Title Page

How to Effectively Communicate Prevention Messages to Women of Child-Bearing AgeThe Statewide Parent Advocacy Network has received funding for this project from theNew Jersey Department of Human Services, Office for the Prevention of Developmental Disabilities (OPDD)

Project Partners

New Jersey Department of Health Division of Family Health Services

New Jersey Department of Human Services Office for the Prevention of Developmental Disabilities (OPDD)

New Jersey Primary Care Association

TRAINING OVERVIEW: Part I: What is Prevention and Why is it Important?

Part II: Statistics

Part III: Focus Group Results - Messaging

Part IV: Recommendations

Part V: Resources

Training Goals:Why is prevention important and how does it relate to the Life Course Perspective

Identify strategies for communicating with diverse women

Understand cultural barriers and how they relate to womens ability to access healthcare

Learn about resources and supports for diverse womenBy the end of this presentation, 4Project OverviewTo educate health care providers to effectively communicate culturally, linguistically, and socio-economically relevant prevention messages to their female patients of childbearing age (especially those women at greatest risk of having a child with birth defects/developmental disabilities), with the long-term goal of positively impacting the behavior of such women in ways that reduce birth defects and developmental disabilities.

Our project goals are to:Strengthen the capacity of health care provider practices to effectively communicate culturally, linguistically, and socio-economically relevant prevention messages to their female patients of childbearing age

Emphasize the importance of overall health and prenatal care for all women of childbearing age

Improve access to culturally, linguistically, and socio-economically relevant prevention information, resources, and support for diverse women of childbearing age and improve partnerships between primary care providers and their diverse patients of child bearing age

To positively impact the behavior of such women, in ways that reduce birth defects that cause developmental disabilities.

Women will be connected to a Family Resource Specialist (FRS) by a participating healthcare provider based on need for follow-up support

6THE NEED FOR PREVENTION MESSAGING

Why focus on prevention?According to the Centers for Disease Control & Prevention, birth defects affect 1 in 33 babies and are a leading cause of infant mortality in the United States. In New Jersey, birth defects affect 1 in 20 babies: more than 8,000 babies a year.

In the U.S., more than 5,500 infants die each year because of birth defects, which is twice as many as from sudden infant death syndrome (SIDS).In New Jersey, about 85 infants die each year due to birth defects, more than twice as many as from SIDS.

The three leading causes of infant death - congenital malformations, low birthweight, and Sudden Infant Death Syndrome (SIDS) - accounted for 46% of all infant deaths. About 35% of infant deaths were preterm-related. 8

Infant Mortality Rate by Leading Causes of Death, New Jersey, 2004-2008 (most recent data)

Cause of Death Deaths per 1,000 Live Births Congenital Anomalies=0.8 Maternal Complications of This Pregnancy=0.3 Respiratory Distress=0.3 Short Gestation/Low Birth Weight=1 SIDS=0.3

Why Is This Important?The infant death rate is a critical measure of a population's health and a worldwide indicator of health status and social well-being.

DefinitionRate of death occurring under 1 year of age in a given year per 1,000 live births in the same year

Data SourcesBirth Certificate Database, Office of Vital Statistics and Registration, New Jersey Department of Health;Linked Infant Death-Birth Database, Center for Health Statistics, New Jersey Department of Health;

9Infant mortality rates in USIn 2010, the infant mortality rate was 6.1 deaths per 1,000 live births. In 2005 the infant mortality rate was 6.9.

Between 1995 and 2005, the infant mortality rate in the United States declined more than 9%.

US Department of Human ServicesCenters for Disease Control and PreventionNational Department of Health StatisticsNational Vital Statistics System

As you can see the rate has only gone down a little bit but we need to do more. We need to talk to women about why prevention is important and what they can do themselves to help prevent birth defects and developmental disabilities in their children. While not all birth defects and developmental disabilities can be prevented, many of them can be. Although mortality decreases with increasing gestational age, even infants born only a few weeks early have a substantially increased risk of death and disability when compared with term infants (23-26). In 2010, the infant mortality rate for late preterm infants (34-36 weeks) was 7.15, 3 times the rate for infants born at term. Even within the term period, infants born at 37-38 weeks of gestation (early term) had mortality rates that were two-thirds higher than those born at 39-41 weeks of gestation. 10Infant Mortality Rates

This chart represents the infant mortality rate statistics from the 2010 linked birth/infant death data set.In the linked file information from the death certificate is linked to information from the birth certificate for each infant under 1 year of age who died in the 50 states, the District of Columbia, Puerto Rico, the Virgin Islands, The number of infant deaths was 24,572 in 2010, a decline of 1,836 infant deaths from 2009. From 2009 to 2010, the infant mortality rate declined 8%. It was the highest for non-Hispanic black mothers to 11.46 and 3% for non-Hispanic white mothers to 5.18. Asian or Pacific Islander mothers had the lowest rate in 2010 (4.27). 11Infant Mortality Rate by Mother's Race/Ethnicity, New Jersey, 2000-2008 (HNJ2010/HNJ2020)

Why Is This Important?The infant death rate is a critical measure of a population's health and a worldwide indicator of health status and social well-being.

DefinitionRate of death occurring under 1 year of age in a given year per 1,000 live births in the same year

Data SourcesBirth Certificate Database, Office of Vital Statistics and Registration, New Jersey Department of Health;Linked Infant Death-Birth Database, Center for Health Statistics, New Jersey Department of Health;Data NotesData for White, Black, and Asian/Pacific Islander do not include Hispanics. Hispanic ethnicity includes persons of any race. This is a Healthy New Jersey 2010 (HNJ2010) and 2020 (HNJ2020) Objective.12Low birth ratesIn 2010, 8.1% of babies born in the US weighed less 2,500 grams compared to 8.3% in 2006.

In 2011, the rate of babies born with low birth weight was 8.5% (9,005) and was 8.5% (9,850) in 2007.Low birth weight is the percent of live births for which the infant weighed less than 2,500 grams (approximately 5 lbs., 8 oz.).Even though there has been a small downward trend since 2006, essentially there was no change in the percentage of low birth rate in 2010.Low birth weight indicates maternal exposure to health risks in all categories of health factors, including her health behaviors, access to health care, the social and economic environment she inhabits, and environmental risks to which she is exposed.According to the 2010 report from the National Center for Health Statistics the percentage of low birth weight was 8.1%.

13FOCUS ON OVERALL HEALTHHealthy Habits are Important50% of pregnancies in the United States are categorized as unintendedHealthy women have a higher likelihood of healthy outcomesThe health status and habits of women in the US places them at risk for short and long term morbidities and early mortalitiesPromoting high levels of health in all women is likely to result in preconceptional health promotion for those who become pregnant

Unintended pregnancies are associated with:increased likelihood of abortionexposures to potentially harmful substances poor pre-pregnancy disease control late entry to prenatal careincreased likelihood of low birth weight in offspringmaternal depressionreduced school completion and lower income attainment if woman is not married

The rate of unintended pregnancy in 2001 was substantially above average forWomen ages 18-24 (26% of the total number of unintended pregnancies)Unmarried, particularly co-habitating womenLow-income womenWomen who have not completed high schoolMinority women

15Examining the Link between Promoting Womens Health and Promoting Preconceptional Wellness

Major threats to womens health are also major threats to reproductive outcomes.

Focus on overall healthAccess to early prenatal care must also focus on women before they become pregnant through the promotion of preconception care and family planning services.

Health and well being that focuses on nutrition is an essential component to preconception and interpregnancy care.

Nationally, about 60% of all pregnancies are unintended, mistimed or unwanted. In New Jersey, this figure is about 32%. To address this reality, there is a need for reproductive education, with an emphasis on timely and adequate prenatal care, to ensure and optimize the health of women and children in New Jersey.

Essential to the health and wellbeing of all women is adequate preconception and interpregnancy care.

17Healthy habits are important!Healthy diet Women need to eat fresh fruits, vegetables, and whole grains. Cut down on the sugar!They also need plenty of folic acid, iron, and calcium through food, and in a multi-vitamin.

Get Plenty of exercise Women dont have to go to the gym to exercise. Exercise reduces stress. And if you do get pregnant, being a healthy weight reduces the chance of having a baby with a heart defect or other birth defect.

Mental healthmental health is just as important as a womans physical health.

Healthy dietThey need to start now! Get Plenty of exerciseThey can walk to a farther-away bus stop. Park farther away from the store entrance. Take the stairs instead of the elevator. The more you exercise, the better you look and feel! Mental healthIf a woman is feeling sad, stressed or angry for long periods of time, a referral should be made to a mental health professional.

18The importance of Folic AcidInadequate maternal folate levels can cause:Increased incidence of neural tube defectsIncreased incidence of other birth defectsSome anemiasmother and infant

All women of child bearing age should take a multi vitamin that has folic acid or should include foods with folate into their daily diet. Folic acid can only help to decrease neural tube defects and other birth defects if taken prior to becoming pregnant. 19COMMUNICATING HEALTH MESSAGES

Communicating Health MessagesAge of womanteens versus older womenFamily circumstancesmarriage statussupport systemHealth Literacyability to read & comprehend health related informationCulture/linguistic contextrelevant to a womans cultureSocio-economic status

When communicating effective health prevention messages to women of childbearing age, its important to consider the following things:

21Communicating Health MessagesHealth Literacy - health literacy affects peoples ability to:

Share personal and health information with providers

Understand instructions on prescription drug bottles and nutrition labels

Manage chronic health conditions

Understand how to locate and access affordable health care for themselves and their children.

A womens health literacy level will also impact their ability or lack thereof to:

Understand and act on concepts like preparedness and risks associated with unhealthy behaviors and environmental issues

Understand how to locate and access affordable health care for themselves and their children.

22Communicating Health MessagesCulture/linguistic context - culture includes how people think, what they do, and how they use things to sustain their lives. Audiences do not speak our professional jargon and that culture influences how people communicate, understand, and respond to health information.Socio-economic - factors such as education, employment and income influence preconception health.

Dont make assumptions based on a womans culture Provide an open and honest environment for effective communication to happen

23PRECONCEPTION HEALTHMESSAGESPreconception HealthComponents There are many things to consider when addressing preconception health.Risk factorsObesityDrugs - Prescription & Street SmokingAlcoholFolic AcidEnvironmental exposuresGenetic risk factorsPrevious negative pregnancy OutcomesPreconception is a woman's health before she becomes pregnant. It means knowing how health conditions and risk factors could affect a woman or her unborn baby if she becomes pregnant.

25Taking Care of Preconception HealthThe Physicians Role-The concept of preconception care has been articulated for well over a decade but has not become part of the routine practice of family medicine. Because all women of reproductive age presenting to the primary care setting are candidates for preconception care, the essential and critical role of family physicians in the provision of preconception care is apparent.

The Womans Role-All women can benefit from preconception health, whether or not they plan to have a baby one day. This is because part of preconception health is about people getting and staying healthy overall, throughout their lives.26How Does the physician fit Preconceptional Health Promotion into an Encounter?If you take care of women of reproductive potential . . .Its not a question of whether you provide preconception care, rather its a question of what kind of preconception care you are providing.

Joseph B. Stanford and Debra Hobbins

Practice level changes Small changes can make a big impact on a womans overall experience.Here are some comments from the women we spoke to: visits often feel rushed and cold office hours not always convenient waiting time is too lengthy

Here are some comments from the women we spoke to:

28Tips for PhysiciansTake time to really listen to your patientsAsk questionsWrite a note about the patients life so you have something to talk aboutBe open and dont show your personal judgmentbe supportiveShare relevant information and updated resourceswebsites, brochures, books

Communication is Key!

Listen!More personalizedTake notesPartnershipTrust

Barriers for womenLack of insurance Literacy levelTransportationChildcareLack of trustSupport system

Focus Group Overview

Total of 6 Focus groupsTeens (7)College-Age (12)Older womenAfrican American women (13)Arab American women (7)South Asian women(8) Spanish speaking women (10)Total number of women who participated57 womenbetween the ages of 14 years 52 years

Common ThemesEstablishing a positive, trusting relationship between patient and physician is keyTrustCommunicationThe women prefer to get their health information directly from their healthcare provider. Women prefer friendlier doctors who show more concernWomen want more feedback about test results and what they meanWomen want to spend more time with their health care providerThey dont want to have to tell the same thing to multiple people

More Common Themesvisits often feel rushed and coldoffice hours not always convenientwaiting time is too longdont take a multi-vitamintime to exercise

Exercise was more important to the college age women and only a few of the older women exercised on a regular basis.34Teens (14 years-18 years)Topics discussedNutrition and ExerciseMental healthSexualityTips for Communicating with TeensMake sure the message is relevant to their lifestyle and that the media used to convey them resonate with teens and their peers. Make sure to take into account their attitudes, opinions, knowledge, and behaviors Talk with teen and parent about who should be in the room during the visit and conversationDont stop the conversation when a young women says no!

Confidentiality is important for young women. Many told us they never had the opportunity to talk with the doctor one-on-one without their mom being in the room. Some young girls even shared that their sibling was often in the roomThe young women we spoke with often stated that if they answered no to a question that their doctor asked, the doctor would not discuss the risks factors. The doctor typically would move on to the next subject.36Tips for Communicating with TeensDont dismiss a topic of discussion because the teen is currently not involved in that specific activityAlcohol- just because a teen is underage doesnt mean she doesnt drinkNutrition & Physical health-Importance of eating right and vitamin supplementsNone of the teens are taking Folic AcidMost not interested in exerciseSexuality-teens stated that they want information about different types of contraceptivesMental health-provide information about anger management and stress management

The young women we spoke with often stated that if they answered no to a question that their doctor asked, the doctor would not discuss the risks factors involved and the would typically move on to the next topic.

None of the teens in our focus group are taking a vitamin with folic acid and none of them had ever heard of it and why it is important for them. 37College-age women (19 years-23 years)Nutrition and ExerciseMental HealthSexualityLesbian, Gay, Bi-sexual, Questioning, and Transgender/Transsexual (LGBQT)Tips for communicating with College-age womenWant to see videos utilized for health messagesArab American WomenHealth & ExerciseFastingDiscuss with a woman as to why she is fasting and what that means for herReligionHealth Discuss concerns and the impact on a womans health Related to other health conditionsRisks associated with fastingCultureNew generationDont make cultural assumptions younger generation more Americanized

Tips for Communicating with Arab American WomenHealth & ExerciseFastingDiscuss with a woman as to why she is fasting and what that means for herReligiousHealth Discuss concerns and the impact on a womans health Related to other health conditionsRisks associated with fastingCultureNew generationDont make cultural assumptions younger generation more Americanized

41South Asian WomenHealth and wellnessFastingDiscuss with a woman as to why she is fasting and what that means for herReligiousHealth Discuss concerns and the impact on a womans health Related to other health conditionsRisks associated with fastingMessaging All used internet

Tips for Communicating with South Asian WomenHealth & WellnessFastingDiscuss with a woman as to why she is fasting and what that means for herReligiousHealth Discuss concerns and the impact on a womans health Related to other health conditionsRisks associated with fasting

Some of the women we spoke to stated they have had a positive experience with fasting and do it regularly. Make sure that women know what foods they should eat after fasting. 43African American WomenMore informationOlder women want to be provided with choicesBenefits versus risksTesting optionsMidwives Hospital settingDulla Home birthHolisticBarriersChildcare, transportation, lack of support from father, literacy issues

Tips for Communicating with African American WomenDo not make assumptionsListen to the individual needs of each womanCommunicate test results to women during pregnancySeek advice of older family membersInterested in holistic methods of healthcareSpanish speaking WomenNeed to build trust firstHealth literacyMany dont understand the language used or have a lower reading level than information presented to themNo/limited insurance coverageDont regularly see a doctorTypically get their healthcare services at federally qualified health centers (FQHCs)Tend to have more barrierstransportationchildcareTips for communicating with Spanish speaking womenAsk women what they need to help establish trustIdentify literacy level and communication needsInterpreterTranslation of health informationProvide ??????In order to build trust you need to be able to engage the women in their own health and allow them to partner with you. Make sure women understand the information being presented Many women dont go to the doctor because they do not have health insurance.

47Improving Preconception HealthRecommendationsIndividual Responsibility Across the Lifespan parental responsibilities for pre-teen girlsEach woman, man, and couple should be encouraged to have a reproductive life plan.Consumer AwarenessIncrease public awareness of the importance of preconception health behaviors and preconception care services by using information and tools appropriate across various ages; literacy, including health literacy; and cultural/linguistic contextsPreventive Visits As a part of primary care visits, provide risk assessment and educational and health promotion counseling to all women of childbearing age to reduce reproductive risks and improve pregnancy outcomes. Interventions for Identified Risks Increase the proportion of women who receive interventions as follow-up to preconception risk screening, focusing on high priority interventions (i.e., those with evidence of effectiveness and greatest potential impact).

48Improving Preconception HealthInterconception CareUse the interconception period to provide additional intensive interventions to women who have had a previous pregnancy that ended in an adverse outcome (i.e., infant death, fetal loss, birth defects, low birth weight, or preterm birth).Pre-pregnancy Checkup Offer, as a component of maternity care, one pre-pregnancy visit for couples and persons planning pregnancyPublic Health Programs and StrategiesIntegrate components of preconception health into existing local public health and related programs, including emphasis on interconception interventions for women with previous adverse outcomes.Research Increase the evidence base and promote the use of the evidence to improve preconception health.

Life Course ModelIndividual Responsibility Across the Lifespan - Each woman, man, and couple should be encouraged to have a reproductive life plan.

Consumer Awareness Increase public awareness of the importance of preconception health behaviors and preconception care services by using information and tools appropriate across various ages; literacy, including health literacy; and cultural/linguistic contexts.

As a concept, a life course is defined as "a sequence of socially defined events and roles that the individual enacts over time" (Giele and Elder 1998)The interplay of risk and protective factors, such as socioeconomic status, toxic environmental exposures, health behaviors, stress, and nutrition, influence health throughout ones lifetime.This emerging science on gene-environment interactions touches on several aspects of public health, including health disparities, fetal origins of adult disease, and outcomes related to prenatal and preconception health and health care.

50PROJECT RESOURCESResources for PhysiciansReferral to a Family Resource Specialist for women patientsResource BinderVariety of resources on prevention of birth defects, healthcare financing, mental health, dental, transportation, support groupsTechnical assistance webinarsThe webinars will be recorded and archived on the SPAN website to be accessed at any time by practice staff.52Resources for WomenFollow-up support by a Family Resource SpecialistHealthy Changes PlanPeer SupportCommunity Resources

QUESTIONS?

Contact Info. Malia Corde, Project DirectorStatewide Parent Advocacy Network35 Halsey Street, 3rd FloorNewark, NJ 07102908-208-4040 (cell)mcorde@spannj.orgwww.spannj.org

Nicole Pratt, Assistant CoordinatorStatewide Parent Advocacy Network35 Halsey Street, 3rd FloorNewark, NJ 07102973-642-8100 X 122npratt@spannj.orgwww.spannj.org