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

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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.
myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS, epilepsy, school support experiences, New Zealand education system, parent perspectives