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

Abstract

ObjectivesTo 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.DesignA 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.SettingThe informants were recruited from two university hospitals that offer interdisciplinary assessments of young people with CFS/ME from various parts of Norway.ParticipantsFive males and 13 females aged 13–21 years with CFS/ME diagnosed 3–56 months prior to the interviews participated.ResultsThe 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.ConclusionsYoung 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.

‘We have no services for you… so you have to make the best out of it’: A qualitative study of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients’ dissatisfaction with healthcare services

“…40 Indeed, several studies have recommended better training and educational initiatives for physicians 10,41 and for school personnel. 25 Our participants gave many examples of encounters with healthcare workers where they thought that the professionals had little knowledge of ME/CFS, and that their attempts to inform and educate them, in many cases, was futile. Such lack of knowledge could also create challenges to delivering personalised services to the individual ME/CFS sufferer; delivering personalised care being seen as a top priority for the Norwegian healthcare service.…”

“…One study found that primary care physicians used social and cultural knowledge (insight gained from the media and the Internet and through observations of patients outside the clinical setting) instead of biomedical knowledge in diagnosing ME/CFS 40 . Indeed, several studies have recommended better training and educational initiatives for physicians 10,41 and for school personnel 25 . Our participants gave many examples of encounters with healthcare workers where they thought that the professionals had little knowledge of ME/CFS, and that their attempts to inform and educate them, in many cases, was futile.…”

“… 40 Indeed, several studies have recommended better training and educational initiatives for physicians 10 , 41 and for school personnel. 25 Our participants gave many examples of encounters with healthcare workers where they thought that the professionals had little knowledge of ME/CFS, and that their attempts to inform and educate them, in many cases, was futile.…”

“…One interview study explored factors perceived as positive or negative among young people with ME/CFS ( n = 18) in relation to school and everyday life. Participants experienced a lack of educational adaptations and missed social life at school, suggesting a need for school staff to provide more individually‐tailored educational and social adaptations to improve schooling and health among this group 25 . Another study 26 focused on the recovery process of two young women with severe ME/CFS.…”

“…Participants experienced a lack of educational adaptations and missed social life at school, suggesting a need for school staff to provide more individually‐tailored educational and social adaptations to improve schooling and health among this group. 25 Another study 26 focused on the recovery process of two young women with severe ME/CFS. Describing the lived experiences of the women, it emphasised the bodily and everyday life experiences en route to recovery.…”