Understanding caregiver burden and quality of life in Kerala's primary palliative care program: a mixed methods study from caregivers and providers' perspectives.

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.

Navigating the Caregiving Pathway: Understanding the Contextual Influences on Sense of Coherence Among Family Caregivers.

INTRODUCTION: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Methodological challenges in studying the chronically ill elderly: Ethical need to include caregivers.

In low- and middle-income countries, caring for the elderly is a responsibility that is undertaken within households with minimal institutional support from the community or structural support from the state [1,2]. Usually, this responsibility is shared within the home, with the physical and emotional work of caring falling to the one who does not have too many extra-residential responsibilities. The gendered nature of caring responsibility is such that, usually it is women who are not in the formal or informal labour markets who share the responsibility [2,3].

Factors Associated with Screening Positive for Depression among Women Caregivers of Primary Palliative Care Patients in Kerala, India.

Background: The study encompasses findings from a prospective quantitative screening of women family caregivers for depression as part of a larger mixed methods study designed to develop and validate a caregiver burden inventory for the home-based palliative care programme in Kerala, India. Aim: We assessed the proportion of women caregivers screening positive for depression and explored the associated factors. Methods: The Primary care Screening Questionnaire for Depression (PSQ4D) was used to screen participants for depression. Other variables analysed were caregiver and patient related factors, stresses, strains, support received, caregiver burden and quality of life domain variables as per the EuroQol EQ-5D-5L instrument. Results: Forty women (20.0%, 95% Confidence Intervals [CI] 14.46% - 25.54%) screened positive for depression on the PSQ4D. This was more likely if the care recipient was the spouse, if the care recipient had cancer, if the caregiver perceived a moderate or high physical/psychological burden, or a high financial burden. Pain/ discomfort when included had an adjusted odds ratio (AOR) of 8.2 (95% CI 2.6-26.0) and tended to decrease the AOR of all other significantly associated variables, except cancer diagnosis in the care recipient. Conclusion: Depression levels among women caregivers in primary palliative care settings in Kerala seem comparable to prevalence levels among women in the general population. Those caregivers reporting pain/ discomfort should be screened for depression using simple locally validated measures. Depression is associated with higher caregiver burden and poorer quality of life. Screening and treatment of depression may help mitigate these situations.

Caregiver Burden among Informal Caregivers in the Kerala Palliative Care Program: Development and Validation of the Achutha Menon Centre-Caregiver Burden Inventory.

Background: Family caregivers of bedridden or homebound patients are at risk of adverse physical and psychological outcomes. There is a need for a culturally adapted and valid instrument for measuring caregiver burden in palliative care programs. Objective: To develop a reliable and valid instrument to measure the self-perceived burden of informal caregivers of patients with serious health-related suffering. Design/Setting: "Caregiver burden" was conceptualized based on literature review and in-depth interviews. Content validity assessment, cognitive interviews, and a cross-sectional survey were used to develop and validate the instrument. The study was set within the primary palliative care program in Kerala, India. Subjects: Ten palliative care professionals and 10 caregivers were engaged for the content validity assessment and cognitive interviews, respectively. The cross-sectional survey was conducted among 221 (males = 21) family caregivers in Kollam district, Kerala. The Institutional Ethics Committee of the Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum reviewed and cleared the study. Measurements: Underlying factors were identified by using principal axis factoring. The corresponding sub-scales and a composite scale were tested for internal consistency, construct validity, reproducibility, floor and ceiling effects, and interpretability. Results: Two factors that explained 29.5% of the variance were extracted. Two sub-scales-consequences of caregiving and lack of financial security-were derived. The final nine-item Likert-type Achutha Menon Centre-Caregiver Burden Inventory (AMC-CBI) had a content validity index of 0.77, Cronbach's alpha of 0.82, and high test-retest reliability (ρ = 0.87, p < 0.001). Conclusion: The AMC-CBI is a valid and reliable instrument for burden assessment of caregivers of patients served by the home-based palliative care program in Kerala, India.