Welcome to the Stillbirth Advocacy Working Group, otherwise known as the SAWG! All are warmly welcome to join our group. Please click “Join us” below! Please follow us at @CountStillbirth and use hashtags #Stillbirths #EndStillbirths
To learn more about our work and how you can take action, take some time to explore the links below. Please feel free to email us at SAWG@stillbirthalliance.org with your questions and comments!
Our vision: A world in which preventable stillbirths no longer occur, and care for families and health workers after stillbirths is compassionate, high-quality, and culturally appropriate.
1. Develop and support a network that advocates for stillbirth prevention and care within the existing global architecture (Global Strategy, Every Newborn Action Plan, Quality-Equity-Dignity, etc.)
2. Ensure key evidence and data are visible, resourced, tailored appropriately for key audiences, and linked to accountability at country level and globally
3. Seize key moments to advocate for stillbirth prevention and care
4. Empower “bottom-up” advocacy from parents and parent groups
SAWG in action
SAWG members work together around the world and in our own countries and communities to realize the 4 pillars of our mission: building a global NETWORK, promoting DATA as a tool for accountability, seizing KEY MOMENTS for advocacy, and supporting PARENT advocacy.Explore the tabs below to learn more about our work and think about how you can help.
We are pleased to highlight some of the wonderful work of SAWG members!
Mamadou Berthé at the National Institute of Public Health in Mali and his colleagues have just published Study of the Déterminants of Stillbirths in the Reference Health Centers of Sélingué and Yorosso (Sikasso Region) From January 1, 2015, to December 31, 2017
Danielle Pollock at the University of Adelaide, Australia, has just published this article: Breaking the silence: Determining Prevalence and Understanding Stillbirth Stigma
Aliki Christou at the University of Sydney has published this article: ‘I should have seen her face at least once’: parent’s and healthcare providers’ experiences and practices of care after stillbirth in Kabul province, Afghanistan.
Aliki also developed interviewer guidelines for interviewing bereaved mothers and fathers in Afghanistan. Please email her at email@example.com for further information or to access the guidelines.
Sue Steen is a co-founder of Birth With Dignity: Mothers and Babies of Uganda. You can listen to Sue discuss her work or contact her for more information. Sue recently published this paper on “Raising the bar: development of a perinatal bereavement programme“.
Mary Kinney writes about Elevating women’s voice in the politics of newborn health on the Collaboration for Health Systems Analysis and Innovation website; CHESAI is a health policy collaborative based in South Africa.
Debbie Haine, co-founder of 2 Degrees Foundation, shares the passage of legislation for the establishment of a Stillbirth Resource Center in New Jersey, USA!
Kate Obst of the University of Adelaide published two papers on men’s grief: Australian men’s experiences of leave provisions and workplace support following pregnancy loss or neonatal death and Men’s grief following pregnancy loss and neonatal loss: a systematic review and emerging theoretical model. Also see the accompanying media article.
Drs Bharti Sharma and Neelam Aggarwal published a paper on Classifying stillbirths in a tertiary care hospital of India: International Classification of Disease-perinatal Mortality (ICD-PM) versus cause of death-associated condition (CODAC) system.
Alka Dev published a paper on stillbirths in Haiti: A retrospective review of facility-level obstetric complications and stillbirths in southern Haiti, 2013 – 2016.
SAWG works to ensure that stillbirths are fully integrated into the reproductive, maternal and child health (RMCH) continuum.
- SAWG provided written comments to WHO on their verbal autopsy guidance in Making every baby count: audit and review of stillbirths and neonatal deaths
In addition, SAWG reviews global and regional RMCH reports and publications regularly to check how well stillbirth prevention and post-stillbirth support are integrated. For example:
- The Independent Accountability Panel (IAP), mandated by the UN Secretary General to assess progress in women’s and children’s health, published its 2018 report, PRIVATE SECTOR: WHO IS ACCOUNTABLE? for Women’s, Children’s and Adolescents’ Health, with a single brief mention of stillbirths.
- The World Health Organization’s 2018 WHO recommendations on home-based records for maternal, newborn and child health mentioned stillbirth only in 1 study.
- A joint statement by WHO, UNFPA, UNICEF, ICM, ICN, FIGO and IPA on Defining competent maternal and newborn health professionals (2018) included a background document with integration of stillbirth into core competencies including respectful antenatal, postpartum and bereavement care and shared decision-making.
- The Every Newborn Progress Report 2018 published by UNICEF/WHO showed significant progress on integration of stillbirths.
- UNICEF’s 2018 Every Child Alive report included a half-page section on ‘Stillbirth: A tragedy shrouded in silence’
- WHO launched intrapartum guidelines for a positive pregnancy experience in 2018, with little stillbirth-specific guidance.
- The UN Inter-Agency Group on Child Mortality Estimation (UN-IGME) published its 2019 report, Levels and Trends in Child Mortality, with no mention of stillbirths.
In 2019, SAWG published a blogpost summarizing the status of stillbirth integration, Global initiatives make progress in incorporating stillbirths into their publications. We aim to update this report for 2020.
SAWG has received a grant from the World Health Organization (WHO) through our founding organization, the Partnership for Maternal, Newborn and Child Health (PMNCH), for the Parent Voices Initiative (PVI). The aim of PVI is to find and raise the voices of parents bereaved by stillbirth to strengthen advocacy for stillbirth prevention and post-stillbirth bereavement support. The PVI includes two projects:
- “Finding Parent Voices”, a Registry of all parent support organizations globally, to be hosted on the ISA website, and
- “Raising Parent Voices”, development and testing of an Advocacy Toolkit to support parents in raising their voices so their views and needs are heard within their country’s health goal-setting agendas.
The Registry is nearing completion and should be available on the ISA website by October 2021. The Toolkit project is being undertaken in partnership with organizations in India (the Public Health Foundation of India, PHFI, and the Postgraduate Institute of Medical Education and Research, Chandigarh, PGIMER) and Kenya (Still A Mum), and will be completed by October 2021.
To learn more:
One of our major projects is the Global Scorecard for Ending Preventable Stillbirths, created to track progress towards the Call to action set out in the Lancet’s 2016 Ending Preventable Stillbirths series. Click on the links below to access the 2020 Scorecard which was updated by UNICEF, as well as 2019 versions of the scorecard in both English and Spanish.
SAWG has submitted abstracts on the Scorecard to several conferences, including:
- XXII FIGO World Congress of Gynecology & Obstetrics in 2018 in Rio de Janeiro, Brazil; abstract presented by SAWG co-chair Hannah Blencowe
- ISA Madrid 2019 conference
- International Conference on Group B Strep, hosted by Group B Strep International in July 2019: program and video presentation by SAWG co-chair Susannah Leisher: Introducing a scorecard to measure progress against global targets.
ISA and the SAWG were very proud to be a co-host of the historic October 21, 2020 launch of the first-ever country-specific stillbirth estimates produced by the UN Inter-Agency Group for Child Mortality Estimation (UN-IGME) in conjunction with WHO and UNICEF. Through our Stillbirth Spokespersons registry (see above), we identified parents and midwives affected by stillbirth and successfully advocated for their participation in the launch. Parents and midwives spoke during the launch event and generously provided their stories and images for sharing.
Click here to see the Youtube recording of the launch event and particularly our parent and midwife spokespersons!
The slides from the event are available here. Also available is a summary of challenges related to stillbirth prevention in Afghanistan. Read the report: A neglected tragedy: The global burden of stillbirths 2020. Read this blog from the World Bank commenting on the report.
See the UN press conference announcing the launch of the estimates here (ISA chair and SAWG co-chair Susannah Leisher was a co-presenter). Read UNICEF’s accompanying blog ‘Shrouded in silence: The untold story of stillbirths‘.
More information on the launch is available on UNICEF’s webpage here.
Some of the SAWG’s publications are listed below:
- A comment on “Impact of COVID-19 on maternal and child health” in Lancet Global Health
- A Rapid Response to “Reaching all women, children, and adolescents with essential health interventions by 2030” in BMJ, “Leaving no one behind: Where are 2.6 million stillbirths?”
- Countdown to 2030 blog post on the MamaYe! website: 2.6 million reasons to invest in stillbirth estimates; also here on the website of Harvard’s Maternal Health Task Force.
- A Commentary on Every Woman Every Child progress report in BJOG, Every Woman, Every Child’s ‘Progress in Partnership’ for stillbirths: a commentary by the stillbirth advocacy working group
SAWG is represented on the Every Newborn Action Plan Management Team through co-chair Susannah Leisher. SAWG advocated strongly for fuller inclusion of stillbirths within the new Every Newborn Action Plan targets and milestones for 2030.
Opportunities for action
Whether or not you are a SAWG member, there is something you can do. Explore the tabs below and take action today!
- The Partnership for Maternal, Newborn and Child Health (PMNCH), which founded SAWG, is an alliance of more than 1000 organizations, including ISA, in 192 countries, working on sexual, reproductive, maternal, newborn, child and adolescent health. PMNCH serves as a platform for the members to align objectives, strategies and resources, and agree on interventions to improve maternal, newborn, child and adolescent health. If you represent a health-related organization, consider joining PMNCH to add your voice. Even if you don’t join, you can sign up to receive PMNCH’s monthly e-blasts.
- Join the Healthy Newborn Network
- AlignMNH is a new global initiative for maternal and newborn health. Consider joining!
A pillar of our mission is to “Seize key moments” as opportunities to raise awareness of stillbirth. Please let us know about relevant events missing from our calendar!
SAWG meets virtually on the first Wednesday of every month, except the month of the annual ISA conference, when we hold an in-person meeting.
In 2021, the ISA conference will be November 11-13 in Brisbane, Australia, and our in-person meeting will be earlier that same week, date and time TBD.
Virtual meetings are hosted on Zoom courtesy of ISA’s Western Pacific Regional Office, the Stillbirth Centre for Research Excellence. Please contact us to join SAWG and add your name to our email list in order to receive an invite to our next meeting!
About the SAWG
The SAWG is a group of parents, clinicians, researchers, policymakers, students and others who are interested in using ADVOCACY as a tool to help end preventable stillbirths and support families and caregivers after a death. In short, we are the ADVOCACY ARM of the International Stillbirth Alliance. We are co-chaired by Zan Leisher, ISA Chair, and Hannah Blencowe of the Centre for Maternal, Adolescent, Reproductive, & Child Health (MARCH) at the London School of Hygiene and Tropical Medicine. To find out more about our group, please explore the tabs below.
Our vision is a world in which preventable stillbirths no longer occur, and care for families and health workers after stillbirths is compassionate, high-quality, and culturally appropriate.
Our mission is to:
- Develop and support a network that advocates for stillbirth prevention and care within the existing global architecture (Global Strategy, Every Newborn Action Plan, Quality-Equity-Dignity, etc.)
- Ensure key evidence and data are visible, resourced, tailored appropriately for key audiences, and linked to accountability at country level and globally
- Seize key moments to advocate for stillbirth prevention and care
- Empower “bottom-up” advocacy from parents and parent groups
The SAWG was founded in 2016 by the Partnership for Maternal, Newborn and Child Health (PMNCH) of the World Health Organization. When PMNCH shifted its strategic priorities, ISA and LSHTM stepped in to keep the SAWG going. The MARCH Centre, led by Dr Joy Lawn, brings together over 200 researchers at the London School of Hygiene & Tropical Medicine to improve the health of women, children & adolescents worldwide. ISA is proud to be connected to MARCH through our advocacy work!
SAWG members come from all over the world and we are always excited to welcome new members, especially parents and those from countries with high stillbirth numbers. Please note that if your main interest is bereavement support or prevention, you may be more interested in ISA’s Bereavement Working Group or Prevention Working Group. If your interest is using advocacy as a tool for ending preventable deaths and ensuring respectful care after death, consider joining SAWG!
If you are new to advocacy…
Many SAWG members have no background in global or regional work, or in advocacy. We warmly welcome everyone who shares our vision and mission! If you are new to this work, we hope you will find the tabs below helpful. Please contact us at SAWG@stillbirthalliance.org with questions or suggestions!
Not sure what “advocacy” really means? No worries! Explore these pages at Save the Children, MamaYe!, the World Health Organization, and Care International to get started. Ultimately, “advocacy” means influencing decisions, policies and practices so that there are fewer preventable stillbirths and newborn deaths, and better care after these deaths. JOIN US!
There are many acronyms used in various aspects of our work. We hope the list below will be useful for you. Please let us know what else to add to this list, or how we can make it more useful to you!
BJOG: British Journal of Obstetrics & Gynecology
CVRS: civil vital registration statistics
DAI: Development Alternatives, Inc.
DHS: Demographic and Health Survey
FIGO: International Federation of Gynecology & Obstetrics
HNN: Healthy Newborn Network
ICM: International Confederation of Midwives
ICN: International Council of Nurses
IGME: Inter-Agency Group on Mortality Estimation
IMPROVE: IMproving Perinatal mortality Review and Outcomes Via Education
IPA: International Pediatrics Association
ISA: International Stillbirth Alliance
LMIC: low- and middle-income countries
LSHTM: London School of Hygiene & Tropical Medicine
MCH: maternal and child health
MOH: Ministry of Health
MNH: maternal & newborn health
MNCH: maternal, newborn and child health
MPDSR: Maternal and perinatal death surveillance and response
NCD: non-communicable diseases
PH: public health
PMNCH: Partnership for Maternal, Newborn and Child Health
PND: perinatal deaths
PSANZ: Perinatal Society of Australia and New Zealand
SEARO: WHO Southeast Asia Regional Office
TOR: terms of reference
UNFPA: United Nations Population Fund
UNICEF: United Nations Children’s Fund
UN-IGME: United Nations Inter-agency Group for Child Mortality Estimation
VASA: Verbal Autopsy and Social Autopsy
WD: Women Deliver
WHA: World Health Assembly
WHO: World Health Organization
WRA: White Ribbon Alliance