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Being broken: A qualitative study exploring unexpected death in the Paediatric Intensive Care Unit and the family
Arielle Jolly1, Ashleigh E Butler2, Simon Erickson1
1School of Nursing, Curtin University, Bentley, Western Australia, Australia; Paediatric Critical Care, Child and Adolescent Health Service, Nedlands, Western Australia, Australia.
Insights
Parents experienced profound grief after their child’s unexpected death in a paediatric intensive care unit (PICU). Care focused on respectful communication and family involvement significantly aided bereavement.
Area of Science:
- Pediatric Intensive Care Unit (PICU) care
- Bereavement and Grief Studies
- Qualitative Research Methods
Background:
- Child death in a PICU is traumatic for parents.
- Grief after unexpected child death is poorly understood compared to known life-limiting conditions.
Purpose of the Study:
- To understand bereaved family members' experiences of care in a PICU following unexpected child death.
- To identify factors influencing parental grief and bereavement in the PICU setting.
Main Methods:
- Qualitative study using focus groups and interviews with 15 family members.
- Thematic analysis of semistructured discussions guided by meaning reconstruction theory.
- Exploration of experiences 6 months to 5 years post-bereavement.
Main Results:
- Participants described feeling 'broken' due to their child's death.
- Key themes included respectful communication, meaningful time, memory creation, support systems, and family inclusion.
- Both supportive and detrimental care elements impacting bereavement were identified.
Conclusions:
- Respectful communication from trusted clinicians is vital.
- Providing meaningful time and opportunities for meaning-making supports families.
- Inclusive care for the entire family improves PICU bereavement practices for unexpected deaths.
Background:
The death of a child is a catastrophic event, and to experience this loss within the complex environment of a paediatric intensive care unit (PICU) can be highly traumatic for parents. With current bereavement literature heavily focused on children with known life-limiting conditions, the unique grief experience of unexpected child death is poorly understood.
Aim:
The aim of this study was to increase understanding of bereaved family members' experience of care in a PICU after the unexpected death of their child.
Methods:
Two focus groups and two interviews were conducted with adult family members of children who had died unexpectedly in a tertiary PICU 6 months to 5 years prior. A qualitative, constructivist approach was adopted, utilising semistructured discussions following a facilitation guide underpinned by meaning reconstruction framework as the guiding grief theory. Data were analysed thematically.
Results:
There were 15 participants, including four fathers, 10 mothers, and one family friend. Participants shared vivid and emotional recollections of the death of their child, with a central concept of being broken. Five key themes captured participants' experience of care in the PICU including respectful communication, meaningful time, memories we can live with, face(s) ofsupport, and involving the whole family. Participants described well-delivered elements of care that supported their bereavement needs, as well as poorly delivered care that contributed to their feelings of being broken.
Conclusion:
Family members valued care that was respectfully communicated by a trusted clinician, provided choice over significant time periods and meaning-making opportunities at the end of life, and was inclusive of all family members. These insights offer guidance to improve PICU bereavement practices for unexpected deaths.
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