Literature DB >> 33176575

Sick of the Sick Role: Narratives of What "Recovery" Means to People With CFS/ME.

Anna Cheshire1, Damien Ridge1, Lucy V Clark2, Peter D White2.   

Abstract

Little is known about what recovery means to those with chronic fatigue syndrome/myalgic encephalomyelitis, a poorly understood, disabling chronic health condition. To explore this issue, semi-structured interviews were conducted with patients reporting improvement (n = 9) and deterioration (n = 10) after a guided self-help intervention, and analyzed via "constant comparison." The meaning of recovery differed between participants-expectations for improvement and deployment of the sick role (and associated stigma) were key influences. While some saw recovery as complete freedom from symptoms, many defined it as freedom from the "sick role," with functionality prioritized. Others redefined recovery, reluctant to return to the lifestyle that may have contributed to their illness, or rejected the concept as unhelpful. Recovery is not always about eliminating all symptoms. Rather, it is a nexus between the reality of limited opportunities for full recovery, yet a strong desire to leave the illness behind and regain a sense of "normality."

Entities:  

Keywords:  United Kingdom; adaptation; chronic; coping; enduring; experiences; illness and disease; qualitative; recovery

Year:  2020        PMID: 33176575      PMCID: PMC7750673          DOI: 10.1177/1049732320969395

Source DB:  PubMed          Journal:  Qual Health Res        ISSN: 1049-7323


  46 in total

1.  Long-term outcome of cognitive behavior therapy versus relaxation therapy for chronic fatigue syndrome: a 5-year follow-up study.

Authors:  A Deale; K Husain; T Chalder; S Wessely
Journal:  Am J Psychiatry       Date:  2001-12       Impact factor: 18.112

2.  From sick role to narrative subject: An analytic memoir.

Authors:  Arthur W Frank
Journal:  Health (London)       Date:  2015-11-18

Review 3.  Customizing treatment of chronic fatigue syndrome and fibromyalgia: the role of perpetuating factors.

Authors:  Boudewijn Van Houdenhove; Patrick Luyten
Journal:  Psychosomatics       Date:  2008 Nov-Dec       Impact factor: 2.386

Review 4.  A systematic review describing the prognosis of chronic fatigue syndrome.

Authors:  R Cairns; M Hotopf
Journal:  Occup Med (Lond)       Date:  2005-01       Impact factor: 1.611

5.  Loss of self: a fundamental form of suffering in the chronically ill.

Authors:  K Charmaz
Journal:  Sociol Health Illn       Date:  1983-07

6.  Sudden illness and biographical flow in narratives of stroke recovery.

Authors:  Christopher A Faircloth; Craig Boylstein; Maude Rittman; Mary Ellen Young; Jaber Gubrium
Journal:  Sociol Health Illn       Date:  2004-03

7.  Defining and measuring recovery from myalgic encephalomyelitis and chronic fatigue syndrome: the physician perspective.

Authors:  Andrew R Devendorf; Carly T Jackson; Madison Sunnquist; Leonard A Jason
Journal:  Disabil Rehabil       Date:  2017-10-05       Impact factor: 3.033

8.  Overcoming the barriers to the diagnosis and management of chronic fatigue syndrome/ME in primary care: a meta synthesis of qualitative studies.

Authors:  Kerin Bayliss; Mark Goodall; Anna Chisholm; Beth Fordham; Carolyn Chew-Graham; Lisa Riste; Louise Fisher; Karina Lovell; Sarah Peters; Alison Wearden
Journal:  BMC Fam Pract       Date:  2014-03-07       Impact factor: 2.497

Review 9.  Children's experiences of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review and meta-ethnography of qualitative studies.

Authors:  Roxanne M Parslow; Sarah Harris; Jessica Broughton; Adla Alattas; Esther Crawley; Kirstie Haywood; Alison Shaw
Journal:  BMJ Open       Date:  2017-01-13       Impact factor: 2.692

10.  Practice Nurses' views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative study.

Authors:  Carolyn Chew-Graham; Rebecca Dixon; Jonathan W Shaw; Nina Smyth; Karina Lovell; Sarah Peters
Journal:  BMC Nurs       Date:  2009-01-22
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  2 in total

1.  Health, Work, and Family Strain - Psychosocial Experiences at the Early Stages of Long-Term Sickness Absence.

Authors:  Martin I Standal; Vegard S Foldal; Roger Hagen; Lene Aasdahl; Roar Johnsen; Egil A Fors; Marit Solbjør
Journal:  Front Psychol       Date:  2021-03-30

2.  "Communitas in Crisis": An Autoethnography of Psychosis Under Lockdown.

Authors:  Alison Fixsen
Journal:  Qual Health Res       Date:  2021-06-26
  2 in total

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