Engaging with severly affected - surveys etc ( PLP survey coming up)

Advocacy work can involve surveys - online/ telephone/ hard copy.
Much of the time, those who are most severly affected can find it difficult to engage with this unless a fanily member/ carer can assist them- some may struggle to have this assistance.

The PLP will feature a survey and there are some examples/ links on their website for different organisations

Current surveys | James Lind Alliance (nihr.ac.uk)
Priority Setting Partnership | Stroke Association - one of the current surveys

With COVID19 there is less option for face to face interviews as has happened with some previous surveys ( such as dementia)


This is an opportunity to potentially direct research , so important for all, but perhaps a key opportunity for those whose voice may be heard the least in this kind of scenario
Suggestions for research take in areas which may not be important to clinicians, but which may be very important for those with the condition- the top 10 for various conditions previously involved can be accessed here for examples

eg
Top 10s of priorities for research | James Lind Alliance (nihr.ac.uk)

So the question is - for those who are severely affected - how can survey format be tailored to enable you to engage?

eg

1. telephone option ( may be problematic given working memory issues identified on another thread)
2. save and return with a long timeframe ( 6 weeks?) to complete
3. having paper copies wiht a similar long retrun period
4. font size
5. colours
6. spoken text
7. compatability for various types of software ( speech / text readers etc)
8. ?????

@MEMarge is the rep from S4ME and it may be useful for her to have some input direct from those affected for this ??

 

In past work on inclusive access, we found that that enabling as many different ways to participate as possible usually widens the group you manage to reach.

So for instance, where we decided on an online questionnaire, we also offered a paper version sent by post. In this case, it might also be feasible to enable carers/family members who happen to have a printer the option to run it out on paper (meaning there's no need to bring an illuminated screen into the patient's room), go through it with them at their own pace, and then transfer their responses into the online form on their behalf.

Obviously, the list of options does need input from those patients...which is where I ought to shut up!