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本文引用的文献

1
Mentalization for Offending Adult Males (MOAM): study protocol for a randomized controlled trial to evaluate mentalization-based treatment for antisocial personality disorder in male offenders on community probation.心理化治疗成年男性罪犯(MOAM):一项随机对照试验的研究方案,旨在评估针对社区缓刑男性罪犯反社会人格障碍的心理化治疗。
Trials. 2020 Dec 7;21(1):1001. doi: 10.1186/s13063-020-04896-w.
2
"About sixty per cent I want to do it": Health researchers' attitudes to, and experiences of, patient and public involvement (PPI)-A qualitative interview study.“约60%的人表示愿意参与”:健康领域研究人员对患者及公众参与(PPI)的态度与经历——一项定性访谈研究
Health Expect. 2019 Aug;22(4):721-730. doi: 10.1111/hex.12883. Epub 2019 Mar 29.
3
Impact of patient and public involvement on enrolment and retention in clinical trials: systematic review and meta-analysis.患者和公众参与对临床试验入组和保留的影响:系统评价和荟萃分析。
BMJ. 2018 Nov 28;363:k4738. doi: 10.1136/bmj.k4738.
4
Priorities for methodological research on patient and public involvement in clinical trials: A modified Delphi process.患者和公众参与临床试验的方法学研究重点:改良 Delphi 法。
Health Expect. 2017 Dec;20(6):1401-1410. doi: 10.1111/hex.12583. Epub 2017 Jun 15.
5
Study retention as bias reduction in a hard-to-reach population.将研究保留率作为减少难以接触人群偏倚的方法。
Proc Natl Acad Sci U S A. 2016 May 17;113(20):5477-85. doi: 10.1073/pnas.1604138113. Epub 2016 May 9.
6
Strategies to Build Trust and Recruit African American and Latino Community Residents for Health Research: A Cohort Study.建立信任并招募非裔美国人和拉丁裔社区居民参与健康研究的策略:一项队列研究。
Clin Transl Sci. 2015 Oct;8(5):412-20. doi: 10.1111/cts.12273. Epub 2015 Jun 21.
7
How do patients with severe mental diagnosis cope in everyday life - a qualitative study comparing patients' experiences of self-referral inpatient treatment with treatment as usual?患有严重精神疾病的患者在日常生活中如何应对——一项比较患者自我转诊住院治疗与常规治疗体验的定性研究?
BMC Health Serv Res. 2014 Aug 15;14:347. doi: 10.1186/1472-6963-14-347.
8
Bias in research.研究中的偏倚
Evid Based Nurs. 2014 Oct;17(4):100-1. doi: 10.1136/eb-2014-101946. Epub 2014 Aug 5.
9
A systematic review of the impact of patient and public involvement on service users, researchers and communities.患者和公众参与对服务使用者、研究人员和社区影响的系统评价。
Patient. 2014;7(4):387-95. doi: 10.1007/s40271-014-0065-0.
10
Reaching the hard-to-reach: a systematic review of strategies for improving health and medical research with socially disadvantaged groups.难以接触的人群:改善健康和医学研究与社会弱势群体相关的策略的系统评价。
BMC Med Res Methodol. 2014 Mar 25;14:42. doi: 10.1186/1471-2288-14-42.

弥合差距:一项定性研究,探讨有实际生活经验的研究人员参与对英格兰和威尔士国家缓刑服务机构的一项多地点随机对照试验的影响。

Bridging the Gap: A Qualitative Study Exploring the Impact of the Involvement of Researchers With Lived Experience on a Multisite Randomised Control Trial in the National Probation Service in England and Wales.

作者信息

Simes Elizabeth, Butler Stephen, Allison Elizabeth, Barrett Barbara, Bateman Anthony, Cameron Angus, Crawford Mike, Frater Alison, Hoare Zoe, McMurran Mary, Moran Paul, Pilling Stephen, Wason James, Yakeley Jessica, Fonagy Peter

机构信息

Research Department of Clinical, Educational and Health Psychology, University College London, London, UK.

Anna Freud National Centre for Children and Families, London, UK.

出版信息

Health Expect. 2025 Feb;28(1):e70162. doi: 10.1111/hex.70162.

DOI:10.1111/hex.70162
PMID:39902497
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11791406/
Abstract

INTRODUCTION

Methodological and ethical arguments support the involvement of individuals with lived experience in research to reduce engagement barriers and ensure those directly affected by studies contribute to knowledge generation. However, there is limited evidence on the impact of including researchers with lived experience of serving a prison or community sentence in clinical trials. This qualitative study aimed to explore the value of involving researchers with lived experience of the criminal justice system as data collectors in the Mentalization for Offending Adult Males (MOAM), a multisite RCT conducted in the National Probation Service in England and Wales.

METHODS

Semi-structured interviews were conducted with 30 trial participants and 17 key stakeholders, either in person or via telephone. The interviews were transcribed verbatim and analysed thematically.

FINDINGS

Five themes emerged for trial participants and 11 for key stakeholders. For some, lived experience researchers helped overcome engagement barriers by fostering common ground with participants who were serving a prison or community sentence during recruitment. Participants reported that the involvement of lived experience researchers enhanced the study by facilitating knowledge transfer in certain instances. However, their inclusion did not eliminate all barriers and, for some participants, introduced new challenges to engagement.

CONCLUSION

Forensic lived experience researchers bridged the gap by fostering trust between data collectors and participants. Future studies should ensure that lived experience researchers receive adequate clinical supervision to support their role. The adopted methodology challenged assumptions about knowledge generation and stereotypes associated with being an ex-offender, benefiting both lived experience and traditional researchers.

PATIENT OR PUBLIC CONTRIBUTION

The study was developed in collaboration with User Voice (charity number: 1136047), who contributed to the study's design and conduct. The service user organisation co-designed the interview schedule and directed the protocol for participant payments, emphasising a consistent approach to avoid tokenism and ensure equal recognition of all contributions. The dissemination plan was developed in partnership with individuals with lived experience of the criminal justice system.

摘要

引言

方法论和伦理方面的论据支持有实际生活经验的个人参与研究,以减少参与障碍,并确保受研究直接影响的人能够为知识生成做出贡献。然而,关于在临床试验中纳入有在监狱服刑或社区服刑实际生活经验的研究人员的影响的证据有限。这项定性研究旨在探讨让有刑事司法系统实际生活经验的研究人员作为数据收集者参与“成年男性犯罪心理化”(MOAM)研究的价值,该研究是在英格兰和威尔士国家缓刑服务机构进行的一项多地点随机对照试验。

方法

对30名试验参与者和17名关键利益相关者进行了半结构化访谈,访谈方式为面对面或通过电话进行。访谈内容逐字记录,并进行了主题分析。

结果

试验参与者出现了5个主题,关键利益相关者出现了11个主题。对一些人来说,有实际生活经验的研究人员通过在招募过程中与正在监狱服刑或社区服刑的参与者建立共同基础,帮助克服了参与障碍。参与者报告说,有实际生活经验的研究人员的参与在某些情况下促进了知识转移,从而提升了研究。然而,他们的参与并没有消除所有障碍,对一些参与者来说,还带来了新的参与挑战。

结论

有法医实际生活经验的研究人员通过在数据收集者和参与者之间建立信任弥合了差距。未来的研究应确保有实际生活经验的研究人员得到充分的临床监督,以支持他们的角色。所采用的方法挑战了关于知识生成的假设以及与前科人员相关的刻板印象,使有实际生活经验的研究人员和传统研究人员都受益。

患者或公众贡献

该研究是与用户之声(慈善编号:1136047)合作开展的,该组织为研究的设计和实施做出了贡献。服务用户组织共同设计了访谈时间表,并指导了参与者报酬协议,强调采用一致的方法以避免形式主义,并确保对所有贡献给予平等认可。传播计划是与有刑事司法系统实际生活经验的个人合作制定的。