Factors related to educational adaptations and social life at school experienced by young people with CFS/ME: a qualitative study, 2021, Similä et al

Abstract

Objectives
To explore factors perceived as positive or negative among young people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in relation to school and everyday life.

Design
A qualitative study with semistructured individual interviews performed at the local hospital or at the informants’ homes between September 2017 and January 2018, with an additional telephone interview to collect data on experiences from the COVID-19 pandemic, conducted in September 2020. Data were analysed using a grounded theory approach.

Setting
The informants were recruited from two university hospitals that offer interdisciplinary assessments of young people with CFS/ME from various parts of Norway.

Participants
Five males and 13 females aged 13–21 years with CFS/ME diagnosed 3–56 months prior to the interviews participated.

Results
The informants were concerned about a lack of educational adaptations and missed social life at school. Educational and social adaptations could improve schooling and health among young people with CFS/ME. Negative experiences were related to a lack of knowledge about CFS/ME among school personnel and young people’s difficulties to limit activities. Online teaching as experienced during the COVID-19 pandemic was described as positive both for education and social life.

Conclusions
Young people with CFS/ME can benefit from better educational adaptations and increased social interaction with peers. From the participants’ view, factors that limit learning and socialisation include a lack of knowledge about CFS/ME among teachers and school personnel, expectations from teachers of doing more than they could manage at school, feeling alone coping with the disease and not recognising their own limitations regarding what they are able to do. Suggested factors perceived to enhance learning and socialisation were a better understanding of the disease among school personnel and peers, suitable educational adaptations and being able to socialise with peers.

Open access, https://bmjopen.bmj.com/content/11/11/e051094

 

Concern about the lack of something, does not necessarily mean that provision of what is lacked will automatically benefit the person experiencing that absence negatively. Someone with a swallowing disorder, meaning they can not swallow solid food, may miss having solid food in their diet, but making solid food available to them will of itself not eliminate their inability to swallow it.

Although I agree that adaptations to better enable education and opportunities for increased social interaction are potentially good things, this is only true if the opportunities provided are within the child’s current activity thresholds and any hypersensitivities. First and foremost should be managing the pupil’s health issues, and any education adaptations or increased social opportunities need to recognise their current limitations.

Though stating this point as I do may be unfair in relation to the article as a whole, as the authors take the prior accommodation of the pupil’s health needs as a given, I remain concerned that the abstract could give rise to the misunderstanding that providing these opportunities alone is sufficient or for some even a possibility.

 

Not able to read the paper at the moment, but want to (red) flag that one of the authors, Ingrid Helland, is leader of the National Competence Service for CFS/ME in Norway and known for her biopsychosocial approach to ME.

 

Is this the same research project?

https://www.s4me.info/threads/exper...ualitative-interview-study-2021-simila.23285/

 

They hear patients saying that health services don't understand anything about the disease, that it's the main obstacle to improving things, and their conclusions seems to be that they are unable to understand it any better that and therefore nothing more can be done on their end. How are these people supposed to make the pwME's peers understand better something they have been told explicitly they don't understand? And either don't understand what they're hearing or just don't care.

Of course what the patients actually need is competent medical care but those "researchers" can't imagine what that is because it would imply they don't understand what they claim, and probably believe, to understand. What a complete waste.

 

No, don't believe so. It might be the same research team but the abstracts seem to describe different projects.

 

ah ok. I thought they had published two papers based on same project.