Introduction

Palliative care coverage and opioid consumption in India are relatively low compared with global data. The literature suggests commonplace concealment and collusion in withholding information, but these hypotheses lack evidence.

Objectives

This study aimed to develop an explanatory evidence-based model of stigma, communication and access to cancer palliative care in India that can be used to develop, test and implement future interventions.

Design

This cross-sectional qualitative study sampled advanced cancer patients (n=10), their family caregivers (n=10) and oncologists (n=10). Grounded theory procedures were utilised to analyse transcripts, and a theoretical model generated.

Setting

A tertiary teaching hospital in South India.

Results

The model explains how stigma associated with communicating a diagnosis of advanced cancer is enacted by treating oncologists, family members and community. This leads to patient expectations of cure and futile treatment uptake. Patients commonly only present needs with respect to pain, not within psychological, social or spiritual domains, likely due to the lack of patients' insight into their diagnosis and prognosis. As a result of oncologists' and families' unwillingness to disclose the prognosis, and patient focus on pain due to their lack of insight, palliative care clinicians view their services as under-utilised, and patients perceive palliative care as a pain management service that is not 'different' from other clinical services. Advanced care needs and purchase of futile treatments lead to lost employment among families, increased family debt and high care costs, which are rarely disclosed due to their unwillingness to discuss their needs.

Conclusion

Our novel theoretical model is an essential first step to ensure that complex interventions are plausible, with mechanisms of action that address the needs of relevant stakeholders. A family-centred approach with an oncology workforce skilled in communication and an enabled patient population could increase access to palliative care, and improved outcomes may be attainable.

Suboptimal adherence to Antiretroviral Therapy (ART) regimens can lead to the development of drug resistance, virologic and clinical failure, and, on the community level, the spread of drug-resistant HIV. To design effective interventions, it is crucial to understand locally specific barriers to optimal adherence. Self-report data from a cross-sectional sample of 527 adherence-challenged people living with HIV (PLWH) in the South-Indian state of Karnataka showed that they took on average 68% of prescribed doses in the past month. Large majorities of participants encountered individual (95%), social/structural (88%), and clinic/regimen (80%) adherence barriers. Multivariate linear regression analyses of past month adherence showed that disclosure to all adults in the household was positively related to adherence, as was employing a larger number of adherence strategies, perceiving more benefits of ART, and having been on ART for longer. Fears of stigmatization upon disclosure of HIV-status to friends and people at work were negatively related to adherence. These results suggest that some barriers, especially individual-level barriers like forgetfulness are very common and can be targeted with relatively simple individual-level strategies. Other barriers, related to fear of stigma and lack of disclosure may require family- or community-level interventions.

The success of antiretroviral therapy (ART) has led to both extended life expectancy and improved quality of life among people living with HIV (PLWH). To maximize the efficacy of first line ART regimens in low- and middle-income countries (LMIC), we need culturally-relevant interventions that empower participants to reduce barriers to long-term uninterrupted adherence. The Chetana adherence intervention trial was designed in collaboration with local community groups as a comprehensive wellness program for adherence-challenged PLWH and included peer-led adherence support, yoga, nutrition, information about local resources, and individual counseling using motivational interviewing techniques. Intervention arm participants were almost twice as likely to be virally suppressed at their 12-month follow-up visit (AOR = 1.98; 95% CI [1.2, 3.23]) as were participants in the active control arm. They were also about twice as likely as control arm participants to self-report ≥ 95% adherence (AOR = 1.86, 95% CI [1.09, 3.15]), and as having eliminated individual adherence barriers (AOR = 2.33, 95% CI [1.51, 3.62]) and clinic attendance barriers (AOR = 2.01, 95% CI [1.20, 3.38]) These low-cost strategies can be implemented by local NGOs, making it both scalable and sustainable in this and similar settings.