New study reveals critical role of trust in vaccine decisions for transgender and disability communities in India

Study highlights trust in systems and structural gaps in vaccine information as critical factors in motivating COVID-19 vaccine uptake among transgender and disability communities in India

Amidst ongoing efforts to combat the COVID-19 pandemic, a new study sheds light on the crucial role of trust and access to information in the decision-making process regarding COVID-19 vaccination among India’s transgender and disability communities. The study was conducted at the initiative for Health Equity Advocacy and Research (iHEAR) hosted at the Sangath Bhopal Hub.

The study found that trust in systems like government health and pharmaceutical institutions was key in influencing attitudes towards vaccination among the two communities. This systemic trust and distrust shaped how people navigated vaccine decision-making. Further, decisions to take or reject the vaccine were made in the context of historical and ongoing marginalisation within health and social systems. For example, challenges to livelihood and survival during the pandemic made vaccination a lower priority among some in the kinnar community. Anxieties about potential side-effects in relation to specific health needs also remained unaddressed and caused delays in vaccination.

Findings from this study have implications for the participatory design and delivery of public health interventions for enhancing effectiveness of communication campaigns and increasing uptake of services among marginalised communities. The study sets a vital precedent for building cross-movement solidarity and looking at how health systems marginalise multiple communities in unique and intersectional ways.

The study was conducted between September 2021 to February 2023, and involved interviews with 24 community representatives identifying as transgender individuals or persons with disabilities, along with 21 key informants including vaccine program managers, providers, and community advocates. A unique aspect of the project was that it was co-led and co-designed by trans and disability community members.

Insights from the study indicate:

Fear of side effects in relation to specific health needs

Individuals from transgender and disability communities had concerns regarding how vaccines interact with their specific healthcare needs. This led to longer decision-making periods and delays in getting vaccinated. For transgender individuals, considerations such as the impact of vaccines on gender-affirming care like hormone therapy were significant. Doubts also existed among people living with HIV about the interaction of their treatment with the vaccines. Similarly, persons with disabilities expressed worries about the potential side-effects of the vaccines in relation to their existing medical conditions or medications.

Influence of systemic trust on vaccine decision-making

Attitudes towards COVID-19 vaccines were shaped by trust in systems like health systems, pharmaceutical companies, scientific bodies, and government systems. While most participants wanted to take the vaccine, with some having concerns about side-effects, a few others were skeptical of the vaccine and took a longer time in deciding to take it. Still others were highly distrustful of the vaccine and expressed distrust of the government and health systems. For them, vaccine rejection was also seen as a mark of protest and resistance against historical and ongoing marginalisation. People with multiple marginalisations from the disability, trans and Kinnar community shared that they experienced violence and neglect and challenges to livelihood and survival during the pandemic. In this context vaccination was not as much of a priority.

Based on these insights, the study recommends:

Inclusion in vaccine trials: Vaccine trials and vaccination research should include trans and disability communities. Evidence about the interaction of vaccines and specific health needs of the two communities can be key in addressing anxieties about potential side-effects and help people make an informed decision.

Co-designing communication campaigns: To build confidence in the vaccine, it is not enough to generate information, communication campaigns must be co-designed by communities and delivered in accessible formats through targeted outreach.

Partnering with community leaders: Vaccine programs must partner with community influencers, leaders and community-based organisations for mobilising people through vaccine and health related communication campaigns.

Sensitising vaccine program teams: Vaccination programming teams must be educated and sensitised about trans and disability affirmative care to ensure equitable responses to the vaccination and health needs of these communities.

Importance of intersectional approaches: Services must be designed and implemented with the consideration that one size does not fit all, and the two communities are very diverse. Recognition of multiple marginalisations can help tailor programs equitably to increase uptake.

Sustained investment in socio-economic and health needs of trans and disability communities: To re-build trust and facilitate the uptake of health services, public health systems must work towards addressing systemic barriers and structural cycles of stigma, homelessness, poverty, policing, violence, incarceration, and unemployment that shape vaccine inequities, and systemic distrust.

Dr Satendra Singh, study co-investigator and disability justice defender said, “A recent revelation from the Missing Billion 2022 report unveils a somber truth: disabled individuals in South Asia bear the disproportionate burden of mortality, resulting in an average reduction in life expectancy of 10-17 years. Our recent study highlights the overlooked challenges faced by the transgender and disability communities in vaccine rollouts, emphasising the imperative of an intersectional approach and addressing communication inequities as pivotal factors in restoring trust and increasing vaccine uptake. We discovered that past negative experiences with the health system have fueled mistrust, while decision-making patterns proved to be dynamic and context-dependent, thus underscoring the critical importance of inclusion in vaccine trials.”

Dr Harikeerthan Raghuram, Associate Director (Health Equity), Sangath said, “Leaders should stop painting whole communities as ‘people who are not coming forward to get a vaccine’. This is because, as the study shows, decisions about whether or not to get vaccinated today are made in the light of negatives experiences transgender and disability communities have had for many decades within and outside of healthcare. To resolve this we must work towards regaining that trust step by step.”

Dr Anant Bhan, the co-principal investigator and Mentor, Sangath Bhopal said, “Through this study, we endeavoured to explore on how vaccination and health systems end up marginalising disabled and transgender identities in different and intersectional ways. Our findings indicate the need to invest in the socio-economic and health needs of marginalised communities and rebuild trust. Our study shows that trust in government, health, scientific and governance were key in shaping attitudes towards and motivation to get the COVID-19 vaccine. We also learnt that vaccine inequities are often shared at the individual decision-making level, where in the context of past experiences and their specific health needs, people from the two communities were grappling with anxieties about side effects and lack of information and guidance in this regard. For example, how would HRT interact with the vaccine? How would the vaccine impact a person with disabilities and comorbidities? Thus, tailored and targeted communication campaigns and sustained partnerships with community members and community-based organisations are key to addressing concerns and facilitating vaccine uptake.”

Dr Sunita Bandewar, study co-prinicipal investigator and Director, Forum for Medical Ethics and Society (FMeS) said, “I believe that the methodological approach for this research namely community-based participatory research we adopted to this research has made a difference to the findings of this study. It offered the research team and participating communities to work collaboratively. And it also has offered us many learnings which going forward will be useful for working WITH marginalised communities.”

Sharin Dsouza, Assistant Research Coordinator, Sangath said, “I think this study underlines how vaccine inequities start much before reaching the center, they start when people are thinking about taking vaccines. In the case of the COVID-19 vaccine, we learnt that just like any other community most people in the trans and disability community wanted to take the COVID-19 vaccine and safeguard their health. But in the absence of clear information on how the vaccine might affect their disability, HIV treatment or in the case of trans participants, HRT and gender affirming surgeries many expressed concern and confusion while deciding to take the vaccine, delaying their vaccination.”