COVID-19 vaccine perceptions in New York State's intellectual and developmental disabilities community

Abstract

Background People with intellectual and developmental disabilities (IDD) are at disproportionate risk for severe COVID-19 outcomes, particularly those living in congregate care settings. Yet, there is limited data on vaccine perceptions in the disability community. Objective To explore COVID-19 vaccine perceptions in individuals with IDD, their family members, and those who work with them, to inform a statewide vaccine information and messaging project. Methods A national survey, adapted in five languages for the IDD community, was distributed to a convenience sample of IDD organizations throughout New York State. Constructs included vaccine intention, reasons for vaccine hesitancy, and trusted sources of vaccine information. Zip code data were used to map respondent location and vaccine preferences. Results Of n = 825 respondents, approximately 75% intended to or had received the vaccine across roles (i.e., people with disabilities, family members, direct care workers) and racial/ethnic groups. Greater vaccine hesitancy was reported in younger individuals and those making decisions on behalf of a person with IDD. Concerns included side effects and the swiftness of vaccine development. Black and Hispanic participants had heightened concerns about being an “experiment” for the vaccine. Trusted sources of information included healthcare providers and family members. Respondents who intended to/received the vaccine were dispersed throughout the state. Conclusions Vaccine preferences in this New York State disability community sample align with national data. Identified concerns suggest the need for community education that addresses misperceptions. Age and race differences in perspectives highlight the need for tailored education, delivered by trusted messengers.

COVID-19 IDD: Findings from a global survey exploring family members’ and paid staff’s perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities (IDD) and their caregivers.

“…A small number of studies examined vaccine uptake, and notably whether persons with IDD faced discrimination if knowingly supported by vaccine-hesitant caregivers. US and Canadian studies reveal conflicting data regarding the intention of support workers to vaccination ( Iadarola et al, 2021 ; Lunsky et al, 2021c ; Unroe et al, 2021 ), although vaccine hesitancy findings have prompted national campaigns to promote reliable information on vaccination ( National Association of Councils on Developmental Disabilities, 2021 ). A large longitudinal study of direct support workers in the US identified 69% as being fully vaccinated, and a fear that vaccination was unsafe as the main reason for not being vaccinated ( Institute on Community Integration, 2021 ).…”

COVID-19 Vaccination Intentions amongst Healthcare Workers: A Scoping Review

“…These papers collected data between January and February 2021, when vaccination was not mandated in the USA and Canada. Iadarola and colleagues [ 30 ] focused not only on the HCWs who care for people with ID but also individuals diagnosed with ID and family members of people with ID (e.g., individuals who spend time with people with ID and make decisions for them). The vaccine intentions did not significantly vary across these three groups.…”

“…The other socio-demographical characteristics, such as profession, gender, ethnicity, education and geographical location, were not statistically significant predictors of vaccine willingness. In Iadarola et al [ 30 ], there was, however, an interaction effect between age and ethnicity. In both Black and White respondents, those over the age of 50 were less vaccine-hesitant than their younger counterparts.…”

“…A total of 26 papers were selected and analysed, focusing on the socio-demographical predictors of vaccine willingness and the attitudes that inspire vaccine hesitancy in HCWs. Only two papers focussed on HCWs working with individuals with ID [ 30 , 35 ]. The vaccine willingness percentages were comparable between the respondents of these two papers and within the subgroups of these papers.…”

“…In the two papers that describe vaccine hesitancy in HCWs that care for people with ID [ 30 , 35 ], the main socio-demographical predictor of willingness was age, with younger people being more hesitant for vaccination. The other socio-demographical characteristics, such as profession, gender, ethnicity, education and geographical location, were not statistically significant predictors of vaccine willingness.…”