Experiences of pain in paediatric chronic fatigue syndrome/myalgic encephalomyelitis: a single-centre qualitative study

Serafimova, Teona; Ascough, Caitlin; Parslow, Roxanne; Crawley, Esther

doi:10.1136/bmjpo-2021-001201

Cited by 3 publications

(1 citation statement)

References 18 publications

(27 reference statements)

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“…Recent research involving child and adolescent patients with ME/CFS reveals how profoundly the pain they endure affects their mental health and limits their ability to participate in everyday life (Serafimova et al, 2022). Loneliness and isolation permeate their experience while severely ill, echoing the findings of earlier research involving adolescents severely affected by ME/CFS (Williams‐Wilson, 2009).…”

Section: Discussionmentioning

confidence: 99%

A suffering body, hidden away from others: The experience of being long‐term bedridden with severe myalgic encephalomyelitis/chronic fatigue syndrome in childhood and adolescence

Krabbe,

Bjorbækmo,

Mengshoel

et al. 2024

Nursing Inquiry

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In this article, we present findings from a qualitative study examining how young women experience being long‐term bedridden with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), during childhood and adolescence. The aim is to explore how young women who fell ill with ME/CFS during childhood and adolescence look back on their lived experience of being long‐term bedridden from the vantage point of being fully or partially recovered. Informed by a phenomenological theoretical perspective, the researchers applied a narrative methodological approach involving the analysis of interviews with 13 women, aged 16–29 years at the time of the interview. Attention was particularly paid to how participants structured their narratives and to the events (telling moments) they identified as important. Four major storylines were developed: Ambivalent responses to the presence of others; A body on the edge of life; An eternity in the dark; and Recasting painful memories of being bedridden and alone. Based on our findings, we argue that the experience of being long‐term bedridden with ME/CFS during childhood and adolescence can be understood and communicated as a plot in which individuals find themselves pushed to the extreme limit of suffering and loneliness.

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Section: Discussionmentioning

confidence: 99%

A suffering body, hidden away from others: The experience of being long‐term bedridden with severe myalgic encephalomyelitis/chronic fatigue syndrome in childhood and adolescence

Krabbe,

Bjorbækmo,

Mengshoel

et al. 2024

Nursing Inquiry

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A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments

France,

Uny,

Turley

et al. 2023

Cochrane Database of Systematic Reviews

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Understanding how children and young people with chronic non-cancer pain and their families experience living with pain, pain management and services: a meta-ethnography

Silveira Bianchim,

Caes,

Forbat

et al. 2024

Health Soc Care Deliv Res

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Background Childhood chronic pain is a widespread public health issue. We need to understand how children with chronic pain and their families experience chronic pain and its management. Objectives To conduct a meta-ethnography on the experiences and perceptions of children with chronic pain and their families of chronic pain, treatments and services. We investigated how children and their families conceptualise and live with chronic pain; what they think of and want from health and social care services; and what they conceptualise as ‘good’ pain management. Design Meta-ethnography with stakeholder and patient and public involvement in the design, search and sampling strategies, analysis and dissemination. Review strategy: comprehensive searches of 12 bibliographic databases and supplementary searches in September 2022, to identify qualitative studies with children aged 3 months to 18 years with chronic non-cancer pain and their families. We included studies with rich explanatory data; appraised methodological limitations using the Critical Appraisal Skills Programme tool; and extracted, analysed and synthesised studies’ findings. We used Grading of Recommendations Assessment, Development and Evaluation-confidence in the evidence from reviews of qualitative research to assess confidence in review findings. We integrated findings with 14 Cochrane treatment effectiveness reviews on children’s chronic non-cancer pain. Results We synthesised 43 studies sampled from 170 eligible studies reported in 182 publications. Studies had minor (n = 24) or moderate (n = 19) methodological limitations. Grading of Recommendations Assessment, Development and Evaluation-confidence in the evidence from reviews of qualitative research assessments of review findings were high (n = 22), moderate (n = 13) or very low confidence (n = 1). Moderate and severe chronic pain had profound adverse impacts on family members’ well-being, autonomy and self-identity; family dynamics; parenting approaches; friendships and socialising; children’s education and parental paid employment. Most children and families sought a biomedical cure for pain. They experienced difficulties seeking and receiving support from health services to manage pain and its impacts. Consequently, some families repeatedly visited health services. Cochrane reviews of intervention effects and trials did not measure some outcomes important to children and families, for example effects of pain on the family and resolution of pain. Reviews have mainly neglected a biopsychosocial approach when considering how interventions work. Limitations There were limited data on common pain conditions like migraine/headache, abdominal pain; some rarer conditions; children with learning disabilities and under-fives; siblings; fathers and experiences of treatments/services. We excluded studies on cancer, end-of-life pain and experiences of healthcare professionals. Conclusions We developed the family-centred theory of children’s chronic pain management, integrating health and social care with community support. Future work Future research should explore families’ experiences of services and treatments, including opioids, and social care services; experiences of children with autism and learning disabilities, under 5 years old and with certain common pain conditions. We need development and testing of family-centred interventions and services. Study registration This study is registered as PROSPERO (CRD42019161455) and Cochrane Pain, Palliative and Supportive Care (623). Funding This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR128671) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 17. See the NIHR Funding and Awards website for further award information.

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Experiences of pain in paediatric chronic fatigue syndrome/myalgic encephalomyelitis: a single-centre qualitative study

Cited by 3 publications

References 18 publications

A suffering body, hidden away from others: The experience of being long‐term bedridden with severe myalgic encephalomyelitis/chronic fatigue syndrome in childhood and adolescence

A suffering body, hidden away from others: The experience of being long‐term bedridden with severe myalgic encephalomyelitis/chronic fatigue syndrome in childhood and adolescence

A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments

Understanding how children and young people with chronic non-cancer pain and their families experience living with pain, pain management and services: a meta-ethnography

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