Exploring Caregiver Burden of Care Experiences in Caring for Mentally Ill Patients Living With Hiv/aids at Kenyatta National Hospital, Comprehensive Care Center.

Abstract

Background HIV/AIDS is an epidemic with severe Psychiatric and Mental Health implications; it predisposes an individual to mental disorders and psycho-social torture because of living with a life threatening incurable disease. Caregiving is the primary help and assistance given to a person in need and Caregiver burden is the Psychosocial, Physical and Financial hardships experienced when caring for a family member struggling with chronic illness. Such caregivers develop caregiver burden when the stress of care exceeds the resources/manpower available to cope with the demand of care. The aim of the study was to explore caregiver experiences and burden of care when looking after Mentally ill persons living with HIV/AIDs. Methodology This was a qualitative study that utilized interview guide to collect data during in-depth interviews from primary caregivers of persons living with HIV/AIDs and Mental Illness. Purposive sampling technique was used to target rich sources of data. Primary caregivers of persons living with HIV/AIDs with mental illness comorbid were identified because of their lived experience of caregiver burden. Data were collected for three weeks between June 2018 and July 2018. Qualitative data analysis was used to capture the subjective experiences obtained through in-depth interview. The data was documented through audio recordings then transcribed and analyzed using NVIVO software Results One hundred percent of caregivers reported a high objective burden whereas severity of illness correlated with burden and quality of life. Greater objective burden altered family programs and interactions due to looking after relatives living with HIV/AIDs and Mental Illness comorbidity led to significantly poorer quality of life in all domains of the caregiver. Caregivers to persons living with HIV/AIDs and mental illness went through various challenges in the course of giving care. Financial constraints and psychological distress were among the challenges experienced with most of the caregivers being jobless and lacking

financial, psychological and moral support from other family members. Discrimination and stigma made the caregivers inferior and ashamed of being associated with caregiving tasks. Conclusion. The study provides important insights into the quality of life and perceived burden of care of caregivers of Mentally Ill patients living with HIV/AIDs. It highlights the need for improving the quality of life of caregivers which will in turn improve patient’s care. Caregivers of persons living with HIV/AIDs experience quite a number of challenges in the course of giving care as mentioned in the results section above. However because of their enthusiasm and desire to see their sick relatives comfortable, they strived to provide their services against all odds. Implications Exploring and understanding the experience of caregiving is quite important in identifying gaps in this noble course. Family members and society at large need to appreciate that caregiving is quite cumbersome and those participating in the task should be appreciated and given all necessary support needed to make it a more pleasurable activity and less of a burden.