Paediatric chronic fatigue syndrome patients’ and parents’ perceptions of recovery

Harland, Matthew; Parslow, Roxanne; Anderson, Nina; Byrne, Denis; Crawley, Esther

doi:10.1136/bmjpo-2019-000525

Cited by 8 publications

(14 citation statements)

References 35 publications

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“…'Recovery' is a complex concept which varies between patients. 9 There is currently no consensus definition for recovery in paediatric CFS/ME which limits comparison between studies.…”

Section: Results In the Context Of Previous Literaturementioning

confidence: 99%

Recovery from chronic fatigue syndrome: a systematic review—heterogeneity of definition limits study comparison

et al. 2021

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BackgroundPaediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is a common illness with a major impact on quality of life. Recovery is poorly understood. Our aim was to describe definitions of recovery in paediatric CFS/ME, the rate of recovery and the time to recovery.MethodsThis systematic review included a detailed search of MEDLINE, EMBASE, PsycInfo and Cochrane Library between 1994 and July 2018. Inclusion criteria were (1) clinical trials and observational studies, (2) participants aged <19 years with CFS/ME, (3) conducted in Western Healthcare systems and (4) studies including a measure of recovery and time taken to recover.ResultsTwelve papers (10 studies) were identified, involving 826 patients (range 23–135). Recovery rates were highly varied, ranging between 4.5% and 83%.Eleven distinct definitions of recovery were used; six were composite outcomes while five used unidimensional outcomes. Outcome measures used to define recovery were highly heterogeneous. School attendance (n=8), fatigue (n=6) and physical functioning (n=4) were the most common outcomes included in definition of recovery. Only five definitions included a personal measure of recovery.ImplicationsDefinitions of recovery are highly variable, likely secondary to differences in study design, outcomes used, follow-up and study populations. Heterogeneous definitions of recovery limit meaningful comparison between studies, highlighting the need for a consensus definition going forward. Recovery is probably best defined from the child’s own perspective with a single self-reported measure. If composite measures are used for research, there should be agreement on the core outcome set used.

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“…'Recovery' is a complex concept which varies between patients. 9 There is currently no consensus definition for recovery in paediatric CFS/ME which limits comparison between studies.…”

Section: Results In the Context Of Previous Literaturementioning

confidence: 99%

Recovery from chronic fatigue syndrome: a systematic review—heterogeneity of definition limits study comparison

et al. 2021

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“…The meaning of recovery differed between participants, with expectations for improvement, the Parsonian notion of the sick role, and associated stigma being key influences on individuals’ interpretations of what recovery meant for them. Many participants deployed the concept of recovery, but definitions varied; such wide and highly individualized definitions have also been found among children with CFS/ME and their parents (Harland et al, 2019). For the majority, definitions focused around functional improvement and ability to undertake life roles again, such as working.…”

Section: Discussionmentioning

confidence: 99%

“…While many criticisms have been leveled at the theory, our research found (as with other recent studies; Glenton, 2003; Hallowell et al, 2015) elements of the theory useful. Participants in our study (along with others; i.e., Harland et al, 2019) defined recovery not as being symptom free, but being able to resume certain societal roles, such as being in paid employment and/or being able to undertake typical activities of daily living. The desire to be “normal” was often used to express this state—echoing the deviancy which Parsons allocated to the sick role.…”

Section: Discussionmentioning

confidence: 99%

“…It is still unclear what “recovery” means to people with CFS/ME. Harland and colleagues (2019) found that among children with CFS/ME and their parents, signs of recovery were relatively easy to define, but defining “complete” recovery was complicated and varied considerably between individuals. Using the concept of liminality—falling in between socially/medically constructed categories—Brown et al (2017) explored the narratives of 16 participants reporting recovery from CFS/ME, who were recruited from various sources—mainly self-help groups.…”

Section: Introductionmentioning

confidence: 99%

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Sick of the Sick Role: Narratives of What “Recovery” Means to People With CFS/ME

et al. 2020

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Little is known about what recovery means to those with chronic fatigue syndrome/myalgic encephalomyelitis, a poorly understood, disabling chronic health condition. To explore this issue, semi-structured interviews were conducted with patients reporting improvement ( n = 9) and deterioration ( n = 10) after a guided self-help intervention, and analyzed via “constant comparison.” The meaning of recovery differed between participants—expectations for improvement and deployment of the sick role (and associated stigma) were key influences. While some saw recovery as complete freedom from symptoms, many defined it as freedom from the “sick role,” with functionality prioritized. Others redefined recovery, reluctant to return to the lifestyle that may have contributed to their illness, or rejected the concept as unhelpful. Recovery is not always about eliminating all symptoms. Rather, it is a nexus between the reality of limited opportunities for full recovery, yet a strong desire to leave the illness behind and regain a sense of “normality.”

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“…Better understanding of the heterogeneity within CFS may enable subtyping, which could inform personalised treatment approaches. We now have a better understanding of what recovery from CFS means for children and adolescents, which will enable more meaningful measurement of outcomes in future trials (Brigden et al, 2018; Harland et al, 2019).…”

Section: What Are the Issues?mentioning

confidence: 99%

Paediatric chronic fatigue syndrome: 25 year perspective

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et al. 2020

Clin Child Psychol Psychiatry

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Over the lifetime of Clinical Child Psychology and Psychiatry, there has been considerable progress in understanding the epidemiology of Chronic Fatigue Syndrome (CFS), also known as myalgic encephalomyelitis (ME) and some progress in testing treatment approaches. Twenty-five years ago, clinicians and researchers did not believe that CFS existed in primary school children, little was known about the experience of children, and there were no randomised controlled trials testing treatment approaches. In this review, major developments in epidemiology, knowledge about clinical presentations and correlates, impact of CFS and treatment approaches will be highlighted. We are clinicians and researchers working in specialist CFS services in the United Kingdom.CFS has been a defined diagnostic entity since 1991 (Sharpe et al., 1991). There are several different diagnostic frameworks for diagnosing CFS (Carruthers et al., 2011;Fukuda et al., 1994;NICE, 2007;Sharpe et al., 1991). All include ongoing, debilitating fatigue which is not secondary to another medical condition or to exertion. Concomitant symptoms include general malaise, headaches, muscle and joint pain, nausea, disrupted sleep, dizziness and cognitive difficulties. Initially, the diagnostic criteria for adults were applied to children and young people. In 2004, the Royal College of Paediatrics and Child Health (RCPCH, 2004) recommended that fatigue lasting > 3 months was sufficient, a shorter duration than is required for adults. This has been reflected in some but not all the diagnostic frameworks. Here, we predominantly draw on evidence from clinical cohorts with a confirmed CFS diagnosis and evidence from general population studies of chronic debilitating fatigue, not necessarily formally assessed and diagnosed CFS. Changes in epidemiologyTwenty-five years ago, we did not know how common CFS was in teenagers, and whether it even existed in primary school aged children. The evidence base for the prevalence, incidence, and risk factors in paediatric CFS has since developed considerably.A recent systematic review and meta-analysis of prevalence studies found six studies in children and adolescents, with an estimated prevalence of 0.89% although there was considerable

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Paediatric chronic fatigue syndrome patients’ and parents’ perceptions of recovery

Cited by 8 publications

References 35 publications

Recovery from chronic fatigue syndrome: a systematic review—heterogeneity of definition limits study comparison

Recovery from chronic fatigue syndrome: a systematic review—heterogeneity of definition limits study comparison

Sick of the Sick Role: Narratives of What “Recovery” Means to People With CFS/ME

Paediatric chronic fatigue syndrome: 25 year perspective

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