Arogya Sambal Shiksha Hoikarop Adhar

Expanding the Continuum of Care: A Programme to Strengthen and Support Community-Based Caregivers for HIV in Goa

To develop an intervention program to strengthen and support community-based caregivers of people with HIV/AIDS and thus improve their quality of life and that of the people they care for.

HIV is a serious public health problem in India with about 2.5 million people living with HIV/AIDS (PLHA). Goa, is a ‘medium’ prevalence state (prevalence approaching one per cent) and has certain vulnerabilities such as marginalization of migrant communities gender-based violence and fragmented service providers.

Though home-based care is an integral part of caring for PLHAs, the burden on caregivers and the support they may need in providing optimum care has gone largely unaddressed. Mental health and nutrition have been identified as key components of an effective community-based HIV care program, but have not been assessed adequately or integrated into existing programs.

What We did
The ASHA program supported PLHAs and their families by identifying, supporting and building the capacity of informal caregivers with particular emphasis on developing supportive environments, promoting mental health and nutrition, respite care, socio-economic support and integrating community based care into the existing continuum of care.

This was done by developing a sustainable model involving community based outreach workers supporting PLHAs and their care-givers. The project was systematically evaluated and we presented the results at a dissemination meeting in January 2009 which was attended by the Director of the Goa State AIDS Control Society and other groups concerned with the welfare of PLHIV.

 Of the one hundred and eighty eligible people, outcome data was available on 152 (84 per cent) and end-line assessments completed on 102 (57 per cent). The majority were women and non-Goan. Twelve per cent had migrated within five years. Seventy-three per cent earned less than Rs.2000 and 25 per cent spent more than Rs.1000 on health in the past month. Seventy-one per cent of the caregivers were women. Two-thirds of the women were unemployed and half were illiterate.

Poor Quality Of Life (QOL) was associated with common mental disorders, physical symptoms and low body mass index. Death was more likely in those with a low BMI and less likely for those on ART. The proportion of PLHA receiving ART, having a BMI over 18.5, and being in a support group increased one year after enrollment.

One hundred and nine PLHAs received an independent psychiatric assessment, which found 54 (49.5 per cent) suffering from a mental disorder. Of these, 38 (35 per cent) were diagnosed as having a depressive illness, 10 (9 per cent) had alcohol abuse / dependence, 3 (2.8 per cent) had psychosis and one person had dementia. In addition, 31 (28 per cent) PLHA had a moderate to high suicide risk.

Risk factors found to be associated with mental health problems in PLHA are illiteracy, short duration since detection of seropositivity and problems with disclosure.

These results highlight the importance of integrating mental health programs within HIV treatment programs. In addition to improving the overall QOL of PLHAs, interventions should aim at improving nutritional status and general health status