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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.
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.
Background
Self-reported outcome instruments in health research have become increasingly important over the last decades. Occupational therapy interventions often focus on occupational balance. However, instruments to measure occupational balance are scarce. The aim of the study was therefore to develop a generic self-reported outcome instrument to assess occupational balance based on the experiences of patients and healthy people including an examination of its psychometric properties.
Methods
We conducted a qualitative analysis of the life stories of 90 people with and without chronic autoimmune diseases to identify components of occupational balance. Based on these components, the Occupational Balance-Questionnaire (OB-Quest) was developed. Construct validity and internal consistency of the OB-Quest were examined in quantitative data. We used Rasch analyses to determine overall fit of the items to the Rasch model, person separation index and potential differential item functioning. Dimensionality testing was conducted by the use of t-tests and Cronbach’s alpha.
Results
The following components emerged from the qualitative analyses: challenging and relaxing activities, activities with acknowledgement by the individual and by the sociocultural context, impact of health condition on activities, involvement in stressful activities and fewer stressing activities, rest and sleep, variety of activities, adaptation of activities according to changed living conditions and activities intended to care for oneself and for others. Based on these, the seven items of the questionnaire (OB-Quest) were developed. 251 people (132 with rheumatoid arthritis, 43 with systematic lupus erythematous and 76 healthy) filled in the OB-Quest. Dimensionality testing indicated multidimensionality of the questionnaire (t = 0.58, and 1.66 after item reduction, non-significant). The item on the component rest and sleep showed differential item functioning (health condition and age). Person separation index was 0.51. Cronbach’s alpha changed from 0.38 to 0.57 after deleting two items.
Conclusions
This questionnaire includes new items addressing components of occupational balance meaningful to patients and healthy people which have not been measured so far. The reduction of two items of the OB-Quest showed improved internal consistency. The multidimensionality of the questionnaire indicates the need for a summary of several components into subscales.