Parents and clinicians: partners in perinatal bereavement research –experiences from the International Stillbirth Alliance Conference 2017

摘要

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.