Psychological impacts and ways of coping reported by spousal caregivers of hematopoietic cell transplant recipients: a qualitative analysis

Abstract Allogeneic hematopoietic cell transplantation (HCT) is a demanding treatment with well-established medical and psychosocial sequelae. Impacts on significant others are tremendous. Using an unfiltered qualitative approach, we asked spouses (N=15) of HCT recipients to talk about their thoughts and feelings regarding the transplant and their role as caregiver. Recordings were transcribed and independently coded to identify recurrent patterns. Caregivers mentioned both negative and positive psychological impacts of HCT, but the number of negative impacts was greater: 164 versus 34 instances. The most frequently mentioned negative psychological impacts were anxiety/ worry (30 instances), fear (20 instances), feeling overloaded/ overwhelmed (19 instances), and uncertainty (17 instances). Other emergent categories were roles/ responsibilities (49 instances) such as parenting, work, and treatment-related tasks; and coping strategies (55 instances). The latter included both adaptive and maladaptive strategies (75% and 25%, respectively). Despite the preponderance of negatively toned thoughts and feelings, signs of adjustment emerged given mention of positive psychological states such as optimism and gratitude, and adaptive coping strategies such as active coping, use of emotional support, and self-care. Interventions intended to facilitate adaptation to the HCT experience should employ strategies to help caregivers manage symptoms of distress and promote adaptive coping.