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Background Family 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. Methods We 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. Results Older 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. Conclusion In 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.

Family caregivers of patients with chronic conditions face challenges such as emotional and physical stress, which can lead to caregiver burden. A good sense of coherence (SOC) is crucial in promoting resilience, positive health outcomes, and coping. Caregivers with a high SOC are optimistic about their caregiving roles and finding meaning and purpose in their responsibilities. In this background, we looked into the contextual influences that facilitate or impede the sense of coherence of the family caregivers of patients with chronic conditions requiring home-based long-term care. We conducted telephonic interviews with 10 self-identified primary family caregivers of patients with chronic conditions. We utilized semi-structured interview guidelines, transcribed the interviews verbatim, and performed thematic analysis. Potential factors influencing caregivers' SOC were identified through inductive coding, allowing themes to emerge from the data. However, we report themes along the three components of SOC. Good knowledge about the disease conditions, open communication with care recipients and providers, and past caregiving experiences all contribute to improving comprehensibility. Insufficient knowledge about the condition could be distressing. Effective management requires adapting care strategies through learning, planning, and utilizing available resources, and support networks, too, play a crucial role. However, insufficient caregiver support and neglecting one's health can result in distress and disruptions in care management. Maintaining positive perspectives and ascribed values to interpersonal connections can enhance meaningfulness among caregivers. These interpretations may not apply to caregivers with affective disorders. Various aspects influence the comprehensibility, manageability, and meaningfulness pertaining to the situation of family caregivers, and these in turn impact their well-being and ability to provide quality care. Understanding these factors can help create support systems with targeted interventions and strategies to reduce caregiver burden and improve quality of life.