This article was originally published by CHESAI
At the February 2020 CHESAI meeting, Manya van Ryneveld led the current affairs discussion on public participation. It was a simulating presentation highlighting two case studies of innovative forms of public participation, and both examples featured the powerful role of women’s participation. The discussion was a reminder of my own journey with women’s rights and women’s voice in health and politics, and most recently, efforts in bringing women’s voice into the politics of newborn health. The aim of this blog is to share these ideas with experts in health policy and systems research and get feedback on how to strengthen public participation of women in the care of both themselves and in the care of their babies.
Who has been participating in the politics of newborn health? Mostly health professionals and scientists. In 2016, Jeremy Shiffman published an analysis of the emergence of global attention to newborn survival and found that the “newborn survival network” were primarily technically oriented actors – clinicians and academics who work for development partners, professional associations, UN, and donor agencies. He argued that the network must expand in membership and approach in order to evolve in a political direction. An analysis in The Lancet Every Newborn series (2014) found civil society to be weak to non-existent at country level for newborn health, but did acknowledge parent groups as actors helping to energize the newborn health movement.
Who needs to participate more in the politics of newborn health? Organized and outraged women, mothers, and affected parents. Women and parents have already been engaged in a multitude of ways. Parents, particularly mothers in many societies, have been and continue to be the primary caregivers for newborns but they are also the best advocates for their infant’s survival and well-being. Newborns cry and make noise, but they do not have the agency or autonomy as infants to advocate for their right to health. Stillborns have no voice. It is their parents who can shout for their rights and hold all stakeholders accountable for better care, better policies and changing of social norms around harmful practices.
Parent groups, mostly in high-income countries, have had some success (learn more here). For example, parents in the USA, the United Kingdom and Australia successfully lobbied for pain management and family-friendly hospital-wide changes, such as having the right to stay with their children. More recently, parent groups in Europe have successfully advocated to national assemblies and even to the European Union for improving the treatment and care for preterm babies leading to policy change around care for newborns, including family-centred approaches and developing new standards of care. These successful efforts were orchestrated by affected parents who collaborated with health professionals, politicians and other stakeholders to advocate for changes in policies and practice around specific health systems issues.
Why do we need to elevate women’s participation in the politics of newborn health? Change has been too slow for reducing maternal and newborn survival and preventing stillbirth. Millions of women suffer from the death of their baby every year, including 2.6 million women who experience a stillbirth and another 2.5 million women who lose their baby in the first month. Then there are 30 million women each year who have newborns that require some level of inpatient care because they are small (small for gestational age or preterm) and/or sick. Far too many women still die from complications in pregnancy and childbirth, last estimate at 295,000 mostly preventable deaths. Women also face extreme challenges around their reproductive health, from lack of choice and lack of access of modern contraception to surviving severe childbirth complications, such as obstetric fistula. These women and their families often suffer for the rest of their lives in silence, as these issues, especially stillbirth, preterm and fistula, remain taboo in many societies. Empowering women, mothers and parents will influence newborn survival and long-term health and well-being and shift the issue of newborn health into a more political realm.
How do we strengthen women’s participation in the politics of newborn health? Intentional efforts are needed to bring women’s voice into all levels of the system e.g. the micro level of individual health care services, the meso level of hospital management and accountability, and the macro level of policy development and resource mobilization. For a recent report, I collaborated with a group of experts, including affected mothers, parent organizations and researchers on a chapter about a parent engagement in the care of inpatient newborn care. We developed a new framework for strengthening parent engagement (which wasn’t included in the final report). The framework seeks to strengthen engagement through strong partnerships between and among mothers, parents and health care professionals, as well as the families, communities and systems that support them. Using a social ecological model, we propose a five-level model as an organizing framework to better understand the opportunities for partnerships and strategies to strengthen these partnerships:
- The individual infant/parent/family unit is at the centre where strategies are focused on parent and family knowledge, attitudes and skills needed to fulfil their role as primary caregiver for their sick or small newborn.
- The interpersonal level considers care delivered by health care providers and their knowledge, attitudes and skills in people-centred care to fulfil their role as a caregiving partner.
- The institutional level recognizes the critical role of the health facility and its personnel in creating a supportive environment for parent and family presence and family-provider partnership to occur.
- The community level shows potential partnership opportunities for raising awareness and empowering communities to support families with small and sick newborns.
- The social/political level includes policies, guidelines and social norms that provide an environment for partnership between parents, families and communities with institutions and health care providers, such as family leave policies or breastfeeding supportive legislation.
The different levels of the framework are interconnected, and the model illustrates the complex interplay between individual, parent, family, health care providers, health services, community, and societal and policy factors, as well as the range of factors that can enable or hinder parent and community engagement. Using this framework, we have already conducted an initial mapping of literature about parent engagement and found a wealth of knowledge, but also identified major gaps. We continue to think about it and consider how to strengthen it and advance it for future work.
Why do I care so much about women’s voice in newborn politics? My journey working on maternal and newborn health coincided with me becoming a parent. My first child was born just one year after starting with Save the Children; the second child was born three years later. Therefore, my lens on maternal and newborn health was never just from a professional standpoint; it was indeed quite personal as I physically, mentally and emotionally went through the antenatal, childbirth and postnatal periods while working on the issues. You can read more about my personal experience here.
For the past decade, I have worked for Save the Children’s Saving Newborn Lives project, which has placed me at the forefront of global policy-making and allowed me to work in other African countries at local and national levels with Ministries of Health. Time and again, I found myself sitting as a new mother, at the decision-making table for newborn health policy and programming, and thinking “where are the women who have suffered and why are they not here demanding change.” Or I would walk through a maternity ward and a mother of a stillborn was recovering in a room full of women with newborns. “Why is she not given privacy?”
With my voice as a woman in newborn politics, I have been committed to bring the voice of affected parents to the table – and thankfully have met many other women and men on the same mission. I am most humbled when meeting affected mothers or fathers of stillbirth or prematurity who have started an organization that helps other affected families or who have the courage to speak up at high-level political national or global events. Parent groups are expanding and becoming more organized and, as such, we are seeing change. Recently, two groups representing parent interests have been officially invited into the global “newborn survival network”. We have also had success with activities, such as World Prematurity Day and promoting the Kangaroo Mother Care challenge. Elevating women’s participation in the politics of newborn health will be at the heart of the change we wish to see for all mothers and babies to survive and thrive.
And until then, as a woman, I remain enraged that other women are suffering. As a parent, I am heartbroken that other parents suffer the preventable death or disability of their child. As a health policy and systems researcher, I am determined to bring new ideas to the table and shift the tradition of burden specific advocacy into something bigger and more useful to health policy makers and health managers. As an advocate, I am committed to strengthening public participation of women in newborn politics.