Rebecca Blaylock, Maria Lewandowska, Charlotte Kelly, Becky Gunn, Rebecca Meiksin, Rachel H Scott, Melissa J Palmer, Kaye Wellings, Patricia A Lohr, Rebecca S French, The Sacha Study Team N/A
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Here, we describe lessons learnt on undertaking PPI as part of the Shaping Abortion for Change (SACHA) Study, which sought to create an evidence base to guide new directions in abortion care in Britain.Two approaches to PPI were used: involving patients and the public in the oversight of the research and its dissemination as lay advisors, and group meetings to obtain patients' views on interpretation of findings and recommendations. All participants observed the SACHA findings aligned with their own experiences of having an abortion in Britain. These priorities aligned closely with those identified in a separate expert stakeholder consultation undertaken as part of the SACHA Study. One additional priority which had not been identified during the research was identified by the PPI participants.We found abortion patients to be highly motivated to engage in the group meetings, and participation in them actively contributed to the destigmatisation of abortion by giving them a space to share their experiences. This may alleviate any ethical concerns about conducting research and PPI on abortion, including the assumption that revisiting an abortion experience will cause distress. 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引用次数: 0
摘要
在堕胎相关研究中,患者和公众参与 (PPI) 有限。可能的原因包括,研究人员担心与被污名化的患者群体接触,他们重视保密性,可能不愿意重新接受服务。结构性障碍,包括人工流产相关研究的资金有限,也阻碍了研究人员创造有意义的 PPI 机会。在此,我们介绍了作为 "塑造堕胎变革(SACHA)研究 "一部分的 "公众参与"(PPI)的经验教训,该研究旨在创建一个证据基础,以指导英国堕胎护理的新方向。"公众参与 "采用了两种方法:让患者和公众作为非专业顾问参与研究的监督和传播,以及召开小组会议以了解患者对研究结果和建议的解释。所有参与者都认为 SACHA 的研究结果与他们在英国堕胎的亲身经历相吻合。这些优先事项与作为 SACHA 研究一部分的单独专家利益相关者咨询中确定的优先事项非常一致。我们发现人工流产患者参与小组会议的积极性很高,参与小组会议为他们提供了一个分享经验的空间,从而积极促进了人工流产的去污名化。这可能会减轻人们对开展流产研究和 PPI 的伦理顾虑,包括重温流产经历会造成痛苦的假设。我们希望我们的思考对其他考虑在人工流产相关研究和服务改进中开展 PPI 的人有所帮助。
Patient and public involvement in abortion research: reflections from the Shaping Abortion for Change (SACHA) Study.
Patient and public involvement (PPI) is limited within abortion-related research. Possible reasons for this include concerns about engaging with a stigmatised patient group who value confidentiality and may be reluctant to re-engage with services. Structural barriers, including limited funding for abortion-related research, also prevent researchers from creating meaningful PPI opportunities. Here, we describe lessons learnt on undertaking PPI as part of the Shaping Abortion for Change (SACHA) Study, which sought to create an evidence base to guide new directions in abortion care in Britain.Two approaches to PPI were used: involving patients and the public in the oversight of the research and its dissemination as lay advisors, and group meetings to obtain patients' views on interpretation of findings and recommendations. All participants observed the SACHA findings aligned with their own experiences of having an abortion in Britain. These priorities aligned closely with those identified in a separate expert stakeholder consultation undertaken as part of the SACHA Study. One additional priority which had not been identified during the research was identified by the PPI participants.We found abortion patients to be highly motivated to engage in the group meetings, and participation in them actively contributed to the destigmatisation of abortion by giving them a space to share their experiences. This may alleviate any ethical concerns about conducting research and PPI on abortion, including the assumption that revisiting an abortion experience will cause distress. We hope that our reflections are useful to others considering PPI in abortion-related research and service improvement.
期刊介绍:
BMJ Sexual & Reproductive Health is a multiprofessional journal that promotes sexual and reproductive health and wellbeing, and best contraceptive practice, worldwide. It publishes research, debate and comment to inform policy and practice, and recognises the importance of professional-patient partnership.