Abstract
BackgroundThe 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.MethodsThis 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.ResultsThe 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.ConclusionAll 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.Electronic supplementary materialThe online version of this article (doi:10.1186/1471-2431-14-269) contains supplementary material, which is available to authorized users.
Highlights
The death of a child is a devastating event for parents
22 studies were from North America, 12 from the UK, 14 from other European countries and 4 from Australia. 19/25 quantitative studies were questionnaire surveys, 5 were interview surveys and one was a case series. 17/20 qualitative studies involved in-depth interviews with bereaved parents, 3 studies analysed data from open-ended questions in surveys. 4/7 mixed data studies were questionnaire studies, 2 were interview studies and 1 was a combination
13 studies included child deaths from any cause, 16 studies were of perinatal deaths, 10 studies of Sudden infant death syndrome (SIDS), 7 studies were of deaths on paediatric intensive care units, 3 studies of deaths from trauma, 2 studies of deaths of children with intellectual disability and 1 of suicides
Summary
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. It is an upset to the natural order of events; most parents rightly expect their children to outlive them Several years after their child has died, bereaved parents may continue to feel the impact of the death on a daily basis [1]. In many countries CDR involves detailed investigation of individual child deaths, requiring full medical and social histories from parents, death scene analysis and autopsy [3,4] This detailed CDR process has a clear focus on determining the cause of death but does not necessarily address the needs of the family; this is pertinent as detailed CDR could be considered intrusive for the recently bereaved parents
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