Up against the System: A Case Study of Young Adult Perspectives Transitioning from Pediatric Palliative Care

Title

Up against the System: A Case Study of Young Adult Perspectives Transitioning from Pediatric Palliative Care

Creator

Cook KA; Siden H; Jack S; Thabane L; Browne G

Identifier

Publisher

Nursing Research And Practice

Date

2013

Description

Advances in pediatric care have not provided the interdisciplinary support services required by those young adults with pediatric life-threatening conditions (pedLTCs) who live beyond childhood but have limited expectations to live past early adulthood. These young adults, the first generation to live into adulthood, face multiple challenges transitioning from a plethora of pediatric palliative services to scant adult health services. In a case study, using an innovative bulletin board focus group, we describe the complex interplay of the health, education, and social service sectors in this transition. Our descriptions include system deficits and strengths and the young adults' resilience and coping strategies to overcome those deficits and move forward with their lives. Young adults with pedLTC need knowledgeable providers, coordinated and accessible services, being respected and valued, and services and supports that promote independence. We recommend implementation of multidisciplinary solutions that are focused on young adult priorities to ensure seamless access to resources to support these young adults' health, educational, vocational, and social goals. The input and voice of young adults in the development of these services are imperative to ensure that multisystem services support their needs and life goals.
2013

Rights

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).

Type

Journal Article

Citation List Month

Backlog

Pages

286751-286751

Volume

2013

Citation

Cook KA; Siden H; Jack S; Thabane L; Browne G, “Up against the System: A Case Study of Young Adult Perspectives Transitioning from Pediatric Palliative Care,” Pediatric Palliative Care Library, accessed October 18, 2021, https://pedpalascnetlibrary.omeka.net/items/show/14695.

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