How psychiatric referrals influence stigmatization in patients with myalgic encephalomyelitis and chronic fatigue syndrome: Jason et al 2019

[Sly Saint]

How psychiatric referrals influence stigmatization in patients with myalgic encephalomyelitis and chronic fatigue syndrome: An examination of American and British models
Julia Terman, Joseph Cotler, Leonard A. Jason

Article:
Community Psychology in Global Perspective

Abstract

Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are controversial chronic illnesses with a myriad of debilitating symptoms. This study aimed to explore physician referrals to psychiatrists or psychologists, perceived stigma, and estrangement for patients with ME and CFS. Findings indicate that patients who have been referred to psychiatrists are likely to perceive illness stigma and feel estranged from others due to their illness. These relationships are moderated by the country of residence, the United States and the United Kingdom. The implications of physician referrals for people with ME and CFS are discussed.

http://siba-ese.unisalento.it/index.php/cpgp/article/view/20653/17750

 

[Dolphin]

This is the question they used:

Psychiatric Referral. Psychiatric referral was measured with the following yes/no item: “Have you ever been referred to a psychiatrist or psychologist for your physical symptoms?”

 

[Dolphin]

This is how stigma was measured:

Perceived Stigma.

Perceived stigma was measured with the psychological attribution subscale of the ME and CFS Stigma Scale (Terman, Awsumb, Cotler, & Jason, under review).

This subscale measures the perceived stigma of ME and CFS and consists of 5 items on a 4-point Likert scale (1 = Strongly Disagree and 5 = Strongly Agree).

The items from this measure stated,

“1) When people learn that you have been treated for ME or CFS, they begin to search for flaws in your personality;

2) Many people assume that having ME or CFS is a sign of personal weakness;

3) Most people believe that a person with ME or CFS is just as emotionally stable as the average person;

4) Many people assume that a person who suffers from ME or CFS has a deep-seated psychological problem as well;

5) People have a way of associating the occurrence of ME or CFS with psychiatric difficulties”.

The factor demonstrated good internal consistency (α = .80).

 

[Dolphin]

Stigma is often cited as ‘situation of the individual who is disqualified from full social acceptance (Goffman, 1963). This implies that the act of attempting to help the individual through psychiatric referral is limiting their social opportunities, and thus their social standing.

 

[Kitty]

Interesting. I saw several psychiatrists in the early years of my ME (late 1970s and early 80s), which, although I felt a bit baffled by the reason for the referrals, I found to be positive and interesting experiences.

They were also a bit baffled by the referrals, and told me I wasn't suffering from any obvious psychiatric illness. The last one discharged me after just one session, and sent a note to my GP requesting that he refrain from referring me to different clinics in order to get whatever diagnosis he was seeking.

Broadly, their message was, "I can see that you're ill, but I'm afraid I don't know why."

If only more doctors were willing to say that.

 

[Dolphin]

Estrangement.

Estrangement was measured with the estrangement subscale from the ME and CFS Stigma Scale and measures the extent to which patients feel estranged from others due to their illness (Terman et al., under review).

This 6-item measure was rated on 4-point Likert scale (1 = Strongly Disagree and 4 = Strongly Agree) and included the following items,

“1) There is a part of me that only other people who have experienced ME or CFS can understand.,

2) One problem with having ME or CFS is that people don’t believe that you are really ill.,

3) I have sometimes wished that people could see my illness.,

4) Having ME or CFS has made me feel very different from other people.,

5) Most people have no idea what it is like to have ME or CFS.,

6) I often feel totally alone with my illness.”

This factor demonstrated acceptable internal consistency (α = .78).

 

[Dolphin]

Physician Attitudes.

Physician attitudes were measured with the item, “The physician seems to have negative attitudes or beliefs about individuals with ME or CFS.” (Sunnquist, Nicholson, Jason, & Friedman, 2017). Responses were rated on a 5-point Likert scale (1 = NA to 5 = Strongly Agree).

Specialist Attitudes.

Specialist attitudes were measured with the item, “The specialist seems to have negative attitudes or beliefs about individuals with ME or CFS.” (Sunnquist, Nicholson, Jason, & Friedman, 2017). Responses were rated on a 5-point Likert scale (1 = NA to 5 = Strongly Agree).

 

[Dolphin]

2.1. Procedure

Convenience sampling was utilized to recruit participants via patient organization websites, patient advocacy newsletters, internet forums, and social media. Participants had self-reported diagnoses of ME or CFS. The study was approved by the DePaul University Institutional Review Board and participants provided written informed consent before completing an online battery of tests on Research Electronic Data Capture (Hutton, Misajon, & Collins, 2013).

So sample is not likely fully representative of the population. Whether this should matter in comparisons between the two countries, I'm not sure.

 

[Dolphin]

British participants experienced more negative physician attitudes (M = 2.36, SD = 1.07) than Americans (M = 1.68, SD = .82), t(159 ) = -4.41, p < .001, as well as more negative specialist attitudes (M = 2.04, SD = 1.03) than Americans (M = 1.47, SD = .85).

 

[Dolphin]

There was a trending relationship between country of residence and psychiatric referral χ2 (1, N = 312) = 1.96, p = .08. Participants in the United States (62.4%) were 1.82 times more likely to be referred to psychiatrists than participants in Britain (54.5%).

 

[Dolphin]

There was a significant main effect of psychiatric referrals on stigma [F(1,311) = 16.38, p <.001, η2 = .05],

Participants who were referred to a psychiatrist had greater levels of perceived stigma (M = 2.83, SD = .48) than participants who received no psychiatric referral (M = 2.61, SD = .51).

There was a significant main effect of psychiatric referrals on estrangement [F(1,311) = 12.90, p <.001, η2 = .04]

 

[Dolphin]

Findings indicated that patients are at risk for estrangement and high stigma. Stigma can impair help-seeking and predict mental health challenges (Clement et al., 2015; McManimen et al., 2018). Estrangement is also a risk factor for patients because socially isolated individuals may experience loneliness, and loneliness predicts subsequent depression (Cacioppo, Hawkley, & Thisted, 2010; Matthews et al., 2016). Thus, individuals with chronic illness who feel estranged may be at risk for depression (Cacioppo et al., 2010), as well as early mortality (Smith, Jackson, Kobayashi, & Steptoe, 2018).

 

[Dolphin]

The differences between the American and British models may, in part, be explained by different illness profiles and cultural differences. British individuals experience more severe symptomology than Americans across several indicators (Zdunek et al., 2015)*, which may impact their experiences with healthcare providers and peers. It is possible that a patient with more severe symptoms may be treated more negatively by physicians than someone with less severe symptoms, especially if the physician upholds a stigmatizing view of the illness. Another possibility may be due to differences in diagnostic and treatment guidelines between the two countries. In the United Kingdom, the National Institute for Health and Care Excellence (NICE) guidelines for ME and CFS stipulate the cognitive behavioural therapy (CBT) and graded exercise treatment (GET) should be part of the treatment program for patients with ME and CFS (https://www.nice.org.uk/guidance/cg53/chapter/1-Guidance#diagnosis). While this has positive outcomes for patients with depression, patients report that GET often exacerbate symptoms and leaves them feeling more fatigued and more ill than before (Wilshire et al., 2018; Maes & Twisk, 2010). CBT has had more mixed findings, but it has been demonstrated that CBT’s effectiveness is directly tied to patient comorbid diagnosis of depression (Sunnquist & Jason, 2018). While these guidelines are in place for U.K. practitioners, the Institute of Medicine in the U.S. does not have specific guidelines for treating ME or CFS. Attitudes toward the illness and treatment likely differ in Britain compared to America due to these nuanced sets of differences, as has been demonstrated with attitudes toward the cause of ME and CFS (Zdunek et al., 2015). These outcomes highlight the importance of co-production in patient healthcare, as stigmatization in patient healthcare can be reduced through the involvement of patients in planning and implementing their treatment and outcome options (Turakhia & Combs, 2017). Community psychologists can use these findings to identify patients who may be at risk for further social and family estrangement due to false positive referrals, and to help administer proper therapies aimed at reintegration into social settings that negate perceived stigma.

*Zdunek et al., 2015 derived their samples in different ways, so I don't think one can say much with confidence about whether British individuals experience more severe in symptomatology than Americans. In particular, we don't know that the British individuals in the current study were more severely affected than the Americans, from what I recall from this paper

*Zdunek et al., 2015:

3.1.1. DePaul Sample

217 participants from the US sample completed the DSQ and a total of 162 participants were included in the current study, after participants were removed for exclusionary conditions or not meeting the Fukuda et al. [5] criteria. The mean age of the participants was 52.01 (SD=11.5). 85.1% of the participants identified as female and 14.9% identified as male. 97.5% of the sample identified as White with 1.9% identifying as Other and 0.6% as Asian/Pacific Islander. Of the sample, 56.6% of participants identified as married, 23.3% identified as never married, 19.5% identified as divorced, and 0.6% identified as separated. In terms of educational status, 39.8% of participants reported completing a graduate or professional degree, 36.6% reported completing a standard college degree, and 23.6% reported finishing high school or some college. With regards to work status, 55.3% of participants reported that they were on disability at the time of the study, and 11.2% reported working either full-time or part-time.

3.1.2.

Newcastle Sample The UK sample was comprised of 100 participants. Data from 83 participants was used for the present study. The mean age of the 83 participants in the UK sample was 45.9 years (SD=13.6). 80.7% of the sample was female and 19.3% was male. Of the sample, 98.8% identified as White, and 1.2% identified as Other. Fifty-three percent of the sample identified as married, 30.1% identified as never married, 14.5% identified as divorced, and 2.4% identified as separated. Of the sample, 55.4% reported having children, with the mean number of children as 1.7 (SD=1.2). With regard to education level, 20.3% reported having a professional or graduate level degree, 30.4% reported having a college degree, 21.5% of participants reported having completed part of college, 26.9% reported having a high school diploma or less. In terms of work status, 35.3% reported working either full-time or part-time, and 35.4% of the UK’s sample reported being on disability.

 

[Dolphin]

Additionally, though psychiatric referral was obtained via self-report, we could not ascertain which of these referrals could be deemed inappropriate versus appropriate.

 

[Tom Kindlon]

 

[rvallee]

British participants experienced more negative physician attitudes

I know that we have done more good than harm

Bang up job, Simon. You most definitely did not do good, any good at all.