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

In this commentary, we highlight the value of: partnership between bereaved patients and clinicians, creativity as a unifying expression of grief and to facilitate learning, collaboration with global stakeholders, and meaningful patient/public engagement in research.

Authors
Rachel Rice Daniel Nuzum, Orla O'Connell, Keelin O'Donoghue
Year
2019
Journal Name
Research Involvement and Engagement
Category
Journal Article
Keywords
PPI, Pregnancy loss, Stillbirth
Full Citation
Rice R, Nuzum D, O’Connell O, O'Donoghue K. Parents and clinicians: partners in perinatal bereavement research – experiences from the International Stillbirth Alliance Conference 2017. Research Involvement and Engagement. 2019:5:4. https://doi.org/10.1186/s40900-018-0137-8.
Link to Publication
https://doi.org/10.1186/s40900-018-0137-8

Abstract

In 2017, the Pregnancy Loss Research Group hosted the International Stillbirth Alliance Conference in Ireland. Over 400 delegates attended, of which one quarter were bereaved parents. Parents who had experienced stillbirth and pregnancy loss were involved at every level of the organisation and delivery of this international scientific conference. A workshop and assembly specifically for parents attending the conference were organised to ensure that their insights were valued and would contribute to future research. Remembrance activities drew on the skills and creativity of parents and healthcare professionals together. This commentary written collaboratively by a parent, a chaplain, a bereavement and loss specialist midwife and a consultant obstetrician, highlights the importance of patients as active participants in scientific research and the key role they play in responding to the global efforts to prevent stillbirth and improve bereavement care. It suggests four key messages that arose from reflection on the conference. These include: the value of active partnership between patients and clinicians, 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.

Pregnancy Loss Research Group

Pregnancy Loss Research Group, Department of Obstetrics & Gynaecology, University College Cork, Fifth Floor, Cork University Maternity Hospital, Wilton, Cork, T12 YE02, Ireland,

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