SUMMARY IN ENGLISH

Background

In Norway, between 35 and 40 children aged 0–4 years die each year suddenly and unexpectedly in their home. Of these, 10 to 15 are diagnosed with SIDS, i.e. child deaths where no obvious cause of death is found after autopsy and investigation of the death scene (DSI) are conducted. DSI is voluntary for parents and involve a home visit by a team consisting of a former police investigator and the forensic pathologist who has conducted the autopsy. This review of the death ordinarily happens within 48 hour after the death. When the DSI was introduced in Norway in 2010, the Ministry of Health and Care Services decided that the practice should be evaluated, especially parents’ experiences of participating in a DSI. The National Institute of Public Health was assigned the task of administering the DSI, and responsibility for the evaluation was given to the Norwegian centre for violence and traumatic stress studies (NKVTS). The data collection took place between 2013–2016, and the project ended in 2018 with this report. The following research questions have been explored in the report:

Part I: What are parents’ experiences of participating in a DSI? This includes:

• How they react to being asked to participate in a DSI
• How they experience the DSI
• How and when they are informed about the results when the final autopsy report is finished.

  Part II: Participation and legal rights

• What are the consequences for parents who do not participate in a DSI?
• Are the participation rate high enough to defend DSI as a voluntary practice (so that criminal acts are discovered)?

• Part III: Systematization of findings and prevention
• To what extent does DSI provide information beyond what is gained through medical history and autopsy?
• How is this knowledge systematized and used to prevent child deaths?

Methods

Part 1: 31 out of 42 completed DSI (74%) have been evaluated. In total n= 59/84 parents (response rate=70%) have been in-depth interviewed face-to-face approximately 6 weeks after the death (T1). Furthermore, 42 of the parents were re-interviewed by telephone 12 months later (T2). In addition, parents have filled out questionnaires related to their experience of participating in a DSI and their current mental health.

Part II: Four parents who did not participate in the DSI have been in-depth interviewed face-to-face 3-30 months after losing a child. In addition, a couple who first refused to participate, but accepted to take part in the DSI a few days later, was included in the analyses.

Part III: Three professionals, two female and one male with in-depth knowledge of DSI in Norway, have been interviewed. In addition, various reports have been reviewed to elucidate the question whether the DSI can contribute with information beyond what is gained through the autopsy, and how this information can be implemented to prevent child deaths.

Part I: What are parents’ experiences of participating in a DSI?

Results

• It is limited what parents register when asked at the hospital about participating in a DSI, but over ¾ understood that participation was voluntary.
• Most parents consented because they needed to know why their child had died.
• Over 90% of the parents were satisfied with the way the DSI was conducted.
• Around 2/3 said that the DSI had been helpful in their grief.
• Around half of the parents reported that participation in the DSI had reduced self-blame and ruminations.
• The key factors for the perceived benefit were meeting with caring and competent professionals who provided crucial information early after the Death.
• Meeting with the forensic pathologist who conducted the autopsy gave parents more confidence in the information they received.
• Almost half of the parents felt that the reconstruction was distressing.
• Parents who found their child dead were more at risk for reliving the death during the reconstruction.
• Some complained that they received too detailed information about how the autopsy was conducted.
• There were no reports of lasting harm, and none regretted that they had participated.
• Over half of the parents had to wait longer than expected before they received feedback on the final autopsy report.
• One-third of the parents received feedback from the police. This was for many a frustrating experience, led to extra concern, and left the parents with unanswered questions.
• One-third of the parents were given feedback over the phone, which was a negative experience.
• Some parents experienced that the pediatrician/nurse at the hospital did not inform them that bedsharing with their child had contributed to the death. They first became aware of this when they insisted on reading the autopsy report themselves.
• Some wished that the DSI-team could have given them feedback on the final autopsy report.

   

   

  Implications

   

• Parents should be properly prepared before the DSI and taken care of afterwards.
• Organizers of the DSI need to consider how much details they choose to give parents from the autopsy.
• Parents should be informed if the final autopsy report is delayed.
• Parents should not be informed about the autopsy report by the police.
• Parents should not be informed about the autopsy report over the phone.
• Pediatricians and nurses should practice on how to provide ‘bad news’ to parents, especially when the parents’ actions may have contributed to the death.

Part II: Participation and legal protection

Results

• About 1 in 4 parents do not participate in a DSI, but we have little knowledge of why.
• Interviews with four couples indicated that:
  • Some parents refuse due to lack of adequate information about what a DSI
  • Others refuse because they are overwhelmed by the loss and are tired having already been interrogated by the police.
  • Some hospital staff signal to the parents that a DSI is of limited value.
• Not participating in the DSI left many parents with unanswered questions and some regretted saying no.
• Whether the participation rate is high enough to defend DSI as a voluntary practice is not possible to answer since we have limited knowledge whether criminal acts have been discovered (not the aim of DSI).
• Theoretically criminal acts can be missed when the police do not investigate the death scene and parents refuse to take part in DSI.
• Parents are divided in their opinion whether DSI should be mandatory or not.

Implications

• Hospital staff must regularly receive training on how to ask parents about participating in a DSI (see Appendix 1 for an example).
• Those who first refuse to take part in a DSI may benefit from being asked again later on.
• A unique study must be designed in order to see if criminal acts are missed.

Part III: Systematization of findings and prevention

Results

• Based on reports and interviews with professionals who are working with DSI in Norway we believe that DSI contribute with important knowledge regarding death mode and the cause of death.
• One obvious reason for maintaining the DSI is that investigating the death scene is a prerequisite for the diagnosis of SIDS.
• DSI seems to provide important knowledge about risk factors, especially related to the children’s sleeping situation.
• Prone position remains the most important risk factor, but there is also an increased risk of SIDS when parents are bedsharing with the youngest infants, especially in combination with parental smoking and alcohol drinking.
• Other important risk factors are overheating and the use of soft bedding, including blankets, pillows, sheep skin etc. in the infants sleep environment.
• These are so-called modifiable risk factors, i.e. risk factors that may be prevented through adequate measures.
• The knowledge that is gathered from the DSI is not systematically registered.
• Close cooperation between researchers and voluntary organizations have led to information and brochures to parents and health care professional on safe sleeping practices.

Implications

• A national register with findings from the DSI should be established.
• Information and other preventive measures directed towards parents at- risk should be disseminated.