Tag: patient attitudes

Children and adolescents with Chronic Fatigue Syndrome in non-specialist settings: beliefs, functional impairment and psychiatric disturbance

Abstract:

BACKGROUND: Adolescents with Chronic Fatigue Syndrome (CFS) seen in specialist centres have substantial psychological and functional impairment. Beliefs about activity levels may be important in the development of CFS.

METHOD: The aim was to investigate psychological and functional impairment, and beliefs in children and adolescents with CFS recruited from non-specialist services. A total of 30 such individuals participated, and 30 young people with Inflammatory Bowel Disease (IBD) formed the comparison group.

RESULTS: Emotional symptoms and disorder were high in both groups. In all, 50% of those with CFS and 30% with IBD reached the threshold for emotional disorder according to the Strengths and Difficulties Questionnaire (SDQ) parent report, although this difference did not reach statistical significance. Participants with CFS scored statistically significantly higher on measures of functional impairment, including school non-attendance, compared to those with IBD. According to questionnaire responses, those with CFS were statistically significantly more likely to favour rest rather than exercise compared to those with IBD. Comparison of parental beliefs did not show such a difference.

CONCLUSIONS: These young people with CFS were at high risk of psychiatric disorder. They were substantially disabled when compared to individuals with a known chronic illness. Also, as a group, they were characterised by a preference for rest rather than exercise.

 

Source: Richards J, Turk J, White S. Children and adolescents with Chronic Fatigue Syndrome in non-specialist settings: beliefs, functional impairment and psychiatric disturbance. Eur Child Adolesc Psychiatry. 2005 Sep;14(6):310-8. http://www.ncbi.nlm.nih.gov/pubmed/16220215

 

Manual-based cognitive behaviour therapy for chronic fatigue syndrome: therapists’ adherence and perceptions

Abstract:

Several randomized controlled trials have indicated that cognitive behaviour therapy is an effective treatment for chronic fatigue syndrome. In 1 of these studies 13 therapists applied cognitive behaviour therapy for chronic fatigue syndrome in 83 chronic fatigue syndrome patients.

In the present study therapists’ adherence and perceptions of the manual are studied. Following completion of the study the therapists were asked to complete a questionnaire. Audiotaped sessions were conducted to verify the therapists’ adherence. Analyses of the audiotapes showed that in 87% of the sessions this appeared to be the case.

The questionnaire revealed that the therapists found it more difficult to treat patients with chronic fatigue syndrome than to treat patients with psychological or other physical problems. Treatment aspects posing the most problems were integrating individual problems into the standardized treatment, dealing with the patients’ lack of confidence in the treatment and handling insufficient motivation.

 

Source: Bazelmans E, Prins JB, Hoogveld S, Bleijenberg G. Manual-based cognitive behaviour therapy for chronic fatigue syndrome: therapists’ adherence and perceptions. Cogn Behav Ther. 2004;33(3):143-50. http://www.ncbi.nlm.nih.gov/pubmed/15471384

 

From a lived body to a medicalized body: diagnostic transformation and chronic fatigue syndrome

Abstract:

This paper addresses the diagnostic dilemma posed by chronic illness that offers no demonstrable evidence of serious physical disorders or pathology. Is a diagnosis such as chronic fatigue syndrome (CFS) disabling because it encourages people to identify with it? Does it become a self-fulfilling prophecy? In providing people with a name, and thus allowing them to confirm the legitimacy of their suffering, a diagnosis of CFS may help them to relate to their world and, hence, facilitate their recovery.

One of the most relevant questions pertaining to a diagnosis of CFS concerns how people deal with suffering when it does not come with a biomedically established pathology. I draw upon material provided by 21 men and women diagnosed with CFS. My analysis concerns the ambivalence involved in the diagnostic process and its implications for the relationship between self-identity and chronicity.

Comment in: Transformations and reformulations: chronicity and identity in politics, policy, and phenomenology. [Med Anthropol. 2001]

 

Source: Sachs L. From a lived body to a medicalized body: diagnostic transformation and chronic fatigue syndrome. Med Anthropol. 2001;19(4):299-317. http://www.ncbi.nlm.nih.gov/pubmed/11800317

Doing things with illness. The micro politics of the CFS clinic

Abstract:

This paper focuses on lay and professional ideas about the nature of chronic fatigue syndrome (CFS), and in particular, the ways in which understandings of the disorder are developed in a clinical setting. Our data are drawn from observations of consultations between sufferers and physicians in a UK medical out-patients clinic.

We treat the clinic as a political field. That is to say, as an arena in which ‘problems’ (about the management of illness) are constituted, and alternative approaches and solutions to such problems are pressed. We note that in the realms of symptoms, aetiology and treatment evaluation, lay people in the CFS clinic have quite distinct ideas about what their problems are and how they might be analysed and managed–ideas that are often in conflict with those of medical professionals.

Thus, lay sufferers, for example, operate within a different conceptual terrain from that of many professional experts. They are more likely to refer to a disease (myalgic encephalomyelitis or ME), rather than a syndrome. They call upon different kinds of hypotheses to explain their symptoms. They hold to conflicting ideas about the order of causal sequences, and they give emphasis to different kinds of phenomena in their accounts of illness.

As a consequence, clinical consultations can often take on the form of a political contest between physician and patient to define the true and real nature of the patient’s disorder–a micro political struggle in which neurological symptoms can be re-framed as psychiatric symptoms, and psychiatric symptoms as neurological. In short, a contest in which the demarcation lines between mind and body are continually assessed and re-defined, and the tenets of ‘biomedicine’ are constantly challenged.

 

Source: Banks J, Prior L. Doing things with illness. The micro politics of the CFS clinic. Soc Sci Med. 2001 Jan;52(1):11-23. http://www.ncbi.nlm.nih.gov/pubmed/11144910

 

Patterns of utilization of medical care and perceptions of the relationship between doctor and patient with chronic illness including chronic fatigue syndrome

Abstract:

To what extent do personal constructs affect the relationship between doctor and patient when the ill patient does not readily recover with treatment?

Questionnaires were returned anonymously by 609 patients with a self-reported diagnosis of chronic fatigue syndrome, who were considered chronically ill. Findings were compared with those of an earlier study of a population of 397 general medical patients.

The chronically ill patients lost an average of 65 days of work per year due to illness compared to general medical patients who missed six or fewer days per year because they were ill. The chronically ill patients also reported a 66% higher frequency of iatrogenic illness, spent more money on health care, took more medication, saw more specialists, and were more litigious than the general medical population.

Research suggested several patterns of relationships between doctors and patients, and attitudes to health and illness, which may alert doctors to patients’ perceptions, beliefs, encoded constructs, and patterns of relating that affect responses to treatment. More attention by doctors to patients who are experiencing the stress of chronic illness is indicated.

 

Source: Twemlow SW, Bradshaw SL Jr, Coyne L, Lerma BH. Patterns of utilization of medical care and perceptions of the relationship between doctor and patient with chronic illness including chronic fatigue syndrome. Psychol Rep. 1997 Apr;80(2):643-58. http://www.ncbi.nlm.nih.gov/pubmed/9129381

 

Diagnosis in chronic illness: disabling or enabling–the case of chronic fatigue syndrome

Abstract:

This paper examines doctors’ and patients’ views on the consequences of an increasingly common symptomatic diagnosis, chronic fatigue syndrome (CFS).

Two studies were conducted: the first comprised interviews with 20 general practitioners; the second was a longitudinal study, comprising three interviews over a period of 2 years with 50 people diagnosed with CFS. Contrasts were apparent between doctors’ practical and ethical concerns about articulating a diagnosis of CFS and patients’ experiences with and without such a diagnosis.

Seventy per cent of the doctors were reluctant to articulate a diagnosis of CFS. They felt constrained by the scientific uncertainty regarding its aetiology and by a concern that diagnosis might become a disabling self-fulfilling prophecy. Patients, by contrast, highlighted the enabling aspects of a singular coherent diagnosis and emphasized the negative effects of having no explanation for their problems.

Comment in: Diagnosis in chronic illness. [J R Soc Med. 1995]

 

Source: Woodward RV, Broom DH, Legge DG. Diagnosis in chronic illness: disabling or enabling–the case of chronic fatigue syndrome. J R Soc Med. 1995 Jun;88(6):325-9. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1295234/ (Full article)