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Adolescent's descriptions of fatigue, fluctuation and payback in chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): interviews with adolescents and parents. | LitMetric

AI Article Synopsis

  • - The study investigated how adolescents with chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) and their parents perceive fatigue, symptoms, and their personal experiences, focusing on fluctuations and "payback" after activity.
  • - Conducted through semi-structured interviews with 21 adolescents (aged 12-17) and their parents, the research revealed variations in how fatigue and its effects manifest in daily life, including the differences in symptom severity and types of activities that trigger payback.
  • - Findings highlight that while all participants reported experiencing fatigue and fluctuating symptoms, their individual experiences differed significantly in terms of severity and impact on their daily functioning.

Article Abstract

Objective: As part of a larger qualitative study to explore outcomes important in paediatric chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) and what improvements in fatigue and disability are key, interviews were undertaken with adolescents and their parents. This paper focuses on their descriptions of fatigue, fluctuation of symptoms and payback.

Design And Setting: Semistructured qualitative interviews were undertaken between December 2014 and February 2015. Adolescents and parents were interviewed separately. Participants were recruited from a single specialist paediatric chronic fatigue service. Interviews were audio recorded, transcribed verbatim and analysed using thematic analysis.

Participants: We interviewed 21 adolescents and their parents (20 mothers and 2 fathers). The adolescents were aged between 12 and 17 years of age (mean age 14.4 years), mild to moderately affected by CFS/ME (not housebound) and the majority were female (16/21).

Results: All adolescents with CFS/ME reported fatigue, a natural fluctuation of the condition, with good days and bad days as well as an increase in symptoms after activity (payback). However, adolescent's descriptions of fatigue, symptoms and the associated impact on their daily lives differed. The variations included: fatigue versus a collection of symptoms, constant versus variable symptoms and variable symptom severity. There were differences between participants in the amount of activity taken to cause payback. The impact of fatigue and symptoms on function ranged from: limiting the duration and amount of leisure activities, struggling with daily activities (eg, self-care) to no activity (sedentary).

Conclusions: Fatigue, fluctuation of the condition and payback after activity are described by all adolescents with CFS/ME in this study. However, the individual experience in terms of how they describe it and the degree and impact varies.

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Source
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6307594PMC
http://dx.doi.org/10.1136/bmjpo-2018-000281DOI Listing

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