Caregiver Burden among Adults Caring for People Living with HIV/AIDS (PLWHA) in Southern India

Abstract

In India, family caregivers provide bulk of care to People Living With HIV/AIDS (PLWHA). Caregiver burden refers to the physical, emotional and financial hardships associated with providing care to a diseased individual. Attending to the needs of PLWHA can place a significant burden on family members. This may adversely affect their Quality of Life (QOL). The main aim of our study was to assess the caregiver burden and QOL among the family members of PLWHA in Southern India. We also determined the impact of caregiver burden on QOL. This facility based cross-sectional study was carried out at Kasturba Medical College (KMC) Mangalore. The study was conducted over a period of 18 months starting from October 2013. A total of 360 caregivers participated in our study. The data were collected by face-to-face interview. Caregiver burden was assessed using the Zarit Burden scale & WHOQOL-BREF scale was used to assess the QOL of caregivers. The collected data was entered and analysed using SPSS version 11.5. A p-value of less than 0.05 was considered statistically significant. The mean age of caregivers was 36.09± 10.18 years. Most of the caregivers were females 279 (77.5%). Majority of caregivers 184 (51.1%) belonged to Middle/Lower Middle socioeconomic class (Kuppuswamy class III). Majority of PLWHA 155 (43.1%) had Stage 2 disease. Mean CD4 count of the patients was 405.2± 240 cells/μL. In our study 88(24.4%) caregivers had moderate to severe burden and 36(10%) had very severe burden. Physical domain of QOL showed maximum score of 60.28±13.08, while a minimum score of 51.88 ± 14.20 was seen in social domain. With increase in caregiver burden, the mean QOL scores decreased which was statistically significant. Our study highlights the need to counsel the caregivers on how to deal with PLWHA in the family. Family care plays a major role in the general wellbeing of PLWHA. Majority of national HIV programmes all over the world focus mainly on PLWHA. National programmes should immediately address the mental health issues of caregivers thereby reducing caregiver burden. More studies on this topic have to be conducted in developing countries.