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 (rho = 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.