Support Experiences of Children and Youth with ME/CFS and Epilepsy in New Zealand Schools: A Parental Perspective, 2022, Bierre (thesis)

[Tom Kindlon]

Support Experiences of Children and Youth with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Epilepsy in New Zealand Schools: A Parental Perspective

A thesis presented in partial fulfilment of the requirements for the degree of Master of Science with an Endorsement in Health Psychology

At Massey University, Manawatu Campus, New Zealand

Kirstin Louise Bierre

2022

Abstract

Medical advancements have changed the prognosis of many paediatric conditions, leading to a rise in the number of children with chronic health conditions (CHCs) who require support to gain equitable education opportunities and outcomes. Two CHCs that impact on schooling are myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and epilepsy. Previous research has detailed different supports offered by schools, but there is a gap in the literature regarding the support of children with ME/CFS and epilepsy in New Zealand schools. The current research aimed to gather parents’ perceptions on the different supports available in New Zealand for their children/youth with ME/CFS or epilepsy to help with the impact their CHC has on schooling.

Participants included 20 parents of children with ME/CFS (11-20 years) and 23 parents of children with epilepsy (6-18 years). A mixed methods online survey asked for parents’ perceptions of the impact that ME/CFS and epilepsy had on schooling and the support available in ‘Mainstream’ and ‘Other’ schools. Through mixed method analysis, including descriptive statistics and thematic analysis, six main themes and subthemes were identified; 1) Let-down by their own bodies, 1.1) Damaging self-concept; 2) Struggle for validation; 3) Luck of the draw: Both supportive and unsupportive experiences, 3.1) Teachers operating in a rigid system, and 3.2) Gratitude from parents; 4) Ill-suited support, 4.1) Other schools as transitional institutions; 5) Lack of understanding and discrimination; and 6) Impact of COVID-19. These themes revealed perceptions of positive support experiences with understanding teachers who formed trusting/positive relationships with parents, as well as negative experiences centred around a lack of understanding from a restrictive system not well designed to support their children with ME/CFS or epilepsy. Condition specific subthemes revealed differences between ME/CFS and epilepsy – related to condition legitimacy, symptom visibility, and funding opportunities.

Findings were also interpreted using a socio-ecological framework, which highlighted the interrelated environments surrounding the child/youth, including teachers/classrooms, schools, health/education policies, and western health conceptualisations, which likely influenced support. These findings shed light on parents’ perceptions of the support of their child/youth with ME/CFS or epilepsy in New Zealand, with the hopes of informing future research or support initiatives. Keywords: myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS, epilepsy, school support experiences, New Zealand education system, parent perspectives.

 

[Hutan]

It looks as though this has been supervised by Don Baker, the psychologist at Massey who has some family experience with ME/CFS. It's good to see ME/CFS being looked at, and the issue of education management in young people with ME/CFS is an important one.

I'm only up to page 9; it seems good. But ME/CFS seems to be mostly seen in terms of fatigue. There's reference to a Crawley paper on school attendance.

Using a large sample of 211paediatric ME/CFS patients, Crawley and Sterne (2009) demonstrated that almost 62% of children reported attending 40% or less of their expected school attendance. Those with poorer physical functioning, measured by the physical function subscale of the Short Form 36 (SF-36), were found to be less likely to attend school compared to students with better physical functioning. With this being said, 98% of children were found to have, to some extent, reduced physical functioning capacity. Crawley and Sterne found evidence to suggest an association between poorer physical functioning and increased pain and fatigue in all participants, as well as depression symptoms in older children able to complete the Hospital, Anxiety and Depression scale. What was not found was a direct association between attendance and the symptoms of pain, fatigue, depression, or anxiety. As poorer functioning was found to be associated with worsening of symptoms, it may be possible that ME/CFS is impacting on schooling via its impact on physical functioning, with symptoms that are not impeding on physical functioning not impacting on schooling (Crawley & Sterne, 2009).

The puzzle of physical functioning being related to school attendance, while symptoms of pain, fatigue, depression or anxiety are not is only a puzzle if one thinks of ME/CFS as primarily fatigue (and pain, depression and anxiety). If instead ME/CFS is thought of as a reduced capacity for activity, with pain and fatigue mostly happening when the capacity for activity is exceeded, then there is no puzzle. Some young people will be at home, mostly not exceeding their capacity for activity and experiencing relatively low levels of fatigue and pain.

This Dutch IQ study was interesting - I hadn't heard of it before. What would be really interesting is to do another Dutch study using the same 'before illness' IQ, and then, with some healthy controls as well as young people with ME/CFS, do the IQ test on a day when the participant is well rested, and then have them do whatever is a busy day for them, and then, the next day have them do the IQ test again.

An impact of ME/CFS on academic functioning was identified by Nijhof et al. (2016) when IQ scores were compared to that of healthy peers. Initial measures of IQ were identified using the standardised Dutch education test (CITO), which is a valid and reliable measure of IQ and is
administered to all primary school children to determine the level of intellectual functioning and subsequent school level, thus being ‘below average’, ‘average’, ‘above average’ and ‘high. Participants with ME/CFS were diagnosed and identified post CITO. CITO measured IQ scores showed no difference between those with ME/CFS and healthy peers. However, post diagnosis IQ, measured using age-appropriate versions of Wechsler intelligence scales, was 8 points lower than healthy controls, with those with ME/CFS generally having lower IQ scores than controls in the same school level. Current IQ scores when compared to initial CITO scores in children with ME/CFS showed a diminishing of IQ and cognitive abilities across the two time points (Nijhof et al., 2016). This study is unique as it is situated within the Dutch culture where it is the norm to measure the child’s IQ before entering secondary education; this providing a rare opportunity to compare retrospectively a child’s intelligence before they were diagnosed.

With respect to the 'impact of health-related needs on schooling', I thought the conclusion was a bit odd.

Even though these two conditions have an apparently dissimilar nature with different symptomology, the impact that they both have on schooling appear to be synonymous with apparently no area of schooling unaffected. Those symptoms which have an apparently large impact on the child/youth (i.e., mental/physical fatigue, cognitive difficulties/deficits), also appear to impact on schooling similarly in ME/CFS and epilepsy. The main difference between the two would be the experience of seizures in children with epilepsy. Although seizures appear to have a significant impact in their unpredictable nature and loss of bodily control, amongst other things, the way these appear to impact on schooling are through the effects of seizures i.e., through post seizure mental and physical fatigue or the effect of seizures on cognitive functioning.

A reference for attendance figures for young people with epilepsy reports a median number of three school days missed over the last six months. For ME/CFS, there is the Crawley finding on school absence ( the 62% of children reporting attending less than 40% of their expected school attendance), and other evidence for a substantial impact on attendance. To me, the issues relating to schooling are fairly different.

 

[Hutan]

This bit is from the discussion, and comes after a paragraph on how parents felt that mainstream schools had not been able to be sufficiently supportive:

When it came to ‘Other’ schools, parents of children with ME/CFS felt let down further by the transitional nature of these institutions, which were seen to aim towards returning children/youth to ‘Mainstream’ schooling rather than aiming to be a permanent source of support for children. This again may be due to limits in funding or resources and these schools’ ability to support children long term. Alternatively, returning an unwell child to regular schooling with their regular teachers and peers, and achieving a sense of normalcy for the child may be a goal that a lot of families and teachers work towards. This may be a model that works for other health conditions but was apparently an ill-suited modus operandi for those with chronic health conditions particularly chronic fatigue. This points to a system level problem with these children falling through the cracks.

I think they are mostly talking about the Health schools here - New Zealand has three health schools that help educate children while they are too ill to attend their normal school:

https://www.nhs.school.nz
https://www.srhs.school.nz
Does the Health School become my child's only school?
No, your child will stay enrolled at their regular school and transition back as soon as possible.

How long can I stay on the Health School Roll?
Until you are well enough to return to school. This will be determined by your medical specialist. All students require a medical certificate from a Medical Practitioner (GP) or Specialist in order to be eligible for our school. Every 15 weeks we require a new medical to verify your condition.

Why does a specialist have to sign my Medical Certificate?
If you are unwell for a long time, we need to be sure that you are getting all the medical help you can, so that when you are well you can return to regular school. A specialist medical certificate will outline when you will be well enough to go back to school.

https://crhs.school.nz

When I was thinking about returning to New Zealand, I went to see one of the Health Schools. I believe that visiting them was not a normal thing, I was able to do that because a friend knew someone there. The staff I met were lovely. I asked them if they had had any students with ME/CFS. They recalled a young person with CFS - they had been with them until they didn't meet the age criteria. They had an odd reaction about the young person, I think they felt that they had failed and the young person had failed and the parents of the young person had failed. They said something along the lines of they had only been able to get the young person to do a bit of craft or something. I don't recall the details as it was some years ago now. This was just a few years into my family's experience of ME/CFS; I came away feeling quite demoralised.

I think the health schools would be a good target for education efforts by patient charities.