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Exploring Satisfaction and Support Needs of Informal Home Caregivers Using Palliative Care Services: A Mixed-Methods
Jean Claude Twahirwa1,2, Marg Fitch3, Godfrey Katende4
1School of Nursing and Midwifery, College of Medicine and Health Sciences, University of Rwanda, Kigali, Rwanda.
Background:
Informal home-based caregivers play a key role in supporting patients with life-limiting illnesses in Rwanda, often assuming primary responsibility for daily palliative care. Despite the sense of purpose caregiving may bring, it is frequently accompanied by emotional, physical, and financial strain that affects caregivers' well-being. However, limited evidence exists regarding their satisfaction with palliative care services and their unmet support needs.
Objective:
This study aimed at exploring the support needs and satisfaction levels of informal home-based caregivers regarding palliative health services in Rwanda.
Methods:
A mixed-methods study design, involving twenty (20) informal home-based caregivers for the qualitative approach was employed. One hundred sixty-one (161) informal caregivers were recruited for the quantitative approach. The data was conducted in two districts of Nyamasheke and Rusizi in Rwanda. Descriptive statistics were performed on the quantitative data while structured thematic analysis was used for the qualitative data.
Results:
The results revealed that informal home-based caregivers experienced significant emotional, physical, and financial strain due to inadequate training and limited support. Feelings of burnout, loss of personal time, and dissatisfaction with the caring roles as well as palliative care services were reported. Informal home-based caregivers needed better training, financial aid, and consistent medical support.
Conclusion:
Training and support systems for informal home-based caregivers' satisfaction are key facets to palliative care services. Palliative policy and programmatic reforms are needed to address these issues for enhanced palliative care services in Rwanda.
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