Implementation of Child Death Review in the Netherlands: results of a pilot study

Child mortality in the Netherlands has declined gradually in the past decades [3, 12]. In 2014, 1130 children in the age of 0 to 19 years died (mortality rate 29.4 per100,000 live births) [3]. In 8 out of 10 cases, the death was classified as due to a natural cause. Most children die in their first year, primarily due to conditions in the perinatal period and congenital abnormalities [3]. A better understanding of the background and the circumstances surrounding the death of a child as well as the manner and cause of death may lead to targeted preventive measures. In the Netherlands systematic analysis of child deaths only occurs in cases of Sudden Infant Death Syndrome (SIDS) by the National Cot Death Study Group [30] and in perinatal deaths by perinatal health care providers who participate in an obstetric collaboration [23]. Also, unexplained deaths in minors have been systematically examined in a Dutch pilot between October 2012 and January 2014. This so-called NODO-procedure (in Dutch Nader Onderzoek DoodsOorzaak) was regulated by law, and requested further investigation of the child’s death in order to clarify the primary cause of death [14, 15]. After its initial national pilot period, the Ministry of Health, Welfare and Sport concluded that further examination into the cause of death requested by the parents should be organized regionally in a less extensive procedure. In order to achieve this, organizations involved in child deaths are developing a multidisciplinary guideline right now that describes the procedure in case of unexplained death in minors [25].

A systematic analysis is not available for all child deaths in the Netherlands. In addition to the analysis of SIDS cases, perinatal deaths and unexplained death in minors, a standardized Child Death Review (CDR) could contribute to a further decline of avoidable child deaths in the Netherlands.

CDR is a method in which a multidisciplinary team systematically analyzes child deaths in order to identify avoidable factors that may have contributed to the death and that may give directions for prevention [5]. CDR has its origin in the United States of America (USA) where the first team started in the Los Angeles County in 1978. At first, the aim of CDR was to review suspicious child deaths in which abuse or neglect could have been a factor leading to the death. Gradually, CDR teams evolved in other states of America and some of them expanded their scope to reviewing all child deaths [8–10, 27]. Nowadays nearly half of the US states review child deaths from all causes [6]. In the late 1990’s, CDR was introduced in Canada and Australia [7] followed by New Zealand and the United Kingdom (UK) [1, 2, 10]. The implementation of CDR differs between these countries; not solely in the collection of data but also in legal foundation, focus, funding, family involvement and the location of the actual review [10, 33].

However different their implementation may be, studies have shown that CDR has the potential to identify avoidable factors in child deaths. For example, Child Fatality Review Teams in Arizona and Philadelphia (USA) concluded that 38 % and 37 % respectively of all deaths of children older than one month up to the age of 18 (and 21 respectively) years were considered preventable [21, 24]. In the UK it was concluded that 29 % of child deaths might be preventable [29]. In 20 % of the completed reviews in England in 2010 to 2011 modifiable factors in child deaths were identified [10]. These modifiable factors could be translated into effective intervention processes that might lead to a reduction in certain child deaths, like the safe sleep campaigns has resulted in a decrease in SIDS cases [4, 19, 22, 31] and the government traffic safety interventions that have reduced transport-related accidental deaths in children [12, 22].

To implement CDR in the Netherlands, support of organizations involved in child and family (health) care is required. Therefore, a bottom-up approach should be used to mobilize these organizations. This will ensure that CDR is effectively implemented, because in this way professionals involved are more motivated to adopt the method in their own practice [16].

In 2010, the authors of this paper conducted a feasibility study to examine which important parameters are needed to successfully implement the CDR. Three focus group sessions were held with professionals who are involved in a child’s death and one focus group with parents of a deceased child [13]. Based on the results of these focus groups we developed a strategy for implementation of CDR including a protocol that described the CDR procedure. Afterwards, a pilot implementation was started in the Eastern part of the Netherlands in January 2011 to determine to what extent the chosen implementation strategy was effective. This paper answers the following research question: which strengths, weaknesses, opportunities and threats in the pilot implementation of CDR can be identified and which recommendations can be made for future development of the CDR method in the Netherlands?