The Experience of Spouses as Informal Caregivers for Recipients of Hematopoietic Stem Cell Transplants

Abstract

Spouses often are the primary caregiver for the hematopoietic stem cell transplant (HSCT) recipients and participate in the transplant recipients' care throughout the HSCT trajectory. The purpose of this qualitative study was to explore and describe the experiences of spouses of HSCT recipients during the acute phase of the transplant trajectory. The participants were spousal caregivers (8 wives and 3 husbands) of transplant recipients. Each participant was interviewed 1 to 6 times. Data were analyzed using Spradley's domain analysis. As couples entered the transplant experience, spouses described a sense of dislocation from normal life. They were now riding a rollercoaster in the dark as they lived the uncertainty of this risky therapy. Spouses structured the uncertainty with rituals, formed a positive perspective, and envisioned the future. They described a caregiving role but also needed to balance "me and my world" with "us and our world."

The Caregiver’s Role Across the Bone Marrow Transplantation Trajectory

“…19 n Caregiver Roles Caregivers reported juggling multiple roles, which were categorized and labeled as ''interpreter,'' ''organizer,'' and ''clinician.'' Similar results were found by Wilson and colleagues, 3 who found that the caregiver role often evolved from simply being at the spouse's side to providing emotional support and physical care during the BMT hospitalization. We also noted that the demands of the caregiver role were complicated by the need to ''be strong for everyone'' and often resulted in the caregivers having difficulty in ''finding balance'' in their lives.…”

“…14 However, few studies have qualitatively explored the specific challenges of the transplant experience from the perspective of the caregiver, 3,15 and researchers have identified the need for more research to understand the quality of life of caregivers of cancer patients. 16 Stetz and colleagues 15 were among the first researchers to qualitatively explore the needs of caregivers of BMT recipients during treatment.…”

“…Caregivers, therefore, are playing an ever-increasing role in the care of their partner across the BMT trajectory. 3 Although researchers have demonstrated that committed partner/spouse caregivers are ''willing to do whatever it takes'' to care for their loved ones, 4 little is known regarding the specific problems caregivers face across the BMT trajectory.…”

Family members’ life situation and experiences of different caring organisations during allogeneic haematopoietic stem cells transplantation-A qualitative study

“…This made it difficult to make plans-both in the short time and for the future, earlier described (Sabo et al, 2013, Wilson et al, 2009. The uncertainty that arises along the HSCT-trajectory and its effect on the family members has been reported to give a poorer life satisfaction .…”

“…", "will the treatment succeed" or "will my partner survive?" Family members have earlier described the HSCT as "riding a roller-coaster in the dark" (Wilson et al, 2009).…”