Onderzoek doodsoorzaak bij onverwacht overlijden kind: Ervaringen van ouders met de NODOK-procedure

OBJECTIVE: The death of a child is (one of) the most devastating life events for parents. A natural order of life is that children outlive their parents. In the Netherlands, parents can choose for investigation into the cause of death using the standardized Postmortem Evaluation of Sudden Unexplained Death in Youth (PESUDY) procedure. Parents' experiences with this procedure have not been well investigated. DESIGN AND METHODS: A qualitative semi structured interview study focusing on the experiences and expectations of parents during a postmortem PESUDY-procedure after the sudden death of their child. RESULTS: A total of 9 interviews were conducted, in which 16 parents were interviewed. The deceased children were between 0 and 17 years old. Seven of the nine deceased children had been diagnosed with a cause of death after completion of the PESUDY-procedure. Various themes were identified in the interviews such as, core values in decision-making, guilt and grief. Advice for improvement of the procedure were given by the parents. CONCLUSION: Parents generally experience the PESUDY-procedure as positive. Participation is experienced as voluntary, designed for parents. The interaction between medical professionals and parents is an important factor for parental satisfaction with the procedure. Wishes regarding communication were very diverse, which makes individual coordination important. In addition, participation in the PESUDY-procedure can reduce feelings of guilt and provide some comfort, regardless of the medical outcomes of the procedure.