Necropsies in African children: consent dilemmas for parents and guardians

BACKGROUND: Necropsy examination provides a good index of the accuracy of clinical diagnosis and the quality of treatment, but its use in sub-Saharan Africa is limited. AIMS: To identify the main reasons for parents'/guardians' refusal of consent for necropsy and to explore the issues affecting their decision. METHODS: A sequential necropsy study of Zambian children between 2 months and 15 years dying of respiratory disease. When the parent/guardian refused permission for necropsy, the main reason given was recorded, after encouragement to express their specific concerns in their own words. RESULTS: Parents/guardians of 891 of 1181 children (75.4%) refused to give permission, and 290 (24.6%) consented. Of those who refused, 43% did so on the grounds that it would be a "waste of time," as the diagnosis should have been made in life and the findings would now be of no benefit to them. More than one quarter of those who refused did so because a death certificate had already been issued and arrangements to transport the body had been made and could not be delayed. Traditional beliefs that ancestral spirits forbade the mutilation of dead bodies were cited by 77 (8.6%). Other reasons included the child not being their own or that they must seek permission from other family members who were not available (6%). Religious beliefs were not a major cause of refusal. CONCLUSIONS: It is possible to achieve a rate of necropsy consent sufficient to undertake valuable clinical pathology studies on children in sub-Saharan Africa. The wide range of reasons cited for refusal points to the diverse and complex interaction of social and cultural factors affecting attitudes to necropsy examination. Medical staff need training and support to improve the uptake of clinical pathology services.