How psychiatric referrals influence stigmatization in patients with myalgic encephalomyelitis and chronic fatigue syndrome: An examination of American and British models


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.


DOI Code: 10.1285/i24212113v5i2p19

Keywords: chronic fatigue syndrome; myalgic encephalomyelitis; stigma

References


Andersson, L. (1986). A model of estrangement—including a theoretical understanding of loneliness. Psychological Reports, 58(3), 683-695. doi:10.2466/pr0.1986.58.3.683

Åsbring, P., & Närvänen, A. (2002). Women's experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia. Qualitative Health Research, 12(2), 148-160. doi:10.1177/104973202129119801

Bayliss, K., Goodall, M., Chisholm, A., Fordham, B., Chew-Graham, C., Riste, L., Fisher, L., Lovell, K., Peters, S., & Aearden, A. (2014). Overcoming the Barriers to the Diagnosis and Management of Chronic Fatigue Syndrome/ME in Primary Care: a Meta Synthesis of Qualitative Studies. BMC Family Practice, 15, (1), 15-44.doi:10.1186/1471-2296-15-44.

Bieber, C., Müller, K. G., Blumenstiel, K., Hochlehnert, A., Wilke, S., Hartmann, M., & Eich, W. (2008). A shared decision-making communication training program for physicians treating fibromyalgia patients: Effects of a randomized controlled trial. Journal of Psychosomatic Research, 64(1), 13-20. doi:10.1016/j.jpsychores.2007.05.009

Cacioppo, J.T., Hawkley, L.C., Thisted, R.A. (2010). Perceived social isolation makes me sad: 5-year cross-lagged analyses of loneliness and depressive symptomatology in the Chicago Health, Aging, and Social Relations Study. Psychology and Aging, 25(2), 453-463. doi:10.1037/a0017216

Carruthers, B.M., Jain, A.K., de Meirleir, K.L., Peterson, D.L., Klimas, N.G., Lerner, A.M., Bested, A.C., Flor-Henry, P., Joshi, P., Powels, P., Sherkey, J.A., & van de Sande, M. I. (2003). Myalgic encephalomyelitis/chronic fatigue syndrome: clinical working case definition, diagnostic and treatment protocols. Journal of Chronic Fatigue Syndrome, 11(1), 7-115. doi:10.1300/J092v11n01_02

Carruthers, B.M., van de Sande, M. I., De Meirleir, K.L., Klimas, N.G., Broderick, G., Mitchell, T., & Stevens, S. (2011). Myalgic encephalomyelitis: International consensus criteria. Journal of Internal Medicine, 270, 327–338. doi: 10.1111/j.1365- 2796.2011.02428.x

Chandratilake, M., McAleer, S., & Gibson, J. (2012). Cultural similarities and differences in medical professionalism: A multi‐region study. Medical Education, 46, 257-266. doi:10.1111/j.1365-2923.2011.04153.x

Chen, J.I., Romero, G.D., & Karver, M.S. (2016). The relationship of perceived campus culture to mental health help-seeking intentions. Journal of Counseling Psychology, 63, 677-684. doi:10.1037/cou0000095

Chronister, J., Chou, C., & Liao, H. (2013). The role of stigma coping and social support in mediating the effect of societal stigma on internalized stigma, mental health recovery, and quality of life among people with serious mental illness. Journal of Community Psychology, 41, 582-600. doi: 10.1002/jcop.21558

Clement, S., Schauman, O., Graham, T., Maggioni, F., Evans-Lacko, S., Bezborodovs, N., Morgan, C., Rüsch, N., Brown, J.S., & Thornicroft, G. (2015). What is the impact of mental health-related stigma on help-seeking? A systematic review of quantitative and qualitative studies. Psychological Medicine, 45(1), 11-27. doi:10.1017/S0033291714000129

Darer, J.D., Hwang, W., Pham, H.H., Bass, E.B., & Anderson, G. (2004). More training needed in chronic care: A survey of US physicians. Academic Medicine, 79, 541-548. doi: 10.1097/00001888-200406000-00009

Deale, A., & Wessely, S. (2000). Diagnosis of psychiatric disorder in clinical evaluation of chronic fatigue syndrome. Journal of the Royal Society of Medicine, 93(6), 310-312. doi:10.1177/014107680009300608

Dickson, A., Knussen, C., & Flowers, P. (2007). Stigma and the delegitimation experience: An interpretative phenomenological analysis of people living with chronic fatigue syndrome. Psychology & Health, 22(7), 851-867. doi:10.1080/14768320600976224

Fertig, A., Roland, M., King, H., & Moore, T. (1993). Understanding variation in rates of referral among general practitioners: are inappropriate referrals important and would guidelines help to reduce rates? BMJ, 307, 1467-1470. doi: 10.1136/bmj.307.6917.1467

Fishbain, D.A., Bruns, D., Disorbio, J.M., Lewis, J.E., & Gao, J. (2010). Exploration of the illness uncertainty concept in acute and chronic pain patients vs community patients. Pain Medicine, 11, 658-669. doi:10.1111/j.1526-4637.2010.00843.x

Fukuda, K., Straus, S.E., Hickie, I., Sharpe, C.M., Dobbins, G.J., Komoroff, A. (1994). The chronic fatigue syndrome: A comprehensive approach to its definition and study. Annals of Internal Medicine, 121, 953–959. doi:10.7326/0003-4819-121-12-199412150-00009

Goffman E. (1963). Stigma: Notes on the management of spoiled identity. London, UK: Penguin.

Green, J., Romei, J., & Natelson, B.H. (1999). Stigma and chronic fatigue syndrome. Journal of Chronic Fatigue Syndrome, 5, 63-95. doi:10.1300/J092v05n02_04

Hayes, A.F. (2017). Introduction to mediation, moderation, and conditional process analysis: A regression-based approach. New York, NY: Guilford Publications.

Hutton, V.E., Misajon, R., & Collins, F.E. (2013). Subjective wellbeing and ‘felt’ stigma when Ikizer, E.G., Ramírez-Esparza, N., & Quinn, living with HIV. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care & Rehabilitation, 22, 65-73. doi:10.1007/s11136-012-0125-7

Ikizer, E.G., Ramírez-Esparza, N., & Quinn, D.M. (2018). Culture and concealable stigmatized identities: Examining anticipated stigma in the United States and Turkey. Stigma and Health, 3, 152-158. doi:10.1037/sah0000082

Ineson, E.M., Lyons, A., & Branston, C. (2006). Cross cultural change, adjustment and culture shock: UK to USA. Tourism: An International Interdisciplinary Journal, 54, 355-365.

IOM (Institute of Medicine). (2015). Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. Washington, DC: The National Academies.

Jason, L.A., Taylor, R.R., Plioplys, S., Stepanek, Z., & Shlaes, J. (2002). Evaluating attributions for an illness based upon the name: Chronic fatigue syndrome, myalgic encephalopathy and Florence Nightingale disease. American Journal of Community Psychology, 30, 133-148. doi:10.1023/A:1014328319297

Jason, L.A., Taylor, R.R., Stepanek, Z., & Plioplys, S. (2001). Attitudes regarding chronic fatigue syndrome: The importance of a name. Journal of Health Psychology, 6, 61-71. doi:10.1177/135910530100600105

Koike, S., Yamaguchi, S., Ojio, Y., Shimada, T., Watanabe, K.I., & Ando, S. (2015). Long-term effect of a name change for schizophrenia on reducing stigma. Social Psychiatry and Psychiatric Epidemiology, 50, 1519-1526. doi: 10.1007/s00127-015-1064-8

Lennon, M.C., Link, B.G., Marbach, J.J., & Dohrenwend, B.P. (1989). The stigma of chronic facial pain and its impact on social relationships. Social Problems, 36, 117-134. doi:10.1525/sp.1989.36.2.03a00020

Looper, K.J., & Kirmayer, L.J. (2004). Perceived stigma in functional somatic syndromes and comparable medical conditions. Journal of Psychosomatic Research, 57, 373-378. doi:10.1016/j.jpsychores.2004.03.005

MacKinnon, D.P., Lockwood, C. M., & Williams, J. (2004). Confidence limits for the indirect effect: Distribution of the product and resampling methods. Multivariate Behavioral Research, 39(1), 99-128. doi: 10.1207/s15327906mbr3901_4

Maes, M., & Twisk, F. (2010). Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a Multisystem Disease, Should Target the Pathophysiological Aberrations (Inflammatory and Oxidative and Nitrosative Stress Pathways), Not the Psychosocial ‘Barriers’ for a New Equilibrium. Patient Education and Counseling, 80(1), 148–149., doi:10.1016/j.pec.2010.02.017.

Matthews, T., Danese, A., Wertz, J., Odgers, C.L., Ambler, A., Moffitt, T.E., & Arseneault, L. (2016). Social isolation, loneliness and depression in young adulthood: A behavioural genetic analysis. Social Psychiatry and Psychiatric Epidemiology, 51, 339-348. doi:10.1007/s00127-016-1178-7

McManimen, S.L., McClellan, D., Stoothoff, J., & Jason, L.A. (2018). Effects of unsupportive social interactions, stigma, and symptoms on patients with myalgic encephalomyelitis and chronic fatigue syndrome. Journal of Community Psychology. doi:10.1002/jcop.21984

Morris, G., Berk, M., Galecki, P., & Maes, M. (2014). The emerging role of autoimmunity in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Molecular Neurobiology, 49, 741-756. doi:10.1007/s12035-013-8553-0

Peterson, T.M., Peterson, T.W., Emerson, S., Regalbuto, E., Evans, M.A., & Jason, L.A. (2013). Coverage of CFS within US medical schools. Universal Journal of Public Health, 1, 177-179.

Preacher, K.J., & Hayes, A.F. (2004). SPSS and SAS procedures for estimating indirect effects in simple mediation models. Behavior Research Methods, Instruments, and Computers, 36, 717-731. doi: 10.3758/BF03206553

Preacher, K.J., & Hayes, A. F. (2008). Asymptotic and resampling strategies for assessing and comparing indirect effects in multiple mediator models. Behavior Research Methods, 40, 879-891. doi: 10.3758/BRM.40.3.879

Qiu, L., Yang, Q., Tong, Y., Zuxun, L., Gong, Y., & Yin, X. (2018). The Mediating Effects of Stigma on Depressive Symptoms in Patients With Tuberculosis: A Structural Equation Modeling Approach. Frontiers in Psychiatry, 9(618). doi:10.3389/fpsyt.2018.00618.

Shlaes, J.L., Jason, L.A., & Ferrari, J.R. (1999). The development of the chronic fatigue syndrome attitudes test. Evaluation & The Health Professions, 22, 442-465. doi:10.1177/01632789922034400

Smith, S.G., Jackson, S.E., Kobayashi, L.C., & Steptoe, A. (2018). Social Isolation, Health Literacy, and Mortality Risk: Findings From the English Longitudinal Study of Ageing. Health Psychology. http://dx.doi.org/10.1037/hea0000541

Sunnquist, M., Jason, L.A., Nehrke, P., & Goudsmit, E.M. (2017). A comparison of case definitions for myalgic encephalomyelitis and chronic fatigue syndrome. Journal of Chronic Diseases and Management, 2(2), 1013.

Sunnquist, M., & Jason, L.A. (2018). A Reexamination of the Cognitive Behavioral Model of Chronic Fatigue Syndrome. Journal of Clinical Psychology, 74(7), 1234–1245. doi:10.1002/jclp.22593.

Sunnquist, M., Nicholson, L., Jason, L.A., & Friedman, K.J. (2017). Access to medical care for individuals with myalgic encephalomyelitis and chronic fatigue syndrome: A call for centers of excellence. Modern Clinical Medicine Research, 1, 28. doi: 10.22606/mcmr.2017.11005

Terman, J.M., Awsumb, J.M., Cotler, J., & Jason, L.A. (2018). Confirmatory Factor Analysis of a Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Stigma Scale. Manuscript submitted for publication.

Turakhia, P., & Combs, B. (2017). Using Principles of Co-Production to Improve Patient Care and Enhance Value. AMA Journal of Ethics, 19(11), 1125–1131. doi:10.1001/journalofethics.2017.19.11.pfor1-1711.

Werner, A., & Malterud, K. (2003). It is hard work behaving as a credible patient: Encounters between women with chronic pain and their doctors. Social Science and Medicine, 57(8), 1409-1419. doi: 10.1016/s0277-9536(02)00520-8

Wilshire, C., Kindol, T., Courtney, R., Matthees, A., Tuller, D., Geraghty, K., & Levin. (2018). Rethinking the Treatment of Chronic Fatigue Syndrome—a Reanalysis and Evaluation of Findings from a Recent Major Trial of Graded Exercise and CBT. BMC Psychology, 6,(1). doi:10.1186/s40359-018-0218-3.

Zdunek, M., Jason, L.A., Evans, M., Jantke, R., & Newton, J.L. (2015). A cross cultural comparison of disability and symptomatology associated with CFS. International Journal of Psychology and Behavioral Sciences, 5, 98. doi: 10.5923/j.ijpbs.20150502.07


Full Text: PDF

Refbacks

  • There are currently no refbacks.


Creative Commons License
This work is licensed under a Creative Commons Attribuzione - Non commerciale - Non opere derivate 3.0 Italia License.