Stigma as a barrier to cancer palliative care outcomes among people with HIV in India

Investigator: Maria Ekstrand, PhD
Sponsor: NIH National Cancer Institute

Location(s): India


Cancer incidence is rising among people living with HIV, as improved access to antiretroviral treatment has led to an increased life expectancy worldwide, including in India, thereby also increasing the need for palliative care services. While it is well known that HIV stigma acts as a barrier to engagement and retention in HIV care, we do not yet know how the additional stigma of cancer may compound this problem. The proposed study would meet this need by adapting our current India HIV stigma measures and African palliative outcome measures for use among people living with co-morbid HIV and cancer in India, and to adapt a novel evidence- based African intervention to improve access to effective palliation and end-of-life decisions throughout the care continuum in India.

As improved access to HIV treatment has led to an increase in life expectancy, cancer incidence is rising among people living with HIV (PLWH) in the West and we anticipate a similar increase in low and middle income countries (LMIC) over the next few years. Provision of palliative care is woefully inadequate in many LMIC, and while research has been making advancements, studies on the unique challenges presented by dually diagnosed patients across the care continuum are lagging. There is now an extensive global literature showing that stigma can have adverse health consequences and lead to delay of care seeking among patients diagnosed with either HIV or cancer in both high income settings and LMIC. However, its role has not yet been studied in terms of access to appropriate and effective palliative and end of life care and we don’t know how stigma operates in people living with both HIV and cancer. Our earlier research showed high prevalence of HIV stigma and discrimination among health care providers, driven primarily by transmission misconceptions, fear, blame, little contact with PLWH and negative views of vulnerable groups. Among PLWH, perceptions of these attitudes, experiences with discrimination, stigma fears and internalized stigma can lead to non-disclosure, depression and non-adherence. The addition of a cancer diagnosis in a setting where health providers have less experience treating PLWH may lead to additional layers of stigma, thus further complicating both care seeking and the provision of treatment. The proposed study builds on our research program on HIV stigma in India and cancer palliative care in sub-Saharan Africa and extends it to palliative care among co-morbid patients in India. The overall aim of the study is to adapt our qualitative and quantitative measures of HIV stigma and palliative care outcomes using a culturally-sensitive model, for use among people living with co- morbid HIV and cancer in India, and to adapt a novel intervention shown effective in Africa to improve access to effective palliation and end of life decisions throughout the care continuum in India. Specifically, we will: 

1. Use qualitative interviews to examine dimensions of Stigma and their Role in care across the care continuum among Patients dually diagnosed with HIV & cancer, their Familymembers, and Health care providers.

2. The qualitative Data will be used to adapt our existing HIV Stigma model and palliative care outcome measures, by adding the unique perceptions and experiences reported by PLWH with cancer.

3. Test this new HIV/cancer Stigma model, by administering the adapted Measures to a sample of 80 PLWH, 80 cancer Patients and 80 Patients diagnosed with HIV & cancer to examine potential barriers to effective cancer palliative care, the association of Stigma with psychological distress, care engagement and outcomes.

This model will subsequently be used to modify our low-cost, scalable Health care provider Intervention, shown to significantly improve palliative care outcomes in Africa and to test this in a future clinical trial. If successful, this could thus have a powerful and sustainable impact on palliative care outcomes in India.