Stem cell transplant (SCT) is a major life event that can have long-term psychosocial consequences for the entire family. It is unknown the degree to which the psychosocial characteristics associated with SCT influence self-management behaviors and health outcomes in adolescents and young adults (AYAs).
The study had the following aims: (1) to describe how AYAs manage their care regimen post-SCT and (2) to explore self-management facilitators, barriers, processes, and behaviors within individual, family, community, and healthcare system domains.
A grounded theory study was conducted to understand the process AYAs use to manage their care after SCT. Semistructured individual interviews were conducted, digitally recorded, and transcribed verbatim. Data were coded to consensus and analyzed using constant comparison methods.
A sample of 17 AYAs (13-25 years old at transplant) and 13 caregivers (dyads) participated in the study. Initially, the participants experienced a tornado of activities, information, and emotions. Support from family, friends, and healthcare providers empowered families to manage their care, maintain a positive attitude, and approach a “normal” life.
Monotony, managing symptoms, and isolation were the hardest obstacles for AYAs throughout the process. Families discussed managing their care activities by developing routines that got easier with time.
Nurses play an instrumental role in AYA self-management practices by providing information, education, and social support. Psychosocial issues were prominent in the self-management process and should be addressed in future research and interventions with AYAs and caregivers.
Author Affiliations: Division of Behavioral Medicine and Clinical Psychology, Center for the Promotion of Adherence and Self-Management, Cincinnati Children’s Hospital Medical Center (Drs Morrison and Pai and Ms Woebkenberg); College of Nursing, University of Cincinnati (Drs Morrison and Martsolf and Mss Wehrkamp, Ramirez, and Tehan); Bone Marrow Transplantation and Immune Deficiency (Mss Borich and Coleman) and Patient and Family Wellness Center (Dr Pai), Cancer and Blood Diseases Institute, Cincinnati Children’s Hospital Medical Center; and Department of Pediatrics, University of Cincinnati School of Medicine (Dr Pai), Ohio.
This project was funded by the DAISY Foundation Research Grant.
The authors have no conflicts of interest to disclose.
Correspondence: Caroline F. Morrison, PhD, RN, College of Nursing, University of Cincinnati, 3110 Vine St, Cincinnati, OH 45221 (firstname.lastname@example.org).
Accepted for publication September 14, 2017.