Tag: interview study

“I Just Want to Feel Safe Going to a Doctor”: Experiences of Female Patients with Chronic Conditions in Australia

Abstract:

Background: The androcentric history of medicine and medical research has led to an ongoing sex and gender gap in health research and education. Sex and gender gaps in research and education may translate into real-life health inequities for women. This study aimed to explore the experiences of female patients with chronic health conditions in the Australian health system, considering existing sex and gender gaps in medicine.

Methods: This qualitative study used semistructured in-depth interviews with a sample of adult women with chronic conditions in Australia. Thematic analysis was undertaken, guided by Braun and Clarke. Software NVivoX64 assisted in the management of the data. Coding was performed before grouping into subthemes and central themes. To allow for potential researcher biases, the principal researcher engaged in the practice of reflexivity, including the writing of detailed notes during analysis.

Results: Twenty adult Australian women with chronic conditions were interviewed. Diagnoses were varied and included Ehlers-Danlos syndrome, chronic fatigue syndrome, functional neurological disorder, and inflammatory bowel disease. Four central themes emerged: diagnostic difficulties; spectrum of health care experiences; understanding medical complexity; and coping with symptoms.

Conclusions: Women with chronic conditions in Australia report pain, fatigue, and suffering that significantly impacts upon their daily lives. There was a shared experience of feeling that the pain and suffering of women was dismissed or not taken seriously. Many women expressed trauma because of their experiences in health care and often this led to a fear of accessing health services. The participants highlighted a need for more knowledge, understanding, and empathy from health care practitioners.

Source: Merone L, Tsey K, Russell D, Nagle C. “I Just Want to Feel Safe Going to a Doctor”: Experiences of Female Patients with Chronic Conditions in Australia. Womens Health Rep (New Rochelle). 2022 Dec 22;3(1):1016-1028. doi: 10.1089/whr.2022.0052. PMID: 36636320; PMCID: PMC9811844. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9811844/ (Full text)

A qualitative natural history study of ME/CFS in the community

Abstract:

In previous qualitative research on Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS), researchers have focused on the experiences of patients with ME/CFS in tertiary care samples. This qualitative study examined the natural history of people with ME/CFS (n = 19) from a community-based sample. Findings highlighted multilayered themes involving the illness experience and the physical construction of ME/CFS.

In addition, this study further illuminated unique subthemes regarding community response and treatment, which have implications for understanding the progression of ME/CFS as well as experiences of those within patient networks. There is a need for more longitudinal qualitative research on epidemiological samples of patients with ME/CFS.

 

Source: Anderson VR, Jason LA, Hlavaty LE. A qualitative natural history study of ME/CFS in the community. Health Care Women Int. 2014 Jan;35(1):3-26. doi: 10.1080/07399332.2012.684816. Epub 2013 Feb 27. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4852694/ (Full article)

 

Chronic fatigue syndrome: a follow up study

Abstract:

Forty-six of 47 patients diagnosed as having chronic fatigue and offered treatment four years previously were followed up. Twenty-nine patients were interviewed, three patients refused an interview, and information on the remaining 14 was obtained from their general practitioners. All the instruments used at interview had been used in the initial study. The long-term prognosis for patients with chronic fatigue syndrome who have initially responded to treatment is good. Spontaneous recovery in those who declined or who did not benefit from treatment is unlikely. Patients who continue to fulfil the criteria for chronic fatigue syndrome four years after they were initially diagnosed are likely to have had more somatic disorders, to have been more fatigued, and to have had a previous psychiatric history when they were initially assessed.

Comment in: Chronic fatigue syndrome. [J Neurol Neurosurg Psychiatry. 1995]

 

Source: Bonner D, Ron M, Chalder T, Butler S, Wessely S. Chronic fatigue syndrome: a follow up study. J Neurol Neurosurg Psychiatry. 1994 May;57(5):617-21. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1072927/

You can read the full article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1072927/pdf/jnnpsyc00035-0089.pdf

 

Society, mind and body in chronic fatigue syndrome: an anthropological view

Abstract:

An anthropological view of chronic fatigue syndrome places the study of illness in social context. Data from an interview study of 50 chronically fatigued patients demonstrate the relation of local social worlds–families, workplaces, communities–to the meaning and experience of illness.

Negative life events and difficulties, multiple commitments, and a hectic pace are among prominent themes in the subjects’ local worlds. These themes are reflected in: (1) attributions of illness onset to social sources, (2) the symbolism of the core complaint of fatigue, and (3) an illness-induced, positively valued lifestyle transformation suggesting the rejection of culturally prescribed ‘busyness’.

Dichotomous definitions of the relation of mind and body are shown to be part of culture, not Nature, in the paper’s second section. The ‘mind-body dichotomy’ and the differing values attached to physical and psychological disorders by a naturalistic scientific paradigm explain the delegitimizing experiences of sufferers, who find their illness dismissed as psychosomatic and therefore ‘not real’.

A conceptualization of chronic fatigue syndrome which links local social worlds to psychological distress, felt bodily sensation and biological changes is proposed. Collaborative teams of social scientists and medical researchers might fruitfully pursue aspects of social context in relation to psychiatric, immunological and viral dimensions of the illness.

 

Source: Ware NC. Society, mind and body in chronic fatigue syndrome: an anthropological view. Ciba Found Symp. 1993;173:62-73; discussion 73-82. http://www.ncbi.nlm.nih.gov/pubmed/8491108