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. 2013 Feb 28;2013(2):CD009932.
doi: 10.1002/14651858.CD009932.pub2.

Interventions for supporting parents' decisions about autopsy after stillbirth

Dell Horey  1 , Vicki Flenady, Alexander E P Heazell, Teck Yee Khong
Affiliations

Interventions for supporting parents' decisions about autopsy after stillbirth

Dell Horey et al. Cochrane Database Syst Rev. .

Abstract

Background: Stillbirth remains one of the least understood areas of infant death and accurate data on the causes of stillbirth are the cornerstone of stillbirth prevention. An autopsy examination remains the gold standard post-mortem investigation for stillbirth. However, decisions about post-mortem investigations, particularly autopsy are difficult. The purpose of this review is to examine the effectiveness of methods to help parents who have experienced a stillbirth decide whether to have post-mortem investigations, including whether to have an autopsy performed.

Objectives: The primary objectives were a) to examine the effectiveness of interventions to support parents' decisions about autopsy consent after a stillbirth on outcomes for parents, and b) to determine autopsy rates. Secondary objectives were to identify issues related to the acceptability of any interventions to parents and the feasibility of their implementation.

Search methods: We searched the Cochrane Pregnancy and Childbirth Group's Trials Register (29 October 2012), the Cochrane Central Register of Controlled Trials (CENTRAL) (The Cochrane Library 2012, Issue 10), MEDLINE (1966 to 24 July 2012) and EMBASE (1980 to 24 July 2012), Current Controlled Trials metaRegister (mRCT) (18 September 2012) and the WHO International Clinical Trials Registry Platform Search Portal (ICTRP) (18 September 2012). We also searched the websites of the Stillbirth and Neonatal Death Charity (SANDS) and International Stillbirth Alliance (ISA) (18 September 2012) and then subsequently searched the websites of all the ISA member organisations.

Selection criteria: Randomised controlled trials (RCTs) of interventions designed specifically to support parents who have experienced a stillbirth make decisions about their options for post-mortem investigations including all investigations after stillbirth compared with usual care.

Data collection and analysis: Two review authors independently screened citations against the selection criteria.

Main results: No studies meeting the review inclusion criteria were identified. A search of 40 websites associated with supporting parents who experience stillbirth also found little reference to, or information about autopsy or other post-mortem examinations.

Authors' conclusions: Support for parents making decisions about autopsy or other post-mortem examinations after stillbirth must rely on the ad hoc knowledge and experience of those involved at the time.

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Conflict of interest statement

Dr Alexander Heazell has received a research grant from Sands (UK) to investigate parents' and professionals' views, knowledge and experience of care and counselling for investigations after stillbirth.

Figures

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1
Study flow diagram.
See this image and copyright information in PMC

Update of

  • doi: 10.1002/14651858.CD009932

References

References to studies excluded from this review

Breeze 2012 {published data only}
    1. Breeze AC, Statham H, Hackett GA, Jessop FA, Lees CC. Interventions to improve rates of post‐mortem examination after stillbirth. Birth 2012;39(1):57‐64. - PubMed
Rowland 2009 {published data only}
    1. Rowland A, Goodnight WH. Fetal loss: addressing the evaluation and supporting the emotional needs of parents. Journal of Midwifery & Women's Health 2009;54(3):241‐8. - PubMed
Stock 2010 {published data only}
    1. Stock SJ, Goldsmith L, Evans MJ, Laing IA. Interventions to improve rates of post‐mortem examination after stillbirth. European Journal of Obstetrics, Gynecology, & Reproductive Biology 2010;153(2):148‐50. - PubMed

Additional references

Adappa 2007
    1. Adappa R, Paranjothy S, Roberts Z, Cartlidge PH. Perinatal and infant autopsy. Archives of Disease in Childhood Fetal and Neonatal Edition 2007;92:F49‐F50. - PMC - PubMed
AHMAC 2002
    1. AHMAC Subcommittee on Autopsy Practice. The National Code of Ethical Autopsy Practice. Adelaide: South Australia Department of Human Services, 5 April 2002.
Bekker 1999
    1. Bekker H, Thornton J, Airey M, Connelly JB, Hewison J, Robinson MB, et al. Informed decision‐making: an annotated bibliography and systematic review. Health Technology Assessment 1999;3(1):1‐156. - PubMed
Bekker 2010
    1. Bekker HL. The loss of reason in patient decision aid research: Do checklists damage the quality of informed choice interventions?. Patient Education and Counseling 2010;78(3):357‐64. - PubMed
Bhutta 2011
    1. Bhutta ZA, Yakoob MY, Lawn JE, Rizvi A, Friberg IK, Weissman E, et al. Stillbirths: what difference can we make and at what cost?. Lancet 2011;377(9776):1523‐38. [DOI: 10.1016/S0140-6736(10)62269-6] - DOI - PubMed
Brabin 1995
    1. Brabin PJ, Berah EF. Dredging up past traumas: harmful or helpful?. Psychiatry, Psychology and Law 1995;2(2):165‐71.
Brodlie 2002
    1. Brodlie M, Laing IA, Keeling JW, McKenzie KJ. Ten years of neonatal autopsies in tertiary referral centre: retrospective study. BMJ 2002;324(7340):761‐3. - PMC - PubMed
Cacciatore 2007
    1. Cacciatore J, Bushfield S. Stillbirth: the mother's experience and implications for improving care. Journal of Social Work in End‐Of‐Life & Palliative Care 2007;3(3):59‐79. - PubMed
Cacciatore 2009
    1. Cacciatore J. The silent birth: a feminist perspective. Social Work 2009;54(1):91‐5. - PubMed
Cartlidge 1995
    1. Cartlidge PH, Dawson AT, Stewart JH, Vujanic GM. Value and quality of perinatal and infant postmortem examinations: cohort analysis of 400 consecutive deaths. BMJ 1995;310(6973):155‐8. - PMC - PubMed
Davis 1996
    1. Davis GJ, Peterson, BR. Dilemmas and solutions for the pathologist and clinician encountering religious Views of the autopsy. Southern Medical Journal 1996;89(11):1041‐4. - PubMed
Dickinson 2011
    1. Dickinson JE. The continuing dilemma of stillbirth. Australian and New Zealand Journal of Obstetrics and Gynaecology 2011;51:1‐2. - PubMed
Durand 2008
    1. Durand MA, Stiel M, Boivin J, Elwyn G. Where is the theory? Evaluating the theoretical frameworks described in decision support technologies. Patient Education and Counseling 2008;71(1):125‐35. - PubMed
Egger 1997
    1. Egger M, Davey Smith G, Schneider M, Minder C. Bias in meta‐analysis detected by a simple, graphical test. BMJ 1997;315(7109):629‐34. - PMC - PubMed
Elwyn 2009
    1. Elwyn G, Frosch D, Rollnick S. Dual equipoise shared decision making: definitions for decision and behaviour support interventions. Implementation Science 2009;4:75. [DOI: 10.1186/1748-5908-4-75] - DOI - PMC - PubMed
Elwyn 2010
    1. Elwyn G, Miron‐Shatz T. Deliberation before determination: the definition and evaluation of good decision making. Health Expectations 2010;13(2):139‐47. - PMC - PubMed
Elwyn 2011
    1. Elwyn G, Stiel M, Durand MA, Boivin J. The design of patient decision support interventions: addressing the theory‐practice gap. Journal of Evaluation in Clinical Practice 2011;17(4):565‐74. [DOI: 10.1111/j.1365-2753.2010.01517.x] - DOI - PubMed
Flenady 2009
    1. Flenady V, Silver RM, Incerpi M, Fretts RC, Pattinson R, Jaap Erwich J, et al. Essential diagnostic workup of stillbirths. In: Facchinetti F, et al. editor(s). Stillbirth: Understanding and Management. London: Informa Healthcare, 2009.
Flenady 2011a
    1. Flenady V, Middleton P, Smith GC, Duke W, Erwich JJ, Khong TY, et al. Stillbirth: the way forward in high‐income countries. Lancet 2011;377(9778):1703‐17. [DOI: 10.1016/S0140-6736(11)60064-0] - DOI - PubMed
Flenady 2011b
    1. Flenady V, Koopmans L, Middleton P, Frøen JF, Smith GC, Gibbons K, et al. Major risk factors for stillbirth in high‐income countries: a systematic review and meta‐analysis. Lancet 2011;377(9774):1331‐40. - PubMed
Frøen 2011
    1. Frøen FJ, Cacciatore J, McClure EM, Kuti O, Jokhio AH, Islam M, et al. Stillbirths: why they matter. Lancet 2011;377(9774):1353‐66. [DOI: 10.1016/S0140-6736(10)62232-5] - DOI - PubMed
Gold 2007
    1. Gold K. Navigating care after a baby dies: a systematic review of parent experiences with health providers care after a baby dies. Journal of Perinatology 2007;27(4):230‐7. - PubMed
Goldenberg 2011
    1. Goldenberg RL, McClure EM, Bhutta ZA, Belizan JM, Reddy UM, Rubens CE, et al. Stillbirths: the vision for 2020. Lancet 2011;377(9779):1798‐805. [DOI: 10.1016/S0140-6736(10)62235-0] - DOI - PubMed
Gordijin 2002
    1. Gordijn SJ, Erwich JJ, Khong TY. Value of the perinatal autopsy: critique. Pediatric and Developmental Pathology 2002;5(5):480‐8. - PubMed
Gordijin 2007
    1. Gordijn SJ, Erwich JJHM, Khong TY. The perinatal autopsy: pertinent issues in multicultural Western Europe. European Journal of Obstetrics, Gynecology, and Reproductive Biology 2007;32(1):3‐7. - PubMed
Harbord 2006
    1. Harbord RM, Egger M, Sterne JA. A modified test for small‐study effects in meta‐analyses of controlled trials with binary endpoints. Statistics in Medicine 2006;25(20):3443‐57. - PubMed
Heazell 2012
    1. Heazell A, McLaughlin, MJ, Schmidt EB, Cox P, Flenady V, Khong T, et al. A difficult conversation? The views and experiences of parents and professionals on the consent process for perinatal postmortem after stillbirth. BJOG: an international journal of obstetrics & gynaecology 2012;119(8):987–97. - PubMed
Higgins 2011
    1. Higgins JPT, Green S, editors. Cochrane Handbook for Systematic Reviews of Interventions Version 5.1.0 [updated March 2011]. The Cochrane Collaboration, 2011. Available from www.cochrane‐handbook.org. Available from www.cochrane‐handbook.org.
Hull 2007
    1. Hull MJ, Nazarian RM, Wheeler AE, Black‐Schaffer WS, Mark EJ. Resident physician opinions on autopsy importance and procurement. Human Pathology 2007;38(2):342‐50. - PubMed
Hunt 2009
    1. Hunt K, France E, Ziebland S, Field K, Wyke S. ‘My brain couldn’t move from planning a birth to planning a funeral’: A qualitative study of parents’ experiences of decisions after ending a pregnancy for fetal abnormality. International Journal of Nursing Studies 2009;46(8):1111‐21. - PubMed
Khong 1997
    1. Khong TY. Improving perinatal autopsy rates: who is counseling bereaved parents for autopsy consent?. Birth 1997;24(1):55‐7. - PubMed
Khong 2002
    1. Khong TY, Arbuckle SM. Perinatal pathology in Australia after Alder Hey. Journal of Paediatrics and Child Health 2002;38(4):409‐11. - PubMed
Khong 2006
    1. Khong TY, Tanner AR. Foetal and neonatal autopsy rates and use of tissue for research: The influence of ‘organ retention’ controversy and new consent process. Journal of Paediatrics and Child Health 2006;42(6):366‐9. [DOI: 10.1111/j.1440-1754.2006.00874.x] - DOI - PubMed
Lawn 2009
    1. Lawn JE, Kinney M, Lee ACC, Chopra M, Donnay F, Paul VK, et al. Reducing intrapartum‐related deaths and disability: Can the health system deliver?. International Journal of Gynecology and Obstetrics 2009;107:S123–S142. - PubMed
Lawn 2011
    1. Lawn JE, Blencowe H, Pattinson R, Cousens S, Kumar R, Ibiebele I, et al. Stillbirths: Where? When? Why? How to make the data count?. Lancet 2011;377(9775):1448‐63. [DOI: 10.1016/S0140-6736(10)62187-3] - DOI - PubMed
Lishimpi 2001
    1. Lishimpi K, Chintu C, Lucas S, Mudenda V, Kaluwaji J, Story A, et al. Necropsies in African children: consent dilemmas for parents and guardians. Archives of Disease in Childhood 2001;84(6):463–7. - PMC - PubMed
McHaffie 2001
    1. McHaffie HE, Fowlie PW, Hume R, Laing IA, Lloyd DJ, Lyon AJ. Consent to autopsy for neonates. Archives of Disease in Childhood Fetal and Neonatal Edition 2001;85:F4‐7. - PMC - PubMed
Michalski 2002
    1. Michalski ST, Porter J, Pauli RM. Costs and consequences of comprehensive stillbirth assessment. American Journal of Obstetrics and Gynecology 2002;186(5):1027‐34. - PubMed
O'Connor 1995
    1. O'Connor AM. Validation of a decisional conflict scale. Medical Decision Making 1995;15(1):25‐30. - PubMed
Oluwasola 2009
    1. Oluwasola OA, Fawole OI, Otegbayo AJ, Ogun GO, Adebamowo CA, Bamigboye AE. The autopsy: knowledge, attitude, and perceptions of doctors and relatives of the deceased. Archives of Pathology and Laboratory Medicine 2009;133(1):78‐82. - PubMed
Oppewal 2001
    1. Oppewal F, Meyboom‐De Jong B. Family members' experiences of autopsy. Family Practice 2001;18(3):304‐8. - PubMed
Pattinson 2011
    1. Pattinson R, Kerber K, Buchmann E, Friberg IK, Belizan M, Lansky S, et al. Stillbirths: how can health systems deliver for mothers and babies?. Lancet 2011;377(9777):1610‐23. [DOI: 10.1016/S0140-6736(10)62306-9] - DOI - PubMed
Rankin 2002
    1. Rankin J. Cross sectional survey of parents' experience and views of the postmortem examination. BMJ 2002;324(7341):816‐8. - PMC - PubMed
RCPAAWP 2004
    1. Royal College of Pathologists of Australasia Autopsy Working Party. The decline of the hospital autopsy: a safety and quality issue for healthcare in Australia. Medical Journal of Australia 2004;180(6):281‐5. - PubMed
Revman 2011 [Computer program]
    1. The Nordic Cochrane Centre, The Cochrane Collaboration. Review Manager (RevMan). Version 5.1. Copenhagen: The Nordic Cochrane Centre, The Cochrane Collaboration, 2011.
Rose 2006
    1. Rose C, Evans M, Tooley J. Falling rates of perinatal postmortem examination: are we to blame?. Archives of Disease in Childhood Fetal and Neonatal Edition 2006;91:F465. - PMC - PubMed
Samuelsson 2001
    1. Samuelsson M, Rådestad I, Segesten K. A waste of life: fathers' experience of losing a child before birth. Birth 2001;28(2):124‐30. - PubMed
Smith 2007
    1. Smith GC, Fretts RC. Stillbirth. Lancet 2011;370(9600):1715‐25. - PubMed
Stacey 2009
    1. Stacey D, Bennett CL, Barry MJ, Col NF, Eden KB, Holmes‐RovnerM, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database of Systematic Reviews 2009, Issue 3. [DOI: 10.1002/14651858.CD001431.pub2] - DOI - PubMed
Säflund 2004
    1. Säflund K, Sjögren B, Wredling R. The role of caregivers after a stillbirth: views and experiences of parents. Birth 2004;31(2):132‐7. - PubMed
Wagner 2005
    1. Wagner CL, Goldstein M, Conradi SE. Changing a diagnosis: the importance of neonatal autopsy. Journal of Perinatology 2005;25(1):69‐71. - PubMed

References to other published versions of this review

Horey 2012
    1. Horey D, Flenady V, Heazell AEP, Khong TY. Interventions for supporting parents' decisions about autopsy after stillbirth. Cochrane Database of Systematic Reviews 2012, Issue 6. [DOI: 10.1002/14651858.CD009932] - DOI - PMC - PubMed

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