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

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.

An evidence-based guide to the investigation of sudden unexpected death in infancy

“…Knowing the cause of death is of the utmost importance for families to help them come to terms with the death [4]. It is also essential in the small proportion where a crime may have been committed, to ensure that such cases are appropriately detected and justice administered.…”

Child mortality: preventing future child deaths and optimizing family support

“…When a child dies, a comprehensive analysis of the causes and factors that contributed to death should be carried out in order to provide parents information about why their child has died and to improve vital statistics data [14,16]. In addition to this, support after the death of a child that meets the needs of the parents should be provided to help them to cope with the loss of their child and to prevent physical and psychosocial problems [14,17]. Furthermore, identified factors that contributed to death should be translated in (public) health and legislative strategies in order to prevent future child deaths [16].…”

“…A multidisciplinary team analyses the circumstances surrounding every child's death in a systematic way in order to 1. improve the quality of the procedure with regard to the determination of the cause of death as well as the death statistics; 2. identify avoidable factors that give directions for prevention; 3. translate the results into possible interventions, and 4. support the family [5,16,31]. Support to the family is an essential part of the method to enhance understanding and acceptance of the child's death, which improves bereavement [5,14].…”

“…The death of a child is an enormous tragedy not only for the parents and their family members [14,15], but also for the wider community [5]. When a child dies, a comprehensive analysis of the causes and factors that contributed to death should be carried out in order to provide parents information about why their child has died and to improve vital statistics data [14,16].…”

“…In case of a sudden and unexpected death in particular, the initial care largely determines the course of bereavement. In this context professionals should realise that parents want to say goodbye to their child, receive information about the cause of death and feel supported by professionals [14]. Parents value health professionals and others who approach them with empathy, kindness and respect.…”