Short summary

This study examines caregivers' experiences with patients suffering late effects post-allogeneic hematopoietic stem cell transplantation (allo-HSCT). A qualitative design with individual interviews employing a hermeneutic approach was used. Caregivers were recruited from a Danish hematological outpatient department specializing in allo-HSCT. Semi-structured interviews were recorded with participant consent. Data will be analyzed using NVivo software and systematic text condensation.

Rationale

Allo-HSCT, a potential cure for chemotherapy-resistant hematological diseases, was performed 19,806 times in Europe in 2021 (Gyurkocza et al., 2010; Passweg et al., 2023). The recovery process, lasting months to years, involves late effects like graft versus host disease, significantly impacting recipients' daily lives with physical, psychological, and psychosocial disorders (Gyurkocza et al., 2010; Stein et al., 2008). These individuals experience deteriorated health, increased need for health services, and diminished quality of life (Treanor et al., 2013). Caregivers, usually partners or spouses, offer crucial support throughout treatment and recovery, often neglecting their own needs (El-Jawahri et al., 2020; Winterling et al., 2022; Sabo et al., 2013; Bergkvist et al., 2020). Research highlights the significant impact on caregivers' QoL, with caregivers facing more distress and higher PTSD rates than recipients (El-Jawahri et al., 2020; Bergkvist et al., 2020). However, limited qualitative research exists on caregivers' experiences and coping mechanisms one year or more post-allo-HSCT, despite its importance for providing appropriate support.

Description of the cohort

Caregivers were recruited by doctors and nurses working in the department. Caregivers who were ³ 18 years, able to speak Danish, and living with a partner with late effects one year or more after allo-HSCT, were eligible for the study.

Data and biological material

Semi-structured interviews were conducted from February 2023 to June 2024. The analysis is ongoing.

Collaborating researchers and departments

Department of Oncology, Odense University Hospital

• Professor Karin B. Dieperink

Department of Haematology, Odense University Hospital, Denmark

• Sissel K. Saabye

Family focused healthcare research Center (FaCe), University of Southern Denmark

• Professor Karin B. Dieperink