Priority Area Three

Implementing best practice in care after stillbirth and in subsequent pregnancies

Priority Area Three leads: Associate Professor Fran Boyle, Professor Jonathan Morris, Professor David Ellwood, Dr Dell Horey

Priority area three focuses on improving care around the time of stillbirth, and in subsequent pregnancies. The psychosocial impact on mothers and families and society is substantial, yet the care received by parents in Australia is highly variable. Our studies show parents’ needs are frequently unmet. Parents face many critical decisions following stillbirth and more support and guidance is needed, particularly around autopsy consent. For those embarking on subsequent pregnancies, there is up to a five-fold increased risk of stillbirth. Increased anxiety and fear in subsequent pregnancies is common, yet there is little guidance for clinicians on the optimal clinical care for these women and their families. The additional economic costs of stillbirth need to be quantified for efficient health service planning. Based on our strong clinical and research experience in this area including clinical practice recommendations, we will implement best practice on immediate care after a stillbirth and develop a model of best practice in a subsequent pregnancy.

  • Implementation of best practice care after stillbirth: Current practices, views and experiences with bereavement care - survey of hospitals

    Study Team: Fran Boyle, Vicki Flenady, Dell Horey, David Ellwood, Madeline Forbes, Johanna Laporte


    The purpose of this study is to understand the current organisational context for perinatal bereavement care and perinatal mortality review processes in Australian maternity care settings and to identify areas in which improvements may be needed. The ultimate aim of the study is to improve care and outcomes for parents whose baby is stillborn or dies soon after birth by building the capacity of clinicians and their organisations to provide high quality perinatal bereavement care. For more information on this project, please see ‘Current practices, views and experiences of perinatal mortality audit - survey of hospitals’.

  • Developing a parent version of a guideline for respectful and supportive perinatal bereavement care

    Study Team: Fran Boyle, Dell Horey, Philippa Middleton, Paula Dillon, Julie Dean, Vicki Flenady 


    Evidence-based perinatal bereavement care guidelines aim to ensure all parents receive the best possible care when a baby dies before or soon after birth. This project aims to develop a parent version of the Perinatal Society of Australia and New Zealand/Stillbirth Centre of Research Excellence Clinical Practice Guideline for Respectful and Supportive Perinatal Bereavement Care. The parent version will complement the clinical practice guideline and will be developed in close collaboration with parents to ensure it contains relevant and usable information in an appropriate form. We will follow established processes set out by the Guidelines International Network, including multistage consultation and co-design.

    Funding: Stillbirth Foundation Australia

     

  • Improving the emotional wellbeing of parents after perinatal loss: Development and evaluation of an online perinatal bereavement support and translation to clinical practice.

    Study Team: Siobhan Loughnan, Vicki Flenady, Fran Boyle, Julie Dean, Belinda Norman, Dell Horey, Emily Callander, Claire Jackson, Aurora Bermudez-Ortega, Sara Crocker. The program draws on the experience of an expert advisory panel including representation from Red Nose, Sands, Stillbirth Foundation, medical clinicians, clinical psychologists, midwives, nurses and social workers in practice around Australia.


    Improving perinatal bereavement care after the loss of a baby is an urgent priority in Australia and internationally. This project aims to improve primary care capacity to deliver effective and easily accessible bereavement care to parents following stillbirth or neonatal death. The Stillbirth CRE will develop a brief online, self-guided perinatal bereavement support program. The proposed program will be based on best practice guidelines for perinatal grief management and will utilise evidence-based psychotherapeutic skills and strategies to help parents’ cope with the normal grief process and manage the emotional distress that comes after the death of a new baby. The program will also provide strategies to assist parents in building resilience and coping abilities that may be helpful for emotional wellbeing over the longer-term. This program will be co-designed and developed with parents and healthcare providers across Australia to ensure the program meets the needs of parents seeking perinatal bereavement-focused education and psychological support. The program will be evaluated in a randomised controlled trial to determine the program’s efficacy and acceptability before implementation into clinical care. If effective, this program will provide parents in Australia with an accessible, evidence-based option for perinatal bereavement support and help improve referral options for healthcare providers in the community, particularly for those residing in regional and rural areas of Australia where bereavement support services may be limited.

     Student opportunities available. Please contact Siobhan.Loughnan@mater.uq.edu.au for more information.

     Funding: Brisbane Diamantina Health Partners - MRFF Rapid Applied Research Translation, Stage Two

     

  • Stillbirth in Lao PDR

    Study Team: Molina Chouommanivong, Sediaq Karimi, Jo Durham, Vanphanom Sychareun, Vicki Flenady, Dell Horey, Fran Boyle 


    Stillbirth is a major global concern. However, most research has been conducted in high-income countries with limited studies in low-middle income countries. This qualitative study explores the stillbirth experiences of health professionals in the Lao People’s Democratic Republic, a lower-middle income country in South-East Asia.

    In-depth interviews were conducted with 33 health care providers (doctors, midwives and nurses) and thematically analysed. The study formed part of a Master of International Public Health award completed by Sediqa Karimi and involved collaboration with Laotian healthcare partners.

    Full details will be available soon in a forthcoming publication.

  • Understanding parents' decision-making needs for autopsy consent after stillbirth: Framework analysis of a large survey

  • Understanding clinicians' decision-making needs for autopsy consent after stillbirth: Framework analysis of a large survey

  • Lived experience of Cape York Aboriginal and Torres Strait Islander women, families and health care workers in regard to stillbirth

    Study Team: Sue Vlack, Diana Jans, Fran Boyle, Deanna Stuart-Butler, Mark Wenitong, Vicki Flenady


    Stillbirth happens more often among Aboriginal and Torres Strait Islander women compared with non-Indigenous women in Australia. Much of the research contributing to understanding of social and emotional needs after stillbirth reflects the views of mainstream communities and is missing the voices of Aboriginal and Torres Strait Islander women. A greater understanding of Aboriginal and Torres Strait Islander womens’ experiences of stillbirth is necessary to guide measures for culturally appropriate after-care.

    We aim to document the stories of Aboriginal and Torres Strait Islander women and families affected by stillbirth in Cape York and Cairns. This is a collaborative project between the Stillbirth CRE and the Apunipima (Cape York) Health Council.

  • Care in subsequent pregnancies following stillbirth: an international survey of parents

    Study Team: Aleena Wojcieszek, Fran Boyle, Jose Belizan, Jillian Cassidy, Jan Jaap Erwich, Lynn Farrales, Mechthild Gross, Alex Heazel, Susannah Leisher, T Mills, Margaret Murhpy, K Pettersson , C Ravaldi, J Ruidiaz, Dimitrios Siassakos, Bob Silver, Claire Storey, A Vannacci, Philippa Middleton, David Ellwood, Vicki Flenady


    Parents entering a pregnancy after stillbirth face an increased risk of stillbirth, along with many other adverse outcomes. These parents often experience intense anxiety during subsequent pregnancies, which may also contribute to poor outcomes. There is little research on best practice care in pregnancies after stillbirth. In this study we asked parents from 40 countries about the care they received during pregnancies following stillbirth.

    This study has been published in BJOG: An International Journal of Obstetrics and Gynaecology, and can be accessed here.

  • Care prior to and during subsequent pregnancies following stillbirth for improving outcomes - a Cochrane systematic review

    Study Team: Aleena Wojcieszek, Emily Shepherd, Philippa Middleton, Zohra Lassi, Trish Wilson, Margaret Murphy, Alex Heazell, David Ellwood, Bob Silver, Vicki Flenady

     

    Parents entering a pregnancy after stillbirth face an increased risk of stillbirth, along with many other adverse outcomes. These parents often experience intense anxiety during subsequent pregnancies, which may also contribute to poor outcomes. Expectant parents who have previously had a stillborn baby are likely to benefit from extra medical care and emotional support, but there is currently little evidence to help clinicians provide the best care to these parents. In this study, we assessed the effects of different interventions or models of care prior to and during subsequent pregnancies following stillbirth on maternal, fetal, neonatal and family health outcomes, and health service utilisation.

     This study has been published in the Cochrane Database of Systematic Reviews and can be accessed here.

  • Future research directions for to inform clinical practice for care in pregnancies after stillbirth

    Study Team: Aleena Wojcieszek, Alex Heazell,, Philippa Middleton, David Ellwood, Bob Silver, Vicki Flenady


    Providing high-quality care in subsequent pregnancies following stillbirth has been identified as a priority. However, there is little evidence to inform clinical practice during these pregnancies. By consulting with an international panel of experts in stillbirth research, this study aimed to identify the specific research directions most pressing, appropriate, and valuable to informing clinical practice in this area.

    This research has been published in BMJ Open and can be accessed here.

  • 30 year follow-up of parents after stillbirth

    Study Team: Fran Boyle, Jake Najman, Dell Horey, Vicki Flenady, John Vance, John Thearle


    The study aims to investigate the consequences of stillbirth for parents and families over a 30-year time span.

    Stillbirth has a profound effect on parents and families and the consequences may be long-lasting and life-changing. Studies show that psychological distress may continue for at least several years, but little information is available about longer-term consequences. In 1985, the Family & Child Health Study (FACHS) interviewed 413 families within 6-8 weeks of experiencing the death of a baby, including 99 families who had experienced stillbirth. These families, and a comparison group of 392 families who had a surviving baby, were recruited through seven south-east Queensland hospitals between 1985 and 1989. Families were followed-up to assess their psychological, social and physical health on four occasions over the next 7 years. The FACHS remains one of the largest prospective population-based studies of perinatal bereavement and is widely cited in the field.

    We are now uniquely placed to follow-up these families some 30 years later. This study will follow-up with FACHS participants who experienced stillbirth and conduct interviews with a subgroup of those families.

    Student opportunities available. Please contact f.boyle@uq.edu.au for more information.

  • Parental Involvement in Perinatal Mortality Review

    Study Team: Fran Boyle, Dell Horey, Dimitrios Siassakos, Christy Burden, Danya Bakhbakhi, Bob Silver, Vicki Flenady

     

    Parental engagement in the perinatal review process following stillbirth or newborn death is now strongly advocated by bereaved parents, their support organisations, and many health care professionals. However, this is a novel concept in many countries and health care settings. To gain understanding of current international practices in engaging parents in perinatal mortality reviews this comparative cross-country study examines clinicians’ reports of the extent to which parents are involved in perinatal review in six high income countries: Australia; New Zealand; UK; Ireland; US; and Canada.

    Full details will be provided in a forthcoming publication.