Experiences Among School Personnel and School Nurses on Educational Adaptations for Students With CFS/ME: A Qualitative Interview Study, 2021, Simila

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Introduction: Chronic fatigue syndrome (CFS/ME) is a disabling disease severely impacting school attendance, education, and social life in young students. Uncertainties surrounding CFS/ME etiology may impact the interpretation of CFS/ME in schools. Thus, school personnel need information from health care providers to make adequate adaptations to education and social life at school for these students.

Objectives: To explore teachers, counselors, and school nurses' experiences with adapting education for students with CFS/ME aged 13–19 in secondary and high schools.

Design: A qualitative study with focus group interviews and individual interviews performed face-to-face or digitally between November 2020 and March 2021. Data were analyzed using Systematic text condensation.

Participants: Six teachers, two counselors, and four school nurses in secondary and high school participated.

Results: Adapting education for students with CFS/ME was challenging, especially before the students received a diagnosis. The challenges were related to identifying the students' adaptational needs, maintaining a teacher-student relationship due to school absence, difficulties in maintaining continuity of education, and uncertainty regarding the diagnosis. Successful adaptations were related to quickly reacting to school absence, early referral to educational, psychological services, a close collaboration with the school management, and the development of digital teaching for students with CFS/ME. Interdisciplinary collaboration and a clear, constructive plan with adaptive measures, including maintained teacher-student communication and educational and social adaptations, may be useful in preventing the losses, young people, with CFS/ME experience.

Conclusion: Early interdisciplinary collaboration to adapt education and social life at school for students with CFS/ME, may support teachers, counselors, and school nurses in their efforts to adapt education and prevent losses related to academic and social development in students with CFS/ME.

https://www.frontiersin.org/articles/10.3389/fped.2021.756963/full
 
Results: Adapting education for students with CFS/ME was challenging, especially before the students received a diagnosis. The challenges were related to identifying the students' adaptational needs, maintaining a teacher-student relationship due to school absence, difficulties in maintaining continuity of education, and uncertainty regarding the diagnosis. Successful adaptations were related to quickly reacting to school absence, early referral to educational, psychological services, a close collaboration with the school management, and the development of digital teaching for students with CFS/ME. Interdisciplinary collaboration and a clear, constructive plan with adaptive measures, including maintained teacher-student communication and educational and social adaptations, may be useful in preventing the losses, young people, with CFS/ME experience.
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After all that, and it merely "may be useful".
 
The sample is biased towards those who are more likely to be interested in ME/CFS and want to help, but I found it an interesting read. The participants are teachers and school nurses.

It's a paper that supports early diagnosis i.e. earlier than 1 year.
The participants experienced great relief when the students received a diagnosis. Subsequently, the students received follow-up from the hospital, and both teachers, counselors, and school nurses could dialogue with the hospital.
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The paper is very light on concrete suggestions, and there are indications that the adaptations that were tried were often not very successful. It sounded as though there is a feeling of the school nurses and teachers not really knowing what they are supposed to be doing - what with the uncertainty about the cause and the treatment, and different ideas coming from parents. It seemed that the relief when a diagnosis was provided was that dealing with the situation no longer needed to be directed by them. There seemed to be refuge in the 'well-defined' plans:

Continuity and well-defined plans for educational and social adaptations are of utmost importance for students with CFS/ME (1, 15). It also reassures teachers when they adapt education and relate to students with CFS/ME (1, 20).
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I'd suggest that the reassurance that the well-defined plans provided to teachers was largely illusory, in much the same way that a lot of the planning and goal setting that is recommended for ME/CFS and Long Covid is. In my experience, the task of helping a young person through the experience of ME/CFS involves flexibility and continuous re-assessment.

I found it interesting to reflect that the ongoing disputes between the BPS paradigm and a biomedical approach do also make the role of teachers a lot harder. They are often having to make a personal decision about how to approach things, and they don't have much support for that decision-making. There was a suggestion of BPS thinking in some of the comments:
“(…) measures we do for these students are to give work tasks that provide empowerment (…). Then I also feel that the student is motivated to do this again. (…) it may be to ask some leading questions or do something that they are a little familiar with, then, to make things safer (…) We have always placed the student with someone he knows well (…) I think it is a motivating factor to come to school as well.” (Teacher I).
But, at the same time, thinking about my daughter who recovered over a couple of years, that experience does knock self-confidence, and could easily do so permanently. A young person who is struggling academically before becoming ill might give up on school because of the difficulties, even once they start recovering. So, there is a role for teachers helping to restore that self-confidence.

There was this positive experience:
“(…) It is so vital how the school copes with this situation when the student becomes so ill, and then I think specifically about the importance of a teacher making contact once a week, even if there is no teaching (…). Just the fact that he came by and said hello and talked a little (…) it meant so much to the student, (…) it was the lifeline to society in a way, and that he could send greetings back to the classmates.” (School nurse III)
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It was noted that the experience of distance teaching during lockdowns might provide some ideas about how students with ME/CFS can be better accommodated:
Teachers had experienced increased contact with students with CFS/ME by using digital teaching during the school lock down due to the COVID-19 pandemic. They suggested that this could be a continued measure beyond the pandemic if they had the resources to develop digital teaching for students with CFS/ME, for instance, as a tool for individual counseling time with the student.
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Therefore, it may be helpful to learn from recent experiences related to social isolation, digital teaching, and contact with students during the COVID-19 pandemic (37).
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I was left with the feeling that ME/CFS patient organisations need to be reaching out to teachers and school nurses, to give them information so that mis-information from BPS proponents does not fill the void.
 
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My experience with school absence due to illness is that things can be going well with committed teachers offering plans then everything being overturned because of a truancy officer who has heard it all before ...

League tables for school attendance impact everything to do with sick kids too. My grandson was out the door and off the books as soon as it was legal with no plan in place, education over.
 
Hutan said:
In my experience, the task of helping a young person through the experience of ME/CFS involves flexibility and continuous re-assessment.
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From my own experience with my daughter who became ill with ME in high school and remained ill until she was fortunate enough to have the well known pregnancy remission - 11 years - I agree with you completely. Sometimes it feels like juggling a dozen balls at once, but being sure that a child with ME has some sense of control of their own illness, being as helpful as possible while not interfering with the child’s learning process, and giving support and encouragement to make it through every day is essential.

Just as an aside, the CDC has a contract through which they are in contact with school nurses about ME/CFS. I am not extremely hopeful about it, but it could be interesting.
 
I worked with AfME on awareness raising in education which produced a range of info for teachers ( nurses were on " to do" list but fundng did not cover this - though I believe that there were some school nurses in some of the seminars which were delivered).

Playing a spoon theory " game" as part of a seminar for teachers really hit home how limiting the illness can be and how difficult the choices are everyday.
Key points that we managed to get across were that this is a health issue ( not school avoidance) , that some kids are simply too ill to go into school at all, that pushing progress can cause permanent worsening and that families should be believed and supported

Links to webpage with info and resources
How can I help? | Action for ME

I've uploaded an info pack from the web page which may be helpful for others - teachers found the key principles table useful - it is basically common sense and applicable to many chronic illnesses
 

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That's a very nice resource @Amw66. I liked the emphasis on believing that the young person is actually ill. And this:
Adjustments are necessary to stabilise health and this is a priority over education.
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I'd probably go further than the resource does in noting that formal education can even be completely abandoned for a time or perhaps for good. The resource seems to be focused on accommodations at school and suggesting how education might be able to be done at home.

If a young person can mostly rest at home, with maybe just keeping up a hobby or seeing their friends, perhaps they will recover, or at least have some time to learn about pacing and think about what is most important to them. But, if they keep pushing on, even with a drastically reduced study load, despite ongoing deterioration, then they may not learn much, and may also end up more ill, and feeling hopeless.

I think sometimes the parents and/or the young person are slow to acknowledge that a young person's health is deteriorating, and that they can't follow the same path as their peers right now. An observant teacher could be the one who takes the pressure off and suggests the young person takes a break for a few months, to see how things go.

As Graham, a teacher himself, once said, a lot of school is just padding, in terms of teaching young people what they really need to know for their life ahead. If a young person's passion is cake decorating or knife-making or clothes design or app design or even an academic field, following the standard approach to education almost certainly is not necessary, or even the best way.

My son and I both found it quite liberating when we realised that there were lots of different ways to get to where he wanted to get to, and some of them require a lot less energy than the usual way.
 
Hutan said:
That's a very nice resource @Amw66. I liked the emphasis on believing that the young person is actually ill. And this:


I'd probably go further than the resource does in noting that formal education can even be completely abandoned for a time or perhaps for good. The resource seems to be focused on accommodations at school and suggesting how education might be able to be done at home.

If a young person can mostly rest at home, with maybe just keeping up a hobby or seeing their friends, perhaps they will recover, or at least have some time to learn about pacing and think about what is most important to them. But, if they keep pushing on, even with a drastically reduced study load, despite ongoing deterioration, then they may not learn much, and may also end up more ill, and feeling hopeless.

I think sometimes the parents and/or the young person are slow to acknowledge that a young person's health is deteriorating, and that they can't follow the same path as their peers right now. An observant teacher could be the one who takes the pressure off and suggests the young person takes a break for a few months, to see how things go.

As Graham, a teacher himself, once said, a lot of school is just padding, in terms of teaching young people what they really need to know for their life ahead. If a young person's passion is cake decorating or knife-making or clothes design or app design or even an academic field, following the standard approach to education almost certainly is not necessary, or even the best way.

My son and I both found it quite liberating when we realised that there were lots of different ways to get to where he wanted to get to, and some of them require a lot less energy than the usual way.
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I agree @Hutan .
My daughter had to give up school completely and it was a huge weight lifted at the time - the pressure to live up to unrealistic expectations was intense.

For a consensus document it's a positive.
We were starting from a place where PEM itself was poorly defined and mild illness was more generally depicted.

Nearly all paediatric research has a huge emphasis on school attendance so getting a crack in that mantra is an achievement .

COVID 19 has done in a few months what we have struggled with for years. Access to distance / blended learning - sadly its being rolled back in most places .
Had there been an option to do even a couple of hours a week online dippung in and out we would be in a different place.
 
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The tragedy is that many of the people involved have been taught/ frightened by being told that the children will be completely bedridden for the rest of their lives unless they are persuaded to exercise and removed from influences who do not back that.
 
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