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Medical ambivalence and Long Covid: The disconnects, entanglements, and productivities shaping ethnic minority experiences in the UK, 2025, Ridge+

Discussion in 'Long Covid research' started by SNT Gatchaman, Dec 27, 2024.

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  1. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights) Staff Member

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    Medical ambivalence and Long Covid: The disconnects, entanglements, and productivities shaping ethnic minority experiences in the UK
    Ridge; Broom; Alwan; Chew-Graham; Smyth; Gopal; Kingstone; Gaszczyk; Begum

    Structural violence -related to ‘isms’ like racism, sexism, and ableism – pertains to the ways in which social institutions harm certain groups. Such violence is critical to institutional indifference to the plight of ethnic minority people living with long-term health conditions. With only emergent literature on the lived experiences of ethnic minorities with Long Covid, we sought to investigate experiences around the interplay of illness and structural vulnerabilities. Thirty-one semi-structured interviews with a range of UK-based participants of varying ethnic minorities, ages and socio-economic situations were undertaken online between June 2022 and June 2023. A constant comparison analysis was used to develop three over-arching themes: (1) Long Covid and social recognition; (2) The violence of medical ambivalence; and (3) Pathways to recognition and support.

    Findings showed that while professional recognition and support were possible, participants generally faced the spectre and deployment of a particular mode of structural violence, namely ‘medical ambivalence’. The contours of medical ambivalence in the National Health Service (NHS) as an institution had consequences, including inducing or accentuating suffering via practices of care denial. Despite multiple structurally shaped ordeals (like healthcare, community stigma, and sexism), many participants were nevertheless able to gain recognition for their condition (e.g. online, religious communities).

    Participants with more resources were in the best position to ‘cobble together’ their own approaches to care and support, despite structural headwinds.

    Link (Social Science & Medicine) [Open Access]
     
    SNT Gatchaman, Dec 27, 2024
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  2. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights) Staff Member

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    SNT Gatchaman, Dec 27, 2024
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  3. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights) Staff Member

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    SNT Gatchaman, Dec 27, 2024
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  4. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights) Staff Member

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    An additional problem being, of course, that if the inequities were resolved, those unhelpful NHS approaches still apply. No-one with this condition gets adequate care.
     
    SNT Gatchaman, Dec 27, 2024
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  5. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights) Staff Member

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    Good quotes. Someone should probably try to address the problem - perhaps NHS England might like to take a look.
     
    SNT Gatchaman, Dec 27, 2024
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  6. Sean

    Sean Moderator Staff Member

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    Getting ME/CFS or LC already puts you in a minority, both on the general health spectrum, and in the way different patient groups are treated within the health system.
     
    Sean, Dec 27, 2024
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  7. rvallee

    rvallee Senior Member (Voting Rights)

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    There's something distinctly weird about people like Chew-Graham studying the outcome of the very work they spent much of their career pushing, hearing about all the horrible consequences it's had, in what seems to be a relatively fair and accurate framing, and just... stick to it. They never radicalize, they don't even want to change their approach. Must be someone else's fault.

    From time to time you can read glimpses of how this failure is systemic, making it especially too hard to fix in that it's no one else's problem specifically. But the people responsible for the distinct features of this particular systemic failure never seem bothered by it. Humans are so freaking weird.

    There are very good quotes in there. Unlike most research "theme-ifying" participants' input using their own framings that distort what the patients say, this actually mirrors what the patient communities speak of it. It's not a distorted interpretation from the same system that produces this structural violence. Instead it describes a system in a state of total failure, not just because it is failing but because it is 1) incapable of understanding its own failure and 2) is completely unwilling to change from the flawed framework they have been using for decades.

    And still the conclusions are very meek. Like dealing with a systemic crisis of police violence with, perhaps, don't want to bother anyone too much here, but maybe some, and I don't mean you're insensitive to this but, possibly, some sensitivity training might be in order? And other things that won't make one damn bit of difference.

    Because it's one thing to describe total systemic failure, it's a whole other thing to voice it as what it is, despite being a crisis ongoing for several decades. Which is really why it's such a total systemic failure: the system simply refuses any bit of accurate criticism. Just flat out rejects it whole and refuses to change anything at all. And there is nothing on the way that could make that change, because this is a system that decides for itself what it does based on information it wants to be true, offering only fantasy, sometimes violent, where science is incomplete.
     
    rvallee, Dec 27, 2024
    #7
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