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

• Published in: Journal of palliative medicine Vol. 24; no. 8; p. 1197
• Main Authors: Kochuvilayil, Arsha, Varma, Ravi Prasad
• Format: Journal Article
• Language: English
• Published: United States 01.08.2021
• Subjects: Caregiver Burden; Caregivers; Cross-Sectional Studies; Female; Humans; Male; Palliative Care; Psychometrics; Reproducibility of Results; Surveys and Questionnaires; home-based palliative care; validity; caregiver burden; scale development; reliability
• ISSN: 1557-7740
• DOI: 10.1089/jpm.2020.0477

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. To develop a reliable and valid instrument to measure the self-perceived burden of informal caregivers of patients with serious health-related suffering. "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. 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. 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. 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 (  = 0.87,  < 0.001). 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.