Family Caregivers’ Experiences of Hospital at Home Following Allogeneic Haematopoietic Stem Cell Transplantation: A Qualitative Study

Abstract

Purpose: The use of Hospital at Home (HaH) is expanding globally, including in the context of allogeneic haematopoietic stem cell transplantation (HSCT), as an innovative care model that delivers hospital-equivalent care to patients in a home setting. The HaH model designed for HSCT relies on informal caregivers, such as next of kin or friends. Given the limited research on caregivers’ perceptions of HaH, this study aimed to explore how informal caregivers of patients undergoing HSCT experienced HaH.

Method: Using a phenomenological interpretive approach, semistructured individual interviews were conducted with 14 family caregivers. Data were analysed using reflexive thematic analysis.

Results: The analysis identified three themes: (1) On the inside as a caregiver, (2) Variation in caregiver burden and (3) Appreciating normality. Caregivers valued the opportunity to be physically present and involved in caring for the patient during HSCT. Although most had to undertake an active caregiving role, they reported varying levels of involvement and distress. Caregivers also highlighted the sensation of normality that HaH fostered, emphasising that maintaining a familiar routine in the home setting was less exhausting than traditional hospital care.

Conclusion: This study found that family caregivers appreciated being physically present in HaH, experiencing a sensation of being ‘on the inside’ and closely sharing the patient’s treatment journey, in contrast to during hospitalisation. The findings revealed diverse experiences of caregiving and associated distress, underscoring the importance of adequately preparing caregivers for their role and ensuring appropriate support.