working together for stronger, healthier babies

Chapter Programs Year-End Report 2010 working together for stronger, healthier babies

The mission of the March of Dimes is to improve the health of babies by preventing birth defects, premature birth and infant mortality.

Dear Friends April 2011 Although the economic climate led to significant fiscal constraints throughout 2010, March of Dimes chapters continued to produce successful mission programs, focusing on evidenced-based interventions to impact the health of mothers and babies. One area that received a great deal of attention this past year was the issue of elective deliveries prior to 39 weeks gestation. In 2010, the March of Dimes, California Maternal Quality Care Collaborative (CMQCC) and the California Maternal Child and Adolescent Division of the state Department of Health jointly produced a toolkit for hospitals, entitled The Elimination of Non-medically Indicated (Elective) Deliveries Before 39 Weeks Gestational Age. The March of Dimes is pleased to make this toolkit available to hospitals throughout the country to assist them in their efforts to eliminate elective deliveries prior to 39 weeks gestation. Utilizing funds available from the national office, many chapters sponsored Grand Rounds on the topic of early elective deliveries. Chapters began meeting with individual hospitals to encourage them to implement policies around this issue. Chapters also have assumed a leadership role in convening stakeholders in their communities to formulate quality improvement action plans to eliminate elective deliveries prior to 39 weeks gestation. And, along with the publication of Toward Improving the Outcome of Pregnancy III: Enhancing Perinatal Health Through Quality, Safety and Performance Initiatives in December 2010, this leadership role in perinatal quality improvement will continue to expand in 2011 and beyond. In addition to these quality improvement efforts, chapters have continued to provide education and community service programs to improve the health of mothers and babies. Some of these efforts include educating women on how to have healthy pregnancies, expanding access to prenatal care, working to reduce racial and ethnic disparities in perinatal health, and providing information, comfort and support in the event that a newborn is admitted to the neonatal intensive care unit (NICU). Another tremendous accomplishment in 2010 was the expansion of March of Dimes NICU Family Support to more than 100 hospitals offering services to more than 75,000 families. This expansion was achieved in large part through the implementation of the Hospital License Programs and NICU Family Support Centers. Thank you to all of our volunteers, chapter staff, grantees and partner organizations who helped us deliver solid mission results in 2010. I look forward to continuing our work together in the years ahead. Sincerely, Scott D. Berns, MD, MPH, FAAP Senior Vice President, Chapter Programs 1

What s Inside Introduction Chapter Programs Snapshot... page 3 Chapter Community Grants... page 4 Before Pregnancy Preconception and Interconception Care...page 7 Folic Acid Education...page 7 Project Alpha... page 8 During Pregnancy Quality Improvement...page 10 Healthy Babies are Worth the Wait...page 11 CenteringPregnancy...page 12 Mobile Health Centers...page 12 Smoking Cessation...page 13 Addressing Disparities...page 14 Becoming a Mom/Comenzando bien...page 14 Stork s Nest...page 15 The Coming of the Blessing...page 15 After Pregnancy March of Dimes Services in the NICU... page 17 Chapter Recognition Chapter of the Year Program... page 20 Program Leading Practices...page 21 For more information on any of the programs described in this report, please contact Norm Hess, Manager, Program Planning & Evaluation, at 914-997-4457 or nhess@marchofdimes.com. 2

Chapter Programs Snapshot Chapters reached more than 1,000,000 consumers and health professionals with information and services to help women have healthy pregnancies and to prevent birth defects, premature birth and infant mortality. Chapter program efforts are conducted directly by program staff and volunteers, through active partnerships with other local agencies, and through projects supported by chapter community grant funds. Chapters also may apply to other agencies or foundations for funds to support a specific project, or they may apply to the March of Dimes national office for funds to support specific types of programs, including Grand Rounds and local quality improvement initiatives. More than 80 percent of all chapter program activities were directed toward efforts to reduce premature birth. Individuals reached by topic # Reached Prematurity 833,701 Folic acid 188,096 Preventing birth defects 12,316 1,034,113 Selected Prematurity-Related Activities # Reached Prematurity Awareness Day 535,474 Other prematurity-related programs and services 208,069 Activities focused on reducing disparities in preterm birth 40,386 Quality Improvement initiatives 17,662 Preconception and interconception education and services 16,612 Activities to prevent recurrence of premature birth 6,817 CenteringPregnancy training and implementation of services 4,315 Professional education about progesterone therapy 2,872 Smoking cessation education and intervention services 1,494 Total 833,701 Source: March of Dimes Electronic Program Information Center, 2011 3

Chapter Community Grants Nearly half of all chapter community grant dollars are spent on access to prenatal care or interconception education and services. Funding from chapter community grants enhances the availability and quality of health care and prevention services for women and their babies. In all, $5.9 million was awarded by chapters to fund programs that address local perinatal needs. More than 80 percent of chapter community grant dollars were directed toward programs designed to prevent premature birth. CenteringPregnancy is an innovative, evidence-based model of group prenatal care developed and operated by the Centering Healthcare Institute. More than 20 percent of all chapter community grant funds were used to support this model, and an additional 14 percent was used to support other programs that expand access to prenatal care for pregnant women. Chapter Community Grants Overview 2006 2007 2008 2009 2010 Chapter grant funds awarded (millions) $8.3 $8.5 $8.5 $6.0 $5.9 Median chapter grant budget $92,500 $99,500 $100,000 $65,000 $54,900 Average individual chapter grant size $19,000 $19,600 $19,500 $20,800 $19,400 Prematurity-related grants awarded 84% 89% 91% 94% 81% 1 1 Fiscal constraints in 2009 and 2010 necessitated a significant reduction in chapter community grants budgets. Also, during this time, many chapters received permission to allocate a portion of their chapter community grants budget to fund their local NICU Family Support projects. 4

2010 Chapter Community Grants by Purpose Grants Amount Average percent of Amount Total CenteringPregnancy 85 $1,274,981 $15,000 21.6% Enhanced prenatal care 61 $844,867 $13,850 14.3% Interconception education/recurrence prevention 27 $792,379 $29,347 13.4% Quality improvement/late preterm birth prevention 33 $408,461 $12,378 6.9% Comenzando bien 26 $391,967 $15,076 6.6% Preconception education 34 $378,387 $11,129 6.4% Other 42 $317,727 $7,565 5.4% Outreach programs 40 $276,306 $6,908 4.7% Professional education and training 61 $257,045 $4,214 4.4% Smoking prevention/cessation 23 $238,641 $10,376 4.0% Stork s Nest 17 $161,473 $9,498 2.7% Teen pregnancy services 15 $149,100 $9,940 2.5% Sudden Infant Death Syndrome (SIDS) 13 $110,568 $8,505 1.9% Public education 30 $71,967 $2,399 1.2% Substance abuse projects 6 $60,859 $10,143 1.0% Preterm labor prevention 10 $51,225 $5,123 0.9% MCH program enrollment 5 $45,240 $9,048 0.8% Becoming a Mom 4 $35,930 $8,983 0.6% Project Alpha 6 $26,145 $4,358 0.4% Genetic services 3 $4,100 $1,367 0.1% Total 541 $5,897,368 $10,901 100% The top five purpose categories have remained relatively consistent since 2007. However, the category of Quality Improvement/Late Preterm Birth Prevention is a new category in 2010 and took the number four spot with 6.9 percent of total chapter community grant funding. 5

Before Pregnancy Chapters awarded more than $790,000 in chapter community grants for preconception and interconception programs. 6

Preconception and Interconception Care Preconception care promotes healthy pregnancies and positive birth outcomes by helping to ensure a woman is in optimum health before getting pregnant. It also helps to identify any potential risk factors and medical conditions that will require management during the pregnancy. Florida The HelpUGrow program is an interconception care program of the Healthy Start Coalition of Hillsborough County. The Florida Chapter provided grant support for this program, which focuses on improving the health of mothers who have had a baby in the NICU to improve subsequent birth outcomes. In 2010, 80 percent of program graduates and 84 percent of active participants increased the amount of days they met food pyramid guidelines based on a food log. One hundred percent of program graduates and 75 percent of active participants increased physical activity as measured by a pedometer and log. Eighty percent of program graduates and 84 percent of active participants exhibited improved blood pressure compared to their baseline measurements. One hundred percent of participants have not become pregnant again within 12 months of joining the program. Pennsylvania The chapter collaborated with obstetrical and neonatal practitioners on development of a NICU educational pilot to address increased risk of subsequent preterm birth among women who recently delivered prematurely. The chapter also worked with Maternal Fetal Medicine practitioners on development and implementation of a recurrent pregnancy loss prevention program to address interconceptional care and preventive services. Folic Acid Education Chapters continue their work to educate women of childbearing age about the need to consume the daily recommended amount of folic acid (400 micrograms) before and during early pregnancy. Folic acid education remains a crucial component of preconception care to help reduce the incidence of neural tube defects (birth defects of the brain and spinal cord). Kentucky Kentucky has maintained the original Folic Acid Partnership (KFAP) group that began in 2000, which became A Perinatal Work Group with the March of Dimes Prematurity Campaign kick-off in 2003. The KFAP provided consumer education on folic acid and preterm birth to 2,600 consumers during 2010. More than 70 providers received that information as well. In 2010, chapters distributed more than 76,000 bottles of multivitamins containing folic acid to women of childbearing age. 7

Project Alpha The March of Dimes and Alpha Phi Alpha Fraternity, Inc., began collaboratively implementing Project Alpha in 1980. This project is designed to provide education, motivation and skill-building on issues of responsibility, relationships, teen pregnancy and sexually transmitted infections for young males, ages 12 to15 years. Project Alpha 2010 Chapters participating 7 Number of programs 15 Individuals served 878 Community grant funds awarded $26,145 Seven chapters implemented 15 Project Alpha programs in 2010, reaching 878 young men. WA OR NV CA ID AZ UT MT WY CO NM ND SD NE KS OK MN IA MO AR WI IL IN OH MS MI TN AL KY GA WV SC PA VA NC NY MD VT NH CT NJ DE DC ME MA RI TX LA FL AK HI PR 2010 Project Alpha sites 8

During Pregnancy To help women have healthier pregnancies, March of Dimes chapters support the implementation of programs like CenteringPregnancy, Healthy Babies are Worth the Wait, Becoming a Mom/Comenzando bien and The Coming of the Blessing. Chapters also are very active in convening and partnering with hospitals and health care providers in implementing perinatal quality improvement programs. 9

Quality Improvement Infants born between 37 and 39 weeks of gestation are more likely to experience a number of health problems compared to infants born after 39 weeks. Some of these include: respiratory distress syndrome, need for ventilator support and persistent pulmonary hypertension and often result in admission to the neonatal intensive care unit. 2, 3 In order to eliminate non-medically indicated early deliveries in California hospitals, the March of Dimes, California Maternal Quality Care Collaborative (CMQCC) and the California Maternal Child and Adolescent Division of the state Department of Health jointly produced a toolkit for hospitals, The Elimination of Non-medically Indicated (Elective) Deliveries Before 39 Weeks Gestational Age. 34-2483-10 10/10 A California Toolkit to Transform Maternity Care Elimination of Non-medically Indicated (Elective) Deliveries Before 39 Weeks Gestational Age This collaborative project was developed by: March of Dimes California Maternal Quality Care Collaborative Maternal, Child and Adolescent Health Division; Center for Family Health California Department of Public Health The Big 5 States (California, Florida, Illinois, New York and Texas) represent nearly 40 percent of the births and 38 percent of the preterm births in the United States. In May 2010, these five states met to finalize their initial collaborative project the elimination of elective deliveries before 39 weeks gestation. With the development and release of The Elimination of Non-medically Indicated (Elective) Deliveries Before 39 Weeks Gestational Age toolkit, the Big 5 States developed a plan to: pilot the <39 weeks toolkit in 25 selected hospitals collect data to validate and drive change distribute consumer education materials about why the last weeks of pregnancy count A Big 5 Hospital Network comprised of 25 selected hospitals was assembled to pilot the quality improvement toolkit and to validate its effectiveness. On January 3, 2011, all 25 hospitals had completed the training, staff education and policy restructuring required to enable them to launch their hard stop policy of preventing elective deliveries before 39 completed weeks of pregnancy. In addition, a March of Dimes data portal was constructed to support the hospital network with data collection and reporting. During 2011, the hospital network will continue to meet monthly to share best practices, ask questions, find solutions to barriers and identify successes. Key findings collected from the <39 weeks toolkit pilot will be shared with hospitals and provider groups across the nation. In addition to the quality improvement initiatives of the Big 5 States many chapters are working very closely with one or more partner hospitals to reduce the rates of early elective deliveries. Consumer Awareness Why the Last Weeks of Pregnancy Count < 39 Weeks Toolkit Elimination of Elective Deliveries March of Dimes Big 5 CA, FL, IL, NY, TX Implementation QI Hospital Network Populationbased Data 2 Oshiro, B., Henry, E., Wilson, J., Branch, D., Varner, M. (2009). Decreasing elective deliveries before 39 weeks of gestation in an integrated health care system. Obstet Gynecol, 113 (4), 804-11. 3 Tita, A.T., Landron, M.B., Spong, C.Y., et al. (2009). Timing of elective repeat cesarean deliver at term and neonatal outcomes. N Eng J Med, 360, 111-20. 10

Healthy Babies are Worth the Wait Healthy Babies are Worth the Wait (HBWW) is a preterm birth prevention initiative with a focus on preventable late preterm birth. Through partnerships and collaborations between hospitals, heath departments and community organizations, HBWW provides education for pregnant patients, perinatal providers and the greater community on the problem of preterm birth, its risk factors and strategies including quality improvement measures for reducing risk of preterm birth. In addition, HBWW provides a supportive structure for implementing a package of evidencebased preterm birth prevention interventions. The HBWW pilot initiative, funded jointly by the March of Dimes and Johnson & Johnson and implemented in collaboration with the Kentucky Department for Public Health, was implemented in three communities (intervention sites) in Kentucky over a 3-year period (2006 to 2009). This multifaceted project used evidence-based clinical and public health interventions to reduce preventable preterm and late preterm births. Kentucky was selected for the pilot because of its elevated preterm birth rate (above the national average); the rapid increases in preterm birth and late preterm birth that the state had experienced over the 3 years prior to the initiation of HBWW; leaders in the state s perinatal community who were committed to addressing preterm birth; high rates of elective inductions and cesarean sections; and high rates of modifiable risk factors such as smoking. The overall goal of the HBWW pilot initiative was a 15 percent reduction of preterm birth in the intervention sites. Preliminary results indicate that Kentucky saw a drop in preterm singleton births of 9.4 percent and a drop in late preterm singleton births of 10.1 percent during the 3-year pilot period. In 2011, HBWW activities will be enhanced in Kentucky; a new HBWW initiative will be planned in Texas; and a demonstration project in New Jersey will be established to determine how the HBWW model might be best applied to reduce racial and ethnic disparities in preterm birth. Healthy Babies are Worth the Wait Preventing Preterm Births through Community-based Interventions: An Implementation Manual The March of Dimes HBWW Manual is available to communities across the country. Interested hospitals, clinicians, community agencies and departments of health are invited to join with their March of Dimes chapter to partner in implementing HBWW prematurity prevention projects. 11

CenteringPregnancy More than 3,400 women received group prenatal care through March of Dimesfunded CenteringPregnancy programs in 2010. CenteringPregnancy is an evidence-based approach to prenatal care that provides education and social support in a group setting. The model was developed by the Centering Healthcare Institute (CHI) and has been supported by the March of Dimes for the past 10 years. In 2010, 29 March of Dimes chapters provided community grant support for CenteringPregnancy, funding training, technical assistance, site approval and the implementation of classes. The CenteringPregnancy model of care was expanded in several chapters in 2010, thanks in part to a generous grant from the WellPoint Foundation. In the 10 sites funded by WellPoint, nearly 700 women received prenatal care through the CenteringPregnancy program; all but one site realized a lower rate of preterm birth, compared to their state. Illinois The Illinois Chapter funded consultation and training through the Centering Healthcare Institute for eight CenteringPregnancy programs (12 clinical sites) across Illinois. More than 1,200 medically underserved women to date have benefited from participating in CenteringPregnancy prenatal groups funded by the Illinois Chapter of the March of Dimes. A full evaluation of pregnancy outcomes is underway. Preliminary results indicate that there is a 66 percent lower rate of preterm births (4.3 percent compared to the Illinois rate of 12.7 percent). Mobile Health Centers As of December 31, 2010, March of Dimes Mom & Baby Mobile Health Centers officially met the deliverables as established in the Qatar Katrina Fund Agreement, completing more than 12,000 patient encounters among the three vehicles funded by Qatar and located in Louisiana. Including cumulative visits from the mobile health center in Mississippi, the March of Dimes provided more than 16,500 care encounters in Louisiana and Mississippi since the inception of the program following the devastation left by Hurricane Katrina. Louisiana State University Health Care Services Division has been identified as the new partner provider for the two mobile health centers in New Orleans where they will be utilizing the CenteringPregnancy model to provide prenatal care to areas in need. Southwest Louisiana Area Health Education Center and Coastal Family Health Center remain our partner providers in Lafayette, La., and Biloxi, Miss., respectively. Representatives from March of Dimes mobile health programs in Louisiana, Mississippi, Washington, D.C., and Florida attended the National Mobile Health Clinics Forum, and delivered a poster presentation, plenary participation and an oral presentation. Mom & Baby Mobile Health Center Birth Outcomes, New Orleans, La., 2007-2009 Preterm Birth Rate (of the known birth outcomes) [Louisiana 16.1%, United States 12.8% 2007 data] 5.9% (2007; n=34)) 4.2% (2008; n=119) 1.5% (2009; n=122) Low Birthweight (of the known birth outcomes) [Louisiana 11.4%, United States 8.3% 2007 data] 4.5% (2007; n=22) 3.8% (2008; n=105) 2.5% (2009; n=122) 12

Smoking Cessation The negative effects of smoking during pregnancy are well documented. It increases the risk of delivering a low birthweight baby, and of developing problems with the placenta. 4 Smoking during pregnancy also can increase the risk of premature rupture of the membranes. 5 When this happens before 37 weeks of pregnancy, it often results in premature birth. Despite these health risks, 19.6 percent of women of childbearing age in the United States smoke. 6 Alabama The chapter expanded the activities of its smoking cessation partnership with the Alabama Medicaid Agency and the Alabama Department of Public Health in 2010. These activities included a significant increase in the number of Medicaid maternity participants who called the Quitline increased by 153 percent during the grant period. The chapter also held a series of Grand Rounds on smoking cessation professional education, reaching 349 providers and three of Alabama s five regional referral hospitals. March of Dimes chapters across the country reached approximately 400 health care professionals with training and supported smoking cessation services for 1,000 women in 2010. Georgia The chapter focused activities on smoking cessation through a 2010 grant to the Medical College of Georgia. The Georgia Chapter funded the Medical College of Georgia COMMIT program an acronym for Circle of Motivated Moms for Infants to be Tobacco-Free. The program is a 12-month tobacco cessation approach to help pregnant women quit smoking and prevent relapse after delivery. In addition, the Georgia Chapter was the lead agency in the Tobacco Technical Assistance Consortium Education group whose purpose is to provide a webinar for health care professionals on using the recommended 5A s model of smoking cessation intervention. The 5 A s is a brief intervention model that can be used during regular medical appointments. The clinician takes approximately 5 minutes during each appointment to do the following: Ask Systematically identify all tobacco users at every visit Advise Strongly urge all tobacco users to quit Assess Determine willingness to make a quit attempt Assist Aid the patient in quitting Arrange Schedule follow-up contact 4 US Department of Health and Human Services. The Health Consequences of Smoking: A Report of the Surgeon General, 2004. Centers for Disease Control and Prevention, Office on Smoking and Health, Atlanta, Georgia, May 2004. 5 Fiore, M.C., Jaen, C.R., Baker, T.B., et al. Treating Tobacco Use and Dependence: 2008 Update. Clinical Practice Guideline. Rockville, MD: U.S. Department of Health and Human Services, Public Health Service. May 2008. 6 Behavioral Risk Factor Surveillance System. Behavior Surveillance Branch, Centers for Disease Control and Prevention. Retrieved April 2, 2011, from www.marchofdimes.com/peristats. 13

Addressing Disparities Becoming a Mom/Comenzando bien Becoming a Mom/Comenzando bien is a March of Dimes prenatal curriculum used with pregnant women in a supportive group setting. Nine sessions present information on topics such as prenatal care, nutrition, stress, labor and birth, postpartum care and newborn care. The curriculum, available in English and Spanish, provides lesson plans, participant handouts and suggestions on how to adapt the curriculum for different cultural groups. Becoming a Mom/Comenzando bien 2010 Chapters participating 13 Individuals reached 13,700 Community grant funds awarded $391,967 Texas The Texas Chapter has implemented this curriculum as part of its Hispanic Outreach Initiative. Almost 50 percent of Texas babies are born to Hispanic families. In many cases, Hispanic women receive limited or no prenatal care. The Comenzando bien prenatal education program helps Hispanic women understand the risks of premature birth and have healthy, full-term babies. Eleven Comenzando bien programs are located in communities across the state. Of 1,217 participants reporting birth outcomes, only 2 percent of them delivered preterm. Thirteen states implemented 89 Becoming a Mom/Comenzando bien programs, reaching 13,705 women and training 490 new program facilitators. WA OR NV CA ID AZ UT MT WY CO NM ND SD NE KS OK MN IA MO AR WI MI IL IN OH MS TN AL KY GA WV SC PA VA NC NY MD VT NH CT NJ DE DC ME MA RI TX LA FL AK HI PR 2010 Becoming a Mom/ Comenzando bien sites 14

Stork s Nest Since 1972, the March of Dimes and the Zeta Phi Beta Sorority, Inc., have collaborated to deliver the Stork s Nest program in communities across the country. This program provides prenatal education and group support to low-income pregnant women. Participants earn points for participating in group classes and for adopting healthy behaviors. They can then redeem these points for baby items that have been donated by the community. Stork s Nest 2010 Chapters participating 18 Individuals reached 4,001 Community grant funds awarded $161,473 CA OR WA NV AK ID AZ UT MT WY NM CO HI ND SD NE Eighteen states implemented 161 Stork s Nest programs, reaching 4,001 women. KS TX OK MN IA MO AR LA WI MI IL IN OH MS TN AL KY GA WV SC FL PA VA NC NY MD 2010 Stork s Nest sites VT NH CT NJ DE DC ME MA RI PR The Coming of the Blessing The Coming of the Blessing is a March of Dimes initiative for American Indian and Alaska Native (AI/AN) families. Chapters worked with 60 health professionals and community health workers to offer culturally relevant prenatal education for American Indian families. Training was provided to tribes and tribal partners in the following states: Arizona, Montana, New Mexico, North Dakota, South Dakota, Wisconsin and Wyoming. Stipends were awarded to provide prenatal education to American Indian women through the Coming of the Blessing and the CenteringPregnancy model of group prenatal care. Prenatal education messages were promoted on local radio programs and garnered three national awards: the 2009 National Perinatal Association Transcultural Award for enhancing awareness of diversity in the United States; the 2010 National Indian Health Board Regional Impact Award for demonstrating a positive impact on the health of Native families; and the 2010 National Indian Health Board Local Impact Award. 15

After Pregnancy In 2010, the March of Dimes expanded NICU Family Support to more than 100 hospitals offering services to more than 75,000 families. 16

31 minutes Closed Captioned March of Dimes Services in the NICU NICU Family Support At the frontlines with mission-affected families and perinatal professionals during a birth crisis, NICU Family Support provides information and comfort through bedside support with experienced, compassionate March of Dimes staff and volunteers; innovative programs for fathers, siblings and the bereaved; educational materials; and group activities for parents that impart valuable knowledge, parentto-parent support and opportunities to heal and find hope. When parents are most overwhelmed and frightened, the March of Dimes is right there with them offering strength and comfort. The March of Dimes once again had a large presence at the 23rd Annual Gravens Conference on the Physical and Developmental Environment of the High Risk Infant, in collaboration with the March of Dimes. With each year of collaboration between the March of Dimes and the Gravens Conference, leadership and visibility of NICU Family Support continues to expand and increase. The March of Dimes was represented by 75 staff members and volunteers at the conference, conducting 13 presentations on topics ranging from teen parent, sibling and antepartum support to quality improvement tools for NICUs to supporting shorter stay NICU families. The conference also provided the March of Dimes with the opportunity to highlight its Close to Me (kangaroo care) module, an initiative that is strengthening the quality of programming and support provided to NICU families. March of Dimes: Our Reach In 2010, the March of Dimes expanded NICU Family Support to more than 100 hospitals offering services to more than 75,000 families. This expansion was achieved in large part through the implementation of the Hospital License and NICU Family Support Center (kiosk) Programs. Many sites include a combination of both so that families are supported by an onsite NICU Family Support Specialist as well as a freestanding kiosk that offers continuous online information and parent-to-parent support to families. Shareyourstory.org, the Foundation s online community for NICU families, served 36,500 members and almost 500,000 unique visitors from around the world, seeking and providing support through thousands of blogs and discussion forums. Twelve thousand Share Your Story members were active in posting comments, stories and questions to the community in 2010. NICU Family Support Project Sites March of Dimes Family Support Specialists supported NICU families by distributing Parent Care Kit and other educational materials, conducting Parent Hours, implementing programs that focus on transitions, bereavement, family empowerment and photography; and bringing critical awareness to NICU staff about how to best comfort parents and other family members. All NICU Family Support project sites provide group information to families on risk and recurrence prevention, including information on creating a safe home for babies being discharged, as well as tips on reducing the chances of having a subsequent preterm birth. In 2010: 21,704 families received Parent Care Kits: comforting, educational materials from the March of Dimes 25,020 family members attended 3,513 educational and supportive activities hosted by the March of Dimes 2,921 family members attended Risk and Recurrence Prevention Parent Education Hours a keepsake journal un diario de recuerdo bringing your baby home 17

NICU Family Support Centers This onsite resource center provides families access to print and online information and parent-to-parent support. Families can search for information on procedures and conditions common in the NICU on both March of Dimes and hospital websites. Parents and family members can connect with other families who share the NICU experience by accessing shareyourstory.org. They also have access to relevant and supportive print materials in English and Spanish from the March of Dimes that they can take home. In 2010: 40 NICU Family Support Centers were in place 7,000 NICU families had access to online support through a Center NICU Families utilized a Center approximately 130 times per month NICU Family Support Hospital Licensing The March of Dimes continued to expand NICU Family Support by offering hospitals the ability to license our trademarked program, associated materials and resources. License Programs benefit from an in-depth assessment of the state of family support in their NICUs with recommendations for change; innovative, family-centered seminars focused on parent-staff communication, caring for families in crisis, and caregiver fatigue for NICU staff, led by expert March of Dimes trainers; exchange of solutions and innovations with our network of NICU Family Support sites through online forums and webinars; and site management by national March of Dimes staff. In turn, licensed hospitals staff and fund their programs. In 2010, there were 16 hospitals in partnership with the March of Dimes through the NICU Family Support License Program, reaching more than 10,000 families. Since 2009, 49 family-centered Licensing seminars have been conducted by national March of Dimes staff for more than 1,500 NICU professionals. Family-Centered Care Leadership March of Dimes NICU Family Support has been at the forefront of neonatal family-centered care, promoting its philosophy and practice in sites throughout the U.S., Licensing Seminars and at national conferences. March of Dimes NICU Family Support staff from across the country participated in the 23rd Annual Gravens Conference. The March of Dimes brought expert speakers, perspectives and a new critical focus on family support to the conference. The important work, innovations and methods of supporting families developed through March of Dimes NICU Family Support were presented in 16 oral and poster sessions, panels, workshops and plenaries. The March of Dimes presented and promoted best practices in family-centered care in other health and medical forums, including conferences held by the American Academy of Pediatrics, Association of Women s Health, Obstetric and Neonatal Nurses, National Perinatal Association, National Association of Neonatal Nurses and the Advanced Practice Nursing Forum. 18

Leading Practice Awards Every year chapters are invited to submit descriptions of exemplary programs in a variety of categories. In 2010, three chapters received Program Leading Practice Awards in the NICU Family Support category. These entries were selected because of innovative practices and excellence in NICU Family Support with an emphasis on how the program has enhanced knowledge, attitudes and skills that have encouraged an institutional change towards adapting familycentered care principles. Delaware Chapter Delaware developed an innovative program for NICU fathers to help them recognize their important role, learn how to care for and bond with their baby and identify signs and symptoms of postpartum depression in their partner. New Mexico Chapter New Mexico addressed the needs of teen parents in the NICU by collaborating with the NICU social worker to develop a New Parents Group for teenagers and others to receive guidance, support and resources. Pennsylvania Chapter Pennsylvania spearheaded a parent education series comprised of four rotating neonatologists who answer questions posed by NICU parents in a group setting. Thank you for the wonderful parent information materials. Knowledge is power, and these resources gave me the power to educate myself and feel as though I was gaining some control of the situation. The resources provided by the March of Dimes have become invaluable to me. Thank you. Dylan s mom, South Dakota. The North Carolina Chapter s NICU Family Support project at the University of North Carolina Health Care System demonstrated an extraordinary partnership between the March of Dimes and the University of North Carolina Health Care System. Out of this relationship has come system-wide changes in family-centered care at the hospital, including enhanced parent participation and 24/7 parent presence including at shift change. The site collaborated with a NICU parent to develop a transformative video on preventable infections in newborns, which has resulted in a decrease in catheter-associated blood stream infections of more than 50 percent. The project and the Specialist were cited as key to the hospital s attainment of Magnet Status. The family-staff advisory committee and NICU Family Support volunteers are tremendously involved in bringing change, supporting families through parent-to-parent support, and speaking at Parent Education Hours. Volunteers have contributed more than 1000 hours of direct service assistance. Tara Bristol, the NICU Family Support Specialist, accepted the award on behalf of the North Carolina chapter. 2nd Annual Award NICU Family Support 2010 Project of the Year The North Carolina Chapter received the 2nd Annual NICU Family Support Project of the Year Award. The Project of the Year was developed to recognize excellence in meeting the goals of the March of Dimes NICU Family Support project: providing information and comfort to families, professional development opportunities for NICU staff, and promoting family-centered care in the NICU. March of Dimes President Dr. Jennifer L. Howse and Tara Bristol, MA, NICU Family Support Specialist 19

Chapter Recognition Chapter of the Year Program Chapter of the Year Program award winners are recognized for excellence in developing and implementing programs that further the March of Dimes mission. Three chapters were recognized in July 2010 for their program work in 2009. Hawaii (small chapter) The Hawaii Chapter adapted the CenteringPregnancy model to meet the unique needs of specific populations, by translating materials and conducting sessions in native languages. One group was conducted entirely in Chuukese, which helped to reach a group of women who otherwise would have had great difficulty addressing culturally appropriate prenatal care. The chapter also funded prenatal care for women with a history of substance abuse. This program was successful in assisting the women to stop using drugs and alcohol, and the rates of preterm birth and low birthweight of the participants were well below the state average. In the area of Quality Improvement, the chapter worked with key partners to create and conduct a survey of hospitals and physicians to determine current practices related to elective inductions of labor and c-sections. They realized an impressive survey return rate of well over 50 percent. The results of this survey will inform the development of new quality improvement programs including policies designed to eliminate elective deliveries in hospitals and physician practices throughout the state. South Carolina (medium chapter) The South Carolina Chapter reached out to underserved populations to ensure they are getting the care they need. The chapter used the March of Dimes Becoming a Mom/Comenzando bien curriculum to provide prenatal education to pregnant Latina women. One hundred percent of the women who enrolled in the program began prenatal care within the first month after beginning the classes. These women also increased their use of folic acid, their knowledge of signs and symptoms of preterm labor, and their enrollment in the Women, Infants & Children nutrition program. The chapter s African-American Steering Committee led awareness activities for National Minority Health Month and March of Dimes Prematurity Awareness Day. To increase understanding of the issues related to racial and ethnic disparities in perinatal health, the committee planned and conducted a webinar attended by 47 health professionals. The committee also was very active in publicizing community grant funding activities to organizations that serve minority populations. Texas (large chapter) The Texas Chapter has taken a focused approach to providing CenteringPregnancy services across the state with outstanding results. Of 511 women who participated in the evaluation of the program at 15 sites, only 6.5 percent gave birth prematurely (a 53 percent decrease) as compared to the Texas preterm birth rate of 13.7 percent. Only 4.2 percent of the women gave birth to low birthweight babies (a 49 percent decrease) as compared to the state rate of 8.3 percent. In the area of quality improvement, the chapter has secured partnerships with several key organizations including the Texas Hospital Association, the state medical association and the state health department to assess current practices and share best practices related to reducing elective inductions and c-sections before 39 weeks gestational age. Together, these partners continue to promote the importance of implementing quality improvement programs in delivering hospitals to reduce the number of women undergoing elective deliveries prior to 39 weeks of pregnancy. 20

Program Leading Practices Greater Oregon Baby & me Tobacco Free The chapter supported smoking cessation counseling training for public health program staff and local health care providers. The program used carbon monoxide (CO) testing to determine smoke-free status during pregnancy and after delivery. Seventy-nine percent of the women (n=53) remained smoke free during pregnancy. One hundred percent of the women who delivered during the term of the project were smoke free at the time of delivery. Fifty percent of the women who were smoke free during pregnancy remained smoke free during the postpartum period. New Jersey Bringing CenteringPregnancy to New Jersey The chapter met with various stakeholder groups, including Medicaid, Federally Qualified Health Centers, hospital medical directors and obstetric staff, to educate them on the CenteringPregnancy model of care and gain their support for implementing it in New Jersey. The chapter then funded a CenteringPregnancy program at the University of Medicine and Dentistry of NJ (UMDNJ) OB/GYN clinic to serve 60 women the first year and 90 the second. This hospital clinic has 1,500 deliveries each year. In addition, the Newark Community Health Center has one obstetrician and four nurse midwives trained in the CenteringPregnancy model and providing services, and the chapter has been instrumental in expanding CenteringPregnancy services to women from racial and ethnic groups with higher rates of preterm birth and other adverse pregnancy outcomes. South Carolina Nine Matters! Nine (9) certified childbirth educators were trained and taught nineteen (19) 5-class sessions of 9 Matters! across Anderson County. Referrals were made to the program by guidance counselors, OB office nurses and doctors, school nurses, school district family literacy program staff members, teachers, vice principals and Nurse Family Partnership nurses. Ninety percent of program participants (n=60) self reported on pre- and posttests that they had adopted healthy behaviors and avoided risk-taking behaviors that could harm their baby. Out of 42 deliveries among 9 Matters! participants who have already delivered, only one has done so prematurely. Texas Statewide Comenzando bien Initiative The chapter supported culturally relevant prenatal education to more than 3,000 Hispanic/Latina women using the March of Dimes Comenzando bien curriculum. Graduate participants who become mentors create a vested interest in each woman s well-being. Of the participants reporting birth outcomes (n=922), 98.1 percent delivered a full-term baby. Leading Practice Awards are also given in the NICU Family Support program. The winning entries in that category are described on page 19. 21

March of Dimes National Office 1275 Mamaroneck Avenue White Plains, NY 10605 Telephone (914) 997-4705 Fax (914) 997-4576 marchofdimes.com nacersano.org 2011 March of Dimes Foundation 6/11