Thesis Understanding Poorly Understood Chronic Illness: Lived Experiences, Healthcare Journeys, and Recommendations for Change, 2025, Woodville

Dolphin

Dolphin

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Full thesis can be downloaded here:

Citation​

Woodville, Natalie, Understanding Poorly Understood Chronic Illness: Lived Experiences, Healthcare Journeys, and Recommendations for Change, Trinity College Dublin, School of Psychology, Psychology, 2025

Abstract​

Chronic health conditions present a substantial and growing challenge for healthcare systems worldwide. While much work has focused on improving care for common chronic illnesses, a significant gap remains in addressing the unique needs of patients with poorly understood, "contested" or "unexplained" conditions and symptoms. Employing a multi-method, multi-phase design with Patient and Public Involvement (PPI) embedded throughout, the present research examined the experiences of individuals living with a range of such conditions in Ireland, with a particular focus on their personal journeys and experiences with healthcare.

Four studies were conducted over the four phases of research.

First, a systematic literature review of qualitative studies (N=143) concerning patient and clinician experiences of medically unexplained symptoms, Fibromyalgia (FM) and Myalgic Encephalomyelitis (ME)/ Chronic Fatigue Syndrome (CFS) highlighted a key challenge of sensemaking at the limits of biomedical knowledge, which contributes to disbelief, invalidation, and suboptimal clinical management. Overarchingly, the synthesis revealed a lack of person-centeredness in healthcare and pointed to the patient-clinician dynamic as a viable target for change.

Second, a cross-sectional, mixed-method online survey was conducted to explore the knowledge, understanding and perspectives on ME/CFS and FM among a sample of adults in Ireland (N=319). Findings highlighted stigma and invalidation as core challenges faced by individuals with these conditions. Most notably, responses revealed a troubling lack of confidence in the healthcare system among adults in Ireland, with pessimistic views of diagnosis and management, alongside negative appraisals of clinician knowledge and awareness of both ME/CFS and FM.

The third study, utilising the Life Grid interview method with a phenomenological focus, involved an in-depth exploration of the lived experiences and healthcare journeys of individuals (N=12) with various poorly understood conditions, including FM, Ehlers-Danlos Syndrome, Postural Tachycardia Syndrome, Functional Neurological Disorder, ME/CFS and Long-COVID among others. Results provided a multidimensional account of the transformative impact of chronic illness on individuals' lifeworlds and, combined with exploratory patient journey maps, illustrated how individuals in Ireland struggle to navigate a poorly coordinated, "broken" system that fails to provide adequate care. Participants' accounts of being disbelieved and silenced highlighted complex power dynamics that exist between service users and healthcare practitioners, with overall results suggesting that integrated, multi-disciplinary and patient-centered care is lacking.

Finally, with a view of identifying healthcare needs and developing actionable recommendations for change, five focus groups (N=24) were conducted in study four, eliciting patient views on targets for improvement in healthcare. PPI contributors were involved in the collaborative analysis of data collected, further ensuring that research outcomes were aligned with the needs and priorities of this population. A need for holistic and personalised approaches to care and the development of multidisciplinary clinics, networks and specialised diagnostic facilities were emphasised, as was a need for patient partnership in research.

Overall the findings from this research reveal major gaps in care in the Irish healthcare system with two overarching implications: First, the research provides compelling evidence for a need to adopt an integrated, patient-centered model of healthcare delivery; and second, it highlights the need for meaningful, sustained patient and public engagement in research and healthcare design.

Description​

APPROVED

URI​

https://www.tara.tcd.ie/handle/2262/111887

Collections​

Trinity College Dublin Theses & Dissertations
Psychology (Theses and Dissertations)

Keywords​

Patient and Public Involvement, Phenomenology, Co-Design, Fibromyalgia, Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, Ehlers Danlos Syndrome, Postural Tachycardia Syndrome, Chronic Pain, Medically Unexplained Symptoms, Long-COVID, Poorly Understood Illness, Medical Uncertainty, Lived Experience, Qualitative Research, Healthcare, Patient Journeys, Chronic Illness

[Moderator edit to add paragraph breaks.]
 
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It looks like this student did their best to collect data in different ways with a survey, individual interviews and focus groups, but all they end up with is the usual strings of buzz words conclusion - personalised, patient centred, multi-disciplinary, integrated, networks, ...

We could have written the conclusion from all the other studies we've seen that end up in the same verbal soup.

It makes no sense to me for a psychologist to be doing this sort of study for physical illnesses. If people are not getting the specialist medical services they need, and are not getting the practical support services they need, no amount of this sort of project will shift anything.
 
Dolphin said:
A need for holistic and personalised approaches to care and the development of multidisciplinary clinics, networks and specialised diagnostic facilities were emphasised, as was a need for patient partnership in research.
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I’ve skimmed the quotes from the fourth study and I can’t find anyone actually asking for multidisciplinary care (there’s a lot and I might have missed some). They just want someone that are specialists in their condition and they are tired of no one taking responsibility for them so they are passed around in the system between people that dismiss and distrust them.

All of their needs would be met if care for ME/CFS etc. was organised the way it is for MS or RA or cancer.
 
This has really become a growing problem, the overuse of euphemisms and neutral language to describe a system of intentional systemic negligence with its devastating consequences and it comes off drier than a raisin in a dry heat wave. It seems to mostly manage to get the details right, but ends up glossing over how entirely deliberate this negligence is and the depth of misery it has caused. As is tradition.

The facts that this is extensively documented and that nothing ever changes is a scandal in its own right. Because then you add all the problems with the euphemism industry where we actually don't want any of this "patient-centred" case because for decades this intentional systemic negligence has always been framed this way. Everything they built for us has been disastrous, it deserves nothing less than screaming objection, throwing bodies into this heartless senseless machine of misery.

It ends up about as realistic as portraying the realities of war in a G-rated movie, i.e. one where no blood or gore is ever shown, where everything is sanitized so that even though you can see it all, it completely whitewashes the true nature of the disaster.

All of this is a choice. All of it. This patient population has objected, even protested, against it and you'd never know reading this. This is all a consequence of psychosomatic ideology holding such an obsessive hold on this profession. It's as immensely immoral as full-scale war and anyone reading this would never see it as anything more problematic than a temporary sugar shortage, or whatever. It has no scale, no depth, it turns millions of lives destroyed intentionally as some minor inconvenience where no one responsible for it has any agency or responsibility towards anything.
 
Utsikt said:
I’ve skimmed the quotes from the fourth study and I can’t find anyone actually asking for multidisciplinary care (there’s a lot and I might have missed some). They just want someone that are specialists in their condition and they are tired of no one taking responsibility for them so they are passed around in the system between people that dismiss and distrust them.

All of their needs would be met if care for ME/CFS etc. was organised the way it is for MS or RA or cancer.
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We all agree that we need "multidisciplinary care", we just don't agree on anything else, including the disciplines involved and what they would do. Which is literally everything. Might as well pretend that we agree that food is needed while one side wants the food to be edible and on a human schedule, while the other says gravel, served once weekly, meets their definition so that's what it will be.

Which essentially means we don't agree at all. This is another growing problem, where even those who try to listen never actually listen, they interpret and place things into existing boxes that we know don't have anything useful for us, but it's all they allow.

I mentioned this a few days ago, a pre-print study where one of the main conclusions was that LC patients wanted non-pharmaceutical interventions, but when you read what they actually said it's just not true, they simply all said that they don't care what the solution is, as long as it works, which completely debunks the fashionable lie about patients rejecting effective psychological therapies.

It ends up being completely dishonest fabrication, but it technically can be interpreted this way so it's all good. It's so disturbing seeing such a level of ineptitude being so widespread in an actual expert profession.
 
rvallee said:
We all agree that we need "multidisciplinary care"
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Not me. "Multidisciplinary care" is a specific code word for "pass the buck to loads of girls and boys that we can make part of our clinical empire building". It was introduced into general use in about 1990 and is always used for this plitical purpose. Before that we had lots of different professionals just doing what they were useful for.
 
For ME/CFS 'multidisciplinary care' in the UK seems to be a euphemism for don't bother the doctors, put a bunch of psychologists, physiotherapists and occupational therapist in charge to run short courses of psychobehavioural rehabiltation'. Some variation on CBT/GET.
 
Trish said:
'multidisciplinary care' in the UK seems to be a euphemism for don't bother the doctors
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It is, for whatever.

The main purpose is to create jobs for lots of people. There is no particular reason why you should need all these different people much of the time. They claim to have special expertise but in general one or two people can learn what is needed to look after an illness.
 
Jonathan Edwards said:
Not me. "Multidisciplinary care" is a specific code word for "pass the buck to loads of girls and boys that we can make part of our clinical empire building". It was introduced into general use in about 1990 and is always used for this plitical purpose. Before that we had lots of different professionals just doing what they were useful for.
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Oh yeah well I mean it in the sense of "words have meaning", not the propaganda that co-opts common terms to strip them of that meaning.

Do we need health care? Yes. Involving several types of professionals/disciplines? Yup.

It's OK, though, nothing bad has ever come out of distorting the meaning of common words to have them expressly mean the opposite of what they actually mean, nope, never.
 
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