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"The whole of humanity has lungs, doesn't it? We are not all the same sort of people": .. an online..intervention: SELF-BREATHE, 2022, Chalder et al

Discussion in 'Other health news and research' started by Sly Saint, Jul 16, 2022.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    "The whole of humanity has lungs, doesn't it? We are not all the same sort of people": patient preferences and choices for an online, self-guided chronic breathlessness supportive intervention: SELF-BREATHE

    Abstract
    Introduction: The burden of chronic breathlessness on individuals, family, society and health systems is significant and set to increase exponentially with an ageing population with complex multimorbidity, yet there is a lack of services. This has been further amplified by the coronavirus disease 2019 pandemic. Online breathlessness interventions have been proposed to fill this gap, but need development and evaluation based on patient preferences and choices. This study aimed to explore the preferences and choices of patients regarding the content of an online self-guided chronic breathlessness supportive intervention (SELF-BREATHE).

    Methods: Semi-structured telephone interviews were conducted with adults living with advanced malignant and nonmalignant disease and chronic breathlessness (July to November 2020). Interviews were analysed using conventional and summative content analysis.

    Results: 25 patients with advanced disease and chronic breathlessness (COPD n=13, lung cancer n=8, interstitial lung disease n=3, bronchiectasis n=1; 17 male; median (range) age 70 (47-86) years; median (range) Medical Research Council dyspnoea score 3 (2-5)) were interviewed. Individuals highlighted strong preferences for focused education, methods to increase self-motivation and engagement, interventions targeting breathing and physical function, software capability to personalise the content of SELF-BREATHE to make it more meaningful to the user, and aesthetically designed content using various communication methods including written, video and audio content. Furthermore, they identified the need to address motivation as a key potential determinant of the success of SELF-BREATHE.

    Conclusion: Our findings provide an essential foundation for future digital intervention development (SELF-BREATHE) and scaled research.

    https://pubmed.ncbi.nlm.nih.gov/35821758/


     
    Arvo, Hutan, DokaGirl and 1 other person like this.
  2. chrisb

    chrisb Senior Member (Voting Rights)

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    If there are any grandmothers out there with money in their purses, a course on how to suck eggs could be made available.
     
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Sean, Hutan, DokaGirl and 5 others like this.
  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    What we need next is SELF-POO - an online digital intervention for constipation.
    It could relieve a vast amount of suffering.
     
    FMMM1, John Mac, Sly Saint and 23 others like this.
  5. rvallee

    rvallee Senior Member (Voting Rights)

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    And then everyone clapped, I guess. I'm sorry but there is obviously no way this is what patients actually say and want. Zero chance. This is like how the recent PSP on ME/CFS featured exactly no psychosocial priority, yet every cheap study from Chalder or Crawley somehow always only features those. They are putting their own words into people's mouths and it's not even subtle. This reads exactly like fake customer testimonials written by the company owner straight from marketing. They clearly limited discussion to a small set of topics, which happened to be exactly the ones listed above. The fact that BS like this gets published is making a mockery of medical research. You can have healthcare based on science or pseudoscience but you can't have both, they are mutually exclusive.

    Also: that title? Because what was missing from psychosomatic ideology is that it wasn't dripping with condescension enough. It generally hovers around 8-9/10 but this is taking it all the way to 11. I'm not sure it's possible to resist making puppet mouths with their hands while saying it.
     
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  6. Barry

    Barry Senior Member (Voting Rights)

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    :rofl: ... took me a moment to get it,
     
    MEMarge, Sean, Missense and 6 others like this.
  7. cassava7

    cassava7 Senior Member (Voting Rights)

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    shak8, oldtimer, MEMarge and 13 others like this.
  8. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Yet more lumping together patients with a generic symptom that reflects profoundly disparate underlying conditions. Presumably believing that fatigue and pain have be solved, why not do the same for breathlessness.
     
    oldtimer, alktipping, MEMarge and 5 others like this.
  9. Milo

    Milo Senior Member (Voting Rights)

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    Really, addressing motivation in patients with advanced lung cancer? For cancer and non-cancer conditions affecting breathing, there is no lack of motivation to breathing easier. There is only researchers who plant ideas into the mind of these patients and questionnaires that are structured just to support the researchers' conclusions.

    What next? Motivation to live for the dying?
     
  10. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    FMMM1, oldtimer, alktipping and 7 others like this.
  11. Sean

    Sean Moderator Staff Member

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    Yep.
     
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  12. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    I must admit, I don't understand the title of the paper. What have the first half (The whole of humanity has lungs, doesn't it?) and the second half (We are not all the same sort of people) got to do with each other.
     
    FMMM1, oldtimer, alktipping and 8 others like this.
  13. Trish

    Trish Moderator Staff Member

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    Probably randomly chosen quotes from patients as a phoney way of showing they're listening to patients.
     
    ukxmrv, FMMM1, oldtimer and 6 others like this.
  14. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    There's a reference to poo above - that gives a strong indication of the link.
     
    Arnie Pye likes this.

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