Global report on preterm birth and stillbirth (5 of 7): advocacy barriers and opportunities

Background Efforts to achieve the Millennium Development Goals (MDGs) to improve maternal and child health can be accelerated by addressing preterm birth and stillbirth. However, most global health stakeholders are unaware of the inextricable connections of these adverse pregnancy outcomes to maternal, newborn and child health (MNCH). Improved visibility of preterm births and stillbirths will help fuel investments and strengthen commitments in the discovery, development and delivery of low-cost solutions globally. This article addresses potential barriers and opportunities to increasing global awareness and understanding. Methods Qualitative research was conducted to analyze current knowledge, attitudes and commitments toward preterm birth and stillbirth; identify advocacy challenges; and learn more about examples of programs that successfully advocate for research and appropriate interventions. Forty-one individuals from 14 countries on six continents were interviewed. They included maternal, newborn, and child health advocates and implementers, United Nations agency representatives, policymakers, researchers, and private and government donors. Results A common recognition of three advocacy challenges with regard to preterm birth and stillbirth emerged from these interviews: (1) lack of data about the magnitude and impact; (2) lack of awareness and understanding; and (3) lack of low-cost, effective and scalable interventions. Participants also identified advocacy opportunities. The first of these opportunities involves linking preterm birth and stillbirth to the MDGs, adding these outcomes to broader global health discussions and advocacy efforts, and presenting a united voice among advocates in the context of broader MNCH issues when addressing preterm birth and stillbirth. Another key opportunity is putting a human face to these tragedies—such as a parent who can speak to the personal impact on the family. Lastly, several interviewees suggested identifying and engaging champions to garner additional visibility and strengthen efforts. Ideal champions will work collaboratively with these and other maternal, newborn and child health issues. Conclusion: Advocacy efforts to add preterm births and stillbirths to broader MNCH goals, such as the MDGs, and to identify champions for these issues, will accelerate interdisciplinary efforts to reduce these adverse outcomes. The next article in this report presents an overview of related ethical considerations.

HICs-despite having health systems with more resources to devote to improving maternal, newborn and child health outcomes [4].
Despite the magnitude of these public health burdens, many causes of both preterm birth and stillbirth remain largely unknown. While research has been undertaken in HICs, no eff ective interventions have been identifi ed to prevent preterm birth. Additionally, there is a lack of systematic evaluations of solutions to reduce the burdens of both outcomes, particularly in LMICs. Few believe enough resources have been allocated to thoroughly research these issues.
Raising awareness and advocating for these issues has been diffi cult because of the lack of knowledge about the magnitude of the health, economic, and social impacts of preterm birth and stillbirth. Th e lack of low-cost, scalable interventions with proven impact for low-resource settings remains a barrier to advocating for more resources and funding.
Th e interviews conducted for this article provide insight into current attitudes and commitments of global health leaders and organizations, fi nancial partners, researchers, healthcare practitioners and other key stake holders. Th is will enable advocates to examine the best strategies to implement successful, sustained advocacy eff orts to prevent preterm birth and stillbirth.

Focus of article
Th is article summarizes qualitative research on advocacy issues relating to global preterm birth and stillbirth. Th e research sought to answer the following questions: • What is the extent of knowledge on preterm birth and stillbirth? • Who has made these issues priorities, and why? • What has prevented governments and organizations from making them a priority? • What would drive future commitment and focus? • What are the advocacy elements of successful pro grams working on these issues? • What are the main challenges to conducting preterm birth and stillbirth advocacy? Information on attitudes, behaviors, value systems, concerns, motivations, aspirations, cultures and lifestyles was gathered through phone and e-mail interviews. Th is article is not intended to be used as a comprehensive scientifi c accounting of all relevant advocacy issues, and should not serve as an advocacy plan for organizations focusing on preterm birth or stillbirth. Rather, this article highlights issues and raises questions to inform the work of global stakeholders. Th e analysis and article do not refl ect the opinions or recommendations of the interviewers.

Methods
To conduct a balanced and comprehensive landscape review, interviews were conducted with a multi disciplinary sampling of representatives from a diverse number of organizations around the globe. Forty-one individuals working on issues related to preterm birth and stillbirth participated in the research interviews, including maternal, newborn and child health (MNCH) advocates and implementers; representatives from United Nations (UN) agencies; Non-Governmental Organi zations (NGOs); policymakers; academics; researchers; and private and government donors.
Together, the interviewees, located in 14 countries across six continents, off ered a global perspective to the advocacy landscape of preterm birth and stillbirth ( Figure 1).
Interviews were conducted by phone and e-mail. A complete list of interviewees is provided in Additional fi le 1.
An interview guide was developed to facilitate conversations. Using this guide, each interview was tailored to address the specifi c experience and perspective of the interview subject. Th roughout the course of the project, the researchers continually updated the guide to refl ect current events and emerging issues. Th e average interview was approximately 50 minutes long.
Th is article is based on the interviews as well as follow-up conversations and materials provided by the interviewees.

Results
Th ere is a perception that little research has been conducted about preventing preterm birth and stillbirth. Th e result is a critical knowledge gap among various audiences about the causes of preterm birth and stillbirth, as well as successful interventions and their potential impact. Consequently, it is challenging to secure fi nancial and policy support that leads to higher awareness and visibility, a unifi ed policy community, successful partnerships, consistent messaging, increased funding, and, ultimately, reduction of these major global health crises.

Lack of knowledge about the magnitude and impact of preterm birth and stillbirth
Th is fi rst section explores the three most frequently referenced challenges to a successful advocacy program: • Th e lack of evidence-based knowledge (data) about the magnitude and impact of preterm birth and stillbirth • Th e lack of awareness and understanding of preterm birth and stillbirth • Th e lack of low-cost, eff ective prevention methods and interventions for preterm birth and stillbirth

The problem of data on preterm birth and stillbirth
Country-level data on the prevalence and causes of preterm birth and stillbirth are largely unavailable and inadequate. Interviewees agree the lack of data greatly impedes eff orts to get preterm birth and stillbirth on the global health agenda: Interviewees also identifi ed important challenges in collecting reliable data in HICs.
• Because there are no national or international standards for reporting preterm births or stillbirths or for registries themselves, diff erent information-and diff erent levels of information-is recorded in diff erent places, creating an inadequate and inconsistent database of information. • In order to create an international standard for reporting preterm births and stillbirths, international global health and government leaders must come to a consensus on some of the questions posed by some of our interviewees: -What are the rights of a stillborn? -Should stillbirths receive a birth certifi cate, a death certifi cate, or neither? -When a preterm baby or stillbirth is delivered, what is the standard set of data about the mother's background and health that should be recorded? -Are there any environmental factors that should be recorded? Interviewees broadly agreed that the lack of data-such as statistics, causes, and benchmark reports-is the main reason that countries, regardless of geographic location and GDP, have not made preterm birth and stillbirth priorities. Th e lack of data leaves important questions unanswered for policymakers and funders: • What is the magnitude of these issues? • What are the causes of these issues?
• What can we do about these issues? • What are the costs and cost savings associated with addressing these issues? One interviewee refl ected on her government: "I think that principally our government hasn't done much because they don't know the magnitude of the problems, and if they know the magnitude, they don't know what to do. " Bertha Pooley, M.P.H. Save the Children, Bolivia Another interview participant noted that advocates in this area can learn from similar eff orts, particularly around neonatal deaths, where there have been similar challenges in lack of routine data collection and social taboos in mourning. Th e issue of newborn health is rising in importance on the global health agenda-not necessarily because of more data, but because of convincing systematic global estimates of numbers and causes of death, clearly framed links to the MDGs and a strong consensus on doable interventions:

No existing metrics on the economic and societal impacts of preterm birth and stillbirth
While estimates of the magnitude of preterm birth and stillbirth do exist, these estimates are not the reliable numbers that advocates need in order to obtain funding for programmatic change. However, there are other ways to measure the impact, especially the economic and social impacts, of preterm birth and stillbirth. Th e results of which could be eff ectively used to raise awareness of the issues and advocate for resources or funding.
Interview participants noted that the lack of information on the economic burden of preterm birth and stillbirth-a burden shared by governments, businesses and families-is debilitating, and that costing studies would be a very useful tool for advocates approaching policymakers and funders. Interviewees referenced the economic burden associated with the following list: • Preterm birth -Delivering and keeping preterm babies alive -Th e potential long-term health consequences of preterm babies (health, education, etc.) -Women opting out of the workforce to take care of babies with health problems as a result of preterm birth -Additional cost of closer scrutiny to future pregnancies after a preterm birth • Stillbirth -Lost work days of mothers and fathers grieving for their stillbirths -Mental health and grief counseling -Women no longer participating in the workforce due to complications with pregnancy that can be avoided with prenatal care -Additional cost of closer scrutiny to future pregnancies after the delivery of a stillbirth Multiple experts indicated that because the majority of policymakers are men, hard numbers resonate more with topics like maternal health, where it might be harder to relate to personal stories about the plight and emotional burden of preterm birth and stillbirth for women and families. As Jill Sheffi eld stated about advocating to the G8 for maternal health funding:

"Th e people who make decisions about the [allocation] of resources need [to know about] the economic impact [those resources and funds will have on the problem]. "
Jill Sheffi eld Family Care International Interviewees also reported the social and emotional impact that preterm birth and stillbirth have on families and communities: • Preterm birth -Th e emotional and fi nancial strain that can be put on a family by the birth and the subsequent health conditions of a preterm baby -Th e integration issues a preterm child, enduring physical or learning disabilities, may face later in life • Stillbirth -Th e psychological and emotional burden on families having experienced stillbirth -Th e repercussions that having grief-stricken, anxious parents can have on siblings of a stillbirth. Because a stillbirth does not result in a baby needing care, multiple interviewees suggested that the public Sather et al. BMC Pregnancy and Childbirth 2010, 10(Suppl 1):S5 http://www.biomedcentral.com/1471-2393/10/S1/S5 health burden of stillbirth is diffi cult for some policymakers and funders to understand-and therefore to allocate resources. As such, it will be important to explore and cost out the social impact of stillbirth to illustrate the public health burden of this issue.
Th e lack of knowledge about preterm birth and stillbirth-promulgated by absent data and assessments of their economic and societal impact-has meant few opportunities for advocates to raise awareness of these issues.

Lack of awareness and understanding of preterm birth and stillbirth Limited awareness of the impact of preterm birth and stillbirth
Th ere are varying opinions on the degree to which diff erent audiences-the healthcare community, policymakers, donors, the general public, and others-are aware of preterm birth and stillbirth as major health issues. However, there is general consensus that awareness and knowledge are sparse and incomplete, suggesting a long and important road ahead for advocacy and awareness-raising eff orts.
United States-based physicians and researchers reported a signifi cant amount of research being conducted on preterm birth and stillbirth, and that these issues are priorities for obstetrician-gynecologists, neonatologists and pediatricians in HICs. According to these interviewees: • In HICs preterm birth receives far more attention than stillbirth, even within the medical community, as it is increasingly viewed as a public health burden with economic repercussions.

Cultural nuances and perceptions surrounding preterm birth and stillbirth
In LMICs, long-standing cultural misconceptions concern ing preterm birth and stillbirth have perpetuated false information and beliefs, especially at the community level. Based on the experience of health campaigns and other similar advocacy eff orts, these cultural beliefs, varying from country to country, will have to be factored into any successful advocacy plan (Th eresa Shaver -Preterm birth or stillbirth is perceived as the mother's fault, which leads to feelings of shame and remorse for women. • Misconceptions related to science, medicine, and development -Stillbirths are like miscarriages-some believe that stillbirths do not have the same standing as babies who are born alive. -Some health offi cials in LMICs believe that preterm babies and low birth weight babies are the same. While most HICs diff erentiate gestational age from birth weight, this is not the case yet for many in international health circles, pointing to a need for knowledge and education so that preterm birth rates can be reported accurately, and the right interventions can be sought for both preterm birth and stillbirth. -In certain countries preterm babies are abandoned-especially girls-when the costs to treat medical problems that result from a preterm birth are worth more than the baby's life itself to the family. Also, families in some countries assume preterm babies will always be weak and do not know that with proper care, preterm babies can thrive. -When preterm babies survive a number of days or reach certain milestones, they are perceived to be "in the clear" without future medical needs. Th is notion is often perpetuated by news stories of miracle babies and by physicians failing to mention the long-term consequences a preterm baby may endure (Simin Taavoni, M.Sc., Iran University of Medical Sciences). Stillbirth is too unbearable for some organizations (e.g., private sector partners) to associate with, and preterm birth is an easier cause to advocate for because it still results in a baby that needs ongoing treatment and assistance, and not in a death. Th ere is also a perception that there are little or no consequences on a baby's health and development if the delivery is scheduled several weeks early via C-section for the mother's convenience-a trend that is growing rapidly in HICs.

Tailored approach needed for successful advocacy
As the examples illustrate, interview participants fi rmly believe that no country is the same when it comes to cultural nuances and perceptions surrounding maternal health, childbearing, newborn health, and other related issues. For successful advocacy, cultural nuances and perceptions must be closely examined and eff orts must be tailored and adapted for each country and implemented by actors who will be cognizant of the cultural sensitivities at play (Femi Kuti, M.B.B.S, F.R.C.O.G., Obafemi Awolowo University, Nigeria). As one participant stated, this will be a matter of examining: "…the major issues for each country…rather than [taking] a global perspective. " Marian Sokol, Ph.D., M.P.H.

First Candle
To dispel some of the false cultural notions that are associated with preterm birth and stillbirth, interviewees suggest that advocates will need to build strategies based on reliable global, regional, and local data that are not available at this time. Th e lack of knowledge about the magnitude and impact of preterm birth and stillbirth, and the ensuing lack of awareness and understanding globally, remain some of the largest obstacles to conducting successful advocacy eff orts. Th e advocacy challenge that must be resolved is not only quantifying the magnitude and the impact of preterm birth and stillbirth, but also presenting low-cost, eff ective interventions: "…showing what potential impact those simple interventions could have on the problem […] that's the most powerful thing that's needed. " Brian Hansford United Nations Children's Fund (UNICEF) In order to achieve this, one of the most important goals for preterm birth and stillbirth advocates will be to research and identify interventions that meet four key criteria: • Low-cost • Eff ective • Scalable • High impact Interviewees agreed that as of yet, there is no single and straightforward intervention or package of interventions for preterm birth and stillbirth that meet all of these criteria. As one interviewee acknowledged, policymakers and funders may recognize that preterm birth and stillbirth are important issues, but they do not have a clear, low-cost and scalable solution comparable to those of diarrheal disease, pneumonia and diseases requiring antibiotics or vaccines (Bertha Pooley, M.P.H., Save the Children Bolivia). While the eff ectiveness of Kangaroo Mother Care was referenced by multiple interview par tici pants, several also noted that it is not an intervention that can be used in isolation. Multiple interviewees reported that preterm birth and stillbirth are indicators for maternal health, and that maternal health, in turn, can be considered an indicator for the strength, eff ectiveness and capacity of a country's health system. A high number of preterm births and stillbirths in LMICs-many of the latter happening at birth-could be prevented if women had better access to regular care and quality prenatal care, and had skilled atten dants or access to a health facility at delivery in the event of a labor complication. Th ere is a growing consensus that a high number of preterm births resulting in newborn deaths could be prevented by home and community-based newborn care that includes preventing or treating neonatal infections (Abhay Bang, MD, MPH, Director, SEARCH).

Lack of simple, cost-eff ective interventions for preterm birth and stillbirth
Th  Interview participants across sectors identifi ed several advocacy opportunities for advocates, including GAPPS, its partners, and like-minded organizations working to place preterm birth and stillbirth on the global health agenda. In addition, participants from Save the Children, UNICEF, March of Dimes and White Ribbon Alliance shared best practices from their experience conducting successful, high-visibility MNCH advocacy campaigns.

Linking preterm birth and stillbirth to the Millennium Development Goals (MDGs)
Without addressing preterm birth and stillbirth, MDG 4 will not be achieved, as preterm birth is a primary cause of neonatal death. In addition, investing in interventions to prevent stillbirth would align with and support the reduction of maternal mortality and neonatal death, Another participant explained that donors who fund MNCH programs tend to focus either more on child health (e.g., United States, Canada) or maternal health (e.g., Netherlands, Sweden, UK), leaving room for advocates to link preterm birth and stillbirth to MDGs 4 and 5 and promote a continuum of care (Helga Fogstad, M.H.A., NORAD).
With regard to stillbirth in particular, a participant noted that there is enormous ground to be gained by linking stillbirth to maternal health outcomes: "…advocates might consider linking preterm birth advocacy to infant and child health, and linking stillbirth explicitly to maternal health, as stillbirth is often assumed to be an indicator of poor maternal health. " Ann Starrs, M.P.A. Family Care International A question for preterm birth and stillbirth advocates is: "How do you create a framework that links […] preterm birth and stillbirth to overall child survival goals, so that by having a campaign dedicated to preterm birth and stillbirth, you are adding to the conversation about the funding, the public awareness of the broader maternal and child health MDGs and goals that people have had some focus on. " Scott Jackson, M.B.A., C.F.R.E. PATH Th is framework presents advocates with a unique opportunity to advocate for resources and funding, within the context of achieving MDGs 4 and 5, aimed at preventing preterm birth and stillbirth.

Adding preterm birth and stillbirth to larger global health discussions
Th e majority of interview participants for this research do not view preterm birth and stillbirth as "stand-alone" issues. Rather, each is intimately nestled into a larger

Presenting a united voice for preterm birth and stillbirth
Along these same lines, interview participants identifi ed the need to bring together diff erent sectors working across the many aspects of MNCH to have a unifi ed voice on preterm birth and stillbirth. For example, Occupational Safety and Hazard offi ces-which exist in many countries and are perhaps not obvious partners at fi rst glance-can play an important role in LMICs by regulating work conditions to limit adverse outcomes for mothers (Naomi Cassirer, Ph.D., International Labour Organization). Or, in many countries, funds for MNCH programming are held by multiple entities: both Ministries of Health and Ministries of Finance, but also ministries dealing with women and family, nutrition, or infrastructure. Th ere is an opportunity to convene these allies from across many diff erent sectors and advocate in a united voice.
Th ere is also an opportunity for organizations working on diff erent aspects of preterm birth and stillbirthresearch, advocacy and implementation, for example-to convene and learn about eff orts and initiatives being carried out and commit to working as a more cohesive, multi-disciplinary entity. When asked who they believed are the leaders on preterm birth and stillbirth, interviewees most frequently identifi ed organizations in their own fi elds or within their own countries and regions. Th is said, some marked trends appeared, including: • WHO and UNICEF were frequently recognized as leading authorities for global data and statistics • Th e International Stillbirth Alliance was often referred to by interviewees as the fi rst body to have started an global conversation about stillbirth • First Candle, March of Dimes, Save the Children, and White Ribbon Alliance were the most frequently named organizations for advocacy activities Th ere is a visible opportunity for organizations across spanning sectors and disciplines to convene and synchronize eff orts to and elevate the issues of preterm birth and stillbirth in a united voice.

Illuminating the human face on the issues
While illustrations of the global economic and social impact of preterm birth and stillbirth have the potential to resonate loudly with funders and policymakers, the sharing of personal stories can also be a powerful and eff ective approach to raising awareness on these issues, especially stillbirth. Th e best advocates for resources to prevent stillbirth can be the parents who have experienced this tragedy and can speak to its impact on their lives.

Identifying and engaging champions
Several interview participants commented on the important role that champions can play in garnering visibility for an issue. One interviewee specifi cally referenced political leaders, fi rst ladies, queens, actors, and women who have had a personal experience as potentially powerful ambassadors for the issues of preterm birth and stillbirth (Ana Langer, M.D., Engender Health). Multiple participants referenced Sarah Brown's work as a Global Patron of the White Ribbon Alliance as a model case study. Cultivating a relationship with a champion for preterm birth and stillbirth and building a successful campaign around their stories may provide an excellent opportunity for advocates to eff ectively reach media, policymakers, funders, the medical community and the general public to elevate these issues.
With an eye on 2015, there is a lot of activity and momentum in the global health and the MNCH community and advocates have an unprecedented opportunity to complement and strengthen existing eff orts.

Issues for consideration
While there is a range of opinion among the interview participants about the knowledge and awareness of the impact of preterm birth and stillbirth, there is general consensus that raising awareness and advocating for these issues has been diffi cult and has been an obstacle to the development of scalable, cost-eff ective interventions. To that end, several key questions were raised throughout the interviews, and several are fl agged here for consideration: • Th e challenge of creating an advocacy and messaging framework for preterm birth and stillbirth within the existing MNCH and MDG frameworks: messaging for MNCH and the MDGs are already established. A smart strategy is needed to create a framework for preterm birth and stillbirth within these two existing frameworks so as not to compete, but rather, add to the conversation. • Consistency of messaging around preterm birth: Because of the complexity of the issue and potential interventions, existing preterm birth advocacy messages can be at cross purposes: currently, one set of messages focuses on provision of proper care to preterm newborns so that they can thrive after birth; another highlights prevention in order to avoid a lifetime of health and societal challenges that are costly and consume vast resources to address. • Th e importance of prioritizing interventions: Interview participants agreed that there is no consensus on which interventions should be used, especially in LICs. Furthermore, most agree that there needs to be a shift toward more preventive interventions but that this has not yet been addressed by the global health community in a constructive way. • Th e need to come to consensus on numbers: Th e research, medical, global health and NGO communities must come to agreement on the preterm birth and stillbirth estimates to use in messaging and advocacy materials. Without consistent numbers, it will be extremely diffi cult to convey a clear and powerful message to policymakers and funders.

Conclusion
According to interview participants across sectors and in diff erent areas of the world, there is broad acknowledgement of signifi cant scientifi c, policy and advocacy knowledge gaps on the issues of preterm birth and stillbirth. Interviews with a diverse sampling of representatives from the nonprofi t sector, non-governmental organizations, UN agencies, global health organizations and others revealed three major challenges to successful advocacy eff orts on the issues of preterm birth and stillbirth: • A lack of knowledge of the magnitude and impact of preterm birth and stillbirth • A lack of understanding and awareness of the issues • A lack of eff ective, low-cost, scalable and highly impact ful interventions that take into consideration the existing cultural beliefs within each setting Th ere are, however, opportunities that exist in advocating to prevent preterm birth and stillbirth-notably an opportune timeframe with the MDGs as governments focus on achievable results; a mobilized maternal, newborn and child health community; and parent advocates who are succeeding in putting a face on the public health tragedies. Interview participants broadly acknowledge that the global stage is set for advocacy on preterm birth and stillbirth, though many questions-some diffi cultremain to be addressed.
Ethical and social justice considerations relating to preterm birth and stillbirth are discussed in the next article of this report [5]. Preceding articles in this report discuss data, discovery science, existing interventions and delivery strategies [1,6,7,8]. Th e fi nal article presents a collaborative global action agenda created by leading stakeholders [9].