1A-1 – Evaluation of a training program in community-based participatory research (CBPR) to address cancer health disparities

Louis Brown¹, Larkin Strong², Linda Civallero², Patricia Dolan Mullen³, Shine Chang^2
1University of Texas School of Public Health, El Paso, TX, USA ²University of Texas MD Anderson Cancer Center, Houston, TX, USA, ³University of Texas School of Public Health at Houston, Houston, TX, USA

Abstract: Background: Successfully addressing cancer disparities often requires community engaged research and practice supported by both community stakeholders and researchers (1). Researchers may struggle to establish lines of inquiry relevant to the research literature and that directly inform practice. The CBPR paradigm enhances practical utility, increases community capacity, and bolsters the sustainability of efforts to reduce cancer disparities (2). Here, we evaluate an innovative training program designed to help early career cancer prevention researchers engage in CBPR. Description: NCI funded a 5-year Community Networks Program Center at University of Texas MD Anderson Cancer Center and School of Public Health. The Training Core engaged postdocs and assistant professors to build readiness to conduct CBPR: books about CBPR that aid in preparation of grants and manuscripts; CBPR-cancer health disparities seminar series; networking opportunities connecting researchers and community partners; mini-grants program designed to promote researcher-community partner collaboration; in-depth CBPR training opportunities, eg, courses and workshops. Evaluation: Of 18 trainees, 6 participated in a focus group; and 5 others provided written responses. The focus group guide was designed to elicit opinions about the training activities: What worked well and what didn’t; suggestions for improvement; trainee successes and challenges. Two authors independently reviewed the transcripts and identified themes within these categories. General perceptions from respondents were positive, noting numerous successes, e.g., gaining realistic expectations about CBPR and involvement in CBPR projects. Problems included some seminars weren’t connected to CBPR and few CBPR projects for trainee participation. Suggestions included increasing program structure with a large project for trainees to obtain hands-on experience. Usefulness: This is a unique program that prepares post docs/junior faculty to use CBPR to address cancer health disparities. Lessons learned contribute to tangible improvements in our approach as we seek to sustain it. Others interested in creating similar training programs can learn from our experiences. Relation to Theme: Successfully addressing cancer health disparities often requires community engaged research and practice that is supported by both community stakeholders and academic researchers. A need exists for high quality opportunities to train researchers how best to engage in such research and practice and with stakeholders. This presentation describes such an effort. Learning Objectives: At the end of this session, the participant shall be able to describe at least two strategies to build engagement between early career researchers and community members. References: 1. Gwede CK, Ashley AA, McGinnis K, Montiel-Ishino FA, Standifer M, Baldwin J, Williams C, Sneed KB, Wathington D, Dash-Pitts L, Green BL. Designing a community-based lay health advisor training curriculum to address cancer health disparities. Health Promotion Practice 2013;14(3):415-24. 2. DiClemente RJ, Salazar LF, Crosby RA. Community-based participatory research in the context of health promotion. In: Salazar LF, Crosby RA, DiClemente RJ, editors. Research methods in health promotion (2nd ed). San Franscico, CA, US: Jossey-Bass; 2015. p. 313-35.

1A-2 – Evaluating Language Service Needs for Hematopoietic Cell Transplant (HCT) Patients Who Are Limited English Proficient (LEP)

Lensa Idossa^1,2, Heather Moore², Ellen Denzen², Stacy Stickney Ferguson^1,2, Jackie Foster^1,2, Elizabeth Murphy^1,2
1National Bone Marrow Donor Program, Minneapolis, MN, USA, ²Be the Match, Minneapolis, MN, USA

Abstract: Background: Hematopoietic cell transplant (HCT) offers a potential cure for life-threatening blood cancers, such as leukemia and lymphoma. HCT is a resource-intensive treatment, requiring patients to comprehend complex information and navigate a multifaceted healthcare system. Linguistic and cultural barriers create additional challenges for HCT patients who are limited English proficient (LEP). For this population group, providing language services is essential to mitigating access barriers. A needs assessment was conducted in accordance with federal prioritization to improve access to language services for LEP patients. Methods: HCT staff at 139 U.S. hospitals were invited to complete a 27-item survey by email, with 2 follow-ups, resulting in 60% response. Respondents were provided an honoraria for their participation. Analysis was completed using SAS Enterprise Guide 4.3. Results: There is high demand for translated HCT resources for LEP patients, especially on the transplant process (64%). Demand varied by geographic region, patient population (pediatric versus adult), and hospital HCT volume. The most frequent requests were for resources in Spanish, Arabic, and Chinese (40%, 11% and 11%, respectively). Nearly one-third of hospitals allow patients’ family and friends to act as interpreters. There is also broad interest in a clearinghouse for translated HCT information. Discussion: Overall, there is a high demand for translated HCT information for LEP patients. Although the use of family and friends as interpreters is not recommended,2 a substantial number of hospitals reported using this practice. Providing appropriate language services is essential to meeting the language needs of diverse HCT populations. Results from this needs assessment will be used to inform organizational priorities: 1) refine languages currently supported, 2) expand the number, topic and format of translated HCT resources, 3) develop a plan for a clearinghouse of translated HCT resources, and 4) provide training on language access laws and policies for HCT staff. Learning Objectives: At the end of this session, participants will be able to: 1) describe the importance of accessing language services among limited English proficient (LEP) patients; 2) illustrate an evaluation approach for assessing language service needs for LEP patients; and 3) identify recommendations for addressing HCT information gaps for LEP patients. References: 1. Executive Order 13166. A Federal Interagency Website. Accessed April 1, 2015 at: http://www.lep.gov/13166/eo13166.html.

1A-3 – Avoiding Heterodefault: Culturally Competent Health Communication for LGBT Populations

Chasity Walters¹, Dina DiCenso², Sonya Romanoff^1
1Memorial Sloan Kettering Cancer Center, New York, NY, USA, ²SUNY Downstate College of Nursing, New York, NY, USA

Abstract: Between 5.2 and 9.5 million adults in the United States identify as lesbian, gay, bisexual, or transgender (LGBT). Considered a priority population in the health disparities discourse, LGBT people experience health disparities that parallel those of linguistic and ethnic minorities. Interventions to alleviate these disparities include decreasing barriers to access by creating a safe and welcoming environment that encourages open and honest patient-provider communication. Description: This presentation provides an overview of concepts and terms that promote a common understanding of LGBT populations, including the conceptual discrimination of sex and gender, as well as terms to describe sexual orientation. Communication strategies aimed at encouraging LGBT people to express themselves in ways they prefer will be presented, including both verbal and written communications. Examples from existing publications in both the scientific and lay literature will be used to demonstrate common pitfalls, with the goal of relaying best practices for LGBT inclusive writing in the healthcare field. Evaluation: By improving the provision of culturally competent health communication for LGBT populations, educators can contribute to the paucity of research on the effects of improved access, quality of care, and cultural competence on health outcomes and patient satisfaction in LGBT populations. Usefulness: The use of culturally relevant communications allows LGBT populations to be full participants in their healthcare. The concrete strategies presented will allow participants to apply best practices to the degree they are empowered to do so within their own institutions. Relation to Theme: As a result of discrimination and patterns of nondisclosure, lesbian, gay, bisexual, and transgender (LGBT) populations are collectively viewed as a priority population within the health disparities discourse. Culturally competent health educational materials can encourage LGBT patients and caregivers to actively engage in their care as their authentic selves.Learning Objectives: The participant shall be able to identify two strategies to create more inclusive health communication with LGBT populations. References: 1Cahill, S. & Makadon, H. (2013). Sexual orientation and gender identity data collection in clinical settings and in electronic health records: A key to ending LGBT health disparities. LGBT Health, 1, 1-8. 2. Joint Commission (2011). Advancing effective communication, cultural competence, and patient and family centered care for the lesbian, gay, bisexual and transgender community: a field guide.

1A-4 – Traditional to Contemporary: Linking Storytelling and Technology as an Indigenous Approach to Community-based Cancer Education in Alaska Native Communities

Melanie Cueva¹, Katie Cueva^2
1Alaska Native Tribal Health Consortium, Anchorage, AK, USA, ²Institute of Social and Economic Research, University of Alaska, Anchorage, AK, USA

Abstract: Background: Alaska’s village-based Community Health Workers (CHWs) requested cancer information for themselves and their communities. Digital storytelling is an innovative health messaging tool that combines storytelling traditions with computer-based technology to provide a creative and engaging way for CHWs to tell their stories and pass on knowledge to support community wellness. Digital storytelling, grounded in empowerment theory, is portable, accessible and can incorporate web technologies and social media. Methods: HCT staff at 139 U.S. hospitals were invited to complete a 27-item survey by email, with 2 follow-ups, resulting in 60% response. Respondents were provided an honoraria for their participation. Analysis was completed using SAS Enterprise Guide 4.3. Results: There is high demand for translated HCT resources for LEP patients, especially on the transplant process (64%). Demand varied by geographic region, patient population (pediatric versus adult), and hospital HCT volume. The most frequent requests were for resources in Spanish, Arabic, and Chinese (40%, 11% and 11%, respectively). Nearly one-third of hospitals allow patients’ family and friends to act as interpreters. There is also broad interest in a clearinghouse for translated HCT information. Discussion: Overall, there is a high demand for translated HCT information for LEP patients. Although the use of family and friends as interpreters is not recommended,2 a substantial number of hospitals reported using this practice. Providing appropriate language services is essential to meeting the language needs of diverse HCT populations. Results from this needs assessment will be used to inform organizational priorities: 1) refine languages currently supported, 2) expand the number, topic and format of translated HCT resources, 3) develop a plan for a clearinghouse of translated HCT resources, and 4) provide training on language access laws and policies for HCT staff. Relation to Theme: Providing culturally and linguistically appropriate services is essential to optimize cancer treatment outcomes. When patients understand health and treatment-related information, they are better equipped to make informed healthcare decisions. Translation and interpreting services accommodate language needs, reduce healthcare disparities, and improve the quality of patient-centered education. Learning Objectives: The participant shall be able to Identify positive attributes of digital storytelling as a cancer health-messaging tool and list at least three ways digital stories can be used to increase cancer awareness and understandings as a catalyst for cancer conversations and wellness activities. References: 1. Larkey L, Hecht M (2010) A model of narrative as culture-centric health promotion. Journal of Health Communication. 15:114-135.

1A-5 – Development of educational resources to support patients, caregivers and health professionals providing palliative cancer care for First Nation, Inuit, and Métis (FNIM) populations in Ontario

Alathea Kewayosh, Michelle Rand, Usman Aslam
Cancer Care Ontario, Toronto, Canada

Abstract: Background: There is an acute need for culturally sensitive First Nation, Inuit and Métis (FNIM) specific palliative care resources to support the education of the patients, caregivers and health care providers working with these marginalized populations in Canada. Input from FNIM partners and paucity of existing materials identified a pressing need for effective and well-designed materials that will increase the awareness and comprehensiveness of palliative and end-of-life (EOL) cancer care for FNIM and health care providers. Description: Extensive community-based engagement (focus groups and interviews) identified key themes in understanding palliative care systems relevant for FNIM. One of the main findings was the lack of culturally appropriate educational resources specific for FNIM. From this feedback, Cancer Care Ontario (CCO) created a series of six pamphlets on palliative and EOL cancer care, supplemented by a reference binder with detailed information. The intended outcome of these educational materials is to address the gap in palliative and program services available to FNIM. Evaluation: The materials have undergone several evaluation phases, which have been successful in gathering user feedback (level of usefulness, applicability and cultural appropriateness), and have been collected through mixed methods by representatives from FNIM groups and health care providers. Additional measurements of outcomes include number of request, outreach and dissemination; all of which exceeded CCO’s hypothesized uptake. Continued evaluation and sustained support from CCO is critical to ensuring materials are up to date with changes in programming and services. Usefulness: A multi-pronged approach was utilized to ensure useful and effective uptake. The six pamphlets were designed to serve as a plain language educational resource for cancer patients and caregivers, while the reference binder provides additional resources for health care providers serving FNIM communities. These resources have filled a need for FNIM culturally appropriate palliative and EOL care, while initiating open dialogue between FNIM patients, families and health care providers. Relation to Theme: This abstract relates to the conference theme as these innovative educational resources developed by Cancer Care Ontario were specifically designed to meet the lack of culturally appropriate resources for the Indigenous (First Nation, Inuit and Métis) patients and families in Canada going through the cancer journey. Learning Objectives: The participant shall be able to identify the process for understanding and developing materials specific for the Indigenous peoples in Canada (First Nation, Inuit and Métis). The participant shall be able to explain the need for culturally appropriate materials to support the cancer journey, including palliative and end-of-life care, for FNIM people. References: 1. Johnston, G., Vukic, A. and Parker, S. (2013). Cultural understanding in the provision of supportive and palliative care: perspectives in relation to an indigenous population. BMJ Supportive and Palliative Care, 3, 61-68. 2. Durey, A., Thompson, S.C. and Wood, M. (2012). Time to bring down the twin towers in poor Aboriginal hospital care: addressing institutional racism and misunderstandings in communication. Internal Medicine Journal 42(1), 17-22.