The experience of caring for a spouse undergoing hematopoietic stem cell transplantation: Opening Pandora's Box

Background: Hematopoietic stem cell transplantation (HSCT) is a major treatment option for patients with hematological malignancies. Spouses are frequently asked to provide physical, psychological, and emotional support in both the acute care and outpatient settings, yet few studies have explored the nature and implications of their caring work beyond the acute care phase. Objective: The aims of this exploratory study were to (1) highlight the effect of caregiving on the psychosocial health and well-being of spouses of HSCT recipients; (2) highlight the level of caregiver burden, depression, and/or secondary trauma experienced by spousal caregivers of HSCT recipients; and (3) identify when spouses are most vulnerable to caregiver burden, depression, and/or secondary trauma. METHOD/METHODOLOGICAL APPROACH:: A mixed-method exploratory study was undertaken. Participants were followed over 1 year from immediately before transplantation to 1 year after transplantation. Descriptive statistics and thematic analysis highlighted the effect of spousal caregiving on psychosocial health and well-being. Results: Eleven spouses participated in the study. Caregivers experienced caregiver burden, psychological distress (depression), and risk for secondary traumatic stress at 3 points in time over 1 year from before transplantation to 1 year after transplantation. Conclusions: Findings suggest that spouses may be at risk for adverse psychological effects as a result of their role in providing care for a partner undergoing HSCT. Implications for Practice: Nurses need to integrate regular psychosocial assessments of caregivers to recognize the early signs of distress and intervene to support and promote psychosocial health and well-being.