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Necropsies in African children: consent dilemmas for parents and guardians

Identifieur interne : 004403 ( Istex/Corpus ); précédent : 004402; suivant : 004404

Necropsies in African children: consent dilemmas for parents and guardians

Auteurs : K. Lishimpi ; C. Chintu ; S. Lucas ; V. Mudenda ; J. Kaluwaji ; A. Story ; D. Maswahu ; G. Bhat ; A J Nunn ; A. Zumla

Source :

RBID : ISTEX:D0C8B2B5F4ED1286A13527D4861256ABE2C94524

English descriptors

Abstract

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. Key messages Worldwide necropsy rates are declining in both adults and children Even in conditions where trained counsellors and rapid access to necropsy examination exist, rates of consent remain low In Zambia, necropsy examination of children is most commonly perceived by parents/guardians as a waste of time and an inconvenience to arrangements for burial

Url:
DOI: 10.1136/adc.84.6.463

Links to Exploration step

ISTEX:D0C8B2B5F4ED1286A13527D4861256ABE2C94524

Le document en format XML

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<p>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. Key messages Worldwide necropsy rates are declining in both adults and children Even in conditions where trained counsellors and rapid access to necropsy examination exist, rates of consent remain low In Zambia, necropsy examination of children is most commonly perceived by parents/guardians as a waste of time and an inconvenience to arrangements for burial</p>
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The UNZA–UCLMS (University of Zambia–University College London Medical School Tuberculosis/HIV Research and Training Project), University of Zambia School of Medicine, Lusaka, Zambia, </target>
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Centre for Infectious Diseases and International Health, Department of Medicine, Royal Free and University College London Medical School, London, UK, </target>
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Department of Pathology, UMDS of St Thomas's, King's, and Guys Hospital Medical Schools, London, UK, </target>
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MRC Clinical Trials Unit, London, UK</target>
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<corresp>Professor A Zumla, Centre for Infectious Diseases and International Health, UCL Windeyer Institute of Medical Sciences Room G41, 46 Cleveland Street, London W1P 4JF, UK email:
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<p>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.</p>
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<p>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.</p>
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<p>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.</p>
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<abstract>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. Key messages Worldwide necropsy rates are declining in both adults and children Even in conditions where trained counsellors and rapid access to necropsy examination exist, rates of consent remain low In Zambia, necropsy examination of children is most commonly perceived by parents/guardians as a waste of time and an inconvenience to arrangements for burial</abstract>
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