For Our Daughters Training Maria E. Fernandez, PhD UT Health Science Center-Houston School of Public Health

Who We Are?

LINCC Latinos in a Network for Cancer Control (LINCC) is one 10 CPCRNs Established in 2002 at the University of Texas, School of Public Health, Center for Health Promotion and Prevention Research A Prevention Research Center Special Interest Project Currently LINCC represents a joint effort between the University of Texas, School of Public Health and MD Anderson Cancer Center

LINCC Partners Today

Staff Contact Information Leticia Gatus Research Coordinator University of Texas School of Public Health- Houston Lizette Rangel Graduate Research Assistant University of Texas School of Public Health- Houston Dr. Maria Fernandez University of Texas School of Public Health- Houston

Agenda Objectives of the training Brief introduction of our program The role of the promotora Cervical Cancer Human Papilloma Virus (HPV) HPV vaccine Role of the promotora in the For Our Daughters Study Tailored Interactive Communications Approaches HPV Implementation Project

Objectives of the Training  To familiarize yourself and learn about our study.  To increase your knowledge about HPV, the vaccine against HPV, and cervical cancer.  To obtain the skills necessary to use the instruments of the intervention- For Our Daughters website and the fotonovela.

“For Our Daughters Project” Purpose of the Program: ◦ To decrease morbidity and mortality due to cervical cancer among Hispanic women ◦ To increase HPV vaccination among Hispanic girls, adolescents, and young women ◦ To increase parental knowledge about cervical cancer and HPV, and knowledge, attitudes, and intentions about the HPV vaccine

“For Our Daughters” Project Objectives of the Problem: Use educational materials about cervical cancer, HPV, and the HPV vaccine to increase vaccination among adolescent Hispanic girls aged 9 to 26 years old How will the program be presented by the promotoras? The program “ For Our Daughters” can be presented as an individual educational session with eligible parents.

The Role of the Promotora/ Community Health Worker

Terminology used by the Promotoras Promotoras Community Health Counselor Community Health Assistant Community Health Worker Health Education Assistant Health Facilitator Health Visitor Home Visitor

Activity 1: What are some of the roles of a promotora? Complete the spaces below with some of roles of a promotora

The Role of the Promotora EmotionalEducation Community Outreach Resources SUPPORT

The promotora helps form a connection between Doctors or Health services Promotora Women

What does a promotora do?

A Promotora: Develops a trusting relationship with the women she is working with. Does her work without prejudice and maintains strict confidentiality of her conversations with the women.

What are some characteristics of a Promotora?

Characteristics of a Promotora Has interest in health and community work. Is humble and feels equal to others. Is respected by the people. Is confident with oneself. Has the desire to learn. Accepts new ideas. Is a good leader and organizer.

Effectiveness of LHW programs Reviews have demonstrated effectiveness for: Increasing immunization uptake, promoting breastfeeding, improving tuberculosis outcomes, and reducing morbidity and mortality from childhood illnesses (Lewin 2005 Cochrane; Lewin 2010 Cochrane) Improving health and behavioral outcomes in cardiovascular disease (Fleury 2009) Improved diabetes self-management and breastfeeding outcomes, as well as on general nutrition knowledge and dietary intake behaviors among Latinos (Perez-Escamilla 2010) Increasing use of cancer screening tests (Viswanathan 2010)

Individual Studies Showing Effectiveness of LHW Programs for Increasing Cancer Screening Cultivando La Salud: A Breast and Cervical Cancer Screening Promotion Program for Low-Income Hispanic Women (Fernandez, 2009) AMIGAS, a culturally-appropriate, theoretically sound intervention for Hispanic women living along the Texas-Mexico border (Byrd, et al. 2013) Lay Health Worker Outreach and Media-Based Education for Promoting Cervical Cancer Screening Among Vietnamese American Women (Mock 2007)

Like a Promotora The main objective of the promotora is to deliver these intervention approaches to the individuals in an effective way. Being well informed of the methods of intervention is essential for the effectiveness of their delivery. Therefore, adequate training will ensure that each promotora has the knowledge needed to deliver the intervention.

During your meeting with a participant, Use simple language and define new terms. Speak clearly and with short phases. Look at non-verbal signals for understanding in women. Be an active listener. Try to keep the interaction entertaining and lively. Keys to being a good promotora

After the meeting, Encourage women to ask their doctor about any questions they may still have. Ask women to repeat back to you what they have learned.

Keys to being a good promotora REMEMBER If the women feels like you are interested in their health, the intervention will be more effective. ◦ Use techniques to listen actively during the entire session. ◦ Always make the participant feel comfortable.

Things that the promotoras should AVOID Promotoras should avoid: Giving incorrect information Making decisions for the community Putting themselves in harms way Violating trust or confidentiality

Things that the promotoras should AVOID Promotoras should avoid: Giving their own opinions or advice to others about health. Talking about diseases or topics of health which they do not have training.

Activity 2: Female Reproductive System What are the parts of the female reproductive system? List of words  Fallopian tubes  Ovaries  Endometrium  Vagina  Uterus  Cervix  Collar of the Uterus  Labia

Activity 2: Female Reproductive System What are the parts of the female reproductive system? List of words  Fallopian tubes  Ovaries  Endometrium  Vagina  Uterus  Cervix  Collar of the Uterus  Labia Fallopian tubes Ovary UterusVagina Labia

What is Cervical Cancer? Occurs when abnormal cells grow in the cervix. If these abnormal cells are not treated, they can become cancer. Source:

Cervical Cancer Statistics In the United States, cervical cancer used to be the leading cause of death by cancer in women. In 2011, (the most recent year for which data is available): 12,109 women in the United States received a diagnosis of cervical cancer.* 4,092 women in the United States died of cervical cancer. Source:

Why are there still differences among the population?

Limited access to health services Health Beliefs Lack of Knowledge Attitudes and Fears Income Disparities Cultural Competency

Cervical Cancer Disparities

Cervical Cancer Screening Disparities

Barriers to screening

National HPV Vaccination Rates National HPV vaccination rates: the National Immunization Survey at least 1 dose: 57.3% 3 doses: 37.6% BRFSS showed rates ranged widely among the states, from 20.6% in Texas to 50.4% in New York NHIS showed that 15% of year old girls and 25% of year olds had received at least one dose; only 6% and 11% respectively received all three doses 3 1 MMWR (2013) 62 (29). Human Papillomavirus Vaccination Coverage Among Adolescent Girls, 2007–2012, and Postlicensure Vaccine Safety Monitoring, 2006–2013 — United States; National STD Prevention Conference, March 2010; 3 Pruitt and Shootman, Am J Prev Med 2010;38(5):525–533)

Fernandez ME, Allen JD, Mistry R, Kahn JA, Integrating Clinical, Community, and Policy Perspectives on HPV Vaccination. Annual Reviews of Public Health. 2010; 31: Integrating Clinical, Community, and Policy Perspectives on HPV Vaccination

: Behavioral Factors Willingness/Intention to vaccinate self (Adolescents and young women) Willingness/Intention to vaccinate one’s daughter (Parents) Factors influencing willingness to vaccinate daughter Perceived barriers to vaccination Belief about acceptable age for vaccination Perceived adverse behavioral consequences Factors influencing willingness to vaccinate oneself Perceived feelings of parents - subjective norms Belief in the health benefits HPV Vaccination Factors influencing willingness/intention to vaccinate one’s daughter or oneself Knowledge of HPV and its relation to cancer Perceived vaccine safety, effectiveness, and side effects Perceived severity to HPV & HPV related disease Perceived susceptibility to HPV Perceived social norms Subjective norms Perceived provider endorsement General attitudes about vaccines Perceived benefits

Environmental Factors: Organizational Recommendations made by national immunization programs and professional organizations Infrastructure for implementation of adolescent vaccination (schools, other organizations) Office procedures to maximize vaccination Clinic policies or protocols Interpersonal  Clinician recommendation Community/Societal Health insurance, Medicaid, or access to VFC Availability (community access-eg. mobile vans) Immunization registries Social capital/community context Policy Cost of the vaccine/ Insurance coverage/Subsidies Pharmaceutical marketing Factors impacting clinician recommendation for vaccination Perceived value of recommendations made by national immunization programs and professional organizations/ Belief that influential organizations endorse vaccine HPV knowledge Perceived risk of patient to HPV and HPV-related diseases Concern about the need to discuss sexuality when recommending HPV vaccine Perceived severity of HPV infection Belief in importance of vaccinating prior to sexual initiation Barriers and benefits to vaccination Belief in mandated vaccination Academic vs non-academic practice

InterventionsCervical Cancer Client RemindersRecommended Client IncentivesInsufficient Evidence Small mediaRecommended Mass mediaInsufficient Evidence Group educationInsufficient Evidence One on One educationRecommended Reducing structural barriersInsufficient Evidence Reducing out of pocket costsInsufficient Evidence Recommendation Approaches: Community Guide

Recommended approaches for Vaccination

Activity 3: Risk Factors for Cervical Cancer We will go around the room and each person will mention a risk factor for cervical cancer. If you can’t think of one, don’t worry, we will continue with the next person. When we have finished with our list, we can discuss these factors that increase the risk of cervical cancer.

Discussion: Risk Factors for Cervical Cancer Infection with a sexually transmitted disease, especially with the human papilloma virus (HPV)* Initiation of sexual intercourse at an early age Having more than one partner, or have a partner who has multiple partners Smoking Multiple births * Most Important Risk Factor

Human Papilloma Virus (HPV)

Human Papillomavirus (HPV) The virus is usually transmitted through sexual contact. About 79 million Americans are currently infected with HPV and about 14 million Americans will become newly infected this year. (CDC, 2014). Several types of HPV: The majority of HPV infections have no symptoms and the body gets rid of them, but some types of high-risk HPV can persist and cause cervical cancer. CDC (2014). Genital HPV infection-Fact Sheet. Retrieved from

Human Papillomavirus (HPV) HPV is the most common sexually transmitted infection. HPV can be eliminated from the body, but in some cases it can develop into cervical cancer. Hispanic women have a higher rate of cervical cancer associated with HPV compared to other races.

Othercancers related to HPV Other cancers related to HPV Besides cervical cancer, Human papillomavirus (HPV) has been found to be associated with several types of cancer such as: -Vulvar -Vaginal -Penile -Anal Oropharyngeal (back of the throat, including the base of the tongue and tonsils). Each year, more than 20,000 HPV-associated cancers occur in women About 12,000 HPV-associated cancers occur each year in men

HPV-Associated Cancers (Genital HPV Infection) Cancers that develop in cells infected with HPV develop in areas involved with sexual activity Caused by high-risk HPV types Most cases caused by types 16 and 18 HPV is associated with 25,000 cases of cancer / yr: The following are the percentage of each type of cancer associated with genital HPV infection: Cervical – 99% Anal – 90% Vulva, vagina, penile – 40% Mouth – 25% Throat – 35% 48

Genital HPV Infection in Men Is as common in men as it is in women Increases a man’s risk of getting cancers around the genitals, although not common For example, anal and penile cancers Risk of anal cancer is: 17 times higher in sexually active gay and bisexual men than in men who only have sex with women Higher in men with HIV 49

Low-risk HPV Types (Signs and Symptoms of Genital HPV Infection) Does not always have visible symptoms Appearance of warts or lesions on skin surface In or around the genital area Vagina, cervix, anus, penis, scrotum In mouth or throat Warts may appear years after contracting the virus If warts appear, the person should seek medical attention immediately 50

High-risk HPV Types (Signs and Symptoms of Genital HPV Infection) Rarely has visible symptoms Abnormal Pap test (presence of dysplasia or abnormal cells) For Women: Cervical Cancer Usually no symptoms Are usually only sensed once it has become more severe Unusual vaginal bleeding or discharge Bleeding or pain after sexual intercourse Pelvic pain For Men: Penile Cancer Changes in color, skin thickening, or a build-up of tissue on the penis A growth or sore on the penis, usually painless In some cases, sore may be painful and bleed 51

Types of HPV Over 100 HPV Types Non-sexual Transmission About 70 types Cause skin warts Sexual Transmission - About 30 types High-Risk Types Types 16 and 18 Cause dysplasia, leads to cancer Low-Risk Types Types 6 and 11 Non-cancerous Cause genital warts

Activity 4: How much do we know about HPV? Instructions: Using the sheet provided, please select the statements that you believe are correct regarding the HPV vaccine. If you are not sure, don’t worry. We are here to learn together. After a few minutes, we will discuss the information as a group.

The HPV vaccine Cervarix and Gardasil, are two vaccines available to protect women against the types of HPV that cause most cervical cancers (CDC, 2011). Gardasil* and Cervarix are vaccines that have been approved for girls and women 9 to 26 years of age to help protect against the following diseases cause by HPV(FDA, 2009): Cervical Cancer Genital warts Cervical precancerous lesions * Gardasil has also been approved for boys and young men from 9 to 26 years of age to prevent cancers of the penis and anus, and genital warts. CDC. (2011, August 8). Reports of health concerns following hpv vaccination. Retrieved from CDC. (2011, September 15). Hpv vaccine information. Retrieved from

History of HPV and HPV Vaccine 1983 Discover that HPV can cause Cervical Cancer The vaccine is tested in more than 21,000 women around the world May 2010 Around 80 million doses of the HPV vaccine are distributed around the world 1991 Scientists begin to study the HPV vaccine June 2006 FDA approve vaccine CDC recommends

Who should be vaccinated and when they should do so? The American Cancer Society recommends that:  11 to 12 year-old girls should be vaccinated against HPV. It consists of a series of three injections in 6 months (1 st dose- Now, 2 nd dose- 1 or 2 months after 1 st dose, 3 rd dose- 6 months after 1 st dose).  The vaccine may be given to girls starting at age 9.  Young people aged 13 to 18 years can also be vaccinated. These young people can complete any dose they need.  Women aged 19 to 26 years need to consult with their doctors whether they need to be vaccinated.

Do the young people who were vaccinated also need to have a Pap test?  Yes, the HPV vaccine does not protect against all types of HPV that can cause cervical cancer.

HPV mass media campaigns in US: Merck’s ONE LESS Campaign 58 Uses risk message frames Emphasizes messages of loss : “Get vaccinated or risk HPV and cervical cancer”

HPV mass media campaigns: “Armed for Life” Campaign Grantham, Ahern and Connolly-Ahern, 2011 Gain framed message Protection Caused substantial controversy

Role of the promotora in the For Our Daughters Study

Role of the promotora in the study: Population of our Intervention: Hispanic parents with daughters who are years of age. Parents who have not vaccinated their daughters against HPV. Parents and their daughters that live in Houston. Clinics and clinic waiting rooms in: Areas with low income Areas that are predominantly Hispanic Clinics that offer the HPV vaccine

Role of the promotora in the study: Study Period: 8 months to complete the initial interview and intervention. 6-month follow up interview after the initial interview. Goal: 1,809 parents 1,206 parents will receive the intervention. 151 intervention per month, 30 intervention per promotora (5). About 7 to 8 participants per week, per interviewer.

Study Design: 27 Clinics * N= 1,809 Eligible Parents Random Distribution of Clinics 9 Clinics Control (n=67 Parents) 9 Clinics with Promotoras + TIMI (n=67 Parents) 9 Clinics with Promotoras + Fotonovela (n=67 Parents) 80% Follow up (n=1,512 Parents) at 6 months Lost to Follow Up n= 297 Parents (20%) at 6 months Data Analysis n=1809ts * We will have a total of 33 clinics where 6 of them are clinics that will replace others in case any clinics stop participating at some point during the study.

Map of Houston—Clinics

Approach There will be two different approaches: a fotonovela or an interactive video. These interventions have been created based on an earlier study called Living without Cancer. Focus groups with the parents also verified the appropriateness of these interventions.

The Fotonovela Fotonovelas are brief stories with images and dialogues that accompany the images. Fotonovelas are popular in Hispanic societies and are used for describing and educating the Latino audience about health issues.

Why Use Photonovels? Research* shows: People remember stories better than a set of facts Stories build self- confidence Stories reinforce culture values and norms to promote healthy behaviors Stories can be used in creative ways to motivate and mpower people regardless of age or reading ability * Doak, et al. Teaching Patients with Low Literacy Skills, From: Pregnancy & Diabetes: Lucia’s Story Published by Auger Communications, Inc.

The Interactive Video The interactive program includes a video, still images with audio and animation to communicate information. Messages will be adapted to the person, so each participant receives information geared to their individual concerns.

Get into groups of two, one of you will be the promotora and one will be the mother of a child eligible for the HPV vaccine. How would you (the promotora) explain to the mother about HPV and the vaccine? We will take turns so more can participate. Activity 5: Role Play

Tailored Interactive Communications Approaches

Tailoring ‘Tailoring’ refers to any of a number of methods for creating communications individualized for their receivers, with the expectation that this individualization will lead to larger intended effects of these communications. Hawkins, et al Understanding tailoring in communicating about health Health Education research Vol.23 no Pages 454–466

Strategies for Achieving Tailoring Goals Personalization Feedback Content matching

For Our Daughters - Para Nuestras Hijas  Moving video  Stills with audio  Graphics and Animation  Data-based tailoring  Self- Tailoring

Intervention: Interactive Program Tailored PortionsDescription of prgram content Rationale Language Parents choose either English or Spanish version Anticipating majority of parents will only speak Spanish but do not want to exclude English speakers Perceived Susceptibility Slideshow illustrating importance of HPV vaccine in preventing cervical cancer; demonstrates susceptibility Protection Motivation Theory Perceived Vaccine Efficacy Virtual promotora explains that the vaccine is effective (reinforced later in the program by the doctor) Protection Motivation Theory Block & Keller (1995)-increase belief in efficacy of the vaccine General Concerns/Barriers to Vaccination Provide set of common concerns addressed with additional information Increase belief in efficacy of the vaccine Address concerns (Social Cognitive Theory, Theory of Planned Behavior) Skill-Related Barriers to Vaccine Completion Present common skill-related barriers to completing vaccine series and ways to overcome them. Stress importance of completing vaccine series and provide information to do so Self- Efficacy Testimonials of mothers who have vaccinated their daughters Those low in self-efficacy hear from parents who encountered barriers to vaccination but were able to overcome them

Activity 6: Teach with Stories Method The Teach-With-Stories Method used with photonovels is a patient (or learner) centered educational approach designed to: Build 3 Kinds of Power Power-with-Others Power-from-Within Power-as-Mastery Honor Latino Cultural Values & Norms Foster Critical Thinking and Behavior Change Create a Safe Space to Discuss Social Determinants of Health

HPV Implementation Project

Demo Site

IndividualSession Tracking Individual Session Tracking

Thank You! QUESTIONS?