- Email: [email protected]
Developing a web-based LGBT cultural competency training for oncologists: The COLORS training
Patient Education and Counseling 102 (2019) 984–989
Contents lists available at ScienceDirect
Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Developing a web-based LGBT cultural competency training for oncologists: The COLORS training Julia Seaya,* , Amanda Hicksb , Merry Jennifer Markhamb , Matthew Schlumbrechta , Meghan Bowmanc, Jennifer Woodardb , Austin Kollefratha , Daniela Diegoa , Gwendolyn P. Quinnd, Matthew B. Schabathc a
Sylvester Comprehensive Cancer Center, 1475 NW 12th Ave, Miami, FL 33136, United States University of Florida Health Cancer Center, 2033 Mowry Rd, Gainesville, FL 32610, United States c H. Lee Moffitt Cancer Center & Research Institute, 12902 USF Magnolia Drive, Tampa, FL 33612, United States d New York University School of Medicine, 550 First Ave, New York, NY 10016, United States b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 9 August 2018 Received in revised form 9 December 2018 Accepted 5 January 2019
Objective: Despite substantial LGBT cancer health disparities, there are no LGBT cultural competency trainings tailored for oncologists. Here we describe the systematic development of a web-based, oncology-focused LGBT cultural competency training. Methods: A literature review regarding LGBT cancer outcomes and competency training was conducted to identify potential training content. An expert panel meeting, including LGBT cancer survivors, cultural competency experts, oncologists, a web designer, and an instructional designer, was held to solidify the training content focus. Following the panel, the training was developed in collaboration with an instructional designer, a web designer, and LGBT community members. Results: The training modules include: 1) LGBT Basics; 2) Inclusive Environments; 3) Initiating Oncology Care with LGBT Patients; and 4) Issues in Cancer Survivorship among LGBT Patients. Module content is interactive, and models effective communication. Conclusion: The process of collaboration with a diverse group of stakeholders and three cancer centers in Florida has resulted in a practical and efficient web-based resource for LGBT cultural competency training for oncologists. Practice implications: Feedback from stakeholders indicates that training in this area is needed and will be well-received by oncologists. We are currently conducting an evaluation of this training among oncologists and LGBT community members. © 2019 Published by Elsevier B.V.
Keywords: LGBT Cultural competency Oncology Training Web-based
1. Introduction Sexual and gender minority (SGM) groups (i.e., LGBTQ) experience substantial health disparities in cancer survivorship and quality of life (QOL) outcomes [1–14]. LGBT cancer survivors report greater distress and more prevalent relationship difficulties than their heterosexual and cisgender counterparts [3,7,9,10]. Moreover, LGBT cancer survivors demonstrate increased likelihood of engaging in alcohol, tobacco, and illicit substance use compared to heterosexual and cisgender survivors [4,7,8]. Given these findings, it is not surprising LGBT cancer survivors report poorer overall health and QOL than heterosexual/cisgender survivors
* Corresponding author at: 1120 NW 14th St. Room 1233, Miami, FL 33136, United States. E-mail address: [email protected] (J. Seay). https://doi.org/10.1016/j.pec.2019.01.006 0738-3991/© 2019 Published by Elsevier B.V.
[2,5,11]. These findings are alarming, considering there are an estimated one million LGBT cancer survivors in the US [15]. While previous studies have elucidated these disparities in cancer survivorship outcomes among LGBT cancer survivors, few have examined why these disparities exist and how best to address them. These few studies have suggested that poorer patientprovider communication and lack of provider competency regarding the unique needs of LGBT patients may contribute to disparities [1–14]. Thus, oncology care providers may benefit from LGBT cultural competency training aimed at improving LGBT patient care and ultimately survivorship outcomes. For example, a previous study reported LGBT cancer patients experienced lower satisfaction with their treatment and care compared to heterosexual patients, indicating LGBT patients may have cancer care needs that remain unaddressed through standard didactic training and conventional practices [6]. LGBT individuals may feel hesitant to disclose their sexual orientation and/or gender identity (SOGI) to
J. Seay et al. / Patient Education and Counseling 102 (2019) 984–989
oncology care providers due to fear of discrimination, and oncology care providers may not feel confident in their ability to discuss SOGI in a competent manner [11, 14]. Lack of disclosure of SOGI may negatively impact patient satisfaction and may limit patients’ abilities to include their partners and other members of their social support system in their cancer care, increasing potential for poorer survivorship outcomes [11, 14]. Moreover, lack of disclosure may prevent LGBT patients and survivors from receiving tailored and personalized care that best meets their unique needs. As cancer disparities in the LGBT community is largely an ignored public health issue, there is a gap in clinical practice guidelines in oncology care across the cancer care continuum and a lack of knowledge of best practice behaviors with this historically marginalized community. As such, there is an emerging need to develop cultural competency training for oncology care providers including communication skill building to address the unique health needs of LGBT patients. Providing such training for oncologists may improve the patient care experience, and thus ultimately impact survivorship outcomes among LGBT patients. To date, there are limited studies that have examined the effects of LGBT cultural competency and skill building trainings, and these types of trainings have been shown to positively influence provider beliefs and attitudes [16–18]. Nonetheless, many medical schools do not yet include LGBT competency training, and those that do average only 5 h of instruction [19–21]. Schabath et al. conducted both a single center survey and national survey of oncologists at National Cancer Institute-Designated Comprehensive Cancer Centers and found substantial proportions of providers do not feel confident in their knowledge of LGBT health needs [22, 23]. Additionally, a majority of the oncologists surveyed endorsed interest in LGBT-related education [22, 23]. Informed by the aforementioned findings regarding LGBT cancer disparities, as well as the need and desire for LGBT competency training among oncologists, we developed an online LGBT cultural competency training, focused on communication skill-building for oncologists, the Curriculum for Oncologists on LGBT populations to Optimize Relevance and Skills (COLORS). The development of the COLORS training was organized and led by academic investigators at three cancer centers in Florida: H. Lee Moffitt Cancer Center & Research Institute (MCC), Sylvester Comprehensive Cancer Center at University of Miami (UM), and University of Florida Health Cancer Center (UF). The COLORS training was developed with substantial input from LGBT-serving community partners, cultural competency experts, LGBT cancer survivors, researchers, and oncologists. Guided by the TIDieR intervention reporting framework [24], this paper describes the process of our collaborative, community-engaged training development, including challenges and lessons learned. We intend to share our curriculum development process with relevant stakeholders to inform future development of competency trainings aiming to address LGBT cancer health disparities. 2. Methods 2.1. Training development 2.1.1. Literature review Prior to beginning the development of the web-based cultural competency training, we reviewed published literature and other online educational resources pertaining to LGBT cultural competency training. The goal of this review was to identify the following: 1) previous recommendations for the development of LGBT cultural competency training; 2) findings regarding the effectiveness of previously developed LGBT cultural competency trainings; and 3) examples of LGBT cultural competency training content, including measures of training effectiveness. We found
985
several organizations, including the AAMC, recommend healthcare providers undergo LGBT cultural competency training [25–27]. We identified few previously-developed LGBT cultural competency trainings for healthcare providers and no LGBT cultural competency trainings tailored specifically for oncologists. Most trainings focused on more general content, such as SOGI terminology, or centered on LGBT health disparities [16, 17, 28–36]. Additionally, most trainings were delivered in-person, and were evaluated by examining the change in attitudes and beliefs of physicians prior to and directly after completing the training, and most showed positive results [16, 17, 29–36]. We also reviewed LGBT cultural competency training materials from several sources, including peer-reviewed literature, online training sites, and LGBT-serving organizations [37–39]. Ultimately, this review informed the development of the COLORS training with the goal of expanding on previous efforts to improve LGBT cultural competency among oncologists. This review also informed the next step in the development process, the expert panel. This research was approved by the Institutional Review Boards at Advarra, Inc. (Columbia, MD), University of Miami, and University of Florida. 2.1.2. Expert panel The aforementioned review revealed that diverse stakeholders, including LGBT community members, academic investigators, and clinicians, were not always consistently consulted in the development of cultural competency training curricula. Since each of these stakeholders may provide pivotal input in the development of cultural competency training for oncologists, a single, day-long expert panel of twelve individuals was convened. The panel included two cancer survivors, three LGBT cultural competency experts, an instructional designer, a web designer, two medical researchers who were not part of our research team, and a clinical oncologist from each of three institutions who were not part of our research team. The LGBT cancer survivors and cultural competency experts were identified via previous community partnerships established by the University of Miami Principal Investigator (JS). The remaining panelists were identified via previous academic relationships with the several members of the investigative team. The goals of the panel were to: (1) identify the key domains for increasing LGBT cultural competency and communication skills of oncologists; (2) identify appropriate content for each of these aims; and (3) identify appropriate delivery methods of training content. The expert panel session began with a review of the goals of the panel, specifically: 1) key LGBT health content areas (modules) for training; 2) the method of delivery of the training; 3) the length of training; 4) whether the training would offer CMEs or other certification opportunities; 5) instructions for each module; and 6) the target audience for the receipt of training. Several draft examples of potential training content and delivery were presented and discussions were conducted to obtain feedback. We initially proposed a 2-hour long training session targeted at medical oncologists, consisting of four potential modules, including both basic and oncology-specific LGBT health content. We developed initial draft learning objectives, content, and delivery methods for each module as a basis for discussion with the stakeholders. For each module, a study investigator presented the materials to the panel and solicited feedback on the objectives, content, and delivery methods. Each module was discussed for approximately one hour. The panel provided general feedback regarding the overall format of the training, and regarding specifics of the training content. The clinician panelists asserted the overall training should be as brief as possible, self-paced, and as oncologists have extremely busy clinical schedules, have the ability to complete the training altogether at once or at different times. The clinician
986
J. Seay et al. / Patient Education and Counseling 102 (2019) 984–989
and LGBT cultural competency expert panelists concurred that the training should be interactive, and involve activities requiring trainees to apply what they learn. The clinician panelists in particular suggested the interactive activities included in the COLORS training should require the user to click on several parts of the webpage to advance. These panelists believed that unless participants were required to click, they may just scan through the whole training at once to quickly arrive at the end. The clinicians noted many web-based trainings do not include interactive options, and panelists doubted that a narrated PowerPoint-style training would be effective based on their previous experiences with this format. The LGBT cultural competency experts and community members also relayed that the interactive design would more effectively improve skills, rather than a traditional PowerPoint design, which may only be effective in improving knowledge. During the panel session, the web designer and instructional designer confirmed this interactive format was feasible to develop, given our budget and shared resources. Regarding the specific training content, all panelists concurred the training modules should not include long lists of facts, but rather a focus on skill-building. Panelists suggested the inclusion of statistics regarding LGBT health disparities would be most helpful when presented at the beginning of the training, rather than interspersed as lists of facts and research findings throughout the training modules. When discussing specific module content, several points of compromise arose between clinicians and LGBT cultural competency experts and community members. For example, when discussing training content regarding inclusive clinic environments, the LGBT cultural competency experts and LGBT community members noted the importance of several areas of focus including: collecting SOGI information on intake forms, posting a non-discrimination policy in the clinic, and creating gender-neutral clinic restrooms. The clinician panelists noted, however, that most clinicians in academic medical centers do not have control over these institutional factors. The clinician panelists asserted that each area of the training should provide advice that is actionable for oncologists. Ultimately, it was decided that our team would develop training content regarding inclusive clinic environments, but tailor this content to provide oncologists with a concrete, actionable skillset (see training content sections below for details regarding the inclusive environments module). In particular, we decided to train oncologists to assess the inclusiveness of their clinic environment focusing on the aspects of the environment stressed as important by the cultural competency experts and offer actionable pieces of advice for compensating in light of finding potentially or actually non-inclusive clinic elements. For the most part, the content areas proposed for each module (described below) were accepted by the panelists, and the discussion centered mostly on delivery of the training content. Given that panelists concurred the training should be interactive, we collectively agreed the training content should include instructional activities requiring participants to “click” to reveal information, and interactive case vignettes requiring participants to make clinical decisions and communication choices with LGBT patients. We collectively decided to include two short videos within the training to provide real-world examples, as well as two application exercises that involve participants filling in personal information regarding themselves as well as their own clinic environment to encourage reflection. The specific training content for each module is described in the sections below. Finally, once we solidified training content and delivery, panelists aided in fine-tuning the approach, highlighting some important factors in training development to consider. First, our LGBT cultural competency experts and community members stressed that training needed to incorporate intersectionality,
the concept that multiple aspects of identity (e.g., age, race/ ethnicity, and sexual orientation) may interact to influence outcomes and are important to consider, in a meaningful way. The panel agreed providers should walk away with a basic understanding that sexual and gender minority groups are not monolithic and be able to understand an intersectional approach to cultural competency. In response to this feedback, as described in the Training Content sections below, we incorporated training around the concept of intersectionality directly in Module 1, as well as via the interactive case vignettes. In a similar vein, the LGBT cultural competency experts and community members noted any case vignettes included as part of the training needed to be as diverse as possible. Stock photos of patients tend to include hetero and cisnormative images, and thus, we would need to work to find more representative photos for case vignettes. As described in the Training Content sections below, our study team strove to incorporate and integrate this valuable feedback from the expert panel throughout the development of the training. 2.1.3. Online curriculum development Based on feedback from the expert panel, we emerged from the panel with the following four modules in development: 1) LGBT Basics; 2) Inclusive Environments; 3) Initiating Oncology Care with LGBT Patients; and 4) Issues in Cancer Survivorship among LGBT Patients. Each of the modules includes a didactic portion and an interactive portion. The didactic portion provides participants with basic training, and the interactive portions require participants to apply what they have learned to interactive case vignettes and scenarios. A particular highlight of the training is that almost all interactive activities are focused on communication, and thereby model effective communication with patients. The development of the online training was both iterative and collaborative, encompassing a multi-month process and engaging not only the academic investigative team, but also two of the LGBT cultural competency experts, the instructional designer, and the web designer from the previous expert panel. Our collaborative team met weekly as well as worked independently to develop the training content. We developed content templates for each module, as well as for each module’s interactive activities, to streamline content development. These content templates were developed online on a shared drive, and the study team was able to comment and edit each module in real time. Each institution (MCC, UM, UF) was responsible for taking the lead on developing content for each of the first three modules, and the institutions collectively lead the development the fourth module. Once the drafts were completed for the training content, the initial drafts were reviewed by the LGBT cultural competency experts and content was edited based on their feedback. Final content was given to the web designer, who then developed the online training platform. Once the website was launched, our investigative team worked iteratively with the web designer to review and refine content. 2.2. Training content 2.2.1. Module 1—“LGBT Basics” Based on the feedback of the expert panel, as well as the cultural competency consultants, Module 1 is entitled “LGBT Basics” and focuses on SOGI terminology, intersectionality, the importance of understanding SOGI within the context of clinical care, and communication skills around discussing SOGI with patients. The collaboratively-determined learning objectives for Module 1 are: 1) Define and use SOGI terms 2) Recognize the importance of understanding and be able to communicate about SOGI with oncology patients 3) Identify inclusive language to use with oncology patients
J. Seay et al. / Patient Education and Counseling 102 (2019) 984–989
Module 1 activities include an interactive terminology activity, intersectionality activity, patient testimonial video, and two case vignettes. The interactive terminology activity requires participants to click on SOGI terms to learn their definitions, and allows participants to zoom in and out of a map of terms, such that they could better understand how these terms relate (or do not relate) to one another. The intersectionality activity provides a brief description of the concept of intersectionality and its effects on health outcomes, and then prompts the trainee to reflect on multiple aspects of their own identity, including aspects that could be associated with power as well as aspects that could be associated with disadvantage. On the advice of the cultural competency experts, the development of an understanding of intersectionality via self-reflection may encourage participants to reflect on how intersectionality may influence health outcomes among the patient populations they serve. The patient testimonial video comprised a series of LGBT patients who were not actors. These patients described their experiences seeking healthcare, and emphasized the importance of communication around SOGI and cultural competency. By including this short video, we aimed to emphasize the real-world, human element to the concepts illustrated by the training module. Finally, the two case vignettes focused on the discussion of SOGI. Each vignette presents participants with an initial problem, and participants must choose between two different approaches to address the problem. Each approach includes a dialogue illustrating how the physician will communicate with the patient in the vignette. Once a participant chooses one of the two approaches, they are led to an outcome, which is either positive or negative based on their choice. They are then given two more approaches to address the outcome and are led to a final outcome for their path through the vignette. Participants whose choices lead to a negative final outcome must re-do the vignette until they make the correct choices. Each vignette highlighted important communication considerations around discussing SOGI, including the use of preferred pronouns, asking open-ended questions, and how to address any patient discomfort regarding the discussion of sexual orientation and sexual behavior. Notably, each module takes approximately 30 min to complete, and the entire COLORS training takes approximately 2 h to complete. 2.2.2. Module 2—“Inclusive Environments” Module 2 is entitled “Inclusive Environments,” and focuses on the elements of the clinic environment and the messages these elements may send to LGBT patients regarding provider awareness and acceptance of LGBT patients and their support network. These elements of the environment include intake forms, non-discrimination policies, clinic decorations and reading materials, the clinic website, and clinic restrooms. In addition to calling attention to elements of the environment, this module demonstrated how oncologists can assess their own clinic environment and demonstrated actionable steps that oncologists can take to promote inclusivity and reflect that inclusivity in the clinic environment. The learning objectives for Module 2 were: 1) Recognize environmental factors in the oncology clinic that may communicate negative messages to LGBT oncology patients. 2) Assess the inclusiveness of your own clinic environment and what it might communicate to patients presenting in the clinic 3) Develop strategies for signaling acceptance of LGBT patients. Module 2 activities include a video regarding inclusive clinic environments, an interactive clinic activity, as well as a clinic evaluation exercise. The video, “Vanessa Goes to the Doctor,” was originally produced by the National LGBT Cancer Network, and is used in the training with permission from their leadership [37].
987
The video chronicles the experiences of a transgender patient entering a clinic, and provides examples of a non-inclusive and an inclusive clinic space. After viewing the video, participants are prompted to complete an interactive clinic activity, where they evaluate the clinic environment from the oncologist’s perspective. This activity allows participants to select how they address various elements of non-inclusivity found in a clinic environment. Finally, participants are prompted to complete, in survey format, an evaluation of their own clinic environment. As part of the evaluation, participants are encouraged to select one or more ways they will address non-inclusive elements of their own clinic revealed in their evaluation. 2.2.3. Module 3—“initiating oncology care with LGBT patients” Module 3 is entitled, “Initiating Oncology Care with LGBT Patients,” and focuses on several important care considerations during the initiation of oncology care: welcoming LGBT patients’ sources of social support, making informed treatment decisions, and considerations in end-of-life discussions. The learning objectives for Module 3 were: 1) Welcome and effectively communicate with LGBT patients’ sources of social support 2) Understand the unique needs of LGBT patients regarding their cancer diagnosis and care plan 3) Understand unique considerations in discussions of end-of-life care and decision-making Module 3 activities include three interactive case vignettes. Each vignette is preceded by a brief introductory narration to orient the participant to the vignette topic and the points to be considered. Each interactive case vignette follows the format of the interactive case vignettes described in Module 1. The first vignette covers communication with LGBT patients’ sources of social support and highlights the fact that LGBT patients are less likely than heterosexual and cisgender patients to have primary sources of social support who are biological family members. The second vignette covers hormone therapy considerations for a transgender patient undergoing cancer treatment, and emphasized that unless explicitly contraindicated, oncologists should consider continuing transgender patients on hormone therapy throughout cancer treatment. Finally, the third vignette explores considerations around end-of-life discussions with LGBT patients and highlight that LGBT patients are more likely to need legal assistance to ensure appropriate parties are designated as power of attorney, as well as to ensure that custody of children goes to the appropriate party, as these parties are less likely to be legal spouses or biological family members of the child. 2.2.4. Module 4—“issues in cancer survivorship among LGBT patients” Module 4 is entitled, “Issues in Cancer Survivorship among LGBT Patients,” and focuses on considerations that may arise in cancer survivorship for LGBT patients, such as discussion of supportive care, body image and sexual side effects of treatment, as well as fertility concerns. The learning objectives for Module 4 are: 1) To demonstrate knowledge of unique considerations for LGBT patients during active treatment and cancer survivorship 2) To recognize unique concerns for LGBT patients in relation to intimacy and quality of life. 3) To discuss in a culturally competent manner concerns about body image and fertility with LGBT survivors Module 4 activities include three interactive case vignettes. Each vignette is preceded by a brief introductory narration to orient the participant to the vignette topic and the points to be
988
J. Seay et al. / Patient Education and Counseling 102 (2019) 984–989
considered. Each interactive case vignette follows the format of the interactive case vignettes described in Module 1. The first vignette covers consideration for the discussion of sexual side effects of treatment, and emphasizes the importance of understanding how these effects may differ for LGBT patients, how to ask open-ended questions, as well as the importance of not making assumptions regarding sexual behavior. The second vignette covers considerations around the discussion of breast reconstruction, and emphasizes the importance of inquiring about patient needs without making assumptions about a patient’s desired body image. The third vignette covers considerations for discussions of fertility and emphasizes the importance of not making assumptions regarding patients’ wishes to have children, and the use of inclusive language and gender-neutral terminology, including ways of referring to sexual reproductive organs, during the discussion. 3. Discussion This paper describes the processes utilized to develop a webbased LGBT cultural competency training in less than 12 months. One of the major lessons learned was the inherent value in working with diverse stakeholders in developing this training. However, integrating these perspectives was challenging at times. For example, some of the issues highlighted by the community partners were deemed not actionable by the oncologists with whom we consulted. Additionally, some of the oncologists asked for the training to be very time-limited, which would have limited our ability to engage with the content deemed essential by community partners. Cumulatively, compromises were made between each stakeholder’s perspectives to achieve the best version of our training. The expert panel achieved these compromises by having all stakeholders in the room together with an open discussion of differences of opinion regarding training content and delivery. We recommend investigators seeking to work with diverse stakeholders provide the opportunity not only to interface with each stakeholder independently, but to allow stakeholders to discuss the issues as a group to ensure that inevitable compromises are amenable to each stakeholder group. Additionally, while we believe the COLORS training will best meet the needs of oncologists and the LGBT patients they serve, we acknowledge that in developing an online, rather than in-person training, we faced unique challenges. Firstly, the development of the online training took nearly twice the time we would expect to develop for an in-person training. Part of this was due to the training content. Feedback from the expert panel indicated the training should be interactive, and thus, content development was far more complicated for both the investigative team and the web designer. A particular issue with the interactive content was the need to consider many dimensions of content delivery which do not have to be considered with in-person training. For example, we had to envision how participants would click through the interactive activities, how much information to include on each page, and how to make the flow cohesive so the training would be understandable and easy to use. These considerations involved several revisions to the web modules, even after we had solidified specific training content. Our web designer incorporated a commenting feature into our pilot website so that the study team could review the web content and comment with questions and suggestions for revision. Furthermore, our training was developed based on prior research, needs, and perspectives of LGBT patients and oncologists in the US. While we believe that some of our content may be transferrable to other countries and cultures outside of the US, we acknowledge that extensive research would be needed to verify
the cultural appropriateness and effectiveness of the training within these countries prior to dissemination of the training outside of US. We are currently in the process of piloting the fully-developed COLORS training among oncologists, as well as eliciting LGBT community feedback regarding the training via qualitative focus groups. For the pilot study, we are enrolling oncologists at each of our institutions, having them complete the training, and examining pre-post changes in LGBT-related knowledge, attitudes, and clinical practices, as well as overall feasibility and acceptability of the training. Results of the pilot study are forthcoming, we aim to use the pilot results to address LGBT cancer survivorship disparities through the further tailoring and expansion of our training. Funding The current project is funded by the Florida Academic Cancer Center Alliance (FACCA). FACCA did not have any role the design, development, or implementation of the current project, nor was FACCA involved in the development and submission of this manuscript. Conflicts Dr. Quinn reports her former institution, Moffitt Cancer Center, received funding from Boeringer Ingelheim of which she was PI, for a study on lung cancer biomarkers, unrelated to this study. Acknowledgements We would like to acknowledge all of our COLORS expert panelists who provided their invaluable expertise: Ines Mevs, Cindy Brown, John Kiluk, Judith Hurley, Jennifer Lopez, Charles Kamen, Rodrigo Carvajal, Jacqueline Castagno, Liz Margolies, and Naomi Cobb. Additionally we would like to thank the National LGBT Cancer Network for providing LGBT competency training expertise and educational materials. We would also like to acknowledge our web designer, Rob Martin, our instructional designer, Allison Haskell, and our research coordinator, Luisa Duarte, for providing their expertise and efforts in our training development. References [1] J.M. Jabson, D.J. Bowen, Perceived stress and sexual orientation among breast cancer survivors, J. Homosex. 61 (6) (2014) 889–898. [2] J.M. Jabson, R.J. Donatelle, D. Bowen, Breast cancer survivorship: the role of perceived discrimination and sexual orientation, J. Cancer Surviv.: Res. Pract. 5 (1) (2011) 92–101. [3] J.M. Jabson, R.J. Donatelle, D.J. Bowen, Relationship between sexual orientation and quality of life in female breast cancer survivors, J. Womens Health (Larchmt.) 20 (12) (2011) 1819–1824. [4] J.M. Jabson, G.W. Farmer, D.J. Bowen, Stress mediates the relationship between sexual orientation and behavioral risk disparities, BMC Public Health 14 (2014) 401. [5] J.M. Jabson, G.W. Farmer, D.J. Bowen, Health behaviors and self-reported health among cancer survivors by sexual orientation, LGBT Health 2 (1) (2015) 41–47. [6] J.M. Jabson, C.S. Kamen, Sexual minority cancer survivors’ satisfaction with care, J. Psychosoc. Oncol. 34 (1-2) (2016) 28–38. [7] C. Kamen, J.R. Blosnich, M. Lytle, M.C. Janelsins, L.J. Peppone, K.M. Mustian, Cigarette smoking disparities among sexual minority cancer survivors, Prev. Med. Rep. 2 (2015) 283–286. [8] C. Kamen, K. Mustian, M.O. Johnson, U. Boehmer, Same-sex couples matter in cancer care, J. Oncol. Pract. 11 (2) (2015) 212–215. [9] C. Kamen, K.M. Mustian, A. Dozier, D.J. Bowen, Y. Li, Disparities in psychological distress impacting lesbian, gay, bisexual and transgender cancer survivors, Psychooncology 24 (11) (2015) 1384–1391. [10] C. Kamen, K.M. Mustian, C. Heckler, M.C. Janelsins, L.J. Peppone, S. Mohile, et al., The association between partner support and psychological distress among prostate cancer survivors in a nationwide study, J. Cancer Surviv.: Res. Pract. 9 (3) (2015) 492–499.
J. Seay et al. / Patient Education and Counseling 102 (2019) 984–989 [11] C. Kamen, O. Palesh, A.A. Gerry, M.A. Andrykowski, C. Heckler, S. Mohile, et al., Disparities in health risk behavior and psychological distress among gay versus heterosexual male cancer survivors, LGBT Health 1 (2) (2014) 86–92. [12] C.S. Kamen, M. Smith-Stoner, C.E. Heckler, M. Flannery, L. Margolies, Social support, self-rated health, and lesbian, gay, bisexual, and transgender identity disclosure to cancer care providers, Oncol. Nurs. Forum 42 (1) (2015) 44–51. [13] G.P. Quinn, J.A. Sanchez, S.K. Sutton, S.T. Vadaparampil, G.T. Nguyen, B.L. Green, et al., Cancer and lesbian, gay, bisexual, transgender/transsexual, and queer/ questioning (LGBTQ) populations, CA Cancer J. Clin. 65 (5) (2015) 384–400. [14] G.P. Quinn, M.B. Schabath, J.A. Sanchez, S.K. Sutton, B.L. Green, The importance of disclosure: lesbian, gay, bisexual, transgender/transsexual, queer/ questioning, and intersex individuals and the cancer continuum, Cancer 121 (8) (2015) 1160–1163. [15] U. Boehmer, X. Miao, A. Ozonoff, Survivorship and sexual orientation, Cancer 117 (2011) 3796–3804. [16] V.L. Leyva, E.M. Breshears, R. Ringstad, Assessing the efficacy of LGBT cultural competency training for aging services providers in California’s central valley, J. Gerontol. Soc. Work 57 (2-4) (2014) 335–348. [17] K.E. Porter, L. Krinsky, Do LGBT aging trainings effectuate positive change in mainstream elder service providers? J. Homosex. 61 (1) (2014) 197–216. [18] J.M. Jabson, J.W. Mitchell, S.B. Doty, Associations between non-discrimination and training policies and physicians’ attitudes and knowledge about sexual and gender minority patients: a comparison of physicians from two hospitals, BMC Public Health 16 (2016) 256. [19] J. Griggs, S. Maingi, V. Blinder, N. Denduluri, A.A. Khorana, L. Norton, et al., American society of clinical oncology position statement: strategies for reducing cancer health disparities among sexual and gender minority populations, J. Clin. Oncol. (2017). [20] J. Moll, P. Krieger, L. Moreno-Walton, B. Lee, E. Slaven, T. James, D. Hill, S. Podolsky, T. Corbin, S.L. Heron, The prevalence of lesbian, gay, bisexual, and transgender health education and training in emergency medicine residency programs: what do we know? Acad. Emerg. Med. 21 (5) (2014) 608–611. [21] A. Ambrose, S. Lin, M. Chun, Cultural competency training requirements in graduate medical education, J. Grad. Med. Educ. 5 (2) (2013) 227–231. [22] G. Shetty, J.A. Sanchez, J.M. Lancaster, L.E. Wilson, G.P. Quinn, M.B. Schabath, Oncology healthcare providers' knowledge, attitudes, and practice behaviors regarding LGBT health, Patient Educ. Couns. 99 (10) (2016) 1676–1684 23. [23] M.B. Schabath, C.A. Blackburn, M.E. Sutter, P.A. Kanetsky, S.T. Vadaparampil, V. N. Simmons, J.A. Sanchez, S.K. Sutton, G.P. Quinn, National survey of oncologists at national cancer institute-designated comprehensive cancer centers: attitudes, knowledge, and practice behaviors about LGBTQ cancer patients, J. Clin. Oncol. (2018) (In press). [24] T. Hoffmann, P. Glasziou, I. Boutron, R. Milne, R. Perera, D. Moher, D. Altman, V. Barbour, H. Macdonald, M. Johnston, S. Lamb, M. Dixon-Woods, P. McCulloch, J. Wyatt, A. Chan, S. Michie, Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide, BMJ 348 (2014) g1687. [25] K.I. Fredriksen-Goldsen, C.P. Hoy-Ellis, J. Goldsen, C.A. Emlet, N.R. Hooyman, Creating a vision for the future: key competencies and strategies for culturally
[26]
[27]
[28]
[29]
[30]
[31] [32]
[33]
[34]
[35]
[36]
[37] [38] [39]
989
competent practice with lesbian, gay, bisexual, and transgender (LGBT) older adults in the health and human services, J. Gerontol. Soc. Work 57 (2-4) (2014) 80–107. Office of Minority Health, U.S. Department of Health and Human Services. National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care: A Blueprint for Advancing and Sustaining CLAS Policy and Practice, (2013) p 192. The Joint Commission: Advancing Effective Communication, Cultural Competence, and Patient- and Family-Centered Care for the Lesbian, Gay, Bisexual, and Transgender (LGBT) Community: A Field Guide. LGBTFieldGuide. pdf., The Joint Commission, Oak Brook, IL, 2011. J.E. Burkhalter, L. Margolies, H.O. Sigurdsson, et al., The national LGBT cancer action plan: a white paper of the 2014 national summit on cancer in the LGBT communities, LGBT Health 3 (1) (2016) 19–31. S. Bristol, T. Kostelec, R. MacDonald, Improving emergency health care workers’ knowledge, competency, and attitudes toward lesbian, gay, bisexual, and transgender patients through interdisciplinary cultural competency training, J. Emerg. Nurs. 44 (6) (2018) 632–639. K.I. Fredriksen-Goldsen, C.P. Hoy-Ellis, J. Goldsen, C.A. Emlet, N.R. Hooyman, Creating a vision for the future: key competencies and strategies for culturally competent practice with lesbian, gay, bisexual, and transgender (LGBT) older adults in the health and human services, J. Gerontol. Soc. Work 57 (2-4) (2014) 80–107. J.T. Jann, E.K. Edmiston, J.M. Ehrenfeld, Important considerations for addressing LGBT health care competency, Am. J. Public Health 105 (11) (2015) e8. C. Lelutiu-Weinberger, P. Pollard-Thomas, W. Pagano, N. Levitt, E.I. Lopez, S.A. Golub, et al., Implementation and evaluation of a pilot training to improve transgender competency among medical staff in an urban clinic, Transgend. Health 1 (1) (2016) 45–53. A. Radix, S. Maingi, LGBT cultural competence and interventions to help oncology nurses and other health care providers, Semin. Oncol. Nurs. 34 (1) (2018) 80–89. M.A. Ruben, J.C. Shipherd, D. Topor, C.G. AhnAllen, C.A. Sloan, H.M. Walton, et al., Advancing LGBT health care policies and clinical care within a large academic health care system: a case study, J. Homosex. 64 (10) (2017) 1411–1431. A.O. Sekoni, N.K. Gale, B. Manga-Atangana, A. Bhadhuri, K. Jolly, The effects of educational curricula and training on LGBT-specific health issues for healthcare students and professionals: a mixed-method systematic review, J. Int. AIDS Soc. 20 (1) (2017) 21624. K. Walker, M. Arbour, J. Waryold, Educational strategies to help students provide respectful sexual and reproductive health care for lesbian, gay, bisexual, and transgender persons, J. Midwifery Womens Health 61 (6) (2016) 737–743. LGBT Cultural Competency Toolkit, National LGBT Cancer Network, (2017) . https://cancer-network.org/programs/cultural-competency-training/. Cancer and LGBT People, National LGBT Health Education Center, (2017) . https://www.lgbthealtheducation.org/topic/cancer-and-lgbt-people/. Affirming LGBT People through Effective Communication, National LGBT Education Center, (2017) . https://www.lgbthealtheducation.org/lgbteducation/learning-modules/.
Contents lists available at ScienceDirect
Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Developing a web-based LGBT cultural competency training for oncologists: The COLORS training Julia Seaya,* , Amanda Hicksb , Merry Jennifer Markhamb , Matthew Schlumbrechta , Meghan Bowmanc, Jennifer Woodardb , Austin Kollefratha , Daniela Diegoa , Gwendolyn P. Quinnd, Matthew B. Schabathc a
Sylvester Comprehensive Cancer Center, 1475 NW 12th Ave, Miami, FL 33136, United States University of Florida Health Cancer Center, 2033 Mowry Rd, Gainesville, FL 32610, United States c H. Lee Moffitt Cancer Center & Research Institute, 12902 USF Magnolia Drive, Tampa, FL 33612, United States d New York University School of Medicine, 550 First Ave, New York, NY 10016, United States b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 9 August 2018 Received in revised form 9 December 2018 Accepted 5 January 2019
Objective: Despite substantial LGBT cancer health disparities, there are no LGBT cultural competency trainings tailored for oncologists. Here we describe the systematic development of a web-based, oncology-focused LGBT cultural competency training. Methods: A literature review regarding LGBT cancer outcomes and competency training was conducted to identify potential training content. An expert panel meeting, including LGBT cancer survivors, cultural competency experts, oncologists, a web designer, and an instructional designer, was held to solidify the training content focus. Following the panel, the training was developed in collaboration with an instructional designer, a web designer, and LGBT community members. Results: The training modules include: 1) LGBT Basics; 2) Inclusive Environments; 3) Initiating Oncology Care with LGBT Patients; and 4) Issues in Cancer Survivorship among LGBT Patients. Module content is interactive, and models effective communication. Conclusion: The process of collaboration with a diverse group of stakeholders and three cancer centers in Florida has resulted in a practical and efficient web-based resource for LGBT cultural competency training for oncologists. Practice implications: Feedback from stakeholders indicates that training in this area is needed and will be well-received by oncologists. We are currently conducting an evaluation of this training among oncologists and LGBT community members. © 2019 Published by Elsevier B.V.
Keywords: LGBT Cultural competency Oncology Training Web-based
1. Introduction Sexual and gender minority (SGM) groups (i.e., LGBTQ) experience substantial health disparities in cancer survivorship and quality of life (QOL) outcomes [1–14]. LGBT cancer survivors report greater distress and more prevalent relationship difficulties than their heterosexual and cisgender counterparts [3,7,9,10]. Moreover, LGBT cancer survivors demonstrate increased likelihood of engaging in alcohol, tobacco, and illicit substance use compared to heterosexual and cisgender survivors [4,7,8]. Given these findings, it is not surprising LGBT cancer survivors report poorer overall health and QOL than heterosexual/cisgender survivors
* Corresponding author at: 1120 NW 14th St. Room 1233, Miami, FL 33136, United States. E-mail address: [email protected] (J. Seay). https://doi.org/10.1016/j.pec.2019.01.006 0738-3991/© 2019 Published by Elsevier B.V.
[2,5,11]. These findings are alarming, considering there are an estimated one million LGBT cancer survivors in the US [15]. While previous studies have elucidated these disparities in cancer survivorship outcomes among LGBT cancer survivors, few have examined why these disparities exist and how best to address them. These few studies have suggested that poorer patientprovider communication and lack of provider competency regarding the unique needs of LGBT patients may contribute to disparities [1–14]. Thus, oncology care providers may benefit from LGBT cultural competency training aimed at improving LGBT patient care and ultimately survivorship outcomes. For example, a previous study reported LGBT cancer patients experienced lower satisfaction with their treatment and care compared to heterosexual patients, indicating LGBT patients may have cancer care needs that remain unaddressed through standard didactic training and conventional practices [6]. LGBT individuals may feel hesitant to disclose their sexual orientation and/or gender identity (SOGI) to
J. Seay et al. / Patient Education and Counseling 102 (2019) 984–989
oncology care providers due to fear of discrimination, and oncology care providers may not feel confident in their ability to discuss SOGI in a competent manner [11, 14]. Lack of disclosure of SOGI may negatively impact patient satisfaction and may limit patients’ abilities to include their partners and other members of their social support system in their cancer care, increasing potential for poorer survivorship outcomes [11, 14]. Moreover, lack of disclosure may prevent LGBT patients and survivors from receiving tailored and personalized care that best meets their unique needs. As cancer disparities in the LGBT community is largely an ignored public health issue, there is a gap in clinical practice guidelines in oncology care across the cancer care continuum and a lack of knowledge of best practice behaviors with this historically marginalized community. As such, there is an emerging need to develop cultural competency training for oncology care providers including communication skill building to address the unique health needs of LGBT patients. Providing such training for oncologists may improve the patient care experience, and thus ultimately impact survivorship outcomes among LGBT patients. To date, there are limited studies that have examined the effects of LGBT cultural competency and skill building trainings, and these types of trainings have been shown to positively influence provider beliefs and attitudes [16–18]. Nonetheless, many medical schools do not yet include LGBT competency training, and those that do average only 5 h of instruction [19–21]. Schabath et al. conducted both a single center survey and national survey of oncologists at National Cancer Institute-Designated Comprehensive Cancer Centers and found substantial proportions of providers do not feel confident in their knowledge of LGBT health needs [22, 23]. Additionally, a majority of the oncologists surveyed endorsed interest in LGBT-related education [22, 23]. Informed by the aforementioned findings regarding LGBT cancer disparities, as well as the need and desire for LGBT competency training among oncologists, we developed an online LGBT cultural competency training, focused on communication skill-building for oncologists, the Curriculum for Oncologists on LGBT populations to Optimize Relevance and Skills (COLORS). The development of the COLORS training was organized and led by academic investigators at three cancer centers in Florida: H. Lee Moffitt Cancer Center & Research Institute (MCC), Sylvester Comprehensive Cancer Center at University of Miami (UM), and University of Florida Health Cancer Center (UF). The COLORS training was developed with substantial input from LGBT-serving community partners, cultural competency experts, LGBT cancer survivors, researchers, and oncologists. Guided by the TIDieR intervention reporting framework [24], this paper describes the process of our collaborative, community-engaged training development, including challenges and lessons learned. We intend to share our curriculum development process with relevant stakeholders to inform future development of competency trainings aiming to address LGBT cancer health disparities. 2. Methods 2.1. Training development 2.1.1. Literature review Prior to beginning the development of the web-based cultural competency training, we reviewed published literature and other online educational resources pertaining to LGBT cultural competency training. The goal of this review was to identify the following: 1) previous recommendations for the development of LGBT cultural competency training; 2) findings regarding the effectiveness of previously developed LGBT cultural competency trainings; and 3) examples of LGBT cultural competency training content, including measures of training effectiveness. We found
985
several organizations, including the AAMC, recommend healthcare providers undergo LGBT cultural competency training [25–27]. We identified few previously-developed LGBT cultural competency trainings for healthcare providers and no LGBT cultural competency trainings tailored specifically for oncologists. Most trainings focused on more general content, such as SOGI terminology, or centered on LGBT health disparities [16, 17, 28–36]. Additionally, most trainings were delivered in-person, and were evaluated by examining the change in attitudes and beliefs of physicians prior to and directly after completing the training, and most showed positive results [16, 17, 29–36]. We also reviewed LGBT cultural competency training materials from several sources, including peer-reviewed literature, online training sites, and LGBT-serving organizations [37–39]. Ultimately, this review informed the development of the COLORS training with the goal of expanding on previous efforts to improve LGBT cultural competency among oncologists. This review also informed the next step in the development process, the expert panel. This research was approved by the Institutional Review Boards at Advarra, Inc. (Columbia, MD), University of Miami, and University of Florida. 2.1.2. Expert panel The aforementioned review revealed that diverse stakeholders, including LGBT community members, academic investigators, and clinicians, were not always consistently consulted in the development of cultural competency training curricula. Since each of these stakeholders may provide pivotal input in the development of cultural competency training for oncologists, a single, day-long expert panel of twelve individuals was convened. The panel included two cancer survivors, three LGBT cultural competency experts, an instructional designer, a web designer, two medical researchers who were not part of our research team, and a clinical oncologist from each of three institutions who were not part of our research team. The LGBT cancer survivors and cultural competency experts were identified via previous community partnerships established by the University of Miami Principal Investigator (JS). The remaining panelists were identified via previous academic relationships with the several members of the investigative team. The goals of the panel were to: (1) identify the key domains for increasing LGBT cultural competency and communication skills of oncologists; (2) identify appropriate content for each of these aims; and (3) identify appropriate delivery methods of training content. The expert panel session began with a review of the goals of the panel, specifically: 1) key LGBT health content areas (modules) for training; 2) the method of delivery of the training; 3) the length of training; 4) whether the training would offer CMEs or other certification opportunities; 5) instructions for each module; and 6) the target audience for the receipt of training. Several draft examples of potential training content and delivery were presented and discussions were conducted to obtain feedback. We initially proposed a 2-hour long training session targeted at medical oncologists, consisting of four potential modules, including both basic and oncology-specific LGBT health content. We developed initial draft learning objectives, content, and delivery methods for each module as a basis for discussion with the stakeholders. For each module, a study investigator presented the materials to the panel and solicited feedback on the objectives, content, and delivery methods. Each module was discussed for approximately one hour. The panel provided general feedback regarding the overall format of the training, and regarding specifics of the training content. The clinician panelists asserted the overall training should be as brief as possible, self-paced, and as oncologists have extremely busy clinical schedules, have the ability to complete the training altogether at once or at different times. The clinician
986
J. Seay et al. / Patient Education and Counseling 102 (2019) 984–989
and LGBT cultural competency expert panelists concurred that the training should be interactive, and involve activities requiring trainees to apply what they learn. The clinician panelists in particular suggested the interactive activities included in the COLORS training should require the user to click on several parts of the webpage to advance. These panelists believed that unless participants were required to click, they may just scan through the whole training at once to quickly arrive at the end. The clinicians noted many web-based trainings do not include interactive options, and panelists doubted that a narrated PowerPoint-style training would be effective based on their previous experiences with this format. The LGBT cultural competency experts and community members also relayed that the interactive design would more effectively improve skills, rather than a traditional PowerPoint design, which may only be effective in improving knowledge. During the panel session, the web designer and instructional designer confirmed this interactive format was feasible to develop, given our budget and shared resources. Regarding the specific training content, all panelists concurred the training modules should not include long lists of facts, but rather a focus on skill-building. Panelists suggested the inclusion of statistics regarding LGBT health disparities would be most helpful when presented at the beginning of the training, rather than interspersed as lists of facts and research findings throughout the training modules. When discussing specific module content, several points of compromise arose between clinicians and LGBT cultural competency experts and community members. For example, when discussing training content regarding inclusive clinic environments, the LGBT cultural competency experts and LGBT community members noted the importance of several areas of focus including: collecting SOGI information on intake forms, posting a non-discrimination policy in the clinic, and creating gender-neutral clinic restrooms. The clinician panelists noted, however, that most clinicians in academic medical centers do not have control over these institutional factors. The clinician panelists asserted that each area of the training should provide advice that is actionable for oncologists. Ultimately, it was decided that our team would develop training content regarding inclusive clinic environments, but tailor this content to provide oncologists with a concrete, actionable skillset (see training content sections below for details regarding the inclusive environments module). In particular, we decided to train oncologists to assess the inclusiveness of their clinic environment focusing on the aspects of the environment stressed as important by the cultural competency experts and offer actionable pieces of advice for compensating in light of finding potentially or actually non-inclusive clinic elements. For the most part, the content areas proposed for each module (described below) were accepted by the panelists, and the discussion centered mostly on delivery of the training content. Given that panelists concurred the training should be interactive, we collectively agreed the training content should include instructional activities requiring participants to “click” to reveal information, and interactive case vignettes requiring participants to make clinical decisions and communication choices with LGBT patients. We collectively decided to include two short videos within the training to provide real-world examples, as well as two application exercises that involve participants filling in personal information regarding themselves as well as their own clinic environment to encourage reflection. The specific training content for each module is described in the sections below. Finally, once we solidified training content and delivery, panelists aided in fine-tuning the approach, highlighting some important factors in training development to consider. First, our LGBT cultural competency experts and community members stressed that training needed to incorporate intersectionality,
the concept that multiple aspects of identity (e.g., age, race/ ethnicity, and sexual orientation) may interact to influence outcomes and are important to consider, in a meaningful way. The panel agreed providers should walk away with a basic understanding that sexual and gender minority groups are not monolithic and be able to understand an intersectional approach to cultural competency. In response to this feedback, as described in the Training Content sections below, we incorporated training around the concept of intersectionality directly in Module 1, as well as via the interactive case vignettes. In a similar vein, the LGBT cultural competency experts and community members noted any case vignettes included as part of the training needed to be as diverse as possible. Stock photos of patients tend to include hetero and cisnormative images, and thus, we would need to work to find more representative photos for case vignettes. As described in the Training Content sections below, our study team strove to incorporate and integrate this valuable feedback from the expert panel throughout the development of the training. 2.1.3. Online curriculum development Based on feedback from the expert panel, we emerged from the panel with the following four modules in development: 1) LGBT Basics; 2) Inclusive Environments; 3) Initiating Oncology Care with LGBT Patients; and 4) Issues in Cancer Survivorship among LGBT Patients. Each of the modules includes a didactic portion and an interactive portion. The didactic portion provides participants with basic training, and the interactive portions require participants to apply what they have learned to interactive case vignettes and scenarios. A particular highlight of the training is that almost all interactive activities are focused on communication, and thereby model effective communication with patients. The development of the online training was both iterative and collaborative, encompassing a multi-month process and engaging not only the academic investigative team, but also two of the LGBT cultural competency experts, the instructional designer, and the web designer from the previous expert panel. Our collaborative team met weekly as well as worked independently to develop the training content. We developed content templates for each module, as well as for each module’s interactive activities, to streamline content development. These content templates were developed online on a shared drive, and the study team was able to comment and edit each module in real time. Each institution (MCC, UM, UF) was responsible for taking the lead on developing content for each of the first three modules, and the institutions collectively lead the development the fourth module. Once the drafts were completed for the training content, the initial drafts were reviewed by the LGBT cultural competency experts and content was edited based on their feedback. Final content was given to the web designer, who then developed the online training platform. Once the website was launched, our investigative team worked iteratively with the web designer to review and refine content. 2.2. Training content 2.2.1. Module 1—“LGBT Basics” Based on the feedback of the expert panel, as well as the cultural competency consultants, Module 1 is entitled “LGBT Basics” and focuses on SOGI terminology, intersectionality, the importance of understanding SOGI within the context of clinical care, and communication skills around discussing SOGI with patients. The collaboratively-determined learning objectives for Module 1 are: 1) Define and use SOGI terms 2) Recognize the importance of understanding and be able to communicate about SOGI with oncology patients 3) Identify inclusive language to use with oncology patients
J. Seay et al. / Patient Education and Counseling 102 (2019) 984–989
Module 1 activities include an interactive terminology activity, intersectionality activity, patient testimonial video, and two case vignettes. The interactive terminology activity requires participants to click on SOGI terms to learn their definitions, and allows participants to zoom in and out of a map of terms, such that they could better understand how these terms relate (or do not relate) to one another. The intersectionality activity provides a brief description of the concept of intersectionality and its effects on health outcomes, and then prompts the trainee to reflect on multiple aspects of their own identity, including aspects that could be associated with power as well as aspects that could be associated with disadvantage. On the advice of the cultural competency experts, the development of an understanding of intersectionality via self-reflection may encourage participants to reflect on how intersectionality may influence health outcomes among the patient populations they serve. The patient testimonial video comprised a series of LGBT patients who were not actors. These patients described their experiences seeking healthcare, and emphasized the importance of communication around SOGI and cultural competency. By including this short video, we aimed to emphasize the real-world, human element to the concepts illustrated by the training module. Finally, the two case vignettes focused on the discussion of SOGI. Each vignette presents participants with an initial problem, and participants must choose between two different approaches to address the problem. Each approach includes a dialogue illustrating how the physician will communicate with the patient in the vignette. Once a participant chooses one of the two approaches, they are led to an outcome, which is either positive or negative based on their choice. They are then given two more approaches to address the outcome and are led to a final outcome for their path through the vignette. Participants whose choices lead to a negative final outcome must re-do the vignette until they make the correct choices. Each vignette highlighted important communication considerations around discussing SOGI, including the use of preferred pronouns, asking open-ended questions, and how to address any patient discomfort regarding the discussion of sexual orientation and sexual behavior. Notably, each module takes approximately 30 min to complete, and the entire COLORS training takes approximately 2 h to complete. 2.2.2. Module 2—“Inclusive Environments” Module 2 is entitled “Inclusive Environments,” and focuses on the elements of the clinic environment and the messages these elements may send to LGBT patients regarding provider awareness and acceptance of LGBT patients and their support network. These elements of the environment include intake forms, non-discrimination policies, clinic decorations and reading materials, the clinic website, and clinic restrooms. In addition to calling attention to elements of the environment, this module demonstrated how oncologists can assess their own clinic environment and demonstrated actionable steps that oncologists can take to promote inclusivity and reflect that inclusivity in the clinic environment. The learning objectives for Module 2 were: 1) Recognize environmental factors in the oncology clinic that may communicate negative messages to LGBT oncology patients. 2) Assess the inclusiveness of your own clinic environment and what it might communicate to patients presenting in the clinic 3) Develop strategies for signaling acceptance of LGBT patients. Module 2 activities include a video regarding inclusive clinic environments, an interactive clinic activity, as well as a clinic evaluation exercise. The video, “Vanessa Goes to the Doctor,” was originally produced by the National LGBT Cancer Network, and is used in the training with permission from their leadership [37].
987
The video chronicles the experiences of a transgender patient entering a clinic, and provides examples of a non-inclusive and an inclusive clinic space. After viewing the video, participants are prompted to complete an interactive clinic activity, where they evaluate the clinic environment from the oncologist’s perspective. This activity allows participants to select how they address various elements of non-inclusivity found in a clinic environment. Finally, participants are prompted to complete, in survey format, an evaluation of their own clinic environment. As part of the evaluation, participants are encouraged to select one or more ways they will address non-inclusive elements of their own clinic revealed in their evaluation. 2.2.3. Module 3—“initiating oncology care with LGBT patients” Module 3 is entitled, “Initiating Oncology Care with LGBT Patients,” and focuses on several important care considerations during the initiation of oncology care: welcoming LGBT patients’ sources of social support, making informed treatment decisions, and considerations in end-of-life discussions. The learning objectives for Module 3 were: 1) Welcome and effectively communicate with LGBT patients’ sources of social support 2) Understand the unique needs of LGBT patients regarding their cancer diagnosis and care plan 3) Understand unique considerations in discussions of end-of-life care and decision-making Module 3 activities include three interactive case vignettes. Each vignette is preceded by a brief introductory narration to orient the participant to the vignette topic and the points to be considered. Each interactive case vignette follows the format of the interactive case vignettes described in Module 1. The first vignette covers communication with LGBT patients’ sources of social support and highlights the fact that LGBT patients are less likely than heterosexual and cisgender patients to have primary sources of social support who are biological family members. The second vignette covers hormone therapy considerations for a transgender patient undergoing cancer treatment, and emphasized that unless explicitly contraindicated, oncologists should consider continuing transgender patients on hormone therapy throughout cancer treatment. Finally, the third vignette explores considerations around end-of-life discussions with LGBT patients and highlight that LGBT patients are more likely to need legal assistance to ensure appropriate parties are designated as power of attorney, as well as to ensure that custody of children goes to the appropriate party, as these parties are less likely to be legal spouses or biological family members of the child. 2.2.4. Module 4—“issues in cancer survivorship among LGBT patients” Module 4 is entitled, “Issues in Cancer Survivorship among LGBT Patients,” and focuses on considerations that may arise in cancer survivorship for LGBT patients, such as discussion of supportive care, body image and sexual side effects of treatment, as well as fertility concerns. The learning objectives for Module 4 are: 1) To demonstrate knowledge of unique considerations for LGBT patients during active treatment and cancer survivorship 2) To recognize unique concerns for LGBT patients in relation to intimacy and quality of life. 3) To discuss in a culturally competent manner concerns about body image and fertility with LGBT survivors Module 4 activities include three interactive case vignettes. Each vignette is preceded by a brief introductory narration to orient the participant to the vignette topic and the points to be
988
J. Seay et al. / Patient Education and Counseling 102 (2019) 984–989
considered. Each interactive case vignette follows the format of the interactive case vignettes described in Module 1. The first vignette covers consideration for the discussion of sexual side effects of treatment, and emphasizes the importance of understanding how these effects may differ for LGBT patients, how to ask open-ended questions, as well as the importance of not making assumptions regarding sexual behavior. The second vignette covers considerations around the discussion of breast reconstruction, and emphasizes the importance of inquiring about patient needs without making assumptions about a patient’s desired body image. The third vignette covers considerations for discussions of fertility and emphasizes the importance of not making assumptions regarding patients’ wishes to have children, and the use of inclusive language and gender-neutral terminology, including ways of referring to sexual reproductive organs, during the discussion. 3. Discussion This paper describes the processes utilized to develop a webbased LGBT cultural competency training in less than 12 months. One of the major lessons learned was the inherent value in working with diverse stakeholders in developing this training. However, integrating these perspectives was challenging at times. For example, some of the issues highlighted by the community partners were deemed not actionable by the oncologists with whom we consulted. Additionally, some of the oncologists asked for the training to be very time-limited, which would have limited our ability to engage with the content deemed essential by community partners. Cumulatively, compromises were made between each stakeholder’s perspectives to achieve the best version of our training. The expert panel achieved these compromises by having all stakeholders in the room together with an open discussion of differences of opinion regarding training content and delivery. We recommend investigators seeking to work with diverse stakeholders provide the opportunity not only to interface with each stakeholder independently, but to allow stakeholders to discuss the issues as a group to ensure that inevitable compromises are amenable to each stakeholder group. Additionally, while we believe the COLORS training will best meet the needs of oncologists and the LGBT patients they serve, we acknowledge that in developing an online, rather than in-person training, we faced unique challenges. Firstly, the development of the online training took nearly twice the time we would expect to develop for an in-person training. Part of this was due to the training content. Feedback from the expert panel indicated the training should be interactive, and thus, content development was far more complicated for both the investigative team and the web designer. A particular issue with the interactive content was the need to consider many dimensions of content delivery which do not have to be considered with in-person training. For example, we had to envision how participants would click through the interactive activities, how much information to include on each page, and how to make the flow cohesive so the training would be understandable and easy to use. These considerations involved several revisions to the web modules, even after we had solidified specific training content. Our web designer incorporated a commenting feature into our pilot website so that the study team could review the web content and comment with questions and suggestions for revision. Furthermore, our training was developed based on prior research, needs, and perspectives of LGBT patients and oncologists in the US. While we believe that some of our content may be transferrable to other countries and cultures outside of the US, we acknowledge that extensive research would be needed to verify
the cultural appropriateness and effectiveness of the training within these countries prior to dissemination of the training outside of US. We are currently in the process of piloting the fully-developed COLORS training among oncologists, as well as eliciting LGBT community feedback regarding the training via qualitative focus groups. For the pilot study, we are enrolling oncologists at each of our institutions, having them complete the training, and examining pre-post changes in LGBT-related knowledge, attitudes, and clinical practices, as well as overall feasibility and acceptability of the training. Results of the pilot study are forthcoming, we aim to use the pilot results to address LGBT cancer survivorship disparities through the further tailoring and expansion of our training. Funding The current project is funded by the Florida Academic Cancer Center Alliance (FACCA). FACCA did not have any role the design, development, or implementation of the current project, nor was FACCA involved in the development and submission of this manuscript. Conflicts Dr. Quinn reports her former institution, Moffitt Cancer Center, received funding from Boeringer Ingelheim of which she was PI, for a study on lung cancer biomarkers, unrelated to this study. Acknowledgements We would like to acknowledge all of our COLORS expert panelists who provided their invaluable expertise: Ines Mevs, Cindy Brown, John Kiluk, Judith Hurley, Jennifer Lopez, Charles Kamen, Rodrigo Carvajal, Jacqueline Castagno, Liz Margolies, and Naomi Cobb. Additionally we would like to thank the National LGBT Cancer Network for providing LGBT competency training expertise and educational materials. We would also like to acknowledge our web designer, Rob Martin, our instructional designer, Allison Haskell, and our research coordinator, Luisa Duarte, for providing their expertise and efforts in our training development. References [1] J.M. Jabson, D.J. Bowen, Perceived stress and sexual orientation among breast cancer survivors, J. Homosex. 61 (6) (2014) 889–898. [2] J.M. Jabson, R.J. Donatelle, D. Bowen, Breast cancer survivorship: the role of perceived discrimination and sexual orientation, J. Cancer Surviv.: Res. Pract. 5 (1) (2011) 92–101. [3] J.M. Jabson, R.J. Donatelle, D.J. Bowen, Relationship between sexual orientation and quality of life in female breast cancer survivors, J. Womens Health (Larchmt.) 20 (12) (2011) 1819–1824. [4] J.M. Jabson, G.W. Farmer, D.J. Bowen, Stress mediates the relationship between sexual orientation and behavioral risk disparities, BMC Public Health 14 (2014) 401. [5] J.M. Jabson, G.W. Farmer, D.J. Bowen, Health behaviors and self-reported health among cancer survivors by sexual orientation, LGBT Health 2 (1) (2015) 41–47. [6] J.M. Jabson, C.S. Kamen, Sexual minority cancer survivors’ satisfaction with care, J. Psychosoc. Oncol. 34 (1-2) (2016) 28–38. [7] C. Kamen, J.R. Blosnich, M. Lytle, M.C. Janelsins, L.J. Peppone, K.M. Mustian, Cigarette smoking disparities among sexual minority cancer survivors, Prev. Med. Rep. 2 (2015) 283–286. [8] C. Kamen, K. Mustian, M.O. Johnson, U. Boehmer, Same-sex couples matter in cancer care, J. Oncol. Pract. 11 (2) (2015) 212–215. [9] C. Kamen, K.M. Mustian, A. Dozier, D.J. Bowen, Y. Li, Disparities in psychological distress impacting lesbian, gay, bisexual and transgender cancer survivors, Psychooncology 24 (11) (2015) 1384–1391. [10] C. Kamen, K.M. Mustian, C. Heckler, M.C. Janelsins, L.J. Peppone, S. Mohile, et al., The association between partner support and psychological distress among prostate cancer survivors in a nationwide study, J. Cancer Surviv.: Res. Pract. 9 (3) (2015) 492–499.
J. Seay et al. / Patient Education and Counseling 102 (2019) 984–989 [11] C. Kamen, O. Palesh, A.A. Gerry, M.A. Andrykowski, C. Heckler, S. Mohile, et al., Disparities in health risk behavior and psychological distress among gay versus heterosexual male cancer survivors, LGBT Health 1 (2) (2014) 86–92. [12] C.S. Kamen, M. Smith-Stoner, C.E. Heckler, M. Flannery, L. Margolies, Social support, self-rated health, and lesbian, gay, bisexual, and transgender identity disclosure to cancer care providers, Oncol. Nurs. Forum 42 (1) (2015) 44–51. [13] G.P. Quinn, J.A. Sanchez, S.K. Sutton, S.T. Vadaparampil, G.T. Nguyen, B.L. Green, et al., Cancer and lesbian, gay, bisexual, transgender/transsexual, and queer/ questioning (LGBTQ) populations, CA Cancer J. Clin. 65 (5) (2015) 384–400. [14] G.P. Quinn, M.B. Schabath, J.A. Sanchez, S.K. Sutton, B.L. Green, The importance of disclosure: lesbian, gay, bisexual, transgender/transsexual, queer/ questioning, and intersex individuals and the cancer continuum, Cancer 121 (8) (2015) 1160–1163. [15] U. Boehmer, X. Miao, A. Ozonoff, Survivorship and sexual orientation, Cancer 117 (2011) 3796–3804. [16] V.L. Leyva, E.M. Breshears, R. Ringstad, Assessing the efficacy of LGBT cultural competency training for aging services providers in California’s central valley, J. Gerontol. Soc. Work 57 (2-4) (2014) 335–348. [17] K.E. Porter, L. Krinsky, Do LGBT aging trainings effectuate positive change in mainstream elder service providers? J. Homosex. 61 (1) (2014) 197–216. [18] J.M. Jabson, J.W. Mitchell, S.B. Doty, Associations between non-discrimination and training policies and physicians’ attitudes and knowledge about sexual and gender minority patients: a comparison of physicians from two hospitals, BMC Public Health 16 (2016) 256. [19] J. Griggs, S. Maingi, V. Blinder, N. Denduluri, A.A. Khorana, L. Norton, et al., American society of clinical oncology position statement: strategies for reducing cancer health disparities among sexual and gender minority populations, J. Clin. Oncol. (2017). [20] J. Moll, P. Krieger, L. Moreno-Walton, B. Lee, E. Slaven, T. James, D. Hill, S. Podolsky, T. Corbin, S.L. Heron, The prevalence of lesbian, gay, bisexual, and transgender health education and training in emergency medicine residency programs: what do we know? Acad. Emerg. Med. 21 (5) (2014) 608–611. [21] A. Ambrose, S. Lin, M. Chun, Cultural competency training requirements in graduate medical education, J. Grad. Med. Educ. 5 (2) (2013) 227–231. [22] G. Shetty, J.A. Sanchez, J.M. Lancaster, L.E. Wilson, G.P. Quinn, M.B. Schabath, Oncology healthcare providers' knowledge, attitudes, and practice behaviors regarding LGBT health, Patient Educ. Couns. 99 (10) (2016) 1676–1684 23. [23] M.B. Schabath, C.A. Blackburn, M.E. Sutter, P.A. Kanetsky, S.T. Vadaparampil, V. N. Simmons, J.A. Sanchez, S.K. Sutton, G.P. Quinn, National survey of oncologists at national cancer institute-designated comprehensive cancer centers: attitudes, knowledge, and practice behaviors about LGBTQ cancer patients, J. Clin. Oncol. (2018) (In press). [24] T. Hoffmann, P. Glasziou, I. Boutron, R. Milne, R. Perera, D. Moher, D. Altman, V. Barbour, H. Macdonald, M. Johnston, S. Lamb, M. Dixon-Woods, P. McCulloch, J. Wyatt, A. Chan, S. Michie, Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide, BMJ 348 (2014) g1687. [25] K.I. Fredriksen-Goldsen, C.P. Hoy-Ellis, J. Goldsen, C.A. Emlet, N.R. Hooyman, Creating a vision for the future: key competencies and strategies for culturally
[26]
[27]
[28]
[29]
[30]
[31] [32]
[33]
[34]
[35]
[36]
[37] [38] [39]
989
competent practice with lesbian, gay, bisexual, and transgender (LGBT) older adults in the health and human services, J. Gerontol. Soc. Work 57 (2-4) (2014) 80–107. Office of Minority Health, U.S. Department of Health and Human Services. National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care: A Blueprint for Advancing and Sustaining CLAS Policy and Practice, (2013) p 192. The Joint Commission: Advancing Effective Communication, Cultural Competence, and Patient- and Family-Centered Care for the Lesbian, Gay, Bisexual, and Transgender (LGBT) Community: A Field Guide. LGBTFieldGuide. pdf., The Joint Commission, Oak Brook, IL, 2011. J.E. Burkhalter, L. Margolies, H.O. Sigurdsson, et al., The national LGBT cancer action plan: a white paper of the 2014 national summit on cancer in the LGBT communities, LGBT Health 3 (1) (2016) 19–31. S. Bristol, T. Kostelec, R. MacDonald, Improving emergency health care workers’ knowledge, competency, and attitudes toward lesbian, gay, bisexual, and transgender patients through interdisciplinary cultural competency training, J. Emerg. Nurs. 44 (6) (2018) 632–639. K.I. Fredriksen-Goldsen, C.P. Hoy-Ellis, J. Goldsen, C.A. Emlet, N.R. Hooyman, Creating a vision for the future: key competencies and strategies for culturally competent practice with lesbian, gay, bisexual, and transgender (LGBT) older adults in the health and human services, J. Gerontol. Soc. Work 57 (2-4) (2014) 80–107. J.T. Jann, E.K. Edmiston, J.M. Ehrenfeld, Important considerations for addressing LGBT health care competency, Am. J. Public Health 105 (11) (2015) e8. C. Lelutiu-Weinberger, P. Pollard-Thomas, W. Pagano, N. Levitt, E.I. Lopez, S.A. Golub, et al., Implementation and evaluation of a pilot training to improve transgender competency among medical staff in an urban clinic, Transgend. Health 1 (1) (2016) 45–53. A. Radix, S. Maingi, LGBT cultural competence and interventions to help oncology nurses and other health care providers, Semin. Oncol. Nurs. 34 (1) (2018) 80–89. M.A. Ruben, J.C. Shipherd, D. Topor, C.G. AhnAllen, C.A. Sloan, H.M. Walton, et al., Advancing LGBT health care policies and clinical care within a large academic health care system: a case study, J. Homosex. 64 (10) (2017) 1411–1431. A.O. Sekoni, N.K. Gale, B. Manga-Atangana, A. Bhadhuri, K. Jolly, The effects of educational curricula and training on LGBT-specific health issues for healthcare students and professionals: a mixed-method systematic review, J. Int. AIDS Soc. 20 (1) (2017) 21624. K. Walker, M. Arbour, J. Waryold, Educational strategies to help students provide respectful sexual and reproductive health care for lesbian, gay, bisexual, and transgender persons, J. Midwifery Womens Health 61 (6) (2016) 737–743. LGBT Cultural Competency Toolkit, National LGBT Cancer Network, (2017) . https://cancer-network.org/programs/cultural-competency-training/. Cancer and LGBT People, National LGBT Health Education Center, (2017) . https://www.lgbthealtheducation.org/topic/cancer-and-lgbt-people/. Affirming LGBT People through Effective Communication, National LGBT Education Center, (2017) . https://www.lgbthealtheducation.org/lgbteducation/learning-modules/.