None listed
Conditions
Brief summary
This study will ask families who have experienced the unexpected death of a child in PICU about their experience of and their thoughts about bereavement care. The aim of PICU care is to help children to survive serious illnesses and injuries, but unfortunately not all children survive. For those who die unexpectedly, the experience for their family can be very traumatic. These families may struggle to understand what happened in the last moments of their child’s life, and why the efforts of doctors and nurses to save them were not successful. This may make it harder for these families to process their grief in a healthy way and may contribute to conditions such as post-traumatic stress, complicated grief, and problems in the way the family functions. The best way to support families after the unexpected death of a child is currently not well understood, with most research and resources focusing on expected deaths such as cancer. In the case of expected deaths, there is usually time to plan and partner with families, and there are specialist services such as palliative care available to provide support. The experience of families who lose a child unexpectedly can be quite different, and so a different approach is needed. This study will use focus groups and family interviews to ask close relatives of children who have died an unexpected death in PICU about the bereavement care they received, the gaps in care, their perceived bereavement care needs, and their recommendations for PICU bereavement care. The results will be used to design an experimental PICU bereavement service to be implemented as the intervention in Phase Two of the FOOTPRINTS project.
Interventions
A combination of focus groups and family interviews with close relatives of children who have died an unexpected death in PICU, to explore qualitative themes relating to their experience of bereavement care, gaps in care they encountered, their perceived bereavement care needs, and their recommendations for a PICU bereavement service.
a) Each participant will attend a single focus group or family interview, depending on preference, lasting approximately 2 hours.
b) Each focus group / family i
A combination of focus groups and family interviews with close relatives of children who have died an unexpected death in PICU, to explore qualitative themes relating to their experience of bereavement care, gaps in care they encountered, their perceived bereavement care needs, and their recommendations for a PICU bereavement service. a) Each participant will attend a single focus group or family interview, depending on preference, lasting approximately 2 hours. b) Each focus group / family interview will have no more than 12 participants, preferably six to eight. c) Sessions will be semi-structured, following a facilitation guide that has been developed by the FOOTPRINTS working party and refined with two consumers. Questions will be open-ended, and participants will be provided pen and paper as an alternative option to record answers should they feel uncomfortable answering any questions verbally. A psychological safety plan has been developed by the FOOTPRINTS working party and refined with two consumers, and this will guide the focus group / family interview conduct to protect participant and researcher psychological safety. Participants will also be provided with written resources at the entry / exit to the sessions, with contact details for grief support services and contact details for the research team should they require support after the session. d) Groups will be convened by two facilitators within the room, and a third outside the room to support any participants who experience distress. Facilitators will be members of the FOOTPRINTS working party, and will include an experienced researcher, a social worker, and a nurse with experience communicating with bereaved families.
Sponsors
Dr Simon Erickson
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
Any person over the age of 18 who considers themselves a close family member of a child who has: a) died in PICU during the five years preceding the commencement of this project and b) who has not received Palliative Care Services. Non-English-speaking families will be supported to participate using existing professional interpreter services.
Exclusion criteria
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