Tag: patient experience

Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)–a case study

Abstract:

OBJECTIVE: To explore obstructions for quality care from experiences by patients suffering from chronic fatigue syndrome (CFS).

METHODS: Qualitative case study with data drawn from a group meeting, written answers to a questionnaire and a follow-up meeting. Purposeful sample of 10 women and 2 men of various ages, recruited from a local patient organization, assumed to have a special awareness for quality care.

RESULTS: CFS patients said that lack of acknowledgement could be even worse than the symptoms. They wanted their doctors to ask questions, listen to them and take them seriously, instead of behaving degrading. Many participants felt that the doctors psychologized too much, or trivialized the symptoms. Participants described how doctors’ lack of knowledge about the condition would lead to long-term uncertainty or maltreatment. Even with doctors who were supportive, it would usually take months and sometimes years until a medical conclusion would be reached, or other disorders were ruled out. Increased physical activity had been recommend, but most of the informants experienced that this made them worse.

CONCLUSION: Current medical scepticism and ignorance regarding CFS shapes the context of medical care and the illness experiences of CFS patients, who may feel they neither get a proper assessment nor management.

PRACTICE IMPLICATIONS: CFS patients’ reports about patronizing attitudes and ignorance among doctors call for development of evidence based strategies and empowerment of patients, acknowledging the patients’ understanding of symptoms and the complex nature of the disease. The NICE guidelines emphasize the need of patient participation and shared decision-making.

Comment in: Qualitative methods in communication and patient education research. [Patient Educ Couns. 2008]

 

Source: Gilje AM, Söderlund A, Malterud K. Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)–a case study. Patient Educ Couns. 2008 Oct;73(1):36-41. doi: 10.1016/j.pec.2008.04.001. Epub 2008 May 16. https://www.ncbi.nlm.nih.gov/pubmed/18486415

 

‘That was my old life; it’s almost like a past-life now’: identity crisis, loss and adjustment amongst people living with Chronic Fatigue Syndrome

Abstract:

Individual in-depth interviews were conducted with 14 people with Chronic Fatigue Syndrome (CFS). The interviews centred on the experience of living with the condition from the participants’ own perspectives. All interviews were transcribed verbatim and were analysed using Interpretative Phenomenological Analysis. Three inter-related themes were presented: ‘Identity crisis: agency and embodiment’; ‘Scepticism and the self’ and ‘Acceptance, adjustment and coping’.

Participants reported an ongoing sense of personal loss characterised by diminishing personal control and agency. An inability to plan for the future and subsequent feelings of failure, worthlessness and insignificance ensued. Scepticism in the wider social environment only heightened the consequential identity crisis. The importance of acceptance for adjusting to a life with CFS was highlighted. The findings are discussed in relation to extant literature and issues for health psychology are raised.

 

Source: Dickson A, Knussen C, Flowers P. ‘That was my old life; it’s almost like a past-life now’: identity crisis, loss and adjustment amongst people living with Chronic Fatigue Syndrome. Psychol Health. 2008;23(4):459-76. doi: 10.1080/08870440701757393. https://www.ncbi.nlm.nih.gov/pubmed/25160579

 

Individuals’ experience of chronic fatigue syndrome/myalgic encephalomyelitis: an interpretative phenomenological analysis

Abstract:

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a condition of unknown aetiology that consists of symptoms such as fatigue, muscle and joint pain, gastric problems and a range of neurological disturbances. Due to the fact that these symptoms are complaints that most individuals will experience to a varying degree, it seems pertinent to investigate the processes by which those with CFS/ME conceptualise their symptoms and the experience of reaching a diagnosis.

Participants were recruited from local CFS/ME support groups. Eight semi-structured telephone interviews were conducted and transcribed, and the verbatim transcriptions were analysed according to interpretative phenomenological analysis (IPA). Six distinct themes were uncovered that illustrated the participants’ experience and perception of their symptoms. These included symptomatology and illness course, interference with daily and working life, frequency of symptoms, external information, diagnosis and treatment.

The findings were discussed in terms of internal and external cues related to symptom perception and the discovery that the possession of a diagnosis did not necessarily signify the end of the journey.

 

Source: Arroll MA, Senior V. Individuals’ experience of chronic fatigue syndrome/myalgic encephalomyelitis: an interpretative phenomenological analysis. Psychol Health. 2008;23(4):443-58. doi: 10.1080/14768320701246469. https://www.ncbi.nlm.nih.gov/pubmed/25160578

 

An ‘overwhelming illness’: women’s experiences of learning to live with chronic fatigue syndrome/myalgic encephalomyelitis

Abstract:

The processes through which people learn to live with CFS/ME are poorly understood and have not been rigorously explored within the literature. Semi-structured interviews were conducted with eight women and analysed using interpretative phenomenological analysis. Participants initially described being ‘overwhelmed’ by CFS/ME. Attempts at seeking help were unsatisfactory and participants described feeling let down and disbelieved.

Participants reacted to this by identifying types of ‘self-help’ and assertively taking more responsibility for their illness and its treatment. Acquiring social support and greater knowledge were key mediating factors in the emergence of control and acceptance. The relevance of the themes to existing research and the implications for clinical practice are considered.

 

Source: Edwards CR, Thompson AR, Blair A. An ‘overwhelming illness’: women’s experiences of learning to live with chronic fatigue syndrome/myalgic encephalomyelitis. J Health Psychol. 2007 Mar;12(2):203-14. https://www.ncbi.nlm.nih.gov/pubmed/17284485

 

Daily hassles reported by chronic fatigue syndrome and fibromyalgia patients in tertiary care: a controlled quantitative and qualitative study

Abstract:

BACKGROUND: This study aimed at providing insight in the frequency, emotional impact and nature of daily hassles, experienced by patients suffering from chronic fatigue syndrome (CFS) and/or fibromyalgia (FM), compared with patients with a chronic organic disease.

METHODS: One hundred and seventy-seven CFS/FM patients, 26 multiple sclerosis (MS) and 26 rheumatoid arthritis (RA) patients were investigated within 2-6 months after diagnosis. All patients completed a self-report questionnaire assessing daily hassles and associated distress, a visual analogue scale assessing fatigue and pain and a depression and anxiety questionnaire.

RESULTS: CFS/FM patients show a higher frequency of hassles, higher emotional impact and higher fatigue, pain, depression and anxiety levels compared with MS/RA patients. Three hassle themes dominate in the CFS/FM group: dissatisfaction with oneself, insecurity and a lack of social recognition. In contrast, hassles reported by MS/RA patients show a much larger diversity and are not focused on person-dependent problems.

CONCLUSIONS: Patients recently diagnosed as suffering from CFS and/or FM are highly preoccupied and distressed by daily hassles that have a severe impact on their self-image, as well as their personal, social and professional functioning. An optimal therapeutic approach of CFS and FM should take account of this heavy psychosocial burden, which might refer to core themes of these patients’ illness experience.

Copyright 2002 S. Karger AG, Basel

 

Source: Van Houdenhove B, Neerinckx E, Onghena P, Vingerhoets A, Lysens R, Vertommen H. Daily hassles reported by chronic fatigue syndrome and fibromyalgia patients in tertiary care: a controlled quantitative and qualitative study. Psychother Psychosom. 2002 Jul-Aug;71(4):207-13. http://www.ncbi.nlm.nih.gov/pubmed/12097786

 

Illness experience, depression, and anxiety in chronic fatigue syndrome

Abstract:

OBJECTIVE: Given the high rate of psychiatric comorbidity with chronic fatigue syndrome (CFS), we considered two possible correlates of anxiety and depression: lack of illness legitimization and beliefs about limiting physical activity.

METHOD: A total of 105 people diagnosed with CFS reported on their experiences with medical professionals and their beliefs about recovery and completed the depression and anxiety subscales of the Brief Symptom Inventory.

RESULTS: Those who said that their physician did not legitimize their illness (36%) had higher depression and anxiety scores (P’s<.05) than their counterparts. Those who believed that limiting their physical exertion was the path to recovery (55%) had lower depression and anxiety scores (P’s<.01) than their counterparts.

CONCLUSION: Lack of illness legitimization ranked high as a source of dissatisfaction for CFS patients, and it may aggravate psychiatric morbidity. Many CFS patients believed that staying within what they felt to be their physical limits would improve their condition. This belief, and possibly an accompanying sense of control over their symptoms, may alleviate psychiatric morbidity.

 

Source: Lehman AM, Lehman DR, Hemphill KJ, Mandel DR, Cooper LM. Illness experience, depression, and anxiety in chronic fatigue syndrome. J Psychosom Res. 2002 Jun;52(6):461-5. http://www.ncbi.nlm.nih.gov/pubmed/12069870

 

Fatigue in chronic fatigue syndrome: a discourse analysis of women’s experiential narratives

Abstract:

Chronic fatigue syndrome (CFS) is a debilitating condition. Approximately 75% of sufferers are women. The etiology of CFS is debated, but remains inconclusive. “Fatigue” is ill defined and conceptually problematic. The international multidisciplinary literature on CFS reveals a paucity of studies on women. Qualitative research to analyze women’s discourses on CFS is virtually absent.

Eleven New Zealand women of European descent with experience of CFS were interviewed in depth. Within the complex facets of CFS, this article reports specifically on an analysis of discourses on “fatigue.”

The predominant theme that emerged was that fatigue is articulated as “lack” or absence, which is not representable as an identifiable entity in biomedical terms. Parallels with chronic pain are briefly drawn. We conclude that approaches to CFS must respond to the diverse and complex constructions of the experience of fatigue evident in women’s narratives.

 

Source: Hart B, Grace VM. Fatigue in chronic fatigue syndrome: a discourse analysis of women’s experiential narratives. Health Care Women Int. 2000 Apr-May;21(3):187-201. http://www.ncbi.nlm.nih.gov/pubmed/11111465