COVID-19 Vaccine Hesitancy Among Caregivers of Developmentally Disabled Youth

Educational Objectives

• The reader will be able to describe several reasons caregivers of developmentally disabled individuals may be hesitant to receive the COVID-19 vaccine.

• Readers will be able to describe the benefits of a forced-choice assessment to evaluate reasons for vaccine hesitancy.

• The reader will be able to identify topics of conversation to address their patient’s hesitancies about the COVID-19 vaccine.

A Forced-Choice Evaluation of Reasons for COVID-19 Vaccine Hesitancy Among Caregivers of Developmentally Disabled Youth

The coronavirus disease of 2019, better known as COVID-19, is caused by SARS-CoV-2. The rapid spread of this virus produced the second pandemic of the 21st century. ¹ Secondary to significant government funds, researchers and clinicians developed and demonstrated the safety of a COVID-19 vaccine. Vaccines deliver infectious agents with the goal of prompting immune response without direct exposure to a disease. ² Vaccinating a large enough group of individuals reduces the risk of infection for a community. ³ Vaccines may be particularly important for individuals diagnosed with developmental disabilities. ⁴ Research documents that these individuals are at a higher risk for medical comorbidities and would likely benefit from vaccines that mitigate risk for disease. ⁵

Although vaccines represent an evidence-based intervention, a portion of the general public remains hesitant to vaccinate themselves or their children. ⁶ Caregivers of developmentally delayed individuals appear particularly prone to vaccine hesitancy. ⁷ An unfortunate publication fabricating relations between vaccines and autism spectrum disorders contributed to this pattern. ⁸ Despite the retraction of this article, a change in uptake of vaccines has clearly occurred. Research documented the re-emergence of highly contagious diseases since this publication. ⁶ An analysis of COVID-19 vaccine acceptance indicates that developmentally disabled youth, particularly those under the age of 16 years, are less likely to be vaccinated against COVID-19 than the general population. ⁹ These data suggest that this already vulnerable population of individuals is at an increased risk of COVID-19 infection.

Understanding vaccine hesitancy among developmentally disabled individuals and their caregivers represents a complex issue. Researchers have suggested reasons for vaccine hesitancy via focus groups or surveys and have identified the novelty of the COVID-19 vaccine, side effects of the vaccine, and mistrust in the health care system as potential reasons for vaccine hesitancy. ⁷ However, no studies have presented reasons for vaccine hesitancy within a forced-choice format. Data directing individuals to select 1 of 2 reasons for vaccine hesitancy will help create a hierarchy of reasons that contribute to hesitancy more or less than others. ¹⁰ The purpose of the current investigation was to recruit caregivers of developmentally disabled children to respond to a forced-choice survey regarding reasons for vaccine hesitancy to identify a hierarchy of the hesitancies that seem to be most likely to affect decisions to vaccinate their child against COVID-19.

Method

Participants and Setting

We recruited 87 caregivers over the age of 18 years to participate in this survey. Caregivers received the invitation to participate in this survey from their local school district. This study contacted 5 school districts that served rural areas of a state in the Mountain West region of the United States. All school districts contacted by the research team agreed to support this study. Caregivers received the invitation if their child’s individualized education plan identified them as qualifying for services under a developmental disability (eg, autism spectrum disorder). Approximately 1321 caregivers received this survey. Thus, we recorded a response rate of 7%. All participants identified as white and Not Hispanic or Latino. Participants completed the survey on a computer, tablet, or smart phone. The author’s institutional review board deemed this project as exempt.

Dependent Variables

The primary dependent variable was caregiver choice while completing the survey. To calculate percentage of times each reason for vaccine hesitancy was selected, we added the number of times each reason for vaccine hesitancy was endorsed and divided that by the number of times that reason for vaccine hesitancy was presented (7 times). We multiplied this value by 100 to produce a percentage.

Procedures

The research team connected with school districts and discussed details regarding the purpose of the survey and logistics for completing the survey with leadership. Leadership then disseminated a brief description of the project along with a web link to complete the survey via e-mail to all caregivers of students with individualized education plans.

The research team used the Qualtrics platform to administer the survey. Caregivers expressed consent to participate in this survey by opening the survey and answering questions. When caregivers opened the survey, they responded to questions about completing the survey in English or Spanish, their race/ethnicity, and whether the caregiver received the initial COVID-19 vaccine series, a booster dose, and whether their child received the initial vaccine series and/or a booster shot. After responding to these questions, caregivers answered 28 forced-choice questions. Each question asked which of 2 reasons for vaccine hesitancy were more impactful for their decision not to vaccinate their child. A third option was always available to the caregivers to indicate that neither reason affected their decision to vaccinate their child against COVID-19. We evaluated the relative impact of COVID-19 vaccine side effects, mistrust in the government, mistrust in the health care system, religious or cultural reasons, unable to drive to a vaccination clinic, not knowing where a vaccination clinic is located, the COVID-19 vaccine is too new, and concern the COVID-19 vaccine was not satisfactorily tested on people with disabilities on vaccine hesitancy. An example forced-choice scenario on the survey was, “What is your most pressing concern? A) Being unable to drive to a vaccination clinic, B) Concern that the Covid-19 vaccine was not satisfactorily tested on people with disabilities, and C) Neither affects my decision making.” After responding to each question, the survey transitioned to the next question such that 1 question was presented at a time. The survey concluded with a statement of thanks to the caregivers for completing the survey.

We analyzed these data using visual inspection of choices between caregivers who did or did not receive at least 1 dose of the COVID-19 vaccine. We visually analyzed the level of choice allocation for each reason for vaccine hesitancy. In addition, we used a Mann-Whitney U-test to statistically analyze differences between the means of reasons for vaccine hesitancy among caregivers who did or did not receive at least 1 COVID-19 vaccination.

Results

Of the participants enrolled in this study, 48% of the children of participating caregivers had received at least 1 COVID-19 vaccine but not the full series plus booster shot. 78% of caregivers participating in this study had received the 2 dose initial series of the COVID-19 vaccine, 66% of participants had received the 2 dose series plus 1 booster shot, and 15% of caregivers reported receiving no COVID-19 vaccine at the time of this study. As evidenced by the Mann-Whitney U-test, we did not find significant differences in responses to the survey between participants who had and had not received at least 1 COVID-19 vaccination.

Figure 1 provides a graphical representation of choice allocation for all 87 participants. When considering all participants together, the most commonly endorsed reason for vaccine hesitancy was concern that the COVID-19 vaccine was so new (mean = 50.8%; SD = 40.8), which was closely followed by concern for COVID-19 vaccine side effects (mean = 50.3%; SD = 40.1). The next most commonly endorsed reason for vaccine hesitancy was mistrust in the health care system (mean = 28.8; SD = 38.1), mistrust in the government (mean = 27.2%; SD = 31.2), and concern that the COVID-19 vaccine was not satisfactorily tested on people with disabilities (mean = 16.8%; SD = 30.5). Less common reasons for vaccine hesitancy were being unable to drive to a vaccination clinic (mean = 5.5%; SD = 16.2), not knowing where a vaccination clinic is (mean = 3.3%; SD = 8.4), and religious or cultural reasons (mean = 2.2%; SD = 6.8). Interestingly, 53.7% of respondents indicated “neither” reason for vaccination hesitancy affected their decision to vaccine their child.

Figure 1.

Percentage choice allocation between reasons for vaccine hesitancy.

Discussion

This study evaluated reasons for COVID-19 vaccine hesitancy within a forced-choice format with 87 caregivers of developmentally disabled youth. Aggregate data showed concern for the COVID-19 vaccine being new and concern for COVID-19 vaccine side effects seemed to be most likely reasons for hesitancy with vaccinating their children. Data from caregivers who had not received any vaccination showed the same, albeit stronger, concerns. For example, nonvaccinated participants reported concern for the vaccination being new as a reason for hesitancy 57.1% of the time while vaccinated caregivers indicated this as a reason for hesitancy 44.4% of the time. No statistically significant differences between the groups existed when evaluated with a Mann-Whitney U-test. This was likely due to our relatively small sample size, and we feel that this should be an area for future investigation. Medical professionals working with individuals reporting a higher level of hesitancy, like those that have not been vaccinated, may need to adjust strategies for having conversation about vaccines.

The primary hesitancies were shown to be concerns for the vaccine being new and concerns for COVID-19 vaccine side effects. Incidentally, these are the most common hesitancies discussed in the media. Cascini et al ¹¹ showed individuals who reported strong beliefs in information obtained from social media were significantly more likely to be hesitant about receiving the COVID-19 vaccination. Using data from this study, along with an understanding of the effect of media on vaccine hesitancy, it seems that primary care physicians should warn families about misinformation on social media and/or partner with families in a community to ensure evidence-based information is disseminated via social media.

This study is not without limitations. First, the list of vaccine hesitancies evaluated within this study is not exhaustive. A majority of participants reported several of the presented choices did not affect their decision to (not) vaccinate their children. The hesitancies evaluated had been included in previous studies, but there are likely many other hesitancies that affect caregivers of developmentally disabled youth. Future research should engage in exploratory study of hesitancies that may affect vaccine adherence among this group of youth and consider evaluating them within this forced-choice format. Second, all participants enrolled in this study are identified as white. A potentially related issue is our low response rate. One barrier to participating in this study could have been the e-mail recruitment method. Future research could attempt to provide alternative ways to participate in the project that does not rely on e-mail communication.