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Thesis What is the psychological & educational impact of being an emerging adult living with ME/CFS?A qualitative interpretative phenomenological analysis

Discussion in 'ME/CFS research' started by Dolphin, Feb 10, 2025.

  1. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    6,174
    https://research.manchester.ac.uk/e...gical-and-educational-impact-of-being-an-emer

    https://pure.manchester.ac.uk/ws/portalfiles/portal/351532574/FULL_TEXT.PDF


    What is the psychological and educational impact of being an emerging adult living with ME/CFS? A qualitative interpretative phenomenological analysis
    • Emma Williams


    Student thesis: Doctor of Counselling Psychology

    Abstract

    Background:

    Emerging adulthood has been described as a life stage between adolescence and adulthood. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) is a highly intrusive condition with symptoms impacting psychological wellbeing and educational participation and enjoyment. Aim: Much of the qualitative research regarding ME/CFS has been conducted with children, adolescents or adults. The experiences of emerging adults has gone under-researched. This research aims to better understand and advocate for the psychological and educational wellbeing of emerging adults living with ME/CFS.

    Methodology:

    Through semi-structured interviews, five emerging adults shared their psychological and educational experiences of life with ME/CFS. Interpretative phenomenological analysis (IPA) was used to ideographically explore meaning and sense-making.

    Findings:

    Analysis found six group experiential themes (GETs): (1) others don't understand, (2) lacking control, (3) Pushing beyond energy capacity because of pressure, frustration or denial, (4) Feeling less-than and not enough, (5) grief and longing for lost identities, and (6) inconsistent educational support.

    Conclusion:

    Feeling misunderstood was at the heart of many psychological and educational experiences. Efforts to become better understood meant participants spent precious energy educating others. All participants reported ME/CFS has restricted their lives, bodies or future. A detrimental tendency to push beyond energy capacity was exacerbated by pressure, frustration and/or denial. Most participants grieved for lost hobbies, abilities and opportunities and most participants spoke about inconsistent, fluctuating educational support for their ME/CFS needs.

    Implications:

    Participants described a desire to feel less judged and better understood. It may be beneficial for family, friends and peers to identify unkind bias and suspend unevidenced judgement. The same actions made by education professionals can help reduce disability discrimination in schools, colleges and universities. Online teaching, deadline extensions, resources in additional formats, early access to lecture materials and personalised, well disseminated academic access plans may help students living with ME/CFS to feel better supported within the academic arena.
    Date of Award 6 Jan 2025
    Original language English
    Awarding Institution
    • The University of Manchester
    Supervisor Ishba Rehman (Supervisor) & Terry Hanley (Supervisor)
    Keywords
    • Psychological
    • Educational
    • Emerging adults
    • Myalgic encephalomyelitis
    • ME/CFS
    • Chronic fatigue syndrome
    • Emerging adulthood
    Cite this
    • Standard
    What is the psychological and educational impact of being an emerging adult living with ME/CFS? A qualitative interpretative phenomenological analysis
    Williams, E. (Author). 6 Jan 2025
    Student thesis: Doctor of Counselling Psychology
     
    Dolphin, Feb 10, 2025
    #1
    MEMarge, Sean, hotblack and 9 others like this.
  2. Hutan

    Hutan Moderator Staff Member

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    31,130
    Location:
    Aotearoa New Zealand
    Hutan, Feb 10, 2025
    #2
    MEMarge, hotblack, bobbler and 5 others like this.
  3. Creekside

    Creekside Senior Member (Voting Rights)

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    1,378
    Does "qualitative-interpretive" translate to "We're just making stuff up"?
     
    Creekside, Feb 10, 2025
    #3
    hotblack, alktipping and Peter Trewhitt like this.
  4. Hutan

    Hutan Moderator Staff Member

    Messages:
    31,130
    Location:
    Aotearoa New Zealand
    I guess it gives scope for making stuff up, in a way that 'quantitative' does not, although we have seen some remarkable examples of where even hard numbers have not got in the way of a good story. At least it's an honest description, and readers can make what they will of the product.

    I haven't read the thesis, but the conclusions seem to align with what I have seen. It's an important topic, and one that, as we are discussing elsewhere, can help explain why activation therapies can be harmful.

    I think this age group has a particularly tough time of it with ME/CFS. I get the impression from the abstract that Emma Williams may be a safe pair of hands when it comes to assisting them cope emotionally. If that impression is borne out in the detail of the thesis, I hope that she will be in a position to contribute to the improvement of psychological support services for people with ME/CFS.
     
    Hutan, Feb 11, 2025
    #4
    geminiqry, Amw66, Joan Crawford and 13 others like this.
  5. Nightsong

    Nightsong Senior Member (Voting Rights)

    Messages:
    948
    Interesting:
     
    Nightsong, Feb 13, 2025
    #5
    Hutan, Dolphin, Sean and 6 others like this.

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