Pediatric Hematopoietic Stem Cell Transplant Medication Adherence Facilitators and Strategies: A Qualitative Study

Abstract Objective Taking medications as prescribed after hematopoietic stem cell transplant (HCT) is key for ensuring children’s survival; however, suboptimal medication adherence is common. Development of evidence-based interventions to improve medication adherence post-HCT is contingent upon understanding what adherence facilitators (i.e., unique traits, characteristics, or resources inherent to the individual, medical treatment, or healthcare team) and strategies (i.e., tools caregivers or medical providers intentionally use) promote medication adherence in this population. Therefore, this study examined caregiver-perceived medication facilitators post-HCT. Methods Semi-structured qualitative interviews and demographic questionnaires were completed by 29 caregivers of children (≤12 years) who had received an HCT within the past 2 years. Results Thematic analysis guided by grounded theory revealed 14 saturated themes that were grouped into 4 categories: family facilitators, medication facilitators, caregiver strategies, and multidisciplinary treatment team strategies. Conclusions Overall, findings suggest that caregivers of children who received an HCT are highly resourceful and independently develop many strategies to assist them with medication management after their child’s HCT. These facilitators and strategies varied between caregivers and over time. Despite prevalent facilitators and strategies, caregiver burden associated with medication adherence remains high. Caregivers may benefit from the multidisciplinary treatment team providing individualized and multicomponent (educational and behavioral) medication adherence supports to ease this burden particularly shortly after hospital discharge.