EXPERIENCES OF YOUNG ADULTS WITH PEDIATRIC LIFE THREATENING CONDITIONS TRANSITIONING FROM PEDIATRIC TO ADULT SERVICES: A CASE STUDY

Abstract

<p>ABSTRACT</p> <p>Introduction</p> <p>A new group of medically fragile young adults with conditions such as Duchenne’s Muscular Dystrophy (DMD) is graduating from pediatric palliative care programs with limited expectations to live beyond early adulthood, and there are very limited comparable adult health and social services to support their complex needs. When these young adults leave supportive pediatric services, they are poorly served by adult services that are not prepared to accommodate to their needs. Accessing this population is difficult because of the complexity of the individuals’ conditions, their limited mobility to travel and commit to specific interview times, and divergent communication abilities due to weakness, that lead to the use of computer mediated voice recognition, typing or speech.</p> <p>Purpose</p> <p>This case study is among the first research articles to describe the experiences of young adults with pediatric life threatening conditions (pedLTC) who have transitioned from pediatric to adult services. Further, to engage this population of medically fragile participants in the research process, an innovative online data collection method, a bulletin board focus group (BBFG), was utilized.</p> <p>Methods</p> <p>A descriptive single case study design with embedded units was selected to examine the complexity of the transition process for young adults with pedLTC. Face-to-face interviews or bulletin board focus groups were conducted with 10 young adults with pedLTC and 4 expert consultants. Reviews of six documents were also conducted. Conventional and directed qualitative content analysis was conducted on the interview transcripts and documents; and the existing literature and clinical expert opinions were used to triangulate, develop and confirm final interpretations.</p> <p>Results</p> <p>After nearly a decade of effort toward implementing programs, protocols and policies to improve transition from pediatric to adult care, very limited progress in new services has been made. Current resources in the adult health, education, and social service systems are inadequate to meet the needs of young adults with pedLTC. Some of the participants in this study demonstrated a striking capacity to navigate through system barriers, whereas others “got stuck” and were delayed and thwarted from pursuing their ambitions. Bulletin board focus groups facilitated an innovative means to reach medically fragile populations and offered creative and richly contextual data.</p> <p>Conclusions</p> <p>System resources are imperative to provide the necessary resources such as counselling and mental health services, support for educational and vocational opportunities, development of community programs, and socioeconomic improvement. Connectedness across levels of practice and policy, and education, health and social systems is important to create synergistic effects of intervention. Young adult hospice programs can provide the resilience lifelines required to counter the risks associated with declining health, and decreasing support from health, social and educational services to support young adults with pedLTC to pursue their ambitions.</p>