ArticleArchives of disease in childhood. Fetal and neonatal edition2004
Perinatal pathology in the context of a clinical trial: attitudes of bereaved parents.
Article in Archives of disease in childhood. Fetal and neonatal edition, 2004. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 4 of them syntheses that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
13 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Humanitarian forensic medicine: a systematic review.International journal of legal medicine · 2025Pooled it
- Factors affecting uptake of postmortem examination in the prenatal, perinatal and paediatric setting.BJOG : an international journal of obstetrics and gynaecology · 2018Pooled it
- Pooled it
- What do bereaved parents want from professionals after the sudden death of their child: a systematic review of the literature.BMC pediatrics · 2014Pooled it
- "The communication and support from the health professional is incredibly important": A qualitative study exploring the processes and practices that support parental decision-making about postmortem examination.Prenatal diagnosis · 2019Article
- Decision influences and aftermath: parents, stillbirth and autopsy.Health expectations : an international journal of public participation in health care and health policy · 2014Article
- What do parents want to know when considering autopsy for their child with cancer?Journal of pediatric hematology/oncology · 2014Article
- The use of in utero MRI to supplement ultrasound in the foetus at high risk of developmental brain or spine abnormality.The British journal of radiology · 2012Article
- Parents' views of involvement in concurrent research with their neonates.Journal of empirical research on human research ethics : JERHRE · 2010Article
- The BRACELET Study: surveys of mortality in UK neonatal and paediatric intensive care trials.Trials · 2010Article
- What factors are important to parents making decisions about neonatal research?Archives of disease in childhood. Fetal and neonatal edition · 2005Article
- Perinatal pathology in the context of a clinical trial: a review of the literature.Archives of disease in childhood. Fetal and neonatal edition · 2004Review
- Perinatal pathology in the context of a clinical trial: attitudes of neonatologists and pathologists.Archives of disease in childhood. Fetal and neonatal edition · 2004Article
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Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundInterviews with neonatologists in a related study had revealed a degree of discomfort with approaching bereaved parents for postmortem examinations (PMs) and a widespread concern that parents should not be further distressed or feel under pressure to consent.
objectiveTo report the attitudes of bereaved parents to trial related perinatal PMs, in the light of declining perinatal PM rates and poor levels of participation in pathology studies.
methodsA qualitative study was carried out, using semistructured interviews. The study involved 11 interviews with 18 bereaved parents from five UK neonatal units. The parents had consented to the enrolment of their baby in one of two neonatal trials.
resultsThe data provide support for the careful approach described by neonatologists in a related study, but also suggest that it may be possible to approach more parents without undermining their wellbeing. The interviews show the variety of reactions to PMs that one would expect, from parents who were clear that they did not want a PM to others who felt that they needed the information from the examination. Between these extremes were parents who were initially discomforted by the idea but who then made the decision to go ahead. Parents who elected to have a PM did so for their own needs, or to contribute to a trial, or for both reasons. The fact that the subject was raised was generally not seen as inappropriate, and none stated that they felt that they were actually pressured into making their decision. The data also suggest that for some parents the degree of caution and selectivity exercised by the neonatologists may not be entirely appropriate. In two cases, consent for the PM was driven by a sense of making an altruistic contribution to research, and, in another two, altruism was expressed in the context of their own desire for information from a PM.
conclusionsIt is important to determine whether trial related pathology studies are considered by professionals and lay people to be worth while and feasible. If there is support for such studies, the challenge is to develop the means to approach more parents in the most sensitive way.
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