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Dismissing chronic illness: A qualitative analysis of negative health care experiences, 2019, L. Jason et al

Discussion in 'PsychoSocial ME/CFS Research' started by Trish, Mar 4, 2019.

  1. Trish

    Trish Moderator Staff Member

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    https://www.tandfonline.com/doi/abs/10.1080/07399332.2018.1521811?journalCode=uhcw20

    Journal: Health Care for Women International
    Dismissing chronic illness: A qualitative analysis of negative health care experiences
    Leonard Jason et al.


     
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  2. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Thank you to Lenny Jason and team!

    Did I miss something, or is free access not available?
     
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  3. Lisa108

    Lisa108 Senior Member (Voting Rights)

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  4. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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  5. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Similarly, other chronic illness patient populations such as fibromyalgia and chronic Lyme disease have also experienced a lack of understanding from their HCP. Physicians’ lack of knowledge, lack of medical training, financial pressures on primary care clinicians’ time, complexity of the diseases with similar symptoms, and no medical specialty embracing these diseases have all contributed to a large unmet medical need for patients with neuro-endocrine-immune diseases (Tidmore et al., 2015). Prior research on AIDS, has shown empathy plays an integral role in improving attitudes towards a group of individuals with a stigmatizing illness (Batson et al., 1997). Thus, a patient-centered, empathetic, informed treatment approach would likely be beneficial to improving the doctor–patient relationship, which has been fraught with perceived delegitimization due to a predisposition to psychological diagnoses and treat- ment approaches.
     
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  6. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Also nice to see they're adding this important background information on GET/CBT

    Ascribing illness attributions to a psychological etiology and recommending a course of treatment based on these assumptions could have negative effects on the doctor–patient relationship. In particular, graded exercise therapy (GET) has been recommended, along with cognitive behavioral therapy (CBT), for the treatment of ME and CFS in the UK (Baker & Shaw, 2007). This recommendation was evaluated by the Randomized Evaluation of Pacing, Graded Activity, and Cognitive Behavior Therapy study (i.e. PACE trial), where researchers claimed that patients recovered from CFS following courses of CBT and GET (White et al., 2011). However, the methods of the PACE trial have been widely criticized. One major flaw was that the criteria set for determining recovery were more lenient and specified lower symptom levels than thresholds set for inclusion in the patient group. Independent reanalysis of the data has shown the claims of recovery were not supported (Wilshire, Kindlon, Matthees, & McGrath, 2017). Patients have reported that GET and CBT, rather than helping, caused a deterioration in health (Kindlon, 2011; ME Association,2015). Patient groups have emphasized the effectiveness of approaches that focus on relapse prevention and the mitigation of symptoms. This involves listening to the warning signs their bodies send during exertion, avoiding situations that might cause symptom exacerbation, and pacing themselves (Clements et al., 1997; Denz-Penhey & Murdoch, 1993)—a sharp contrast from the increasing activity prescribed in GET. Pacing and staying within the individual’s energy envelope is one such method that patients have found helpful (Jason et al., 2013).
     
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  7. Amw66

    Amw66 Senior Member (Voting Rights)

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