The FOOTPRINTS Project Phase Two: Follow-On Outreach - Psychosocial Support after the Unexpected Death of a Child in a Paediatric Intensive Care Unit (PICU)

Abstract

Project Summary: Aim: The aim of this study is to design and measure the effect of a PICU bereavement service to follow-up families of children who died unexpectedly. Background: Despite most inpatient paediatric deaths in developed countries occurring in a paediatric intensive care unit (PICU), there is a gap in literature and services on the topic of unexpected bereavement. Unlike patients who have life-limiting conditions and those who die expected deaths, children who present acutely to PICU and subsequently die generally do not fall under the remit of traditional palliative care services, and therefore their families often do not receive structured bereavement follow-up. Due to the rapid and traumatic nature of their child’s death these families have unique and significant grief factors equating to high risk of post-traumatic stress, complicated grief, and poor family functioning. Examining the experience of these families provides an opportunity to design bereavement care targeted to their needs and improve family-centred outcomes including family coping, functioning, well-being, and the family experience of bereavement. Methodology: A two-phase project consisting of a design phase followed by an interventional study. Phase One will consist of: 1) an integrative review of the literature on the topic of unexpected death in PICU and practice recommendations for bereavement care, 2) focus groups and interviews with bereaved families to understand what they consider important in a PICU bereavement service, 3) a scoping survey of current bereavement practices in Australian PICUs, and 4) Informed design of a PICU bereavement service (FOOTPRINTS) in collaboration with industry stakeholders and health consumers. Phase Two will be a type 2 hybrid effectiveness-implementation design. Effect of the FOOTPRINTS Service will be measured in a mixed-methods interventional trial, utilising a sequential pre and post design to assess grief severity in bereaved family members as the primary outcome. Implementation measures will assess feasibility, fidelity, and translatability of the FOOTPRINTS Service. Significance: The findings of this project will increase knowledge about unexpected death in PICU, family bereavement care needs, components of a bereavement service and feasibility of intervention delivery. Findings will contribute to establishment of a business case for a PICU bereavement service.