COVID-19 Vaccine decision-making: trust among the transgender and disability communities in India

ABSTRACT

Background

Historical marginalisation and ongoing trust deficits in health and government systems shape present-day vaccine perceptions among marginalised communities. This paper sought to understand the role of trust in decision-making about COVID-19 vaccine uptake in the transgender and disability communities in India.

Methods

Using a participatory approach we interviewed 24 community representatives, identifying themselves as transgender individuals or as persons with disability, and 21 key informants such as vaccine programme managers, vaccine providers, and community advocates. We undertook an inductive thematic analysis of the data using a socio-ecological model.

Results

Fear of side effects in relation to specific needs of the two communities and mistrust of systems involved in vaccination shaped four different pathways for vaccine decision-making. Mistrust of systems was influenced by past negative experiences with the health system, creating contexts in which information and misinformation are shared and interpreted. Participants negotiated their doubts about safety and mistrust of systems by interacting with different sources of influence showing patterns of decision-making that are dynamic, context-dependent, and intersectional.

Conclusion

These findings will help in determining the content, strategies and approaches to equitable vaccine communication for these two communities. The two communities ought to be included in vaccine trials. Vaccine information must respond to the specific needs of these two communities which could be enabled by collaboration and engagement with community members and influencers. Finally, long-term investment towards the needs of marginalised communities is vital to dismantle cycles of marginalisation and distrust and in turn improve vaccine acceptance and uptake.

KEYWORDS:

• Trust
• COVID-19 vaccines
• transgender persons
• disabled persons
• community-based participatory research
• gender equity

Acknowledgements

This study would have not been possible without the community members who shaped the study as research participants, and through participatory workshops. We thank the advisory board for their continued guidance and support: Hayley MacGregor, L Ramakrishnan, Raj Shankar Ghosh, Sanghamitra Acharya, Shampa Sengupta, Smita Sadasivan, Syamala Gidugu, T D Dhariyal, Vyjayanti Vasanta Mogli. We particularly thank Hayley MacGregor, Supraja Chidambaranathan, Varshini Odayar and Salik Ansari for inputs during study protocol development; Akshay Bandewar, Neeharika Venuturupalli, Shreyus Sukhija, Parimala S for supporting transcription of interviews; Bharti Mishra, Neelam Singh, Prashant Verlekar and Ram Vishwakarma, for pillaring admin and finances for the project; and the network of organisations and individuals who helped us connect to community members across the country. Author contributions: AS, AB, DT, HR, SS, SP and SSB conceptualised and designed the study with inputs from community members. AS, BG, HR, SS, SP and SD collected the data. BG, HR, SD coded and analysed the data which were discussed in weekly investigator meetings. SSB and SS offered inputs during analysis. BG, HR and SD lead the writing and editing of the manuscript and all co-authors reviewed and approved the final draft. All authors contributed to the article and approved the submitted version.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

Anonymised excerpts supporting the findings of this study will be made available on request.

Ethics approval

The study was approved by the Sangath Institutional Review Board (Reference number: EC/NEW/INST/2022/3063, approval date: 04/12/2021, IRB Reference number: AB_2021_75).

Consent to participant

Informed consent (written or verbal) was obtained from all participants.

Notes

1 All names are changed.

2 A practice and a source of livelihood in the ethnocultural kinnar community where they sing, dance and bless auspicious occasions like childbirth and marriage.

Additional information

Funding

This research was funded by a grant from Sabin Vaccine Institute [grant number 050167-00].

Notes on contributors

Sharin D'souza

Sharin D’souza, Assistant Research Coordinator, Sangath, An intersectional rights-based researcher and psychologist with masters in Psychology from Delhi University.

Bhakti Ghatole

Bhakti Ghatole, Research Assistant, Sangath, A gold medallist from Nagpur University and masters from TISS, Mumbai. Bhakti is a disability-affirmative therapist.

Harikeerthan Raghuram

Harikeerthan Raghuram, Associate Director (Health Equity), Sangath, A MSc Health and International Development graduate from LSE and recipient of the Wellcome Award.

Sana Parakh

Sana Parakh, Development sector professional, A development sector professional with MSW from TISS, Mumbai.

Deepak Tugnawat

Deepak Tugnawat, Director of Projects, Sangath, Trained in Physiotherapy and Public Health Management with over 10 years of experience in health research.

Aqsa Shaikh

Aqsa Shaikh, Professor, Community Medicine, HIMSR, Founder Director of Human Solidarity Foundation and India’s only transgender Nodal Officer for COVID-19 vaccination.

Satendra Singh

Satendra Singh, Director Professor of Physiology, UCMS, Part of core group on disability at NHRC, advisor to Delhi state commissioner for PwDs & Delhi State Committee of Research on Disability.

Sunita Sheel Bandewar

Sunita Sheel Bandewar, Secretary General, Forum for Medical Ethics Society (FMES), Mumbai, India; and one of the founding trustees of Vidhayak Trust, Pune, India.

Anant Bhan

Anant Bhan, Mentor & PI, Sangath, Past President of International Association of Bioethics (2017-2019). Anant serves as guest faculty in many institutions and as a resource person on public health and bioethics.