Ethical considerations - Care and support needs

4.9 Care and support needs

5.1.2 Ethical considerations

When designing the study, some specific ethical considerations had to be made concerning the physical and emotional vulnerability of this patient group. Focus group interviews were considered, but due to the cognitive problems experienced by CFS-sufferers, it quickly became clear that two hours of intensive discussion in a group of 6-8 people could significantly increase the risk of sudden energy

‘crashes’ among participants, and would therefore not be ethically sound. Furthermore, the fact that many participants were brought out of balance emotionally by the interview topics (see above), confirmed the choice of individual interviews over focus groups, in which discussions of such topics might have caused considerable embarrassment and unease of participants, and thus directed the conversation away from personal experiences towards more general issues. Individual interviews were thus chosen instead. However, because of participants eagerness to recount their experiences and the sometimes sensitive topics touched upon, the interviews often became longer than intended (between 1,5 and 2,5 hours). Although the interviewer asked participants to feel free to ask for breaks during the interview, none of them used this opportunity, perhaps because of the busy, ‘business-like’ atmosphere of the office setting. The duration of the interviews and the emotional strain of recounting stressful and painful experiences might thus have caused (temporary) deterioration in the health of participants.

From a more general perspective, examining the needs of a vulnerable patient group, whose health condition are not (yet) fully recognised by many actors in the health care and social service systems create a larger ethical responsibility on the researcher to. On the one hand, the primary study only examines experiences of sufferers – no attempt has been made to validate these experiences through observations or quantitative assessments of the problems and needs stated – and their perceived needs.

Although the findings are largely confirmed by findings in the literature, negative experiences of a limited number of patients could potentially bias the results of the analysis. On the other hand, the support and care needs of sufferers would be partly dependent on exactly how they perceive their problems and their needs. Had the researcher placed less weight on negative experiences or attributed these to frustration and negative emotions which are normal for people with chronic illnesses, the result could have been a report which would understate the specific problems associated with not having accessible, effective treatments, and at the same time not having one’s suffering recognised by other people. Careful considerations have therefore been made throughout the analysis to make sure that both positive and negative findings are reported with the same proportion as they were found in participants’

statements and in the literature.

6 CONCLUSION

This analysis has identified some care and support needs, which are specifically relevant to CFS-sufferers in Québec:

Firstly, the lack of recognition and/or knowledge of CFS among professionals in the Québec health care and social service systems has consequences for CFS-sufferers in several ways: It delays the diagnosis and pertinent treatment of symptoms, which could possibly have a negative impact on the long-term prognosis of the illness. Furthermore, it reinforces the stigma surrounding CFS, which can trigger sufferers’ use of unbeneficial coping strategies like withdrawal and concealment. The suspicion of malingering is in itself stressful and frustrating, and adds to the emotional burden of the illness. Education of health care and social service professionals could ensure more widespread recognition of the illness, and ultimately enable a better coordination of the diagnostic process and subsequent symptom treatment.

Secondly, and connected to the lack of recognition and/or knowledge of CFS, is the fact that the illness is not recognised as a disabling health condition in the Québec social insurance system, which restricts sufferers’ possibilities of accessing financial support from the government. Sufferers, who are unable to work and have no personal savings or private health insurance, are thus only eligible for social welfare (in the category of ‘severe constraints’). Since the social welfare allowance often does not cover their living expenses and special needs for medication, transportation etc., many have financial problems or become economically dependent on relatives or partners following the onset of illness. Furthermore, they have to re-apply for social welfare with short intervals, a process which is stressful, energy consuming and not in concordance with the chronic nature of the illness. More flexible rules for obtaining disability allowance, perhaps specifically linking CFS with a temporary status as disabled, along with interventions to help guide sufferers back to work without relapsing, might improve the possibilities of sufferers to recover. Structured work rehabilitation interventions for CFS-sufferers have recently been initiated in the UK by private insurance companies, and are currently being assessed as part of a large, randomised controlled trial, with promising preliminary results.²⁶

Finally, some Québec CFS-sufferers use specific coping strategies which seem to be beneficial to them, such as staying active in spite of their symptoms, visualising their illness through work sheets and tables, and focusing on positive aspects of their illness. Furthermore, they emphasize the importance of coming to terms with the illness, without letting it assume too much space in their lives, and of avoiding negative thinking concerning their physical capacities. Interestingly, according to the integrated model (see Introduction), maintaining activity and avoiding negative thinking are central components to the cognitive behavior therapy, which is considered essential to the

management of CFS. It therefore seems that the Québec context might contain specific cultural norms and values, which could make cognitive behavior therapy particularly useful and relevant.

However, Québec sufferers also make use of coping strategies like withdrawal and concealing their illness in order to avoid stigma, which can be unbeneficial because they can increase their isolation and the disbelief of others. Psychological support and/or professionally lead support groups could therefore be relevant interventions, not only to prevent isolation and stigma and help sufferers deal with negative emotions, but also to support their use of more beneficial coping strategies.

26. The PACE trial (conference presentation January 22, 2009 by Sally Wagner, St. Bartholomew’s CFS/ME Service).

APPENDIX A

LITERATURE SEARCH

Search strategy

Databases:

Campbell Collaboration Library of Systematic Reviews, Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews (DARE), Cochrane Central Registry of Controlled Trials,

PubMed, EMBASE, CINAHL, Anthrosource, SAGE publications, ERIC, Sociological Abstract, Repère, Sociology: a SAGE Full-Text Collection, Francis, CBCA Complete, PsychINFO/Psychlit, Social Services Abstracts (CSA), Banque sur la recherche sociale et en santé, Social Work Reference Library on CD-ROM.

Journals:

Journal of Patient Education and Counselling, Canadian Review of Sociology and Anthropology, Medical Anthropology, Medical Anthropology Quarterly.

Grey literature:

Theses from anthropology, sociology and psychology on CFS-patients; relevant conference, symposium and colloquium proceedings and abstracts (e.g. International Conference on ME/CFS) Non scientific literature:

Newsletters and other relevant publications from ME/CFS support organisations in Québec; patient testimonials from Québec patient organisations, Internet search engines (Google Scholar).

Years:

The databases were searched from 1994, since this was the year the US Centre of Disease and Prevention first published their criteria for diagnosing CFS [Fukuda et al., 1994], and up to 2008.

Inclusion and exclusion criteria

English and French language case-control studies, cohort studies, controlled before-and-after studies and empirical qualitative studies on the experiences of CFS-sufferers and their perceived needs for support and care were included. Studies on the treatment of CFS with graded exercise therapy, cognitive behaviour therapy and various pharmacological interventions were excluded, since these types of intervention were included in another part of the evaluation. Studies on prevalence, psychological and physical co-morbidities, diagnostic criteria, possible causes as well as studies on physicians’ perspectives on treatment of CFS were also excluded.

Searches performed

Health Sciences: A Sage Full-Text Collection Chronic fatigue syndrome – qualitative studies Search performed on July 16, 2008

Years included: from 1994 to 2008

#1 chronic fatigue syndrome OR myalgic encephalomyelitis OR akureyi disease* OR chronic epstein barr virus OR cfids OR chronic fatigue and immune dysfunction syndrome* OR chronic mononucleosis OR effort syndrome* OR Iceland* disease* OR

low natural killer cell syndrome* OR neuromyasthenia OR post viral fatigue syndrome*

OR postviral fatigue syndrome* OR post viral syndrome* OR postviral syndrome* OR post infectious fatigue OR postinfectious fatigue OR raggedy ann* syndrome* OR royal free disease* OR royal free epidemic* OR royal free hospital disease* OR tapanui disease* OR yuppie flu OR yuppy flu OR chronic infectious mononucleosis like syndrome* OR CFS OR myalgic encephalopathy OR ME.ti.

#2 psychological OR social functionning OR illness experience OR patient experience OR activity of daily living OR employment OR coping strategies OR rehabilitation OR on-line support OR support groups OR counselling OR patient satisfaction OR adaptation OR online support OR self-help group* OR self care

#3 canadien* OR canadian* OR Québec* OR qualitative research OR qualitative method*

OR meta-analysis OR anthropological OR ethnographical OR sociological

#4 #1 AND #2 AND #3 73 references

Sociology : A Sage Full-Text Collection

Chronic fatigue syndrome – qualitative studies Search performed on July 16, 2008

Years included: from 1994 to 2008

#3 canadien* OR canadian* OR Québec* OR qualitative research OR qualitative method*

OR meta-analysis OR anthropological OR ethnographical OR sociological

#4 #1 AND #2 AND #3 26 references

Sociological Abstracts

Chronic fatigue syndrome – qualitative studies Search performed on July 16, 2008

Years included: from 1994 to 2008

#1 chronic fatigue syndrome OR myalgic encephalomyelitis OR akureyi disease* OR chronic epstein barr virus OR cfids OR chronic fatigue and immune dysfunction

syndrome* OR chronic mononucleosis OR effort syndrome* OR Iceland* disease* OR low natural killer cell syndrome* OR neuromyasthenia OR post viral fatigue syndrome*

#3 canadien* OR canadian* OR Québec* OR qualitative research OR qualitative method*

OR meta-analysis OR anthropological OR ethnographical OR sociological

#4 #1 AND #2 AND #3 4 references (#1)

Social Services Abstracts

Chronic fatigue syndrome – qualitative studies Search performed on July 16, 2008

Years included: from 1994 to 2008

#3 canadien* OR canadian* OR Québec* OR qualitative research OR qualitative method*

OR meta-analysis OR anthropological OR ethnographical OR sociological

#4 #1 AND #2 AND #3 31 references (#1)

PsycINFO

Chronic fatigue syndrome – qualitative studies Search performed on July 16, 2008

Years included: from 1994 to 2008

#1 fatigue syndrome, chronic/ OR (chronic fatigue syndrome OR myalgic encephalomyelitis OR akureyi disease* OR chronic epstein barr virus OR cfids OR (chronic fatigue and immune dysfunction syndrome*) OR chronic mononucleosis OR effort syndrome* OR Iceland* disease* OR low natural killer cell syndrome$ OR neuromyasthenia OR post viral fatigue syndrome* OR postviral fatigue syndrome* OR post viral syndrome* OR postviral syndrome* OR post infectious fatigue OR postinfectious fatigue OR raggedy ann* syndrome* OR royal free disease* OR royal free epidemic* OR royal free hospital disease* OR tapanui disease* OR yuppie flu OR yuppy flu OR chronic infectious mononucleosis like syndrome* OR CFS OR myalgic encephalopathy).ti,ab. OR ME.ti.

#3 canadien* OR canadian* OR Québec* OR qualitative research OR qualitative method*

OR meta-analysis OR anthropological OR ethnographical OR sociological

#4 #1 AND #2 AND #3 147 references

FRANCIS

Chronic fatigue syndrome – qualitative studies Search performed on July 16, 2008

Years included: from 1994 to 2008

#3 canadien* OR canadian* OR Québec* OR qualitative research OR qualitative method*

OR meta-analysis OR anthropological OR ethnographical OR sociological

#4 #1 AND #2 AND #3 13 references

ERIC

Chronic fatigue syndrome – qualitative studies Search performed on July 16, 2008

Years included: from 1994 to 2008

#3 canadien* OR canadian* OR Québec* OR qualitative research OR qualitative method*

OR meta-analysis OR anthropological OR ethnographical OR sociological

#4 #1 AND #2 AND #3 14 references

CBCA Complete

Chronic fatigue syndrome – qualitative studies Search performed on July 16, 2008

Years included: from 1994 to 2008

#3 canadien* OR canadian* OR Québec* OR qualitative research OR qualitative method*

OR meta-analysis OR anthropological OR ethnographical OR sociological

#4 #1 AND #2 AND #3 33 references

Repère

Chronic fatigue syndrome – qualitative studies Search performed on July 16, 2008

Years included: from 1994 to 2008

#1 syndrome fatigue chronique OU myalgie OU Epstein-barr OU fatigue chronique 27 references

Embase via Dialog

Chronic fatigue syndrome – qualitative studies Search performed on July 16, 2008

Years included: from 1994 to 2008

#1 chronic fatigue syndrome/de OR (chronic fatigue syndrome OR myalgic

encephalomyelitis OR akureyi disease$ OR chronic epstein barr virus OR cfids OR (chronic fatigue and immune dysfunction syndrome$) OR chronic mononucleosis OR effort syndrome$ OR iceland$ disease$ OR low natural killer cell syndrome$ OR neuromyasthenia OR post viral fatigue syndrome$ OR postviral fatigue syndrome$ OR post viral syndrome$ OR postviral syndrome$ OR post infectious fatigue OR

postinfectious fatigue OR raggedy ann? syndrome$ OR royal free disease$ OR royal free epidemic$ OR royal free hospital disease$ OR tapanui disease$ OR yuppie flu OR yuppy flu OR chronic infectious mononucleosis like syndrome$ OR CFS OR myalgic

encephalopathy).ti,ab. OR ME.ti.

#2 psychological OR social functionning OR illness experience OR patient experience OR patient satisfaction OR activity of daily living OR employment OR coping strategies OR coping behaviour OR rehabilitation OR on-line support OR online support OR support group? OR counseling OR self help OR self care/de,ti,ab,id

#3 canadien? OR canadian? OR Québec? OR qualitative research OR qualitative method?

OR meta analysis OR anthropological OR ethnographical OR sociological/de,id,ti,ab

#4 #1 AND #2 AND #3 15 references

Grey literature

For the grey literature search, Google, Google Scholar, AlltheWeb and Scirus were used. Concerning the search strategy, the keywords used were: ("chronic fatigue syndrome" or "chronic fatigue" or fatigue or fibromyalgia or "myalgic encephalomyelitis") and guidelines or review.

These websites were last visited in May 2008.

Centre for Reviews and Dissemination: www.crd.york.ac.uk/crdweb/

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