Memory making during bereavement care following the death of a child: A survey exploring parental experiences

Background: Grief experienced by parents following the death of their child is profound and places them at a higher risk of adverse health outcomes. Memory making practices intend to provide families the tools to meaningfully adjust and make sense of a child’s death. Although memory making practices are established in end-of-life care, it remains uncertain how memory making interventions are experienced by families during bereavement. Aim: This study aims to provide evidence-based insights into the memory making experiences of parents during neonatal and paediatric bereavement care. Design: This is an exploratory descriptive mixed-methodology study using a Melbourne-based cross-sectional electronic-survey. Setting/Participants: Thirty-three bereaved parents participated in this study. All families were known to the Neonatal Intensive Care Unit and/or the Victorian Paediatric Palliative Care Program at The Royal Children’s Hospital. This study captures the experiences of bereaved parents whose children died between 1 January 2018 and 31 December 2020. Results: The majority of parents who took part in memory making activities had a positive experience. Parent responses came together across four themes: (1) Experiential memory making is emotionally challenging but rewarding, (2) Physical memory making keeps the child real and part of the family, (3) Regret over missed opportunities and (4) Catering to individual needs. Conclusion: Personalised provisions of love and care were dignities parents could warmly reflect back on during their bereavement. Importantly, tailoring memory making practices to the unique needs of the family and the dying child ensures both have their needs acknowledged and met.