"Being alone for a whole year [is hard]" Families reflect on the emotional toll of stem cell transplantation for sickle cell disease.

Objective: Sickle cell disease (SCD) is associated with significant morbidity and mortality. Hematopoietic stem cell transplantation (HCT) can improve health-related quality of life (HRQOL) but may be physically and emotionally challenging. Thus, the aim of this study was to understand the experience of HCT from the perspective of youth and young adults (YYAs) post-HCT for SCD and their parents.

Methods: YYAs were recruited from an urban hospital. Sociodemographic and HCT-specific information was analyzed for all enrolled. YYAs and/or their primary caregivers during HCT, participated in semi-structured interviews (e.g., pre-HCT knowledge, challenges, advice for families/health care providers). Interviews were audio-recorded, transcribed, and analyzed using content analysis.

Results: There were 19 YYAs enrolled (63.2% male; 68.4% Black or African American; 47.4% Hispanic or Latino; M days post-HCT = 1946.53 ± 1329.13; M age at HCT = 10.95 ± 6.10 years old; M current age 15.74 ± 5.78 years old). Interviews were done with six YYAs alone, five YYA-caregiver dyads, and eight caregivers alone. The caregivers were all mothers. Participants reported underestimating the emotional impact HCT would have on themselves and their family members. They experienced challenges related to isolation, academics, finances, and post-HCT medical needs. In contrast, they felt well prepared for physiological aspects of HCT. They sought HCT to improve YYAs' HRQOL and encouraged others to consider it, but to be cognizant of the potential psychosocial impact.

Conclusions: This study highlights the importance of preparing families for the psychosocial effects of HCT. Incorporating psychosocial assessment, education, and intervention throughout HCT has the potential to promote HRQOL for YYAs and their families.