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Memory making in neonatal and paediatric bereavement care: developing a survey-study to understand parental experiences

Oral Presentation

October 13th 2022 at 3:45pm

Institution: The Royal Children's Hospital - Victoria, Australia

Grief experienced by parents following the death of their child is devastating and complex, placing them at a higher risk of adverse health outcomes. Memory-making practices (such as photographs and jewellery made from a child’s hand/foot/finger-print) are thought to provide families tools to meaningfully adjust and make sense of the death of their child. However, there is limited research into such practices. Although the offer of memory-making activities is established in end-of-life care, it remains uncertain how memory-making interventions impact families during bereavement.
This study aims to provide evidence-based insights into the memory-making experiences of parents during neonatal and paediatric bereavement care.
Following a systematic search for published reviews and original articles in health-related databases (Medline-OVID, Embase-OVID and PubMed), we reviewed articles in English that encompassed themes related to neonatal and paediatric bereavement care, focusing on parental perceptions of memory making practices during and after their child’s death. Using these themes identified, we created a descriptive mixed-methodology, survey-based study to explore the memory making experiences of parents. The survey was pilot-tested by a group of bereaved parents known to our Paediatric Palliative Care team and refined based on this feedback. The study aims to capture the experiences of bereaved parents whose children died between 1 January 2018 and 31 December 2020 and were known to the Neonatal Intensive Care Unit and/or the Paediatric Palliative Care team.
We will discuss the themes identified in our literature review and how they were incorporated into the design of the survey. We will also share our lessons learnt from engaging bereaved parents in pilot-testing, and hope to present some preliminary findings from this study. Ultimately, through this survey study, we hope to address the gap in knowledge about the impact of memory-making activities, and identify how to improve current bereavement practices.


  • Dr Sid Vemuri

    General Paediatrician and Palliative Medicine Physician - Victorian Paediatric Palliative Care Program

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  • Dr Taryn Luitingh

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