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Service Delivery Innovation Profile

Educational Programs Bridge Communication Gaps Between Providers and Deaf Community, Leading to Enhanced Knowledge About Cancer Among Deaf and Hard-of-Hearing Patients


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Snapshot

Summary

The University of California at San Diego Moores Cancer Center developed several initiatives to improve access to culturally competent care for people who are deaf or hard of hearing, including patient educational videos addressing cancer education, a fellowship program to train at least 25 medical students in deaf culture and use of American Sign Language (typically referred to as ASL) in the medical setting, and activities to encourage undergraduates interested in health careers to learn ASL. The program's educational materials significantly increased cancer knowledge among people who are deaf or hard of hearing and may have led to some positive changes in health-seeking behaviors. The fellowship program increased the cultural competency of participating students in serving the deaf community.

Evidence Rating (What is this?)

Strong: The evidence consists of a randomized control results comparing knowledge gained and retained from those watching an educational video to a control group viewing standard PowerPoint education program.
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Developing Organizations

UCSD Moores Cancer Center
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Date First Implemented

1997
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Patient Population

Vulnerable Populations > Disabled (physically)end pp

Problem Addressed

Millions of Americans suffer from hearing loss, yet the deaf or hard of hearing have not been adequately served by mainstream public health interventions.1 Research shows an especially high need among the deaf and hard-of-hearing community for easily accessible information on cancer.2
  • High prevalence of hearing loss: Approximately 35 million Americans have hearing losses that range from moderate to profound; a subset of between 550,000 and 1 million people in the United States and Canada identify themselves as members of the deaf community.1
  • Poorer health and health knowledge: Compared with the general population, the deaf community uses fewer health resources and has lower health status and more limited health knowledge; for example, one survey found knowledge related to Pap smears and mammography to be lower among deaf than nondeaf females.3
  • Communication barriers: The deaf community faces significant barriers to accessing health care and health information, particularly with respect to cancer. Although ASL is the fourth most commonly used language in the United States, the vast majority of health care professionals cannot communicate with ASL and lack cultural competency in communicating with deaf patients.1 In addition, few communicate using ASL interpreters; instead, most providers use lip-reading or written communication. However, only 30 percent of the English vocabulary can be lip-read, and the average person who is deaf or hard of hearing reads at a fourth grade level (because many learn English as a second language), thus making it difficult to understand written communications.4

What They Did

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Description of the Innovative Activity

The University of California at San Diego (UCSD) developed several initiatives to improve access to care for members of the deaf community, including patient educational videos and Webinars in ASL addressing cancer education, a fellowship program for medical students related to deaf culture and use of ASL in the medical setting, and activities to encourage undergraduates interested in health careers to learn ASL. Key elements of the program include the following:
  • Patient education materials: Educational materials for the deaf community include videos and Webinars related to cancer and cancer care.
    • Videos: Comprehensive cancer education videos cover a variety of topics in ASL, including breast, cervical, uterine, ovarian, prostate, testicular, and colorectal cancers. (Additional videos on skin cancer and smoking cessation are currently being scientifically evaluated.) The videos use native signers as hosts and make liberal use of voiceovers, open-captioning, and graphics so that English-language loved ones can also access the information. Videos focus on describing risk factors, screening, symptoms, diagnosis, and treatment options. The videos have won 16 bronze, silver, gold, and platinum awards at international, professionally juried video competitions.
    • Webinars: Webinars currently being developed will feature oncology experts discussing cancer topics in a conversational style, with interpreters shown on a split screen.
  • Fellowship program: Beginning in fall 2003, UCSD medical students could apply for an intensive 2-year ASL fellowship that provides training on how to conduct routine patient care interchanges in sign language, use interpreters properly when needed, and provide culturally appropriate care to the deaf community. The 5-year program has funding to cover five to six fellows each year. The fellowship begins with a self-paced deaf culture training program during the summer before medical school begins. Once on campus, the students take two ASL classes per week with frequent interactions with deaf patient simulators. They also engage in volunteer health promotion activities within the deaf community for both academic years. During the summer between the first and second years, the students participate in an ASL immersion program at Gallaudet University, the only liberal arts college for the deaf. Finally, they complete an independent study project on an issue relevant to the deaf community.
  • Undergraduate prehealth professional club: This club includes undergraduate students interested in advancing their professional health careers through knowledge of deaf culture and ASL. The club offers the opportunity to learn and practice ASL, participate in workshops on topics related to deaf people's experiences and frustrations with the provision of health care services, and volunteer to run health seminars in the deaf community.
  • Interpreter training: An online program currently in development will train interpreters to communicate with the deaf community on cancer and cancer care, including how to overcome the challenges presented by the complicated vocabulary commonly used in oncology care.
  • Collaboration to create assistive listening devices: In collaboration with UCSD's departments of computer science and bioengineering, the cancer center is creating a training program for the departments' undergraduate and graduate students that will promote an awareness of the deaf community. The students will receive training in cultural awareness and competency, and then meet with focus groups drawn from the deaf community to discuss what assistive listening devices they might create to enhance the quality of life of people with hearing loss. After prototypes of the instruments have been developed, the cancer center will return to the community for testing and feedback.

Context of the Innovation

The UCSD Medical Center includes several facilities, including the UCSD Medical Center Hillcrest, Thornton Hospital in La Jolla, the Shiley Eye Center, and the Rebecca and John Moores Cancer Center, a multidisciplinary outpatient center and the only National Cancer Institute–designated comprehensive cancer center in the region. (The two hospitals provide inpatient cancer care when required.)

The impetus for this program lies in the cancer center's mission to reach out to medically underserved communities. The center's associate director for community outreach spearheaded the initiative after seeing the experiences of a deaf relative who faced significant barriers in accessing appropriate health information and culturally competent care. She recognized the similarities between the deaf community's experiences and other groups at risk of health disparities. Working in collaboration with community leaders, the cancer center developed and implemented this program on a step-by-step basis. UCSD worked with many other organizations during this process, including Deaf Community Services of San Diego, Inc., Gallaudet University, the National Association for the Deaf, Registry of Interpreters for the Deaf, and Bovee Productions.

Did It Work?

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Results

The program's educational materials significantly increased cancer knowledge among people who are deaf or hard of hearing and may have led to some positive changes in health-seeking behaviors. The fellowship program increased the cultural competency of participating students in serving the deaf community. Select results are provided below:
  • Greater knowledge about breast cancer screening5: A survey of 123 deaf and hard-of-hearing women found that participants significantly increased their knowledge of breast cancer after reviewing the educational materials. For example, the percentage of women who correctly answered a question about how frequently breast self-examinations should occur (the correct answer is once a month) rose from 39.2 to 74.4 percent. Similarly, large increases in knowledge occurred with respect to when breast cancer screening should begin, including self-examinations (with the percentage answering correctly—age 20—rising from 24 to 64 percent) and annual mammography screening (with the percentage answering correctly—age 40 years—rising from 30.4 to 51.2 percent).
  • Greater knowledge about colorectal cancer6: In a randomized trial of 144 deaf participants, those who watched an educational video gained and retained significantly more knowledge of colorectal cancer than a control group who viewed a standard PowerPoint education program. Knowledge scores increased significantly right after the video viewing, with most of that knowledge retained after 2 months (updated December 2010).
  • Greater knowledge about prostate and testicular cancer7: Several studies show that the educational programs enhanced knowledge about prostate and testicular cancer:
    • Educational video: An evaluation of a 52-minute educational video with 102 deaf men found that overall knowledge increased significantly immediately after seeing the video, with most gains maintained after 2 months. For example, the percentage of men who knew that testicular cancer usually occurs in men between the ages of 15 and 40 years increased significantly (from 47.5 to 93.1 percent), as did the percentage who knew that most men can still have children after treatment for testicular cancer (49.5 to 84.8 percent) and the percentage who knew that "watchful waiting" is an option in some cases of prostate cancer (50 to 85 percent).
    • Educational presentation: An evaluation of an educational presentation (a precursor to the videos) on prostate cancer with 121 deaf men found that overall knowledge about prostate cancer and screening options increased significantly after seeing the presentation, with these gains being maintained after 2 months.1
  • Improved behaviors related to prostate cancer1: The frequency of prostate-specific antigen screening and digital rectal examinations increased in men aged 50 years and older who viewed the educational presentation described above, although this increase was not statistically significant.
  • Greater deaf cultural competency in fellowship students8: According to information provided in December 2010, an anonymous survey on perceptions related to deaf patients, deaf cultural competency, and interpreter use found that fellowship students demonstrated significantly higher overall knowledge than did nonfellowship students and UCSD medical faculty. This finding suggests that training in deaf cultural competency can lead to reduced health disparities for the deaf community.

Evidence Rating (What is this?)

Strong: The evidence consists of a randomized control results comparing knowledge gained and retained from those watching an educational video to a control group viewing standard PowerPoint education program.

How They Did It

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Planning and Development Process

General planning and development steps included the following:
  • Creating strong community–campus partnership: This partnership was built on trust, mutual respect, and a shared determination to reduce the barriers faced by people who are deaf or hard of hearing.
  • Conducting feasibility study, soliciting leadership support: Program leaders conducted a feasibility study and then approached senior administration to explain the program and solicit their support.
  • Obtaining grant funding: The program has received financial support from a variety of sources as it evolved. (See the Funding Sources section below for more details.)
  • Developing and getting feedback on initial in-person sessions: The program began with in-person educational sessions featuring presentations by a deaf native signer in ASL and graphics shown on an overhead projector. Following these sessions, program leaders got feedback through focus groups with attendees.
  • Developing and disseminating educational videos: These videos replaced the in-person sessions described above. Program leaders disseminated the videos via word-of-mouth marketing and through the National Association of the Deaf's Captioned Media Program (a lending library of videos and films with captions), deaf-friendly places of worship around the country, and the Internet.
  • Launching fellowship program: Program leaders developed a curriculum for the ASL fellowship program and hired a qualified individual to teach it.
  • Securing university partnerships: Program leaders found willing collaborators in other UCSD departments who were eager to assist in championing the needs of people who are deaf or hard of hearing.
  • Recruiting students: Program leaders recruited dozens of students to participate in the fellowship program and other aspects of the initiative, including interns at numerous institutions focused on meeting the educational needs of students who are deaf or hard of hearing.

Resources Used and Skills Needed

  • Staffing: Staff includes the director of the cancer center's community outreach program who coordinates and oversees the multifaceted program, a teacher of ASL and Deaf Culture, volunteers to act in the videos, and support for research activities associated with the evaluation of the various program components.
  • Costs: Medical students who participate in the fellowship are paid $8,000 per year. Other major expenses include staff salaries (e.g., the salary for a sign language teacher will range from $40,000 to $60,000 a year, depending on geographic location); video production; and tuition, transportation, and room and board for fellows at Gallaudet University.
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Funding Sources

National Cancer Institute; Rebecca and John Moores UCSD Cancer Center
The program has received financial support from several organizations, including the UCSD Academic Senate; the Komen for the Cure Foundation San Diego Affiliate; the Alliance Healthcare Foundation, the California Endowment, the National Cancer Institute (three grants); UCSD Chancellor's Interdisciplinary Collaboratories program (two grants); and the National Science Foundation.end fs

Adoption Considerations

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Getting Started with This Innovation

  • Work with community to develop services: Meet with community stakeholders to determine the needs of people who are deaf or hard of hearing, and then design program elements to serve those needs.
  • Understand deaf culture: Providers need skills that go beyond ASL to serve this population effectively.

Sustaining This Innovation

  • Maximize number of people served with fixed resources: For example, videos can reach many more individuals than can in-person education sessions, making them more practical and sustainable.
  • Train nucleus of physicians to be program champions: These physicians will advocate for better access to health information and better care for people who are deaf or hard of hearing. They also can serve as role models and provide training to other physicians on how to optimally serve this population.
  • Create permanent interpreter training program: This program can be given to the Registry of Interpreters for the Deaf for ongoing training purposes.
  • Train cohort of students to become future researchers: Interested computer science and bioengineering students can become researchers who will be sensitized to inquiring about the needs of people who are deaf or hard of hearing.

More Information

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Contact the Innovator

Georgia Robins Sadler, BSN, MBA, PhD
Associate Director for Community Outreach and Professor of Surgery
UCSD Moores Cancer Center
UCSD School of Medicine
3855 Health Sciences Dr., #0850
La Jolla, CA 92093-0850
(858) 534-7611
E-mail: gsadler@ucsd.edu

Innovator Disclosures

Dr. Sadler has no financial interests or business/professional affiliations relevant to the work described in this profile; however, information on funders is available in the Funding Sources section.

References/Related Articles

Folkins A, Sadler GR, Ko C, et al. Improving the Deaf community's access to prostate and testicular cancer information: a survey study. BMC Public Health. 2005;5:63. [PubMed]

Kaskowitz SR 3rd, Nakaji MC, Clark KL, et al. Bringing prostate cancer education to deaf men. Cancer Detect Prevent. . 2006;30(5):439-48. [Epub Nov 13 2006] [PubMed]

Lieu CC, Sadler GR, Fullerton JT, et al. Communication strategies for nurses interacting with deaf patients. MedSurg Nurs. 2007;16(4):239-45. [Reprinted in Dermatology Nursing. 19(6):541-551, Dec 2007.] [PubMed]

Nakaji M et al. Transliterating the SF-12 for the deaf community's use: a pilot study. American Deafness and Rehabilitation Journal. 2007;40(2):19-35.

Nakaji MC et al. A reliable ASL assessment tool. Deaf Studies Today!: Simply Complex. 2006 Conference Proceedings. Eldredge, Bryan, Doug Stringham, and Minnie Mae Wilding-Diaz, editors. Utah Valley State College; 2007:237-44.

Samady W, Sadler GR, Nakaji M, et al. Translation of the multidimensional health locus of control scales for users of American sign language. Public Health Nurs. 2008;25(5):480-9. [PubMed]

Matteson J et al. Campus community partnership, assisting and enhancing the deaf community. Assistive Technology Outcomes and Benefits. Fall 2008;5(1):29-44.

Choe S, Lim RS, Clark K, et al. The impact of cervical cancer education for deaf women using a video educational tool employing American sign language, open captioning, and graphics. J Cancer Educ. 2009;24(1):10-5. [PubMed]

Shabaik S, Lahousse SF, Branz P, et al. Colorectal cancer video for the Deaf community: a randomized control trial. J Cancer Educ. 2010;25(4):518-23 [PubMed]

Hoang L, Lahousse SF, Nakaji MC, et al. Assessing Deaf cultural competency of physicians and medical students. J Cancer Educ. 2010 Jul 23. [Epub ahead of print]. [PubMed]

Wang R, Aldridge AA, Malcarne VL, et al. Health locus of control and assimilation of cervical cancer information in deaf women. J Cancer Educ. 2010;25(3):354-9. [PubMed]

Athale N, Aldridge A, Malcarne VL, et al. Validity of the multidimensional health locus of control scales in American sign language. J Health Psychol. 2010;15(7):1064-74. Epub 2010 May 28. [PubMed]

Yao CS, Merz EL, Nakaji M, Harry KM, Malcarne VL, Sadler GR. Cervical Cancer Control: Deaf and Hearing Women’s Response to an Educational Video. J Cancer Educ. 2012 Mar;27(1):62-66. [PubMed]

Harry KM, Malcarne VL, Branz P, Fager M, Garcia BD, Sadler GR. Assessing the Efficacy of a Skin Cancer Education Program Using a Cross-Over Design. J Cancer Educ. 2012 Apr 27:501-506.

Sadler GR, Branz P, Fager M, Seegers S, Shimaski S. Health Promotion Via Deaf-Friendly Ministries. J Cancer Educ. 2012 Dec 27(4):606-611. [PubMed]

Hickey S, Merz E, Malcarne V, Gunsauls D, Huang J, Sadler GR. Breast Cancer Education for the Deaf Community in American Sign Language. Oncol Nurse Forum. 2013 May 40(3):252. [PubMed]

Jensen L, Nakaji M, Harry K, Gallegos N, Malcarne VL, Sadler GR. Ovarian Cancer: Deaf and Hearing Women’s Knowledge Before and After an Educationial Video. Journal of Cancer Education. 2013 Dec;28(4):647-55. [PubMed]

Sacks L, Nakaji M, Harry KM, Oen M, Malcarne VL, Sadler GR. Testicular Cancer Knowledge among Deaf and Hearing Men. J Cancer Education. [PubMed]

Footnotes

1 Kaskowitz SR 3rd, Nakaji MC, Clark KL, et al. Bringing prostate cancer education to deaf men. Cancer Detect Prevent. [Epub Nov 13 2006]. 2006;30(5):439-48. [PubMed]
2 Marsh S, Branz P. Cancer education in ASL: a visual education medium for your community. Deaf Studies Today! 2004;1:237-46.
3 Orsi JM, Margellos-Anast H, Perlman TS, et al. Cancer screening knowledge, attitudes, and behaviors among culturally Deaf adults: implications for informed decision making. Cancer Detect Prev. 2007;31(6):474-9. [PubMed]
4 Sadler GR, Huang JT, Padden CA, et al. Bringing health care information to the deaf community. J Cancer Educ. 2001;16(2)105-8. [PubMed]
5 Sadler GR, Gunsauls DC, Huang J, et al. Bringing breast cancer education to deaf women. J Cancer Educ. 2001;16(4):225-8. [PubMed]
6 Shabaik S, Lahousse SF, Branz P, et al. Colorectal cancer video for the Deaf community: a randomized control trial. J Cancer Educ. 2010;25(4):518-23 [PubMed]
7 Folkins A, Sadler GR, Ko C, et al. Improving the Deaf community's access to prostate and testicular cancer information: a survey study. BMC Public Health. 2005;5:63. [PubMed] Available at: http://www.biomedcentral.com/1471-2458/5/63
8 Hoang L, Lahousse SF, Nakaji MC, et al. Assessing Deaf cultural competency of physicians and medical students. J Cancer Educ. 2010 Jul 23. [Epub ahead of print]. [PubMed]
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Original publication: September 30, 2009.
Original publication indicates the date the profile was first posted to the Innovations Exchange.

Last updated: February 12, 2014.
Last updated indicates the date the most recent changes to the profile were posted to the Innovations Exchange.

Date verified by innovator: January 19, 2014.
Date verified by innovator indicates the most recent date the innovator provided feedback during the annual review process. The innovator is invited to review, update, and verify the profile annually.