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PhD Defence Sandra Gijzen

Preventing future child deaths and optimizing family support

Worldwide 6.1 million live-born children under the age of five died from natural and external causes in 2014. According to the Convention on the Rights of the Child appropriate measures should be taken by State Parties to ensure the survival and development of the child to a maximum extent and to diminish infant and child mortality. As countries have tried to reduce the global under-five child mortality rate with two-thirds between 1990 and 2015, which is defined as the Millennium Development Goal 4 by the World Health Organization, only 62 of the 195 countries have achieved this degree of reduction. As a consequence world leaders have renewed their goals in which every nation is expected to make every effort to further reduce preventable child deaths. In the Netherlands child mortality has declined in the past centuries due to improvements in social circumstances, sanitation, housing, hygiene and health care, and lower birth rates. Although 1130 Dutch children aged 0 up to and including 19 years (mortality rate 29.4 per 100,000 children) died in 2014, there are still child deaths that are avoidable. Understanding the nature and patterns of child mortality and the factors that have contributed to death is essential to direct preventive strategies.

The aim of this thesis is to investigate how to prevent future child deaths and optimize family support in the Netherlands. In order to answer these questions the patterns of child mortality in the Netherlands are described in part A, ‘Epidemiology’. Then, the way Dutch professionals respond to a child’s death, including the support they provide to parents of deceased children, is explored in part B, ‘Responding to child deaths’. As Child Death Review (CDR) has the potential to identify avoidable factors that contributed to death and pays attention to the needs of bereaved parents, CDR might contribute to prevent future child deaths and to improve relatives’ coping with bereavement in the Netherlands. Therefore, the possibility of analyzing child deaths systematically in the Netherlands according to the CDR method is examined in part C, ‘Implementation of Child Death Review’.

The results of this study might support health care professionals and health policy makers in their efforts to prevent future child deaths and optimize family support in the Netherlands.

Part A. Epidemiology

Chapter 2 describes the pattern of natural causes of child deaths in the Netherlands from 1950 to 2014. Mortality data due to natural causes from all deceased Dutch children aged 0-19 for the period 1950-2014 were analyzed using the electronic database of Statistics Netherlands. Age standardization was applied using the European standard population of 2013 to control for different age distributions among populations over time. Infectious diseases and diseases of the respiratory and digestive system occurred regularly in the causes of death statistics of 1950, but are rare natural

causes of child deaths in 2014. The incidence of Sudden Infant Death Syndrome (SIDS) has increased from 1973 until 1987, after which a decrease is observed until a very low incidence in 2014. Certain conditions originating in the perinatal period, congenital malformations, chromosomal abnormalities and neoplasms are the highest incidence groups of natural child deaths in 2014.

In chapter 3 changes in the pattern of external causes of child mortality in the Netherlands are described in groups classified by age and sex in deceased Dutch children aged 0-19 from 1969 to 2011 using the electronic database of Statistics Netherlands. Mortality due to external causes has declined in the Netherlands, particularly due to decreases in road traffic accidents and other external causes of accidental injury in all age groups. The efforts of the Dutch Government, the Consumer Safety Institute, and the Institute for Road Safety Research, have contributed to a decline in unintentional injuries. Death due to intentional self-harm increased significantly, and assault and events of undetermined intent remained constant.

Part B. Responding to child deaths

Chapter 4 describes the results of a study that is conducted in order to determine to what extent the existing procedures of organizations involved in the (health) care for children located in the Eastern part of the Netherlands and on a national level cover the four CDR objectives in responding to a child’s death. Protocols, guidelines or other working agreements and interview reports that describe the responsibilities and activities in case of a child’s death of participating organizations were analyzed. It is concluded that the procedures of Dutch organizations - when combined - cover the largest part of the CDR objectives. However, the procedures focus on a particular part of child mortality only, namely perinatal deaths, Sudden and Unexpected Death in Infants (SUDI) and fatal child abuse cases. A complete overview of avoidable factors that give directions for prevention of child deaths is therefore lacking. In addition to this it is concluded that support of the family should be more systematically included in the procedures of organizations.

In chapter 5 the results of a study on parents’ experiences with support after the death of their child are described. Four asynchronous online focus groups with parents of a deceased child under the age of two and a questionnaire were used to explore what bereavement care parents in the Netherlands received after the death of their child and whether this care met their needs. Most parents reported about the emotional support they received after the death of their child, particularly from family, primary care professionals and their social network. Instrumental and informational support was mainly provided by secondary care professionals. Although there is more focus on bereavement care, still one-fifth to slightly more than half of the parents in this study lacked some sort of support or experienced support that was not in line with their needs or wishes. Parents emphasise that they would like to be approached with empathy and be acknowledged in their bereavement. Next to this, parents appreciate follow-up appointments with professionals, in which continuing support is offered to the family.

Part C. Implementation of Child Death Review

Chapter 6 describes the results of a study that examined the opinions of stakeholders about the implementation of CDR in the Netherlands. Four face-to-face focus groups were held with professionals and parents of a deceased child under the age of two years. The facilitating and impeding factors were identified using the Measurement Instrument for Determinants of Innovations (MIDI). The MIDI proved to be a useful instrument for structuring the determinants of implementation. According to the results of the focus groups the focus within a strategy for implementation of CDR in the Netherlands should be particularly on the determinants associated with the user (emphasizing the personal benefits for professionals and parents, the use of a consent form and a format to gather information, and analysing anonymized data), organization (informing managers about CDR) and social-political context (adapting CDR to the Dutch regulations and legislation and to the procedures of the Public Prosecutor).

In chapter 7 the strengths, weaknesses, opportunities and threats (SWOT) that were identified in a pilot study on the implementation of CDR are described. The SWOT- frame work proved to be a suitable tool for identifying political, environmental and legal factors not only on a local but also on a national level. The implementation study provided useful suggestions for implementation of CDR in the Netherlands, but at the same time also arguments against introduction of this method. The multidisciplinary approach and the endorsement of the CDR objectives by parents and professionals turned out to be the most important strengths and opportunities in the implementation of CDR. The insufficient time and finances, the existence of other Child Death Review processes and the lack of statutory basis are identified as important weaknesses and threats. The barriers found in this implementation study need to be taken away before large scale implementation of CDR can take place.

Prevention of future child deaths and optimizing family support in the Netherlands

In chapter 8 the main conclusions are discussed. To prevent future child deaths in the Netherlands it would be desirable to analyze the causes and circumstances surrounding death systematically in all child deaths, to aggregate these data on a regional or national level and to translate the recommendations in preventive interventions. Future child deaths can be prevented when stakeholders take responsibility for examining the death of children in a comprehensive way in order to improve the survival of children. This occurs already in SUDI cases (National Cot Death Study Group), perinatal deaths (Perined) and transport-related child deaths (Institute for Road Safety Research). Unexplained deaths in minors are reviewed in the NODOK-procedure since August 2016.

Furthermore, family support needs to be part of the procedures of organizations involved in the (health) care for children and their families and be consistent with the needs and the wishes of the parents.

Of the 992 children aged 0-19 years that died in the Netherlands in 2015, 295 die in the first week and 125 die from the second until the fourth week after birth. As those child deaths are analyzed in the perinatal audits, SUDI cases are reviewed by the National Cot Death Study Group and unexplained death in minors are included in the NODOK-procedure, these review processes should be taken into account in designing a structure for analyzing child deaths.

Although analyzing all child deaths appears to be labor-intensive and expensive, one might consider to maintain a kind of stratification in analyzing child deaths, starting with for example the categories of child deaths in which the greatest potential for prevention is to be expected or where parents benefit the most.

Further research is necessary in order to examine which child death review process is feasible to use for certain child deaths. As in the Netherlands parents are involved only in SUDI cases and unexplained death in minors during the process of information gathering, further research into the involvement of parents in the review process of other categories of child deaths is recommended