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作为人生地位转变的患者教育——一项探索参与丹麦团体式患者教育项目情况的人种志研究

Patient education as a status passage in life - An ethnographic study exploring participation in a Danish group based patient education programme.

作者信息

Kristiansen Tine Mechlenborg, Antoft Rasmus

机构信息

Department of Health Science and Technology, Aalborg University, 9220 Aalborg, Denmark.

Faculty of Social Sciences, Aalborg University, 9220 Aalborg, Denmark.

出版信息

Soc Sci Med. 2016 Jun;158:34-42. doi: 10.1016/j.socscimed.2016.04.012. Epub 2016 Apr 14.

Abstract

In this paper, we apply the theory of status passage to the empirical field of group-based patient education. On the basis of ethnographic fieldwork carried out in the context of a local Danish patient education programme aimed at people diagnosed with rheumatoid arthritis, we illustrate how participation in the programme for the recently diagnosed is a regularised status passage symbolising a transition in life from a novice to a more experienced person with chronic illness. We demonstrate how central properties of status passage are at play and how they are shaped by interactions among the different agents: participants, lay experts and health professionals. We highlight how the unique biographical situation of the individual and the individual timing of participation is an important factor affecting whether the patient education programme succeeds in regularising the status passage. We highlight the ambiguity of the role of the health professionals in directing the status passage of the recently diagnosed. On one hand, health professionals empowered the participants by giving them access to professional knowledge and guidance and thereby supporting the status passage. On the other hand, the effort to direct responsibility back to the participants did not consider individual biographical situations, and thereby risked leaving the participants frustrated and unable to pass. Further, we point to the special significance of the socialising process between the participants, with the recently diagnosed being the novices asking questions and seeking guidance and the lay experts and the experienced participants taking the role of coaches, guiding the recently diagnosed managing the status passage into chronic illness.

摘要

在本文中,我们将地位过渡理论应用于基于群体的患者教育实证领域。基于在丹麦当地一项针对类风湿关节炎患者的患者教育项目背景下开展的民族志田野调查,我们阐述了新确诊患者参与该项目如何成为一种规范化的地位过渡,象征着从新手到慢性病经验更丰富者的人生转变。我们展示了地位过渡的核心特性如何发挥作用,以及它们如何由不同主体(参与者、外行专家和健康专业人员)之间的互动塑造。我们强调个体独特的生平状况以及参与的个体时机是影响患者教育项目能否成功使地位过渡规范化的一个重要因素。我们强调健康专业人员在引导新确诊患者地位过渡方面作用的模糊性。一方面,健康专业人员通过让参与者获得专业知识和指导来赋予他们权力,从而支持地位过渡。另一方面,将责任推回给参与者的做法没有考虑个体生平状况,从而有可能让参与者感到沮丧且无法实现过渡。此外,我们指出参与者之间社交过程的特殊意义,新确诊患者作为新手提问并寻求指导,外行专家和有经验的参与者则扮演教练的角色,指导新确诊患者应对向慢性病患者身份的过渡。

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