Bakhbakhi Danya, Siassakos Dimitrios, Storey Claire, Heazell Alexander, Lynch Mary, Timlin Laura, Burden Christy
Centre for Academic Women's Health, University of Bristol, Women's Health, Southmead Hospital, Bristol, UK.
International Stillbirth Alliance, Bristol, UK.
BMJ Open. 2018 Jan 10;8(1):e020164. doi: 10.1136/bmjopen-2017-020164.
The perinatal mortality review meeting that takes place within the hospital following a stillbirth or neonatal death enables clinicians to learn vital lessons to improve care for women and their families for the future. Recent evidence suggests that parents are unaware that a formal review following the death of their baby takes place. Many would welcome the opportunity to feedback into the meeting itself. Parental involvement in the perinatal mortality review meeting has the potential to improve patient satisfaction, drive improvements in patient safety and promote an open culture within healthcare. Yet evidence on the feasibility of involving bereaved parents in the review process is lacking. This paper describes the protocol for the Parents' Active Role and Engangement iN the review of their Stillbirth/perinatal death study (PARENTS 2) , whereby healthcare professionals' and stakeholders' perceptions of parental involvement will be investigated, and parental involvement in the perinatal mortality review will be piloted and evaluated at two hospitals.
We will investigate perceptions of parental involvement in the perinatal mortality review process by conducting four focus groups. A three-round modified Delphi technique will be employed to gain a consensus on principles of parental involvement in the perinatal mortality review process. We will use three sequential rounds, including a national consensus meeting workshop with experts in stillbirth, neonatal death and bereavement care, and a two-stage anonymous online questionnaire. We will pilot a new perinatal mortality review process with parental involvement over a 6-month study period. The impact of the new process will be evaluated by assessing parents' experiences of their care and parents' and staff perceptions of their involvement in the process by conducting further focus groups and using a Parent Generated Index questionnaire.
This study has ethical approval from the UK Health Research Authority. We will disseminate the findings through national and international conferences and international peer-reviewed journals.
在死产或新生儿死亡后于医院内召开的围产期死亡评审会议，能让临床医生汲取重要经验教训，以改善未来对产妇及其家庭的护理。近期证据表明，父母并不知晓其婴儿死亡后会进行正式评审。许多父母会欢迎有机会参与到会议当中。父母参与围产期死亡评审会议，有可能提高患者满意度，推动患者安全的改善，并在医疗保健领域营造开放的文化氛围。然而，目前缺乏关于让丧亲父母参与评审过程可行性的证据。本文描述了“父母在死产/围产期死亡评审中的积极角色与参与度研究（PARENTS 2）”的方案，通过该方案将调查医疗专业人员和利益相关者对父母参与的看法，并在两家医院对父母参与围产期死亡评审进行试点和评估。
我们将通过开展四个焦点小组来调查对父母参与围产期死亡评审过程的看法。将采用三轮改良德尔菲技术，就父母参与围产期死亡评审过程的原则达成共识。我们将进行三轮，包括与死产、新生儿死亡及丧亲护理专家召开全国共识会议研讨会，以及两阶段匿名在线问卷调查。我们将在为期6个月的研究期间试点一个有父母参与的新围产期死亡评审过程。通过进一步开展焦点小组并使用家长生成指数问卷，评估父母的护理体验以及父母和工作人员对其参与过程的看法，以此来评估新过程的影响。
本研究已获得英国健康研究管理局的伦理批准。我们将通过国内和国际会议以及国际同行评审期刊传播研究结果。
