Open impact of chronic fatigue syndrome CFS/ ME on identity construction among young adults

[NelliePledge]

Yeah I was involved in commissioning a couple of pieces of qualitative research for the department I worked for to find out real people’s experiences of complaining about dealing with us, and also asking a range of disabled people what their issues were with the service we were or weren’t offering.

Eta. Nobody from the department was involved in the interviews or groups it was made quite clear that the researchers weren’t civil servants.

 

[Jonathan Edwards]

No one in their right minds is using qualitative research to settle issues of cause and effect--I mean, maybe they're trying to, but that's not a proper use of it, and attacking it for something it's not designed to do doesn't make a lot of sense to me.

The point I was making is that in none of these valid situations is the term 'qualitative research' ever used. The term was developed sometime around thirty years ago specifically to justify research that was trying to prove some sort of cause and effect but wasn't up to the job. We constantly hear of 'qualitative research' in psychology and social science and it is always designed to extract 'themes'. Themes are speculated conclusions that have to be called themes because anyone can see that they are not justified as conclusions because there is no control over sampling or the bias of how questions were posed and so on.

What I think it may boil down to is that the 'quantitative' bit of science that was oversimplified when Lord Kelvin saidy that if you cannot measure something it is of no scientific value has more to do with ensuring that data are representative, and that inevitably involves some form of quantitation if only of the sampling method.

I agree that it is worth enquiring more deeply and finding out new details. It is not that you then need to go on to measure stuff but that you have to make sure that the details you have discovered are representative and not confabulations by people telling you what you want to here. One of the first things you learn as a doctor is that unless you deliberately counter it, most of what patients tell you will be what they think you want to hear - for perfectly laudable social and other reasons. You have to constantly tell people that you want to hear things in their own words rather than the word they think you would like them to use. Psychologists seem to get this backwards. They want to create a language of 'collaboration' - they actually call it that - in which the patient and therapist construct (yes again, construct) this narrative about what the persons thoughts are.

Most people with ME/CFS are sensible enough to see through this thank god (with a small g).

 

[dave30th]

The point I was making is that in none of these valid situations is the term 'qualitative research' ever used.

This might be the case in UK--I don't know. I can say with certainty that in public health in the US--at least as taught at Berkeley--the term "qualitative research" is not presented in any way as a method of drawing firm conclusions about cause and effect. In Uganda, I did qualitative research that involved in-depth interviews with lots of HIV patients about various things that might interfere with their ability to adhere to medication--transportation costs, sexual dynamics, societal pressures, needing to farm, needing to feed the kids, needing to hide their HIV status, whatever.

Yes, we found "themes." No, we didn't present them as representative of everyone but as issues that were worth examining further in quantitative studies. Without the qualitative research--which is basically, let's ask as many people as we can about these things--many nuances would remain unknown. That's not a defense of bad qualitative research.

thank god (with a small g).

I very much agree with the small "g."

 

[tuppence]

I find a lot of Wisdom in the Native American Proverb:

‘Never judge another man (person) until you have walked a mile in his (or her) moccasins.’

Asking someone to tell you what it is like to walk in their moccasins, comes a very far away second best as you inevitably interpret their replies from walking in your own moccasins. You can reflect back to a person what you think it is like for them to be in their moccasins and even how you think they might be able to walk a bit better, but only the moccasin walker can choose that which is right for them.

I am all for trying to understand (place) where I think people are as it helps me respond with compassion and I hope with respect for the others autonomy.

This I think is very different from simply ‘judging’ what I think would be right for the other person.

 

[dave30th]

I think it's also possible that different disciplines have different views on this. Medicine and psychology are more concerned with individuals, so maybe, as @Jonathan Edwards suggests, non-quantitative research in those fields is more likely to be looking for causes of individual poor health and to then lead to blaming-the-person approaches, as seems to be the case with psych research into ME/CFS.

Public health is more concerned with population-level health and structural barriers that create challenges. So qualitative research in public health can shed light on those structural or societal barriers. If you find out, hey, everyone we talk to has no money to get to the clinic to get their meds, and that seems to be one possible reason for poor adherence, you might then consider adding a small transportation stipend when you provide the medications. Or you might then consider a mobile service closer to where people live. So qualitative research can be useful in providing insight into what might be helpful in designing programs. Very different than finding a cause for someone's poor health.

 

[Jonathan Edwards]

I am sure that qualitative research, with a small qr, is important in all sorts of fields and what we used to call 'field studies'. I may be wrong but I still have a sneaking suspicion that the term Qualitative Research emerged as a defence against accusation of 'soft' studies in social sciences. It may then have become widely used to mean field studies within an evolving social science zeitgeist.