What do bereaved parents want from professionals after the sudden death of their child: a systematic review of the literature

J Garstang, F Griffiths, P Sidebotham

Research output: Contribution to journalArticlepeer-review

36 Citations (Scopus)
113 Downloads (Pure)

Abstract

Background
The death of a child is a devastating event for parents. In many high income countries, following an unexpected death, there are formal investigations to find the cause of death as part of wider integrated child death review processes. These processes have a clear aim of establishing the cause of death but it is less clear how bereaved families are supported. In order to inform better practice, a literature review was undertaken to identify what is known about what bereaved parents want from professionals following an unexpected child death.

Methods
This was a mixed studies systematic review with a thematic analysis to synthesize findings. The review included papers from Europe, North America or Australasia; papers had to detail parents’ experiences rather than professional practices.

Results
The review includes data from 52 papers, concerning 4000 bereaved parents. After a child has died, parents wish to be able to say goodbye to them at the hospital or Emergency Department, they would like time and privacy to see and hold their child; parents may bitterly regret not being able to do so. Parents need to know the full details about their child’s death and may feel that they are being deliberately evaded when not given this information. Parents often struggle to obtain and understand the autopsy results even in the cases where they consented for the procedure. Parents would like follow-up appointments from health care professionals after the death; this is to enable them to obtain further information as they may have been too distraught at the time of the death to ask appropriate questions or comprehend the answers. Parents also value the emotional support provided by continuing contact with health-care professionals.

Conclusion
All professionals involved with child deaths should ensure that procedures are in place to support parents; to allow them to say goodbye to their child, to be able to understand why their child died and to offer the parents follow-up appointments with appropriate health-care professionals.
Original languageEnglish
Article number269
Number of pages17
JournalBMC Pediatrics
Volume14
DOIs
Publication statusPublished - 15 Oct 2014

Keywords

  • Child death
  • Bereavement
  • Parent
  • Sudden infant death syndrome
  • Child death review
  • Multi-professional working
  • Physician interactions

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