PHD Project: A mixed-methods investigation of the role of illness perceptions in endometriosis, 2020 - 2023

Abstract

Endometriosis is a gynaecological condition whereby endometrial tissue grows outside the uterus. Symptoms include chronic pelvic pain, acute period-related pain and difficulty conceiving (Denny & Mann, 2007). Affected women have higher incidences of depression and anxiety than the general population (Pope et al., 2015), however the cause of this is unknown. This project aims to examine the role of illness perceptions on endometriosis related pain severity and quality of life (QoL). Illness perceptions are the cognitive representations individuals hold about their diagnosis, including beliefs of controllability and consequences of illness. These perceptions influence behavioural, social and health outcomes in several chronic conditions, however have not been researched within an endometriosis context.

No research has examined the role of illness perceptions on endometriosis related pain and QoL. Leventhal's (1992) self-regulation model theorises that cognitive representations, such as beliefs about the cause, controllability and consequences of an illness diagnosis, may shape behavioural responses and coping style. Illness perceptions are well studied in chronic illness research, and are important predictors of psychological wellbeing and functioning in fibromyalgia (van Wilgen et al., 2008), Parkinson's disease (Hurt et al., 2013) and chronic fatigue syndrome (Moss-Morris, Petrie & Weinman, 1996). In qualitative research of endometriosis, controllability and perceived consequences of a diagnosis appear to influence QoL in affected women (Jones, Jenkinson & Kennedy, 2004), indicating that illness perceptions are likely to modify psychological wellbeing. Thus, investigating the role of illness perceptions in the current context has the clear potential to facilitate understanding of the mechanisms underlying endometriosis symptomology.

This project aims to establish an understanding of the role of illness perceptions on QoL, depression, anxiety and pain severity. A longitudinal, mixed methods approach will be adopted to obtain a holistic account of the experience of women with endometriosis and the beliefs they hold about their condition. The PhD project has three key aims:
(i) Examine the trajectory of psychological symptoms in women diagnosed with endometriosis within the last year
(ii) Use a self-regulatory framework to examine the role of illness perceptions in predicting outcomes in patients at 6 and 12-month follow-up
(iii) Undertake an in-depth qualitative examination of patients' lived experiences with endometriosis
The key research question to be addressed is: what is the role of illness perceptions in predicting outcomes in women with endometriosis?

https://gtr.ukri.org/projects?ref=studentship-2434262

 

It can.take years to be diagnosed. Gaslighting is common. Further gynaecology issues are likely to be dismissed.

" illness perceptions " by this point may have to be recorded in French ( sarcasm for expletive language)

 

*expletives*

 

That looks like poor drafting. Is that what illness perceptions "are", or is it the way in which they are defined for the purposes of the study? That looks to be one or two stages removed from the ways in which people are likely to interpret "illness perceptions".

They are entitled to define the words as they wish, but not to say "are".

 

“illness perceptions”?

why use these words, just why????



NOTE: I have never personally been affected by Endometriosis, but I know a lot of women who have/are and I have empathy !

 

There are many, many concepts in alternative medicine that are far less woo than "illness perception". It doesn't stand for anything, it's just fluffy rhetoric that is meant to be "explored" endlessly. This is completely pointless.

 

I couldnt read past the first few sentences. They reveal themselves immediately.

Well im sorry but if you are seriously so utterly blind, so divorced from all empathy & imagination that you're unable to see, that far from the cause for higher incidences of depression being 'unknown', you have actually just written the very obvious & predictable cause in your previous sentence (ie "chronic pelvic pain, acute period-related pain and difficulty conceiving"). If you genuinely cannot see those things are an obvious cause of increased worry & very low mood, then, well, i guess it's possible you might have a neurological difference that makes you lack empathy, but regardless of whether its that or just being completely dense, I'd suggest you're in the wrong job.

Being in constant pain, it affecting your life massively, it giving you things to deal with and manage that healthy people never even have to think about, being prevented from having kids... it is natural and appropriate to feel anxious, low and pissed off, and to suggest otherwise is psychologically, emotionally abusive.

Wow.

Get ready, all of you who have a medical condition of any kind, for any reason. Because they are coming for you. It's no longer the creep of BPS victim blaming, patient blaming, it's a flipping tsunami of it now and it's gaining momentum & heading for everyone now. Now they've tested it on us, they're coming for the rest of you.

Before too long they'll be telling you that your thoughts are causing the endometrial tissue to grow elsewhere because you believe it does.


Edited to add: It hadn't registered with me initially that this was a student's work. Have therefore edited my post very slightly.
And if the researcher does happen to read this...
I'm sorry if i seem harsh, i'm sure you believe your motive is to help people with endometriosis & advance understanding & i respect that. But living with the onslaught of continuously being told that you are to blame for your own suffering because your thoughts/feelings/behaviour are wrong, is profoundly psychologically harmful. Please reconsider what you're doing, lest you become part of that harm.

 

It is straight from a comedy script.

 

I think this PhD project is a horrid insult to any woman with endometriosis and to women in general. The stupidity and insensitivity of its concepts astound me. How can this possibly have gotten approval? To what greater depths can psychology sink? It makes me fear for the future of medicine when I see young psychologists being inundated with this kind of thinking which further perpetuates and reinforces harmful BPS concepts. Shame on all involved.

 

I've only just realised this is an article/paper written by a student who is hoping to get a PhD. Not that that makes it acceptable. In some ways it makes it worse. It makes it clear that (presumably) young students are getting drilled in switching cause and effect, how not to have any empathy, how to disbelieve patients, and how to torture patients by increasing the risks that any biomedical research will struggle even more for funding than it does already.

 

I have a friend who has endometriosis.
When she complained of " abnormal" pain for her she was gaslit, dismissed and basically told to just smile and get on with things.
She focused on her job and managed to complete a gruelling microsoft challenge and six sigma training. All the while in greater pain.

By the time she got a scan they found a tumour almost the size of a tennis ball.
Very luckily for her she was one of the 10% for whom these are benign.

Illness perception was spot on

 

When I complained of intolerable pain I was told that all I needed to do was get pregnant. I was also told not to wait until we had a bigger TV or a second car, but to try now and this would cure my pain. I always found this kind of comment insulting and a way of trivialising what was wrong with me. And when such comments are made they are often said with a broad grin on the doctor's face.

 

Nah. Good comedy is smart. This is more like bad slapstick, where the "script" is just a bunch of figures and some "KABOOM" and "BLATZA!" added here and there. It's all cue cards and "Laugh now" signs for an audience that would applaud anything.

 

Awful.

I dont have endo but had a similar experience of excruciating pain being dismissed & told 'nothing wrong with you' - by the time it was actually investigated (a year later & only because i was cajoled by friend into getting a second opinion), i had a cyst the size of a grapefruit. Lucky it was a benign cyst. But it could've been much worse, & as it was i still lost an ovary.

That was 20yrs ago, but I reckon if that happened now i'd have just been sent for CBT to alter my 'perceptions'... and who knows how big it would have had to get before it was discovered.

 

My daughter was doing her nursing training in an orthopaedic clinic.

One thirtyish woman had fallen and been x rayed but nothing could be seen. She was told everything was fine, probably just strain from her fall.

She phoned the next day and said the pain as worse but was reassured but two days later she showed up at the clinic demanding that something be done as the pain was so bad. She was x rayed and had a three inch break at the top of her leg.

The consultant was incensed she had been fobbed off, so much that he shouted at the doctors while my daughter was there. He said that adult women do not complain about pain when nothing is wrong and it must be investigated. He turned to her and said that pain was always a warning and must not be ignored.

Aaah, the olden days!

 

I've skimmed about 2 lines of this --- I'm struck how the sham/scam works --- pick something that cannot be objectively measured (pain in this case), then use a psychological intervention and (important bit) use subjective outcome criteria --- that way you can write some subjective psychological crap and hey presto your part of the club --- minted/made for life ---- just keep chucking the crap out.

What needs to happen is that this gets challenged when Minister X funds this as treatment/care --- make them accountable for their decisions.

 

Sadly true
slightly(?) tangential - we have Diddo Harding appointed interim chief of new health institute ... well if you can't be part of the solution then make money from the problem

the problem we have, is that we have a perception that this is about health --- it isn't