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Young Adult Perspectives on a Successful Transition from Pediatric to Adult Care in Sickle Cell Disease. | LitMetric

Young Adult Perspectives on a Successful Transition from Pediatric to Adult Care in Sickle Cell Disease.

J Hematol Res

Dana-Farber/Boston Children's Cancer and Blood Disorders Center, Boston, MA; Harvard Medical School, Boston, MA.

Published: December 2015

AI Article Synopsis

  • - The study aimed to gather insights from young adults with sickle cell disease (SCD) regarding their experiences transitioning from pediatric to adult healthcare.
  • - Through focus groups with 15 participants, four key themes were identified: facilitators and barriers of transition, desired components of transition programs, and definitions of successful transition.
  • - The findings highlight the need for improved transition programs by incorporating early preparation, better staff knowledge, peer support, and a gradual responsibility for self-management in young adults with SCD.

Article Abstract

Objective: This qualitative study sought to learn from young adults with sickle cell disease (SCD) about their experience leaving pediatric care and perspective on what makes a successful transition.

Methods: Fifteen young adults with SCD who had left pediatric care within the previous five years participated in focus groups led by a trained moderator. Transcripts were analyzed using grounded theory.

Results: Four main themes emerged from the analysis: facilitators of transition (meeting the adult provider prior to transfer, knowing what to expect, gradually taking over disease self-management and starting the process early), barriers to transition (negative perceived attitude of adult staff, lack of SCD specific knowledge by both patients and staff, and competing priorities interfering with transition preparation), what young adults wished for in a transition program (opportunities to meet more staff prior to transfer, more information about the differences between pediatric and adult care, learning from a peer who has been through the process, more SCD teaching, and flexibility in transition preparation) and how they define a successful transition (gradually assuming responsibility for self-management of their SCD).

Conclusion: Our findings present unique opportunities to learn from young adults with SCD about ways to improve current transition programs.

Download full-text PDF

Source
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4862600PMC
http://dx.doi.org/10.12974/2312-5411.2015.02.01.3DOI Listing

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