J Canc Educ DOI 10.1007/s13187-013-0590-x
Qualitative Evaluation of a Colorectal Cancer Education CD-ROM for Community Health Aides/Practitioners in Alaska Melany Cueva & Mark Dignan & Anne Lanier & Regina Kuhnley
# Springer Science+Business Media New York 2013
Abstract Colorectal cancer (CRC) is an important contributor to the cancer burden among Alaska Native people. CRC is the leading incident cancer and the second leading cause of cancer mortality among Alaska Native people. Completing recommended CRC screening procedures has the potential to reduce both CRC incidence and mortality. “Taking Action Colorectal Health,” a multidimensional audiovisual, interactive CDROM, incorporates adult education learning principles to provide Alaska's Community Health Aides/Practitioners with timely, medically accurate, and culturally relevant CRC placebased education. Providing this resource on CD-ROM empowers learning within communities and places where people live or choose to learn. The dynamic process of developing, implementing, and evaluating this CRC CD-ROM was informed by a sociocultural approach to share health messages. Within this approach, cultural values, beliefs, and behaviors are affirmed as a place of wisdom and resilience and built upon to provide context and meaning for health messaging. Alaska Native values that honor family, relationships, the land, storytelling, and humor were included in CD-ROM content. Between January and May 2012, 20 interviews were conducted with individuals who had used the CD-ROM. Four categorical themes emerged from analysis of interview transcripts: likeability, utilization, helpfulness, and behavior change. As a result of self-paced learning through stories, movies, and interactive games, respondents reported healthy behavior changes they were making for themselves, with their families and in their patient care practices. This CD-ROM is a culturally based practical course that increased knowledge and activities around M. Cueva (*) : A. Lanier : R. Kuhnley Alaska Native Tribal Health Consortium, 4000 Ambassador Dr, Anchorage, AK 99508, USA e-mail: [email protected] M. Dignan University of Kentucky, Lexington, KY, USA
colorectal cancer screening by Community Health Aides/ Practitioners in Alaska. Keywords Community Health Workers . Colorectal cancer . Adult learning . Cancer education . Distance education . CD-ROM . Qualitative evaluation . Alaska Native and American Indian . Health communication Colorectal cancer (CRC) is an important contributor to the cancer burden among Alaska Native people. CRC is the leading incident cancer and the second leading cause of cancer mortality among Alaska Native people, following lung cancer [1]. Alaska Native people have nearly twice the rate of CRC incidence and mortality as the US White population. The ageadjusted CRC incidence rate (2004–2008) for Alaska Native men and women combined was 87.9 per 100,000 compared to the US White men and women combined rate of 45.1 per 100,000 (2004–2008) [1]. The age-adjusted CRC mortality rate (2004–2008) for men and women combined was 30.2 per 100,000 for Alaska Native people and 16.6 per 100,000 for US Whites (2004–2008) [1]. Completing recommended CRC screening procedures to find and remove precancerous polyps and to find and treat early cancers has the potential to reduce both CRC incidence and mortality among Alaska Native people. The Healthy People 2020 goal is to increase recommended colorectal cancer screening rates to 70.5 % [2]. Based on Alaska Behavioral Risk Factor Surveillance System (BRFSS) data from 2008, 51 % of the Alaska Native population age 50 years or older reported ever having a colonoscopy or sigmoidoscopy [3]. The Alaska tribal health facilities 2012 GPRA (Government Performance and Results Act) [4] reported 58.4 % for Alaska Native patients who had received recommended colorectal cancer screening [5]. Alaska has a unique network of approximately 450 Community Health Aides/Practitioners (CHA/Ps) who provide medical care in 178 rural communities, not connected to a
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Background
something (action). Real change requires a fundamental shift at all three levels [10–12]. Throughout CD-ROM development, curriculum content received ongoing input from CHA/Ps, CHA/P leadership, CHA/P Basic Training Instructors, content experts, cancer survivors, and other interested people. Input was provided through email, teleconferences, and in person meetings. Respondents commented on information accuracy, understandability, content breadth and depth, page layout including color and font, navigation, interactivity, and cultural respectfulness as well as feelings associated with information presentation. This dynamic review process allowed for timely adjustments to be made within the CD-ROM throughout development. To broaden CD-ROM applicability beyond Alaska, national CRC experts within Indian Country and Community Health Representatives (CHRs) who provide health education and care on Indian reservations throughout the contiguous USA also provided input into content development. CHR input was received through the CHR colorectal cancer program from the following areas: Albuquerque (Pueblo, Navajo, Ute, Apache), Oklahoma, Tucson, and Portland. The program features many volunteer Community Health Aides/Practitioners and Community Health Representatives.
CD-ROM Development
CD-ROM Content
“Taking Action Colorectal Health,” a multidimensional audiovisual CD-ROM, was developed (2010–11) to provide Alaska's CHA/Ps with timely, medically accurate, and culturally relevant CRC place-based education. The dynamic process of developing, implementing, and evaluating this CRC CD-ROM was informed by a sociocultural approach to share health messages. Within this approach, cultural values, beliefs, and behaviors are affirmed as a place of wisdom and resilience and built upon to provide context and meaning for health messaging [7]. Alaska Native values [8] that honor family, relationships, the land, storytelling, and humor were included in CD-ROM content. CHA/Ps have reported storytelling as a way to support their learning [9]. The CD-ROM incorporates principles of adult learning, including sequencing, reinforcement, relevancy, engagement, and praxis [10]. For example, basic colon anatomy was graphically illustrated by an outline of the colon which filled with color as each part and function was described, which then sequenced into knowledge and understanding of colon screening procedures. Interactive games, puzzles, and stories provided immediate, meaningful, and relevant reinforcement of medical concepts, supporting and affirming assimilation and application of knowledge. CD-ROM content was designed to engage learners in holistic multidimensional audiovisual ways of learning: ideas, feelings, and actions. Learning involves more than cognitive material (ideas and concepts), it involves feeling something about the concepts (emotions) and doing
The CD-ROM included three main sections: Wellness Ways, Screening, and Colorectal Cancer. Additional resource sections include Understanding Words, Community Resources, and a continuing education (CE) quiz to reinforce participant learning. The CD-ROM was approved for 2 h of CE by the Alaska Community Health Aide Program certification board.
road system. These providers are community residents chosen by their tribes to receive unique training to provide preventive, primary, emergency, acute, and chronic health care within their communities. CHA/Ps annually provide approximately 300,000 patient care encounters to rural Alaska Native people and are eligible to provide Medicaid-reimbursed health care services [6]. During the 15 weeks of CHA/P basic medical training, only 2 h are devoted to cancer. Because of the limitations of CHA/P basic medical training and the demands placed upon them to provide care for their community, these community health care providers have requested extensive, additional information about cancer. The purpose of this paper is to present evaluation results of an interactive CD-ROM place-based course to support CRC knowledge and understanding among Community Health Aides/Practitioners in Alaska. Place-based education empowers learning within communities and places where people live or choose to learn. Through CD-ROM technology, learning is situated within the context of the learners' place.
CD-ROM Distribution In January 2012, a CD-ROM was mailed to each of the 178 village clinics in Alaska. Additionally, the CD-ROM was advertised in the CHAP statewide newsletter and the Alaska Native Tribal Health Consortium statewide newspaper. Outreach efforts included national CD-ROM distribution through Native Circle (http://www.nativeamericanprograms. org/index-circle.html) and the CHR colorectal cancer program (http://www.aastec.net/tchp). Distribution is ongoing; to date, approximately 500 CD-ROMs have been distributed upon request through Native Circle, the CHR colorectal cancer program, and the Alaska CHA/P program.
Methods Evaluation of the CD-ROM was focused on understanding the experience of CD-ROM users. Upon successful completion of the CE quiz, the user can print their CE certificate. Evaluation
J Canc Educ
data were limited to people who successfully completed the CE quiz and sent the Alaska Native Tribal Health ConsortiumCommunity Health Aide Program (ANTHC-CHAP) a copy of their CE certificate. Upon receipt of the completed CE certificate, the person was contacted by email or telephone and invited to participate in a telephone interview to learn their ideas about using the CD-ROM as an education method. During the time frame of this project, 21 CE certificates were received. We were able to contact 20 of the 21 people all of whom were interviewed. Telephone interviews were conducted by a mid-level practitioner who is a CHAP Basic Training Instructor with qualitative evaluation experience. The interview script, including content, wording, and question order, was collaboratively developed by the project team with input from CHA/Ps and an external program evaluator. All interviews were audio recorded with permission and transcribed verbatim. Transcriptions were reviewed independently by both the project coordinator and the interviewer and discussed to reach coding consensus. Interviews were conducted until it was agreed among the project team and the external program evaluator that thematic saturation [13] had been achieved.
Results Between January and May 2012, a 30-min interview was conducted with all of the individuals who had successfully completed the CD-ROM CE quiz and submitted a copy to the ANTHC-CHAP training center. Interview respondents (19 females, 1 male) included 17 CHA/Ps, two mid-level providers (licensed professional primary care providers) who were at the clinic when the CD-ROM arrived in the mail, and one CHAP Medical Director, who oversees multiple regional clinics. The majority of the CHA/Ps in Alaska are Alaska Native women. Self-reported ethnicity included Alaska Native (12), Caucasian (5), Hispanic (1), Pacific Islander (1) and African American (1). The age range in years was: 20–29 (3), 30–39 (4), 40–49 (5), 50–59 (4), and 60–65 (1). Three people chose not to provide their age range. Respondents were from different villages and diverse regions of Alaska including the Interior, Southcentral, Western, and Southeast. Analysis of the interview transcripts revealed four thematic categories: likeability, utilization, helpfulness, and behavior change, which represents how CD-ROM participants integrated CRC knowledge into their self-care and patient care practices. Likeability One reported attribute of the CD-ROM was its appeal. The CD-ROM was designed to invite learners to become actively engaged and maintain interest. To assess CD-ROM attributes
that emerged as “likeability,” the interview focused on what attracted respondents to use the CD-ROM, if they would recommend this CRC learning course to others, their impressions of the CD-ROM as a way to learn CRC information, and which sections were their favorite and why. Interview participants reported learning about the CDROM from the clinic mail out as well as colleagues who recommended the CD-ROM as a desirable way to learn about colorectal cancer. All respondents recommended the CDROM for CHA/Ps, other co-workers, patients, and others interested in learning more about colorectal cancer: Most definitely I recommend it. There are good storylines, like getting checked early—and they would see how it's done and how people do this [CRC screening] they don't have to feel like they're the only ones to need the screening and they don't want to because it's embarrassing. So they can be more comfortable, more normal about it. During the interview, participants enthusiastically talked about the interactive ways CRC information was presented which included: pictures, graphs, games, puzzles, stories, and movie clips. Woven throughout the CD-ROM was a traditional Alaska Native story which was designed to connect viewers with cultural traditions of storytelling to acquire knowledge and understanding to move through challenges. CD-ROM users reported that the artwork, color, design, and use of story created an invitational positive feel: A lot of time you get bored going through material and just keep listening and looking at slides and I think the way you made it interactive was really helpful. And you just get into it and keep moving on through—it's understandable, especially with the pictures. Utilization A second attribute of the CD-ROM training program that emerged was an understanding of how CHA/Ps utilized the CD-ROM. Interview questions invited participants to comment on how long they spent using the CD-ROM, if they showed or shared the CD-ROM with other people and if yes, with whom. Additionally, questions asked about using a computer-based learning course and if there were technology challenges that interfered with their learning. Participants reported using the CD-ROM because it looked interesting, they wanted to learn more about colorectal health, and they needed continuing education to maintain their CHA/ P certification as a medical provider. The amount of time respondents reported using the CD-ROM ranged from 20 to 90 min. However, many people reported using the CD-ROM more than once or reported not tracking their time: “It was so much fun; I didn't keep track of time.”
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In addition to using the CD-ROM to learn more about CRC for themselves as patient care providers, learning within the context of a person's place enriched CD-ROM utilization. Nine participants reported that they had shown/shared the CD-ROM with patients, family, and other CHA/Ps and an additional eight respondents identified people that they planned to show/share the CD-ROM with in the future. &
&
I shared it with my family and co-workers. My husband— it's [colon screening] the last thing he wants to think about or go through. All of his friends make fun of it—it's a guy thing. But when my husband saw it he really looked at the polyps and asked, “So when are you supposed to have the screening? My dad had colon cancer when he was 50, so are you supposed to do it at age 50 or earlier?” And he didn't know about alcohol having an effect on how we might be at risk. My friend watched it [CD-ROM] with me and she was very excited. She's borrowing it to show her husband because her husband has to have a colonoscopy this year.
Interview respondents who included CHA/Ps, as well as two mid-level providers, and a CHAP Medical Director, all described the content as being helpful. Respondents described the level of information as being “just right” not only for themselves but as a resource for them to share with patients and family members. Users reported the CD-ROM provided audio and visual health information in clear, easy to understand ways that increased their CRC knowledge and role modeled ways to talk about CRC health information with patients and family. CHA/Ps stated how helpful it was to learn about CRC screening: &
&
All reported the CD-ROM was a good patient education resource: &
&
&
It lets people be able to get the information they need and make decisions on their own healthcare. People could see the prep and how they do the screening…to know how it is done and what to expect. There are enough medical terms so when they [patients] go to the doctor they're going to be able to follow what he's telling them. It's a good way—it shows the colon is this part of your anatomy, here's the picture, here's the word. It lets people be able to get the information they need and make decisions on their own healthcare.
Computer-based CD-ROM technology was reported as being easy to use even for people new to computer learning. Respondents appreciated the inclusion of contact information for additional resources to extend their learning. Other complimentary features to strengthen users' learning experience included the option to print the resource list and the vocabulary words. Helpfulness The third attribute was “helpfulness” in which users described how and in what ways the CD-ROM supported their learning journey. Questions invited participants to comment if the level of information was appropriate to increase their CRC knowledge as patient care providers, if they learned what they hoped to learn, and how they created meaning with the content. A principle of adult education recognizes that adult learners need to see relevance and usefulness of new learning: the skills, knowledge, or attitudes they are working to acquire [10].
It got all the information in there that was necessary. And it didn't get into a lot of really technical things-it was just really what we need to know, what patients need to know, what we need to be reminded of to tell patients when we're talking about the screening. About one half of the people really avoid it [colon screening], even if they have a family history. Now when patients have to go for screening I can explain it better, explain more. Before I could kind of explain [the procedure] but now I can explain it in more depth, explain it better.
Additionally, all respondents reported the helpfulness of being able to learn CRC information when they needed it. The CD-ROM as a place-based learning course provided an opportunity for people to learn within their communities to support community health: I'm really happy about this because as a Health Aide I like to know what I'm sending my patients to and I want to understand and if they come back and say “I had a polyp removed”—to me it would make no sense—I wouldn't know why they took it out or what's going to happen…This really helped me understand what is going on, helped me to understand what our patients might be going through. All respondents expressed ways the CD-ROM supported their learning. Additionally, eight people commented about the helpfulness of learning via the multidimensional audiovisual and nonjudgmental CD-ROM technology compared to other ways of learning: including face-to-face classroom teaching, videoconferencing, and textbooks: &
I really like the CD because it's one-on-one and if you don't catch something you can go back and look at again and think, “Oh, I've got it now, so you learn better when you can do that. When you're in a class if you're not getting something you hesitate to ask questions because other people might think it's a dumb question. Then too, the class has a lot in it and they just need to keep going. So you can't really go back and look at it, think about it and
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& & &
&
sometimes you don't feel like you understand as much you want to. The CD-ROM is hands-on, and you can stop when you need to and then go back and start where you were when you have time to get back to it. I'm not too much of a book person, so I could just pop it into my computer and then it pulls it right up. And just the interaction- seems clearer having the information that way. It's very good. I like it better than face-to-face classes. It gives more information and it's easier to see things and you can go back as much as you want and look at it again. Get the information again. It's better to learn this way. I like this way better, because a lot of time, I think I learn faster on my own than in a group…I like learning at my own speed.
Behavior Change Considering Bloom's taxonomy of higher order learning [14], we hoped to advance beyond an increase in user knowledge to learn how people were integrating CD-ROM content into their selfcare and patient care practices to support community wellness. As a result of CD-ROM learning, participants reported healthy behavior changes they were making for themselves, with their families, and in their patient care practices. Six people identified ways they would take better care of their health and three people gave examples of how they were already incorporating healthy practices into their lifestyle: &
&
The thing that caught me the most was the smoking part, because I'm not much of a smoker, and I'm like I'll just give it up after learning about the smoking part that it can cause polyps in the colon. That raised a flag for me—I didn't know smoking can cause that. Eating properly is a big thing for me and getting exercise. Seven people shared ways they were supporting family health:
& &
I'm really encouraging my family and friends to have screenings. I liked in the CD how they were talking about learning how to eat smaller portions using the smaller plate and we've started doing this. Instead of eating 2 helpings of mashed potatoes and gravy we [husband and I] eat more greens or have more veggies and we went to eating more whole grains. We're trying to get more fiber and switched over to eating brown rice and red rice and wild rice instead of white rice.
Fourteen people talked about changes in providing patient care: &
Since watching the CD, I have reminded people more frequently that they need a screening.
&
We're letting people know they could get their colonoscopies. We're contacting everyone who needs it and scheduling it. There's a big push to get people in.
Discussion A multidimensional audiovisual CD-ROM format allows for a large amount of information to be self-contained within one disc, including audio, music, video, photographs, graphs, and text files. This technology provides a way for people without hi-speed and consistently available internet connections to be able to access multimedia information to support timely, place-based education. The multisensory format gives learners more cues to increase learning and remembering which also appeals to diverse learning styles and preferences [15]. Participating in face-to-face education is not always economically feasible and may not be available when people desire or need the information. The interactive learning format of a CD-ROM shifts the locus of control to the learners who have active control over their learning location, time of day they learn, the speed at which they progress through the various sections, and the amount of time devoted to each content area. It also allows an opportunity to repeatedly visit sections. In a review of the literature conducted by Friedman et al., the use of computer technology was found to be an effective teaching strategy, positively affecting patient knowledge, anxiety, and satisfaction [16]. In a pilot study of an interactive CD-ROM aimed at the prevention of sexually transmitted infections (STIs) in female adolescents, HIV/STI knowledge increased significantly and nearly all adolescents intended to use condoms at next intercourse after viewing the CD-ROM [17]. In another study, computer-based instruction which included web-based training and the use of interactive CD-ROMs was found to be as effective as instructor-led workshops in increasing knowledge and a promising method of delivering injury prevention training to long-term care staff [18]. “Taking Action Colorectal Health,” an interactive CDROM developed with and for CHA/Ps, was reported to be a helpful way to receive timely colorectal cancer (CRC) health information within the context of people's community. This multimedia learning course provided an empowering resource for CHA/Ps to learn about CRC and share information with their patients and family members. As a result of learning through stories, movies, and interactive games at their own pace, respondents reported ways they had internalized health messages to make a difference in their wellness self-care practices and be more active in providing patient and family education to assist with cancer risk reduction behaviors including having recommended CRC screening exams. This CD-ROM is a culturally based practical course that increased
J Canc Educ
knowledge and activities around colorectal cancer screening by Community Health Aides/Practitioners in Alaska.
Limitations Qualitative evaluation of CD-ROM utilization focused on responses from individuals who completed the CD-ROM quiz that may not be representative of CHA/Ps. No data is available for how many CHA/Ps are using the CD-ROM. Acknowledgments Thank you to Chester Mark, Suling Wang, David Horesh, Claudia Christensen, Don Haverkamp, Kevin English, Ann Penvenne, Diana Redwood, and the many people who helped in the development and review of “Taking Action Colorectal Health.” This interactive CD-ROM was developed as part of the Colorectal Cancer Screening Health Communication Project funded by Centers for Disease Control and Prevention, Division of Cancer Prevention and Control to the Alaska Native Tribal Health Consortium (ANTHC). Additional support was provided by an American Cancer Society Mentored Research Scholar Award (“Developing Arts-Based Cancer Education with Alaska Native People”) to ANTHC. This article was reviewed and approved by the ANTHC Health Research Review Committee (HRRC) on behalf of the ANTHC Board of Directors.
References 1. Kelly J, Schade T, Starkey M, Ashokkumar R, Lanier AP (2012) Cancer in Alaska Native People 1969–2008 40-Year report. Anchorage: Alaska Native Tumor Registry Alaska Native Epidemiology Center Division of Community Health Services Alaska Native Tribal Health Consortium 2. Healthy People 2020 (July 30 2013) http://www.healthypeople.gov/ 2020/topicsobjectives2020/objectiveslist.aspx?topicId=5. Accessed 20 Aug 2013
3. Alaska Department of Health and Social Services, Division of Public Health. Health risks in Alaska among adults: Alaska Behavioral Risk Factor Survey 2009 Annual Report. Juneau: Alaska Department of Health and Social Services, Division of Public Health. http://dhss. alaska.gov/dph/Chronic/Documents/brfss/2008/BRFSS08.pdf. Accessed 13 Aug 2013 4. Wolter E, Rogers K, Isham-Amos T, Reilley B (2012) Scoring a perfect 19: insights from the facilities that met all GPRA targets in 2011. IHS Prim Care Provid 37(1):1 5. IHS [Indian Health Service] 2012 National GPRA [Government Performance and Results Act of 1993] Clinical Performance Report CCRS, Version 10.0. Indian Health Service 2010 Area Summary Report. Albuquerque, NM: Indian Health Service 2012 6. Golnick C, Asay E, Provost E, Van Liere D, Bosshart C, RoundsRiley J, Cueva K, Hennessy T (2012) Innovative primary care delivery in rural Alaska: a review of patient encounters seen by community health aides. Int J Circumpolar Health 71:18543 7. Kreuter M, McClure S (2004) The role of culture in health communication. Annu Rev Public Health 25:439–455 8. Mayo W (2002) Natives of Alaska. Alaska Native ways: what the elders have taught us. Graphic Arts Center, Portland, p 13 9. Cueva M, Kuhnley R, Lanier AP, Dignan M (2007) Story: the heartbeat of learning. Convergence 39:81–88 10. Vella J (2002) Learning to listen learning to teach. Jossey-Bass, CA 11. Mezirow J (2000) Learning as transformation. Jossey-Bass, CA 12. Parker Palmer J (1998) The courage to teach. Jossey-Bass, CA 13. Merriam, S. & Associates (2002) Qualitative research in practice. Jossey-Bass, CA 14. Overbaugh R, Schultz C (2013) Old Dominion University http:// ww2.odu.edu/educ/roverbau/Bloom/blooms_taxonomy.htm. Accessed 13 Aug 2013 15. Gardner H (1999) Intelligence reframed. Basic Books, New York 16. Friedman A, Cosby R, Boyko S, Hatton-Bauer J, Turnbull G (2011) Effective teaching strategies and methods of delivery for patient education: a systematic review and practice. J Cancer Educ 26:12–21 17. Kristin E, Ito E, Kalyanaraman S, Ford C, Brown J, Miller W (2008) Let's talk about sex: pilot study of an interactive CD-ROM to prevent HIV/STIs in female adolescents. AIDS Educ Prev 20(1):78–89 18. Walker B, Harrington S (2008) Computer-based instruction and the web for delivering injury prevention training. Educ Gerontol 34:691–708
Qualitative Evaluation of a Colorectal Cancer Education CD-ROM for Community Health Aides/Practitioners in Alaska Melany Cueva & Mark Dignan & Anne Lanier & Regina Kuhnley
# Springer Science+Business Media New York 2013
Abstract Colorectal cancer (CRC) is an important contributor to the cancer burden among Alaska Native people. CRC is the leading incident cancer and the second leading cause of cancer mortality among Alaska Native people. Completing recommended CRC screening procedures has the potential to reduce both CRC incidence and mortality. “Taking Action Colorectal Health,” a multidimensional audiovisual, interactive CDROM, incorporates adult education learning principles to provide Alaska's Community Health Aides/Practitioners with timely, medically accurate, and culturally relevant CRC placebased education. Providing this resource on CD-ROM empowers learning within communities and places where people live or choose to learn. The dynamic process of developing, implementing, and evaluating this CRC CD-ROM was informed by a sociocultural approach to share health messages. Within this approach, cultural values, beliefs, and behaviors are affirmed as a place of wisdom and resilience and built upon to provide context and meaning for health messaging. Alaska Native values that honor family, relationships, the land, storytelling, and humor were included in CD-ROM content. Between January and May 2012, 20 interviews were conducted with individuals who had used the CD-ROM. Four categorical themes emerged from analysis of interview transcripts: likeability, utilization, helpfulness, and behavior change. As a result of self-paced learning through stories, movies, and interactive games, respondents reported healthy behavior changes they were making for themselves, with their families and in their patient care practices. This CD-ROM is a culturally based practical course that increased knowledge and activities around M. Cueva (*) : A. Lanier : R. Kuhnley Alaska Native Tribal Health Consortium, 4000 Ambassador Dr, Anchorage, AK 99508, USA e-mail: [email protected] M. Dignan University of Kentucky, Lexington, KY, USA
colorectal cancer screening by Community Health Aides/ Practitioners in Alaska. Keywords Community Health Workers . Colorectal cancer . Adult learning . Cancer education . Distance education . CD-ROM . Qualitative evaluation . Alaska Native and American Indian . Health communication Colorectal cancer (CRC) is an important contributor to the cancer burden among Alaska Native people. CRC is the leading incident cancer and the second leading cause of cancer mortality among Alaska Native people, following lung cancer [1]. Alaska Native people have nearly twice the rate of CRC incidence and mortality as the US White population. The ageadjusted CRC incidence rate (2004–2008) for Alaska Native men and women combined was 87.9 per 100,000 compared to the US White men and women combined rate of 45.1 per 100,000 (2004–2008) [1]. The age-adjusted CRC mortality rate (2004–2008) for men and women combined was 30.2 per 100,000 for Alaska Native people and 16.6 per 100,000 for US Whites (2004–2008) [1]. Completing recommended CRC screening procedures to find and remove precancerous polyps and to find and treat early cancers has the potential to reduce both CRC incidence and mortality among Alaska Native people. The Healthy People 2020 goal is to increase recommended colorectal cancer screening rates to 70.5 % [2]. Based on Alaska Behavioral Risk Factor Surveillance System (BRFSS) data from 2008, 51 % of the Alaska Native population age 50 years or older reported ever having a colonoscopy or sigmoidoscopy [3]. The Alaska tribal health facilities 2012 GPRA (Government Performance and Results Act) [4] reported 58.4 % for Alaska Native patients who had received recommended colorectal cancer screening [5]. Alaska has a unique network of approximately 450 Community Health Aides/Practitioners (CHA/Ps) who provide medical care in 178 rural communities, not connected to a
J Canc Educ
Background
something (action). Real change requires a fundamental shift at all three levels [10–12]. Throughout CD-ROM development, curriculum content received ongoing input from CHA/Ps, CHA/P leadership, CHA/P Basic Training Instructors, content experts, cancer survivors, and other interested people. Input was provided through email, teleconferences, and in person meetings. Respondents commented on information accuracy, understandability, content breadth and depth, page layout including color and font, navigation, interactivity, and cultural respectfulness as well as feelings associated with information presentation. This dynamic review process allowed for timely adjustments to be made within the CD-ROM throughout development. To broaden CD-ROM applicability beyond Alaska, national CRC experts within Indian Country and Community Health Representatives (CHRs) who provide health education and care on Indian reservations throughout the contiguous USA also provided input into content development. CHR input was received through the CHR colorectal cancer program from the following areas: Albuquerque (Pueblo, Navajo, Ute, Apache), Oklahoma, Tucson, and Portland. The program features many volunteer Community Health Aides/Practitioners and Community Health Representatives.
CD-ROM Development
CD-ROM Content
“Taking Action Colorectal Health,” a multidimensional audiovisual CD-ROM, was developed (2010–11) to provide Alaska's CHA/Ps with timely, medically accurate, and culturally relevant CRC place-based education. The dynamic process of developing, implementing, and evaluating this CRC CD-ROM was informed by a sociocultural approach to share health messages. Within this approach, cultural values, beliefs, and behaviors are affirmed as a place of wisdom and resilience and built upon to provide context and meaning for health messaging [7]. Alaska Native values [8] that honor family, relationships, the land, storytelling, and humor were included in CD-ROM content. CHA/Ps have reported storytelling as a way to support their learning [9]. The CD-ROM incorporates principles of adult learning, including sequencing, reinforcement, relevancy, engagement, and praxis [10]. For example, basic colon anatomy was graphically illustrated by an outline of the colon which filled with color as each part and function was described, which then sequenced into knowledge and understanding of colon screening procedures. Interactive games, puzzles, and stories provided immediate, meaningful, and relevant reinforcement of medical concepts, supporting and affirming assimilation and application of knowledge. CD-ROM content was designed to engage learners in holistic multidimensional audiovisual ways of learning: ideas, feelings, and actions. Learning involves more than cognitive material (ideas and concepts), it involves feeling something about the concepts (emotions) and doing
The CD-ROM included three main sections: Wellness Ways, Screening, and Colorectal Cancer. Additional resource sections include Understanding Words, Community Resources, and a continuing education (CE) quiz to reinforce participant learning. The CD-ROM was approved for 2 h of CE by the Alaska Community Health Aide Program certification board.
road system. These providers are community residents chosen by their tribes to receive unique training to provide preventive, primary, emergency, acute, and chronic health care within their communities. CHA/Ps annually provide approximately 300,000 patient care encounters to rural Alaska Native people and are eligible to provide Medicaid-reimbursed health care services [6]. During the 15 weeks of CHA/P basic medical training, only 2 h are devoted to cancer. Because of the limitations of CHA/P basic medical training and the demands placed upon them to provide care for their community, these community health care providers have requested extensive, additional information about cancer. The purpose of this paper is to present evaluation results of an interactive CD-ROM place-based course to support CRC knowledge and understanding among Community Health Aides/Practitioners in Alaska. Place-based education empowers learning within communities and places where people live or choose to learn. Through CD-ROM technology, learning is situated within the context of the learners' place.
CD-ROM Distribution In January 2012, a CD-ROM was mailed to each of the 178 village clinics in Alaska. Additionally, the CD-ROM was advertised in the CHAP statewide newsletter and the Alaska Native Tribal Health Consortium statewide newspaper. Outreach efforts included national CD-ROM distribution through Native Circle (http://www.nativeamericanprograms. org/index-circle.html) and the CHR colorectal cancer program (http://www.aastec.net/tchp). Distribution is ongoing; to date, approximately 500 CD-ROMs have been distributed upon request through Native Circle, the CHR colorectal cancer program, and the Alaska CHA/P program.
Methods Evaluation of the CD-ROM was focused on understanding the experience of CD-ROM users. Upon successful completion of the CE quiz, the user can print their CE certificate. Evaluation
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data were limited to people who successfully completed the CE quiz and sent the Alaska Native Tribal Health ConsortiumCommunity Health Aide Program (ANTHC-CHAP) a copy of their CE certificate. Upon receipt of the completed CE certificate, the person was contacted by email or telephone and invited to participate in a telephone interview to learn their ideas about using the CD-ROM as an education method. During the time frame of this project, 21 CE certificates were received. We were able to contact 20 of the 21 people all of whom were interviewed. Telephone interviews were conducted by a mid-level practitioner who is a CHAP Basic Training Instructor with qualitative evaluation experience. The interview script, including content, wording, and question order, was collaboratively developed by the project team with input from CHA/Ps and an external program evaluator. All interviews were audio recorded with permission and transcribed verbatim. Transcriptions were reviewed independently by both the project coordinator and the interviewer and discussed to reach coding consensus. Interviews were conducted until it was agreed among the project team and the external program evaluator that thematic saturation [13] had been achieved.
Results Between January and May 2012, a 30-min interview was conducted with all of the individuals who had successfully completed the CD-ROM CE quiz and submitted a copy to the ANTHC-CHAP training center. Interview respondents (19 females, 1 male) included 17 CHA/Ps, two mid-level providers (licensed professional primary care providers) who were at the clinic when the CD-ROM arrived in the mail, and one CHAP Medical Director, who oversees multiple regional clinics. The majority of the CHA/Ps in Alaska are Alaska Native women. Self-reported ethnicity included Alaska Native (12), Caucasian (5), Hispanic (1), Pacific Islander (1) and African American (1). The age range in years was: 20–29 (3), 30–39 (4), 40–49 (5), 50–59 (4), and 60–65 (1). Three people chose not to provide their age range. Respondents were from different villages and diverse regions of Alaska including the Interior, Southcentral, Western, and Southeast. Analysis of the interview transcripts revealed four thematic categories: likeability, utilization, helpfulness, and behavior change, which represents how CD-ROM participants integrated CRC knowledge into their self-care and patient care practices. Likeability One reported attribute of the CD-ROM was its appeal. The CD-ROM was designed to invite learners to become actively engaged and maintain interest. To assess CD-ROM attributes
that emerged as “likeability,” the interview focused on what attracted respondents to use the CD-ROM, if they would recommend this CRC learning course to others, their impressions of the CD-ROM as a way to learn CRC information, and which sections were their favorite and why. Interview participants reported learning about the CDROM from the clinic mail out as well as colleagues who recommended the CD-ROM as a desirable way to learn about colorectal cancer. All respondents recommended the CDROM for CHA/Ps, other co-workers, patients, and others interested in learning more about colorectal cancer: Most definitely I recommend it. There are good storylines, like getting checked early—and they would see how it's done and how people do this [CRC screening] they don't have to feel like they're the only ones to need the screening and they don't want to because it's embarrassing. So they can be more comfortable, more normal about it. During the interview, participants enthusiastically talked about the interactive ways CRC information was presented which included: pictures, graphs, games, puzzles, stories, and movie clips. Woven throughout the CD-ROM was a traditional Alaska Native story which was designed to connect viewers with cultural traditions of storytelling to acquire knowledge and understanding to move through challenges. CD-ROM users reported that the artwork, color, design, and use of story created an invitational positive feel: A lot of time you get bored going through material and just keep listening and looking at slides and I think the way you made it interactive was really helpful. And you just get into it and keep moving on through—it's understandable, especially with the pictures. Utilization A second attribute of the CD-ROM training program that emerged was an understanding of how CHA/Ps utilized the CD-ROM. Interview questions invited participants to comment on how long they spent using the CD-ROM, if they showed or shared the CD-ROM with other people and if yes, with whom. Additionally, questions asked about using a computer-based learning course and if there were technology challenges that interfered with their learning. Participants reported using the CD-ROM because it looked interesting, they wanted to learn more about colorectal health, and they needed continuing education to maintain their CHA/ P certification as a medical provider. The amount of time respondents reported using the CD-ROM ranged from 20 to 90 min. However, many people reported using the CD-ROM more than once or reported not tracking their time: “It was so much fun; I didn't keep track of time.”
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In addition to using the CD-ROM to learn more about CRC for themselves as patient care providers, learning within the context of a person's place enriched CD-ROM utilization. Nine participants reported that they had shown/shared the CD-ROM with patients, family, and other CHA/Ps and an additional eight respondents identified people that they planned to show/share the CD-ROM with in the future. &
&
I shared it with my family and co-workers. My husband— it's [colon screening] the last thing he wants to think about or go through. All of his friends make fun of it—it's a guy thing. But when my husband saw it he really looked at the polyps and asked, “So when are you supposed to have the screening? My dad had colon cancer when he was 50, so are you supposed to do it at age 50 or earlier?” And he didn't know about alcohol having an effect on how we might be at risk. My friend watched it [CD-ROM] with me and she was very excited. She's borrowing it to show her husband because her husband has to have a colonoscopy this year.
Interview respondents who included CHA/Ps, as well as two mid-level providers, and a CHAP Medical Director, all described the content as being helpful. Respondents described the level of information as being “just right” not only for themselves but as a resource for them to share with patients and family members. Users reported the CD-ROM provided audio and visual health information in clear, easy to understand ways that increased their CRC knowledge and role modeled ways to talk about CRC health information with patients and family. CHA/Ps stated how helpful it was to learn about CRC screening: &
&
All reported the CD-ROM was a good patient education resource: &
&
&
It lets people be able to get the information they need and make decisions on their own healthcare. People could see the prep and how they do the screening…to know how it is done and what to expect. There are enough medical terms so when they [patients] go to the doctor they're going to be able to follow what he's telling them. It's a good way—it shows the colon is this part of your anatomy, here's the picture, here's the word. It lets people be able to get the information they need and make decisions on their own healthcare.
Computer-based CD-ROM technology was reported as being easy to use even for people new to computer learning. Respondents appreciated the inclusion of contact information for additional resources to extend their learning. Other complimentary features to strengthen users' learning experience included the option to print the resource list and the vocabulary words. Helpfulness The third attribute was “helpfulness” in which users described how and in what ways the CD-ROM supported their learning journey. Questions invited participants to comment if the level of information was appropriate to increase their CRC knowledge as patient care providers, if they learned what they hoped to learn, and how they created meaning with the content. A principle of adult education recognizes that adult learners need to see relevance and usefulness of new learning: the skills, knowledge, or attitudes they are working to acquire [10].
It got all the information in there that was necessary. And it didn't get into a lot of really technical things-it was just really what we need to know, what patients need to know, what we need to be reminded of to tell patients when we're talking about the screening. About one half of the people really avoid it [colon screening], even if they have a family history. Now when patients have to go for screening I can explain it better, explain more. Before I could kind of explain [the procedure] but now I can explain it in more depth, explain it better.
Additionally, all respondents reported the helpfulness of being able to learn CRC information when they needed it. The CD-ROM as a place-based learning course provided an opportunity for people to learn within their communities to support community health: I'm really happy about this because as a Health Aide I like to know what I'm sending my patients to and I want to understand and if they come back and say “I had a polyp removed”—to me it would make no sense—I wouldn't know why they took it out or what's going to happen…This really helped me understand what is going on, helped me to understand what our patients might be going through. All respondents expressed ways the CD-ROM supported their learning. Additionally, eight people commented about the helpfulness of learning via the multidimensional audiovisual and nonjudgmental CD-ROM technology compared to other ways of learning: including face-to-face classroom teaching, videoconferencing, and textbooks: &
I really like the CD because it's one-on-one and if you don't catch something you can go back and look at again and think, “Oh, I've got it now, so you learn better when you can do that. When you're in a class if you're not getting something you hesitate to ask questions because other people might think it's a dumb question. Then too, the class has a lot in it and they just need to keep going. So you can't really go back and look at it, think about it and
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& & &
&
sometimes you don't feel like you understand as much you want to. The CD-ROM is hands-on, and you can stop when you need to and then go back and start where you were when you have time to get back to it. I'm not too much of a book person, so I could just pop it into my computer and then it pulls it right up. And just the interaction- seems clearer having the information that way. It's very good. I like it better than face-to-face classes. It gives more information and it's easier to see things and you can go back as much as you want and look at it again. Get the information again. It's better to learn this way. I like this way better, because a lot of time, I think I learn faster on my own than in a group…I like learning at my own speed.
Behavior Change Considering Bloom's taxonomy of higher order learning [14], we hoped to advance beyond an increase in user knowledge to learn how people were integrating CD-ROM content into their selfcare and patient care practices to support community wellness. As a result of CD-ROM learning, participants reported healthy behavior changes they were making for themselves, with their families, and in their patient care practices. Six people identified ways they would take better care of their health and three people gave examples of how they were already incorporating healthy practices into their lifestyle: &
&
The thing that caught me the most was the smoking part, because I'm not much of a smoker, and I'm like I'll just give it up after learning about the smoking part that it can cause polyps in the colon. That raised a flag for me—I didn't know smoking can cause that. Eating properly is a big thing for me and getting exercise. Seven people shared ways they were supporting family health:
& &
I'm really encouraging my family and friends to have screenings. I liked in the CD how they were talking about learning how to eat smaller portions using the smaller plate and we've started doing this. Instead of eating 2 helpings of mashed potatoes and gravy we [husband and I] eat more greens or have more veggies and we went to eating more whole grains. We're trying to get more fiber and switched over to eating brown rice and red rice and wild rice instead of white rice.
Fourteen people talked about changes in providing patient care: &
Since watching the CD, I have reminded people more frequently that they need a screening.
&
We're letting people know they could get their colonoscopies. We're contacting everyone who needs it and scheduling it. There's a big push to get people in.
Discussion A multidimensional audiovisual CD-ROM format allows for a large amount of information to be self-contained within one disc, including audio, music, video, photographs, graphs, and text files. This technology provides a way for people without hi-speed and consistently available internet connections to be able to access multimedia information to support timely, place-based education. The multisensory format gives learners more cues to increase learning and remembering which also appeals to diverse learning styles and preferences [15]. Participating in face-to-face education is not always economically feasible and may not be available when people desire or need the information. The interactive learning format of a CD-ROM shifts the locus of control to the learners who have active control over their learning location, time of day they learn, the speed at which they progress through the various sections, and the amount of time devoted to each content area. It also allows an opportunity to repeatedly visit sections. In a review of the literature conducted by Friedman et al., the use of computer technology was found to be an effective teaching strategy, positively affecting patient knowledge, anxiety, and satisfaction [16]. In a pilot study of an interactive CD-ROM aimed at the prevention of sexually transmitted infections (STIs) in female adolescents, HIV/STI knowledge increased significantly and nearly all adolescents intended to use condoms at next intercourse after viewing the CD-ROM [17]. In another study, computer-based instruction which included web-based training and the use of interactive CD-ROMs was found to be as effective as instructor-led workshops in increasing knowledge and a promising method of delivering injury prevention training to long-term care staff [18]. “Taking Action Colorectal Health,” an interactive CDROM developed with and for CHA/Ps, was reported to be a helpful way to receive timely colorectal cancer (CRC) health information within the context of people's community. This multimedia learning course provided an empowering resource for CHA/Ps to learn about CRC and share information with their patients and family members. As a result of learning through stories, movies, and interactive games at their own pace, respondents reported ways they had internalized health messages to make a difference in their wellness self-care practices and be more active in providing patient and family education to assist with cancer risk reduction behaviors including having recommended CRC screening exams. This CD-ROM is a culturally based practical course that increased
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knowledge and activities around colorectal cancer screening by Community Health Aides/Practitioners in Alaska.
Limitations Qualitative evaluation of CD-ROM utilization focused on responses from individuals who completed the CD-ROM quiz that may not be representative of CHA/Ps. No data is available for how many CHA/Ps are using the CD-ROM. Acknowledgments Thank you to Chester Mark, Suling Wang, David Horesh, Claudia Christensen, Don Haverkamp, Kevin English, Ann Penvenne, Diana Redwood, and the many people who helped in the development and review of “Taking Action Colorectal Health.” This interactive CD-ROM was developed as part of the Colorectal Cancer Screening Health Communication Project funded by Centers for Disease Control and Prevention, Division of Cancer Prevention and Control to the Alaska Native Tribal Health Consortium (ANTHC). Additional support was provided by an American Cancer Society Mentored Research Scholar Award (“Developing Arts-Based Cancer Education with Alaska Native People”) to ANTHC. This article was reviewed and approved by the ANTHC Health Research Review Committee (HRRC) on behalf of the ANTHC Board of Directors.
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