The unseen burden of CTCL caregiving.

Abstract

e19059 Background: Cutaneous T-cell lymphoma (CTCL) patients rely heavily on informal caregivers for complex psychosocial and medical support. While crucial for patient outcomes, these caregivers face unique psychological challenges balancing care responsibilities with their own emotional needs. This study explores how CTCL caregivers navigate the expectations of caregiving while managing their own psychological well-being. Methods: We conducted in-depth interviews using an internally standardized questionnaire with (N=16) CTCL patients and caregivers at a comprehensive cancer center. Interviews were transcribed verbatim and analyzed through thematic analysis using MAXQDA software to identify recurring patterns in caregiving experiences, with particular attention to caregivers' emotional experiences and their interactions with healthcare systems. The study was approved by the Emory University institutional review board (IRB #00008367). Results: Analysis of caregiver interviews revealed a pattern of progressive psychological isolation driven by both internal and institutional factors. Caregivers described three interconnected forms of silencing: (1) Suppressed depression - caregivers consistently prioritized projecting strength over acknowledging their own emotional needs; (2) Systemic Invisibility - caregivers reported feeling overlooked within healthcare settings despite their consistent presence and integral role in patient care; (3) Protective isolation - caregivers deliberately withdrew from support systems and minimized their own struggles to maintain an optimistic environment for their loved ones, ultimately creating a cycle of increasing isolation and emotional burden. Conclusions: This study reveals a complex dynamic where caregivers' dedication to creating a supportive environment for CTCL patients often comes at the cost of their own psychological well-being. Healthcare institutions should consider developing supportive resources that respect both patient privacy and caregiver needs through: 1) Creating accessible educational materials and resource directories for caregiver self-care and support services; 2) Establishing voluntary caregiver support groups within cancer care settings; and 3) Building partnerships with community mental health organizations that specialize in supporting caregivers. While these findings came from the CTCL setting, they may represent universal challenges faced by caregivers across oncology, suggesting broad applicability for developing feasible and privacy-compliant caregiver support programs.