Welcome to the Stillbirth Advocacy Working Group, otherwise known as the SAWG! We are so glad you came to our page.
- Have your say! SAWG strategic planning: At the October SAWG meeting we reviewed the last 4+ years, and started our initial brainstorming on our plans as SAWG for 2021 (and beyond). If you are a SAWG member and have not yet had the opportunity to contribute to this, please email SAWG co-chairs Zan Leisher (firstname.lastname@example.org) or Hannah Blencowe (email@example.com) for a link to a brief survey where you can provide your comments.
- Have your say! A new global MNH initiative: We recently also set out an email about a new initiative AlignMNH: Collective Action for Maternal Newborn Health to be launched 18th November. AlignMNH is inviting members of the MNH community to join its iterative design efforts by completing a brief global MNH survey. Please do take time to complete to help give a voice to stillbirth on this platform.
- Parent Voices Initiative: Help us add to the Parent Support Organizations Registry by providing us with details of stillbirth parent organisations, groups and/or point persons as part of our Parent Voice initiative by completing the survey here or sending these directly to firstname.lastname@example.org. Thank you!
Who are we?
We are a group of parents, clinicians, researchers, policy-makers 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 come from all over the world and we are always excited to welcome new members, especially from countries with high stillbirth numbers. Let us know if you are interested in joining!
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. Support for meetings is provided by the Centre of Research Excellence in Stillbirth (Stillbirth CRE), Mater Research Institute-The University of Queensland, which is also ISA’s Western Pacific Regional Office.
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!
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.
PMNCH 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!
What do we do?
We have monthly meetings on our Zoom platform courtesy of ISA’s Australia Regional Office, the Stillbirth Centre for Research Excellence (thank you CRE!!!). One of the best parts of our meetings is hearing from everyone about the latest stillbirth work we’ve been doing.
We are doing our part to build up the GLOBAL NETWORK FOR STILLBIRTH! Send us a message if you are interested in joining us.
We also get together in person once a year at the fantastic ISA annual conferences. In between times, we also get a lot of work done.
The Global Scorecard for Ending Preventable Stillbirths
One of our major projects is the Global Scorecard for Ending Preventable Stillbirths, created to track progress towards milestones of Lancet Ending Preventable Stillbirth’s Call to Action. These images show the first page of the Scorecard in English and the second page of the scorecard in Spanish.
- The Ending Preventable Stillbirths Scorecard– Full version
- The Ending Preventable Stillbirths Scorecard – Summary version
The Global Scorecard has been developed to track progress against the Call to action set out in the Lancet’s 2016 series on Ending Preventable Stillbirths.
The SAWG Blog Series
Another project is our wonderful Blog Series! Thank you to Save the Children’s Healthy Newborn Network (HNN) for hosting!
Many thanks to those who have already written posts, which go on Save the Children’s Healthy Newborn Network (HNN) website. Check out prior posts:
- Skill-building on Perinatal Death Reviews: A Facilitator Guide and resources – Tedbabe Degefie Hailegebrie, June, 2019
- Stillbirth – A silent cry for more attention – Linda Vanotoo, April 2019
- Awareness as the first step to prevention: prenatal infection and stillbirth – Amy Perhach, February 2019
- From invisibility to visibility: Global initiatives make progress in incorporating stillbirths into their publications – Paula Quigley, December 2018
- Understanding the reasons for hospital and home births in Haiti – Alka Dev, November 2018 (no post in October 2018)
- Challenging the stigma around stillbirth: Sharing stories as awareness – Maria Luisa Tejada de Rivero Sawers, July 2018 (no posts in May or June 2018)
- Data matters: Asking for what we need to end preventable stillbirths – Shannon Maloney, April 2018 (no post in March 2018)
- Preventing stillbirths with stronger perinatal death review – Sara Nam, February 2018
- The time is now to bring stillbirth out of the shadows – Debbie Haine Vijayvergiya, January 2018
- Removing fear from discussions of the connection between fetal movement monitoring and stillbirth – Danielle Pollock, December 2017
- Addressing a root cause of stillbirths in Nigeria: The shortage of female health workers – Paula Quigley, November 2017
- Stillbirth, migration and ethnicity: The bells toll for thee – Maryam Mozooni, October 2017
- Let’s end the silence around stillbirth – Lauren Christiansen-Lindquist, September 2017
The Parent Voices Initiative
SAWG has received a grant from WHO through PMNCH with the aim of finding and raising the voices of parents bereaved by stillbirth to strengthen advocacy for stillbirth prevention and post-stillbirth bereavement support. The grant supports two projects, “Finding Parent Voices” and “Raising Parent Voices“. The Finding Parent Voices project is to develop a global registry of parent support groups and organisations (both formal and informal). We are in the process of developing this registry and we are reaching out to ask you for details of organisations and/or point persons that you think should be included in the final registry.
As a guide, we are using the following definitions:
- Formal parent support organisations: these exist in full or in part to provide bereavement support to parents who have experienced a stillbirth (noting that this is often offered alongside support to parents who have experienced a newborn death or other pregnancy loss). For example, Sands in the UK.
- Informal parent support groups/networks: these exist to provide informal and group support for parents who have experienced a stillbirth (noting that this is often offered alongside support to parents who have experienced a newborn death or other pregnancy loss) and may include, but are not limited to, meet-up and community groups, Facebook groups and pages, and online forums. For example, Healing Hearts community support group in New Jersey.
- Parent support point persons: these are individuals who, through their professional work, for example as midwives or doctors, have helped to facilitate support activities for bereaved parents. Point persons may or may not create formal or informal networks or support groups, but they will have explicit intent to support parents and/or create a support group or be offering informal support to parents. Initially, we are only looking to locate point persons in countries where there are few or no formal organisations.
More information coming soon!
Below is a list of some of the initiatives we have been involved with over the past few years, to give you a taste of the breadth of our work.
- ISA supports the global call to action for the full recognition and inclusion of sexual and reproductive health and rights (SRHR) in universal health care (UHC). Sign on here to lend your own organization’s support.
- WRA “What women want – demands for quality healthcare for women and girls” survey seeking to hear from >1million women and girls worldwide asking them what their one request for quality reproductive & maternal healthcare services is, launched April 11th 2018. Opportunity to engage to advocate for stillbirths, including completing the survey and possibly a blog (WRA have added codes for stillbirths to be able to capture these responses). Survey extended to March 2019.
- Women Deliver conference in Vancouver in June 2019: anyone going should have pre-conference discussion on to maximize our presence there. Will be an excellent platform for awareness around the Global Scorecard. Joy Lawn leading session on “Who has the power in pregnancy?” with speakers from Uganda and S Africa slated to attend
Recent stillbirth-related global publications/ events/ initiatives
- February 2019 – Blog post from the Healthy Newborn Network (HNN) titled ‘Global initiatives make progress in incorporating stillbirths into their publications‘
- Independent Accountability Panel (IAP) published its 2018 report in September ‘PRIVATE SECTOR: WHO IS ACCOUNTABLE? for Women’s, Children’s and Adolescents’ Health’ with a single brief mention of stillbirths.
- September – Levels and Trends in Child Mortality – no mention of stillbirths despite new ongoing work to include stillbirths in UN-IGME core workplan
- September – WHO recommendations on home-based records for maternal, newborn and child health stillbirth mentioned in 1 study only. Not mentioned otherwise.
- June – Joint statement by WHO, UNFPA, UNICEF, ICM, ICN, FIGO and IPA on ‘Defining competent maternal and newborn health professionals’. Background document includes explicit integration of stillbirth into core competencies including respectful antenatal, postpartum and bereavement care and shared decision-making.
- Every Newborn Progress Report 2018 published by UNICEF/WHO on May 2 Fantastic to see such progress – but still much to do.
- HNN (Healthy Newborn Network) launched a midwifery page on May 5th for International Day of the midwife.
- May 2018 – HNN launched a survey to identify core recommendations for stillbirth and bereavement care
- February – UNICEF Every Child Alive Initial ½ page section in 44 page report on ‘Stillbirth: A tragedy shrouded in silence’
- Blog post from the Maternal Health Task Force – 2.6 Million Reasons to Invest in Stillbirth Estimates
- WHO launched intrapartum guidelines for a positive pregnancy experience in February 2018. Little stillbirth-specific guidance included.
Outputs from the SAWG
- Written comments sent to WHO on VA autopsy in WHO document Making every baby count: audit and review of stillbirths and neonatal deaths
- Presentation made to the Australian Senate Select Committee on Stillbirth Research and Education
- SAWG submission to the Committee can be found here.
- Countdown to 2030 blog post available here.
- Commentary on Every Woman Every Child progress report: available in BJOG. We are really pleased to see that it was featured in the PMNCH February 2018 E-blast.
- Second anniversary of Lancet’s Ending preventable stillbirths series: short article and video released by Lancet/LSHTM along with social media kit here
- Abstracts on the global Ending preventable stillbirths scorecard submitted to FIGO Rio 2018, ISA Madrid 2019, Group B Strep July 2019
- Side bar on SAWG activities submitted to WHO for ENAP progress report
- PMNCH E-blast—Make sure you sign up to receive these!
- HNN—sign up to become a member!
- Would any of your colleagues/ contacts be interested in joining – please let us know by email: Blencowe@lshtm.ac.uk and email@example.com
List of acronyms (let us know if there is an acronym we should add to this list!)
- 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
SAWG’s 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
PMNCH is in the middle of developing its new 5-year strategy and has decided to include stillbirth prevention as one focus. SAWG provided feedback on the draft PMNCH strategy during Phase 1 of the strategy development process, but many of our comments were not included in the current version, so the draft strategy still has some important deficiencies related to stillbirth. PMNCH has called for input to the revised draft strategy (available here) by next Thursday, June 4. With about 1,000 member organizations, PMNCH has a very large constituency. This means that inputs to its draft strategy will be more effective if many organizations send the same input. This is where you come in. We are asking all organisations working on stillbirth-related issues to send a message to PMNCH to do better in incorporating stillbirths in its 5-year strategy. Please take action no later than Thursday, June 4:
- Adapt our draft email for PMNCH strategy and send to PMNCH at firstname.lastname@example.org
- Adapt our draft survey responses for PMNCH strategy and use them at the PMNCH online survey here
(Note that you do not need to be a member of PMNCH in order to provide input.)
Please also share this email widely with colleagues who may be able to submit on behalf of stillbirth inclusion. The more people and organizations who intervene, the more likely our voices will be heard!
Recent publications from SAWG members
Sept 2020 – ‘Australian men’s experiences of leave provisions and workplace support following pregnancy loss or neonatal death‘ by Kate Obst et al and accompanying media article
April 2020 – ‘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’. by Dr Bharti Sharma and Dr Neelam Aggarwal
Jan 2020 – ‘Men’s grief following pregnancy loss and neonatal loss: a systematic review and emerging theoretical model‘ by Kate Louise Obst et al
Dec 2019 – ‘A retrospective review of facility-level obstetric complications and stillbirths in southern Haiti, 2013 – 2016‘ by Alka Dev et al
Other work by SAWG members
Aliki Christou: at the University of Sydney and team have developed interviewer guidelines for interviewing bereaved mothers and fathers in Afghanistan; please email her at email@example.com for further information or to access these. You can access the training manual here: Stillbirth study Afghanistan_Training Manual for Interviewers_v1.1_10.10.17
Debbie Haine: Establishment of Stillbirth Resource Center, New Jersey
What is advocacy?
Not sure what “advocacy” really means? No worries! Check out these pages from Save the Children International to get started. It’s all about MAKING CHANGE HAPPEN and at ISA, that means ending preventable stillbirths and supporting families and caregivers after a death – JOIN US!
Let us know what you think about our work through Twitter #EndStillbirths @ISAStillbirth or on our Facebook page (don’t forget to like our page).