“<i>The child’s got a complete circle around him</i>”. The care of younger children (5–11 years) with CFS/ME. A qualitative study comparing families’, teachers’ and clinicians’ perspectives’

Brigden, Amberly; Shaw, Alison; Barnes, Rebecca; Anderson, Emma; Crawley, Esther

doi:10.1111/hsc.13029

Cited by 5 publications

(4 citation statements)

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“…It is worthy of note that carers felt the need to take on a number of roles that were normally performed by other people and that this is likely to have impacted their ability to do other roles such as “normal” parenting and other aspects of their life including self-care. 17…”

Section: Discussionmentioning

confidence: 99%

“…10,[13][14][15] A recent study examining the roles of parents, clinicians, and teachers of primary aged children with ME/CFS indicated that each had different roles. 17 The study suggested that the clinician was responsible for diagnosis and treatment planning, while the teachers were responsible for the daily management of the child's health while they were at school. The parent was responsible for the coordination of care, the supervision of treatment, and monitoring their symptoms and activity levels.…”

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confidence: 99%

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Experiences of carers of youth, adult children and spouses with ME/CFS

et al. 2022

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Objectives The debilitating nature of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) means that family members often take on a caring role. This study compared the experiences of people caring for three groups: youth, young adults, spouses. Methods An opportunistic sample of 36 carers completed an online survey of open-ended questions asking about their experiences. Thematic analysis was used to consider the three sets of responses separately and Thematic Comparison was used to identify points of connection and disconnection across the sets. Results The themes identified were very similar to those identified in past studies. Two super-ordinate themes were identified: “Lack of knowledge and understanding” and “Holistic Impact”. Though most sub-ordinate themes were evident across all three groups, important differences were found. The sub-ordinate themes “Caring Blindly”, “Emotional and physical health cost”, and “Impact on the whole family” were more evident amongst carers of youth while the theme “Worry for the future” was more evident from carers of young adults and spouses. Discussion Differences seemed to be related to both the time since diagnosis and the life stage. A longitudinal study would help to understand how carer experiences change over the life course of caring for someone with ME/CFS.

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Section: Discussionmentioning

confidence: 99%

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Experiences of carers of youth, adult children and spouses with ME/CFS

et al. 2022

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“…For CYP with CFS/ME, disrupted schooling 'has a significant impact on the self (resulting) in a shift from a perceived normal trajectory of academic achievement and independence to one that is uncertain' (p.10), 24 and some educational support and adaptations underpinned by evidence-based awarenessraising in schools have been recommended. [25][26][27][28]…”

Section: Strengths and Limitations Of This Studymentioning

confidence: 99%

Impact of Long Covid on the school experiences of children and young people: a qualitative study

MacLean,

Wild,

Hunt

et al. 2023

BMJ Open

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ObjectivesTo explore the impact of Long Covid (LC) on the school experiences of children and young people (CYP).DesignQualitative study using narrative interviews.Participants22 CYP (aged 10–18 years, 15 female) with LC and 15 parents/caregivers (13 female) of CYP (aged 5–18 years) with LC.SettingInterviews were conducted between October 2021 and July 2022 via online video call or telephone. Recruitment routes included social media, LC support groups, clinicians, community groups and snowballing.ResultsThree key findings were identified. Finding 1: Going to school is a valued part of CYP’s lives and participants viewed educational attainment as important for their future trajectories. Returning to school full time was highlighted as a key part of regaining ‘normal life’. Finding 2: Attending school (in-person or online) with LC is extremely difficult; even a gradual return required CYP to balance the impact of being at and engaging with school, with the need to manage symptoms to prevent relapse. Often this meant prioritising school and rest over other aspects of their lives. Finding 3: School responses to CYP with LC were reported to be mixed and hampered by difficulties communicating with healthcare professionals during the pandemic and a lack of awareness of LC among healthcare and education professionals. Participants viewed supportive school responses as staff believing, understanding and taking them seriously, alongside schools offering tailored and flexible adaptations which allowed engagement with school while limiting any deterioration of symptoms.ConclusionsThis study describes how LC affects the school experiences of CYP and generates recommendations for supportive school responses alongside supportive healthcare professionals. Further research could explore the approaches that facilitate a successful return to school for CYP with LC and investigate education professionals’ perspectives on support they require to positively engage with returning pupils.

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“…Most research to date focuses on quantitative outcomes of school absenteeism and academic achievement (Sankey et al, 2006 ; Tollit et al, 2018 ), failing to detail the wider experiences of adolescents with ME/CFS when engaging with schools and the education system. One study investigated the role of primary schools in the care of young children with ME/CFS (Brigden et al, 2020 ), but is limited in its application to adolescents. There is little qualitative research about adolescents' views on managing ME/CFS in secondary education.…”

Section: Introductionmentioning

confidence: 99%

The importance of school in the management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ( ME / CFS ): issues identified by adolescents and their families

Clery

Linney

Parslow

et al. 2022

Health Social Care Comm

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Paediatric Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a disabling condition. Schools play a key role in adolescents' experiences with managing ME/CFS. However, little is known about the experiences of adolescents with ME/CFS (and their families) in schools. This paper is an incidental qualitative study, which combines data from two independent ME/CFS studies: study 1 researched ethnic minority adolescents with ME/CFS; study 2 explored Acceptance and Commitment Therapy for adolescents with ME/CFS who had not recovered after one year. Participants included: adolescents with ME/CFS; their families; and medical professionals (ME/CFS specialists and non‐specialists). Adolescents, their families, and ME/CFS medical professionals were recruited from a UK specialist paediatric ME/CFS service. Non‐ME/CFS medical professionals were recruited from the same region. Semi‐structured qualitative interviews and focus groups were undertaken. Participants' views on schools from each study were combined and thematic analysis was used to identify themes. Fifteen adolescents with ME/CFS (11–17 years old), sixteen family members, and ten medical professionals (GPs, school nurses and ME/CFS specialists) were interviewed. Four key themes were found: (1) adolescents identified school was important for aiding ME/CFS recovery, especially educationally and socially; (2) families described varying levels of support from schools and local authorities with help managing ME/CFS – some described significant practical and emotional difficulties to accessing education, whereas others recounted examples of positive supportive strategies, particularly when teachers had previous experience or knowledge of ME/CFS; (3) parents thought three‐way communication between schools, healthcare and families could improve support; (4) participants felt schools were an appropriate place for knowledge building and raising awareness of ME/CFS amongst teachers and pupils, to aid improved supportive measures. In conclusion, this paper provides rich data that highlights the importance of education and the realistic fears and hurdles for adolescents with ME/CFS remaining engaged in education and the impact on their future. Some families described positive strategies in school, which were viewed as helpful to manage ME/CFS in the classroom. These strategies could be implemented alongside knowledge building initiatives and improved communication between healthcare and education. There is a need to further investigate useful strategies and determine how teachers can be best supported in implementing them.

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“The child’s got a complete circle around him”. The care of younger children (5–11 years) with CFS/ME. A qualitative study comparing families’, teachers’ and clinicians’ perspectives’

Abstract: This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

Cited by 5 publications

References 49 publications

Experiences of carers of youth, adult children and spouses with ME/CFS

Experiences of carers of youth, adult children and spouses with ME/CFS

Impact of Long Covid on the school experiences of children and young people: a qualitative study

The importance of school in the management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ( ME / CFS ): issues identified by adolescents and their families

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