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The dynamic nature of participation - Experiences, strategies and conditions for occupations in daily life amongst persons with late effects of polio

机译：参与的动态性质 - 脊髓灰质炎晚期患者日常生活中的职业经历，战略和条件

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Aim: The overall aim of this thesis was to explore the conditions for daily occupations, and how these are reflected in the daily lives of people with the late effects of polio. Four studies (studies I–IV) are included in this research: three follow a qualitative approach exploring the experiences, strategies, and conditions for daily occupations among immigrants with the late effects of polio, and one follows a quantitative approach to explore the possible factors associated with fatigue among persons with the late effects of polio in Sweden.Methods: The Grounded Theory (GT) method was used to explore experiences, strategies, and participation in daily occupations and how participation is reflected and can be understood in daily life. Twelve immigrants from Eastern Africa with the late effects of polio were interviewed and the interviews were analyzed according to GT (studies I–III). For study III, a secondary analysis of the interviews was conducted to probe deeper into the complexity of participation. In study IV, an explorative and cross-sectional method was used to explore possible factors associated with fatigue.Results: Study I showed that experiences in daily occupations were highly varied. Thoughts, feelings, and reasoning about capacities and opportunities to live and do things like everybody else resulted in the identification of participants’ conceptions of occupational self, which in turn affected their view of the future. Experiences were dependent upon participation in daily occupations where the social environment had a salient role. The findings in study II showed how participants used 14 different strategies to find a balance between physical capacity, meaningful occupations, and the conception of their own and others’ norms and values and living conditions in Swedish society. This resulted in a struggle for occupational participation and normality. Occupations within different areas of life and social interaction appeared to be important. Based on the analysis in study III, participation proved to be an ongoing, dynamic, and interactive process influenced by five subprocesses that contributed to value and identity development. Different conditions in daily life shaped the participation process. The process could have different strengths and could lead to both a sense of participation and exclusion. Study IV showed that factors associated with fatigue such as age and the use of mobility assistive devices could partly explain fatigue among persons living with the late effects of polio in Sweden. Use of mobility assistive devices proved to be the factor most likely to explain fatigue among participants. Participants using mobility assistive devices reported less fatigue than non-users.Conclusions: This thesis contributes to the understanding of conditions for daily occupations among immigrants with the late effects of polio. These conditions make participation an inconstant and changeable process. Attention must be paid to those conditions that create possibilities to perform daily occupations and opportunities for occupations, conditions that lead to engagement in occupations, and how the conception of occupations emerges in interactions with others and the environment. To provide interventions that support the management of physical capacity and increase knowledge about the late effects of polio and its consequences in daily life is essential. To prevent fatigue and enhance participation in daily occupations, it is important to provide and demonstrate the importance of assistive devices to ensure the management of fatigue. Understanding participation as an interactional process helps to clarify the social political aspects of participation, which advocates for the consideration of conditions that influence the participation process both politically and socially. The results call for a critical approach when addressing and enhancing participation. Additionally, the findings in this thesis reinforce the importance of occupations for those at risk of social exclusion.
机译：目的：本论文的总体目的是探讨日常生活的条件，以及这些状况如何在脊髓灰质炎的晚期影响人群的日常生活中得到反映。这项研究包括四项研究（研究I–IV）：三项研究采用定性方法，探讨了小儿麻痹症的后期影响，对移民日常工作的经验，策略和条件，另一项研究采用定量方法，探讨了可能的因素。方法：扎根理论（GT）方法用于探索经验，策略和参与日常工作的方式，以及如何在日常生活中反映和理解参与方式。对来自东部非洲的十二名脊髓灰质炎的晚期影响的移民进行了采访，并根据GT对访谈进行了分析（研究I–III）。对于研究III，对访问进行了二次分析，以更深入地探讨参与的复杂性。在研究IV中，采用了一种探索性和横断面方法来探讨与疲劳相关的可能因素。结果：研究I显示，日常工作的经历差异很大。关于生活和做其他事情的能力和机会的想法，感受和推理导致参与者对职业自我概念的认同，进而影响了他们对未来的看法。经验取决于参加日常工作，而在这些工作中，社会环境起着重要作用。研究II中的结果表明，参与者如何使用14种不同的策略在身体能力，有意义的职业以及他们自己和他人在瑞典社会中的准则，价值观和生活条件的观念之间找到平衡。这导致了职业参与和正常化的斗争。在生活的不同领域和社会交往中的职业似乎很重要。根据研究三的分析，参与被证明是一个持续的，动态的，互动的过程，受到五个子过程的影响，这些子过程为价值和身份发展做出了贡献。日常生活中的不同条件决定了参与过程。该过程可能具有不同的优势，并可能导致参与感和排斥感。研究IV显示，与年龄有关的疲劳因素以及年龄和使用行动辅助装置的使用，可以部分解释瑞典小儿麻痹症晚期影响者的疲劳。行动辅助设备的使用被证明是最有可能解释参与者疲劳的因素。使用移动辅助设备的参与者报告的疲劳程度要比非使用辅助设备的少。结论：本论文有助于了解小儿麻痹症的后期影响，从而了解移民的日常工作条件。这些条件使参与成为一个不断变化的过程。必须注意那些创造条件以进行日常工作和从事工作的机会，导致从事职业的条件，以及在与他人和环境互动中如何出现职业概念。提供干预措施以支持体育能力的管理并增加对小儿麻痹症的后期影响及其对日常生活的影响的知识。为了防止疲劳并增强日常工作的参与度，重要的是提供并证明辅助设备对确保疲劳管理的重要性。将参与理解为一个互动过程有助于阐明参与的社会政治方面，这提倡考虑在政治和社会上都影响参与过程的条件。结果要求在解决和加强参与时采取关键方法。此外，本文的研究结果进一步强调了职业对于面临社会排斥风险的人们的重要性。

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