Incorporating community based participatory research principles for the development of a HPV prevention program for African American adolescent females and their parents/guardians.
|Abstract:||Culturally competent behavioral risk reduction interventions cannot be designed in isolation. They must be designed in partnership between the researchers and the community of study. Community based participatory research (CBPR) emphasizes engagement between community and research partners with the intention of building community capacity and improving community health. This article describes the application of a CBPR approach toward the development of a pilot HPV prevention program for adolescent African American adolescentfemales and their parents/guardians. The authors outline the use of CBPR principles in four phases: (1) the identification of the community, (2) building on strengths within the community, (3) promoting co-learning and capacity building, and (4) balancing research and community needs. This article also describes challenges and successes in utilizing CBPR methods to design a culturally competent, theory-based intervention to enhance HPV knowledge, awareness, and skill acquisition among African American adolescent females.|
Health education (Usage)
Health education (Methods)
Papillomavirus infections (Prevention)
Papillomavirus infections (Demographic aspects)
Baker, Jillian Lucas
Jemmott, Loretta Sweet
|Publication:||Name: American Journal of Health Studies Publisher: American Journal of Health Studies Audience: Professional Format: Magazine/Journal Subject: Health Copyright: COPYRIGHT 2012 American Journal of Health Studies ISSN: 1090-0500|
|Issue:||Date: Wntr, 2012 Source Volume: 27 Source Issue: 1|
|Topic:||Event Code: 310 Science & research|
|Product:||Product Code: 8000120 Public Health Care; 9005200 Health Programs-Total Govt; 9105200 Health Programs NAICS Code: 62 Health Care and Social Assistance; 923 Administration of Human Resource Programs; 92312 Administration of Public Health Programs|
|Geographic:||Geographic Scope: United States Geographic Code: 1USA United States|
In the U.S., an estimated 75% of women of reproductive age are infected with HPV and most sexually active women will be infected with HPV during their lifetime (Baseman & Koutsky, 2005). Young African American women have among the highest HPV prevalence rates with reported rates of 51% in New York (Burk, Ho, Lempa, Peters, & Bierman, 1996), 64% in Atlanta (Tarkowski et al., 2004), and 90% in Baltimore (Jacobson et al., 2000). For women, the significant disease burden associated with HPV infection is its link to cervical cancer, as 70% of cases are caused by HPV types 16 and 18, and genital warts, 90% of which are caused by HPV types 6 and 11 (NCI, 2007). Racial/ethnic disparities are also found in mortality rates as African American women are 2.2 times more likely to die from cervical cancer than White women (ACS, 2006). In Philadelphia, rates of cervical cancer incidence and mortality are higher than both the state and national average (NCI, 2011). Although screening reduces the risk of cervical cancer, it does not prevent HPV infection. Two HPV vaccines have been licensed and are recommended by national immunization programs in the United States and around the world (Koulova et al., 2008). However, minority females who suffer the disease burden of HPV have lower rates of awareness of the vaccine than white females (Marlow, Wardle, Forster, & Waller, 2009). Also, vaccination rates for vaccines targeting adolescents are historically low unless programs are school based (CDC, 2006; Middleman et al., 2006), and vaccination rates are typically lower in underserved communities.
Effective behavioral interventions can be developed to increase knowledge (including the awareness of the vaccine) and skills that would reduce the risk of HPV infection among adolescent females. We developed the Young Women's Health Empowerment Project (YWHEP)--a HPV prevention research project for underserved adolescent females in Philadelphia. The specific goal of the project was to design, implement, and evaluate a culturally relevant, theory-based, educational intervention for African American adolescent females and their parents/ guardians aimed at increasing HPV awareness and uptake of the HPV vaccine.
Year 1 of the study was devoted to pre-implementation planning for the intervention. A steering committee was developed to guide the research efforts of the project beginning with the pre-implementation phase. The research team was comprised of a unique collaboration of clinical, behavioral, and public health investigators from the University of Pennsylvania (PENN), Cheyney University, Children's Hospital of Philadelphia, Albert Einstein Medical Center, the Southeastern Pennsylvania Family Planning Council, and the City of Philadelphia Department of Public Health. Collaboration was the foundation in the development of this research team, and several of the PENN investigators had collaborated together on past research projects. Several of the researchers discussed the need to use a community based participatory research (CBPR) as a framework for partnering with the community as CBPR emphasizes: (1) the active involvement of community members in the research process (Israel, Schulz, Parker, & Becker, 1998; O'Fallon & Dearry, 2002) and (2) researchers & community partners work collaboratively to define local priorities and perspectives (Cornwall & Jewkes, 1995).
COMMUNITY BASED PARTICIPATORY RESEARCH
Over the last fifteen years, CBPR has gained increased credibility in public health because of its emphasis on the understanding of individuals' health-related experiences and the identification of workable and appropriate services (Heslop, Elsom, & Parker, 2000; Kovacs, 2000). CBPR is a complement to traditional research (which does not actively involve a community in designing projects); it effectively taps into community knowledge to gain insights into persistent social problems and developing solutions (Nyden, 2003). Thus, community participants join researcher teams as partners, rather than subjects. Partners contribute their different strengths and share the responsibilities of the project (Green, et al., 1995). This connectedness allows the community members (who have the experience and knowledge) to share with researchers, from their cultural perspective, their understanding of health problems and allows the community to define and help design activities to promote health in their communities (AHRQ, 2009).
CBPR has three interrelated elements: participation, research, and action (Israel et al., 1998). By emphasizing active involvement in the research by those affected by the problem, CBPR is a "cyclical process of fact finding, action, and reflection, leading to further inquiry and action for change" (Minkler, 2004, p. 686). Fundamentally, its principles include that it is: (1) participatory; (2) cooperative; (3) a co-learning process; (4) a process which involves systems development and local capacity building; (5) an empowering process through which participants can increase control of their lives; and (6) it achieves a balance between research and action (Israel, et al., 1998; Israel et al., 2003).
In this article, we describe four CBPR principles (Israel, et al., 2003) utilized to guide the pre-implementation phase of the YWHEP. These principles included: (1) identification of the community, (2) building on community strengths and resources, (3) promoting co-learning and capacity building among all partners, and (4) balancing research and community needs for mutual benefit and action. Consistent with the recommendations of Israel et al. (2003), these CBPR principles were selected to encourage collaboration between researchers and community members in order to successfully execute the research activities in the pre-implementation phase.
APPLICATION OF CBPR PRINCIPLES
CBPR PRINCIPLE #1: IDENTIFICATION OF THE COMMUNITY
The first CBPR principle executed was identification of the community, which is a central tenet of CBPR (Israel, et al., 2003). In this phase, the priorities were to: (1) recruit community members from the targeted population to participate in focus groups and (2) identify community representatives to serve as community advisory board members on the project. Communities can be identified by a defined geographic neighborhood (Israel, et al., 2003). Thus, the University of Pennsylvania's Cartographic Modeling Lab identified five areas in Philadelphia for study implementation; each area contained 3-4 named neighborhoods as defined by Philadelphia residents. Study areas were chosen based on demographic and geographic characteristics, which were: a) having a predominately African American, low-income population with distinct neighborhood boundaries and b) having a resident population that included at least 5,000 female adolescents ages 9 to 19 according to 2000 census tract data. Once the community was determined, the next step was to identify community members to participate in focus groups.
Research coordinators conducted outreach efforts in the 5 study areas to engage neighborhood residents and assess their interest in participating in focus group sessions. The coordinators also spoke with staff members at local recreation centers, public library branches, schools, healthcare facilities, and CBOs in order to gauge their interest in hosting focus group sessions. A total of 65 organizations were contacted via phone calls, mailing/faxing study information, and face-to-face visits. Project buy-in and support was received from 10 organizations (ex. neighborhood recreation centers, alternative or charter schools, and other CBOs) which agreed to host focus group sessions with African American adolescent females and/or their parents/guardians, and largely recruited participants for the groups.
CBPR PRINCIPLE #2: BUILDING ON STRENGTHS AND RESOURCES WITHIN THE COMMUNITY
According to Israel et. al (2003), CBPR projects should utilize representatives and resources from health and human service organizations, community based organizations (CBOs), and the community at large (Israel, et al., 2003). In execution of this principle, the steering committee decided there was a need for an adult community advisory board and a teen advisory board since the intervention would be developed for adolescent females and their parents/guardians. To capitalize on existing strengths and resources from the community, YWHEP staff identified and recommended community advisory board (CAB) members from their outreach efforts in the targeted study areas. Once identified, the CAB members met on a monthly basis throughout the pre-implementation phase. The CAB members: (a) shared their contacts to other local recreation centers, community based organizations, schools, and churches, (b) provided feedback on the intervention design based on the results of focus groups, and (c) gave recommendations for recruitment procedures for the intervention. Suggestions included setting rates of study compensation for teens and adults, increasing the parent compensation from $20 to $50 to allow for childcare and other expenses that would facilitate parent participation, and having research staff members wear T-shirts with the project logo to clearly identify their activities in the community. The CAB members also provided entree to the community that the project staff may not have been granted otherwise.
CBPR PRINCIPLE #3 PROMOTING CO-LEARNING AND CAPACITY BUILDING AMONG ALL PARTNERS
One of the main goals of CBPR is to foster knowledge and understanding of a health issue and integrate the knowledge gained to improve the health and quality of life of community members (Israel, et al., 1998; Israel, et al., 2003). In an effort to disseminate new knowledge and promote co-learning between community and research partners, steering committee and CAB members decided that focus groups needed to be conducted with the targeted population to help inform development of the intervention. As a result of the community identification process, the project took on a collaborative approach whereby researchers and community partners brought their different and unique skills, in a process of mutual learning (Cornwall & Jewkes, 1995), with the goal of developing a HPV prevention program that would benefit the health status of African American adolescent females. Adolescent and parent/guardian participants for the focus groups were recruited primarily by the CAB members and staff referrals from the ten local organizations that agreed to host the focus groups. In addition, street outreach was conducted and flyers advertising the focus groups were posted in or near these locations by YWHEP staff.
The goals of the focus groups were to elicit: (1) knowledge about HPV and the HPV vaccine, (2) salient beliefs about the HPV vaccine, (3) the consequences of getting vaccinated and (4) normative influences on vaccination behaviors. Participants were also asked to share their experiences with and access to health care, strategies for talking to others about the vaccination, and recommendations for the type of HPV prevention intervention that would appeal to them and others like them in their communities. Overall, the focus groups were well received by community organizations, participants, and CAB members. Focus group participants provided recommendations for the design and content of the interventions and educational materials. The process also sparked the interest of community members who would also later serve on the adult and teen CABs for the study. These connections and relationships were maintained and built upon for implementation of the subsequent study intervention.
CBPR PRINCIPLE #4: BALANCING RESEARCH AND COMMUNITY NEEDS FOR MUTUAL BENEFIT AND ACTION
In CBPR, knowledge and social change efforts are integrated in a manner suitable for addressing community concerns that will have benefit for all partners (Israel, et al., 2003). This principle was most clearly reflected in the iterative development of the pilot curricula with our target community. A more detailed account of this process is provided elsewhere (Brawner et al.).
Briefly, the intervention curricula were designed based on the Theory of Planned Behavior (TPB) (Azjen, 1991). Theoretically driven elicitation research through focus groups and surveys provided an opportunity to elucidate the social psychological factors that underlie HPV vaccination intentions (N = 141). These data were subsequently used to translate the identified theoretical mediators of behavioral change into the curricula content. For example, elicitation findings demonstrated that adolescents' attitudes, normative beliefs and perceived behavioral control all significantly explained their intention to get the HPV vaccine (r2 = 0.42-0.64, r2 = 0.62-0.79 and r2 = 0.29-0.37 respectively). Our goal in developing the curricula, therefore, was to overcome negative cultural beliefs and bolster positive attitudes associated with HPV vaccination, while increasing skills and strategies to get the vaccine and decrease HPV risk.
The adolescents stated that close family or household members would be influential in their decision to get the HPV vaccine. Additionally, parents/guardians revealed that the opportunity to participate in an intervention would provide them with accurate information to share with their daughters about HPV and the HPV vaccine. Thus, two separate curricula were developed--an adolescent version ("Help Yourself! Protect Yourself!") and a parent/guardian version ("Educate! Don't Wait!"). The curricula names were based on suggestions from the focus group participants. The "Help Yourself! Protect Yourself!", was designed for African American adolescent females between the ages of 13 to 18 years old. This curriculum provides participants with the tools they need to reduce their risk for HPV infection through enhanced knowledge and skills related to HPV and the HPV vaccine, abstinence and condom use, and communication with parents/guardians and healthcare providers. Similar to the adolescent curriculum, "Educate, Don't Wait!" was designed to provide parents/guardians of adolescent girls (ages 9 to 18 years old) with the knowledge and skills to help their daughters reduce their risk of getting HPV. The goals and activities in the parent/guardian curriculum mirror those of the adolescent curriculum, but reflect their distinct role in considering HPV vaccination for their daughters. The structurally similar curricula have two hours of content divided across four, 30-minute modules. The intervention was implemented in one single session, and the content was delivered with adolescents and parents/guardians in separate groups.
In CBPR, a power-sharing process is fostered that acknowledges the marginalization of certain communities and reinforces the concepts of mutual decision-making and problem solving in research designed to reduce health disparities (Davis & Reid, 1999; Israel, et al., 2003; Kone et al., 2000; Sullivan et al., 2001). Several steps were taken to ensure that we incorporated the input of our community representatives throughout the process. First, the research team members who worked with the community from the beginning of the project, including conducting the focus groups, were also responsible for developing the curricula. This helped to ensure that the voices of the community members were heard and that their input was incorporated into the culturally-situated interventions. Second, focus group attendees suggested that a group format would allow participants to interact with each other and benefit from a group-learning environment. As a result, the intervention was designed for delivery in a small group format. Lastly, the curricula were reviewed by members of the steering committee and both CABs prior to pilot testing. Additional revisions to the curricula were made based on their feedback on the content and format, and finalized versions were drafted for the intervention pilot.
The steering committee and CAB members had different perspectives on whether the interventions were ready for study implementation. In CBPR, the difference of perspectives among partners must be balanced with the goal of serving the community (Israel, et al., 2003). This principle was adhered to in our project and provided the foundation for subsequent dialogue that occurred between the steering committee and community partners. The steering committee members deemed the intervention as theoretically sound and ready for study implementation, and some wanted to implement the intervention without piloting it, before the community lost interest in the project. For their part, CAB members were impressed by the content of both interventions and shared that the activities were not only informative but also fun and entertaining. However, they were concerned about whether the interventions were ready for full implementation. Thus, all members discussed and concluded that conducting a pilot of both interventions was necessary before they were implemented in the larger study.
The CAB members recruited African American adolescent females and parents/guardians to participate in the pilot intervention sessions. The pilot interventions allowed the researchers to evaluate whether the interventions were likely to affect the conceptual variables and to identify any problematic features of the curricula. The CAB members discovered that the participants viewed the interventions as valuable and entertaining. After the curricula were revised based on findings from piloting, all partners decided that the curricula were ready for study implementation. The intervention was designed for trained facilitators to conduct group sessions for both curricula with groups of no more than 10 participants. The sessions were held in private rooms of recreation centers, libraries, charter schools, and other CBOs identified from the pre-implementation phase and during project roll-out. Data analysis to determine the effect of the intervention on participants' attitudes, beliefs, intentions and subsequent vaccination is currently underway.
DISCUSSION-IMPLICATIONS FOR PUBLIC HEALTH PRACTICE
Utilization of a CBPR framework results in successes and challenges that researchers will encounter. CBPR efforts involve a series of trials and errors through the iterative processes of identifying problems and creating solutions to improve the lives of a community (Hagey, 1997; Lindsey & McGuinness, 1998). One primary challenge in this study was cultural mistrust; as cultural mistrust can prevent community members from participating in research projects (Green & Mercer, 2001). In the pre-implementation phase, research staff members were trained in research ethics, qualitative methodologies, and community-based recruitment strategies to be able to effectively respond to issues of cultural and historical mistrust. These trainings equipped the project staff to be attuned to community concerns and to promote respect, trust, and collaboration between researchers and community members. The research team endeavored to develop trust among community partners by listening to their needs and clearly discussing the goals and capabilities of the project. Researchers and project staff spent a significant amount of hands on time identifying community members and key stakeholders. Cold phone calls to organizations were unsuccessful in attempting to reach community representatives. Due to research mistrust in some communities, certain organizations required more outreach efforts than others. A number of community representatives and staff members contacted shared that they had previously participated in research projects and were unhappy with their experiences. As a result, some organizations ultimately did not participate in the study due to past research experiences and institutional mistrust.
One CBPR success in this study included the commitment and participation of the community members including the CAB members and focus group participants. A major challenge of CBPR partnerships is ensuring community participation and influence (Green & Mercer, 2001; Israel, et al., 1998; Minkler, 2004). Further, for development of effective interventions for priority populations, active participation of the relevant community is required (Dixon & Roubideaux, 2001; L. Green, Daniel, & Novick, 2001; Healton, 2004; Huff & Kline, 1999; Israel, et al., 1998). Researchers made conscious efforts to respect and value the input of the community partners. A co-learning process was created as research and community partners were provided with various opportunities including monthly CAB meetings to share their distinct knowledge sets and resources. Both adolescent and adult CAB members learned more about how research studies and educational interventions were designed and how standard research procedures such as informed consent and ethical review were implemented. Working in partnership with community members resulted in the development of a theoretically sound and culturally relevant HPV prevention curriculum and capitalized on assets that existed in the community. This also facilitated the identification of neighborhood institutions that were willing to host focus group and intervention sessions. The perspectives and recommendations of focus group participants and CAB members were highly influential in the intervention's design, as their levels of knowledge and awareness, concerns, and preferences were taken into account in designing both the adolescent and parent/guardian interventions. The end result of the pre-implementation phase was development of substantial partnerships that had influential effects throughout the study and potentially in future research projects in the same or similar neighborhoods. They also were able to see how the knowledge they shared was incorporated into the development of the intervention curricula.
Another CBPR success was the lasting partnerships developed between the community members and researchers during the pre-implementation phase that continued throughout the entirety of the study. Partnership between communities and researchers is imperative for the development of a culturally appropriate and effective intervention (Horn, McCracken, Dino, & Brayboy, 2006).
CBPR emphasizes inclusion of "research participants" and communities in the development and implementation of interventions to address public health problems (Burdine, McLeroy, Blakely, Wendel, & Felix, 2010). This project was not originally designed as a CBPR trial; however, the researchers recognized the value of using CBPR principles to enhance the research aims. Although CBPR may not be appropriate in all research studies, there are numerous benefits to incorporating CBPR principles (Israel et al., 2005). In this project, a CBPR framework resulted in: (a) enhanced knowledge and capacity building between community and research partners (b) shared power and decision making between partners and; (c) the development of two theory-based, culturally relevant HPV prevention curricula based on the voices of the community. The project established a successful balance between research and action as a result of community and research members being equal partners. CBPR benefits the community, stakeholders, and researchers alike by creating a bridge between academia and communities through the use of shared knowledge and lived-experiences (Savage et al., 2006, p.476). More public researchers, particularly those who work with marginalized communities, would benefit from using CBPR principles to engage community members in the development of effective behavioral interventions.
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Jillian Lucas Baker, DrPH, EdM, is affiliated with the School of Nursing & Health Sciences, La Salle University. Bridgette Brawner, PhD, APRN, is affiliated with the Center for Health Equity Research, School of Nursing, University of Pennsylvania. Amy Leader, DrPH, MPH, is affiliated with the Division of Population Science, Department of Medical Oncology, Thomas Jefferson University. Chelsea Voytek, MPH, is affiliated with the HIV Prevention Research Division, Department of Psychiatry, University of Pennsylvania. Loretta sweet Jemmott, PhD, RN, FAAN, is affiliated with the Center for Health Equity Research, School of Nursing, University of Pennsylvania. Ian Frank, MD, is affiliated with Division of Infectious Diseases, School of Medicine, University of Pennsylvania. Corresponding Author: Jillian Lucas Baker, DrPH, EdM, Assistant Professor, Master of Public Health (MPH) Program, La Salle University, School of Nursing and Health Sciences, St. Benilde Tower-Office 3334, 1900 W. Olney Ave., Philadelphia, PA 19141, Office Phone-215-991-2274, Email: firstname.lastname@example.org.
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