Experiences of students with chronic illness in university education in Ireland, 2024, Doris & Morrissey

[Dolphin]

Free fulltext:
https://journals.sagepub.com/doi/full/10.1177/17423953241282246

Doris O, Morrissey EC. Experiences of students with chronic illness in university education in Ireland. Chronic Illness. 2024;0(0). doi:10.1177/17423953241282246

One of the participants has ME/CFS.

Abstract

Objective
The aim of this study was to explore the experiences of university students with a chronic illness in Ireland. The study also aimed to gain insight into students’ experiences with Disability Support Services (DSS) and identify gaps where additional supports and resources are needed.

Design
Cross-sectional qualitative study.

Methods
Fourteen students from three Irish universities participated in semi-structured interviews. The interviews were audio-recorded, transcribed, and analysed through the six-step process of reflexive thematic analysis.

Results
Four themes were developed: (1) The burden of managing a chronic illness alongside university education; (2) Interruptions, disruptions and alterations to college life; (3) Flexible supports for fluctuating conditions; (4) Achieving in educating while living with a chronic illness.

Conclusions
Participants reported a physical and emotional burden. Despite engaging in rigorous management strategies, many participants missed lectures and socialising with peers. Some found the supports from DSS to be useful, however many were unsure if they qualified for support, or found the supports available to be generic and inadequate for their needs. There is significant scope for the delivery of both teaching and DSS to be improved for this cohort, ensuring that all students, regardless of their health status, have equal opportunities for success.


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I couldn't see an education forum/subforum on a quick search

 

[rvallee]

There is significant scope for the delivery of both teaching and DSS to be improved for this cohort, ensuring that all students, regardless of their health status, have equal opportunities for success.

That's just fantasy. There is no adaptation to education that can do that. Not without effective treatments. There is some level of adaptation that can be of help to some, about the lowest possible standard, but it begins and ends with medicine by simply removing the problem entirely, removing any and all measures necessary to adapt to it.

Otherwise you end up with a similar situation as the famous snakes policy in India, where the government paid people who brought them dead snakes in order to control the population, only to see an actual industry of snake farms as a regular source of income, then when the policy ended they were all released, ending up with more snakes and a lot of money spent to get there. We don't want this moocher side industry, we need the problem fixed at its source.

I'll also say that I'm really over seeing those thematic narratives. They're always from the perspective of the researchers, making them pointless. It's all perception management. Illness causing disability doesn't need thematic narratives, the impacts are pretty much all generic and there is no need for any of this. In the end it's just publishing papers for the sake of publishing papers. There is no further purpose here. This whole system is as dysfunctional as any system could ever be.

 

[Hutan]

In Irish Law, chronic illness has been recognised as a category of disability under the Equal Status Act (2000). Educational institutions in Ireland, therefore, are legally obligated to provide reasonable accommodations to ensure students with chronic illnesses have equal opportunity to succeed. Supports are offered in most universities in Ireland through Disability Support Services (DSS), however international research has indicated that these types of supports are often inadequate for the unpredictable and fluctuating nature of chronic illness4,5 and are often set up for more predictable and stable concepts of disability.6,7 Accordingly, studies have shown that these students are less likely to disclose or seek supports compared to students with other types of disability.8–10

 

[Hutan]

I'll also say that I'm really over seeing those thematic narratives. They're always from the perspective of the researchers, making them pointless.

Yes. I don't think they are necessarily a waste of time, it's just that they aren't science. People volunteer to tell their stories and are selective about what they say, there isn't a statistically valid result. Papers like this are really reporting, a type of journalism, and, if they are done well and are actually read, then they can be useful in helping people understand the perspectives of others.

This paper was okay, but didn't provide any insights beyond what I would expect from an article on the topic written by someone who works with students with disabilities.

On 'equal opportunities for success':

That's just fantasy. There is no adaptation to education that can do that. Not without effective treatments.

Yes, that's right.

There are some important issues in this section:

Subtheme 3.1: Navigating the fluctuating nature of chronic conditions
All participants emphasised the need for flexible supports for those living with chronic illnesses. This is due to the fluctuating and often invisible nature of their conditions.
“it would be helpful for people to understand that… chronic illness fluctuates over time and maybe one day you look perfectly fine and you can do ten million things and more, and then the next day, you’re just incapacitated and you’re lying in bed”. (Emma)
Tom had a keen sense of imposter syndrome because “I feel quite healthy most of the time but it, it kind of comes in like waves”. This made him doubt his eligibility for DSS saying,
“that kind of would have been a thing that was on my mind in terms of accessing supports, that, I wasn’t really sure if I deserve them…” (Tom)
Sophie felt this perception in other people.
“It’s the same way as if someone’s in a wheelchair, they need a ramp to get in the door. That is fine, people have accepted that, whereas they’re not accepting, you look fine, so you must be fine, type thing.”

 

[rvallee]

Yes. I don't think they are necessarily a waste of time, it's just that they aren't science. People volunteer to tell their stories and are selective about what they say, there isn't a statistically valid result. Papers like this are really reporting, a type of journalism, and, if they are done well and are actually read, then they can be useful in helping people understand the perspectives of others.

It's really the themes I have issues with. They never interview enough people to merit this and basically amount to editorialization when they try to force them into boxes. And all it takes is the slightest bias in selection to create a wildly misleading picture out of it. Which is more often than not the case.