Decisions to consent for autopsy after stillbirth: Aboriginal and Torres Strait Islander women's experiences

Kilcullen, Meegan; Kandasamy, Yogavijayan; Watson, David; Cadet‐James, Yvonne

doi:10.1111/ajo.13052

Cited by 6 publications

(4 citation statements)

References 8 publications

(37 reference statements)

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“…More recently, studies have found evidence of significant health economic effects associated with these events (42,51,87). Affected families are motivated to obtain an explanation for the fetal or perinatal death, at least in part, to know how likely it is to happen in future pregnancies (27).…”

Section: Risk To Mothermentioning

confidence: 99%

Genomically Aided Diagnosis of Severe Developmental Disorders

FitzPatrick

Firth

2020

Annu. Rev. Genom. Hum. Genet.

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Our ability to make accurate and specific genetic diagnoses in individuals with severe developmental disorders has been transformed by data derived from genomic sequencing technologies. These data reveal both the patterns and rates of different mutational mechanisms and identify regions of the human genome with fewer mutations than would be expected. In outbred populations, the most common identifiable cause of severe developmental disorders is de novo mutation affecting the coding region in one of approximately 500 different genes, almost universally showing constraint. Simply combining the location of a de novo genomic event with its predicted consequence on the gene product gives significant diagnostic power. Our knowledge of the diversity of phenotypic consequences associated with comparable diagnostic genotypes at each locus is improving. Computationally useful phenotype data will improve diagnostic interpretation of ultrarare genetic variants and, in the long run, indicate which specific embryonic processes have been perturbed. Expected final online publication date for the Annual Review of Genomics and Human Genetics, Volume 21 is August 31, 2020. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

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Section: Risk To Mothermentioning

confidence: 99%

Genomically Aided Diagnosis of Severe Developmental Disorders

FitzPatrick

Firth

2020

Annu. Rev. Genom. Hum. Genet.

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“…While autopsy is the gold standard for understanding the cause of stillbirth, parents often manifest discomfort and concerns in its acceptance; parents feel shocked, distressed, unprepared and overwhelmed by their grief [10,11]. Therefore, they may be not able to provide their consent for fetal examination.…”

Section: Introductionmentioning

confidence: 99%

“…Caregivers need to be prepared for the difficulty of speaking about autopsy with parents [10]. Parents feel afraid and distressed about the procedure [11] and they have wrong concerns about disfigurement and dismemberment [10,11,14]. Unfortunately, this barrier against fetal autopsy is sometimes related to caregivers' disinformation and misconceptions.…”

Section: Introductionmentioning

confidence: 99%

Fetal Autopsy: Improving Clinicians’ Knowledge to Increase Parents’ Acceptance. A Prospective Questionnaire-Based Study

Avagliano¹,

Martini²,

Antuono³

et al. 2022

Clin. Exp. Obstet. Gynecol.

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Background: Knowing the cause of stillbirth is of paramount importance for bereaved parents and fetal autopsy is one of the key investigations aimed at providing explanation about the fetal death. However, parents often manifest concerns in autopsy acceptance. Barriers against fetal autopsy can be related to caregivers' disinformation and misconceptions. Our aim was to investigate the knowledge about fetal autopsy in a third level Italian University care Center. Methods: We investigated the knowledge of caregivers (n = 60) about fetal autopsy collecting data from an on-line anonymous questionnaire. We investigated about dismemberment, disfigurement and whether the parents can see their baby after the autopsy. Results: We obtained 34/60 (56.7%) answers, highlighting the discomfort of health care providers about addressing this issue. Only half of the responders knows that the baby will not be dismembered during the autopsy and only one third of caregivers knows that the baby will not be disfigured after the autopsy and parents can see their baby after the post-mortem investigation if they wish. More than 30% of health care providers reported that they did not know technical details about the autopsy procedures, and they did not know answers to some common questions about autopsy such as whether the fetus would be disfigured or dismembers and whether the remains could be viewed following completion of the autopsy. Conclusions: To overcome some barriers about fetal autopsy, it is of paramount importance that both caregivers and parents are aware that the baby will not be dismembered, and the face, hands, feet, and limbs of the baby are untouched during the full autopsy investigation. Deleting caregivers' misconceptions is a crucial point for improving parents' autopsy acceptance.

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“…There is little accurate data across states to inform care for these women and families, and very few autopsies are conducted to enhance understanding of causation of stillbirth or potential risk factors. 12 In the current pilot study, we sought to identify Aboriginal and Torres Strait Islander stillbirth rates, risk factors and causes in the regional, rural and remote catchment of the TUH.…”

Section: Introductionmentioning

confidence: 99%

Stillbirth risks and rates for Aboriginal and Torres Strait Islander women and their babies in North Queensland

Kilcullen

Kandasamy

Watson

et al. 2021

Aust NZ J Obst Gynaeco

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Background:The stillbirth rate for Australian Aboriginal and Torres Strait Islander infants remains higher than non-Indigenous rates. Risks for stillbirth include maternal factors such as ethnicity, age, geographic location, and physical health. Fetal risk factors include gestational age, birthweight and congenital anomalies. The total stillbirth rate for all babies born at the Townsville University Hospital during the study period was 11 per 1000 births. Aims:To identify Aboriginal and Torres Strait Islander stillbirth rates, risk factors and causes in North Queensland. Materials and Methods: A retrospective chart audit was conducted to identify Indigenous women who had experienced stillbirth in the Townsville University Hospital between January 2005 and December 2014. Results: Thirty-two charts were available for audit. The stillbirth rate for non-Indigenous infants was 10.3 per 1000 births. The stillbirth rate for Indigenous infants was 11.7 per 1000 births. Almost half of the women lived in rural, remote or very remote areas. Maternal risk factors included poorer physical health, such as obesity, diabetes, hypertension, and smoking, fertility issues and lack of antenatal care. Fetal risk factors included congenital anomalies, including cardiac and skeletal abnormalities, placental disorders, and preterm birth.Conclusions: Stillbirth risk remains higher for Aboriginal and Torres Strait Islander women and their babies. Supporting women to enhance their health is paramount, particularly during pregnancy. Further, increasing awareness of stillbirth risk factors through education for both women and healthcare professionals will support culturally responsive care for women and their families to mitigate stillbirth risk and enhance pregnancy outcomes in non-urban Queensland.

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Decisions to consent for autopsy after stillbirth: Aboriginal and Torres Strait Islander women's experiences

Cited by 6 publications

References 8 publications

Genomically Aided Diagnosis of Severe Developmental Disorders

Genomically Aided Diagnosis of Severe Developmental Disorders

Fetal Autopsy: Improving Clinicians’ Knowledge to Increase Parents’ Acceptance. A Prospective Questionnaire-Based Study

Stillbirth risks and rates for Aboriginal and Torres Strait Islander women and their babies in North Queensland

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