Can you spare 100 days? The allogeneic hematopoietic cell transplant caregiver requirement from the perspective of social workers.

Abstract

Purpose: A caregiver is generally required for a patient to proceed with allogeneic hematopoietic cell transplantation (alloHCT). If continuous caregiver support is not available, alloHCT will likely not be a treatment option. A qualitative study design was used to explore caregiver requirements from the perspectives of social workers (SWs). Secondary objectives included learning about requirement flexibility, barriers, and ideas to support patients and caregivers.

Methods: Semi-structured web-based focus groups were conducted with alloHCT SWs who worked with adults at the United States (U.S.) transplant centers (TCs) from May to July 2022. Focus groups explored TC caregiver requirements, including flexibility and exceptions, origins, and barriers.

Results: Twenty-two SWs from TCs across the U.S. participated. All noted their TC required a caregiver to proceed to alloHCT, though there was variation in the length of time a caregiver was required and the distance needed to stay near the TC post-alloHCT. Most participants described differences within the transplant team in allowing exceptions to caregiver requirements. SWs described barriers including finances and patients needing to relocate closer to the TC.

Conclusion: SWs reported variation in caregiver requirements across TCs. Though variation may allow for some flexibility, it may contribute to access barriers. Additional research is needed to identify essential requirements for safe post-transplant care and monitoring and to develop patient-centered models to help patients access life-saving treatment.