Intervention Review

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Interventions for supporting parents’ decisions about autopsy after stillbirth

  1. Dell Horey1,*,
  2. Vicki Flenady2,
  3. Alexander EP Heazell3,
  4. Teck Yee Khong4

Editorial Group: Cochrane Pregnancy and Childbirth Group

Published Online: 28 FEB 2013

Assessed as up-to-date: 29 OCT 2012

DOI: 10.1002/14651858.CD009932.pub2


How to Cite

Horey D, Flenady V, Heazell AEP, Khong TY. Interventions for supporting parents’ decisions about autopsy after stillbirth. Cochrane Database of Systematic Reviews 2013, Issue 2. Art. No.: CD009932. DOI: 10.1002/14651858.CD009932.pub2.

Author Information

  1. 1

    La Trobe University, Faculty of Health Sciences, Bundoora, VIC, Australia

  2. 2

    Mater Health Services, Translating Research Into Practice (TRIP) Centre - Mater Medical Research Institute, Woolloongabba, Queensland, Australia

  3. 3

    University of Manchester, Maternal and Fetal Health Research Centre, Manchester, UK

  4. 4

    Women's and Children's Hospital, SA Pathology, Adelaide, South Australia, Australia

*Dell Horey, Faculty of Health Sciences, La Trobe University, Bundoora, VIC, 3086, Australia. d.horey@latrobe.edu.au.

Publication History

  1. Publication Status: New
  2. Published Online: 28 FEB 2013

SEARCH

 
Characteristics of excluded studies [ordered by study ID]

StudyReason for exclusion

Breeze 2012Not a randomised controlled trial.

Rowland 2009Not a randomised controlled trial.

Stock 2010Not a randomised controlled trial.

 
Table 1. Website search of International Stillbirth Alliance (ISA) members by country

CountryNameDescriptionURLReference to or information about autopsy or post-mortem examinations?

ArgentinaEra en AbrilFirst non-profit organisation in Latin America that provides assistance to parents of babies who died during pregnancy, childbirth or after birth.http://www.eraenabril.orgParental rights when a baby dies include being able to order an autopsy and for information provided in easy to understand terminology (including autopsy and pathology reports).

AustraliaAustralian and New Zealand Stillbirth Alliance (ANZSA)Member-driven organisation focused on preventing stillbirth in Australia and New Zealand.http://www.stillbirthalliance.org.auExplanation of autopsy included in “Resources for parents”.

AustraliaAustralian College of Midwives (ACM)National, not-for-profit organisation that serves as the peak professional body for midwives in Australia.http://www.midwives.org.auNone found.

AustraliaBears Of HopeOffers support and guidance for parents who experience the loss of their baby during pregnancy, birth or infancy through the donation of a teddy bear.http://www.bearsofhope.org.auStillbirth information includes explanation of autopsy and the associated processes.

AustraliaPerinatal Society of Australia and New Zealand (PSANZ)Multidisciplinary society dedicated to improving the health and long-term outcomes for mothers and their babies.http://www.psanz.com.au/None found.

AustraliaPregnancy Loss AustraliaBear-giving program and counselling services to support parents and families who have experienced any gestation loss of a baby.http://www.teddyloveclub.org.au/Mentioned in several parent stories of their pregnancy loss experience.

AustraliaRoyal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG)Medical College.http://www.ranzcog.edu.au/Found in news reports. Media Wrap Up includes link to national radio program on topic of stillbirth autopsy.

AustraliaRoyal Australian College of General Practitioners (RACGP)Australia’s largest professional general practice organisation and represents urban and rural general practitioners.http://www.racgp.org.au/Only in reference to SIDS.

AustraliaSANDS AustraliaNational charity organisation of state-based parent-managed, not-for-profit associations that aim to facilitate healthy grieving following the death of a baby through miscarriage, stillbirth, newborn death or termination.http://www.sands.org.au/FAQ include “I had a stillbirth and the hospital did an autopsy – is that normal?”.

AustraliaSIDS and Kids AustraliaNational not-for-profit organisation with history of health promotion, bereavement support, advocacy and research.http://www.sidsandkids.org/Brief explanation of autopsy/post-mortem included in information about stillbirth and miscarriage.

Organisation also hosted national pathology workshop about SIDS and autopsy.

AustraliaStillbirth FoundationFunds and encourages research into stillbirth and works to increase public awareness about stillbirth.http://www.stillbirthfoundation.org.au/Information about funded autopsy studies included under Research.

CanadaParentCareSupport group of parents who have suffered the loss of a baby through miscarriage, ectopic pregnancy, stillbirth or early infant death up to 28 days.http://www.parent-care.ca/None found.

CanadaWalk to rememberAnnual event for families who have lost a baby by miscarriage, stillbirth, early infant death or SIDS to celebrate and honour these babies.http://www.walktoremember.ca/None found.

DenmarkLandsforgeningen SpadbarnsfondenNon-profit organisation that aims to support those who have lost children, and work to prevent the further infant deaths.http://www.spadbarnsfonden.se/None found.

InternationalInternational Society for the Study and Prevention of Perinatal and Infant Death (ISPID)Not-for-profit organisation with a mission to advance research and increase knowledge in areas of perinatal and infant health and mortality. Also aims to serve as a centralised resource for sharing of information worldwide and connecting organisations and individuals.http://www.ispid.org/FAQ on stillbirth includes “Are autopsies important? If so, why?”.

 

InternationalInternational Stillbirth Alliance (ISA)Non-profit coalition of organisations dedicated to understanding the causes and prevention of stillbirth.http://www.stillbirthalliance.org/index.phpNone found.

IrelandA Little Lifetime FoundationVoluntary organisation found by group of bereaved parents whose babies died before or at birth (stillbirth) or sometime after birth (neonatal death).http://www.alittlelifetimefoundation.ie/None found.

ItalyCiao Lapo OnlusScientific and welfare association comprised of physicians, psychologists, midwives and parents who have dealt with the experience of illness and loss in pregnancy or after birth that offers psychological and psychosocial support to parents and families who are experiencing or have experienced high-risk pregnancies, diagnosis of fetal pathology of their children, and the loss of a child during pregnancy.http://www.ciaolapo.it/Assumed – advice includes “any photo taken before the autopsy”.

JapanJapan Academy of Midwifery (CAM)To advance the science of midwifery to raise the standard of health care provided by professional midwives to mothers, babies and families, and women in every stage of life.http://square.umin.ac.jp/jam/english.htmlNone found.

JapanLuke’s Group for Parents of AngelsSupport group for parents who have lost a child to neonatal death, stillbirth or abortion.http://plaza.umin.ac.jp/artemis/rcdnp/tenshi/index.htmlNone found.

JapanSIDS Family Association JapanVoluntary organisation to support parents who experience SIDS.http://www.sids.gr.jp/None found.

JapanWith Angels in the Sky http://www.h4.dion.ne.jp/˜wais.kt/Unclear.

New ZealandSIDS New ZealandNational organisation established to provide services for families and communities who have had children of any age die suddenly and/or unexpectedly of any cause including SIDS.http://www.sids.org.nz/None found.

NorwayNorwegian SIDS and Stillbirth Society (Landsforeningen uventet barnedød)National association to support parents who have lost an infant unexpectedly including those who died in pregnancy.http://www.lub.no/None found.

ParaguayJuan PablitoFoundation to improve the care of babies with trisomy 13 and trisomy 18 and other premature babies and their families and to raise awareness about the death of babies during pregnancy, labour and after birth.http://www.juanpablito.com/Parental rights when a baby dies include being able to order an autopsy and for information provided in easy to understand terminology (including autopsy and pathology reports)

SpainU MAMANITAParent organisation to support and inform mothers and fathers in Spain who experience infant death or stillbirth.http://www.umamanita.esUnder “Practical things but important” there is information about decisions and processes around autopsy.

SwedenSpädbarnsfondenNon-profit organisation that aims to support those who have lost children, and work to prevent the further infant deaths.http://www.spadbarnsfonden.se/Unclear.

The NetherlandsThe Fetal Medicine Foundation NetherlandsOrganisation for health professionals that strives for standardisation of research and education during pregnancy by offeringhttp://www.fetalmedicine.nl/None found.

UKNational Perinatal Epidemiology Unit (NPEU)Multidisciplinary research team dedicated to improving the care provided to women and their families during pregnancy, childbirth and the postpartum period, as well as the care provided to the newborn.https://www.npeu.ox.ac.uk/None found.

UKRoyal College of Obstetricians and GyaecologistsMedical College.http://www.rcog.org.uk/N (only related to maternal death).

UKSands UKNational charity established by bereaved parents that aims to support anyone affected by the death of a baby, work with health professionals to improve care and promote research and changes in practice that reduce loss.http://www.uk-sands.org/None found.

USA1st BreathProvides education, advocacy, and public awareness of stillbirth in addition to assisting families and medical professionals dealing with the death of a baby.http://www.1stbreath.orgIncludes articles that refer to autopsy.

USAA Place To RememberPublishes and provides uplifting support materials and resources for those who have been touched by a crisis in pregnancy or the death of a baby.http://www.aplacetoremember.comNone found.

USAAngel Names AssociationNonprofit charitable organisation dedicated to assisting families of stillborn children through programs designed to provide financial assistance for end-of-life expenses and counselling services, and funding for stillbirth research.http://www.angelnames.org/None found.

USAFirst CandleNational non-profit health organisation uniting parents, caregivers and researchers nationwide with government, business and community service groups to advance infant health and survival. http://www.firstcandle.org/Included in parent story about SIDS.

USAGlobal Alliance to Prevent Prematurity and Stillbirth (gapps)Focus on achievement of the Global Action Agenda and United Nations Millennium Development Goals 4 and 5. Work to strengthen collaborations in maternal, newborn and child health, and develop a unified, global focus on preterm birth and stillbirth.http://gapps.org/None found.

USAHygeia 2012Hygeia 2012 is founded on principals derived from a personal philosophy to always maintain, respect and teach the tenets that the trust inherent in the doctor-patient relationship.http://drberman.org/abouthygeia2012.htmNone found.

USANeo-FightNon-profit organisation dedicated to helping families experiencing a perinatal crisis which began as a parent support group.http://www.neofight.org/None found.

USAPre-VentNon-profit charitable organisation comprised of trained healthcare providers and administrators that advances the education of skilled birth attendants and community health workers and promotes preventive health measures among the vulnerable and poor populations.http://www.pre-vent.orgNone found.

USAStar Legacy FoundationNon-profit organisation that raises funds to support stillbirth research and education.http://www.starlegacyfoundation.orgNone found.

 SIDS: Sudden Infant Death Syndrome