“我觉得自己是解决方案的一部分。”一项关于持续疼痛领域的生活体验倡导者,专业人士和组织之间界面的定性研究

IF 1.3 Q4 CLINICAL NEUROLOGY British Journal of Pain Pub Date : 2023-10-18 DOI:10.1177/20494637231208095
Cameron Hartley, Chris Penlington
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引用次数: 0

摘要

目的引出持续性疼痛患者作为患者倡导者与疼痛管理专业人员和服务机构合作的经历,并考虑将患者纳入服务开发和研究的当前模式的影响。批判现实主义视角下的设计反身性主题分析。方法对10名在持续性疼痛领域担任患者倡导者的参与者进行在线访谈。参与者是通过有目的的滚雪球抽样来招募的。数据被分析和组织成主题,并描述性地呈现。结果患者倡导者和他们帮助的组织之间的关系被概念化为“不平等的伙伴关系”。参与者描述了与个别卫生专业人员和研究团队的积极和肯定的经历(尊重)。这种情况经常发生在缺乏灵活的组织政策的背景下,这些政策对参与构成了障碍,包括缺乏经济补偿和期望在不灵活的最后期限前工作。因此,患者维权者的经验和声音可能会让他们感到缺乏价值(机构未满足的需求)。结论有持续性疼痛服务经验的患者在改善服务方面具有重要的作用。尽管这种贡献被认为是有价值的,但它似乎被组织障碍贬低了。有关薪酬的组织政策可能会导致那些处于较高不利地位的人缺乏代表性。因此,服务和政策制定者可能会错过可能对服务开发很重要的见解。
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‘I felt part of the solution’. A qualitative study about the interface between lived experience advocates, professionals and organisations in the field of persistent pain
Objectives To elicit perspectives of people with persistent pain about their experiences working with pain management professionals and services as patient advocates and to consider implications for current models of involving patients in service development and research. Design reflexive thematic analysis from a critical realist perspective. Methods Online interviews were conducted individually with 10 participants who had acted as patient advocates in the field of persistent pain. Participants were recruited through purposive and snowball sampling. Data were analysed and organised into themes and are presented descriptively. Results The relationship between patient advocates and the organisations they help is conceptualised as ‘an unequal partnership’. Participants described positive and affirming experiences with individual health professionals and research teams (Respect). This often occurred within a context of inflexible organisational policies that presented barriers to participation including a lack of financial compensation and expectation to work to inflexible deadlines. As a result, patient advocates could experience a lack of value attributed to their experiences and voices (unmet needs from institutions). Conclusion People with personal experience of engaging with services for persistent pain are in a strong position to contribute to service improvement. Although this contribution is recognised as valuable, it appears to be devalued by organisational barriers. Organisational policies around payment may lead to a lack of representation of those experiencing higher levels of disadvantage. As a result, services and policy makers may be missing out on insights that could be important for service development.
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来源期刊
British Journal of Pain
British Journal of Pain CLINICAL NEUROLOGY-
CiteScore
3.20
自引率
11.10%
发文量
42
期刊介绍: British Journal of Pain is a peer-reviewed quarterly British journal with an international multidisciplinary Editorial Board. The journal publishes original research and reviews on all major aspects of pain and pain management. Reviews reflect the body of evidence of the topic and are suitable for a multidisciplinary readership. Where empirical evidence is lacking, the reviews reflect the generally held opinions of experts in the field. The Journal has broadened its scope and has become a forum for publishing primary research together with brief reports related to pain and pain interventions. Submissions from all over the world have been published and are welcome. Official journal of the British Pain Society.
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