QUALITY OF LIFE AND BURDEN OF CARE IN PRIMARY FAMILY CAREGIVERS OF PEOPLE WITH CHRONIC MENTAL ILLNESS: A STUDY FROM SOUTH-WESTERN NIGERIA

Abstract

Background: Majority of the people who care for persons affected by mental illness are family members, who also have to combine this with taking care of their own immediate family and personal needs. This role places a significant emotional stresses, psychological disturbances, burden of care on the caregivers and subsequently affecting their quality of life negatively. Despite this important role, family carers frequently feels undervalued and unengaged by the health care system and their needs are often neglected. Therefore, identifying the burden of care on relatives of the mentally ill people remains an integral part of research in community mental health services. Methodology: The study was a cross-sectional study based on probabilistic simple random sampling of patients with chronic mental illness and their primary caregivers (n = 429) using psychiatric case register from the hospital. Self-administered questionnaires were used in the study. A pro-forma was used to collect information on the caregivers' socio-demographic characteristics and some patient clinical characteristics. Burden of care was assessed by Zarit's Caregiver Burden Scale (ZCBS), while caregivers' Quality of life was assessed by short version of the World Health Organization Quality of life instrument (WHOQOL-0REF). Results: Out of the 429 primary caregivers that participated in the study, 39.9% experienced high-burden of care. The mean score on ZCBS was 21.11 (S.D. 20.0) with the median score of I 6. The raw scores on the overall quality of life and general health were 4.04 (S.D. 0.79) and 3.86 (S.D. respectively). Less than half of the primary caregivers reported having poor subjective quality of life in all the four domains (physical, 14.7%; psychological, 17.5%; social, 15.4% and environment, J 8.2%). Majority of the primary caregivers were females (52.3%), mostly parents (51.5%) and siblings (23.6%). The mean age of the primary caregivers was 45.78 (S.D. 12.95) and the greater majority fell in the productive age group. High percentage of the respondents had financial assistance (69.5%), helpers (80.9%) and intention to continuing caring (95.3%) for their sick loved ones. About two-third (69.5%) of the caregivers were worried and felt more concerned about high cost of treatment. The predictors of the level of burden were availability of helper, number of previous psychiatric hospital admission, caregiver's perception of the patient functioning and scores on environment quality of life domain. Overall, the predictors of the caregiver's quality of life (all the four domains) were caregivers' perception of patient functioning capacity and their scores on Zarit's Caregiver Burden Scale (ZCBS). Conclusion: With high level of burden of care, relatively poor quality of life and significant association between burden of care and quality of life, there is greater need for strengthening mental health advocacy in Nigeria and implementation of strategies to improve support and training services for carers need to be developed. Also procedure should be put in place whereby "unknown" carers can be identified and brought into the system so that their needs can be assessed and necessary support and education provided.