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The use of mixed methods in studying a chronic illness - Jason & Reed 2015

Bob

Senior Member
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16,455
Location
England (south coast)
The use of mixed methods in studying a chronic illness
Jason LA & Reed J.
9 Jan 2015
Health Psychology and Behavioral Medicine
Vol. 3, Iss. 1, 2015
http://www.tandfonline.com/doi/full/10.1080/21642850.2014.1000908

Abstract
This article explores mixed-method approaches with an illness called myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). Qualitative and Quantitative data were used to investigate the epidemiology of this illness, as well as explore attributions based on the name of the illness, and finally treatment approaches. In each of the domains within the ME and CFS research reviewed, our analyses were richer and our findings ultimately more impactful when we integrated qualitative and quantitative research methods. The use of a multiphase mixed-methods research program provided our team unique vantage points for better understanding social and community issues involving this controversial chronic illness. Furthermore, this approach allowed us to implement the insights gained through an advocacy lens to change policy, recommend and evaluate treatments, and amplify voices within the patient population. In this way, we believe that the practice of methodological pluralism is especially applicable and effective to the study of chronic illness, and believe that other investigators will benefit from the use of these approaches with similar disenfranchised and unfairly treated populations.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
It's more nuanced about CBT than the PACE trial propaganda that's been put out today...
Patient surveys confirm that many patients with this illness are dissatisfied with CBT- or graded exercise-based interventions. For example, one patient survey found that among patients who had received graded exercise therapy, 33.1% felt “much worse” and 23.4% judged themselves to be “slightly worse” (The ME Association, 2010). In addition, Price, Mitchell, Tidy, and Hunot (2008) reviewed 15 studies of CBT with a total of 1043 CFS participants. At treatment's end, 40% of people in the CBT group showed clinical improvement in contrast to only 26% in usual care, but changes were not maintained at a one- to seven-month follow-up when patients who had dropped out were included.
 

Dolphin

Senior Member
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17,567
Example of problems people face:
As an example, many patients mentioned that they experienced negative attitudes such as physician minimization of their illness. Furthermore, many respondents told of their obstacles to securing disability in a climate where the illness encounters disbelief.
 

Dolphin

Senior Member
Messages
17,567
The name and unintended stigma

The effects of stigmatization are often life-altering for persons with ME and CFS, as was evident in our qualitative study mentioned above. Most symptoms are not visibly apparent, which makes it difficult for others to believe in or understand the vast array of debilitating symptoms of patients.Shlaes, Jason, and Ferrari (1999) developed the CFS Attitude Test, as one way of assessing stigma, discrimination and attitudes toward individuals with this illness. They found a relationship between beliefs about the degree to which people with this illness are responsible for their illness, beliefs about the relevance and validity of the illness, and beliefs about the personality traits of patients. For example, if someone believes that people with ME and CFS are responsible for their illness, it is likely that they will also believe that people with this illness have negative personality characteristics, such as being compulsive or overly driven.
 

Dolphin

Senior Member
Messages
17,567
In our third domain, which we reviewed in this article, we suggested that CBT interventions that challenge basic patient illness beliefs do not build an empathic and trusting patient–therapist relationship. We found considerably more support for interventions that used non-stigmatizing approaches, such as the envelope theory. Envelope theory provides an explanation for the limited ability of patients to do work and/or participate in activities based upon an abnormally limited amount of energy available to these patients. That abnormality is physiologically or metabolically based, that is, is organic in origin, and, therefore, much more acceptable (palatable) to patients who do not believe that their illness is“all in their heads”.