The burdens, coping strategies, and unmet needs of family caregivers of Chinese patients with lymphoma receiving commercial CAR-T-cell therapy: A qualitative study

TL;DR

This study explores the challenges and coping strategies of family caregivers in China for lymphoma patients undergoing CAR-T-cell therapy, highlighting the need for better support systems.

Contribution

The study provides new insights into the caregiving experiences and unmet needs of family caregivers in the context of commercial CAR-T-cell therapy in China.

Findings

Caregivers face overwhelming burdens including financial strain, emotional distress, and role conflict.

Coping strategies include emotional suppression and reprioritizing personal life for patient care.

Unmet needs include lack of systemic support, education, and emotional care for caregivers.

Abstract

This study aimed to describe the caregiving experiences, coping strategies, and unmet health care needs of family caregivers supporting Chinese patients with large B-cell lymphoma receiving commercial chimeric antigen receptor T-cell therapy.

A qualitative descriptive design was adopted. Semistructured interviews were conducted with 19 primary family caregivers at a university-affiliated cancer centre in southern China. Data were analysed using Braun and Clarke's thematic analysis framework.

Three themes were identified: (1) overwhelming caregiving burden, including financial strain, emotional distress, and role conflict; (2) caregivers' patient-centred coping strategies, including familial financial sacrifice, emotional suppression to protect the patient, and reprioritizing work and personal life for care; and (3) unmet caregiver support needs, including navigating therapy costs without systemic support, gaps in caregiver education and care coordination, and caregivers' emotional support being overlooked in care systems.

Family caregivers of patients receiving this therapy in China experience significant challenges, which are often managed through culturally influenced coping strategies amid limited formal support. A caregiver-inclusive approach (including financial reforms, tailored caregiver education, increased care coordination, and psychosocial services) is essential to support the well-being of family caregivers and optimize treatment outcomes amid evolving oncology trends in China.