In recent years, there has been a global call to reduce the numbers of preventable stillbirths and increase public awareness about the incidence and impact of pregnancy loss. The lived experiences of bereaved parents have much to contribute to developing the research agenda and clinical care in pregnancy loss. The multidisciplinary Pregnancy Loss Research Group (PLRG) based at the INFANT Centre at University College Cork and Cork University Maternity Hospital, has an established practice of active engagement and participation of patient members. This partnership provided the catalyst to model a similar collaborative approach between clinicians, researchers and bereaved parents when the PLRG was successful in their bid to host the International Stillbirth Alliance (ISA) annual conference in 2017. Over 400 hundred delegates from around the globe attended the conference, of which one quarter were bereaved parents. Establishing a culture of collaboration, support and mutual respect in the field of pregnancy loss, requires scientists, clinicians and parents to be brought together so each can be informed by the other in the efforts to prevent stillbirth and improve bereavement care. As part of ISA 2017 conference, a sub-committee of staff and parents was established to ensure that the voice of parents could contribute to the research agenda and developments in clinical and bereavement care. A creative workshop specifically for parents, followed by a parent assembly were organised to facilitate this. Remembrance activities, organised by the parent committee, were central to the conference and actively engaged in by parents, clinicians and researchers. This commentary, written collaboratively by a parent, a chaplain, a bereavement and loss specialist midwife and a consultant obstetrician, gives voice to this experience, identifying four key messages that arose from our reflection on the conference. These include; the value of active partnership between clinicians and patients, the use of creativity as a unifying expression of grief and as a means to facilitate learning, the value of collaboration with global stakeholders in raising awareness about stillbirth, and the importance of facilitating meaningful patient/public engagement in scientific research. The potential for education and learning opportunities are also explored, highlighting the connection between parents, researchers and clinicians as central stakeholders in the prevention of stillbirth and in improving bereavement care.

中文翻译：

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家长和临床医生：围产期丧亲研究的合作伙伴——2017 年国际死产联盟会议的经验

近年来，全球呼吁减少可预防的死产数量，并提高公众对流产发生率和影响的认识。失去亲人的父母的生活经历对于制定流产的研究议程和临床护理有很大帮助。多学科流产研究小组 (PLRG) 位于科克大学婴儿中心和科克大学妇产医院，拥有患者成员积极参与的既定做法。当 PLRG 成功申办 2017 年国际死产联盟 (ISA) 年会时，这种伙伴关系为临床医生、研究人员和失去亲人的父母之间建立类似的合作方法提供了催化剂。来自全球各地的 40000 多名代表参加了会议会议，其中四分之一是失去亲人的父母。在流产领域建立一种合作、支持和相互尊重的文化，需要科学家、临床医生和家长齐心协力，以便彼此了解如何努力预防死产和改善丧亲护理。作为 ISA 2017 会议的一部分，成立了一个由工作人员和家长组成的小组委员会，以确保家长的声音能够为临床和丧亲护理的研究议程和发展做出贡献。为此，专门为家长举办了创意研讨会，随后举行了家长大会。由家长委员会组织的纪念活动是会议的核心，家长、临床医生和研究人员积极参与。这篇评论由一位家长、一位牧师、一位丧亲和损失专家助产士和一位产科顾问共同撰写，表达了这一经历，并指出了我们在会议反思中得出的四个关键信息。这些包括; 临床医生和患者之间积极合作的价值，利用创造力作为悲伤的统一表达和促进学习的手段，与全球利益相关者合作在提高对死产的认识方面的价值，以及促进有意义的患者/公众的重要性从事科学研究。还探讨了教育和学习机会的潜力，强调了父母、研究人员和临床医生作为预防死产和改善丧亲护理的核心利益相关者之间的联系。