None listed
Conditions
Brief summary
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.
Interventions
The intervention will be a PICU bereavement service - the FOOTPRINTS Service - designed in Phase One of the FOOTPRINTS Project. The FOOTPRINTS Service will systematically follow-up and support families of children who have died in PICU from sudden and unexpected causes who are not already linked to specialist palliative care service. The service will be offered by a PICU liaison nurse and critical care social worker who will work together to provide a systematic program of follow-up, with regula
The intervention will be a PICU bereavement service - the FOOTPRINTS Service - designed in Phase One of the FOOTPRINTS Project. The FOOTPRINTS Service will systematically follow-up and support families of children who have died in PICU from sudden and unexpected causes who are not already linked to specialist palliative care service. The service will be offered by a PICU liaison nurse and critical care social worker who will work together to provide a systematic program of follow-up, with regular contact time-points, focused on transitional support, coordinating elements of bereavement support and linking families to community services. Outreach contact will be offered via telephone, text, or email depending on the preference of participating family members, at the following time-points: 1) In PICU around the time of death 2) 2 weeks post bereavement 3) 3 months post bereavement 4) 6 months post bereavement 5) 12 months post bereavement * Research measures administered at 13 months post bereavement. The duration of outreach contact will vary depending on the level of response from participating family members, but is expected to range between 15 - 45 minutes. Families will be offered links to community services relevant to their unique grief circumstances as assessed by the FOOTPRINTS liaison nurse and social worker, such as professional grief counselling services and peer support groups. In addition, all participating families will be able to view links to a wide range of community services available on the FOOTPRINTS Project website, which will go live at the commencement of the service and will be regularly updated to reflect current community bereavement offerings including community-led peer support services in addition to professional service providers. An Intervention Delivery Checklist will be maintained for each service contact time-point to capture the extent the intervention is delivered as planned, along with a Telephone / Contact Log to record the extent to which family members receive contact and interact with the intervention providers. A Resource Utilisation Checklist will also be maintained to record the uptake and utilisation of community resources advised by the intervention providers. Participants from the FOOTPRINTS Project - Phase One will be invited to be involved in Phase Two as Consumer Advisors but not as participants.
Sponsors
Child and Adolescent Health Service Western Australia
Study design
Allocation
Non-randomised trial
Intervention model
Other
Primary purpose
Prevention
Masking
Open (masking not used)
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
Inclusion Criteria –Baseline Cohort: Any person who: a) considers themselves a close family member of a child who has died unexpectedly in PICU within the preceding five years, and b) has the capacity to complete the study assessments. Inclusion Criteria – Intervention Cohort: Any person who: a) considers themselves a close family member of a child who has died unexpectedly in PICU, and b) has received contact from the FOOTPRINTS Service, or c) interacted with the FOOTPRINTS Service materials, or d) utilised community services facilitated by FOOTPRINTS personnel, and e) has the capacity to complete the study assessments.
Exclusion criteria
Exclusion Criteria – Both cohorts: Family members of children already receiving pre-existing palliative care services prior to the time of death. Discretionary Exclusion Criteria: Situations involving: a) Inflicted injuries b) Disputed Custody c) Active criminal investigations – as documented in hospital notes from the time of death.
Outcome results
None listed