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"The responsibility scares me": Exploring the experiences of caregivers to the most severly ill ME-patients

Discussion in 'ME/CFS research news' started by Sly Saint, Sep 4, 2022.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Name of the event: 19th Biennial European Society for Health and Medical Sociology Conference
    Sted: Forli, Italy
    Date from: 25 August 2022
    Date until: 27 August 2022
    Arrangørnavn: European Society for Health and Medical Sociology
    About the result
    Scientific lecture
    Year of publication: 2022

    Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and potentially disabling illness. The severity of the illness varies from those being mildly affected to very severely ill persons living years of their life in bed, in a dark room, avoiding somatosensory, auditory, and visual impulses.

    The illness is regularly subject to controversy, concerning everything from the cause to follow up and treatment. In an ongoing research project we study households affected by ME/CFS, and their experiences.

    There is no cure or effective symptom management for ME/CFS, and the healthcare services consequently have little to offer. This means that informal caregivers take on a major role and responsibility for the ill persons.

    Objective: To describe the experiences of household caregivers to severely ill ME-patients

    Methods: We conducted six focus group interviews with in total 26 persons, supplemented with one individual interview. All, but one focus group interview, was conducted digitally due to the Covid-19 pandemic. Interviews were conducted between February 2020 and June 2021.

    Results: We outline various aspects of the care burden, including emotional and mental strains, social challenges, and financial problems due to partly withdrawal from the labour market. We focus particularly on the experience of providing care for children/adolescents, since most of our study participants do so. The caregiving situation is highly demanding, where caregivers strive to balance realism and hope for the future for persons on the onset of adulthood. Caregivers furthermore have little support from healthcare services. Some even face lacking understanding and distrust.

    Discussions/conclusions: Our study supports the well-known fact that that caring for severely ill persons is demanding in many aspects. In addition, providing care when there is no established treatment or follow up regime, leads to caregivers feeling a burdensome responsibility, making themselves at risk for needing care

    MEMarge, RedFox, boolybooly and 7 others like this.
  2. boolybooly

    boolybooly Senior Member (Voting Rights)

    That last part of the last sentence is a bit garbled.

    "leads to caregivers feeling a burdensome responsibility, making themselves at risk for needing care"

    The first part of the sentence refers to the carers, but the ones who need care are the patients. It is not clear from the translation whether the authors intended to say the carers are risking patients welfare in wanting to care but not knowing how to, or whether patients are risking their own welfare in relying on others who dont know how to care for them.

    Either scenario seems true and I dread the day I have to go into a care environment and explain to my caregivers the management methods and complex do's and don'ts I have developed to optimise quality of life and ask them to assist by following the same methods, especially regarding dietary requirements, when they have no text book to tell them what to do and may end up inadvertantly trying to feed me common foods which makes me worse.

    I trust that carers will listen and cooperate at a personal level but more generally, without reliable medical knowledge its hard for the profession to understand what recommended practices should be when trying to assist an ME CFS patient.
    MEMarge and RedFox like this.
  3. Trish

    Trish Moderator Staff Member

    I took the last sentence to mean that caring long term for a very sick person can affect the health of the carer, meaning they may need care and support too. That seems a reasonable statement to me. 24 hours a day caring for a sick loved one can become too much. I have seen it happen with partners where one has dementia. And with ME the carer may get no external support and be extremely isolated.
    Louie41, MEMarge, RedFox and 5 others like this.
  4. Midnattsol

    Midnattsol Moderator Staff Member

    I read it like Trish does, it makes sense to me from how it would be said in Norwegian.
    Louie41, MEMarge, RedFox and 2 others like this.
  5. boolybooly

    boolybooly Senior Member (Voting Rights)

    Well I did consider that and while it is a compassionate idea, it didn't seem to make sense as its not what I would call a general rule, plus the full stop is missing from the end so it looks like bad editing.

    The situation they are describing is a parental relationship.

    Where care is the process of looking after someone who is ill and thereby incapable and or is a child i.e. not legally responsible for themselves.

    I think what they are trying to say is that carers need support, rather than care which is not the right term in this context (in English).

    I dont think that looking after someone with ME per se will give you ME or otherwise make you ill enough to need care yourself.

    I still think its garbled. :)
    Last edited: Sep 5, 2022
    RedFox likes this.

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