ArticleInternational journal for equity in health2024
Understanding caregiver burden and quality of life in Kerala's primary palliative care program: a mixed methods study from caregivers and providers' perspectives.
Article in International journal for equity in health, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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6 citing papers in PubMed.
- Exploring Satisfaction and Support Needs of Informal Home Caregivers Using Palliative Care Services: A Mixed-Methods Study from Rwanda.Rwanda journal of medicine and health sciences · 2026Article
- The moderating role of care duration in the relationship between caregiving competence and burden among family caregivers in hospice care.Frontiers in public health · 2026Article
- Factors influencing caregiver burden and its prevalence level amongst family caregivers of patients with palliative care needs and serious illnesses.BMC palliative care · 2025Article
- Impact of Interventions From a Secondary Home-Based Palliative Care Unit on Caregiver Burden in Kerala, India.Cureus · 2025Article
- Impact of care guilt on the health status of female medical staff: a cross-sectional study.International journal for equity in health · 2025Article
- A Qualitative Exploration of Caregiving in Advanced Dementia: Caregiver Perspectives on Unmet Needs in Low- and Middle-income Setting.Indian journal of palliative careArticle
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Abstract
backgroundFamily caregivers are vital for long-term care for persons with serious health-related suffering in Kerala. Long-term caregiving and ageing may become burdensome and detrimental to patients and caregivers. We compared the caregiver burden and quality-of-life of ageing caregivers with younger caregivers. We also explored the palliative care nurses' perceptions of the family caregivers' issues.
methodsWe did a mixed method study focusing on two groups: (i) three in-depth interviews and a cross-sectional survey among 221 caregivers of palliative care patients in five randomly selected panchayats (most peripheral tier of three-tier local self-government system in India concerned with governance of a village or small town) of Kollam district, Kerala, as part of development and validation of the Achutha Menon Centre Caregiver Burden Inventory; (ii) five in-depth interviews with purposively selected primary palliative care nurses as part of a study on local governments and palliative care. We used a structured interview schedule to collect cross-sectional data on sociodemographic and caregiving-related characteristics, caregiver burden, and health-related quality of life using the EuroQol EQ5D5L and interview guidelines on caregiver issues tailored based on participant type for qualitative interviews.
resultsOlder caregivers comprised 28.1% of the sample and had significantly poorer health and quality-of-life attributes. More senior caregivers experiencing caregiver burden had the lowest mean scores of 0.877 (Standard deviation (SD 0.066, 95% confidence intervals (CI) 0.854-0.899) followed by younger caregivers with high burden (0.926, SD 0.090, 95% CI 0.907-0.945), older caregivers with low burden (0.935, SD 0.058, 95% CI 0.912-0.958) and younger caregivers with low burden (0.980, SD 0.041, 95% CI 0.970-0.990). Caregivers faced physical, psychological, social, and financial issues, leading to a caregiver burden. The relationships between the palliative care nurses and family caregivers were complex, and nurses perceived caregiver burden, but there were no specific interventions to address this.
conclusionIn our study from Kollam, Kerala, three out of ten caregivers of palliative care patients were 60 years of age or older. They had significantly lower health-related quality of life, particularly if they perceived caregiver burden. Despite being recognized by palliative care nurses, caregiver issues were not systematically addressed. Further research and suitable interventions must be developed to target such problems in the palliative care programme in Kerala.
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