Palliative care conditions managed at home and self-reported challenges experienced by informal home-based caregivers in Rwanda: a qualitative study.

Abstract

Introduction: A greater dependency on informal home-based caregivers to assist patients in their homes stems from Rwanda's rising palliative care needs and the burden of terminal illnesses. These caregivers play a critical role in addressing patients' physical and emotional needs and assisting with daily activities. However, in low-resource settings like Rwanda, limited attention has been given to understanding their lived experiences and the challenges they face. This study primarily aimed to explore the lived experiences and caregiving challenges of informal home-based caregivers providing palliative care. A secondary aim was to describe the range of life-threatening conditions being managed at home under their care.

Methods: A qualitative descriptive study design was used to gain in-depth insights into the common palliative conditions managed at home, the caregiving practices employed, and the challenges experienced by informal caregivers. Twenty (20) participants were purposively selected from Nyamasheke and Rusizi districts in Rwanda, all of whom were providing home-based care to terminally ill patients. Data were collected through in-depth individual interviews and analyzed thematically using open coding in Atlas.ti software.

Results: Informal home-based Caregivers managed an assortment of chronic and life-threatening illnesses, assuming challenging responsibilities like medication administration, wound care, mobility assistance, and emotional support. Analysis revealed a hierarchy of interrelated themes reflecting the multifaceted challenges of caregiving. These included Caregiver Burden, Financial and Material Constraints, and Structural and Systemic Challenges, each underscoring the intense physical, emotional, and logistical demands Informal home-based caregivers faced. Additional themes such as the Lived Experience of Illness, Coping Mechanisms, and Community and Informal Support highlighted how caregivers navigated these pressures, often with limited guidance or resources. Finally, the theme of Recommendations for Support emerged, offering insight into potential interventions to better assist caregivers. These themes were consistent across caregiving contexts, regardless of the specific illness involved.

Conclusion: Unspecified wound cancer with multiple chronic diseases and advanced illnesses together with hypertension and stroke complications are among the major palliative conditions reported and managed at home. Informal home-based caregivers face substantial responsibilities and numerous challenges during the provision of palliative care at home. Caregiving in this context remains undervalued and under-supported. There is an urgent need for targeted support systems and policy reforms to strengthen home based caregiver to improve the quality of life of home-based caregivers in Rwanda.