Stroke and TIA Survivors’ Perceptions of The COVID-19 Vaccine: Cross Sectional Survey

Background People who experience a stroke or transient ischaemic attack (TIA) have greater risks of complications from contracting COVID-19. Vaccine uptake in this vulnerable population is important to reduce the burden of COVID-19 on healthcare services and society. To prevent vaccine hesitancy and maximise compliance, we need to better understand individuals’ views on the vaccine. We aimed to explore perspectives of people with stroke/TIA on the COVID-19 vaccine and inuences on its uptake. Method We conducted a cross-sectional, electronic open survey comprising multiple choice and free text questions. Convenience sampling was used to recruit people who have experienced a stroke and/or TIA, and were residents in the UK or Ireland. Results offered but 8% had not been offered the vaccine despite being eligible.

Introduction COVID-19 has had a signi cant impact on society since December 2019, particularly in terms of mental health,(1) physical health (2,3) and widening social inequalities (4). One major part of the management strategy for this virus is COVID-19 vaccinations. (5) For the vaccine to be effective, we need to ensure that the population is generally compliant with the vaccination programme. To avoid vaccine hesitancy and maximise compliance, we need to better understand individuals' views on the vaccine. 'Vaccine hesitancy' has been identi ed as one of the top 10 threats to global health in 2019.(6) COVID-19 disproportionately affects certain groups, who are considered higher risk. Therefore, it is particularly important for these vulnerable groups to have high uptake of the vaccine and for any 'vaccine hesitancy' to be addressed. Previous studies have explored the views of the COVID-19 vaccine from the general population (7)(8)(9)(10) and speci c groups, including healthcare workers' (11)(12)(13)(14) and parents/guardians. (15) However, none have undertaken this research in a vulnerable patient group, who are at high risk of severe COVID-19, like stroke and transient ischaemic attack (TIA) patients.(16) Anecdotal evidence from stroke/TIA forums, patient partners and Stroke Association (UK's largest stroke charity) enquires suggest some people who have experienced a stroke/TIA had concerns about the vaccine, including: safety and effects on stroke prevention medication, and uncertainty about vaccine eligibility and trusted information sources. Furthermore, there have been initiatives from stroke organisations, including the Stroke Association and British Association of Stroke Physicians, to increase vaccine uptake in this population. (17,18) Identifying and understanding in uences on individuals' decisions to receive the COVID-19 vaccine is integral to inform strategies to improve vaccine uptake. Therefore, we conducted a survey to better understand stroke and TIA survivors' perspectives of the COVID-19 vaccine and in uences on uptake of the vaccine.

Methods
Survey development and pre-testing Survey content was informed by patient partners, vaccine hesitancy literature and the behaviour change model COM-B (Capability, Opportunity, Motivation -Behaviour). (19) The survey was reviewed by patient partners, the Stroke Association and the UK/Ireland TIA and minor stroke special interest group. Functionality and usability were tested by the research team and patient partners.
The survey comprised questions about receipt of the COVID-19 vaccine, perceptions of the vaccine (including safety, access to the appointment, beliefs and social in uences, knowledge and understanding) and perspective of COVID-19. Questions were mapped to COM-B. Demographic information was also collected (Appendix 1).
The study was approved by the University of Birmingham Ethical Review Committee (Reference ERN_ 21-0156). Participants provided electronic informed consent and no identi able information was collected.

Recruitment and survey administration
We used an electronic, open survey (i.e. not password protected) hosted by SmartSurvey. Completion was voluntary and no incentives were provided. Participants were eligible if they had experienced a stroke or TIA and were residents in the UK or Ireland.
We used convenience sampling with dissemination via social media (Twitter, Facebook); Stroke Association newsletter; and Stroke Association local support services. In some cases where participants were unable to complete the survey, it was administered by interview from a research nurse or carer.

Context of vaccine roll out
The survey was open between 26th February and 12th April 2021. Stroke/TIA patients were part of priority group 6 who were eligible to receive the vaccine on 15/02/2021 (i.e. during the time of survey dissemination). In March 2021 there was media coverage around the AstraZeneca vaccine and risk of blood clots.

Patient and public involvement and engagement
The original idea of the survey came from one of our patient partners based on personal experience and from observing discussions on stroke/TIA forums. Patient partners were integral to creating the survey content, testing usability and designing recruitment strategies. Patient partners reviewed the results and provided important lived experience insights to interpret the ndings. We continue to work with our patient partners to disseminate the ndings to stroke/TIA patients and key stakeholders.

Data analysis
Quantitative survey data was summarised using descriptive statistics. Tests of statistical signi cance were not conducted. NVivo 12 was used to manage, sort, code and organise free text comments. The World Health Organisation's (WHO) 3C's (Complacency, Convenience and Con dence) model for vaccine hesitancy and COM-B were used as frameworks for a deductive content analysis. Text was coded by GT, an experienced qualitative researcher. The nal analysis and interpretation were discussed with the research team and patient partners.

Results
The survey was completed by 377 people who have experienced a stroke and/or TIA. The majority of the sample were White (96.0%: 362/377) and 43.2% (163/377) were male ( Table 1). Most of the sample had not experienced COVID-19 (78.8%: 297/377).  Table 2). The vaccine was declined by 2% (7/377) and 3% (11/377) had been offered the vaccine but not yet taken it up. 8% (30/377) had not been offered the vaccine despite being eligible, of these: 23 were de nitely or very likely to accept; 3 were likely to accept; and 4 were unlikely or very unlikely to accept the vaccine.  98.6% (352/357) of respondents strongly agree/ agree that they knew other people who have had the vaccine. Very few respondents strongly agree/ agree that they have general mistrust of vaccines (6.2%: 22/357) or religious/cultural beliefs affected their decision (3.4%: 12/357).
Access to the vaccine appointment Figure 3 summarises survey responses to questions about access to the vaccine appointment. The vast majority of the sample strongly agree/ agree that they understood how to get the vaccine (90.8%; 327/360). Most of the sample strongly disagree/ disagree that they had di culty accessing the vaccination appointment (67.8%; 244/360).
Knowledge and understanding Figure 4 summarises survey responses to questions about knowledge and understanding of the vaccine.
Most people strongly agree/ agree that they are satis ed with their knowledge and understanding of the vaccine (77.8%; 284/365). Two thirds of respondents strongly agree/ agree that the understand where stroke/TIA is on the vaccine priority list (66.8%; 244/365). Nearly half of the sample strongly agree/ agree that they searched for vaccine information speci cally for stroke/TIA patients (47.5%; 169/356). Only a third (33.2%: 121/365) strongly agree/ agree that they were satis ed with the information they found.
The most frequently used sources to get of information about the vaccine were: NHS website (n=167); Stroke Association website (n=151); Google (n=132) and Government website (n=132) ( Figure 5). Other people's concerns related to unknown long-term side effects. These concerns were often related to the "newness" of the vaccine.

Perceptions of COVID-19
"Not sure that it is safe. Wondering if the whole world will be a grand science experiment as there is no long term study on any of the vaccines." "Big worry is that virus is so new how have they found a vaccine in less than 12 months. I was worried I would die" Vaccine side effects There were 57 unprompted free text comments relating to people's experience of side effects from the vaccine. A third reported no side effects. Half reported mild or short-lasting side effects, including sore arm, high temperature, cold/ u-like symptoms, headaches, chills, tiredness, sore throat and generally feeling unwell. The remainder reported moderate, severe or long-lasting side effects, including fatigue, severe migraines, headaches, vertigo, feeling dizzy, nausea, muscle weakness and reduced mobility.

Mistrust of the government/ vaccine and non-speci ed concerns (COM-B: Motivation)
A small minority expressed a mistrust in the government's response to the virus or the vaccine.
"I do not trust the goverment [sic] statistics. I don't see any sign of a pandemic any more than the usual u outbreaks we get yearly. I feel there is more to this than we are being told. I don't like the fact we are being controlled and made to feel we have to have a vaccine in my body with pier [sic] pressure. Too many control measures being put on us." "This government does not give you any options with this vaccine. I don't trust this government they lie constantly and they haven't listened to the science. I know my doctor will probably say the line that they have been told. I just want the impartial advice. Perhaps l wouldn't feel like this if l thought this government cared." Some people had unspeci ed concerns. Some people conveyed their trust in the vaccine's effectiveness; however, often recognised that it is not a "cure".
"The vaccine will reduce the impact of the virus thus preventing admission to hospital. The vaccine is not a cure." "I put my full trust in the vaccine." Other people were more sceptical about the vaccine's effectiveness.
"It is not proven that by getting vaccinated or not is any less likely I wont [sic] get Covid [sic] or pass it on… Testing is the best way not vaccination." "Again we really don't know whether this is going to work or not it is down to the facts in two or three years time whether this is worked or not" Complacency Value of the vaccine: social and personal motivations (COM-B: Opportunity/ Motivation) Some people were motivated to have the vaccine to bene t society and end the pandemic.
"I believe its [sic] a social responsibility to have the vaccine" "The vaccine is the only way to get out of this pandemic." For others, motivations were related to protecting family/ friends or personal bene ts.
"If you want to see family members or friends you need to have the vaccine to protect them, although I was initially against having the vaccine." "I am lucky that I have the support to arrange and access my appointment." "My carer arranged the appointment and the travel arrangements, all went smoothly." A minority experienced practical issues booking the appointment.
"Two systems working alongside each other hsve [sic] caused confusion… I received letters from two sources with con icting information. All was cleared up by a phone call to GP reception, who explained they were having a lot of this to help sort out."

"Letter to request I book an appointment on line. I was offered [location A], [location B], [location C], [location D]
and some others all miles from my home town. I rang telephone advice line to be told I would have to wait for my doctor or local NHS to contact me for a local appointment. No-one seemed concerned that I was shielding and very vulnerable. It was two weeks later that by telephone I was offered a local appointment." Some people were concerned that they had not been invited for a vaccine appointment yet despite being eligible.
"I was surprised to only just learn that as a stroke survivor, I am in group 6 for the vaccine rollout. Some people were disappointed in the lack of proactive information.
"After a TIA I thought my doctor would have contacted me to discuss which vaccine I should receive." "I have accessed general information on line but feel my GP surgery should inform its stroke patients with more personalised advice and information for individuals." Some people were frustrated with lack of access to their GP to discuss the vaccine. "I contacted my doctor to discuss my jab, but couldn't get an appointment because the surgery wasn't really interested in my concerns! No discussion, just a receptionist who said it was safe to have the vaccine! No reassurance for me at all." "The doctors have. Been [sic] really busy you don't feel like you can ring just because of concerns. But like l said l have so ma[n]y [sic] concerns." Some people felt there was a lack of information, in particular personalised information/ advice, information on risk of blood clots/ stroke and information for younger stroke/TIA patients.
"Due to my age when I research for information about people who had strokes/TIA it was all based on older population, I could bit nd information for my age group… I did try to do so much research but as I stated it was all based on over 50's." "I have researched about covid [sic] and l know that can give blood clots. There is such a lack of advice out there." A very small minority had physical barriers to accessing information.
"I struggle with information since my strokes hard to take it in an understand it." "Stroke affected vision -di cult to access websites." Knowledge about where stroke was on priority list (COM-B: Capability) Some people were unclear where stroke was on the vaccine priority list.
"As far as I am aware people who have had a stroke or TIA were not on a priority list." "The government website does not make it clear that stroke survivors should fall into group 6."

Principal ndings
Vaccine uptake for the rst dose was high: 87% had received the rst vaccine or had an appointment booked. However, many people expressed concerns around the safety of the vaccine (particularly risk of blood clots and stroke) and some were hesitant to have the second vaccine. For stroke/TIA patients, vaccine safety (con dence) is the overriding behavioural in uence on vaccine uptake. Most people had no di culty accessing the vaccine appointment; however, 8% had not been offered the vaccine despite being eligible (convenience). Societal and personal bene ts were motivations for vaccine uptake (complacency-value). There was uncertainty and lack of information about risk of COVID-19 related complications, speci cally for people who had a stroke/TIA (complacency-perceived personal risk). This is the rst study to explore stroke/TIA patients' perspective of the COVID-19 vaccine. Although descriptive in nature, our ndings enable us to begin to understand behavioural in uences on vaccine uptake speci c to stroke/TIA. However, a key limitation is that 96% of the sample are White; therefore, perspectives from other ethnic groups may not be represented in our ndings. This is particularly important as research has found greater vaccine hesitancy among people from some ethnic minority groups. (20) The survey was only available in English, which hinders participation from non-English language stroke/TIA patients. Furthermore, the survey was electronic and predominantly circulated through social media and email; therefore, bias may be introduced by digital inaccessibility.

Implications for clinicians and policymakers
Our ndings can be used to identify targets for behaviour change to improve vaccine uptake speci c to stroke/TIA patients (Table 3). Importantly, there is a need to increase trust in the safety of the vaccine (con dence). Fear of the vaccine causing blood clots and stroke could be diminished by provision of upto-date, accessible education/ information speci cally for stroke/TIA patients. For example, vaccine blood clot risk for stroke/TIA patients presented visually (such as infographics) and through illustrative analogies to contextualise information (such as "this equates to one person in a city the size of …"). This information should be co-produced with stroke/TIA patients and be available through trusted sources, such as government NHS websites. Furthermore, opportunities to discuss individual circumstances with trusted individuals, such as GPs or Stroke Association helplines, could be improved. Proactively targeting newly diagnosed stroke/TIA patients, in hospital or GP follow-up, provides an opportunity to intervene early to dispel misinformation about the vaccine causing their stroke/TIA and reassurance of safety of the second vaccine.
We identi ed a lack of understanding that stroke/ TIA patients have greater risks of complications from contracting COVID-19 (complacency). Therefore, education/ information provision to improve knowledge of personal risks related to COVID-19 could increase individuals' motivation to have the vaccine. A recent study found provision of information on personal bene t reduced vaccine hesitancy to a greater extent for people who are strongly hesitant, compared to provision of information on collective bene ts. (29) Other potential intervention targets include "persuasion", such as promoting social responsibility and personal gain motivators, and "modelling", such as positive publicity campaigns of stroke/TIA patients having the vaccine. Information should use lay language, be coproduced with patients and be presented visually (e.g. infographics) and using illustrative analogies to contextualise information.
Information should be easily available, such as on trusted NHS government websites.
Information should be adapted to accommodate accessibility considerations (e.g. visual problems) and stroke-related impairments (e.g. cognitive problems).
Empower families/ carers to support people with stroke with their information needs.

Education
Initial information provision in the acute setting is crucial and individual concerns/ questions can be discussed. Proactively target newly diagnosed stroke/TIA patients to dispel misinformation about their stroke being related to the vaccine and to promote uptake of the second vaccine. A summary of this information should be included in the discharge letter.

Education
Educate healthcare providers and vaccinators to provide information to address vaccine safety concerns, particularly regarding blood clot and stroke risk -i.e. more than the top line message 'the vaccine is safe'. Concerns should be acknowledged and not dismissed.
As trusted information sources, healthcare providers should have knowledge of where to access up-to-date, evidence-based information.
Environmental restructuring Improve access to personalised advice, support and reassurance from trusted individuals, such as GPs or the Stroke Association helpline.

Unanswered questions and future research
We identi ed some hesitancy regarding the second vaccine from stroke/TIA patients who already received their rst dose. Further research is required to understand if this hesitancy resulted in missed vaccines, the extent of this problem and how to prevent missed second vaccines. We also identi ed the need for generation of data about the vaccine and risk of stroke/blood clots speci cally for the stroke/TIA population. Ethnic minority groups are vastly under-represented in our survey; therefore, research which purposively samples minority groups is essential to understand in uences on vaccine uptake speci cally for stroke/TIA patients within these minority groups. In the UK, the government is planning a roll out of booster vaccines, starting with the most vulnerable. Further research to understand stroke/TIA patients' perspectives and understanding of booster vaccines is an important continuation of our research to inform strategies to improve vaccine uptake.

Conclusion
People who experience stroke/TIA are a clinically vulnerable group, at high risk of severe COVID-19. Despite high uptake of the rst vaccine, many have legitimate concerns and information needs that should be addressed, in particular regarding risk of blood clots and strokes. Provision of this information to stroke/TIA patients is important to avoid 'vaccine hesitancy' in this patient group. Our ndings can be used to identify targets for behaviour change to improve vaccine uptake speci c to stroke/TIA patients, in particular increase trust in the vaccine's safety (con dence) and improve understanding of the greater risks of complications from contracting COVID-19 (complacency).

List Of Abbreviations
Figures Figure 1 Survey responses to questions about the vaccine's safety and side effects (n=364, *n= 297, ^n=290, n=298).

Figure 2
Survey responses to questions about beliefs and social in uences (n=357).

Figure 3
Survey responses to questions about access to the vaccine appointment (n=360).

Figure 4
Survey responses to questions about knowledge and understanding of the vaccine (n=365).

Figure 5
Sources information about the vaccine for people who have had a stroke/TIA.

Supplementary Files
This is a list of supplementary les associated with this preprint. Click to download. Appendix1.pdf