Background: To improve palliative care in pediatric oncology and to mitigate the long-term psychological effects of losing a child to cancer, the parents are an obvious source of information. However, approaching parents can be questioned from an ethical standpoint because of the risk of inflicting unreasonable harm. We investigated how parents perceived a questionnaire on care and other circumstances regarding their child’s death due to cancer.
Methods: In 2001, we attempted to contact all parents in Sweden who had lost a child to cancer between 1992 and 1997. Parents were also asked to complete a separate form concerning their perception of the inquiry, the results of which are now presented.
Findings: The participation rate among eligible parents was 432/574. Among these 432 parents, 72 percent reported no negative effect of the questionnaire, while the remaining 28 percent were negatively affected, to a varying degree. Among the 35 parents, who were more than a little negatively affected, all 34 responding, found the study valuable anyway. Altogether, 423 parents (98 percent) considered the investigation to be valuable. The majority (67 percent) reported that they had been positively affected by completing the questionnaire. A pilot study (n=17) provided similar results to those of the main survey.
Interpretation: An inquiry on a severe traumatic experience can be perceived positively by the majority of those afflicted. The results of pilot studies in such populations may facilitate the decision making of Ethics Committees. Nonetheless, it remains unclear to what extent quantifiable data can be translated to ethical guidelines.