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脊髓灰质炎幸存者对生活质量意义的认知以及用于促进参与日常活动的策略。

Polio survivors' perceptions of the meaning of quality of life and strategies used to promote participation in everyday activities.

作者信息

Atwal Anita, Spiliotopoulou Georgia, Coleman Caron, Harding Kate, Quirke Caroline, Smith Nicole, Osseiran Zeina, Plastow Nicola, Wilson Lesley

机构信息

Division of Occupational Therapy, School of Health Sciences and Social Care, Brunel University, Uxbridge, UK.

出版信息

Health Expect. 2015 Oct;18(5):715-26. doi: 10.1111/hex.12152. Epub 2014 Jan 20.

Abstract

INTRODUCTION

The term 'post-polio syndrome' (PPS) is used to describe new and late manifestations of poliomyelitis that occur later in life. Research in this area has focused upon health status rather than its effect on quality of life.

AIM

To gain an in-depth understanding of the meaning of quality of life for polio survivors and to determine the type of strategies that are used by people with PPS and the support that they consider as important to facilitate participation in everyday life activities that have an impact on their quality of life.

METHOD

Six focus groups were conducted with 51 participants from two regions in England. Data were audio-taped and analysed using thematic analysis.

RESULTS

Our research found that polio survivors used terms used to describe quality of life which could be associated with that of happiness. Our research has identified resolvable factors that influence quality of life namely inaccessible environments, attitudes of health-care professionals and societal attitudes. Polio survivors have tried alternative therapies, chiefly acupuncture and massage, and found them to be effective in enhancing their quality of life.

CONCLUSION

It is suggested that health-care professionals should consider factors which influence happiness and implement a person-centred approach with the views of the polio survivor being listened to. The three factors that influenced quality of life could be resolved by health-care professionals and by society. With regard to strategies used, we suggest that polio survivors should have access to the treatments that they perceive as important, although further research is required to design optimal interventions for this client group.

摘要

引言

“小儿麻痹后遗症”(PPS)一词用于描述小儿麻痹症在生命后期出现的新的和晚期表现。该领域的研究主要集中在健康状况而非其对生活质量的影响。

目的

深入了解小儿麻痹症幸存者生活质量的意义,确定小儿麻痹后遗症患者所采用的策略类型以及他们认为对促进参与影响其生活质量的日常活动至关重要的支持。

方法

对来自英格兰两个地区的51名参与者进行了6次焦点小组访谈。数据进行了录音,并采用主题分析法进行分析。

结果

我们的研究发现,小儿麻痹症幸存者使用的描述生活质量的术语可能与幸福相关。我们的研究确定了影响生活质量的可解决因素,即无障碍环境、医疗保健专业人员的态度和社会态度。小儿麻痹症幸存者尝试了替代疗法,主要是针灸和按摩,并发现它们对提高生活质量有效。

结论

建议医疗保健专业人员应考虑影响幸福的因素,并采用以人为本的方法,倾听小儿麻痹症幸存者的意见。影响生活质量的三个因素可由医疗保健专业人员和社会解决。关于所采用的策略,我们建议小儿麻痹症幸存者应能获得他们认为重要的治疗,不过需要进一步研究为该客户群体设计最佳干预措施。

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