider what specific roles they might play in promoting smooth HCTs that result in satisfactory, lifelong healthcare provision, self-determination, and quality of life for the vast majority of adults living with chronic health conditions that began in infancy or childhood.
CLINICAL QUESTIONS:
1) What is the overall experience of YSHCN and their families during HCT from pediatric to adult-centered systems of healthcare?
2) What specific roles might PTs play to assist YSHCN and their families to successfully transition into adult-centered healthcare systems?
STEPS TAKEN:
1) To begin my exploration of the topic of HCT for YSHCN, I created a voicethread, as a final project, for a module of a University of North Carolina at Chapel Hill Doctorate of PT course (PHYT 820) for which I was the Teacher’s Assistant in the Summer of 2020. The link to this voicethread is:
https://unc.voicethread.com/share/15002350/
2) Using 3 databases (i.e., PubMed, Cochrane Library, and Embase) I performed an extensive literature search and review. I ultimately focused on 19 articles which are referenced here:
AThomas_Evidence Table and References
3) I developed a combination questionnaire/consent form for 2 volunteer participant recruits to complete. Questions were informed by those on the National Survey of Children with Special Health Care Needs (NS-CSHCN) and wording adjusted to address health literacy. The questionnaire was sent via participants’ preferred methods (i.e., one through the U.S. Postal Service and the other as an e-mail attachment). The questionnaire used and feedback form are accessible here:
AThomas_Capstone Questionnaire and Consents
4) I analyzed the questionnaires completed by 2 adults with cerebral palsy who went through the HCT process as young adults then followed up with them, individually, via interviews conducted on a secure on-line platform.
5) I wrote and submitted 2 different articles, both entitled ‘Roles of Physical Therapists in Healthcare Transitions’, to:
a) a University of North Carolina at Chapel Hill, Department of Allied Health Sciences newsletter. The original draft form of this article was accepted for posting, however, it has since been revised and resubmitted. The final article may be accessed here:
b) the ‘Viewpoints’ section of the American Physical Therapy Association (APTA) Magazine. This article may be accessed here:
FUTURE DIRECTIONS:
1) I have submitted a request to the University of North Carolina at Chapel Hill Independent Review Board, Office of Human Research Ethics, to pursue authoring a research article expanding upon my ‘Clinical Questions’.
2) The APTA Magazine editor has agreed to collaborate with me on future projects related to issues of HCT for YSHCN.
3) One of my professional goals involves proposing development of a Combined Sections Meeting (CSM) panel of the APTA to explore how PTs can be involved in helping clients successfully transition from pediatric to adult healthcare systems.
ACKNOWLEDGEMENTS:
Deborah Thorpe, PT, PhD for mentoring me, providing advice throughout my PHYT 820 teaching experience, and her availability during the development of this Capstone project.
Laurie Ray, PT, PhD for her support, counsel and excellent recommendations while in her role of Faculty Advisor. I also thank Dr. Ray for ‘reeling me in’ when my project threatened to become too large.
Susan Attermeier, PT, PhD for her suggestions and feedback about the questionnaire and articles created for this Capstone project, as well as for her enthusiastic endorsement of future directions to take it, while in her role of Committee Member.
Charles Sheets, PT, OCS, SCS, Dip MDT, MS Analytics for agreeing to step in as a Committee Member and his solid feedback about the structure and content of articles created for this Capstone project.
Donald E. Tepper, MA, Editor, Lead Editor/Writer for APTA Magazine for his interest in my topic, willingness to accept my article submission, and eagerness to collaborate on future projects.
Volunteer participants for their interest and generous time spent completing questionnaires and interviews which yielded invaluable information for this Capstone project, as well as those to be pursued in the future.
5 Responses to “Exploring the Transition Experience from Pediatric to Adult Healthcare Systems from the Perspective of Individuals with Chronic Conditions Arising in Childhood”
Laurie Ray
A remarkable amount of work, Amy! I think you not only identified key research in HCT, you enriched it with your experience and conveyed it to 3 different audiences effectively. You took on a large project and were able to complete it in a meaningful expression to impact your colleagues. Well done! I look forward to hearing the ‘ripple’ effects from your project.
Laurie Ray
Me again…where is your self reflection? I’d love to see that.
Debbie Thorpe
Hi Amy
This turned out to be a great project!! The voice thread is evidence-based and provides very good information related to transition for YSHCN. I think Katie Ollendick, DPT (who will be taking over the 820 module for me) would really consider using it to supplement her materials. With your permission, I would like to offer it to her? You evidence table was comprehensive . I love your advocacy piece with the authorship of an article for a local and national newsletter to advocate for transition services for YSHCN! It was a pleasure working with you and watching you gain new skills in designing the voice thread and writing the articles. All the entry-level students gained from your expertise! Good luck in the future!
Best
Debbie
Rachel Sledge
Hi Amy,
Thank you so much for highlighting the importance of successful transitions to adult health care services for YSHCN. I remember researching and writing posts for this module in PHYT 820 and realizing that I had not given much thought to how these transitions happen and the amount of thoughtful attention that is needed to make the process go smoothly. In one of our pediatrics courses, parents of children with disabilities were invited to be part of a discussion panel to share their experiences navigating the health care system. I remember one parent using the expression of “it felt like falling off a cliff” to describe her family’s experience with transitioning from pediatric to adult services. Clearly, we as PTs and health care providers in general need to be doing much more to support families going through this transition. Thank you for bringing attention to this issue to the larger allied health audience and including actionable steps that we can take to make this process more successful for YSHCN!
Madison Bell
Amy,
Thank you so much for shedding light into this topic that needs increased awareness and perspective. Your passion for this population is evident and your products reflect that in quite an impressive manner. As someone interested in pediatrics, this project was very useful for me to have moving forward in my future clinical practice with patients transitioning out of pediatric care. As you mentioned, a smooth transition to continued care in adulthood is pertinent for maintaining a high quality of life and decreasing long-term negative health outcomes. I especially appreciated your clinical examples specific to PTs and how we can play an extremely important role in making appropriate referrals and even getting involved in policy-making. Thank you again for your hard work that will make a difference in the YSHCN population. It’s been a pleasure learning with and from you this past year! Take care!