Toward an Equity-Driven Conceptual Model of COVID-19 Vaccine Decision-Making for People with IDD

Authors

Lydia Ocasio-Stoutenburg, The Pennsylvania State UniversityFollow
Reese Triana, University of M iamiFollow
Shelly Baer, University of MiamiFollow
Jairo Arana, University of MiamiFollow
Ana C. Sale, University of MiamiFollow
Douglene Jackson, GIFTS InstituteFollow
Michelle Schladant, University of MiamiFollow
Nastasia Boulos, University of MiamiFollow
Grace Dima, University of MiamiFollow
Jeffrey Brosco, University of MiamiFollow

Abstract

COVID-19 presented a public health emergency in the U.S., resulting in severe illness, hospitalizations, high mortality rates, and long-term adverse health care conditions. Several studies examined the disparities in transmission rates, barriers to care, and negative health outcomes for persons with disabilities, particularly people with intellectual and developmental disabilities (I/DD). While data revealed similar trends among Black, Hispanic or Latino/a/x/e, Native, Indigenous, and Asian people, outcomes are compounded for people of color with I/DD. Several historical, pervasive, systemic, structural, and attitudinal barriers have constrained healthcare access and adequate treatment, instigating feelings of distrust among those in systems of care. Although vaccination is effective in minimizing adverse outcomes, COVID-19 vaccine policies and rollouts have also followed inequitable patterns in distribution and accessibility. To better address the concerns and needs of communities, a multidisciplinary team at a University Center of Excellence in Developmental Disabilities (UCEDD) engaged in a generative, multistep, systematic process to explore factors that influence vaccine confidence among people with I/DD, their families, and support circles, particularly people of color with IDD. Garnering data and input from multiple sources, we uncovered several complexities around vaccination, which include (a) accessibility; (b) context, history, and sociocultural concerns; (c) policies; (d) communication and media; and (e) a continuum of vaccine confidence and supported decision-making. Findings from these efforts underscore the centrality of equity and trust, with implications for practitioners, institutions, policymakers, and public health strategists. Furthermore, our model can serve as a useful framework for people invested in promoting healthcare equity in vaccination for people with I/DD and with multiple marginalized identities.

Plain Language Summary

COVID-19 is a public health emergency, causing serious illness in the U.S. Many people with disabilities and people of color have already had barriers accessing healthcare and other things they need. COVID-19 has had an even greater impact on these communities, especially people who are Black, Hispanic/Latino, Native, and people with intellectual and developmental disabilities (I/DD). Even though the COVID-19 vaccine is effective and safe, not everyone has access to the vaccine or has trust in it. In this paper, we discuss how we developed a model for vaccine decision making for people with I/DD. We reviewed research and talked with communities to help us understand what affects vaccine decisions. The findings show how complex the decisions are, especially since people with I/DD do not always make health decisions on their own. Many factors like history, communication, and the news affect people’s vaccine decisions. Because barriers still exist for people with I/DD, fairness and trust can help people feel supported in their decisions. This model can help public health and policymakers learn what works to build confidence and better support people’s needs.

Creative Commons License

This work is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 4.0 License.

Recommended Citation

Ocasio-Stoutenburg, Lydia; Triana, Reese; Baer, Shelly; Arana, Jairo; Sale, Ana C.; Jackson, Douglene; Schladant, Michelle; Boulos, Nastasia; Dima, Grace; and Brosco, Jeffrey (2023) "Toward an Equity-Driven Conceptual Model of COVID-19 Vaccine Decision-Making for People with IDD," Developmental Disabilities Network Journal: Vol. 3: Iss. 2, Article 10.
DOI: 10.59620/2694-1104.1073
Available at: https://digitalcommons.usu.edu/ddnj/vol3/iss2/10