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Sather et al. BMC Pregnancy and Childbirth 2010, 10(Suppl 1):S5http://www.biomedcentral.com/1471-2393/10/S1/S5

BMCPregnancy and Childbirth

RE VIE WAbstractBackground: Efforts to achieve the Millennium Development Goals (MDGs) to improve maternal and child healthcan be accelerated by addressing preterm birth and stillbirth. However, most global health stakeholders are unawareof 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 commitmentsin the discovery, development and delivery of low-cost solutions globally. Thisarticle addresses potential barriers and

opportunities to increasing global awareness and understanding.Methods: Qualitative research was conducted to analyze current knowledge, attitudes and commitments towardpreterm birth and stillbirth; identify advocacy challenges; and learn more aboutexamples of programs thatsuccessfully advocate for research and appropriate interventions. Forty-one individuals from 14 countries on sixcontinents 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) lackof awareness and understanding; and(3) lack of low-cost, effective and scalable interventions. Participants also identified advocacy opportunities. The firstof these opportunities involves linking preterm birth and stillbirth to the MDGs, adding these outcomes to broaderglobal health discussions and advocacy efforts, and presenting a united voice among advocates in the context ofbroader MNCH issues when addressing preterm birth and stillbirth. Another key opportunity is putting a human faceto these tragediessuch 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 andstrengthen efforts. Ideal championswill 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, andto identify champions for these issues, will accelerate interdisciplinary efforts to reduce these adverse outcomes. Thenext article in this report presents an overview of related ethical considerations.Global report on preterm birth and stillbirth(5 of 7): advocacy barriers and opportunitiesMegan Sather1, Anne-Vronique Fajon1, Rachel Zaentz1, Craig E Rubens*2,3, and the

GAPPS Review GroupBackground


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Sather et al. BMC Pregnancy and Childbirth 2010, 10(Suppl 1):S5 Page 2 of 10http://www.biomedcentral.com/1471-2393/10/S1/S5

HICsdespite having health systems with more resourcesto devote to improving maternal, newborn and childhealth outcomes [4].

Despite the magnitude of these public health burdens,many causes of both preterm birth and stillbirth remainlargely unknown. While research has been undertaken inHICs, no effective interventions have been identifi ed toprevent preterm birth. Additionally, there is a lack ofsystematic evaluations of solutions to reduce the burdensof both outcomes, particularly in LMICs. Few believeenough resources have been allocated to thoroughlyresearch these issues.

Raising awareness and advocating for these issues has

been difficult because of the lack of knowledge about themagnitude of the health, economic, and social impacts ofpreterm birth and stillbirth. The lack of low-cost, scalableinterventions with proven impact for low-resourcesettings remains a barrier to advocating for moreresources and funding.

The interviews conducted for this article provideinsight into current attitudesand commitments ofglobal health leaders and organizations, fi nancialpartners, researchers, healthcare practitioners andother key stakeholders. This will enable advocates toexamine the best strategiesto implement successful,

sustained advocacy efforts to prevent preterm birth andstillbirth.

Focus of article

This article summarizes qualitative research on advocacyissues relating to global preterm birth and stillbirth. Th eresearch sought to answer the following questions:

What is the extent of knowledge on preterm birth andstillbirth?Who has made these issues priorities, and why?What has prevented governments and organizationsfrom making them a priority?What would drive future commitment and focus?What are the advocacy elements of successful pro gramsworking on these issues?What are the main challenges to conducting pretermbirth and stillbirth advocacy?Information on attitudes, behaviors, value systems,concerns, motivations, aspirations, cultures and lifestyles

was gathered through phone and e-mail interviews. Th isarticle is not intended to be used as a comprehensivescientific accounting of all relevant advocacy issues, and


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should not serve as an advocacy plan for organizationsfocusing on preterm birth or stillbirth. Rather, this articlehighlights issues and raises questions to inform the workof global stakeholders. The analysis and article do notreflect the opinions or recommendations of theinterviewers.

Methods

To conduct a balanced and comprehensive landscapereview, interviews were conducted with a multi disciplinarysampling of representatives from a diversenumber of organizations around the globe. Forty-oneindividuals working on issues related to preterm birthand stillbirth participated in the research interviews,including maternal, newborn and child health (MNCH)advocates and implementers; representatives from UnitedNations (UN) agencies; Non-Governmental Organizations(NGOs); policymakers; academics; researchers; and

private and government donors.

Together, the interviewees, located in 14 countriesacross six continents, offered a global perspective to theadvocacy landscape of preterm birth and stillbirth(Figure 1).

Interviews were conducted by phone and e-mail. Acomplete list of interviewees is provided in Additionalfi le 1.

An interview guide was developed to facilitate conversations.Using this guide, each interview was tailored toaddress the specific experience

and perspective of theinterview subject. Throughout the course of the project,the researchers continually updated the guide to refl ectcurrent events and emerging issues. Th e averageinterview was approximately 50 minutes long.

This article is based on the interviews as well asfollow-up conversations and materials provided by theinterviewees.

Results

There is a perception that little research has beenconducted about preventing preterm birth and stillbirth.The result is a critical knowledge gap among variousaudiences about the causes of preterm birth and stillbirth,as well as successful interventions and their potentialimpact. Consequently, it is challenging to secure fi nancialand policy support that leads to higher awareness andvisibility, a unified policy community, successfulpartnerships, consistent messaging, increased funding,and, ultimately, reduction of these major global healthcrises.

Challenges to advocacy

Lack of knowledge about the magnitude and impact ofpreterm birth and stillbirth


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Th is first section explores the three most frequentlyreferenced challenges to a successful advocacy program:

The lack of evidence-based knowledge (data) about themagnitude and impact of preterm birth and stillbirth The lack of awareness and understanding of preterm

birth and stillbirth The lack of low-cost, effective prevention methods andinterventions for preterm birth and stillbirth


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Figure 1. Geographic span of research interviews.I think the biggest thing thats going to drivecommitment and focus is to havesolid data on the

magnitude of the problemsupported by doableinterventions that are currently availableand showingthe potential impact [of] those simple interventions.

Mark Young, M.D., MHScUnited Nations Childrens Fund (UNICEF)

The problem of data on preterm birth and stillbirth

Country-level data on the prevalence and causes ofpreterm birth and stillbirth are largely unavailable andinadequate. Interviewees agree the lack of data greatlyimpedes eff orts to get preterm birth and stillbirth on the

global health agenda:

if this information was consistently there every time youtalk about maternal or infant mortality then the issuewould get the visibility and the attention that it needs.

Nils Daulaire, M.D., M.P.H.Global Health Council

a lack of awareness and education about these deathshas hampered prevention efforts. In addition, there is aneed for better data collection to help identify ways toprevent these deaths.

Senator Frank R. Lautenberg, D-NJUnited States Senate

Interview participants reported the following problemswith data collection:

Preterm births and stillbirths are largely under-reportedwhether in HICs or LMICs.In most LMICs, health systems do not have theinfrastructure and capacity to support the reporting ofhealth data, especially on preterm birth and stillbirth.Many women in rural settings do not deliver infacilities or with skilled attendantsif a baby is pre-term or stillborn, no formal record is kept. There is often stigma associated with stillbirths,sowomen and families may keep them secret. As such:many stillbirths [and preterm births] go undetectedand dont even become part of the statistics.

Scott Jackson, M.B.A., C.F.R.E.PATH

Interviewees also identified important challenges incollecting reliable data in HICs.


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Because there are no national or international standardsfor reporting preterm births or stillbirths or forregistries themselves, diff erent informationanddifferent levels of informationis recorded in diff erentplaces, creating an inadequate and inconsistent database

of information.In order to create an international standard for reportingpreterm births and stillbirths, international globalhealth and government leaders must come to aconsensus on some of the questions posed by some ofour interviewees:


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What are the rights of a stillborn?Should stillbirths receive a birth certifi cate, a

death certificate, or neither?When a preterm baby or stillbirth is delivered,what is the standard set of data about the mothersbackground and health that should be recorded? Are there any environmental factors that shouldbe recorded?Interviewees broadly agreed that the lack of datasuchas statistics, causes, and benchmark reportsis the mainreason that countries, regardless of geographic locationand GDP, have not made preterm birth and stillbirthpriorities. The lack of dataleaves 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 withaddressing these issues?One interviewee reflected on her government:I think that principally our government hasnt done muchbecause they dont know the m

agnitude of the problems, andif they know the magnitude, they dont know what to do.

Bertha Pooley, M.P.H.Save the Children, Bolivia

Another interview participant noted that advocates inthis area can learn from similar eff orts, particularlyaround neonatal deaths, where there have been similarchallenges in lack of routine data collection and socialtaboos in mourning. The issue of newborn health is risingin importance on the global health agendanotnecessarily because of more data, butbecause ofconvincing systematic global estimates of numbers andcauses of death, clearly framed links to the MDGs and astrong consensus on doable interventions:

[The issues of stillbirth and preterm birth] do not have towait decades for perfect dataimproved estimates andclear communication of the relevance of these for existingnational goals and program investment is possible andcrucial.

Joy Lawn, BMedSci, M.B. B.S., M.R.C.P. (Paeds), M.P.H.Save the Children, Saving Newborn Lives

No existing metrics on the economic and societal impacts ofpreterm birth and stillbirth


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While estimates of the magnitude of preterm birth andstillbirth do exist, these estimates are not the reliablenumbers that advocates need in order to obtain fundingfor programmatic change. However, there are other waysto measure the impact, especially the economic andsocial impacts, of preterm birth and stillbirth. Th e results

of which could be effectively used to raise awareness ofthe issues and advocate for resources or funding.

Interview participants noted that the lack of informationon the economic burden of preterm birth andstillbirtha burden shared by governments, businessesand familiesis debilitating, and that costing studieswould be a very useful tool for advocates approachingpolicymakers and funders. Interviewees referenced theeconomic burden associated with the following list:

Preterm birthDelivering and keeping preterm babies alive The potential long-term health consequences of

preterm babies (health, education, etc.)Women opting out of the workforce to take careof babies with health problems asa result ofpreterm birthAdditional cost of closer scrutiny to futurepregnancies after a preterm birth Stillbirth Lost work days of mothers and fathers grievingfor their stillbirths

Mental health and grief counselingWomen no longer participating in the workforcedue to complications with pregnancy that can beavoided with prenatal care Additional cost of closer scrutiny to futurepregnancies after the delivery of a stillbirthMultiple experts indicated that because the majority ofpolicymakers are men, hard numbers resonate more withtopics like maternal health, where it might be harder torelate to personal stories about the plight and emotionalburden of preterm birth and stillbirth for women andfamilies. As Jill Sheffield stated about advocating to theG8 for maternal health funding:The people who make decisions about the [allocation] ofresources need [to know about] the economic impact[those resources and funds will have on the problem].

Jill Sheffi eldFamily Care International

Interviewees also reported the social and emotionalimpact that preterm birth and stillbirth have on familiesand communities:

Preterm birth

The emotional and financial strain that can be puton a family by the birth and the subsequent healthconditions of a preterm baby


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The integration issues a preterm child, enduringphysical or learning disabilities, may face later in life Stillbirth The psychological and emotional burden onfamilies having experienced stillbirth The repercussions that having grief-stricken,anxious parents can have on siblings of a stillbirth.

Because a stillbirth does not result in a baby needingcare, multiple interviewees suggested that the public


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health burden of stillbirth is diffi cult for somepolicymakers and funders to understandand thereforeto allocate resources. As such, it will be important toexplore and cost out the

social impact of stillbirth toillustrate the public health burden of this issue.

The lack of knowledge about preterm birth andstillbirthpromulgated by absent data and assessmentsof their economic and societal impacthas meant fewopportunities for advocates to raise awareness of theseissues.

Lack of awareness and understanding of preterm birth andstillbirth

Limited awareness of the impact of preterm birth and stillbirth

There are varying opinions on the degree to whichdifferent audiencesthe healthcare community, policy-makers, donors, the general public, and othersareaware of preterm birth and stillbirth as major healthissues. However, there is general consensus thatawareness and knowledge are sparse and incomplete,suggesting a long and important road ahead for advocacyand awareness-raising efforts.

United States-based physicians and researchers reporteda significant amount of research being conducted onpreterm birth and stillbirth, and that these issues are

priorities for obstetrician-gynecologists, neonatologistsand pediatricians in HICs. According to theseinterviewees:

In HICs preterm birth receives far more attention thanstillbirth, even within the medical community, as it isincreasingly viewed as a public health burden witheconomic repercussions.While there are studies on the causes of preterm birth,none have yielded conclusive findings to advance theprevention of preterm birth. Preterm birth ratescontinue to rise in both HICs and LMICs (Uma Reddy,M.D., M.P.H., NICHD). Though researchers have studied several therapies thatcould be used to prevent preterm birth, progesteroneremains the only promising intervention at this time.(Uma Reddy, M.D., M.P.H., NICHD)Others reported the following:

The general public typically becomes aware of pretermbirth and stillbirth through personal stories: givingbirth toor having an acquaintance deliverapreterm baby or a stillborn.

Few audiences, including the medical community inHICs and LMICs, fully understand the link betweenpreterm birth and all of the associated long-termhealth consequences.


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Though people acknowledge the frailty of apreterm baby and potential complications thatmay ensue, they do not always establish linkagesbetween preterm birth and potential reper cussionssuch as cerebral palsy, vision problems, learningdisabilities and others.

There existsa discrepancy in levels of awarenessbetween HICs and LMICs.Preterm birth and stillbirth are better known andrecognized in countries like the United States, forexample, where the medical community receivescontinuous training and organizations like theMarch of Dimes and First Candle conduct publiceducation campaigns and political advocacy.Preterm birth and stillbirth are relatively

unknown in LMICs where preterm births andstillbirths are unreported, and few countries havestillbirth reporting systems.Cultural nuances and perceptions surrounding preterm birth andstillbirth

In LMICs, long-standing cultural misconceptionsconcern ing preterm birth and stillbirth have perpetuatedfalse information and beliefs, especially at the communitylevel. Based on the experience of health campaigns andother similar advocacy efforts, these cultural beliefs,varying from country to country, will have to be factoredinto any successful advocacy plan (Th eresa Shaver,

M.P.H., R.N.M., White Ribbon Alliance).

Interviewees identifi ed numerous cultural nuances andperceptions about preterm birth and stillbirth. Below aresome that could present challenges to advocacy eff orts:

Misconceptions about the prevention of preterm birthand stillbirthPreterm birth and stillbirth are inevitableexperts referred specifically to the deep sense offatalism, hopelessness and defeat felt in manyLMIC societies. In fact, in certain countries,babies are not named until they have survivedtheir first year, given the high rates of neonatalmortality. In one interviewees words, there isoften a sense that:this is the way its always been and its the way italways will be.

Nils Daulaire, M.D., M.P.H.Global Health Council

Stillbirth is sometimes seen as natures way of

interveningwhen a baby is stillborn, somebelieve this means it was not meant to be born atthat time, or had a physical or mental


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malformation. (Pang Runyan, M.D., M.P.H, PekingUniversity).Societal treatment of preterm birth and stillbirthStillbirths are kept secret and are not to bediscussed or mourned publicallyfamilies in

LMICs (and in many HICs as well) view stillbirthas a taboo subject.


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Stillbirths are hidden. We know very little. Itskept quiet.

Vinod Paul, M.D., Ph.D., F.A.M.S., F.I.A.P., F.N.N.F.All India Institute of Medical Sciences

in many cultural situations there is a generalmindset not to discuss stillbirth inan openfashion.

George Little, M.D.Dartmouth Medical School

Preterm birth or stillbirth is perceived as the

mothers fault, which leads to feelings of shameand remorse for women.

Misconceptions related to science, medicine, anddevelopmentStillbirths are like miscarriagessome believethat stillbirths do not have the same standing asbabies who are born alive.Some health officials in LMICs believe thatpreterm babies and low birth weight babies arethe same. While most HICs diff erentiategestational age from birth weight, this is not the

case yet for many in international health circles,pointing to a need for knowledge and educationso that preterm birth rates can be reportedaccurately, and the right interventions can besought for both preterm birth and stillbirth.In certain countries preterm babies areabandonedespecially girlswhen the costs totreat medical problems that result froma pretermbirth are worth more than the babys life itself tothe family. Also, families in some countriesassume preterm babies will always be weak anddo not know that with proper care, pretermbabies can thrive.When preterm babies survive a number of days orreach certain milestones, they are perceived to bein the clear without future medical needs. Th isnotion is often perpetuated by news stories ofmiracle babies and by physicians failing tomention the long-term consequences apretermbaby may endure (Simin Taavoni, M.Sc., IranUniversity of Medical Sciences). Stillbirth is toounbearable for some organizations (e.g., privatesector partners) to associate with, and pretermbirth is an easier cause to advocate for because it

still results in a baby that needs ongoing treatmentand assistance, and not in a death.There is also a perception that there are little or no


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consequences on a babys health and development if thedelivery is scheduled several weeks early via C-section forthe mothers conveniencea trend that is growingrapidly in HICs.

Tailored approach needed for successful advocacy

As the examples illustrate, interview participants fi rmlybelieve that no country is the same when it comes tocultural nuances and perceptions surrounding maternalhealth, childbearing, newborn health, and other relatedissues. For successful advocacy, cultural nuances andperceptions must be closely examined and eff orts mustbe tailored and adapted for each country andimplemented by actors who will be cognizant of thecultural sensitivities at play (Femi Kuti, M.B.B.S,F.R.C.O.G., Obafemi Awolowo University, Nigeria). Asone participant stated, thiswill 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 areassociated with preterm birth and stillbirth, intervieweessuggest that advocateswill need to build strategies basedon reliable global, regional, and local data that are notavailable at this time.

The lack of knowledge about the magnitude and impactof preterm birth and stillbi

rth, and the ensuing lack ofawareness and understanding globally, remain some ofthe largest obstacles to conducting successful advocacyeff orts. The advocacy challenge that must be resolved isnot only quantifying the magnitude and the impact ofpreterm birth and stillbirth, but also presenting low-cost,eff ective interventions:showing what potential impact those simpleinterventions could have on the problem [] thats themost powerful thing thats needed.

Brian HansfordUnited Nations Childrens Fund (UNICEF)

Lack of simple, cost-effective interventions for preterm birthand stillbirth

If they cant propose coherent solutions, thenpolicymakers are going to move on to the next issue. Th eydrather put their resources into something they know theycan do something about.

Jeremy Schiff man, Ph.D.Syracuse University

Assessing the impact and magnitude of preterm birthand stillbirth is an important piece of the puzzle increating a successful advocacy roadmap, though as many


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pointed out, it cannot be the whole puzzle:

For governments and organizations to make this apriority, [] providing them with some examples of whatcan actually be done is going to make a huge diff erence.

O. Massee Bateman, M.D., D.T.M&H.

Save the Children


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In order to achieve this, one of the most important goals forpreterm birth and stillbirth advocates will be to researchand identify interventions that meet fourkey criteria:

Low-cost Eff ective Scalable High impactInterviewees agreed that as of yet, there is no single andstraightforward intervention or package of interventions forpreterm birth and stillbirth that meet all of these criteria. Asone interviewee acknowledged, policymakers andfundersmay recognize that preterm birth and stillbirth areimportant issues, but they do not have a clear, low-cost andscalable solution comparable to those of diarrheal disease,pneumonia and diseases requiring antibiotics or vaccines(Bertha Pooley, M.P.H.,Save the Children Bolivia). Whilethe effectiveness of Kangaroo Mother Care was r

eferencedby multiple interview partici pants, several also noted that itis not an intervention that can be used in isolation.Multiple interviewees reported that preterm birth andstillbirth are indicators for maternal health, and thatmaternal health, in turn, can be considered an indicator forthe strength, effectiveness and capacity of a countrys healthsystem. A high number of preterm births and stillbirths inLMICsmany of the latter happening at birthcould beprevented if women had better access to regular care andquality prenatal care, and had skilled atten dants or access toa health facility at delivery in the event of a laborcomplication. There is a growing consensus that a highnumber of preterm births resulting in newborn deathscould be prevented by home and community-basednewborn care that includes preventing or treating neonatalinfections (Abhay Bang, MD, MPH, Director, SEARCH).

These interventions, while taken for granted in theWestern world, are not simple and low-cost in LMICs,where they have major infrastructure implications:education, training, technology, and transportation,among others (Ana Langer, M.D., Engender Health andBertha Pooley, M.P.H., Save the Children, Bolivia).

Several interviewees indicated that an increased emphasison preventive interventions for preterm birth and stillbirthmay resonate with policymakers and funders(Vinod Paul,M.D., Ph.D., F.A.M.S., F.I.A.P., F.N.N.F., All India Institute ofMedical Sciences). A change in focus is needed to shift fromsaving preterm newborns to preventing preterm births andreduce the strain on countries health systems:If you increase the number of [preterm newborns] andreduce mortality, you still have not guaranteed goodhealth to mothers and children, because once a child ispreterm there is no guarantee that they will be able toactually catch up and grow up to be as robust as a childthat was carried full-term.

Joy PhumaphiWorld Bank

According to many interviewees, successful advocacyoutreach efforts to policymak

ers, thought leaders, andfunders will need to provide a defined roadmap foraction, or clear steps to creating that roadmap (Rachel


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Wilson, M.P.H., PATH). Steps may include demonstratingthe magnitude of these issues, the impact they have onsocieties and country budgets, and how allocating fundsto developing and scaling low-cost, scalable interventionscan provide an important return on investment.Advocacy should include efforts to encourage donors, theUnited Nations, and other organizations to incorporatethe scale-up of priority i

nterventions in their fundingstrategies. In other words, as one participant succinctlyexplained:

showing them it can be done. It can be done, and itdoesnt [have to] cost much.

Monir Islam, M.D., M.P.H.Making Pregnancy Safer, WHO

Opportunities for advocacy

Developing a new framework to position preterm birth andstillbirth

The following section presents the advocacy opportunitiesidentified by interview participants, including:

Linking preterm birth and stillbirth to the UnitedNations Millennium Development Goals (MDGs)Adding preterm birth and stillbirth to broader globalhealth discussions

Presenting a united voicePutting a human face on the issuesIdentifying and engaging championsI think when you can put a face [and] a name [to] areal story and present that to public policy makers,suddenly they get it and thats one of the huge []opportunities that we have now.

Marian Sokol, Ph.D., M.P.H.First Candle

Interview participants across sectors identifi ed severaladvocacy opportunities for advocates, including GAPPS,its partners, and like-minded organizations working toplace preterm birth and stillbirth on the global healthagenda. In addition, participants from Save the Children,UNICEF, March of Dimes and White Ribbon Allianceshared best practices from their experience conductingsuccessful, high-visibility MNCH advocacy campaigns.

Linking preterm birth and stillbirth to the MillenniumDevelopment Goals (MDGs)

Without addressing preterm birth and stillbirth, MDG 4will not be achieved, as preterm birth is a primary causeof neonatal death. In addition, investing in interventions


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to prevent stillbirth would align with and support thereduction of maternal mortality and neonatal death,


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thereby addressing both MDGs 4 and 5. As oneparticipant expressed, the prevention of preterm birthand stillbirth has not yetbeen recognized as crucial toachieving the MDGs (Andres de Francisco, M.D., Ph.

D.,M.Sc., D.T.M&H, Partnership for Maternal Newborn andChild Health). This said, the halfway point to 2015 haspassed, and policymakers, funders, and thought leadersacross the globe are focused on crossing the fi nish linewhile assessing what is achievable, and what is not. Asone participant said:

governments, at this point in time, are focused onMillennium Development Goal 4 and 5.

Zulfiqar Bhutta, M.B.B.S., F.R.C.P., F.R.C.P.C.H.,F.C.P.S., Ph.D.

Aga Khan University, Pakistan

Another participant explained that donors who fundMNCH programs tend to focus either more on childhealth (e.g., United States, Canada) or maternal health(e.g., Netherlands, Sweden, UK), leaving room foradvocates to link preterm birth and stillbirth to MDGs 4and 5 and promote a continuum of care (Helga Fogstad,M.H.A., NORAD).

With regard to stillbirth in particular, a participantnoted that there is enormous ground to be gained by

linking stillbirth to maternal health outcomes:advocates might consider linking preterm birthadvocacy to infant and child health, and linking stillbirthexplicitly to maternal health, as stillbirth is often assumedto 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 [] pretermbirth and stillbirth to overall child survival goals, so thatby having a campaign dedicated to preterm birth andstillbirth, you are adding to the conversation about thefunding, the public awareness of the broader maternaland child health MDGs and goals that people have hadsome focus on.

Scott Jackson, M.B.A., C.F.R.E.PATH

This framework presents advocates with a uniqueopportunity to advocate for resources and funding,within the context of achieving MDGs 4 and 5, aimed atpreventing preterm birth a

nd stillbirth.

Adding preterm birth and stillbirth to larger global health


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discussions

The majority of interview participants for this researchdo not view preterm birth and stillbirth as stand-aloneissues. Rather, each is intimately nestled into a larger

MNCH framework (though neither receives enough

visibility). Several interviewees offered that, in order toconduct the most successful advocacy effort, the existingMNCH community should be mobilized:

I would recommend that this group gets seen as anadditiveto be able to create a whole set of new materialsthat can help other people who are already advocating forthe bigger piece of the pie. To have additional stories,additional messages, additional champions to add intothe pot as opposed to carving out their own part thatmight take away from others

Rachel Wilson, M.P.H.PATH

One participant suggested that, in order to be successful,advocates would need to develop a phased approach toadvocacy, one that focuses first on raising awareness ofthe scale and impact of preterm birth and stillbirth. Withmore awareness, advocacy efforts could shift to winningpolitical support and funding to continue to identifyinterventions and solutions. (Ann Starrs, M.P.A., FamilyCare International)

Presenting a united voice for preterm birth and stillbirth

Along these same lines, interview participants identifi edthe need to bring together different sectors working acrossthe many aspects of MNCH to have a unifiedvoice onpreterm birth and stillbirth. For example, OccupationalSafety and Hazard officeswhich exist in many countriesand are perhaps not obvious partners at fi rst glancecanplay an important role in LMICs by regulating workconditions to limit adverse outcomes for mothers (NaomiCassirer, Ph.D., International Labour Organization).

Or, in many countries, funds for MNCH programmingare held by multiple entities:both Ministries of Health andMinistries of Finance, but also ministries dealingwithwomen and family, nutrition, or infrastructure. There is anopportunity to convene these allies from across manydifferent sectors and advocate in a united voice.

There is also an opportunity for organizations workingon different aspects of preterm birth and stillbirthresearch, advocacy and implementation, for exampletoconvene and learn about efforts and initiatives beingcarried out and commit to working as a more cohesive,multi-disciplinary entity. When asked who they believedare the leaders on preterm birth and stillbirth, intervieweesmost frequently identified organizations intheir own fi eldsor within their own countries and regions. This said, somemarked trends appeared, including:

WHO and UNICEF were frequently recognized as


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leading authorities for global data and statistics The International Stillbirth Alliance was often referredto by interviewees as the first body to have started anglobal conversation about stillbirth


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First Candle, March of Dimes, Save the Children, andWhite Ribbon Alliance were the most frequently

named organizations for advocacy activitiesThere is a visible opportunity for organizations acrossspanning sectors and disciplines to convene andsynchronize efforts to and elevate the issues of pretermbirth and stillbirth in a united voice.

Illuminating the human face on the issues

While illustrations of the global economic and socialimpact of preterm birth and stillbirth have the potentialto resonate loudly with funders and policymakers, thesharing of personal stories can also be a powerful and

effective approach to raising awareness on these issues,especially stillbirth. The best advocates for resources toprevent stillbirth can be the parents who haveexperienced this tragedy and can speak to its impact ontheir lives. U.S. Representative Peter King, J.D. (R-NY)was so moved when a constituent shared her story withhim that he introduced theStillbirth Awareness andResearch Act of 2008.

Her story and the story of so many other women and theirfamilies are by far the most effective way to showlegislators that more action is necessary, especially at thefederal level.

Peter King, J.D., R-NYUnited States House of Representatives

Advocates like Marian Sokol of First Candle, VickiFlenady of the International Stillbirth Alliance, andothers confirm that parent advocates all over the worldhave been on the front lines of stillbirth advocacy eff orts,and have achieved successes thanks to their eff orts.

Parent groups like SIDS and Kids were drivers with theSIDS agenda; [] the wonderful work theyve done in thiscountry in reducing SIDS haslaid a very strongfoundation for the stillbirth initiative.

Vicki Flenady, M.Med.Sc.Centre for Clinical Studies, the Mater Mothers Hospital,Australia

Identifying and engaging champions

Several interview participants commented on theimportant role that champions can play in garneringvisibility for an issue. One interviewee specifi cally referencedpolitical leaders, first ladies, queens, actors, and

women who have had a personal experience as potentiallypowerful ambassadors for the issues of preterm birth andstillbirth (Ana Langer, M.D., Engender Health).


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Multiple participants referenced Sarah Browns work asa Global Patron of the WhiteRibbon Alliance as a modelcase study. Cultivating a relationship with a champion forpreterm birth and stillbirth and building a successfulcampaign around their stories may provide an excellent

opportunity for advocates to effectively reach media,policymakers, funders, the medical community and thegeneral public to elevate these issues.

With an eye on 2015, there is a lot of activity andmomentum in the global health and the MNCH communityand advocates have an unprecedented opportunity tocomplement 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 theimpact of preterm birth and stillbirth, there is generalconsensus that raising awareness and advocating forthese issues has been difficult and has been an obstacle tothe development of scalable, cost-eff ective interventions.To that end, several key questions were raised throughoutthe interviews, and several are flagged here forconsideration:

The challenge of creating an advocacy and messagingframework for preterm birth and stillbirth within theexisting MNCH and MDG frameworks: messaging forMNCH and the MDGs are already established. A

smart strategy is needed to create a framework forpreterm birth and stillbirth within these two existingframeworks so as not to compete, but rather, add tothe conversation.Consistency of messaging around preterm birth:Because of the complexity of the issue and potentialinterventions, existing preterm birth advocacymessages can be at cross purposes:currently, one setof messages focuses on provision of proper care topreterm newborns so that they can thrive after birth;another highlights prevention in order to avoid alifetime of health and societal challenges that are costlyand consume vast resources to address. The importance of prioritizing interventions: Interviewparticipants agreed that there is no consensus onwhich interventions should be used, especially in LICs.Furthermore, most agree that there needs to be a shifttoward more preventive interventions but that this hasnot yet been addressed by the global health communityin a constructive way. The needto come to consensus on numbers: Th eresearch, medical, global health and NGOcommunities must come to agreement on the pretermbirth and stillbirth estimates to use in messaging andadvocacy materials. Without consistent numbers, it

will be extremely difficult to convey a clear andpowerful message to policymakers and funders.Conclusion


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According to interview participants across sectors and indifferent areas of the world, there is broad acknowledgementof signifi cant scientific, policy and advocacy


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knowledge gaps on the issues of preterm birth andstillbirth. Interviews with a diverse sampling of representativesfrom the nonprofit sector, non-governmental

organizations, UN agencies, global health organizationsand others revealed three major challenges to successfuladvocacy efforts on the issues of preterm birth andstillbirth:

A lack of knowledge of the magnitude and impact ofpreterm birth and stillbirthA lack of understanding and awareness of the issuesA lack of effective, low-cost, scalable and highly

impactful interventions that take into considerationthe existing cultural beliefs within each settingThere are, however, opportunities that exist in advocatingto prevent preterm birth and stillbirthnotably anopportune timeframe with the MDGs as governmentsfocus on achievable results; a mobilized maternal, newbornand child health community; and parent advocateswho are succeeding in putting a face on the public healthtragedies. Interview participants broadly acknowledgethat the global stage is set for advocacy on preterm birthand stillbirth, thoughmany questionssome diffi cultremain to be addressed.

Ethical and social justice considerations relating topreterm birth and stillbirth are discussed in the nextarticle of this report [5]. Preceding articles in this reportdiscuss data, discovery science, existing interventionsand delivery strategies [1, 6, 7, 8]. Th e fi nal articlepresents a collaborative global action agenda created byleading stakeholders [9].

Acknowledgements

This report was supported by the Global Alliance to Prevent Prematurity andStillbirth (GAPPS), an initiative of Seattle Childrens through a grant from theBill & Melinda Gates Foundation. The advocacy review was commissionedby GAPPS and conducted by GMMB, a strategic communications firm. Wealso thank Gretchen Sorensen for her work as a liaison with this project, andCatherine Waszak for her administrative support.

This article has been published as part of BMC Pregnancy and ChildbirthVolume 10 Supplement 1, 2010. The full contents of this report are availableonline at http://www.biomedcentral.com/1471-2393/10?issue=S1. We thankall members of the GAPPS Review Group for their contributions and reviewof the seven articles in this report, and list them here in alphabetical order:Fernando C Barros, Maneesh Batra, Zulfiqar Ahmed Bhutta, Anne-VroniqueFajon, Michael G Gravett, Thomas N Hansen, Maureen Kelley, Joy E Lawn, ToniM Nunes, Craig E Rubens, Megan Sather, Cynthia Stanton, Cesar G Victora, and

Rachel Zaentz.

Additional File 1


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Interview participants. Contains list of participants interviewed in this article.

Author details

1GMMB, 1010 Wisconsin Ave, NW, Suite 800, Washington, DC 20007, USA

2Global Alliance to Prevent Prematurity and Stillbirth, an initiative of SeattleChildrens, Seattle, Washington, USA3Department of Pediatrics at University of Washington School of Medicine,Seattle, Washington, USA

Authors contributions

The article was written and reviewed by MS, AF and RZ. CR helped conceiveof this article as part of a global report on preterm birth and stillbirth, andparticipated in its design and coordination.

Competing interests

The authors declare that they have no competing interests.

Published: 23 February 2010

References

1.Lawn JE, Gravett MG, Nunes TM, Rubens CE, Stanton C, and GAPPS ReviewGroup: Global report on preterm birth and stillbirth (1 of 7): Defi nitions,description of the burden and opportunities to improve data. BMCPregnancy and Childbirth 2010, 10 (Suppl 1):S1.

2.Lawn JE, Cousens S, Zupan J: 4 million neonatal deaths: when? Where?Why? Lancet 2005, 365(9462):891-900.3.Stanton C, Lawn JE, Rahman H, Wilczynska-Ketende K, Hill K: Stillbirth rates:delivering estimates in 190 countries. Lancet 2006, 367(9521):1487-1494.4.Beck S, Wojdyla D, Say L, Betran AP, Merialdi M, Harris Requejo J, Rubens C,Menon R, Van Look P: The worldwide incidence of preterm birth: asystematic review of maternal mortality and morbidity. Bull World HealthOrgan 2010, 88(1):1-80.5.Kelley MK, Rubens CE, and the GAPPS Review Group: Global report onpreterm birth and stillbirth (6 of 7): ethical considerations. BMC Pregnancyand Childbirth 2010, 10 (Suppl 1):S6.6.Gravett MG, Rubens CE, Nunes TM, and GAPPS Review Group: Global reporton preterm birth and stillbirth (2 of 7): discovery science. BMC Pregnancyand Childbirth 2010, 10 (Suppl 1):S2.7.Barros FC, Bhutta ZA, Batra M, Hansen TN, Victora CG, Rubens CE, and GAPPSReview Group: Global report on preterm birth and stillbirth (3 of 7):evidence for effectiveness of interventions. BMC Pregnancy and Childbirth2010, 10 (Suppl 1):S3.8.

Victora CG, Rubens CE, and the GAPPS Review Group: Global report onpreterm birth and stillbirth (4 of 7): delivery of interventions. BMCPregnancy and Childbirth 2010, 10 (Suppl 1):S4.


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9.Rubens CE, Gravett MG, Victora CG, Nunes TM, and the GAPPS Review Group:Global report on preterm birth and stillbirth (7 of 7): mobilizing resourcesto accelerate innovative interventions. BMC Pregnancy and Childbirth 2010,10 (Suppl 1):S7.

doi:10.1186/1471-2393-10-S1-S5

Cite this article as: Sather M, et al.: Global report on preterm birth andstillbirth (5 of 7): advocacy barriers and opportunities. BMC Pregnancy andChildbirth 2010, 10(Suppl 1):S5.


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