J Canc Educ DOI 10.1007/s13187-014-0607-0
Photonovels: An Innovative Approach to Address Health Disparities and Sustainability Kara McGinnis & F. Alejandro Montiel-Ishino & Maisha Kambon Standifer & Deanna Wathington & Johnetta Goldsmith & Julie A. Baldwin
# Springer Science+Business Media New York 2014
Abstract Medically underserved and underrepresented communities have high rates of health disparities. In the greater Tampa Bay area, communities of color are disproportionately affected by chronic diseases such as cancer. In response to these concerns and as part of a lay health advisory program being implemented by the Center for Equal Health, a University of South Florida/H. Lee Moffitt Cancer Center & Research Institute partnership, our group created a photonovel, an educational tool which explains topics using a graphic novel style. The photonovel was designed to educate community members about prostate cancer and was compared to standard cancer educational materials currently used for cancer outreach. We found that our photonovel served as an effective health education tool to address cancer health disparities in medically underserved and underrepresented populations in Tampa Bay. Keywords Health disparities . Photonovels . Cultural competence . Educational material
Introduction Ethnic/racial minorities and medically underrepresented communities have a higher prevalence of chronic health conditions Electronic supplementary material The online version of this article (doi:10.1007/s13187-014-0607-0) contains supplementary material, which is available to authorized users. K. McGinnis : F. A. Montiel-Ishino : M. K. Standifer (*) : D. Wathington : J. A. Baldwin College of Public Health, University of South Florida, c/o Julie Baldwin, 13201 Bruce B. Downs Blvd. MDC 56, Tampa, FL 33612, USA e-mail: [email protected] J. Goldsmith The Heart of East Tampa Front Porch, Tampa, FL, USA
and diseases, including cancer [9, 17]. More specifically, African-Americans are more likely to develop cancer than any other racial or ethnic group and possess the highest cancer mortality rate [17]. African-Americans have the highest prostate cancer incidence and death rates compared to all other racial or ethnic groups both nationally and in the state of Florida. In Florida, African-Americans have a prostate cancer incidence rate 48 % higher than whites and a mortality rate 2.8 times higher [2] Furthermore, the percentage of prostate cases with an advanced stage diagnosis is greater among blacks than whites [2]. Reducing the unequal burden of cancer in underserved populations requires the integration and engagement of collaborative research studies to improve cancer outcomes in those communities experiencing disparity [16]. There is also a general lack of cancer awareness, education, prevention, screening, and treatment in medically underserved and underrepresented areas [8, 15]. Thus, educational materials must be designed to address the needs of underrepresented communities while maintaining appropriate literacy levels, cultural relevancy, and respective buy-in. Through a National Institute on Minority Health and Health Disparities Transdisciplinary Center of Excellence award, the University of South Florida and Moffitt Cancer Center established the transdisciplinary Center for Equal Health (CEH); the CEG is collaboratively investigating cancer health disparities, their origins, and potential solutions for reduction and elimination of health inequities among racial/ ethnic minorities and the medically underserved. CEH has been working with a local organization, Heart of East Tampa Front Porch, in providing cancer education and screening to underserved East Tampa populations that are predominantly African-American. Information regarding prostate cancer awareness for men has been identified as an area of need. New guidelines at the time of this research from the US Preventive Services Task Force emphasized the importance
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of informed decision-making regarding screening services [24], but most educational materials did not include this important concept. The East Tampa community was consulted to determine what community members felt they needed in terms of prostate cancer information. The local community sentiment was that culturally appropriate and low-literacy educational tools were needed for prostate cancer awareness and screening options. As traditional pamphlets, brochures, and flip charts have had limited success in non-English speaking or culturally diverse populations with low literacy [12], photonovels were identified as cost-effective and culturally appropriate educational tools. A photonovel is designed similarly to a comic book and is a low literacy and image-intensive narrative that helps readers become more aware of and knowledgeable about a topic [20]. Historically common in Latin America [3], photonovels are gaining momentum in health education because the photographs are identifiable to users, the story is interesting and emotional, and the limited script allows for an extended user population [19, 22]. The most successful photonovels are inspired by a community’s needs and include the community taking an active part in its creation [10, 13, 18]. CEH graduate students in anthropology, public health, and fine arts were awarded a University of South Florida Graduate Student Challenge Grant to work with the East Tampa community to design the photonovel. The photonovel began as entertainment stories in the midtwentieth century in Europe, Latin America, and the southern USA and gradually moved into the educational and political realm in the 1970s [3]. Health educators speak to this history and define photonovels as stories using pictures or comics to explain, examine, or teach a health issue. Included as part of the trend of entertainment-education [1, 23], photonovels have been used by various populations and for multiple health education topics. Recent applications of the photonovel in health education have included populations and topics such as caretakers of children to prevent lead poisoning [1], youth in South Africa and STI prevention [10], and Latina immigrants and folic acid awareness [19]. Despite the many examples of photonovels, the academic literature regarding their effectiveness remains limited. Part of this may be that since the 1990s, the term has been confused with what is now differentiated as photo voice, a method where participants themselves take the photos and add narrative [25]. Coinciding with the rise in popularity of photo voice, the recent academic literature has overlooked the traditional use of photonovels in health education. This project hopes to bring photonovels back into discussions in the literature and to emphasize their potential usefulness in populations that still look to
print media for most of their entertainment and information. Underlying theoretical principles that guided the development of the photonovel include Paulo Freire’s critical pedagogy and community-based participatory research (CBPR) [7]. Freire’s focus is in educational dimensions of community empowerment that include action research applications, emphasizing that if communities are included in the creation of education, they will feel ownership over the knowledge [7]. CBPR fosters an environment for the production of mutually beneficial goals between community members and researchers [16]. Thus, community members were included in all parts of our planning, design, formation, and dissemination process, to foster their sense of empowerment, and to ensure a useful product. The primary research questions of this study were: Are photonovels an adequate and effective educational tool in prostate cancer education? If so, how will the community respond to them? Coming from an ethnographic premise, CBPR, and participatory action research [8], we formulated an exploratory and explanatory model to address the effectiveness of photonovels in the community. The efforts of this project have the potential to yield an innovative model of community engagement and outreach that can be readily exported and transferred for broad application to other settings and populations for reducing cancer health disparities.
Methods Overview This study involved three phases: (1) community health knowledge and needs assessment, (2) product development, and (3) photonovel testing, revising, and dissemination, which are described with the methods used in each phase in Table 1. Overall, four focus groups were conducted to accomplish these phases. Methods included qualitative responses from the focus groups and learner verification methods, which were used to assess the photonovel for literacy components including comprehension, knowledge change, esthetics, and likeability. This study was approved by the Institutional Review Board of the Table 1 Photonovel phases and methods of assessment Phase 1: community health knowledge and needs assessment
Phase 2: product development and pilot testing
Phase 3: photonovel testing, final revision, and dissemination
Literature review Learner verification questionnaires Focus groups 1 and 2
Script development Layout of photonovel
Focus group 4 Learner verification questionnaires
Focus group 3 (pilot testing)
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University of South Florida. Our Community Partners advised us and worked with us at all phases.
Recruitment The recruiters for our project were two women from our Community Partner organization. The community members recruited for the focus groups were representative of the overall target community, African-American men, and their families in a community with a high risk of prostate cancer. The Community Partners located participants and scheduled the focus groups through word-of-mouth at community events and churches and an advertisement in the local community newspaper. In order to accommodate poor participation rates in this area, the eligibility criteria were prioritized from highest to lowest in the following categories: African-American men over 40 years of age, African-American men over 18 years of age, and African-American women over 40 years of age.
Phase I: Community Health Knowledge and Needs Assessment The purpose of this phase was to determine community knowledge regarding prostate cancer, the positives and negatives of pre-existing educational brochures, and how messages could be improved. The community needs assessment included: (1) a literature review of existing print materials about prostate cancer (i.e., brochures, etc.) developed by national cancer agencies, (2) learner verification questionnaires at the start of focus groups to garner quantitative data on the opinions of the preexisting education tools, and (3) two focus group discussions to assess the benefits and shortcomings of the current literature and resources available. The focus groups were composed of African-American men over the age of 18. The existing prostate cancer brochures came from the Centers for Disease Control and Prevention (brochure no. 1), National Institutes of Health (brochure no. 2), and American Cancer Society (brochure no. 3). Phase II: Product Development and Pilot Testing
Focus Group Procedures All of the focus groups (1–4) were conducted at the offices of our Community Partner. The moderator used a focus group guide to assist the discussion. Written informed consent was obtained from all participants. Each focus group began with the participants looking through educational brochures. In focus groups 1, 2, and 4, the participants also filled out a learner verification questionnaire. This questionnaire assessed health literacy materials for a variety of criteria such as “effectiveness.” The discussion portion followed. The moderator used blank sheets of paper to write down ideas and themes that participants found particularly important and a second researcher took notes. At the completion of each focus group, participants were provided an opportunity to ask the research staff questions if they had any. Grounded theory and basic frequency distributions of the learner verification questionnaire were used to analyze the data.
Fig. 1 The photonovel was developed using the US Preventive Services Task Force guidelines for informed decisionmaking, important community themes discussed in the phase I focus groups, and advice and recommendations relating directly to layout and literacy from the pre-existing brochures
The photonovel was developed using the US Preventive Services Task Force guidelines for informed decision-making [24], important community themes discussed in the phase I focus groups, and advice and recommendations relating directly to layout and literacy from the pre-existing brochures (see Fig. 1). An emphasis was placed on the informed decision-making concept because of the new screening guidelines. After a script was written, our Community Partner provided edits until the storyline was agreed upon. The Community Partner took a lead in finding volunteers to participate in the photo shoot. During the photo shoot, community participants and partners were there to give advice on location, props, shots, and the script. An additional focus group was convened to assess the photonovel draft, first using learner verification methods and then holding a group discussion to obtain qualitative comments. The learner verification responses and the likes and dislikes of the group were used to edit the photonovel.
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Phase III: Photonovel Testing, Final Revision, and Dissemination As in phase I, the focus group participants first reviewed brochures using the learner verification questionnaire; however, this phase included the photonovel in addition to the original three brochures. A focus group discussion was then conducted on the positives and negatives of each educational resource. A final edit was made to the photonovel after this focus group. The finished photonovel was printed and given to community leaders and lay health advisors (LHAs) to aid in educating the community. Additionally, a downloadable version was placed on the CEH website to be accessible to other communities free of charge.
Results The results from the community needs assessment and the four focus groups are presented below. A total of 20 (n = 20) African-American participants from East Tampa participated in the focus groups and accompanying questionnaires. No individual participated in more than one group. Sixteen of these participants were males (n = 16) and four were females (n = 4). The females participated after the photonovel was designed in focus groups 3 and 4. Of the respondents, 83 % were 45–64 years old and married and 50 % had a high school education or higher. The analysis phase of this study consisted of two parts: (1) quantitative analysis of the learner verification questions answered by the participants (focus groups 1, 2, and 4) and (2) analysis of the qualitative discussion (focus groups 1–4). Phase I: Literature Review and Focus Groups 1 and 2 In the literature that has been published, photonovels have been shown effective at increasing knowledge, changing attitudes, and increasing intention to perform behaviors [10], increasing self-efficacy [1], being more readable, increasing factual recall, having general credibility, and improving attitudes toward future involvement in health and safety issues as compared to a NCI pamphlet [20] and creating positive behavior [13] changes [13]. However, photonovels have been shown to be limited as they do not necessarily teach the skills needed for behavior change [10] nor do they remove the actual barriers that exist [11]. Despite these limitations, photonovels have been shown effective as a form of entertainment-health education. The literature indicates this is because they are designed for low-literacy audiences [14, 18, 22], use modeling, which portrays characters that look like the reader and shows that someone like the reader can do the intended intervention [1, 20], use stories that increase emotional arousal [1], are something people will “pay attention to” [19], and
usually have community involvement which increases empowerment and participatory methods [18, 20–22]. Focus groups 1 and 2 consisted a total of eight AfricanAmerican males over the age of 18. Each of the three resource materials (brochures 1, 2, and 3) was assessed for appeal, effectiveness, and likeability. Overall, participants stated that for appeal, they were drawn to “directness,” “straightforwardness,” “simple,” and “nonintimidating” text and layout. They were responsive to multiple ethnicities and photos. Additionally, bolded words with a glossary and local resources listed on the brochures were considered positive attributes. Participants also liked brochures that had clearly defined sections and flowed well. Negative responses to the appeal of the brochures included lack of graphics, high-reading levels, and density (quantity) of material. Brochure 1 was considered effective at prompting readers to take action in their health, but less than half of the participants truly understood what cancer screening was being depicted and if it could actually help them answer questions. Brochure 2 scored similarly to brochure 1, except that a majority of respondents felt that this material would help someone with cancer answer their questions. Brochure 3 scored the highest in all of our effectiveness categories, with over 71 % of respondents understanding the cancer screening being depicted, believing that the material could help someone with cancer, feeling the brochure was relevant, and indicating effectiveness at prompting action. Brochures scored well in the “likeability” category for ease of understanding and directness. While brochure 3 scored highest in the effectiveness category, it was important to note that participants were less enthusiastic that it would be useful for the community even though they felt it would receive a positive reaction. This material was very lengthy, and thus, while the information was thorough, it may have been intimidating for participants or irrelevant for someone making the decision to screen or not for prostate cancer. Qualitative analysis revealed various themes concerning health brochures and health care. The themes that emerged from the discussion can be summarized in one quote, “If you want to hide knowledge, put it in a book.” This refers both to the lack of health education materials available and the need for literacy and individual learning skills to access this knowledge, two themes which emerged throughout discussion. First, access to health materials appeared poor. Every participant in the focus groups had never seen the health brochures concerning men’s health and prostate cancer. As such, they were curious as to where these materials could be found and, more importantly, how these brochures could be made readily available. Additionally, two of the men engaged in behavioral cues that may indicate low literacy. They took longer to read through the materials, used their fingers to trace words, became noticeably uncomfortable during the learner verification assessment, commented that they did not know reading was
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going to be a part of the group, and could not complete the questionnaires [4]. In addition to the theme of access to health materials, the theme of needing to understand the content emerged as well. The health materials we provided for the focus groups were regarded as “good,” but men commented that the language was hard to understand and the long length. Therefore, while men remarked that the content was new to them and they were interested in learning about the topic, they still needed the skills necessary to read and comprehend the information. Overall, the men were interested in reading the brochures as the knowledge contained within them was new, and they had never seen the brochures before. However, literacy was a major issue, and the brochures took quite a lot of time for some men to read. The men indicated that these brochures would be helpful for a man who really needed to know about prostate cancer, but that they would probably not be picked up at the doctor’s office to browse through while waiting. When asked what would make a man pick up a brochure to skim through, they commented that it would need to be eyecatching, have more pictures, and be less intimidating. Phase II: Focus Group 3 Based on the comments, we created our photonovel to include eye-catching layouts, familiar pictures, and a glossary. Focus group 3 assessed the photonovel alone using qualitative data and health literacy materials. There were six participants, of which two were women. Overall, the photonovel was well received. The participants enjoyed the story and the pictures, as well as the fact that they felt they could relate to the characters. Major criticisms included font size, spelling errors, speech bubbles that were too long, and a lack of a resource listing. Using the comments from focus group 3, the photonovel was revised (see Fig. 2). The edits included fixing spelling errors, increasing font size when possible, and creating more speech bubbles. We also added resources that people could utilize for more information. Phase III: Focus Group 4 During focus group 4, participants assessed the photonovel as one of a set of health education materials. There were three men and two women present at this focus group. The health education brochures were the same as in focus groups 1 and 2, with the addition of the photonovel. Materials were again assessed on appeal, effectiveness, and likeability using the learner verification questionnaire. When compared to the other materials, the photonovel was considered more “new and different” than other ways of explaining health promotion. Overall, the appeal was good, but people were concerned about the cover, which was lacking
Fig. 2 The edits included fixing spelling errors, increasing font size when possible, and creating more speech bubbles. We also added resources that people could utilize for more information
an eye-catching photo and considered dull; unfortunately, it could not be edited before dissemination. The photonovel was also considered effective; however, it was limited compared to the other materials in that it concentrated on the decision-making process to get screened and not on all aspects of prostate cancer. While this was a limitation, it was also the only material that was recent enough to follow the new recommended guidelines of informed decision-making instead of screening [24]. The photonovel scored above the median of the scale for having a strong message, having visuals one could relate to, providing a good resource for one’s community, and prompting one to take action. Overall, the participants positively scored the likability of the photonovel. They liked that it told a story, was simple, and that having a story made them more likely to actually read the entire brochure, as they wanted to find out what happened to the characters. The participants said it made them curious to begin thinking about prostate cancer as a reality for them. As the photonovel deals only with the decision to get screened or not to get screened, participants said it provided
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readers with a good starting point to have a discussion with their doctor, family, or friends about what is best for them. They also felt that it clearly identified the issues of being screened and would be a good tool to use while discussing options with others. Additionally, they favored the pictures and felt they could relate to the men. However, the focus group participants also enjoyed the CDC prostate cancer booklet for the depth of information available. Participants felt that this would be the appropriate material to have available to the community for those already facing prostate cancer and perhaps a good supplement to the photonovel for those seeking more expansive information. The largest complaint about the photonovel was the cover, which participants said did not represent how “vibrant” the inside was. It was recommended to make the title more like a comic book title and to add better pictures. Respondents particularly thought that a photo of the main character looking deep in thought would provoke someone to pick up the material and read through the information. In sum, the participants really enjoyed the photonovel and said that it was totally different from anything they had seen before.
Discussion Recognizing the diversity of the photonovel, this project utilized this health education option and designed one to aid African-American males and their families making an informed decision about prostate cancer screening. New guidelines from the US Preventive Services Task Force recommend that men are fully informed of the risks and benefits of screening for prostate cancer before going through the process [24]. We followed methods similar to others in the literature [6, 19], including using qualitative approaches for material development and pretesting of the product. The need to develop this educational tool was driven by a community organization that is partnered with the Center for Equal Health, which requested for more culturally competent and lowliteracy educational materials to aid in their outreach. Because very specific information has to be included to explain the informed consent process, the researchers wrote most of the script. However, community members were involved throughout the process, giving feedback on pre-existing materials, being in the photographs, and making comments and recommendations about the storyline. The use of community members throughout the production of the photonovel ensured cultural relevance. The final product was well liked and informative. Limitations to the study exist. The surveying of the preexisting print materials at the start of our focus groups lasted longer than expected and took away from the discussion. Many participants thoroughly read the materials as opposed to skimming them, and a few had literacy issues. Additionally,
our final topic of the photonovel, informed decision-making about prostate cancer screening, was only a small portion of most of the other comparable educational materials. Therefore, while we obtained a great idea of the appeal, effectiveness, and likeability of the photonovel, people commented that it lacked information in comparison to other brochures that dealt not only with decision-making but also treatment information. However, the photonovel was the only brochure to follow the most updated guidelines of an emphasis on informed decision-making. Finally, this was a convenience sample and relied primarily on qualitative data. While the target community was represented, there may have been missed opinions from community members less involved with the community organizations that aided in recruitment. In addition, it was difficult to fill the spots even with the baking of our community partners. There were important findings for future studies and health education opportunities. First, recognizing that low literacy does exist in the population validates the need for more materials targeting this group. Secondly, because some brochures tested very positively possibly because they contained more information about prostate cancer, these have been recommended to our community organizations and LHAs to share with families that are looking for more in-depth information after an abnormal screening result or a cancer diagnosis. We hope that the photonovel can be used to promote informed decision-making regarding prostate cancer screening, and that these brochures can be provided if more information is necessary. Recognizing that our population includes low-literacy members and those who traditionally do not utilize healthcare services as often as other populations, the importance of providing entertainment-education options tailored for them becomes even more critical. Additionally, some adaptations on the photonovel could prove promising in the future. These include using telenovelas, where the story is an actual video [1] and online photonovels which include sound and voiceovers that speak the text [5]. More research into the cost-effectiveness of these new approaches and the accessibility of different populations to the Internet will help future researchers continue to reach this marginalized community. Success with the population could also inform research into the use of photonovels for other underserved populations.
Conclusion A photonovel is an effective health education material that combines low literacy and cultural competency in an entertaining format to educate about an issue. The photonovel described in this paper focuses on the issue of informed decision-making regarding screening for prostate cancer, currently an ethical concern for public health practitioners and
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medical providers. It targets low-income, African-American men who are both at high risk for prostate cancer and often struggle to access health-care services. It is written for lowliteracy adults and emphasizes family and provider importance in making decisions. By using community members in the actual photonovel, modeling is achieved and readers are encouraged to have similar discussions with their own families and health-care providers. This photonovel is intended to complement existing prostate cancer education materials, as there are no other widely available materials concerning the informed decision-making process. As such, the Center for Equal Health, community organizations, and other health outreach centers are excited about the creation of this photonovel. An electronic copy of the photonovel has been given to the Community Partner that aided the researchers with the focus groups. They will be able to reprint and disseminate the photonovel to community members through health fairs, churches, and other health education forums. The copy is also available on the website www. centerforequalhealth.org so that other communities may utilize this resource. We recommend that communities verify that this is well received in their community before disseminating widely, as different communities may respond differently to the dialogue and photographs used in our product. By integrating the current literature on health promotion materials, community stakeholders, and community participants, we created an effective health promotion material that was community-driven. The photonovel not only filled a large gap in the prostate cancer health promotion materials (informed decision-making) but it did so in a low literacy and culturally competent form that highlighted the African-American community and the importance of family and provider discussion before making decisions. Acknowledgments The authors would like to thank The Graduate School of the University of South Florida who funded this project and Dr. Karen Liller, Ph.D., Dean of the Graduate School, and Miranda Holloway, B.S. and Christopher James Otten, M.F.A. who contributed to the project design and implementation. Conflict of Interest The authors declare that they have no conflict of interest.
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Photonovels: An Innovative Approach to Address Health Disparities and Sustainability Kara McGinnis & F. Alejandro Montiel-Ishino & Maisha Kambon Standifer & Deanna Wathington & Johnetta Goldsmith & Julie A. Baldwin
# Springer Science+Business Media New York 2014
Abstract Medically underserved and underrepresented communities have high rates of health disparities. In the greater Tampa Bay area, communities of color are disproportionately affected by chronic diseases such as cancer. In response to these concerns and as part of a lay health advisory program being implemented by the Center for Equal Health, a University of South Florida/H. Lee Moffitt Cancer Center & Research Institute partnership, our group created a photonovel, an educational tool which explains topics using a graphic novel style. The photonovel was designed to educate community members about prostate cancer and was compared to standard cancer educational materials currently used for cancer outreach. We found that our photonovel served as an effective health education tool to address cancer health disparities in medically underserved and underrepresented populations in Tampa Bay. Keywords Health disparities . Photonovels . Cultural competence . Educational material
Introduction Ethnic/racial minorities and medically underrepresented communities have a higher prevalence of chronic health conditions Electronic supplementary material The online version of this article (doi:10.1007/s13187-014-0607-0) contains supplementary material, which is available to authorized users. K. McGinnis : F. A. Montiel-Ishino : M. K. Standifer (*) : D. Wathington : J. A. Baldwin College of Public Health, University of South Florida, c/o Julie Baldwin, 13201 Bruce B. Downs Blvd. MDC 56, Tampa, FL 33612, USA e-mail: [email protected] J. Goldsmith The Heart of East Tampa Front Porch, Tampa, FL, USA
and diseases, including cancer [9, 17]. More specifically, African-Americans are more likely to develop cancer than any other racial or ethnic group and possess the highest cancer mortality rate [17]. African-Americans have the highest prostate cancer incidence and death rates compared to all other racial or ethnic groups both nationally and in the state of Florida. In Florida, African-Americans have a prostate cancer incidence rate 48 % higher than whites and a mortality rate 2.8 times higher [2] Furthermore, the percentage of prostate cases with an advanced stage diagnosis is greater among blacks than whites [2]. Reducing the unequal burden of cancer in underserved populations requires the integration and engagement of collaborative research studies to improve cancer outcomes in those communities experiencing disparity [16]. There is also a general lack of cancer awareness, education, prevention, screening, and treatment in medically underserved and underrepresented areas [8, 15]. Thus, educational materials must be designed to address the needs of underrepresented communities while maintaining appropriate literacy levels, cultural relevancy, and respective buy-in. Through a National Institute on Minority Health and Health Disparities Transdisciplinary Center of Excellence award, the University of South Florida and Moffitt Cancer Center established the transdisciplinary Center for Equal Health (CEH); the CEG is collaboratively investigating cancer health disparities, their origins, and potential solutions for reduction and elimination of health inequities among racial/ ethnic minorities and the medically underserved. CEH has been working with a local organization, Heart of East Tampa Front Porch, in providing cancer education and screening to underserved East Tampa populations that are predominantly African-American. Information regarding prostate cancer awareness for men has been identified as an area of need. New guidelines at the time of this research from the US Preventive Services Task Force emphasized the importance
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of informed decision-making regarding screening services [24], but most educational materials did not include this important concept. The East Tampa community was consulted to determine what community members felt they needed in terms of prostate cancer information. The local community sentiment was that culturally appropriate and low-literacy educational tools were needed for prostate cancer awareness and screening options. As traditional pamphlets, brochures, and flip charts have had limited success in non-English speaking or culturally diverse populations with low literacy [12], photonovels were identified as cost-effective and culturally appropriate educational tools. A photonovel is designed similarly to a comic book and is a low literacy and image-intensive narrative that helps readers become more aware of and knowledgeable about a topic [20]. Historically common in Latin America [3], photonovels are gaining momentum in health education because the photographs are identifiable to users, the story is interesting and emotional, and the limited script allows for an extended user population [19, 22]. The most successful photonovels are inspired by a community’s needs and include the community taking an active part in its creation [10, 13, 18]. CEH graduate students in anthropology, public health, and fine arts were awarded a University of South Florida Graduate Student Challenge Grant to work with the East Tampa community to design the photonovel. The photonovel began as entertainment stories in the midtwentieth century in Europe, Latin America, and the southern USA and gradually moved into the educational and political realm in the 1970s [3]. Health educators speak to this history and define photonovels as stories using pictures or comics to explain, examine, or teach a health issue. Included as part of the trend of entertainment-education [1, 23], photonovels have been used by various populations and for multiple health education topics. Recent applications of the photonovel in health education have included populations and topics such as caretakers of children to prevent lead poisoning [1], youth in South Africa and STI prevention [10], and Latina immigrants and folic acid awareness [19]. Despite the many examples of photonovels, the academic literature regarding their effectiveness remains limited. Part of this may be that since the 1990s, the term has been confused with what is now differentiated as photo voice, a method where participants themselves take the photos and add narrative [25]. Coinciding with the rise in popularity of photo voice, the recent academic literature has overlooked the traditional use of photonovels in health education. This project hopes to bring photonovels back into discussions in the literature and to emphasize their potential usefulness in populations that still look to
print media for most of their entertainment and information. Underlying theoretical principles that guided the development of the photonovel include Paulo Freire’s critical pedagogy and community-based participatory research (CBPR) [7]. Freire’s focus is in educational dimensions of community empowerment that include action research applications, emphasizing that if communities are included in the creation of education, they will feel ownership over the knowledge [7]. CBPR fosters an environment for the production of mutually beneficial goals between community members and researchers [16]. Thus, community members were included in all parts of our planning, design, formation, and dissemination process, to foster their sense of empowerment, and to ensure a useful product. The primary research questions of this study were: Are photonovels an adequate and effective educational tool in prostate cancer education? If so, how will the community respond to them? Coming from an ethnographic premise, CBPR, and participatory action research [8], we formulated an exploratory and explanatory model to address the effectiveness of photonovels in the community. The efforts of this project have the potential to yield an innovative model of community engagement and outreach that can be readily exported and transferred for broad application to other settings and populations for reducing cancer health disparities.
Methods Overview This study involved three phases: (1) community health knowledge and needs assessment, (2) product development, and (3) photonovel testing, revising, and dissemination, which are described with the methods used in each phase in Table 1. Overall, four focus groups were conducted to accomplish these phases. Methods included qualitative responses from the focus groups and learner verification methods, which were used to assess the photonovel for literacy components including comprehension, knowledge change, esthetics, and likeability. This study was approved by the Institutional Review Board of the Table 1 Photonovel phases and methods of assessment Phase 1: community health knowledge and needs assessment
Phase 2: product development and pilot testing
Phase 3: photonovel testing, final revision, and dissemination
Literature review Learner verification questionnaires Focus groups 1 and 2
Script development Layout of photonovel
Focus group 4 Learner verification questionnaires
Focus group 3 (pilot testing)
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University of South Florida. Our Community Partners advised us and worked with us at all phases.
Recruitment The recruiters for our project were two women from our Community Partner organization. The community members recruited for the focus groups were representative of the overall target community, African-American men, and their families in a community with a high risk of prostate cancer. The Community Partners located participants and scheduled the focus groups through word-of-mouth at community events and churches and an advertisement in the local community newspaper. In order to accommodate poor participation rates in this area, the eligibility criteria were prioritized from highest to lowest in the following categories: African-American men over 40 years of age, African-American men over 18 years of age, and African-American women over 40 years of age.
Phase I: Community Health Knowledge and Needs Assessment The purpose of this phase was to determine community knowledge regarding prostate cancer, the positives and negatives of pre-existing educational brochures, and how messages could be improved. The community needs assessment included: (1) a literature review of existing print materials about prostate cancer (i.e., brochures, etc.) developed by national cancer agencies, (2) learner verification questionnaires at the start of focus groups to garner quantitative data on the opinions of the preexisting education tools, and (3) two focus group discussions to assess the benefits and shortcomings of the current literature and resources available. The focus groups were composed of African-American men over the age of 18. The existing prostate cancer brochures came from the Centers for Disease Control and Prevention (brochure no. 1), National Institutes of Health (brochure no. 2), and American Cancer Society (brochure no. 3). Phase II: Product Development and Pilot Testing
Focus Group Procedures All of the focus groups (1–4) were conducted at the offices of our Community Partner. The moderator used a focus group guide to assist the discussion. Written informed consent was obtained from all participants. Each focus group began with the participants looking through educational brochures. In focus groups 1, 2, and 4, the participants also filled out a learner verification questionnaire. This questionnaire assessed health literacy materials for a variety of criteria such as “effectiveness.” The discussion portion followed. The moderator used blank sheets of paper to write down ideas and themes that participants found particularly important and a second researcher took notes. At the completion of each focus group, participants were provided an opportunity to ask the research staff questions if they had any. Grounded theory and basic frequency distributions of the learner verification questionnaire were used to analyze the data.
Fig. 1 The photonovel was developed using the US Preventive Services Task Force guidelines for informed decisionmaking, important community themes discussed in the phase I focus groups, and advice and recommendations relating directly to layout and literacy from the pre-existing brochures
The photonovel was developed using the US Preventive Services Task Force guidelines for informed decision-making [24], important community themes discussed in the phase I focus groups, and advice and recommendations relating directly to layout and literacy from the pre-existing brochures (see Fig. 1). An emphasis was placed on the informed decision-making concept because of the new screening guidelines. After a script was written, our Community Partner provided edits until the storyline was agreed upon. The Community Partner took a lead in finding volunteers to participate in the photo shoot. During the photo shoot, community participants and partners were there to give advice on location, props, shots, and the script. An additional focus group was convened to assess the photonovel draft, first using learner verification methods and then holding a group discussion to obtain qualitative comments. The learner verification responses and the likes and dislikes of the group were used to edit the photonovel.
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Phase III: Photonovel Testing, Final Revision, and Dissemination As in phase I, the focus group participants first reviewed brochures using the learner verification questionnaire; however, this phase included the photonovel in addition to the original three brochures. A focus group discussion was then conducted on the positives and negatives of each educational resource. A final edit was made to the photonovel after this focus group. The finished photonovel was printed and given to community leaders and lay health advisors (LHAs) to aid in educating the community. Additionally, a downloadable version was placed on the CEH website to be accessible to other communities free of charge.
Results The results from the community needs assessment and the four focus groups are presented below. A total of 20 (n = 20) African-American participants from East Tampa participated in the focus groups and accompanying questionnaires. No individual participated in more than one group. Sixteen of these participants were males (n = 16) and four were females (n = 4). The females participated after the photonovel was designed in focus groups 3 and 4. Of the respondents, 83 % were 45–64 years old and married and 50 % had a high school education or higher. The analysis phase of this study consisted of two parts: (1) quantitative analysis of the learner verification questions answered by the participants (focus groups 1, 2, and 4) and (2) analysis of the qualitative discussion (focus groups 1–4). Phase I: Literature Review and Focus Groups 1 and 2 In the literature that has been published, photonovels have been shown effective at increasing knowledge, changing attitudes, and increasing intention to perform behaviors [10], increasing self-efficacy [1], being more readable, increasing factual recall, having general credibility, and improving attitudes toward future involvement in health and safety issues as compared to a NCI pamphlet [20] and creating positive behavior [13] changes [13]. However, photonovels have been shown to be limited as they do not necessarily teach the skills needed for behavior change [10] nor do they remove the actual barriers that exist [11]. Despite these limitations, photonovels have been shown effective as a form of entertainment-health education. The literature indicates this is because they are designed for low-literacy audiences [14, 18, 22], use modeling, which portrays characters that look like the reader and shows that someone like the reader can do the intended intervention [1, 20], use stories that increase emotional arousal [1], are something people will “pay attention to” [19], and
usually have community involvement which increases empowerment and participatory methods [18, 20–22]. Focus groups 1 and 2 consisted a total of eight AfricanAmerican males over the age of 18. Each of the three resource materials (brochures 1, 2, and 3) was assessed for appeal, effectiveness, and likeability. Overall, participants stated that for appeal, they were drawn to “directness,” “straightforwardness,” “simple,” and “nonintimidating” text and layout. They were responsive to multiple ethnicities and photos. Additionally, bolded words with a glossary and local resources listed on the brochures were considered positive attributes. Participants also liked brochures that had clearly defined sections and flowed well. Negative responses to the appeal of the brochures included lack of graphics, high-reading levels, and density (quantity) of material. Brochure 1 was considered effective at prompting readers to take action in their health, but less than half of the participants truly understood what cancer screening was being depicted and if it could actually help them answer questions. Brochure 2 scored similarly to brochure 1, except that a majority of respondents felt that this material would help someone with cancer answer their questions. Brochure 3 scored the highest in all of our effectiveness categories, with over 71 % of respondents understanding the cancer screening being depicted, believing that the material could help someone with cancer, feeling the brochure was relevant, and indicating effectiveness at prompting action. Brochures scored well in the “likeability” category for ease of understanding and directness. While brochure 3 scored highest in the effectiveness category, it was important to note that participants were less enthusiastic that it would be useful for the community even though they felt it would receive a positive reaction. This material was very lengthy, and thus, while the information was thorough, it may have been intimidating for participants or irrelevant for someone making the decision to screen or not for prostate cancer. Qualitative analysis revealed various themes concerning health brochures and health care. The themes that emerged from the discussion can be summarized in one quote, “If you want to hide knowledge, put it in a book.” This refers both to the lack of health education materials available and the need for literacy and individual learning skills to access this knowledge, two themes which emerged throughout discussion. First, access to health materials appeared poor. Every participant in the focus groups had never seen the health brochures concerning men’s health and prostate cancer. As such, they were curious as to where these materials could be found and, more importantly, how these brochures could be made readily available. Additionally, two of the men engaged in behavioral cues that may indicate low literacy. They took longer to read through the materials, used their fingers to trace words, became noticeably uncomfortable during the learner verification assessment, commented that they did not know reading was
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going to be a part of the group, and could not complete the questionnaires [4]. In addition to the theme of access to health materials, the theme of needing to understand the content emerged as well. The health materials we provided for the focus groups were regarded as “good,” but men commented that the language was hard to understand and the long length. Therefore, while men remarked that the content was new to them and they were interested in learning about the topic, they still needed the skills necessary to read and comprehend the information. Overall, the men were interested in reading the brochures as the knowledge contained within them was new, and they had never seen the brochures before. However, literacy was a major issue, and the brochures took quite a lot of time for some men to read. The men indicated that these brochures would be helpful for a man who really needed to know about prostate cancer, but that they would probably not be picked up at the doctor’s office to browse through while waiting. When asked what would make a man pick up a brochure to skim through, they commented that it would need to be eyecatching, have more pictures, and be less intimidating. Phase II: Focus Group 3 Based on the comments, we created our photonovel to include eye-catching layouts, familiar pictures, and a glossary. Focus group 3 assessed the photonovel alone using qualitative data and health literacy materials. There were six participants, of which two were women. Overall, the photonovel was well received. The participants enjoyed the story and the pictures, as well as the fact that they felt they could relate to the characters. Major criticisms included font size, spelling errors, speech bubbles that were too long, and a lack of a resource listing. Using the comments from focus group 3, the photonovel was revised (see Fig. 2). The edits included fixing spelling errors, increasing font size when possible, and creating more speech bubbles. We also added resources that people could utilize for more information. Phase III: Focus Group 4 During focus group 4, participants assessed the photonovel as one of a set of health education materials. There were three men and two women present at this focus group. The health education brochures were the same as in focus groups 1 and 2, with the addition of the photonovel. Materials were again assessed on appeal, effectiveness, and likeability using the learner verification questionnaire. When compared to the other materials, the photonovel was considered more “new and different” than other ways of explaining health promotion. Overall, the appeal was good, but people were concerned about the cover, which was lacking
Fig. 2 The edits included fixing spelling errors, increasing font size when possible, and creating more speech bubbles. We also added resources that people could utilize for more information
an eye-catching photo and considered dull; unfortunately, it could not be edited before dissemination. The photonovel was also considered effective; however, it was limited compared to the other materials in that it concentrated on the decision-making process to get screened and not on all aspects of prostate cancer. While this was a limitation, it was also the only material that was recent enough to follow the new recommended guidelines of informed decision-making instead of screening [24]. The photonovel scored above the median of the scale for having a strong message, having visuals one could relate to, providing a good resource for one’s community, and prompting one to take action. Overall, the participants positively scored the likability of the photonovel. They liked that it told a story, was simple, and that having a story made them more likely to actually read the entire brochure, as they wanted to find out what happened to the characters. The participants said it made them curious to begin thinking about prostate cancer as a reality for them. As the photonovel deals only with the decision to get screened or not to get screened, participants said it provided
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readers with a good starting point to have a discussion with their doctor, family, or friends about what is best for them. They also felt that it clearly identified the issues of being screened and would be a good tool to use while discussing options with others. Additionally, they favored the pictures and felt they could relate to the men. However, the focus group participants also enjoyed the CDC prostate cancer booklet for the depth of information available. Participants felt that this would be the appropriate material to have available to the community for those already facing prostate cancer and perhaps a good supplement to the photonovel for those seeking more expansive information. The largest complaint about the photonovel was the cover, which participants said did not represent how “vibrant” the inside was. It was recommended to make the title more like a comic book title and to add better pictures. Respondents particularly thought that a photo of the main character looking deep in thought would provoke someone to pick up the material and read through the information. In sum, the participants really enjoyed the photonovel and said that it was totally different from anything they had seen before.
Discussion Recognizing the diversity of the photonovel, this project utilized this health education option and designed one to aid African-American males and their families making an informed decision about prostate cancer screening. New guidelines from the US Preventive Services Task Force recommend that men are fully informed of the risks and benefits of screening for prostate cancer before going through the process [24]. We followed methods similar to others in the literature [6, 19], including using qualitative approaches for material development and pretesting of the product. The need to develop this educational tool was driven by a community organization that is partnered with the Center for Equal Health, which requested for more culturally competent and lowliteracy educational materials to aid in their outreach. Because very specific information has to be included to explain the informed consent process, the researchers wrote most of the script. However, community members were involved throughout the process, giving feedback on pre-existing materials, being in the photographs, and making comments and recommendations about the storyline. The use of community members throughout the production of the photonovel ensured cultural relevance. The final product was well liked and informative. Limitations to the study exist. The surveying of the preexisting print materials at the start of our focus groups lasted longer than expected and took away from the discussion. Many participants thoroughly read the materials as opposed to skimming them, and a few had literacy issues. Additionally,
our final topic of the photonovel, informed decision-making about prostate cancer screening, was only a small portion of most of the other comparable educational materials. Therefore, while we obtained a great idea of the appeal, effectiveness, and likeability of the photonovel, people commented that it lacked information in comparison to other brochures that dealt not only with decision-making but also treatment information. However, the photonovel was the only brochure to follow the most updated guidelines of an emphasis on informed decision-making. Finally, this was a convenience sample and relied primarily on qualitative data. While the target community was represented, there may have been missed opinions from community members less involved with the community organizations that aided in recruitment. In addition, it was difficult to fill the spots even with the baking of our community partners. There were important findings for future studies and health education opportunities. First, recognizing that low literacy does exist in the population validates the need for more materials targeting this group. Secondly, because some brochures tested very positively possibly because they contained more information about prostate cancer, these have been recommended to our community organizations and LHAs to share with families that are looking for more in-depth information after an abnormal screening result or a cancer diagnosis. We hope that the photonovel can be used to promote informed decision-making regarding prostate cancer screening, and that these brochures can be provided if more information is necessary. Recognizing that our population includes low-literacy members and those who traditionally do not utilize healthcare services as often as other populations, the importance of providing entertainment-education options tailored for them becomes even more critical. Additionally, some adaptations on the photonovel could prove promising in the future. These include using telenovelas, where the story is an actual video [1] and online photonovels which include sound and voiceovers that speak the text [5]. More research into the cost-effectiveness of these new approaches and the accessibility of different populations to the Internet will help future researchers continue to reach this marginalized community. Success with the population could also inform research into the use of photonovels for other underserved populations.
Conclusion A photonovel is an effective health education material that combines low literacy and cultural competency in an entertaining format to educate about an issue. The photonovel described in this paper focuses on the issue of informed decision-making regarding screening for prostate cancer, currently an ethical concern for public health practitioners and
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medical providers. It targets low-income, African-American men who are both at high risk for prostate cancer and often struggle to access health-care services. It is written for lowliteracy adults and emphasizes family and provider importance in making decisions. By using community members in the actual photonovel, modeling is achieved and readers are encouraged to have similar discussions with their own families and health-care providers. This photonovel is intended to complement existing prostate cancer education materials, as there are no other widely available materials concerning the informed decision-making process. As such, the Center for Equal Health, community organizations, and other health outreach centers are excited about the creation of this photonovel. An electronic copy of the photonovel has been given to the Community Partner that aided the researchers with the focus groups. They will be able to reprint and disseminate the photonovel to community members through health fairs, churches, and other health education forums. The copy is also available on the website www. centerforequalhealth.org so that other communities may utilize this resource. We recommend that communities verify that this is well received in their community before disseminating widely, as different communities may respond differently to the dialogue and photographs used in our product. By integrating the current literature on health promotion materials, community stakeholders, and community participants, we created an effective health promotion material that was community-driven. The photonovel not only filled a large gap in the prostate cancer health promotion materials (informed decision-making) but it did so in a low literacy and culturally competent form that highlighted the African-American community and the importance of family and provider discussion before making decisions. Acknowledgments The authors would like to thank The Graduate School of the University of South Florida who funded this project and Dr. Karen Liller, Ph.D., Dean of the Graduate School, and Miranda Holloway, B.S. and Christopher James Otten, M.F.A. who contributed to the project design and implementation. Conflict of Interest The authors declare that they have no conflict of interest.
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