Experiences of carers of youth, adult children and spouses with ME/CFS 2022 Baken et al

Abstract

Objectives
The debilitating nature of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) means that family members often take on a caring role. This study compared the experiences of people caring for three groups: youth, young adults, spouses.

Methods
An opportunistic sample of 36 carers completed an online survey of open-ended questions asking about their experiences. Thematic analysis was used to consider the three sets of responses separately and Thematic Comparison was used to identify points of connection and disconnection across the sets.

Results
The themes identified were very similar to those identified in past studies. Two super-ordinate themes were identified: “Lack of knowledge and understanding” and “Holistic Impact”. Though most sub-ordinate themes were evident across all three groups, important differences were found. The sub-ordinate themes “Caring Blindly”, “Emotional and physical health cost”, and “Impact on the whole family” were more evident amongst carers of youth while the theme “Worry for the future” was more evident from carers of young adults and spouses.

Discussion
Differences seemed to be related to both the time since diagnosis and the life stage. A longitudinal study would help to understand how carer experiences change over the life course of caring for someone with ME/CFS.

Paywall, https://journals.sagepub.com/doi/10.1177/17423953221121696

 

I can't see the full text and am cautious with this area anyway.

I know that the carers mentioned and seen most are those who are good, and find it understandable but a shame we rarely hear in articles or whatever of people who mistreated under old ideologies for a good length of time (which I suspect is way more common than we think) at least or 'have their own views' (denial, this gets in my way as much as 'will help').

The caree will find it hard to do this honestly either unless some enlightenment and incredibly amount of closure has happened, but even then how risky to out the history of things.

A methodology would need to be found for absolute anonymity, with absolutely no risk (not some approx reassurance 'we don't use names anyway'), and smart recruitment to get anywhere near the real picture. You'd also need a representative survey I suspect to see how many of the entire network people have left - probably over a retrospective of a long time (relationships break down). I suspect there is a bit of all or nothing. Given the populus fallacy/peer pressure.

SO aren't such studies basically bound to only either the best of situations or those who fib or gloss over certain bits? Making this very fuzzy and because of any guardedness or balance towards very close people quite different to what might be going on.

 

I'm not sure that the underlying research philosophy of this type of study allows doing things very differently. Although not stated this seems to be a piece of 'qualitative research', indicated by use of the term "opportunistic sample". By its very nature qualitative research is fuzzy, but it can be useful where quantitative research isn't practicable or would produce highly partial data. There are long running debates about qualitative versus quantitative but qualitative researchers by and large do not claim any supremacy of method over their quantitative cousins, only that their work allows some insight where quantitative investigation isn't feasible.

There's very strong social and economic pressure to support the notion of good in-family care-giving and most studies in this area focus on how to 'help the family', frequently presented as a social justice concern but with the underlying reality that it's mostly about cost. I'm not sure there's much interest in the actuality of the lives of people with chronic illnesses and their families. There seems to be a lot of research concerning caring for a brain injured partner, cancer survival in families and caring for dementia - not sure there's much helpful there for ME/CFS but easily found on Google Scholar.

 

My point is that with the PR from BPS ideology regarding CFS this type of research is finding a minority to pretend that is what happens. Unless this research has a lot of people talking about forcing their caree to do things by punishment and reward and cajoling up until very recently it doesn't seem accurately representative to me.

Some might have lovely, understanding and non-ignorant supporters around them. Unless even within this they talk about wake-up call moments where they realised that attitude they were taught to impose on those with CFS made them more ill then I don't believe this even captures that.

How could someone left brutally disabled by such treatment, now totally dependent on those carers feel safe telling that story in such research - too many implications there? And so the design perhaps closed-down what the narrative could be, by not discussing safety measures about how such likely topics could be discussed safely. I'm sure the author didn't realise it, but 'opportunistic sample' wouldn't cut it to me as if 'all good and well' stories then it's something very different more akin to 'best possible scenario' (with bad bits excluded).

How many of us got made more disabled by being abandoned, or bullied first and then when made more disabled abandoned as 'broken' and our fault, or 'broken by the treatment' but the carer realising it was that and not 'us' enough you hang on by your fingernails to survive as long as 'noone mentions the war', and so on? We need that first to work out what we are actually describing, if the majority have no carer or there is some history going on the methodology needs to be set up to make it possible this is covered.

So yes I have an issue of the labelling of these things accurately and why the quant isn't done first to show this is a rose-tinted insight into the maybe 'best case 1%' depending on what clever methods and protections they can talk about to ensure the non rose-tinted could be discussed. I may be surprised and somehow all this is in there.

But I worry it's like someone taking pics of the staged bit at the start of a works xmas party with a write-up of the agenda and highlights for a newsletter for your employer's website (vs the gossip and real pics and rumours on watsapp) as the basis of research into what work xmas do's are really like. People need to know everyone is talking about the fights and snogs (not that any I've been to were like that), how boring the bosses speech or song was, how they'd actually rather have been working a normal day in the office, know those involved with them and their bosses are going to be OK with those being mentioned, and exactly how anonymous things can really be before they talk reality?

 

I've only seen the abstract plus a short summary sent to study participant carers. I haven't been able to access the paper itself, but if someone would like to discreetly 'leak' it to me by DM...

Based on the abstract and participant summary this is a qualitative paper which simply documents the experience of a self-selected group of carers.

In many ways the paper just states the bleeding obvious, i.e. that caring for a pwME is tough in all the ways caring for anyone with any serious illness or disability is tough, with the added dimension of having to fight disbelief and outdated information about ME and the lack of support arising from that.

Nothing that would surprise any of us here but it is good to have all this documented in published form.

@bobbler - What you are looking for is a serious issue but one which requires a separate study. The study discussed here is limited in scope to looking at the perspective of carers. It's not designed to address the experience of carees. A study into abuse or neglect by carers would need to interview the carees and, where available, independent observers with insight into the carer-caree relationship. It would be a difficult matter to study safely but an important one.

Another thing that would be interesting to look at in this area - and from the limited information I have I don't think this was asked about in the present study - is how carers navigate between the often contradictory messages they receive from health professionals on the one hand and patient organisations on the other. How much doubt do they experience about the nature of ME as a result of the mixed messages? How does the doubt affect the relationship with their caree? What, if anything, causes them to believe one type of messaging or another? Etc.

 

You're right that this study probably just states the obvious, but sometimes getting into a scientific paper is the hard part.

Very good idea for future research. To what extent are carers swayed by BPS beliefs? I wonder if it depends on how long the person with ME was sick, or their social class (which might let them see better doctors). I was diagnosed 6 months ago, so everything Mom and I know about ME is modern and from a 100% biomedical perspective. Long Covid helped as well. I actually viewed LC as a serious illness before I knew I had ME.