Ensuring severely affected can be heard

@Invisible Woman

I agree that we disagree on the point of backwards and forwards and that experienced questionnaire designers are not appropriate for PWME.

Part of that experience is to consider questions via other means as part of the design. It also involves targeting your audience...an example is tailoring design for children that have limited vocabulary and attention span? You need specialist scales and appropriate design. You have to consider your audience as I said earlier. That doesn’t change the question you want to ask though...just how you ask it. In this respect I think we are cross purposes and saying the same thing.

I believe the techniques are available to do this already if good design principles were applied. By applying these principles you ensure the data you create is meaningful and avoids bias. Part of that is to be unambiguous..that’s standard for all questions ...what we see in the trash research and charity pop surveys is not best practice...it’s garbage on all fronts whether you have ME or not.

I agree the experience of PWME is one of extremely poor questionnaire design and chronic manipulations of experimental bias.

if I could show you something decent questionnaire-wise I think you would see what I mean but I don’t have anything I can share right now easily (or much more typing left in me)..probably easier to write one from scratch ...happy to collaborate on this when I have the time etc.

 

I think, we'll have to.

Bottom line - it can be a slick as you like but as a severe ME patient who has had people deliberately try to use questionnaires to cause me harm - & I'm not exaggerating - denial of benefits, deliberately misinterpreting one thing to mean another to squeeze a person into a BPS shaped pigeon hole. If a questionnaire isn't acceptable to me, I won't be filling it in. i won't allow myself to add to the numbers of those being misrepresented.

This is not a piece of marketing, this is my life. Either gather data about me in a way that is acceptable to me, open, transparent and in a way I can manage, easily review and so on or don't gather data about me at all.

The focus should be about the patient and what is acceptable to the patient. Others may feel differently but I am wholly fed up of a system that seems to exist for the benefit of non patients and doesn't in any way accommodate me or my needs.

Edit - spelling

 

To be quite frank, the assumption that a researcher can eliminate bias by assuming that the respondent is generating the bias by their approach to answering the questionnaire (and therefore forcing respondents to answer questions in a predefined way), is one of the things that puts me off answering any survey in the first place. It is much more important for the researcher to be aware of their own biases and take these into account when analysing the respondents answers.

Edit: The first answer a respondent formulates is not necessarily the one that best reflects their lived reality, whether given verbally or as a written response.

 

The researchers presumably thought that using a facilitator who 'knew nothing about ME' would lead to more 'accurate', 'clean' and/or 'objective' data. This is a perfect example of how researchers assumptions can be dangerously wrong when they design their methodologies - you don't get 'cleaner' empirical data in qualitative research by trying to add in the standard approach of experimental psychology to qualitative psychological research methods.

 

I dont mind the option of a rating scale but i think there needs to be room for qualitative info so that if you want, you can add explanation. If the commenting box is optional, then those that find this too hard can leave it blank and those who dont find it easy to pick a number can explain why they have picked the number that they have chosen.
I agree that there should be some indication of the number of questions at the beginning, with the option to save and return and also to edit as you go. Standardised questionnaires such as depression scales can make it look like we have problems with mood - I wouldn’t mind filling them in if I could explain my answers.

 

I don’t think those things are mutually exclusive... both biases are important things to consider if we are to get meaningful data.

 

I understand ...I haven’t been attacked for my ME via questionnaires ... yet ...just in other ways as you know....so I get the strength of feeling.

I’m not severe either so I only have a small idea as to what that’s like ...it’s like many things you can only appreciate some things when you actually go through it yourself. This is a catch 22 though for any future study.

Chalder and her ilk have a lot to answer for.

 

Thanks, @Amw66, for flagging me in this thread. Figuring out how to include severe patients is critical. I find myself in agreement with many of the comments above, especially those of @Trish, @Simbindi, @lunarainbows, @Invisible Woman and @Daisybell.

My current problem is that I just can't get my brain to engage with any written material. I no longer am able to fill out forms. Someone else does it for me. I can talk on the phone for a few minutes with someone I know very well and with whom I have an easy relationship. It's astonishing to me that anyone could think that a severe patient could participate in a phone conference for 10 minutes, let alone for two hours.

Ironically, though, the phone would now be the best way for me to participate in any kind of survey, but under specific circumstances. Ideally, my DH or another person close to me would actually be on the phone, would read me the questions, and wait patiently for my answers which could then be communicated to the surveyor. I could do maybe four questions a day. Ideally, this could be done over several days at a time that I choose as a relatively "safe" time, i.e. a time when I can usually function at my maximum.

In my early years, I was moderately affected by ME. Now, from the vantage point of being severe, "moderate" seems like an altogether different universe.

 

Duh! Seems that I didn't think about the fact that a computer or paper would work as well, as long as someone else could deal with the futzy stuff.

 

Severely affected patients want to participate in research, but for our enthusiasm, many of us pay a price in pain, debility and cognitive dysfunction. I was one of the many who had to abandon the Action For ME survey on the NICE draft because it was too long. Here are my comments:

- Be open about risks. Surveys for ME patients should not tell patients there are no risks to participation. Any survey is going to trigger PEM/PESE in sufficiently severely affected patients. Participant information sheets should acknowledge that respondents may experience PESE if they exceed their energy envelope by participating, and should advise participants to desist from the survey if they have concerns.

- Welcome respondents taking breaks. It should be as easy as possible to leave the survey and come back to it, and the phrasing of the survey should emphasise and even encourage this with e.g. ‘you can stop this survey and return to it later as many times as you need’. Phrases like ‘this survey can be paused and returned to should you require a break’ should be avoided as they may suggest to respondents that taking a break is unusual or not ideal.

- Avoid compulsory questions. Make all questions optional unless they are truly essential in your research. Respondents should be able to skip over those which they find unmanageable within their energy levels. Avoiding compulsory questions also allows those who have completed part of a survey to submit what they have done if they don't think they will be well enough to finish it later.

- All questions to be viewable and simple. I'm an academic social scientist, and from my perspective, severely affected patients have to be able to view/click through the whole survey from the start so we can budget for the energy required to complete it. Making upcoming questions inaccessible makes energy management harder, and I don't see how that can be ethically justified with severe patients. A progress bar is not sufficient as we don't know how demanding future questions will be. If the argument is that the survey should lead respondents through some kind of cognitive process, then that is likely anyway to be too taxing for those with severe ME. Faced with hidden questions, a severely affected but determined patient may insert junk answers to view the whole survey, abandon it, and then fill it in another time once rested and recovered (so negating the survey design anyway) - at least that's what I do. There's no cheating or tricking severe ME: if your survey isn't extremely simple, you're either not getting severely affected patients, or you're causing their symptoms to flare.

- Anonymity where possible. ME patients may have particular reservations about sharing identifying information ("personal data" in GDPR-speak) given what many of us have experienced. If a survey has to collect respondent names etc., the reasons for doing so should be clearly explained, the list of researchers with access to personal data should be both public and as short as possible, and personal data should be destroyed as quickly as possible.

- Survey design feedback. All surveys should include a free-text box for respondent comment at the end to explain when questions are poorly designed.

Now off to rest until I recover from the flare caused by writing this.