Adolescents and young adults who experience hematopoietic stem cell transplant are at risk for self-management difficulties based on development, psychological comorbidities, and the complexity of the care regimen. Recommendations for practice change were designed to address facilitators and barriers to self-management for adolescents and young adults following hematopoietic stem cell transplant. As part of a grounded theory research study, 30 participants (17 adolescents and young adults and 13 of their caregivers) were individually interviewed and asked about facilitators and barriers to managing care and advice for health care providers. Participant responses were coded into categories, which were named with terms used by the participants. The number of participants who provided data per category was recorded. Self-management is generally characterized only in the ability to follow a prescribed care regimen. Participants indicated mental and emotional experiences as a result of treatment were indistinguishable from self-management activities. Facilitators included having a positive attitude, social support, organization, motivation, and information. Barriers included physical and psychological symptoms, isolation, difficulties with the medication regimen, single parenting, and having a bad attitude. Advice for health care providers included communicating effectively, treating patients holistically, and providing social support.
Randomized clinical trial of therapeutic music video intervention for resilience outcomes in adolescents/young adults undergoing hematopoietic stem cell transplant: A report from the Children's Oncology Group