Vaccine questionnaire- participants needed!

[CHarding31]

I am Kit, a postgraduate student at the Tizard Centre and an employee at EP Mencap in London.

I am carrying out a study exploring vaccination prevalence and experiences for adults with learning disabilities. The project has been approved by Tizard Ethics Committee.

We are looking at COVID-19 but other vaccines too. This article explains the purpose of the research:coral-living.co.uk/thinking...

I was wondering if you could possibly help distribute the anonymised online questionnaires amongst wilful participants? (Support workers and/ or the people you support). We would be really grateful!

We are hoping to have questionnaires completed by the end of May. There are three separate 10-15min questionnaires:

1. Adults with a learning disability via an easy read questionnaire (with assistance if needed) :

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OR

2. Carers supporting adults with a severe or profound learning disability (if they can’t complete with assistance). As proxy informants that know the person well, they would complete the questionnaire on the person's behalf:

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3. Adults from the general population to compare their results with people with learning disabilities at the end of the study:

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If you have any further questions, please contact me at [e-mail] or Dr Paraskevi Triantafyllopoulou (Vivi), my supervisor, at [e-mail]

Kindest regards,

Kit

[Michele1965]

Hi Kit I completed your survey 2 as a ft carer/mum to a young adult with SLD and Autism. It did not ask any questions on how or why he cannot participate in the vaccine process or how his disability is effectively excluding him from availing of protection against severe illness through no fault of his own. I was disappointed by the questions which were very few taking 2 mins to complete not 15 mins. May I ask what purpose the information gathering is going to serve, if any, to supporting the SLD community to access vaccines as we continue as a society to have them part of our safeguarding. Many thanks.

[SpeedyH in reply to Michele1965]

Hi Michelle. These were my thoughts exactly and I abandoned filling in the survey. I wonder if it might be an idea to email feedback to the supervisor mentioned in the post. It seems a very low quality survey for Post graduate level study. The question of vaccinations really needs to be addressed for people with LD so it is a shame this survey is not more pertinent. We only managed to vaccinate our son by the skin of our teeth using sedation. He has the flu vaccine by nasal spray and misses out on all the other other routine jabs. Eighteen months ago, when the vaccinations started to roll out, the dept of health said there were aware that a nasal Covid vaccine was needed and that trials were underway at UCL and would report in the summer 2021. Of course this never happened. A professor at Lancaster University has developed a nasal covid vaccine but has been unable to secure grant funding to bring it to clinical trial. It isn’t politically beneficial to spend money on this I suppose, not a brownie-point winner! The benefits of a nasal vaccination are huge - for people who cannot have injections but also in third world countries as the level of training required to administer a nasal spray is minimal.

[CHarding31 in reply to SpeedyH]

Hi guys,

Thank you for taking the time to go over the survey and your feedback is really valuable.

This is the first time I am conducting an empirical dissertation so there are clear limitations in my survey that I will raise with my supervisor during supervision. I am aware of this and I hope we can improve the quality of the content within the surveys.

As there is no study exploring first-hand the views and experiences of adults with LD regarding vaccinations, we have created an easy read questionnaire. The Ethics Committee requires certain criteria which unfortunately at times can make the surveys less accessible and user-friendly. This is only an anchor study attempting to understand the vaccine prevalence levels in adults with LDs whilst comparing the data with a sample from the general population.

Our research also hopes to uncover whether reasonable adjustments are being implemented and are aligned with the espoused direction of policy. The questions are hence very simple and are collecting quantitive data on experiences and processes.

There are of course plenty of other important issues that need to be explored in further quantitative and qualitative research - as well as solutions ( the nasal vaccine could benefit adults with needle fear in the dataset). Despite the limitations, I would really appreciate it if you could complete this survey.

If you have any questions please feel free to contact my supervisor Dr Paraskevi Triantafyllopoulou (Vivi) at [e-mail].

Best wishes,

Kit

[Michele1965]

Data is readily available from myriad sources on vaccine prevalence in the SLD community. Reasons for lack of uptake have been identified, expected, and raised with frequency and concern from those within the community and those advocating for their number. As SpeedyH notes, there is apparent apathy/ lack of rigorous exploration to find alternative methods of giving the vaccine to marginalised communities that is creating the greatest concern for our most vulnerable people. Focus on developing a way forward to change this landscape by showing and highlighting that by not attending to dismantling hurdles faced is failing to address rates of higher mortality would be very valuable. Questionnaires that actively seek to listen, understand and implement proactively to purposefully change the chronic reality for the SLD community of low uptake of vaccines should I feel, be spearheading research. The documented consequences of lack of accessible vaccines for so many in this community makes this pressing.

[CHarding31]

Do you have a research paper on immunisation prevalence (multiple vaccines) in the LD community in adults? I have scoped the research and found nothing but it would be great if you have something. Either way, your own personal sources would be really valuable information for this research study, despite its limitations. All the issues you address are important and that is something we are attempting to uncover not only in this study but in further more detailed studies at Tizard. These questionnaires are attempting to 'listen and understand ' as I have found no research that has included the views and experiences of adults with LD regarding vaccinations. If their experiences are voiced, this will help organisations understand what changes can be made to align practice with policy. There are further issues that need to be explored such as the lack of reasonable adjustments being made and the lack of specific training amongst nurses and GPs. If you have any more valuable information please contact my supervisor as she is hoping to conduct 3 years of research on vaccinations within the LD community.