%0 Journal Article
%T Up against the System: A Case Study of Young Adult Perspectives Transitioning from Pediatric Palliative Care
%A Karen Cook
%A Harold Siden
%A Susan Jack
%A Lehana Thabane
%A Gina Browne
%J Nursing Research and Practice
%D 2013
%I Hindawi Publishing Corporation
%R 10.1155/2013/286751
%X 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. 1. Introduction A life-threatening condition adds complexity to the challenging period between childhood and adulthood and the needs and experiences of young adults are specific and different from children¡¯s and adults needs [1]. Unfortunately, advances in pediatric care have not provided the interdisciplinary support services required by those young adults with pediatric life-threatening conditions (pedLTC) who live beyond childhood but have limited expectations to live past early adulthood [2¨C4]. These young adults, who are the first generation with pedLTC to live into adulthood, face a multitude of challenges transitioning from the plethora of pediatric services to scant adult health services [5] and are vulnerable to a significant deterioration in health status and even increased mortality once they leave pediatric care [3, 6]. While the number of young adults with pedLTC is small, the numbers continue to rise [7]. In the United Kingdom, the number of 16¨C19-year olds living with life-threatening conditions nearly doubled in a decade [1]. To date, there is a paucity of research about the transition experiences of youth ¡°aging out¡± of pediatric palliative care [3]. Palliative care is an interdisciplinary approach to the management of
%U http://www.hindawi.com/journals/nrp/2013/286751/