Experiences and Needs of Caregivers of Adult Patients With Hematologic Malignancies During Treatment: A Qualitative Longitudinal Study.

Abstract

Family caregivers play a vital role in providing care and support for patients with life-threatening hematologic diseases. Extensive patient care needs and long-term treatment trajectories can negatively affect the health of caregivers. Despite the importance of supporting caregivers, few studies examine family caregivers' experiences and support needs during treatment. To explore the role, experiences, and needs of family caregivers of patients with hematologic malignancies during treatment. An exploratory longitudinal qualitative study using serial semistructured interviews with caregivers of hematologic patients was carried out. Data were analyzed using thematic analysis. A sample of 16 caregivers completed 47 interviews. Three themes and 2 subthemes were identified: (1) committing to an unconditional mission while adjusting to a changeable situation: developing resilience over time; (2) being an invisible and inseparable sufferer: cultivating hope one day at a time; and (3) balancing between sacrificing one's own needs and self-care. During treatment, caregivers face long-term psychological and physical distress, social isolation, and loneliness due to the extended life-threatening situation imposing shifting challenges and needs. Future research should explore the concept of social support in caregiver resilience and investigate psychosocial interventions in hematologic caregivers. Healthcare professionals should address caregiver needs throughout the patient's treatment and provide new supportive initiatives to lessen the burden of care in hematologic caregivers. Facilitating peer support and deploying a family-oriented approach considering the patient-caregiver dyad as a subject for care have implications for clinical nursing practice.