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2025 ; 24
(1
): 267
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Palliative care conditions managed at home and self-reported challenges
experienced by informal home-based caregivers in Rwanda: a qualitative study
#MMPMID41131522
Twahirwa JC
; Mukeshimana M
; Fitch M
; Katende G
BMC Palliat Care
2025[Oct]; 24
(1
): 267
PMID41131522
show ga
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.
|*Caregivers/psychology/statistics & numerical data
[MESH]