Centre for Reproductive Research & Communication, British Pregnancy Advisory Service, London, UK
Department of Public Health, Environments and Society, London School of Hygiene and Tropical Medicine, London, UK.
BMJ Sex Reprod Health. 2024 Apr 11;50(2):142-145. doi: 10.1136/bmjsrh-2023-202018.
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.
患者和公众参与(PPI)在与堕胎相关的研究中受到限制。造成这种情况的可能原因包括担心与一个被污名化的患者群体接触,这些患者重视保密性,可能不愿意重新与服务机构接触。结构障碍,包括与堕胎相关的研究资金有限,也阻止了研究人员创造有意义的 PPI 机会。在这里,我们描述了在 Shaping Abortion for Change(SACHA)研究中进行 PPI 的经验教训,该研究旨在为英国堕胎护理的新方向创建一个证据基础。采用了两种 PPI 方法:让患者和公众作为非专业顾问参与研究的监督及其传播;以及小组会议,以了解患者对研究结果和建议的解释的看法。所有参与者都观察到 SACHA 的研究结果与他们在英国堕胎的亲身经历相符。这些优先事项与作为 SACHA 研究的一部分进行的单独的专家利益相关者咨询中确定的优先事项非常吻合。PPI 参与者发现了一个在研究过程中没有确定的额外优先事项。我们发现堕胎患者非常有动力参与小组会议,他们的参与积极促进了堕胎去污名化,为他们提供了一个分享经验的空间。这可能会减轻对堕胎进行研究和 PPI 的任何伦理问题的担忧,包括重新审视堕胎经历会引起痛苦的假设。我们希望我们的反思对其他考虑在与堕胎相关的研究和服务改进中进行 PPI 的人有用。