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- Rheumatoid arthritis (3) (remove)
Introduction:
Occupation-based approaches are a hallmark of excellence in occupational therapy practice. This article focuses on the disjuncture between how women with rheumatoid arthritis go about their daily lives, that is to say their occupations, and what is addressed during routine visits at a specialized rheumatology outpatient clinic.
Method:
Institutional ethnography was employed as a method of inquiry to identify the occupations and related issues that were or were not accounted for in health records and addressed within institutional processes. Interviews and participant observations were conducted with seven women with rheumatoid arthritis who were mothers. Hospital records were analysed as texts mediating between the women's daily lives and the rheumatology outpatient clinic.
Findings:
The analysis revealed that despite the diversity in the ways that the women managed their daily lives, the things that they did were viewed, understood, and addressed only within the boundaries of the standardizing relations that ruled practice in this clinical setting. Institutional processes grounded in biomedical concepts such as functional status or disease activity, as well as clinical assessments that depict these concepts, both shape and limit opportunities for occupational therapists to advance and enact occupation-based practice.
Conclusion:
In this setting, the complexity of the participants' daily lives and the occupations they engage in remain unaddressed.
Objective: The aim of the present study was to explore how contextual factors affect the everyday activities of women and men with rheumatoid arthritis (RA), as evident in their life stories.
Methods: Fifteen people with RA, who had retired early due to the disease, were interviewed up to three times, according to a narrative biographic interview style. The life stories of the participants, which were reconstructed from the biographical data and from the transcribed ‘told story’ were analysed from the perspective of contextual factors, including personal and environmental factors. The rigour and accuracy of the analysis were enhanced by reflexivity and peer‐review of the results.
Results: The life stories of the participants in this study reflected how contextual factors (such as gender, the healthcare system, the support of families and social and cultural values) shaped their everyday activities. In a society such as in Austria, which is based on traditional patriarchal values, men were presented with difficulties in developing a non‐paid‐work‐related role. For women, if paid work had to be given up, they were more likely to engage in alternative challenging activities which enabled them to develop reflective skills, which in turn contributed to a positive and enriching perspective on their life stories. Health professionals may thus use some of the women's strategies to help men.
Conclusion: Interventions by health professionals in people with RA may benefit from an approach sensitive to personal and environmental factors.
Negotiating disability in everyday life: Ethnographical accounts of women with rheumatoid arthritis
(2014)
Purpose: Drawing on data from a larger study, the aim of this paper is to illuminate how the everyday doings of women with disabilities are coordinated to and shaped by organizational processes and social context, particularly as these relate to the potential of being labelled disabled.
Methods: An institutional ethnography was conducted with seven Austrian women diagnosed with rheumatoid arthritis (RA). Interviews and participant observations were conducted, and texts about the historical development of disability policies were identified. Data analysis included grouping similar doings of participants together to subsequently explore links between what the women did and how their doings are shaped by disability policies and the social context.
Results: The women, who participated in this study, spent time and effort to keep the disease invisible, resist disability and negotiate a disability pass. By drawing upon the historical development of Austrian disability policies, the interpretation reveals how this development infiltrates into participants’ lives and shapes their everyday doing.
Conclusion: This study furthers understanding of how broader policies and practices, shaped over historical time, infiltrate into the daily lives of women with disabilities. It illustrates how full participation may not necessarily be a lived reality for people with disabilities at this point in Austria.
Implications for Rehabilitation
Maximising full participation for people with rheumatoid arthritis is important.
This requires focusing not only on the bodily health of people with rheumatoid arthritis but also on their interaction with the social, cultural and political context in their daily lives.
This requires also understanding how knowledge about disability is passed on from previous generations.