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Advocacy Working Group

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.

Our mission:

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 aliki.christou@sydney.edu.au 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.

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:

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 supported country-specific advocacy work. For example:

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:

  1. “Finding Parent Voices”, a Registry of all parent support organizations globally, to be hosted on the ISA website, and
  2. “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 March 2021. The Toolkit project is being undertaken in partnership with organizations in India (the Postgraduate Institute of Medical Education and Research, Chandigarh) and Kenya (Still A Mum), and will be completed by June 30, 2021.

To learn more:

  • This is the proposal submitted by SAWG to PMNCH for the Parent Voices Initiative
  • This is the mid-term report submitted by ISA to PMNCH for the Parent Voices Initiative

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.

2020 Global Scorecard for Ending Preventable Stillbirths

2019 Global scorecard – long version – English

2019 Global scorecard – short version – English

2019 Global scorecard – long version – Spanish

2019 Global scorecard – short version – Spanish

SAWG has submitted abstracts on the Scorecard to several conferences, including:

 

The SAWG publishes a regular blog series which is hosted by Save the Children’s Healthy Newborn Network (HNN). You can view all blog posts here.

We are very grateful to those who have written posts, and are always looking for volunteers to write a new post. Please contact us if you are interested. You may also wish to consider joining HNN.

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:

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!

Key events


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!

Monthly meetings


The next SAWG meeting is Wednesday, March 3, 2021, from 6-7 am EST. Contact us to join SAWG and receive an invite!

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:

  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

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!

Join us!


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
HQ: headquarters
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
NN: neonatal
PH: public health
PM: post-mortem
PMNCH: Partnership for Maternal, Newborn and Child Health
PND: perinatal deaths
PSANZ: Perinatal Society of Australia and New Zealand
SB: stillbirth
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

We create meaningful connections for our members around the world.

Global impact

We seek out partnerships on every continent to realize our mission of ending preventable deaths and ensuring respectful care

Collaboration

We work with our member organizations to connect people locally across the globe and thereby improve standards of care within their region.

Saving Lives

By unifying the work being done in research, clinical practice and communities, we are helping reduce the unacceptably high loss of lives through stillbirth.

Data Driven

We support rigorous scientific research to ensure effective action for stillbirth and newborn death prevention and bereavement support.