Table 3 Recommendations provided by the professionals and parents who participated in the focus groups categorized in four groups of determinants: (1) innovation, (2) user, (3) organization. (4) socio-political context

Innovation

Professionals should document everything in the (medical) file of the child (parents)

A format should be used to guide the conversation with parents in order to obtain consent (parents/professionals). This format describes (1) how to conduct this conversation, (2) when this conversation takes place, (3) who is requesting parental consent and (4) who is providing feedback (professionals)

Feedback of the findings of the CDR team should be given to professionals as well as to the parents with the help of a mediator (parents). Agreements should be made about who is providing feedback to the professionals and parents (for example the attending physician) and how this is provided to them. Feedback to parents should be provided only in case of individual recommendations (professionals). If shortcomings in care are identified, professionals should offer parents their apologies. This was considered important for their grieving process (parents)

When parents are asked to give their consent, they should be informed who is providing them feedback of the findings (professionals)

Professionals, such as the general practitioner, preventive child health care professional or pediatrician, should be approached for information as a standard procedure. The information system of the child can be accessed to see who else is involved in the care of the child/family (professionals)

A guideline/format should be used to help professionals in providing the information needed to review the death. It should be clear how much time the process of information gathering takes (professionals)

Professionals should provide complete and correct information independent from each other to the CDR team (parents)

The benefits of CDR should be emphasized in order to ensure that professionals provide all information to the CDR team (parents)

In case a death is investigated by the Public Prosecutor agreements should be made with the Public Prosecutor/Ministry of Security and Justice for reviewing the death by the CDR team (professionals)

In case of an unexplained death of a child CDR should join the procedure in which these deaths are further examined to clarify the primary cause of death. Data from this procedure can be used for CDR to analyse the death in order to make recommendations directed to prevention (professionals)

User

The CDR team should be an independent team in order to prevent bias (i.e., personal interest) (professionals)

The composition of the CDR team depends on the kind of child death that is being reviewed. The chair should be a ‘heavy’ figure who has an overall view and is objective. He/she has the knowledge and has no interest in a particular organisation. Someone from the Health Care Inspectorate could also be considered as a chair, but this could cause some resistance for professionals to cooperate (professionals)

The CDR team is obliged to get at least one preventive activity out of the recommendations made (professionals)

In order to obtain the cooperation of parents to review their child’s death parents should be informed that autopsy data could be used in the CDR (parents)

In order to obtain the cooperation of parents they should fully be informed about CDR by the general practitioner or pediatrician (parents)

Parental consent should be asked a couple of weeks after the death of the child by the pediatrician, general practitioner, preventive child health care professional or just the person who is involved around the time of death. Parents could also be asked whether they like to be requested by the attending physician or somebody else to give their consent (professionals/parents)

In order to obtain the cooperation of parents and professionals data should be anonimyzed at an early stage to conduct a review (parents/professionals). To reduce traceability to persons deceased children from another region should be reviewed (professionals)

Parents should have the possibility to check whether the information is correct or not before it is provided to the CDR team. The general practitioner, pediatrician or a confidant could support parents in this (parents)

More publicity to the general public is needed, so that parents know that after the death of their child a review is conducted (parents)

Organisation

It should be clear what the implementation of CDR means for organisations (i.e., time investment, costs) (professionals)

The management of organisations should be involved to facilitate time for professionals to cooperate in CDR (professionals)

Consultation with care insurers is needed for financial coverage of CDR (parents)

Collaboration of professionals with the CDR team should be facilitated by organisations (parents)

Socio-political context

It should be clear which competencies the CDR team have (professionals)

The CDR process should be adjusted to the Dutch laws and regulations (professionals)