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Providing Care to a Hematopoietic CELL Transplant Recipient: Caregivers Describe Their Own Quality of Life
Methods: As part of a larger qualitative study examining patient education regarding post-transplant QOL, caregivers of patients who had received HCT one to four years previously were recruited. Participants attended one of four caregiver-only focus groups. Caregivers were asked to describe their own QOL after the transplant, how their QOL differed from what they expected before the transplant, the most important things they did to improve their QOL, and how to best educate future HCT caregivers. Verbatim transcripts were coded for a priori and emergent themes using content analysis.
Results: A total of 15 caregivers participated (67% female, mean age 57, range 25-65). A major theme was caregivers’ feelings of helplessness and guilt about their inability to ease patients’ physical and emotional suffering. Caregivers also emphasized the challenges of caring for the patient while taking on many of the patient’s previous responsibilities at home. Many caregivers also struggled with the demands of raising children and working while caregiving. Another major theme was ambivalence about leaving the house; caregivers reported feelings of liberation but also guilt and worry about leaving the patient at home. Regarding coping, caregivers reported deriving benefit from religion and spirituality, social support, and activities that helped them maintain their own sense of identity. Participants described a desire for more caregiver support programs at the transplant center as well as informal networks of other HCT caregivers in their community.
Conclusions: Findings underscore the emotional and physical challenges of caring for a HCT recipient. Additional efforts are needed to facilitate psychosocial support addressing caregivers’ unique concerns.
Funding: Miles for Moffitt Milestone Award (PI: Jim), NCI K07 CA138499 (PI: Jim)
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