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 1: Demographic characteristics of survey respondents (n=377)
|
|
N (%)
|
Diagnosis
|
Stroke
|
253 (67.1)
|
|
TIA
|
67 (17.8)
|
|
Both
|
47 (12.5)
|
|
Unsure
|
10 (2.7)
|
Gender
|
Male
|
163 (43.2)
|
|
Female
|
213 (56.5)
|
|
Non-binary
|
1 (0.3)
|
Age
|
18 - 25 years
|
3 (0.8)
|
|
26 - 35 years
|
7 (1.9)
|
|
36 - 45 years
|
30 (8.0)
|
|
46 - 55 years
|
95 (25.2)
|
|
56 - 65 years
|
130 (34.5)
|
|
66 - 75 years
|
73 (19.4)
|
|
76 - 85 years
|
38 (10.1)
|
|
≥86 years
|
1 (0.3)
|
Ethnicity
|
White
|
362 (96.0)
|
|
Mixed/ multiple ethic groups
|
3 (0.8)
|
|
Asian/ Asian British
|
5 (1.3)
|
|
Black/ African/ Caribbean/ Black British
|
5 (1.3)
|
|
Prefer not to say
|
2 (0.5)
|
Highest level of education
|
No formal qualification
|
36 (9.6)
|
|
GCSE / O-Levels / CSE / Foundation Diploma
|
100 (26.5)
|
|
Apprenticeship
|
15 (4.0)
|
|
AS / A-Levels / BTEC / Advanced NVQs
|
72 (19.1)
|
|
Degree (e.g. BA/BSc)
|
92 (24.4)
|
|
Higher Degree (e.g. MSc/PhD)
|
36 (9.6)
|
|
Other
|
26 (6.9)
|
Employment status
|
Employed- full time
|
80 (21.2)
|
|
Employed- part time
|
37 (9.8)
|
|
Furloughed- full time
|
6 (1.6)
|
|
Furloughed- part time
|
6 (1.6)
|
|
Volunteer
|
13 (3.4)
|
|
Housewife/ househusband
|
5 (1.3)
|
|
Unemployed
|
46 (12.2)
|
|
Retired
|
162 (43.0)
|
|
Student
|
4 (1.1)
|
|
Other
|
18 (4.8)
|
Experienced COVID-19
|
Yes
|
44 (11.7)
|
|
No
|
297 (78.8)
|
|
Unsure
|
36 (9.6)
|
Quantitative data
Vaccine uptake
87% (328/377) either had received the first/ second vaccine or had an appointment booked for vaccine (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 definitely or very likely to accept; 3 were likely to accept; and 4 were unlikely or very unlikely to accept the vaccine.
Table 2: Vaccine uptake among survey respondents (n=377)
|
N (%)
|
Yes- first dose
|
307 (81.4)
|
Yes- first and second dose
|
12 (3.2)
|
No- I’ve not been offered it yet
|
30 (8.0)
|
No- But booked to have vaccine
|
9 (2.4)
|
No- I declined the vaccine
|
7 (1.9)
|
No- I’ve been offer it but not taken up yet
|
11 (2.9)
|
No- Other
|
1 (0.3)
|
Perspectives of the vaccine
Side effects and safety
Figure 1 summarises survey responses to questions about the vaccine’s safety and side effects. Around a third of respondents strongly agree/ agree that they are concerned about:
- Side effects of the vaccine: 36.0% (131/364)
- The vaccine increasing their stroke risk: 34.1% (124/364)
- Safety of the vaccine: 31.6% (115/364)
- The vaccine affecting blood thinning medication: 29.9% (89/298)
- How new the vaccine is: 29.1% (106/364).
Beliefs and social influences
Figure 2 summarises survey responses to questions about the beliefs and social influences. The vast majority of the sample strongly agree/ agree that:
- Having the vaccine is the ‘right thing to do’: 91.8% (328/357)
- The vaccine will protect against COVID-19: 87.1% (311/357)
- The vaccine will help reduce spread of COVID-19: 85.1% (304/357).
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 difficulty 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 satisfied 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 specifically for stroke/TIA patients (47.5%; 169/356). Only a third (33.2%: 121/365) strongly agree/ agree that they were satisfied 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).
Perceptions of COVID-19
Figure 6 summarises survey responses to questions about perceptions of COVID-19. 71.5% (254/355) strongly agree/ agree that they are likely to pass COVID-19 on to other people if they were to get it. 36.9% (131/355) strongly agree/ agree that they are at high risk of getting COVID-19. Over half strongly agree/ agree that they will get very sick if they get COVID-19 (57.5%; 204/355) as well as being at greater risk of COVID-19 related complications due to their stroke/TIA (54.4%; 193/355). A third strongly agree/ agree that getting COVID-19 would increase their risk of stroke/TIA: 35.8% (127/355).
Qualitative data
Confidence
Blood clots and stroke risk (COM-B: Motivation)
Many people expressed serious concerns about blood clots and the vaccine causing a stroke/TIA (64 free text comments).
Media attention around the AstraZeneca vaccine and risk of blood clots caused many people to be anxious and hesitant about the vaccine. In many cases, people had their first vaccine before the media attention and were hesitant to have the second vaccine.
“Having had dose 1 of AstraZeneca vaccine prior to blood clot issues being reported I am very concerned as to the risks of my second vaccine. Very concerned when I previously had no hesitancy and am actually a vaccinator.”
“Still unsure about the safety issues regarding the AstraZeneca vaccine as regards blood clots in recovering stroke victims. I am unsure about taking my second jab of the AstraZeneca vaccine.”
Some people experienced a stroke/TIA shortly after having the first vaccine and believed the vaccine caused their stroke/TIA.
“I had a mini stroke 1 week after receiving first dose … I refuse the second dose of Astrazenica [sic] … I am not being another death statistic.”
“17 days after having first vaccine AstraZeneca I had a TIA I am very worried about getting second jab. I'm almost certain it caused me to have a TIA.”
Side effects and safety (COM-B: Motivation)
Some people were worried about vaccine side effects after having experienced severe side effects themselves or hearing about potential side effects.
“The vaccine first dose really put back my recovery by about 3 plus weeks increase in headaches and vertigo. I don't know whether this means I should or shd [sic] not have second dose.”
“I'm worried about second dose of vaccine because feeling unwell after first dose.”
Some concerns were related to comorbidities or medication.
“Got my message from NHS vaccine but was uncertain of how my prescription medication would effect [sic] me having it.”
“My other concerns were I was worried about my other health conditions and medication interfere with the vaccine.”
Other people’s concerns related to unknown long-term side effects. These concerns were often related to the “newness” of the vaccine.
“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/flu-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-specified 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 flu 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 unspecified concerns.
“I cancelled my first date because I was worried about having it [vaccine].”
“Unsure whether to have it [vaccine].”
Trust/ mistrust in the vaccine’s effectiveness (COM-B: Capability)
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 benefit 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 benefits.
“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.”
“Vaccine is my only hope of getting outside.”
A very small minority voiced concerns about potential government-imposed restrictions for people who refuse the vaccine.
“I should be able to live my life fully if I decline it. Too many restrictions being put in place if I do not have it.”
“I think people have the right to take the vaccine or not. I am concerned about the idea of stopping people getting jobs, going to restaurants, travelling etc if they do not have the vaccine.”
Perceived personal risk: Knowledge of COVID risk related to stroke/TIA (COM-B: Capability/ Motivation)
There was uncertainty about risk of COVID specifically for stroke/TIA patients.
“I have no idea how covid [sic] impacts on stroke survivors.”
“I don’t know if getting COVID will increase my chances of having another tia [sic].”
Some people conveyed concerns about COVID caused stroke/TIA or blood clots.
“I had covid [sic] in March 2020 and a tia [sic] in August. I believe covid [sic] was the cause of my tia [sic]. I do not have a family history of strokes.”
“I was not told to shield or take extra precautions, I took it on myself to do so after reading about blood clotting becoming an issue for seriously ill covid [sic] patients in the news.”
For some people, concerns about having COIVD were related to other comorbidities.
“I have conditions other than stroke which make me extra vulnerable to Covid [sic].”
“As i [sic] have other health issues aswell [sic] as stroke/TIA I was massively worried with how my body would cope with if i [sic] contracted covid [sic].”
Convenience
Accessing the appointment (COM-B: Capability/ Opportunity)
Most people had no issues and could access the appointment either independently or with support.
“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 conflicting 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. Disappointed to have not been invited for the vaccine by my GP.”
“I feel I got left out of Group 6 as others were being vaccinated before me in my area and younger than me.”
Accessing information (COM-B: Capability/ Opportunity)
Many people did not actively seek information about the vaccine.
“I didn't research having the vaccine. I believed that what ever [sic] the effects would be I would ultimately be in a better position for having it than I would of been not having it.”
“I Haven't searched, relied on my doctor and watching TV News Headlines.”
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 find 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 - difficult 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.”