Decision influences and aftermath: parents, stillbirth and autopsy

Horey, Dell; Flenady, Vicki; Conway, Liz; McLeod, Emma; Khong, T. Yee

doi:10.1111/j.1369-7625.2012.00782.x

Cited by 35 publications

(73 citation statements)

References 46 publications

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“…Adopting this protective role has been suggested as one way parents could retain some degree of control over their situation . Emotional distress during the PM discussion was also identified as a barrier . One parent described being an ‘emotional wreck’ and that being asked about PM was ‘just too much all at once,’ highlighting that the timing of the PM discussion is important.…”

Section: Resultsmentioning

confidence: 99%

“…Procedural factors associated with consenting to PM, familiarity with the PM procedure, reassurance that the procedure would be carried out with care and dignity, and knowing that their child's body would be respected were all cited as motivating factors …”

Section: Resultsmentioning

confidence: 99%

“…Nine were qualitative consisting of semi-structured interviews, [42][43][44][45][46][47] qualitative analysis of free-text in surveys, 6,48 and focus groups. 49 Four were mixed methods. [50][51][52][53] Impact of parent or patient characteristics and experience on pm uptake Twelve studies addressed the impact of parent or patient characteristics and PM uptake.…”

Section: Study and Participant Characteristicsmentioning

confidence: 99%

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Factors affecting uptake of postmortem examination in the prenatal, perinatal and paediatric setting

Lewis

Hill

Arthurs

et al. 2017

BJOG

110

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BackgroundPostmortem examination is the single most useful investigation in providing information to parents about why their baby or child died. Despite this, uptake remains well below the recommended 75%.ObjectiveTo address the question ‘what are the barriers and motivators to perinatal, prenatal and paediatric PM examination?’Search strategyKey databases including Pubmed and CINAHL; Cochrane library, websites of relevant patient organisations, hand search of key journals, first and last authors and references.Selection criteriaPeer‐reviewed qualitative, quantitative or mixed methods research examining factors affecting uptake or decline of perinatal or paediatric postmortem examination.Data collection and analysisNarrative synthesis; findings were compared across studies to examine interrelations.Main resultsSeven major themes describing barriers to postmortem uptake were identified: dislike of invasiveness, practicalities of the procedure, organ retention issues, protective parenting, communication and understanding, religion and culture and professional or organisational barriers. Six major themes related to factors which facilitated parental consent were identified: desire for information, contributing to research, coping and well‐being, respectful care, minimally invasive options, and policy and practice. There were a number of themes in the literature that reflected best practice.ConclusionFindings highlight the need for better health professional education and the fact some concerns may be mitigated if less invasive methods of postmortem were routinely available. New consent packages and codes of practice may have a positive impact on perception of examination after death. The landscape is changing; further research is necessary to assess the impact on postmortem uptake rates.Tweetable abstractSystematic review to explore the barriers and motivators to perinatal, prenatal and paediatric postmortem examination.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Study and Participant Characteristicsmentioning

confidence: 99%

See 1 more Smart Citation

Factors affecting uptake of postmortem examination in the prenatal, perinatal and paediatric setting

Lewis

Hill

Arthurs

et al. 2017

BJOG

110

View full text Add to dashboard Cite

show abstract

“…A major limiting factor is the discomfort some clinicians experience in broaching this question, negative views and attitudes on the value of autopsy from clinicians and parents, cost and lack of availability in different countries [8, 9]. Providing bereavement care and counselling regarding investigations that meets the needs of parents is difficult and parents report that health care providers are frequently under equipped for this task [10]. …”

Section: Introductionmentioning

confidence: 99%

Evaluation of an international educational programme for health care professionals on best practice in the management of a perinatal death: IMproving Perinatal mortality Review and Outcomes Via Education (IMPROVE)

Gardiner

Kent

Rodríguez

et al. 2016

BMC Pregnancy Childbirth

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BackgroundStillbirths and neonatal deaths are devastating events for both parents and clinicians and are global public health concerns. Careful clinical management after these deaths is required, including appropriate investigation and assessment to determine cause (s) to prevent future losses, and to improve bereavement care for families. An educational programme for health care professionals working in maternal and child health has been designed to address these needs according to the Perinatal Society of Australia and New Zealand Guideline for Perinatal Mortality: IMproving Perinatal mortality Review and Outcomes Via Education (IMPROVE). The programme has a major focus on stillbirth and is delivered as six interactive skills-based stations. We aimed to determine participants’ pre- and post-programme knowledge of and confidence in the management of perinatal deaths, along with satisfaction with the programme. We also aimed to determine suitability for international use.MethodsThe IMPROVE programme was delivered to health professionals in maternity hospitals in all seven Australian states and territories and modified for use internationally with piloting in Vietnam, Fiji, and the Netherlands (with the assistance of the International Stillbirth Alliance, ISA). Modifications were made to programme materials in consultation with local teams and included translation for the Vietnam programme. Participants completed pre- and post-programme evaluation questionnaires on knowledge and confidence on six key components of perinatal death management as well as a satisfaction questionnaire.ResultsOver the period May 2012 to May 2015, 30 IMPROVE workshops were conducted, including 26 with 758 participants in Australia and four with 136 participants internationally. Evaluations showed a significant improvement between pre- and post-programme knowledge and confidence in all six stations and overall, and a high degree of satisfaction in all settings.ConclusionsThe IMPROVE programme has been well received in Australia and in three different international settings and is now being made available through ISA. Future research is required to determine whether the immediate improvements in knowledge are sustained with less causes of death being classified as unknown, changes in clinical practice and improvement in parents’ experiences with care. The suitability for this programme in low-income countries also needs to be established.

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“…Horey and colleagues propose that autopsy results be conveyed to parents in a formal session (ie a designated appointment) in a manner that matches the gravity of the situation [318]. This recommendation was also confirmed within our study population and demonstrates an appreciation for the importance of the loss of the baby for parents.…”

Section: Conveying Autopsy Resultssupporting

confidence: 61%

Preventing stillbirths: Better data to inform interventions in Australia

Ibiebele¹

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BackgroundIn Australia, one in every 139 women reaching 20 weeks gestation will have a stillborn baby. There is significant disparity in stillbirth rates within subgroups of the Australian population. Among Aboriginal and Torres Strait Islander (Indigenous) women, the stillbirth rate is one in every 93 women reaching 20 weeks gestation. Unfortunately, there has been no reduction in the national stillbirth rates over the past two decades and nearly a third are 'unexplained'. The ability to identify women at increased risk of stillbirth is an important and challenging priority. At present in Australia, there is a paucity of high quality data on causes and contributing factors to stillbirth. Furthermore, inconsistent approaches to investigation and classification affect the quality of data on causes of death and hamper the development of effective interventions to prevent stillbirth. AimsThe primary aim of this Thesis is to describe the epidemiology of stillbirth within the Australian context. This aim was addressed by: Examining trends in stillbirth by clinical classification of cause of death, Indigenous status and gestational age, to identify focal areas for preventive efforts  Assessing gestational age specific risk of stillbirth associated with four important contributors (diabetes, hypertension, antepartum haemorrhage and small-forgestational age) to higher stillbirth rates among Indigenous women in order to identify periods of increased risk  Developing and validating a statistical model to predict the risk of antepartum stillbirth at term (≥37 weeks) using maternal and pregnancy factors as a potential decision-making aid for clinicians and women  Assessing consistency in application of the Perinatal Society of Australia and New Zealand Perinatal Death Classification system between hospital committees and an independent expert panel, to identify areas for quality improvement  Determining maternal and pregnancy factors associated with parental consent to autopsy following stillbirth and explore parents' views and experiences of the autopsy consent process to inform clinical practice iii Methods and Results Data for 1995-2011 (n=881,211 singleton births) from the Queensland Perinatal DataCollection was analysed to address the first three aims. Stillbirth trends analysis found consistently higher rates of stillbirth among Indigenous women, however, the gap in stillbirth rates had narrowed. Gestational age specific stillbirth risk analysis found disparity in the magnitude of stillbirth risk for pre-existing diabetes and small-for-gestational age between Indigenous and non-Indigenous women. Despite strong association between maternal clinical factors and antepartum stillbirth risk, the prediction model had a poor ability to predict stillbirth risk at term.Consistency in application of the perinatal death classification system was assessed by calculating agreement. A substantial level of agreement was found between hospital committee and expert panel review of a cohort of 217 stillbirth cases, howeve...

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Decision influences and aftermath: parents, stillbirth and autopsy

Cited by 35 publications

References 46 publications

Factors affecting uptake of postmortem examination in the prenatal, perinatal and paediatric setting

Factors affecting uptake of postmortem examination in the prenatal, perinatal and paediatric setting

Evaluation of an international educational programme for health care professionals on best practice in the management of a perinatal death: IMproving Perinatal mortality Review and Outcomes Via Education (IMPROVE)

Preventing stillbirths: Better data to inform interventions in Australia

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