ORIGINAL ARTICLE
Procedures in child deaths in The Netherlands: a comparison
with child death review
Sandra Gijzen1&Jessica Petter1&Monique P. L’Hoir2,3
&Magda M. Boere-Boonekamp1&
Ariana Need4
Received: 20 October 2016 / Accepted: 29 March 2017 / Published online: 26 May 2017 # The Author(s) 2017. This article is an open access publication
Abstract
Aim Child Death Review (CDR) is a method in which every child death is systematically and multidisciplinary examined to (1) improve death statistics, (2) identify factors that give direction for prevention, (3) translate the results into possible interventions, and (4) support families. The aim of this study was to determine to what extent procedures of organizations involved in the (health) care for children in The Netherlands cover these four objectives of CDR.
Subject and methods Organizations in the Eastern part of The Netherlands and Dutch umbrella organizations involved in child (health) care were asked to provide their protocols,
guidelines or other working agreements that describe their
activities and responsibilities in case of a child’s death.
Eighteen documents and nine interview reports were made available. For the analyses we used scorecards for each CDR objective.
Results The procedures of Perined, the National Cot Death Study Group, Dutch Cot Death Foundation and Child Protection Service cover the largest part of the objectives of CDR. Organizations pay most attention to the translation of results into possible interventions. Family support gets the least attention in protocols, guidelines and other working agreements.
Conclusion Dutch organizations separately cover parts of CDR. When the procedures of organizations are combined, all CDR objectives are covered in the response to only specific groups of child deaths, i.e., perinatal deaths, Sudden Unexpected Deaths in Infants and fatal child abuse cases. Further research into the conditions that are needed for an optimal implementation of CDR in The Netherlands is neces-sary. This research should also evaluate the recently imple-mented NODOK procedure (Further Examination of the Causes of death in Children), directed to investigate unex-plained deaths in minors 0–18 years old.
Keywords Child mortality . Child death review . Prevention . Implementation
Introduction
In The Netherlands, 992 children aged 0–19 (mortality rate 25.9/100,000) died in 2015, of which 84% were due to a
natural cause (CBS2015). Most children (56%) died under
the age of 1 year mainly because of conditions originating in the perinatal period and congenital malformations, * Sandra Gijzen sgijzen@home.nl Jessica Petter jp.jessicapetter@gmail.com Monique P. L’Hoir M.LHoir@ggdnog.nl Magda M. Boere-Boonekamp m.m.boere-boonekamp@utwente.nl Ariana Need a.need@utwente.nl
1 Department HTSR, IGS Institute for Innovation and Governance
Studies, University of Twente, P.O. Box 217, 7500 AE Enschede, The Netherlands
2
Division Nutrition and Health, Wageningen University, 6708 WE Wageningen, The Netherlands
3
TNO Child Health, P.O. Box 2215, 2301 CE Leiden, The Netherlands
4 Department Public Administration, IGS Institute for Innovation and
Governance Studies, University of Twente, P.O. Box 217, 7500 AE Enschede, The Netherlands
deformations and chromosomal abnormalities (CBS 2015). Almost half of the children aged 0–19 die in the hospital
(CBS2004). Although child mortality in The Netherlands
has declined in the past decades (CBS2015; Gijzen et al.
2013), each deceased child is one too many. Therefore, it is
of great importance to learn from these deaths and to imple-ment interventions preventing future deaths (Sidebotham and
Pearson2009).
In the USA, Canada, Australia, New Zealand and UK, the death of every child is examined in a systematic way by a multidisciplinary team. This method is called Child Death
Review (CDR) (Durfee and Durfee, 2002; Durfee and
Gellert, 1992; Sidebotham et al.2008). A team of
profes-sionals collaborates according to a specific protocol. The kind of professionals who participate in the team differs among the
countries where CDR is implemented (Fraser et al.2014). The
CDR objectives are 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 (Covington et al.
2005; Cristian and Sege 2010; Ornstein et al. 2013;
Sidebotham and Pearson2009). Each country using the
CDR has a different review process (Vincent 2014).
However, all countries share the four objectives of CDR, which is considered to be the gold standard in the manage-ment of child deaths by the American Academy of Pediatrics
(Cristian and Sege2010).
It has been argued that there are many benefits of CDR and that a formal Child Death Review should be provided in all countries to understand how and why children die in order to
prevent future child deaths (Fraser et al. 2014). In addition,
according to the Convention on the Rights of the Child, every nation should take appropriate measures to diminish infant
and child mortality (Unicef1989). From this point of view,
there seems to be a need to also implement CDR in The Netherlands. Parents in the first place, but also the Dutch government and local authorities are responsible for the wellbeing and safe development of every child. When a child dies, professionals from several organizations are in-volved. These professionals have different roles, tasks and responsibilities and approach the death of a child from differ-ent perspectives. Professionals have systematically reviewed cases of Sudden Unexpected Deaths in Infants (SUDI) since 1996 and perinatal deaths since 2009 in a multidisciplinary way in order to further prevent those deaths. In cases of un-explained death in minors efforts have been made, commis-sioned initially by the Ministry of Security and Justice, to d e v e l o p t h e s o - c a l l e d N O D O p r o c e d ur e ( F u r t h e r Examination of the Causes of Death; in Dutch: Nader Onderzoek DoodsOorzaak) starting from the first proposal by the consulting firm Van Montfoort in 2000. The necessary legislative changes were introduced in 2010 and 2012 (NVK/
VWS2016). The NODO procedure, requesting further
exam-ination of the child’s death in order to clarify the primary cause
of death (Dutch-Government 2010; Dutch-Government
2012), was implemented in a national pilot test from 1
October 2012 to 31 December 2013. After the evaluation of the pilot period, the Ministry of Health, Welfare and Sport concluded that further examination into the causes of death should be organized regionally in a less extensive procedure. To achieve this, organizations involved in child deaths devel-oped a multidisciplinary guideline that describes the proce-dure in case of unexplained death in minors (NVK/VWS
2016). This procedure, titled NODOK (Further Examination
of the Causes of death in children, in Dutch Nader Onderzoek naar de DoodsOorzaak van Kinderen), has been in use since 1
August 2016 (FMG2016) and implies a systematic
investiga-tion of the unexplained deaths by a multidisciplinary team, consisting of a pediatrician, forensic physician and patholo-gist, installed in six academic hospitals in The Netherlands.
In the eastern part of The Netherlands, a pilot implementa-tion project of CDR was conducted from September 2009 to December 2013 [INTERREG Deutschland-Nederland (INTERREG Germany-The Netherlands)]. Within the frame-work of this pilot implementation, we performed a baseline measurement in which we inventoried how Dutch organiza-tions involved in the (health) care for children responded to a child’s death in April 2011. We compared the characteristics of the organizations’ procedures with the objectives of CDR. In this context we answered the research question to what extent the existing procedures of organizations involved in the (health) care for children in The Netherlands cover the
four CDR objectives in responding to a child’s death.
Methods
Study design
We used a qualitative, descriptive design to answer the abovementioned research question.
Identification of stakeholders
An inventory of organizations that are involved in the (health) care for children in the eastern part of The Netherlands was made on the basis of the type of organizations in the UK that are working with children and are responsible for their safety
and development (UK-Government2013). The identified 22
Dutch stakeholder organizations are outlined in Table 1, of
which one is the hospital (department of pediatrics). Eight hospitals are identified in the pilot region, including one top clinical hospital with a neonatal intensive care unit. Six
stake-holders are only organized on a national level (Table1). In
Ta b le 1 Overview of Dutch or ganizations involved in a child ’s death, their protocols, g uidelines and other w orking agreements in cluded for analysis. In brackets the number of pro fes sionals who w ere app roached to provide documents Or ga niz ati on T itl e o f docu m en t avai labl e for anal y sis D esc ri p tion o f the tas k s/ac tivi tie s 1. Hospital d epartment o f p ed iat rics [10] a. Dutch A ssociation for Pediatrics-Act ion p ro toc ol afte r cot de ath Pr oc ed ure s are ai med at det er min ing the ca use of dea th and av oid ing fa ls e susp ici on o f pa re nts b . De ath o f a ch ild (a t em er g en cy d ep t.) Atte ntio n is p ai d to n ea rn es s to the dying child, spi ritual ca re an d af ter ca re fo r p ar en ts. Su ppo rti ng pa rent s is m ost impo rta nt in thi s pr oto co l c. Em er g en cy b ap tism at an inf an t’ s d ea th This p rot oc ol pr ov ide s fo r an eme rg en cy ba ptis m w he n a ch ild is dyi ng an d the par ents wa nt th eir ch ild b ap tiz ed . P ar en ts ’ wis hes ar e cen tr al d . De ce as ing o r d ying The aim is ta kin g le av e o f the dy ing o ne an d p rovi ding spi ritu al ca re e. Pr oc ed ur es fo r ex ter na l cau se o f d eath A few p o ints o f inte re sts ar e b rie fly de sc rib ed , e. g. , the ex ec utio n o f th e au to p sy and informing the famil y. It is h ard to class ify this p rotocol 2. Gene ra l p ra ct ice [1 ] Du tc h A sso cia tio n for Pe dia tri cs — Action p ro toc ol afte r cot de ath (sa me a s o rgan izat ion 1 ) Pr oc ed ure s are ai med at det er min ing the ca use of dea th and av oid ing fa ls e susp ici on o f pa re nts 3. Fo re nsic me dic al se rvi ce -p ar t of the Mu nic ipa l H ea lt h S er vic e [2 ] a. W o rk in str u ct io n ‘r ep o rting d ece ased m ino rs ’ Acc or ding to a fl owch ar t th e mu nic ipa l fore ns ic p hys ici an dra ws a co nc lusi on abou t the ma nne r and ca use of dea th b. Gui d el ine forensic p ostmort em examinati on The p rotocol d escri b es the respons ib il ities o f the municipal forensi c p hysi cian, what to de te rm ine (e .g. , caus e o f de at h) , w ho to inf or m abou t the de at h an d ho w to rep ort 4. Ambu lan ce se rvi ce [2 ] N atio na l p ro to col amb ula n ce ca re T he m ain ai m o f this guid el ine is pr ov idin g for ac u te ass ista nc e. So me atte nt ion is pa id to (de te rm inin g ) S UDI and to th e g rie vin g pr oc es s 5. Preventive child hea lthcare [1] Guideline coun seling famili es in child death W hen a ch ild d ies Pr ev en tive C h ild Hea lt hca re cont ac ts th e p ar en ts toc o n so le th em an d to info rm the m ab out af ter car e reg ar din g the gr ie ving pr oce ss 6. Munici pal h ealt h services [1] a. Guid eline counsel ing families in child death (sa me as or ga niza tion 5 ) W h en a ch ild d ies Pr ev en tive C h ild Hea lth ca re cont acts the p arents to consol e them an d in fo rm the m ab o u t af ter car e reg ar d in g th e g ri ev in g p ro cess b. Prot ocol lar g e-s cale sexual abuse This prot ocol coul d b e u sed to p revent social tumult in the context of child mortality . R elief an d as sistan ce ar e p ar t o f it 7. Hosp ita l soc ia l w or k [1 ] In te rv ie w re por t A mem o ri al day fo r d ece ased ch ild ren is o rg an ize d in th e h ospi tal without g uidelines , so n o pr oto col co uld b e ana lyz ed 8. Gene ra l soc ial w o rk [1] No usa b le pr oto co ls T he p ro toc ol re tr ie ve d w as not aim ed at chil d mo rta lit y 9. Me nta l Hea lth T rust [3] a. Suic id e and ex te rn al ca use o f d ea th The m ain aim is inf o rm in g th e rig h t p ro fe ss io na ls and o rg ani zatio ns and rep or ting ab out the d ea th. N one of the fo ur o bje ct ive s is ce ntr al; the re fo re , th is pr oto co l ha s not bee n cl assif ie d b. External cause o f d eath in admi tted p atient in side of the clini c Re spo n si bili tie s o f the pr ofe ss iona ls invo lve d in the co n te xt of de te rmi n in g the ca u se o f d ea th an d g rief co u n se lin g are d escr ib ed c. Ext ernal caus e o f d eat h in admitted p atient outs ide o f the clinic Re spo n si bili tie s o f the pr ofe ss iona ls invo lve d in the co n te xt of de te rmi n in g the ca u se o f d ea th an d g rief co u n se lin g are d escr ib ed d . Exte rn al ca use o f d ea th in ambulatory patient outs ide o f the clinic Ad m inis trativ e tas k s of the p ro fes si on als inv o lve d aime d at de term in in g the ca use of de ath ar e cen tr al 10 . M EE [1 ] Inte rvie w re por t T his o rg an iz at ion d oe s not use p ro to col s in ca se o f child de ath 11 . C hild W el fare A gency [1] Guidelines death o f a juv en ile clie nt This p rot oc ol is a p ra cti ca l de sc rip tion o f inf orm ing the rig ht pr of es sio n al s an d or ga niz ation s. S ome atte ntio n is p ai d to supp ort ing th e p ro fe ssi ona ls in vol ve d an d the fa mil y 12 . C hild Pr ote ction S er v ice [1 ] Inte rvie w re por t T he p ro toc ol re tr ie ve d w as not aim ed at chil d mo rta lit y 13 . P olic e [1] In te rv ie w re por t P ro ce d u re s are pe rf or med to d ete rm ine ca us e o f d ea th 14 . P ubli c p ros ec uto r [1] Inte rvie w re por t P roc ed ure s are pe rf or med to d ete rm ine ca us e of de at h 15 . S cho o l/ day ca re /p lay gr oup [4] P ro toc o l in case o f d ea th This p rot oc ol is a g eneral guideline h ow to deal with practical aspects o f p roviding inf or mat ion, or ga ni za tion al adj ustm en ts an d g ri ef co un seling in case o f a ch ild ’s de ath
Table 1 use a protocol, guideline or other type of working agreement.
Identification of CDR characteristics
We used the UK CDR method, as described in the document ‘Working Together to Safeguard Children’ (UK-Government
2013), to identify a list of objectives to analyze in our study.
CDR in the UK is a standardized process that is described clearly and in detail, and it includes all child deaths (Fraser
et al.2014). It consists of two interrelated parts: (1) the Rapid
Response (RR), undertaken by a special team immediately after a sudden and unexpected death of a child, and (2) the Child Death Overview (CDO) undertaken by a panel, a few months after a child death, including the RR cases. The RR team is directed at determining the cause of death, identifying any contributory factors and ensuring ongoing support of the
family (Sidebotham and Pearson2009). CDO panels’ main
targets are systematic analysis of the information provided by the professionals who were involved before and around the time of death in order to identify modifiable factors, mak-ing recommendations for prevention and signalmak-ing patterns or trends in child deaths.
The different characteristics mentioned in the description
of the RR and CDO (UK-Government2013) were used as
criteria to determine the extent to which the procedures of Dutch organizations cover the four CDR objectives. The char-acteristics of RR and CDO were identified by the second author and arranged according to the four CDR objectives.
In the final list of characteristics (Table2a and b), the number
of characteristics varies by CDR objective. The whole proce-dure of making the list of characteristics was checked by the first and fourth author independent of each other, and differ-ences were discussed until consensus was reached. Prerequisites like working agreements directed at communi-cation were not included in the set of characteristics.
Data collection
In April 2011 all inventoried organizations were asked to vide information on procedures, laid down in established pro-tocols, guidelines or other working agreements (referred to
below as‘guidelines’) that describe their responsibilities and
activities in case of a child’s death. If written guidelines were not available, information was obtained by means of semi-structured interviews with professionals as representatives of their organizations. These interviews were written out. Main characteristics of the procedures concerning the responsibili-ties and activiresponsibili-ties of that organization in responding to child deaths were identified. Subsequently, it was determined what CDR objective(s) correspond(s) with regard to these characteristics. Ta b le 1 (continued) Or ga niz ati on T itl e o f docu m en t avai labl e for anal y sis D esc ri p tion o f the tas k s/ac tivi tie s 16 . P er ine d a[1 ] L o ca l audit P ro fe ss ion als an aly ze the pr ovi ded ca re in a str u ct ur ed way to im p rove the qua lit y o f care. G etting ins ight in avoidable fac to rs in perinatal d eaths is important 1 7 . N at io na l Co t De ath Stu dy Gr ou p a[1 ] D u tc h Cot D ea th Fo und ati o n P ro fe ss ion als an aly ze the pr ovi ded ca re in a str u ct ur ed way to in v estig ate w he the r SIDS was the cause o f d eath. Pr ev en ting S ID S and inf orm ing and ad vis ing p ar en ts are the ma in g oal s 18 . D utc h Cot D ea th Foun da tion a [1 ] Inte rvie w re por t T his o rg an iz at ion d eli v er s evid en ce -b as ed info rm ati on fo r p ro fe ssi ona ls an d p ar en ts by m ea n s o f a webs ite 19 . A sso ci ati on for Pa re nts of a De ce as ed C hi ld a[2 ] No pr otoc ol s N o p ro to co ls re tr ie ved b ec au se of no re spon se 20 . D utc h Sa fe ty Firs t A sso ci ati o n [1] In te rv ie w re por t T his o rg an iz at ion foc use s o n de ve lop ing in te rv ent ion s in th e co n tex t o f ch ild m o rt ali ty 21 . C ons ume r Saf ety In sti tute a[1 ] Inte rvie w re por t T his o rg an iz at ion foc use s o n de ve lop ing in te rv ent ion s in th e co n tex t o f ch ild m o rt ali ty 22 . D utc h Sa fe ty Boa rd a [1 ] Inte rvie w re por t T his o rg an iz at ion foc use s o n de ve lop ing in te rv ent ion s in th e co n tex t o f ch ild m o rt ali ty a Or ganized on a national level
One out of 22 organizations (Table1) did not respond to our request (parents’ association). Of the remaining 21 orga-nizations, 12 provided a total of 18 guidelines that were rele-vant for answering our research question.
Of the 21 organizations, 9 did not have any written guideline
that describes how to act in case of a child’s death.
Representatives of those nine organizations (Hospital Social Work; MEE, an organization that provides support to people with intellectual disabilities or chronic illness; Child Protection Service; Police; Public Prosecutor; Dutch Cot Death Foundation; Dutch Safety First Association; Dutch Consumer and Safety Institute; and Dutch Safety Board) were asked for an interview. The website of the Dutch Cot Death Foundation has been part of the Netherlands Centre Youth Health (NCJ) website since April 2015. Eighteen written guidelines and nine
interview reports were available for analysis (Table1).
We did not include the concept NODO procedure as it had not yet been established in April 2011. However, the work instruction “Reporting deceased minors” (valid and mandatory from 1 January 2010; developed for the purpose of the consultation of a municipal coroner) was one of the 18 written guidelines. Data analysis
To measure the extent to which the procedures of the abovementioned organizations cover the four CDR objectives, scorecards were used with the characteristics arranged by the CDR objective. For each of the 18 retrieved written guidelines and 9 interview reports a scorecard was filled in. The question whether the description of responsibilities and activities in the guidelines and interview reports corresponded with the
charac-teristics of CDR on the scorecard could be answered with‘yes,’
‘toalimitedextent’or‘no.’Incaseofuncertaintytheguidelineor interview report was scored again by the second author and discussed with the third author after which a definitive decision was made. Finally, for each of the guidelines and interview re-ports the second author completed the scorecards.
Results
The extent to which the procedures of organizations involved in the (health) care for children in The Netherlands cover the
four CDR objectives is shown in Table2a, b and Appendix1,
2,3and4. Below, for each of the CDR objectives, we
sum-marize the findings.
‘Improve the quality of the procedure of determining the cause of death as well as the quality of the causes
of death statistics’
The CDR objective directed at the improvement of the quality of the procedure with regard to the determination of the cause
of death as well as the death statistics is mainly found in the ‘Action protocol after cot death’ of the Dutch Association for Pediatrics and the procedures of the Public Prosecutor, the Child Protection Service and the National Cot Death Study
Group (Table2a and Appendix1).
Half of the participating organizations describe in their pro-cedures which professionals have to be involved in the inves-tigation in determining the cause of death shortly after the death of a child. Only two organizations, the Forensic Medical Service and the National Cot Death Study Group, pay (some) attention to defining how the collaboration be-tween physicians and the municipal forensic physician could
be constituted (Table2a and Appendix1).
Eight organizations describe in their procedures that results of the review need to be passed on to a national institution a few months after the death of a child. No organization focuses in their procedures on the need to analyze the actions of pro-fessionals in determining the cause of death and to provide feedback on this to improve the quality of the procedure with
regard to the determination of the cause of death (Table2a and
Appendix1).
‘Identify avoidable factors that give directions
for prevention’
In general, the CDR objective directed at the identification of avoidable factors that give directions for prevention is most recognizable in the procedure of the Child Protection Service, Perined, the National Cot Death Study Group and the Dutch
Cot Death Foundation (Table2a and Appendix2).
Only three organizations specifically describe in their pro-cedures that relevant institutions and professionals should be consulted in order to register possible avoidable factors short-ly after the death of a child. Also, four organizations have their major focus on recording (new) avoidable factors of child
deaths during the investigation (Table2a and Appendix2).
Six organizations have a major focus on the identification of avoidable factors and learned lessons as well as on working together with regional and national institutes to identify learned lessons a few months after the death of a child. None of the organizations has a major focus in their proce-dures on the categorization in factors intrinsic to the child, the family and environment, the parenting skills and service pro-vision. Of the four organizations that have a minor focus in their procedures on this characteristic, only the Consumer Safety Institute distinguishes between behavioral, product
and physical factors (Table2a and Appendix2).
‘Translate the results into possible interventions’
The CDR objective directed at the translation of identified factors into possible interventions is mainly displayed in the procedures of the institutes for mental health care directed at
Ta b le 2 Cha ra cte ris tic s o f the Ra pid Resp onse (R R) and Chi ld D ea th Ove rvie w (C DO) , ar ra nged ac cor ding to the C hild De ath Re v iew o b jec tive , and o rg an iza tion st h ath av e th es e char act er is ti cs as a m aj or or mi nor fo cus . (a ,b ,c ,d ) ref er to the documents available for analysis mentioned in T able 1 Or ganizations with procedures with Major focus (+ in the appendix) Minor focus (± in the ap pendix) A Objective ‘I m p rove the quality of th e procedure w ith regard to the determination o f the cause o f death as w ell as the death statistics ’ RR Rap id res po nse actio ns ex ist in case s o f u n ex p lain ed d ea th De pt. o f P ed iatr ic s (a) , G P, F o re n sic Med . S erv ice (a ), Cot D ea th F oun d. Child W elf are A g en cy , C h ild Pr o tec tion S er v ic e, P u bl. P ro sec u to r, Na tion al C ot D ea th S tu dy Gr o up It ha s b een de fin ed w h o w ill lead th e investigation to de ter m in e th e ca us e o f d ea th F o re nsic Me d. S er v ic e (a) , M en ta l H ea lth S erv ic es (b ), Me nta l He alth T ru st (b, c, d) , C hild Pr ote ctio n Se rv ice , P o lice, Publ. P ro secutor , Pe rine d, N atio na l C o t De ath S tud y Gr o up , C ot D eat h F ou nd . D ep t.o fP ed ia tr ic s (a ),G P, S o ci al W o rki n h o sp . It h as b ee n d ef ine d w hic h pro fe ssion als h av e to b e involved in the investiga tion to d etermine the cause of de ath Dept. o f P ediatr ic s (a) , G P, For ensic Med. S ervice (a), Me nta l He alth T ru st (b, c, d) , C hild Pr ote ctio n Se rv ice , P o lice , P u b l. P ro se cu tor , P erine d, C o t D ea th F o un d. For ens ic Me d. Se rv ic e (b) , A m b u lan ce S er v ic e, Mental Health T rust (a) , C hild W elfare Ag en cy , C ot D ea th C omm . It ha s b een de fin ed w h at h as to be in ve stiga ted . T his includes: d ata coll ect io n from rel ev ant institutions an d p ro fe ssio n al s, po stm o rtem investigation and investigation at the place o f d eath and circumstances of the d eath Dept. o f P ediatr ic s (a) , G P, National Cot Death S tu dy Gro up D ep t. o f P ed ia tric s (e ), F o ren sic M ed . S erv ice (a ,b ), Men tal He alt h T ru st (b ,c, d) , C h ild P ro tec tion S er vic e, P o lice, Publ. P rosecutor Res u lts are colle cte d an d rep res en ted ac co rd ing to national criteria Dept. o f P ediatr ic s (a) , G P, Child Protection S er vice, P o lice, Publ. P ro secutor , Perined For ens ic Me d. Se rv ic e (a) , M en tal H ea lth T rust (b, c, d ), C ot De ath F ou nd . It ha s b een de fin ed h o w the re latio ns h ip b et w ee n ph ys ic ian s an d th e for en sic ph ysic ian cou ld b e cons ti tuted F o re nsic Me d. S er v ic e (a) Co t D ea th F o un d. It h as b ee n d ef ine d h ow o ften and wh en th e invo lve d pr ofessionals h ave to d iscuss the results of the investigation to d eter min e the ca u se of de ath F o rensic Med. Ser v ice (a) , P o lice, Publ . P ro secu tor D ep t. of Ped ia tric s (a ), G P, F ore n si c M ed . Se rvic e (b) , M un ic. H ea lth Se rvic es (b ), National C ot Death S tudy Group Relevant institutions and p ro fessionals, such as school an dG P,a rec o n su lt edt og et re levant information ab o u t the po ss ib le ca us e o f d ea th Child Protection S er vice, P o lice, Publ. P ro secutor , N at ion al Cot D ea th Stud y G ro u p For ens ic Me d. Se rv ic e (b) , M un ic. H ea lth Se rvic es (b ) CDO T he re sults of the revie wa rep as se do nt oan at io n al institution De pt. o f P ed iatr ic s (a) , G P, Me nta l He alth T ru st (b, c, d) , P er ine d, N at ion al C o t D ea th Stud y G ro u p Child P ro tection S ervi ce , P ub l. Pr os ec u tor , Co t D ea th F o un d. A for m at to g et sp ec ific da ta ab ou t a pa rtic ula r ca u se of de ath is u se d Dept. o f P ediatr ic s (a) , G P, National Cot Death S tu dy Gro up P erine d, Co t D ea th F o un d. The actio ns of pr ofe ssio n al s in v o lve d in d ete rminin g the cau se of de ath are an aly ze d --Fe ed ba ck is gi v en to pr o fe ss io nals on their actions in d ete rm inin g th e ca us e o f d eat h --N ew re lev an t inf or ma tio n re g ar din g the ca u se of de ath an df ac to rs co n tr ib u ti n gt ot h e d ea th , w h ic hi s obtained in the long run, is p rovided to all p ro fes si on als inv olv ed in the d ea th Child Protection S er vice, P u b l. Pr os ec uto r, P er in ed Poli ce, C o t De ath F o u nd . Objective ‘I d entify avoidable factor s that g ive d irections fo r p rev en tion ’ RR Relevant institutions and p ro fessionals, such as school an dG P,a rec o n su lt edt og et mo re info rmatio n ab o u t Child P rote ctio n S erv ice , C ot Dea th F ou nd. , Sa fe ty B o ar d For ens ic Me d. Se rv ic e (b) , M un ic. H ea lth Se rvic es (b ), Pub l. P ro se cu tor , P erin ed ,
Ta b le 2 (continued) Or ganizations with procedures with Major focus (+ in th e appendix) Mino r focus(± in the appendix) the child, h is/her soci al cir cum st an ces an d en vir o nm en t in th e co n tex t o f avo ida b le fa cto rs o f child mortality N at ion al C ot D eat h S tud y G rou p, C o ns um er S afe ty Inst. During dat a collection fro m relevant instituti o n s and p rof ess iona ls, p ostmor tem exa m in atio n an d investigation at the place o f d eath and circumstances of the d eath, attention is p ai d to (ne w) av oida ble factors o f child m o rtality Dept. o f P ediatrics (a), G P, Child Protection S ervi ce , C o t D ea th Fo un d. P u bl. P ro se cu tor , N atio na l C ot De ath S tud y Gro up CDO A voidable factors o f child m o rtality and les sons lear ned are identified Dept. o f P ediatrics (a), G P, Child Protection S ervi ce , P er in ed , Na tion al C ot D ea th S tu dy G rou p, Co t De ath F ou nd . Mental Health T rus t (a), P olice, Publ. P ros ecutor , S afe ty F ir st A ss oc ., C ons umer S af ety In st., Sa fe ty B o ar d A d is ti nction is m ade in facto rs int rinsic to the child, famil y an d en v ir o n me nt al fa cto rs , pa re ntin g cap aci ty , an d ser v ice p ro v is io n -C hild Protection S er vi ce , P er in ed , C on sum er S afe ty Inst. , Saf ety Boa rd P ro fes sion als inv olv ed w o rk tog eth er w ith re gio n al an d national institutions to id entif y lessons learned Dept. o f P ediatrics (a), G P, Child Protection S ervi ce , P er in ed , Na tion al C ot D ea th S tu dy G rou p, Co t De ath F ou nd . S o cial W o rk in Hosp., Publ. P rosecutor , Saf ety F irs t A ss o c., Co ns u m er Sa fe ty In st ., S af ety Board After identifying avoidabl e factors of chil d m ortality , th e exte n t o f the p rob lem is d et er m in ed and (g rou p s o f) p eople m os t af fe cte d b y the p ro b le m are so rte d ou t P er in ed , Na tion al C ot D ea th S tu dy G rou p, Co t D ea th Fo un d. , S af et y B oa rd Child Protection S er vice, P u b l. Prosecutor , S afe ty F ir st A ss oc ., C ons umer S af ety In st. B Objective ‘T ran sl ate th e re su lts into poss ible intervent ions ’ RR In fo rm atio n re lev an t fo r im me dia te p re v en tio n (e.g ., protection o f o ther child re ni nt h e fa m il y ) is dis cus sed b y th e ra pi d re spo ns e te am Mun ic. He alth S er v ic es (b) , Men tal H ea lth T rus t (b ,c ), Chi ld W elf are Agency , C hild Protection S er vice Ambu lan ce S er vic e, P olic e It h as b ee n d ef in ed w h ic h imm ed iate preventive mea su res ha ve to b e ta ke n, w h en ne ce ssa ry Me nta l H ea lth T rus t (b,c ), C hild P ro tec tion Ser v ice Ch ild W elf ar e A ge nc y CD O R es ea rc h end s w ith a d is cu ss io n h o w su ch a d ea th ca n b e av oide d in the fu ture P er in ed , Na tion al C ot D ea th S tu dy G rou p, Co t D ea th Fo un d. Me nta l He alth T ru st (b, c) , C hil d Pr ote ctio n Se rv ic e, Sa fe ty B o ar d Recom m endations, actions to b e pe rfo rmed an d les son s learned are passed o n to relevant authorities o r indivi d u als Me nta l H ea lth T rus t (b,c ), C hild P rotection S ervice, P er in ed , Na tion al C ot D ea th S tu dy G rou p, Co t De ath F ou nd ., S afe ty F irs t F ou nd ., Co ns umer S afe ty In st., Sa fe ty Bo ar d Mun ic. He alth S er v ic es (b ), Men tal H ea lth T rus t (a, d ), Pub l. P ro se cu tor Recom m endations, actions to b e pe rfo rmed an d les son s learned are passed o n to g overnm en tal ins tit u tions to impr ove P u bl. h ea lt h Na tion al C ot D ea th S tu dy G rou p, Co t D ea th F o u n d ., Saf ety First F o u n d ., Con sume r Sa fety In st. , S afe ty Bo ard Child Protection S er vice, P u b l. Prosecutor , Pe ri n ed It h as b ee n d ef in ed w h o is respons ible for (taking ca re o f) ca rry ing o u t th e im p rov eme nts Pe ri ne d, Sa fe ty Fir st F ou nd ., C o ns u m er Saf ety In st ., Sa fe ty Bo ard Me nta l He alth T ru st (b, c) Objective ‘S u p por t to the fa mily ’ RR The p ote n ti al ne ed s o f rela tive s ar e ide ntif ie d D ep t. of Ped iatr ic s (b ,d ), Pr ev en tiv e Child H ealth ca re , Mu nic . He alth Ser v ic es (a ,b ,) , S o cia l W or k in H o sp., Chi ld W el fa re Ag en cy , S ch o o l De pt. o f P ed iatr ic s (a, c) , G P, Me nta l He alth T rus t (b, c) , P u b l. Pr o se cu tor , N atio na l C ot De ath S tud y G ro up, C o t D ea th F o un d. When a child died in the h osp ita l, pa re nts are su pp or ted by a d es ignated p rofes sional o f the hospit al Dept. o f P ediatrics (b), social w ork in h osp. Dept . o f P ediatr ic s (d) , M u n ic. H ealth Ser v ices (b) When conditions permit , p ar ents get th e opportunity to be alone w ith their d ecease d child to take leave o f their child Dept. o f P ediatrics (b,d)
external causes of death in- and outside the clinic and the
procedure of the Child Protection Service (Table 2b and
Appendix3).
In the procedures of four organizations specific attention is paid to discussing information for immediate prevention shortly after the death of a child. Only three organizations have defined in their procedures which preventive actions
should be taken (Table2b and Appendix3).
Eight organizations particularly focus in their procedures on the aspect of informing relevant authorities and individuals a few months after the death of a child about the recommen-dations, actions to be performed and lessons learned. In the procedures of only three organizations it is specifically de-scribed that an investigation ends with a discussion of how
to prevent such a death in the future (Table2b and Appendix
3).
‘Support of the family’
The CDR objective directed at the support of the family is mainly included in the procedures of the Department of
Pediatrics described in ‘Death of a child,’ of the Hospital
Social Work, and of the Municipal Health Services, directed at prevention of social anxiety in serious traumatic incidents,
for example, in case of child abuse and child deaths (Table2b
and Appendix4).
Half of the participating organizations pay attention to the potential needs of relatives shortly after the death of a child, for example, needs concerning washing and dressing the de-ceased child and farewell rituals. No organization, except the department of pediatrics in the hospital, describes that parents get the opportunity to be alone with their deceased child to take leave of their child. In addition to this, no organization describes in their procedures how to act in the rare situation that the parents and the deceased child do not live in the same
country (Table2b and Appendix4).
Almost half of the participating organizations describe in their procedures the follow-up of relatives a few months after the death of a child, where feedback is given about the cir-cumstances of and factors that contributed to the death and grief counseling is provided. The analysis of the actions of professionals in supporting grief counseling to relatives is
de-scribed in the procedures of only four organizations (Table2b
and Appendix4).
Discussion
Quite a few organizations are involved in child deaths in The Netherlands. The procedures of these organizations, laid down in protocols, guidelines and working agreements, ob-tained in April 2011, were systematically compared to the objectives of CDR. In the analysis it was determined to what
Ta b le 2 (continued) Or ganizations with procedures with Major focus (+ in th e appendix) Mino r focus(± in the appendix) Pa re nts ar e in fo rm ed ab ou t u p-to -d ate fin di ng s o f the re se arc h , u nle ss this o b struc ts th e re sea rc h Dept. o f P ediatrics (a), G P, Munic. Health Ser v ices (b ), Polic e Dept. o f P ediatr ic s (d) , Me nta l He alth T ru st (b, c) It ha s b ee n d ef ine d ho w to act whe n pa re nts an d th e de ce as ed ch ild do no t liv e in th e sa m e co un try --Af te r comp le tion o f th e rap id res po ns e, fu rt he r (p sy ch olo g ica l) assis tan ce is rendered to the relatives Dept. o f P ediatrics (b), P re ventive C hild Healthcar e, Mun ic. H ea lth Se rv ic es (a ,b ), Soc ial W o rk in Hosp., Mental Health T rust (a ,b ,c ,d ), Co t D ea th Fo un d. C h ild W elf ar e A ge nc y, Sc ho ol C D O T he ac tio ns of pr o fe ssio n al s in su p p o rtin g gr ie f cou ns elin g to re lativ es ar e an aly ze d Dept. o f P ediatrics (b), Munic. H ealth Se rvic es (b ) S o cia l W or k in H osp ., Me nta l He alth T ru st (a) Relatives are k ept in touch in the long run, wh er eb y fe ed b ac k is g iv en o n re se ar ch of (f actors cont ri buted to) the d eath and gr ief co un se li n g Dept. o f P ediatrics (b), Munic. H ealth Ser v ices (b) , National C ot Death S tudy Gr ou p, Co t D ea th F o u n d . Dept. o f P ediatr ic s (a) , G P, P rev en tive C h il d H ea lth ca re ,M u n ic .H ea lt h S erv ice s (b ), So cia l W o rk in Ho sp. , Ch il d P rote ctio n S ervic e, S cho ol, P er ine d Th e g iv en su pp or t to relatives is monitored Preventive C hild Health ca re ,M u n ic .H ea lt h Se rv ic es (a ,b ), so cia l w o rk in ho sp . De pt. o f P ed iatr ic s (c) , M en ta l H ea lth T rus t (a) , C ot D ea th F o un d. De pt . d ep ar tment, GP general p ra ctitioner , Med . m edi cal , Found . foundation, Publ . p ublic , Hosp . h ospital, Munic. municipal, Inst . in stit ute, Assoc . ass ocia tion
extent the procedures cover the four objectives of CDR used in the UK, namely the (1) improvement of the quality of the procedure with regard to the determination of the cause of death as well as the causes of death statistics, (2) identification of avoidable factors that give directions for prevention, (3) translation of results into possible interventions and (4) sup-port of the family.
When all procedures of Dutch organizations in responding to child deaths are combined, the four CDR objectives are largely covered in the response of these organizations, but only for specific groups of child deaths, namely for perinatal deaths (Perined), SUDI cases (National Cot Death Study Group and Dutch Cot Death Foundation) and fatal child abuse cases (Child Protection Service). It is indisputable that all or-ganizations (should) devote attention to support involved relatives.
These results imply that the different procedures are fragmented in relation to the objectives of CDR and that not all groups of child deaths are covered, such as natural causes of child death other than perinatal deaths and SUDI and death due to intentional self-harm. We consider the insufficient cov-erage as a shortcoming, because it provides us an incomplete overview of avoidable factors in child deaths that hinders targeted preventive measures. With regard to fragmentation this is not necessarily disadvantageous as long as tions are aware of their tasks and the tasks of other organiza-tions in case of a child’s death and communicate and share
information with each other (Durfee and Parra,2009; Durfee
and Gellert,1992; UK-Government2013). Reviews on child’s
death and serious injury in different countries have stressed the importance of inter-agency working (Axford and Bullock,
2005). To take adequate actions to prevent a child’s death and
to support the family, clear local arrangements for collabora-tion between organizacollabora-tions are needed.
Strengths and weaknesses of this study
One of the strengths of this study is the broad scope that is used to identify the organizations and to analyze their proce-dures. Another strength is the high response rate of the orga-nizations that have been approached. Only one organization, the parents’ association, did not react to our request to partic-ipate in this study. Although all hospitals in our pilot region have been approached and gave insight in their procedures, the procedures of the academic hospitals located outside our study region were not obtained. Therefore, some caution is required in the interpretation of the results as some of the children die in an academic hospital. Apart from this limita-tion, the quantity of retrieved procedures provides us an al-most complete overview of the procedures in responding to child deaths in the Eastern part of The Netherlands and of some organizations involved at a national level in April 2011. However, the NODOK procedure, which has been in
use since August 2016, was not evaluated in our study. The systematic analysis of cases of unexplained death in children up to 18 years old according to this NODOK procedure un-doubtedly includes several aspects of the CDR objectives.
A weakness in this study is the fact that we did not examine whether and to what extent the organizations actually act in case of a child’s death according to these procedures. Professionals within these organizations may provide other care than defined. We also did not examine to what extent organizations have a multidisciplinary case discussion within their own organization after a child has died. Further research could give insight into the adherence to protocols, guidelines or other working agreements by professionals.
Conclusions
Whereas CDR examines all child deaths, the procedures of the organizations in this study that cover parts of the four CDR objectives focus on a particular part of child mortality only. Consequently, a complete overview of avoidable factors that give directions for prevention of child deaths is lacking. Another conclusion is that support of the family should be more systematically included in the procedures of organizations.
Further research into the conditions that are needed for an optimal implementation of CDR in The Netherlands is neces-sary. If the responsibilities and activities were better coordi-nated among organizations involved, the four objectives of CDR could be better achieved in the majority of (natural) child deaths. CDR might then only be indicated for particular groups of child deaths, e.g., in unexpected, unexplained child deaths, to achieve its objectives. The recently implemented NODOK procedure may provide this systematic approach in this particular group of children.
Acknowledgements S. Gijzen would like to acknowledge INTERREG Deutschland-Nederland as the leading financier and The Ministry for Youth and Families, Land NRW, Land Niedersachsen, University of Twente, University of Münster, TNO Child Health, Menzis Health Insurance, MKB Netherlands, Foundation ‘Kinderpostzegels’ Netherlands, Kassenärztliche Vereinigung NRW and Lionsclub Hamaland for financially supporting this study as part of the SERRAFIM project (grant no. III-3-02-086).
Compliance with ethical standards
Ethical approval The METC Twente (Medical Ethical Review Committee Twente) reviewed the project plan for ethical permission and decided the study was not subject to the Medical Research Involving Human Subjects Act (METC/11011.boe).
Conflict of interest The authors declare that they have no conflict of interest.
Ta b le 3 Extent to which procedures of Dutch or g anizations covere d the CDR objective ‘Impr ove the quality of the pr ocedur e w ith regar d to th e de terminatio n o f the cause o f d eath as w ell as the d eath statis tic s’ (y es +; to a limit ed exte nt = ± ; n o = − ) Or ganization/ professional T itle of d o cument ava ila ble for ana lysi s RR1.1 RR 1.2 RR1. 3 RR1.4 RR1 .5 RR1. 6 R R1.7 RR1. 8 CDO 1 .1 CDO 1 .2 CD O1. 3 C D O1. 4 CDO 1.5 De pa rtm en t of Pe dia tr ics an d G P D u tch Asso ciatio n fo r Pe d ia trics-Ac tio n pr oto co l af te r cot de at h +± + ++ − ± − ++ −− − Death o f a Child − − − − − − − − −−−− − Eme rge nc y B apt ism − − − − − − − − −−−− − Deceasi ng or Dyi n g − − − − − − − − −−−− − Proc edur es in Ext er na l Ca us e of D ea th −− − ± − − − − −−−− − Fo re nsic Me di ca l S er vic e W o rk Ins tru cti on ‘R ep o rt in g D ec ease d M ino rs ’ + ++± ± + + − −−−− − Guidel ine F orensi c P os tm or tem E xa mina tio n −− ±± −− ±± −−−− − Ambu lan ce S er vic e Nat ion al Pro toc ol Am bul an ce Ca re −− ± − − − − − −−−− − Preventive C hild Healthcare/Municipal Healt h Se rv ice s Guidel ine C ouns eli n g F amilies in C hild Death − − − − − − − − −−−− − Prot oc ol La rg e sca le Se xua l A b u se − + −− − ±± −−−− − Ho sp ital S oc ial w or k er Inter v ie w re po rt − ± − − − − − − −−−− − Me nta l he al th tr ust S uic ide an d E xte rnal C au se of Dea th −− ± − − − − − −−−− − Exte rn al Ca use o f D ea th In si de of th e C li nic − ++± ± −− − + −−− − External Cause o f D eath outs ide o f the Cli n ic − ++± ± −− − + −−− − Exte rn al Ca use of D ea th in Ambulatory Pati ent Outs ide o f the Cl inic − ++± ± −− − + −−− − M E E Inter v ie w re po rt − − − − − − − − −−−− − Ch ild W el fa re A ge nc y G uid el ine s D ea th of a Ju ven ile Cl ien t ± − ± − − − − − −−−− − Ch ild Pr ote cti on Ser v ic e In te rvi ew re p o rt ± + + ± + −− +± −−− + P o lice Inter v ie w re po rt − ++± + − ++ −−−− ± Pu blic Pros ec uto r In te rvi ew rep ort ± + + ± + − ++± −−− + Sc ho ol Prot oc ol in Ca se of De at h − − − − − − − − −−−− − Pe ri ned P er ine d − ++ − + −− − +± −− + Nati ona l C ot De at h S tudy Gro u p D utc h Cot D ea th Foun da tion ± + ± + −− ±+ + + −− − Dutc h C ot De at h F oun dat ion In te rvi ew rep ort + + + − ±± −− ±± −− ± Dutc h S af et y F ir st Asso cia tio n In te rvi ew re p o rt − − − − − − − − −−−− − Consumer Safety Institu te Intervi ew report − − − − − − − − −−−− − Dutc h S af et y B oar d In te rvi ew rep ort − − − − − − − − −−−− − RR1. 1 R ap id re sp ons e act ions ex ist in ca se s of une xp lai ne d de at h RR1. 2 It h as be en def ine d w h o will lea d th e inve stig at ion to d et er mi ne th e ca u se of de ath RR1. 3 It h as be en def ine d w h ich pr ofe ss iona ls h av e to be invo lve d in the inv es tiga tio n to d et er mine th e cau se o f d ea th RR1. 4 It h as been defined what h as to be investigat ed. This includes : data collectio n from relevant ins titutions and p ro fess ionals ,pos tmortem exam ina tion and inve sti g ation at th e pla ce of d ea th and ci rc um sta n ce s o f th e de ath R R 1 .5 R es ults are co llecte d an d rep re se n ted ac co rd ing to n ational criteria RR1. 6 It h as been defined h ow th e collaboration b etween phys ic ia ns and the municipal forens ic p hys ici an could be cons tituted RR1. 7 It h as be en def ine d h ow of te n an d whe n th e invo lve d pr of es sion als h av e to d is cu ss th e res ults of th e inve sti g ation to d et erm ine the ca u se of de at h RR1. 8 R ele v an t insti tuti ons and p ro fe ss iona ls, suc h as sc h o o l and GP , ar e cons ulte d to g et re le va nt in for m atio n ab o u t the pos sib le cau se of d ea th CDO1.1 The results of the review are passed o n to a national ins titution CDO1.2 A format to g et specific dat a abou t a p ar tic ula r ca u se o f d ea th is use d C DO1. 3 The ac tio n s o f pr o fes si on als inv o lve d in d eter min ing the ca u se of de ath ar e an al yz ed CDO1 .4 Fee d b ac k is give n to p ro fe ss ion als on th eir acti ons in de te rmi n in g the ca us e o f d ea th CDO1 .5 Ne w re le v an t in for ma tio n re g ar d ing the ca u se of de ath an d fa ct or s co n tr ibu ting to th e d ea th, whic h is o bta ine d in the lon g run, is pr ovi de d to al l p ro fes si on als inv o lve d aro u n d the d eath Ap pend ix 1
Appendix 2
Table 4 Extent to which procedures of Dutch organizations covered the CDR objective‘Identify avoidable factors that give directions for prevention’ (yes = +; to a limited extent = ±; no =−)
Organization/professional Title of document available for analysis RR2.1 RR2.2 CDO2.1 CDO2.2 CDO2.3 CDO2.4 Department of Pediatrics and GP Dutch Association for Pediatrics-Action protocol
after cot death
− + + − + −
Death of a Child − − − − − −
Emergency Baptism − − − − − −
Deceasing or Dying − − − − − −
Procedures in External Cause of Death − − − − − −
Forensic Medical Service Work Instruction‘Reporting Deceased Minors’ − − − − − −
Guideline Forensic Postmortem Examination ± − − − − −
Ambulance Service National Protocol Ambulance Care − − − − − −
Preventive Child Healthcare/Municipal Health Services
Guideline Counseling Families in Child Death − − − − − −
Protocol Large-scale Sexual Abuse ± − − − − −
Hospital Social worker Interview report − − − − ± −
Mental health trust Suicide and External Cause of Death − − ± − − −
External Cause of Death inside of the Clinic − − − − − −
External Cause of Death outside of the Clinic − − − − − −
External Cause of Death in Ambulatory Patient Outside of the Clinic
− − − − − −
MEE Interview report − − − − − −
Child Welfare Agency Guidelines Death of a Juvenile Client − − − − − −
Child Protection Service Interview report + + + ± + ±
Police Interview report − − ± − − −
Public Prosecutor Interview report ± ± ± − ± ±
School/daycare/playgroup Protocol in Case of Death − − − − − −
Perined Perined ± − + ± + +
National Cot Death Study Group Dutch Cot Death Foundation ± ± + − + +
Dutch Cot Death Foundation Interview report + + + − + +
Dutch Safety First Association Interview report − − ± − ± ±
Consumer Safety Institute Interview report ± − ± ± ± ±
Dutch Safety Board Interview report + − ± ± ± +
RR2.1 Relevant institutions and professionals, such as school and GP, are consulted to get more information about the child, his/her social circumstances and environment in the context of avoidable factors of child mortality
RR2.2 During data collection from relevant institutions and professionals, postmortem examination and investigation at the place of death and circumstances of the death, attention is paid to (new) avoidable factors of child mortality
CDO2.1 Avoidable factors of child mortality and lessons learned are identified
CDO2.2 A distinction is made in factors intrinsic to the child, family and environmental factors, parenting capacity and service provision CDO2.3 Professionals involved work together with regional and national institutions to identify lessons learned
CDO2.4 After identifying avoidable factors of child mortality, the extent of the problem is determined and (groups of) people most affected by the problem are sorted out
Appendix 3
Table 5 Extent to which procedures of Dutch organizations covered CDR objective‘Translate the results into possible interventions’ (yes = +; to a limited extent = ±; no =−)
Organization/professional Title of document available for analysis RR3.1 RR3.2 CDO3.1 CDO3.2 CDO3.3 CDO3.4 Department of Pediatrics and GP Dutch Association for Pediatrics-Actionprotocol
after cot death
− − − − − −
Death of a Child − − − − − −
Emergency Baptism − − − − − −
Deceasing or Dying − − − − − −
Procedures in External Cause of Death − − − − − −
Forensic Medical Service Work Instruction‘Reporting Deceased Minors’ − − − − − −
Guideline Forensic Postmortem Examination − − − − − −
Ambulance Service National Protocol Ambulance Care ± − − − − −
Preventive Child Healthcare/Municipal Health Services
Guideline Counseling Families in Child Death − − − − − −
Protocol Large scale Sexual Abuse + − − ± − −
Hospital Social worker Interview report − − − − − −
Mental health trust Suicide and External Cause of Death − − − ± − −
External Cause of Death inside of the Clinic + + ± + − ±
External Cause of Death outside of the Clinic + + ± + − ±
External Cause of Death in Ambulatory Patient Outside of the Clinic
− − − ± − −
MEE Interview report − − − − − −
Child Welfare Agency Guidelines Death of a Juvenile Client + ± − − − −
Child Protection Service Interview report + + ± + ± −
Police Interview report ± − − − − −
Public Prosecutor Interview report − − − ± ± −
School Protocol in Case of Death − − − − − −
Perined Perined − − + + ± +
National Cot Death Study Group Dutch Cot Death Foundation − − + + + −
Dutch Cot Death Foundation Interview report − − + + + −
Dutch Safety First Association Interview report − − − + + +
Consumer Safety Institute Interview report − − − + + +
Dutch Safety Board Interview report − − ± + + +
RR3.1 Information relevant for immediate prevention (e.g., protection of other children in the family) is discussed by the rapid response team RR3.2 It has been defined which immediate preventive measures have to be taken, when necessary
CDO3.1 Research ends with a discussion of how such a death can be avoided in the future
CDO3.2 Recommendations, actions to be performed and lessons learned are passed on to relevant authorities or individuals
CDO3.3 Recommendations, actions to be performed and lessons learned are passed on to governmental institutions to improve public health CDO3.4 It has been defined who is responsible for (taking care of) carrying out the improvements
Appendix 4
Table 6 Extent to which procedures of Dutch organizations covered the CDR objective‘Support to the family’ (yes = +, to a limited extent = ±, no = −) Organization/professional Title of document available for
analysis
RR4.1 RR4.2 RR4.3 RR4.4 RR4.5 RR4.6 CDO4.1 CDO4.2 CDO4.3
Department of Pediatrics and GP
Dutch Association for
Pediatrics-Action Protocol after Cot Death
± − − + − − − ± −
Death of a Child + + + − − + + + −
Emergency Baptism ± − − − − − − − ±
Deceasing or Dying + ± + ± − − − − −
Procedures in External Cause of Death
− − − − − − − − −
Forensic Medical Service Work Instruction‘Reporting
Deceased Minors’ − − − − − − − − −
Guideline Forensic Postmortem Examination
− − − − − − − − −
Ambulance Service National Protocol Ambulance Care − − − − − − − − −
Preventive Child Healthcare-Municipal Health Services
Guideline Counseling Families in Child Death
+ − − − − + − ± +
Protocol Large scale Sexual Abuse + ± − + − + + + +
Hospital social worker Interview report + + − − − + ± ± +
Mental health trust Suicide and External Cause of Death − − − − − + ± − ±
External Cause of Death inside of the Clinic
± − − ± − + − − −
External Cause of Death outside of the Clinic
± − − ± − + − − −
External Cause of Death in Ambulatory Patient Outside of the Clinic
− − − − − + − − −
MEE Interview report − − − − − − − − −
Child Welfare Agency Guidelines Death of a Juvenile Client + − − − − ± − − −
Child Protection Service Interview report − − − − − − − ± −
Police Interview report − − − + − − − − −
Public Prosecutor Interview report ± − − − − − − − −
School Protocol in Case of Death + − − − − ± − ± −
Perined Perined − − − − − − − ± −
National Cot Death Study Group
Dutch Cot Death Foundation ± − − − − − − + −
Dutch Cot Death Foundation Interview report ± − − − − + − + ±
Dutch Safety First Association
Interview report − − − − − − − − −
Consumer Safety Institute Interview report − − − − − − − − −
Dutch Safety Board Interview report − − − − − − − − −
RR4.1 The potential needs of relatives are identified
RR4.2 When a child died in the hospital, parents are supported by a designated professional of the hospital
RR4.3 When conditions permit, parents get the opportunity to be alone with their deceased child to take leave of their child RR4.4 Parents are informed about up-to-date findings of the investigation, unless this obstructs the investigation
RR4.5 It has been defined how to act when parents and the deceased child do not live in the same country RR4.6 After completion of the rapid response, further (psychological) assistance is rendered to the relatives CDO4.1 The actions of professionals in supporting grief counseling to relatives are analyzed
CDO4.2 Relatives are kept in touch in the long run, whereby feedback is given about the circumstances of and factors contributed to the death and grief counseling
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