Beyond medication: Understanding child and caregiver perspectives on multifaceted adherence in pediatric hematopoietic stem cell transplantation.
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OBJECTIVES: This qualitative study sought to explore the unique experiences of children receiving hematopoietic stem cell transplant (HCT) and their caregivers, with a primary focus on the multifaceted aspects of adherence following discharge. METHODS: Convenience sampling was used to enroll 14 caregivers and 15 children at a large Midwestern children's hospital. Children had an allogenic HCT for a malignant or nonmalignant disorder and were 1-12 months off immunosuppression. Participants completed a semi-structured interview in the HCT-clinic or via phone about the child's experience taking medications and adhering to post-transplant guidelines. RESULTS: Caregivers were primarily female (n = 13, 87%), White (n = 11, 73%), and not Hispanic (n = 15, 100%). Children were primarily male (n = 9, 60%), White (n = 10, 67%; missing: n = 3), and not Hispanic (n = 13, 87%; missing: n = 2). Children's average age was 13.14 years (SD = 2.88). Two primary themes emerged from the interviews, (1) family navigation and self-management of post-HCT medications and restrictions with 3 subthemes highlighting structured routines, adaptations to life post-HCT, and experiences with daily restrictions and other aspects of care; (2) advice from families on navigating post-HCT care with 2 subthemes highlighting communication and strategies for maneuvering post-HCT treatment. Of note, half of caregivers (n = 7, 50%) reported the child was responsible for taking their medications, and 43% (n = 6) of children were responsible for knowing when to take their medications. SIGNIFICANCE OF RESULTS: This study contributes a nuanced understanding of adherence in pediatric HCT, emphasizing the need for tailored interventions that transcend traditional medical frameworks and enable clear communication between families and the medical team. Findings underscore the importance of providers adopting a comprehensive and patient-centered approach. Healthcare providers should consider the psychosocial aspects of HCT, implement tailored family-centered strategies to optimize adherence, and prioritize comprehensive communication to improve outcomes.