Journal of Scholastic Inquiry Behavioral Sciences, Volume 5, Issue 1, Spring 2016 by Center for Scholastic Inquiry

Journal of Scholastic Inquiry: Behavioral Sciences

Volume 5, Page 1

Journal of Scholastic Inquiry:

Behavioral Sciences

Behavioral Sciences Edition, Volume 5, Issue 1 Spring 2016

Published by: Center for Scholastic Inquiry, LLC ISSN: 2330-2330-6750 (online) ISSN: 2330-6742 (print)

Journal of Scholastic Inquiry: Behavioral Sciences

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Journal of Scholastic Inquiry: Behavioral Sciences

Spring 2016

Volume 5, Issue 1

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Journal of Scholastic Inquiry: Behavioral Sciences The Center for Scholastic Inquiry (CSI) publishes the Journal of Scholastic Inquiry: Behavioral Sciences (JOSI: BS) to recognize, celebrate, and highlight scholarly research, discovery, and evidence-based practice in the behavioral sciences field. Academic research emphasizing leading edge inquiry, distinguishing and fostering best practice, and validating promising methods will be considered for publication. Qualitative, quantitative, and mixed method study designs representing diverse philosophical frameworks and perspectives are welcome. The JOSI: BS publishes papers that perpetuate thought leadership and represent critical enrichment in the behavioral sciences field. The JOSI: BS is a rigorously juried journal. Relevant research may include topics in sociology, psychology, social work, addiction counseling, professional counseling and therapy, adolescence and youth, adult development, aging, applied psychology, clinical psychology, school psychology, developmental psychology, environmental psychology, clinical social work, school social work, human development, social movements, social structure, substance use and abuse, and related fields. If you are interested in publishing in the JOSI: BS, feel free to contact our office or visit our website. Sincerely,

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JOURNAL OF SCHOLASTIC INQUIRY: BEHAVIORAL SCIENCES Spring 2016, Volume 5, Issue 1

Managing Editor Dr. Tanya McCoss-Yerigan

Editor-in-Chief Dr. Jamal Cooks

General Editor & APA Editor Jay Meiners

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Journal of Scholastic Inquiry: Behavioral Sciences

EDITORIAL ADVISORY BOARD Shirley Barnes, Alabama State University Joan Berry, University of Mary Hardin-Baylor Brooke Burks, Auburn University at Montgomery Timothy Harrington, Chicago State University Michelle Beach, Southwest Minnesota State University Kenneth Goldberg, National University Linda Rae Markert, State University of New York at Oswego Lucinda Woodward, Indiana University Southeast Arina Gertseva, Washington State University Robin Davis, Claflin University

PEER REVIEWERS Robin Davis Emily Hause Kristen Cole John Simon Michelle Beach

Joan Berry Ronald Stunda Linda Rae Markert Cathy Ann Tully Rosemarie Michaels

Azim Danesh Lucinda Woodward Howard Lawrence Jodi Brown Ronald Stunda

Not all reviewers are used for each publication cycle.

Teresa Weaver Judith Richards Joyous Bethel Tanya McCoss-Yerigan Veronica Guerrero

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TABLE OF CONTENTS

Publication Agreement and Assurance of Integrity Ethical Standards in Publishing Disclaimer of Liability

9-84

Research Manuscripts Creativity as a Vehicle for Transformation and Social Change Joyous C. Bethel, Millersville University Leonora E. Foels, Millersville University Jennifer M. Frank, Millersville University Kathleen Walsh, Millersville University Karen Rice, Millersville University

The Effect of Formal Clinical Training On Stigma Surrounding Transgender Individuals Kristen H. Cole, University of Indianapolis Mixalis Poulakis, University of Indianapolis Lori Nabors, University of Indianapolis Nidaa F. Kazi, University of Indianapolis Kai Shin (Josephine) Chu, University of Indianapolis Emma Carter, University of Indianapolis Renita Sengupta, University of Indianapolis

End of Life Discussions in the Community Elizabeth R. Houglan Adkins

Issue Framing and Personal Water Use: Prevention vs. Detection Emily L. Hause , Saint Mary’s College of California Rachel M. Fellinger, Saint Mary’s College of California

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PUBLICATION AGREEMENT AND ASSURANCE OF INTEGRITY By submitting a manuscript for publication, authors confirm that the research and writing is their exclusive, original, and unpublished work. Upon acceptance of the manuscript for publication, authors grant the Center for Scholastic Inquiry, LLC (CSI) the sole and permanent right to publish the manuscript, at its option, in one of its academic research journals, on the CSI's website, in other germane, academic publications; and/or on an alternate hosting site or database. Authors retain copyright ownership of their research and writing for all other purposes. ETHICAL STANDARDS IN PUBLISHING The CSI insists on and meets the most distinguished benchmarks for publication of academic journals to foster the advancement of accurate scientific knowledge and to defend intellectual property rights. The CSI stipulates and expects that all practitioners and professionals submit original, unpublished manuscripts in accordance with its code of ethics and ethical principles of academic research and writing.

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Creativity as a Vehicle for Transformation and Social Change Joyous C. Bethel Millersville University Leonora E. Foels Millersville University Jennifer M. Frank Millersville University Kathleen Walsh Millersville University Karen Rice Millersville University

Abstract

Creativity has long been recognized as an expression of one's experiences. Paintner (2007) reminds us that, "Creativity is a powerful shaping force in human life. It is an intangible human capacity of a transcendent nature--it moves us beyond ourselves" (p. 6). Further, she states that creativity helps us find ways to exist more fully and wholly in our world, and facilitates our abilities to live intentionally, honoring ourselves and others (Paintner, 2007). The authors teach a social justice course which explores mechanisms of oppression and which requires students to engage in strategies that promote justice. As students move toward greater accountability for creating and maintaining a more just society, they find themselves transformed. This study explores how one university incorporates creativity and artistic expression as a way to represent and capture this transformation, as well as their commitment to justice and advocacy. Through the use of innovative pedagogical modalities, including a creative project as the culmination of the course, the transformation of students toward social justice is demonstrated. Students commented on their own lived experiences and described the “waking up” process (Adams et al.,

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2013). Some students mentioned that they had never before considered the oppression of groups other than their own. Some mentioned only having a vague awareness of inequity in our society before taking the class. Across the board, however, students identified a desire to get involved in issues of social justice and created art to symbolize this new awareness and commitment to act.

Keywords: Social justice, teaching, creativity, dialogue, civil discourse, diversity

Introduction

The profession of social work has long embraced a call for social justice. In fact, the profession identifies in its Code of Ethics six cardinal values, and links them with ethical standards for professional behavior. These include the dignity and worth of the individual, service, competency, integrity, social and economic justice, and the importance of human relationships. Part of the educative process is to provide information to individuals, which will, hopefully, broaden horizons, inspire the search for further knowledge, which will in turn round the cycle by further discovery and dissemination of new knowledge. With so much new information available to students it seems quite possible that some of it may be forgotten. In considering strategies to help solidify the studentsâ&#x20AC;&#x2122; learning experiences, a series of questions arose: How, in general, can students keep what they have learned? More specifically, how can students in a social justice course, maintain the new lens through which they have learned to see themselves and the world? This paper describes the strategies used by one School of Social Work to solidify transformations that occurs during the process of social justice education. A literature review is offered related to the pedagogy of teaching social justice and to creativity and the possibility of its place in social work education. Following this, a description of assignments, one in particular, housed within a required course in human diversity and social justice is discussed. Included in this will be examples of student projects.

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Literature Review

Teaching social justice is more than discussing a history of injustice. As social work educators we are called upon to equip students via critical thinking, precise assessment, and farreaching strategies of intervention to address and solve social problems. These solutions cannot be limited to what is local. Indeed a global focus in in order, without losing sight of our own backyards. (Goodman, 1995; Hurtado, 2005; Kinchloe, 2004). There is consensus that dialogue, conversation, social relationships, and engagement as social change agents are key to successful social justice education, and that transformation can be expected as lived experiences connect with new theoretical constructs (Baker, Jensen, & Kolb, 2002; Guthrie & McCracken, 2010; Ibrahim, 2010; Pease & Fook, 1999; Taylor & Cranton, 2012). It is this area of transformation that is the focus of this study. Two research questions are posed. First, can students, enrolled in a course on social justice, create a symbol to support their own transformation? Second, can the created symbol serve to maintain the new lens through which they have learned to see their own lived experiences? To properly understand issues of social justice, Adams et al. (2013) and Ortiz and Jani (2010) identify that intersecting social identities (ability, age, class, ethnicity, gender identity, race, religion/spiritual tradition, sexual orientation) and their degrees of power and privilege, or powerlessness and marginalization, are important constructs in teaching about human diversity and social justice. These variables, “…contribute substantially to social life and shape identity, behavior, opportunities, and access to resources within and between societies” (Ortiz & Jani, 2010, p. 187). The literature emphasizes that educators need to create environments and facilitate experiences that promote a transformative process. Guthrie and McCracken (2010) posit, Pedagogical objectives are achieved through intentionally structured curricula that promote the construction of knowledge and the development of reflective practice through collaborative inquiry and that incorporate methods such as targeted readings, interactive and goal-directed discussions, team and small group activities, reflective writing and presentations. (p. 81) Mezirow (2012) offers that,

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Transformation theory’s focus is on how we learn to negotiate and act on our own purposes, values, feelings and meanings rather than those we have uncritically assimilated from others-to gain greater control over our lives as socially responsible, clear-thinking decision makers. (p. 76) Pease and Fook, (1999) remind us that transformation is possible through dialogue and social relationships. Ibrahim (2010) emphasizes that “It is imperative that instructional strategies connect with lived experiences…” (p. 272). At issue is the importance of the transformative process that occurs as students process new information against the backdrop of their own lived experiences. Mezirow (2012) suggests that, “transformative learning has both individual and social dimensions and implications” (p. 77). Singh (2010) is compelling in her stance that students must move past “understanding” so that they can engage as advocates and change agents. It is this juxtaposition that is highlighted by the creative assignment discussed in this paper. Creativity is the process of making something new, the process of “bringing something new into being” (May, 1975. p. 39). Creativity, in the form of the arts, offers a way to find meaning, a way to “mark” a change or a transformation. As a demarcation, the created thing reminds us that there was a time before…now there exists this (sculpture, poem, quilt, business, community garden, play-ground for special needs children, whatever it might be). In a real way, the now-existent entity can be experienced as a representation of the change that has occurred in the mind’s eye of the creator. Something happened to inspire or motivate its creation. Was it a new experience, a new thought, a new perspective on what had been quite familiar? Any could be the case. And the result is something meaningful. “The arts not only transfigure the ordinary, but they also are integrative, uniting our intellects with our bodies, emotions, desires, and will” (Paintner, 2004, p. 4). Furthermore, Paintner (2004) holds that creativity is informed by imagination, and that our imaginations “give us the power to remember the past, to shape our desires, and to project possibilities for the future” (p. 3).

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Encounters in Human Diversity The authors teach in a CSWE-accredited, Baccalaureate and MSW program at a publicly funded, state university located in the northeast of the United States. The university is in a largely suburban setting; the student body comprises approximately 8,700 undergraduates and 1,000 graduate students. In recent years, approximately 100 BSW students have graduated from the social work program each spring. A master of social work (MSW) program began seven years ago and has been graduating approximately 30 students each spring semester. A doctor of social work (DSW) has just started in fall of 2015 as a joint program with another university in our state system. Combined, the universities have accepted a beginning cohort of 16 DSW students. The university is foundationally liberal arts and, according to its mission statement, supports innovative learning both inside and outside of the classroom. Undergraduate students are required to take a course in diversity (which is awarded the “D” label) and a course in perspectives (which is awarded the “P” label) to complete university requirements for graduation. The School of Social Work offers a course which meets both the diversity “D” and perspectives “P” requirements. The course is Encounters in Human Diversity and it focuses attention to social justice issues. While the course is housed within the School of Social Work, because it is approved to meet the diversity “D” and perspectives “P” requirements of the University, it is open to students from all academic disciplines. It is a popular course and it is offered year-round, with three sections of 40 students each in the fall, again in the spring (three sections of 40 students each) and offering one section in the summer and one section in the winter.

Organization of the class. Each section is organized to create communities of learning. The class sections are mid-sized, with an almost uniform 40 students per section. The class meets face to face, either three times a week for 50 minutes each, or twice a week for 75 minutes each, or once a week for 150 minutes. Each structure offers points of strength. The one offers frequency of sessions to foster community. Another, meeting just weekly but for 150 minutes, offers longer duration with increased intensity. The remaining structure falls somewhere in the middle, meeting twice a week for just over an hour each session. In all cases, 40 students are too many to create a small group experience as a whole class. So, students are randomly assigned to

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small groups, eight in total, each with an ism to process and attempt to dismantle. These isms include racism, religious oppression, anti-Semitism, sexism, heterosexism, classism, ageism, and ableism. While these isms are the focus of the group for one assignment, each group talks about each ism as a unit of study as we progress through the semester. The groups consist of up to five members, which proved to be optimal for building community and cohesion through dialogue. Within these groups, students accomplish several learning activities.

Learning activities/assignments. Assignments have been selected to match both what the literature suggests as necessary and the learning needs of our students. Each assignment is designed to facilitate thoughtful consideration of the ideas proffered by the text and by the students themselves, as they grapple with new information and new lenses through which to view the world and themselves. Assignments consist of 12 weekly reflective journals, seven Living Room Conversations and seven related quizzes with a group presentation at the semester’s end. Additionally students participate in three university sanctioned events having a social justice theme, complete an oral history interview and paper, and a culminating creative project. Described below are the assignments in more detail, followed by Table 1, which provides a link between the pedagogical strategies identified in the literature and the actual class assignments. First, students are required for the first 12 weeks of the course to complete reflective journals that demonstrate the student’s thorough reading of the assigned chapters and outside readings. Students are to remark on information that was new or troubling to them with references to their own lived-experiences. Finally, any ideas or strategies for making changes are welcome. Students submit these 1-2 page journals to an on-line drop-box. The instructor reads and responds to each journal within the week, thereby establishing the beginnings of dialogue. Students often respond again to the instructor and the conversation continues. Second, students are to attend three university sanctioned events with a theme on social justice. They write about the event in a similar format to the reflective journal. At first students report being guarded and unsure about trying something new. But as the semester continues, they report being more comfortable with their own discomfort and branch out further with each event.

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Third, students are randomly assigned to small groups of five students. These small groups accomplish several things. During class exercises, these groups work together, fostering the building of relationships over the course of the semester. Additionally, these are the groups that participate in Living Room Conversations, and give poster presentations toward the end of the semester highlighting the content and process of those Living Room Conversations. Fourth, the Living Room Conversations are the forum through which students engage in civil discourse. Each small group was randomly assigned a particular oppression (an ism) to address. The group was then tasked to create strategies whereby that form of oppression may be dismantled. Students log onto the Living Room Conversations website and read the guidelines. These guidelines include being authentic, searching for common ground, staying on-task, taking responsibility for keeping the conversations flowing, showing respect, being curious and open to learning (Living Room Conversations, n.d.) The small groups participate in seven Living Room Conversations during the course of the semester. These are held during class time but may occur in a different room (library, empty classroom). Fifth, to ensure integrity, students take a brief on-line “quiz” after each Conversation, describing what was accomplished, and if the tenor of the Conversation was in line with the guidelines. The purpose of the Living Room Conversations is to talk about subjects which may be controversial or difficult, with a goal of furthering the cause of social justice. This addresses several pedagogical strategies, including engaging as social change agents. Sixth, during the 14th week of class, the various small groups give poster presentations of both the strategies for social justice that were developed during their seven Living Room Conversations, as well as the experiential process. Seventh, students must interview someone they do not know, someone not affiliated with the University. The theme of the interview is how social identities affect and influence life chances, life choices and the reality of privilege and lack of privilege in society. At first, students express concern that no one will want to discuss such personal topics, but are uniformly surprised at how eager most people are to tell their own stories.

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Methodology

This is a study of transformation. The transformation of students’ attitudes and ideas toward those of social justice in the context of social work ethics and values is the end goal of this project and this course. The challenge to instructors of this course, and any social work course in general, is how to measure this type of qualitative transformation. The creative project was selected as the culminating assignment of the Encounters in Human Diversity which served as a method of measuring the transformation which occurred in the context of this course. This project reflected student transformation by attributing individual meaning to this change from passive-learner/observer to active-learner/participant/advocate/change-agent. In essence, the creative project serves to reflect and symbolize the student’s transformation. For the creative project, students choose a particular social identity of their own (race, gender, class, ability, age, religion, etc.) which has come into clearer focus during the course of study. Students then create something which symbolizes their new awareness and their commitment to justice and advocacy. The project must be original work and should highlight a new lens through which the students see and experience themselves as a result of the class. It might be a painting, drawing, poem, song, dance, pottery, etc. (It is not someone else’s lyrics, something found on you-tube, or a collage of magazine pictures.) The transformation of the student is measured in several ways. First, the selection of the object, idea, or issue by the student highlights the types of changes that they have identified as significant in the context of this course. This provides rich data for exploring the areas in which students have personally identified change. Secondly, the ways in which the students choose to represent their ideas creatively, reveals their new personal construction of these ideas. Using various art mediums allows for deeper student expression of their ideas and feelings. Finally, students used words and thoughts to describe their project. Through this process, they have represented their transformation using specific language and feeling to share these ideas with the classmates through presentation. The data from these assignments were collected in various ways. First, using a specific rubric, the quality and thoroughness of each project was assessed and documented. This revealed the effort and quality of the projects. Of the projects (N=125) assessed in a semester,

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107 (85%) of these projects were considered to be well-done and of high quality. Embedded in this rubric is an assessment for change over the course of the semester for each individual student and as a result of the content and experiential assignments of this course. Students must describe clearly what their attitudes toward issues of social justice were, before enrolling in this class. They were encouraged to use the Cycle of Liberation Chart found in their text book using terms/concepts such as “waking up, reaching out, building community, and creating change” (Adams et al., 2013, p. 620). Next, qualitative data was elicited from the types of topics selected for the individual projects and through the ways in which students described their own projects. This data provided insight into the changes that had occurred for individual students during the course. Finally, students self-reported specific changes in their own personal ideas and shared specificity in terms of particular insight gleaned through the course and specifically this project. Data were gathered through the collection of creative projects, which included the students’ own notes and interpretation of transformative meaning. Data were collected through comments made about the presentations. These data were compiled and coded by the instructors of the course using a constant comparative method and open coding. Next, the instructors used thematic analysis to examine the data and expose the themes therein. Multiple instructors allowed for additional rigor through inter rater reliability.

Results/Findings

Each semester, during the final 150 minutes (either the last session of the 3 hour class, or the last 2 classes of the twice-a-week sections, or the last three sessions of the 50 minute sections) students present their creative project to the class. They provide a brief discussion on the symbolism involved. As students presented their creative projects, they explained what kind of changes and transformation had occurred and how their project symbolized the change that had taken place. Examples of student statements which indicated transformation include: “I never saw myself as being powerful. I now see that I am part of the dominant group, and I can choose to use my privilege for the good of all.”

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“I always knew, as an African American woman, that my groups were discriminated against. But I didn’t realize that other groups had it bad, too. I just never thought past my own back yard. I ‘woke up’ in this class and I need to stay awake and be an ally to others.”

“I knew there was inequality in the world, but it seemed like it didn’t bother me, didn’t affect me. But when we did those time lines of events of oppression, I knew I needed to get involved. So this is me with my head in the sand before the class. And this is me, as an activist. I know it is hard but I also learned, or realized, that I can do hard things, like finishing college. What I can’t do is sit around and pretend. I am done with that.”

“I always wanted to be a princess, to be sort of taken care of. I liked how that was. Our unit on ableism and the systematic oppression of people with disabilities made me decide to get involved and quit playing around. I need to make a difference. That will mean finding others who want to make a change, doing like we talked about in class, expanding our community”

Students have allowed the authors to take photos of their work to be used in workshops or for publication. Sometimes, students have made duplicate projects, and gifted the instructor with one of the copies. Examples of the projects are in figures 1-7 at the end of the document. Of note is the fact that these were not created by fine arts majors. The authors’ hoped that the creative project assignment would result in a token that would serve as a pocket-symbol of sorts. The expectation was that the symbol might be something like a paperweight that might serve as a marker. For many this was true. But for many more, the resultant symbol was powerful enough to give us pause.

Discussion

This entire course offers a variety of opportunities for students to grow in their awareness of self and others in our society, and world. Students’ understandings of power and social

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identity are challenged through the various component of this course. Students have a strengthened understanding of the power of socialization and of the necessity to wake-up (Adams et al., 2013) and strategies to do just that. Through individual journals, small groups, structured civil discourse, and projects, the beginnings of strong interpersonal relationships are forged. Within the circle of this community, the ideals of social justice are promoted and explored. This sense of community is quite important. Baker et al. (2002) offer, “When individuals are psychologically safe and secure, they are more likely to be asking questions, to be taking risks, and to be open to differences” (p. 2). Students, anchored in a safe classroom community, are free to critically examine their own lived experiences and perspectives, even as they engage authentically with others to find common ground. Barriers to social justice, at the individual and institutional levels, are identified and strategies are developed to bring real and lasting change. The creative assignment embedded in this course provided an innovative modality to help students process the information and transformative change associated with this course. Because creativity helps elicit the insight and provides a tangible walk to mark out a before/after time, the arts offer an integrative modality to mark this transformation (May, 1975; Paintner, 2004). Evident in the data associated with this project and this course, change did occur for students in terms of their insights and constructions of social justice. The differences noted include the ways in which students view the dynamics of oppression and their personal power, the need for community, and advocacy. Additionally, students reported increased confidence as a result of both the living room conversation and the oral history paper.

Implications for Practice

Without doubt, the establishment of a safe community is an important first step in teaching courses that challenge the status quo and hope to promote civic engagement. The authors find that modeling the Living room Conversation guidelines, within the process of weekin and week-out in class discussions as well as on-line assignment feedback is imperative. During discussions in response to readings, lecture, or experiential activities, when there was divergence views, the instructors validated the strengths in each view and moved toward the

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acknowledgement of common ground. Establishing this search for common ground as an intentional pattern of the discussions modeled how this as a valued skill. As instructors, we also modeled authenticity with appropriate self-disclosure. Staying on target comes easy to us, in theory, as professional educators. We have lesson plans, and must regularly meet academic deadlines. In the progression of courses like this one, however, freedom to follow what seems, at first blush, to be tangential must be allowed as this is often where the next “awakening” occurs. Maintaining the balance of staying on track, yet allowing connections to be made as students “try on” and explore perspectives that may be different from their own is the challenge we face.

Implications for Research

While the assignments in this course are separate, they are interwoven and build upon each other as they thicken the students’ exposure to and engagement with the material. One task for us, as we continue to develop this course, will be to tease out, and perhaps place in a hierarchy, the effectiveness of each activity or assignment. Yet it is a possibility that the activities work best in conjunction with each other, and none would as effective as stand-alone assignments. Further exploration in terms of pedagogical evaluation is in order. Additionally, it will be important to develop a design to identify and measure community involvement in promoting social justice and civic engagement, perhaps even after graduation. This may be a lofty endeavor, but it is not out of the realm of possibility. Our School of Social Work regularly follows and assesses the continued application of practice competencies of our alum at regular intervals. The challenge for this course is that students enrolled are from many academic disciplines. So a design for follow-up would need to be created from scratch.

Author Biographies

Dr. Joyous Bethel is an Assistant Professor at Millersville University, teaching in both the graduate and undergraduate social work programs. Before coming to the Academy, she worked in Hospice as a social worker and bereavement clinician. She earned her BA (in social work) and MSW from The University of Oklahoma, and her Ph.D., in social work, from Barry

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University in 1997. Her research interests are complicated mourning, trauma, social justice, creativity and spirituality, and diversity. Dr. Leonora Foels is an Associate Professor at Millersville University, (MU) in the School of Social Work where she has taught since 2009. Previously, she was Visiting Faculty and Lecturer at the University of Tennessee, College of Social Work, Nashville Campus and an Adjunct Professor at Barry University School of Social Work. Dr. Foels teaches a variety of practice and elective courses at both the undergraduate and graduate levels. Jennifer M. Frank is an instructor at the Millersville University School of Social Work and ABD at the Bryn Mawr Graduate School of Social Work and Social Research. She has several current research projects which are exploring perspectives on poverty, social and economic distance, and the development of helping systems. Jennifer is a licensed social work and has practice experience working with individuals and families experiencing homelessness and poverty. Dr. Kathleen (Kat) Walsh, Associate Professor, is the coordinator of the Millersville University Baccalaureate Social Work Program. Dr. Walsh is a licensed clinical social worker in the Commonwealth of Pennsylvania (LCSW) and the State of Maryland (LCSW-C). She holds a PhD. in social work and a Masters of Social Work (MSW) from the University of Maryland, Baltimore. Her Bachelor of Arts in Social Work along with a Certificate in Public Administration is from the University of Maryland, Baltimore County (UMBC). Dr. Karen Rice earned her MSW from Temple University in 2000 and her Ph.D. in 2011 from the University of Maryland in Baltimore. She serves as the Department Chair and DSW Co-Director at Millersville University of PA, School of Social Work. She teaches research, statistics, diversity, global social work, and child welfare to undergraduate and graduate students. Dr. Rice's ongoing research and practice center on the promotion of social and economic justice, particularly with youth and those who experienced trauma, domestically and internationally.

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References

Adams, M., Blumenfeld, W. J. , Casteneda, C. R., Hackman, H. W., Peters, M. L. , & Zuniga, X. (Eds.) (2013). Readings for diversity and social justice (3rd ed.). New York, NY: Routledge. Baker, A., Jensen, P. & Kolb, D. (2002). Conversational learning: An experiential approach to knowledge creation. Westport, CN: Quorum Books. De Anda, D. (2007). Reflections on introducing students to multicultural populations and diversity content. Journal of Ethnic & Cultural Diversity in Social Work (The Haworth Press), 16, 143-158. Dissanayake, E. (1995). Conversations before the end of time. In E. Paintner, Spirituality in Higher Education Newsletter, 3, 1-6. Goodman, D. (1995). Difficult dialogues: Enhancing discussions about diversity. College Teaching, 4, 47–52. Guthrie, K., & McCracken, H. (2010). Teaching and learning social justice through online service-learning courses. International Review of Research in Open and Distance Learning, 11, 78-94. Hurtado, S. (2005). The next generation of diversity and intergroup relations research. Journal of Social Issues, 61, 595–610. Ibrahim, F. (2010). Social justice and cultural responsiveness: Innovative teaching strategies for group work. The Journal for Specialists in Group Work, 35, 271-280. Kincheloe, J. L. (2004). Critical pedagogy primer. New York, NY: Peter Lang. May, R. (1975). The courage to create. New York, NY: W. W. Norton & Co. Mezirow, J. (2012). Learning to think like an adult: Core concepts of transformation theory. In E. Taylor, & P. Cranton (Eds.) The handbook of transformative learning: Theory, research, and practice (pp.73-95). San Francisco, CA: Jossey-Bass. Ortiz, L., & Hani, J. (2010) Critical Race Theory: A transformational model for teaching diversity. Journal of Social Work Education, 46, 175-193. Paintner, C. (2007). The relationship between spirituality and artistic expression: Cultivating the capacity for imagining. Spirituality in Higher Education Newsletter, 3, 1-6.

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Pease, B., & Fook, J. (1999). Postmodern critical theory and emancipatory social work practice. In B. Pease & J. Fook (Eds.), Transforming social work practice: Postmodern critical perspectives (pp. 1-22). New York, NY: Routledge. Singh, A. (2010) Teaching social justice advocacy: Using the metaphor of a quilt. Psychology of Women Quarterly, 34, 550-557. Taylor, E., & Cranton, P. (Eds.), (2012). The handbook of transformational learning: Theory, research, and practice. San Francisco, CA: Jossey-Bass.

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Tables and Figures Table 1 Strategic Learning Activity and Linked Assignments Learning Activity Dialogue

Building social relationships

Connecting lived experiences with theoretical constructs

Assignment            

Engaging as social change agents

  



12 weekly reflective journals, with instructor responses Weekly exercises and activities in assigned small groups 7 Living room conversations Oral history paper With instructor via journals With classmates via small groups, Living Room Conversations Conducting the oral history paper Participating in 3 social justice events Reading the Voices section of the text Writing about own experiences in journals in connection to ideas from the text Hearing about the lived-experiences of classmates in small group and larger class discussions Further sharing in Living Room Conversations Participating in 3 social justice events Participating in Living Room Conversations with a focus on finding common ground as a means to dismantle oppressive practices at the individual and institutional levels Participating in 3 social justice events

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Figure 1. Grandness. All of a sudden, I am not small anymore. The things I have been told, all my life, don’t matter “You can’t do this, you’re a woman”, “You can’t do this, you aren’t smart enough”, “You can’t do this, you aren’t pretty enough”. Now I see that the world can be open to me…the sky is the limit. And I can help others see this, too.”

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Figure 2. Blinders Off Depression, as my dis-ability, blinded me. It blocked any possibility of really experiencing life. I thought I was the only one. When I could call it what is was, and join with others like me, I found the courage to take my medicine. And it took the “blinders” off. And now, the world is “in color” I am not limited by my dis-ability. Now I have ABILITY.

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Figure 3. Heaviness Lifted The weight of the world, of many worlds, pressed in around me…and not just me, but others like me, and those who came before. It was real. But now, somehow knowing that it wasn’t me, not something I had done, makes me determined. I will not sit and let it happen. I will gain strength, join with others, and rise.

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Figure 4. Changing Seasons; Changing Ideas This class has been like seasons. I came in sort of like the school year: it was the end of summer and I had all these great ideas, lush, beautiful, vibrant. Ideas I was proud of. But, as I learned about the real world, about the inequalities, I began to challenge some things I had always held to be true…and they were not true…and they began to fall away from me, like in autumn. Then, I was like in winter, with no leaves, sort of lost and questioning everything, confused and just out there. But I began to determine what was important, for me. I knew that I believed in social justice, that I believed in equality, that I believed in human rights. Period. And so I began to thaw…and little by little, I embraced new, baby ideas, and it was like spring, new baby leaves. Now, I am moving toward summer; but with leaves and ideas that are mine, chosen because I will no longer be fooled. I believe in this country and I believe in justice, justice for all.

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Figure 5. Courage I have a quiet courage. Now I know, I can keep on trying.

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Figure 6. Standing Firm I am like a sunflower. When they are young, sunflowers follow the sun. They draw energy and strength to grow and reach their full potential; blossoming from the light and warmth the sun provides. As they mature, they learn which direction to face I order to gain the most light possible. Then, they stand firm, permanently facing in the direction that offers the greatest opportunity for growth. There, they receive the most strength and light. Mature, and in the light, they share the blessings of their growth and maturity with all who venture near.

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Figure 7. Choice of Words All my life people have used words to define me. The dominant group uses words to define women, to define all targeted groups. The words don’t just “define”. They limit. They keep us down, in our place, where we belong, as “they” see it, as it suits “them”. Well, I am going to use words to re-define myself, to re-define my life. Words like: honest, sassy, ambitious, stable, and strong. And all these words make me who I choose to be, not who someone tells me I am.

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The Effect of Formal Clinical Training On Stigma Surrounding Transgender Individuals Kristen H. Cole University of Indianapolis Mixalis Poulakis University of Indianapolis Lori Nabors University of Indianapolis Nidaa F. Kazi University of Indianapolis Kai Shin (Josephine) Chu University of Indianapolis Emma Carter University of Indianapolis Renita Sengupta University of Indianapolis

Abstract This study is an exploratory analysis of the current state of clinical psychology doctoral training on transgender issues. It explores the impact that formal clinical education and interpersonal interactions has on trainees’ perceptions of transgender individuals. Consensual Qualitative Research methodology was used to analyze data collected from 13 third to fifth-year clinical psychology doctoral students. Consensual Qualitative Research methodology commonly uses small sample sizes ranging from 12 to 15 participants to gain a deeper understanding of the participants’ idiosyncratic experiences in qualitative research, rather than collecting less detailed information from a larger sample size (Hill, 2012). A semi-structured interview format modified from the “Attitudes Toward Lesbians and Gay Men Scale” was utilized, as well as two paper-

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and-pencil measures. The first measure was modified from the “Index of Homophobia” and adapted to measure “transphobia.” The results from this measure showed that some doctoral candidates were ambivalent toward or display stigma surrounding the transgender population. Furthermore, the scales indicated that graduate psychology students who had undergone more clinical training on transgender issues showed lower levels of stigma. According to the interviews, the majority of graduate psychology students believed they needed more clinical training on transgender issues. It is hoped that the results from this study will inform current psychologists about the importance of doctoral programs including education on transgender issues as part of their curriculum. Moreover, this study aspires to serve as a catalyst for future studies exploring how to reduce transphobia and increase the efficacy of mental health treatment for this population.

Keywords: Transgender, Stigma, Discrimination, Clinical Training

Introduction

Being a transgender individual is fraught with hardships. These individuals often lose their families, friends, jobs, and the hope of living a life free from stigma and discrimination due to being misunderstood (Hopwood, 2010; Hubschman, 1999). According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) a person with Gender Dysphoria is an individual with “a marked incongruence between one’s experienced/expressed gender and assigned gender” (American Psychiatric Association [APA], 2013, p. 452). The International Statistical Classification of Diseases and Health Related Problems (ICD-10) explains that individuals with Gender Dysphoria often wish to alter their physical characteristics in order to make them congruent with their preferred sex using Gender Confirmation Surgery (GCS) and/or hormone therapy (WHO, 2010). Finally, one of the most well-acknowledged and reputable organizations established to support transgender individuals, the World Professional Association for Transgender Health (WPATH), defines Gender Dysphoria as a dissatisfaction with one’s sex, as defined at birth, and one’s gender role, as defined by social conventions (Coleman et al., 2011).

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The existing research on transgender individuals suggests that transgender individuals face an inordinate amount of mistreatment on a regular basis from a variety of populations, including mental health professionals, medical staff, and law enforcement officers (Eliason & Hughes, 2004; Namaste, 2000). It is profoundly arduous for these individuals to undergo daily trials while also bearing the weight of stigma, prejudice, and discrimination from professionals who claim to be available for aid. If stigma were reduced, beginning with young, up and coming mental health professionals, these individuals would be able to receive the treatment needed without having to face added prejudice and discrimination.

Literature Review

The current literature on transgender individuals, which is primarily composed of biographies of people who identify as transgender as well as their families’ perceptions of the transition, is largely outdated. Though there is an abundance of research looking at stigma surrounding individuals who identify as gay, lesbian, or bisexual, there is a paucity of literature on reducing stigma surrounding individuals who identify specifically as transgender. However, according to the literature that is available, transgender individuals face numerous and significant obstacles with regard to their daily lives and their experiences in mental health treatment. A review of the literature on stigma and therapy issues facing transgender individuals is presented, followed by an overview of the literature surrounding the role of education and training in the reduction of transphobia.

Stigma Toward Transgender Individuals

Stigma is believed to be a personal challenge to an individual’s humanity (Heatherton, Kleck, Hebl, & Hull, 2000). Gordon Allport (1954) claimed that oppression of an individual can completely break down the integrity of the ego in the victim, thus destroying pride and selfesteem and leaving in its place a broken self-image. Stigma toward transgender individuals is based upon the individual’s nonconforming gender identity. This stigma exists due to hetero-

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normative perceptions indicating that people who express any gender variance are “depraved,” “mentally ill,” and “inferior” (King, Winter, & Webster, 2009). Due to the high rates of stigma and prejudice aimed toward transgender individuals, the term transprejudice was coined by Mark King to describe this phenomenon. This term refers to heterosexual individuals’ devaluation of transgender individuals, as well as the stereotyping, pathologization, stigmatization, and delegitimization of transgender people (King et al., 2009). It is believed that high levels of transprejudice provide a psychological and social foundation for dehumanizing transgender individuals, socially distancing them, discriminating against them, and legally delegitimizing them in the public realm (King et al., 2009). Additionally, the term transphobia was coined to illustrate the bias against transgender individuals by United States (U.S.) activists in the late 1990s, which led to the stigma and discrimination that transgender individuals face on a daily basis (Raj, 2002). The severity of the stigma aimed toward transgender individuals disrupts their mental and emotional well-being, often causing them to experience increasingly high levels of abuse, sexual assault, and homicide (Mizock & Lewis, 2008; Namaste, 2000; Pardo, 2008; Sullivan, 2003).

Therapy Issues

Historically, research, assessment, and treatment for gender variant individuals have pathologized the Transgender population (Raj, 2002). It has been reported that 71% of counselors have little to no training on LGBTQ issues and treatment (Eliason, 2004; Sullivan, 2003). In a survey of counselors’ attitudes toward LGBTQ individuals, the greatest amount of ambivalence or negativity was aimed toward transgender individuals, with 56% of the surveyed counselors indicating that they had some negative bias toward this population (Sullivan, 2003). Clinicians with such strong biases are considered to have transphobia and tend to pathologize gender variant clients and label them with several diagnoses, often including personality disorders (Raj, 2002). Therapists’ perception of their clients can significantly impact the efficacy of therapy. If a therapist holds biases against transgender clients, it may cause therapy to be ineffective and possibly even harmful (Sullivan, 2003). Leaders in the field of research on multicultural

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counseling specializing in LGBTQ issues have emphasized the importance of specialized training and an attainment of in-depth knowledge of LGBTQ issues prior to working with this population, to ensure competent services (American Psychological Association, 2011). Yutrzenka (1995) further concluded that specialized training results in increased sensitivity which provides better outcomes for clients. Unfortunately, recent research examining therapist training in specialized issues has suggested that the majority of practicing counselors lack education and knowledge about important issues specific to transgender individuals, which may cause problems in therapy (Bess & Stabb, 2009). Therapy is an integral part of many transgender individuals’ ability to transition via hormones or Gender Confirmation Surgery (GCS) as defined by The Standards of Care (Bess & Stabb, 2009; Coleman et al., 2011; Eliason & Hughes, 2004; Raj, 2002; Sullivan, 2003). The Standards of Care were drafted by Harry Benjamin in 1979 as clinical guidelines intended to articulate the international organization’s professional consensus concerning psychological, psychiatric, medical, and surgical treatment of Gender Dysphoria (Coleman et al., 2011). These guidelines require that anyone who is attempting to undergo GCS or hormone therapy must be seen by at least two mental health professionals, one of whom must be a psychiatrist or a clinical psychologist. This standard is set in place in order to prevent individuals from regretting the transitioning process, as the effects of GCS and some components of hormone therapy are irreversible (Bess & Stabb, 2009; Eliason & Hughes, 2004; Raj, 2002; Sullivan, 2003). In addition to the stipulation that they be seen by a mental health professional for hormone therapy and GCS, transgender individuals often seek out treatment to deal with the stress of being a minority, managing the difficulty of conflicting identities (such as identifying as both Christian and transgender), subsequent self-exploration, drug and/or alcohol abuse, loss of family and community support, and non-acceptance of self, including internalized transphobia (Eliason & Hughes, 2004). Many individuals who identify as transgender also suffer from depression due to their hardships and have a significantly higher risk for suicide (APA, 2011). Thus, it is critical that the therapist entrusted with the well-being of a gender variant client be unbiased, competent, and knowledgeable in order to provide the most efficacious treatment and the best quality of care. However, without providing therapists-in-training the education

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necessary to prepare them to work with clients who identify as transgender, they will likely be ill-equipped to provide the essential care that these individuals need.

Education and Stigma Reduction

Stigma surrounding gender variant individuals causes considerable angst in the form of fear of abuse, isolation, and depression. Studies have shown that there is a lack of emphasis on LGBTQ issues in professional psychology programs, which leads to practitioners experiencing a lack of knowledge and insensitivity toward LGBTQ lifestyles and identity development (Bess & Stabb, 2009; Buhrke, 1989; Whitman, 1995). Further, empirical studies have found that most graduate level students feel that their programs do not adequately prepare them to counsel LGBTQ individuals and that students do not feel competent to provide therapy to this population (Phillips & Fischer, 1998). If a graduate program does include education on gender variant clients, it is generally only theoretical or focuses on the LGBTQ group as a whole and does not focus specifically on transgender clients. The rationale for the lack of education about this population is their small size. Graduate programs claim that they cannot justify adding topics related to this population to the curriculum since novice practitioners may not actually encounter a gender variant individual in practice. However, this may contribute to a framework of future practitioners who lack the required knowledge to work with transgender individuals, thus exacerbating the likelihood of transphobia and transprejudice in their clinical work. (Bess & Stabb, 2009). Empirical evidence has indicated that as a result of the paucity of training on LGBTQ issues in professional psychology programs, mental health professionals continue to exhibit heterosexist biases, inaccurate assumptions about clients’ sexual orientation and lifestyle, lack of knowledge about LGBTQ difficulties such as the effects of stigma, oppression, and discrimination, as well as continued pathologizing of LGBTQ clients (Phillips & Fischer, 1998). Studies show that more mental health practitioners encounter individuals in the LGBTQ population than they realize (Phillips & Fischer, 1998). Even when practitioners are aware that their clients are gay, bisexual, or transgender, they are often insensitive, denigrating, pathologizing, and discriminatory (Biaggio, Orrchard, Larson, Petrino, & Mihara, 2003). Lack of education can breed confusion, a lack of affirmation, and stigmatized views which result in

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transphobia. Such views may even sometimes result in violence toward these individuals from people in various professions including law enforcement officers (Ryan, 2000). Experts in the field claim that raising student awareness about the impact of heterosexism, increasing in-depth training regarding issues pertaining to the LGBTQ population, providing supervision from clinicians trained in this area, and helping students confront their own heterosexist biases, sexist views, transphobia, and homophobia are the key components of reducing stigma, prejudice, and discrimination in upcoming practitioners in the field of mental health (Biaggio et al., 2003; Phillips & Fischer, 1998; Whitman, 1995).

Formal Clinical Training

Although numerous studies have been conducted examining the stigma surrounding those who identify as gay, lesbian, or bisexual, there is an absence of studies conducted in the U.S. directly examining the impact of formal clinical training on stigma surrounding transgender individuals on mental health practitioners. However, several studies have been conducted in the U.S. that examined strategies for reducing stigma in general (Corrigan & Watson, 2002; Penn & Couture, 2002). Three approaches have been identified by Corrigan and Watson (2002) for reducing stigma: protest, education, and contact. Protesting negative attitudes about mental illness attempts to diminish stigma but fails to promote positive attitudes towards stigmatized populations (Corrigan & Watson, 2002). Education promotes more positive attitudes and helps people better understand stigmatized groups, thereby allowing more informed decisions to be made. Evidence suggests that individuals who are more informed about the mentally ill are less stigmatizing of them (Penn & Couture, 2002). However, stigma appears to be further diminished when members of the general public meet with people who are mentally ill (Corrigan & Watson, 2002; Penn & Couture, 2002). Contact with stigmatized group members appears to result in a change from out-group member classification to in-group classification, i.e. from “them” to “us” (Penn & Couture, 2002). Additionally, prolonged interpersonal contact with stigmatized individuals may disprove myths that ultimately lead to stigmatization (Penn & Couture, 2002). Studies focusing exclusively on the impact of psycho-education on transgender individuals for the general public seem to have been only conducted in foreign countries. A

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study completed in Norway examined the effects of educating a transgender child’s family, school system, and community on their attitudes toward the child (Benestad, 2009). The model used by the researcher was education through interpersonal interaction. The researcher used the motto “There are no grounds to see these children as disturbed” (Benestad, 2009, p. 210). She indicated that the therapeutic aim must be to treat the parents, peers, school and health professionals, and others that might be of significance by teaching “transpositivity,” where everyone accepts all genders with a positive attitude. The researcher based her method on the theory that in human relations each social system influences the other. Thus, as each system is educated and influences the other, the transgender children will gain more acceptance and social support (Benestad, 2009). This method resulted in reduced tension in the community. Family members and teachers were more supportive and children became more accepting of their transgender peers (Benestad, 2009). The educational seminar appeared to reduce the stigma that the transgender children initially faced or feared facing, in the family, school, and larger community. The transgender children also appeared to have improved functioning at home, in school, and in social situations. They appeared to have an increase in self-esteem and seemed more at ease, with considerably fewer feelings of shame and guilt (Benestad, 2009).

Overview and Hypothesis

This study aimed to explore the impact of formal clinical education and interpersonal interactions on clinical psychology doctoral trainees’ perceptions of transgender individuals. The following hypotheses were proposed: (a) If graduate level psychology students have received formal clinical training on the transgender population, then their level of stigma will be low according to the Index of Transphobia Scale and self-report; and (b) If graduate level psychology students have had positive experiences interacting with transgender individuals, then their level of stigma will be low according to the Index of Transphobia Scale and self-report.

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Methodology

This study employed the same format as the limited studies conducted on attitudes toward transgender individuals, using semi-structured interviews and paper-pencil questionnaires. The data was analyzed using the Consensual Qualitative Research (CQR) methodology (Hill, 2012).

Procedures

Thirteen third to fifth-year doctoral psychology students from a small private university in the Midwest were recruited via e-mail and flyers. Participants were offered an incentive of being entered into a drawing for one of two $50 gift cards to Target. When using CQR, small sample sizes consisting anywhere from 12 to 15 participants are considered the optimal range so that researchers can gain a deeper understanding of the participantsâ&#x20AC;&#x2122; idiosyncratic experiences, rather than collecting less detailed information from a larger sample size (Hill, 2012). Recruitment involved sending mass e-mails to all graduate psychology students, outlining the purpose and procedures of the study, as well as the incentives offered. Flyers with the same information were also posted around the primary graduate psychology student facilities. The interviews were conducted in private rooms equipped with audio recorders, designated for research purposes at the university which participants attended. All participants were assured that all identifying information would be kept completely confidential. Thus, all information was coded with letter/number combinations which were used in the manuscript to refer to information given by each participant. The participants were given a paper-and-pencil demographic questionnaire and the Index of Transphobia Scale (modified from the Index of Homophobia), used to measure veracity, which they completed and sealed in an envelope in order to preserve privacy. The interviewer then returned to complete the semi-structured face-toface interview, which was developed based on the widely used questionnaire, Attitudes Toward Lesbians and Gay Scale (ATLG) (Herek, 1984).

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Consensual Qualitative Research (CQR) Method

The data obtained from the surveys and the semi-structured interview was analyzed utilizing the CQR method (Hill, 2012). During CQR analysis a team of researchers reviews all the research data. The team reviewing this study consisted of eight researchers who were trained in CQR methodology. The interviews were transcribed and then reviewed by the research team until a consensus was reached on common themes and domains across the transcripts. The themes and domains were then evaluated by the auditors. The data was then broken down into categories, which represented themes across participants. These categories were labeled general, typical, or variant depending upon the number of cases it applied to. A category labeled general applied to all or all but one case. A typical category applied to more than half of the cases. Finally, the category labeled variant applied to at least two cases but no more than half of them. Table I provides a list of the domains and categories that were developed in this study.

Findings

The following section will report the participants’ scores on the Index of Transphobia Scale which was completed by participants throughout the course of the study. Additionally, pertinent categories and themes across participants’ interview data will be identified. Participants’ perspectives on the extent to which their doctoral training focused on topics pertaining to the transgender population, as well as participants’ prior interactions with the transgender population, will also be described.

Index of Transphobia Scale

The scores on the Index of Transphobia, modified from the Index of Homophobia, ranged from 36 to 61, with scores above 50 indicating increasing levels of “transphobia.” Half of the participants had scores above 50 indicating that they have “neutral to negative” feelings toward individuals who identify as transgender (Hudson & Ricketts, 1980). The highest score was 61, indicating more ambivalent or negative feelings toward this population (Hudson & Ricketts,

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1980). However, the other half of the participants had scores below 50, indicating more positive feelings toward transgender individuals, ranging from 35 to 43. Although these scores show that half of the participants had neutral to negative feelings toward this population, none of the participants verbally expressed any stigma or negative feelings toward people who identify as transgender.

Training and Interactions

The participants who volunteered to interview for this study had various levels of training on transgender issues. Numerous participants indicated that they had attended a workshop that their university had arranged for local clinicians and students (n = 8), whereas four indicated that they had not attended for various reasons. Most of the participants indicated that transgender issues had been addressed in some form in their graduate career, albeit very little (n = 10). Thus, Transgender (TG) issues addressed in graduate level courses very little was a general category under the domain formal clinical training. The interviewees elaborated on the dearth of training by discussing the little training that they had received about the population. K0P9 explained, “I think for Social Cultural we had one article on LGBTQ all kind of lumped together. I just remember it being like a little blurb in the article, but not a great deal of information.” Another participant, G8T1, explained that transgender issues, specifically, had not been a part of any of his courses. As the participants discussed their training including coursework, practicum training, and the workshops that they attended, they included their perceptions on the quality of training they received. Although the participants who attended the workshop indicated that it was very informative and beneficial, the majority of the participants felt as though their graduate training on transgender issues was insufficient (n = 11). C3X8 stated that she did not think that transgender issues were addressed enough. Another participant, A0Z9, discussed her belief that there should be more training in the event that a clinician must work with a client who identifies as transgender and needs to know some of the medical implications. A third participant discussed his concern about his lack of training, “I never know when I am going to run into this kind of client. It would be good to have some information at hand so I wouldn’t go in there

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completely blind.” Participants tended to agree that they would have liked more training on transgender issues. Another variant category (n = 6) indicated that the participants did not feel as though they were competent to provide therapy to an individual who identifies as transgender, due to their lack of training. Finally, the typical category, does not feel knowledgeable about TG issues, showed the participants’ beliefs that they had a lack of knowledge on specific issues related to the transgender population. With regards to interpersonal interactions, the category labeled Interacted with individual who identified as TG was typical (n = 7). The participants discussed having had interactions with the keynote speaker at a CE workshop put on by their university and various casual interactions with acquaintances. Of the individuals who did have interpersonal interactions with individuals who identified as transgender (TG), four perceived the interactions as being positive, whereas three viewed the interactions as neutral. With the variations in training and in interpersonal interactions, participants discussed how much of an impact they believed their experiences had on their beliefs. Out of the few participants who did have an interpersonal interaction, only two believed that the interaction increased their empathy and understanding of transgender individuals. However, eight participants believed that their training impacted their empathy and understanding. E5V6 stated, “Being in the LGBT class… has opened my eyes to how I feel.” A0Z9 explained, “Getting more knowledge about the ins and outs of everything about it has been helpful for me to increase my empathy towards these individuals.” Two individuals indicated that their interpersonal interactions with transgender individuals increased their knowledge about gender identity, whereas seven individuals believed that their training provided them with knowledge about gender identity. They noted that the workshop provided them with information on what terminology to use and discussed the misconceptions that were cleared up for them from their coursework. B1Y2 stated, “I suppose it made me aware of my lack of information. I think it made me more aware of my thinking so that I could kind of get in line my more recent beliefs and thinking.” Participants overall indicated that the training they received broadened their awareness and made them more sensitive to transgender issues.

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Discussion

The following section will revisit the hypotheses outlined at the beginning of the study. Relevant data from participants’ questionnaire data and interviews will be used to support or disprove the hypotheses. Subsequently, there will be a brief discussion about the implications and limitations of this study, as well as recommendations for training and future research in this area.

General Hypotheses

Two hypotheses were proposed regarding stigma within the graduate psychology student population. The hypotheses are presented in conjunction with relevant data from the results of the study. 1) If graduate level psychology students have received formal clinical training on the transgender population, then their level of stigma will be low according to the Index of Transphobia Scale and self-report. This hypothesis was partially supported. Half of the 12 participants had a score of 50 or below on the Index of Transphobia Scale, indicating that these participants have “mostly positive feelings about transgender individuals” (Hudson & Ricketts, 1980). All six of the individuals who scored low on the Index of Transphobia Scale had formal clinical training in the form of a CE workshop presented by an individual who identified as transgender, as well as brief training within coursework. However, of the remaining six individuals who scored above 50, indicating “neutral to negative feelings about transgender individuals,” three had gone to at least one workshop that included a focus on transgender issues. None of the participants verbally expressed any stigma aimed toward transgender individuals and the survey showed that the feelings toward transgender individuals may be neutral. Additionally, the highest score on the survey was 61, which shows that the feelings toward transgender individuals were closer to neutral/ambivalent than negative. Four participants indicated that they did not have more formal education about the transgender population beyond a brief mention in class, and did not have any interpersonal interactions with transgender individuals. Out of the four individuals who had

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neither formal clinical training nor interpersonal interactions with transgender individuals, three showed higher scores on the Index of Transphobia Scale. 2) If graduate level psychology students have had positive experiences interacting with transgender individuals, then their level of stigma will be lower according to the Index of Transphobia Scale and self-report. This hypothesis was not supported. Of the seven individuals who had indicated having an interaction with a transgender individual, only four indicated that the interaction was positive, while the other three indicated that the interaction was neutral. Out of the four individuals who indicated having experienced a positive interaction, two had scores above 50 on the Index of Transphobia Scale, indicating neutral to negative feelings toward transgender individuals. Thus, it does not appear that having had a positive interpersonal interaction was associated with increased positive feelings toward transgender individuals for these participants. In addition, there were several findings that emerged from the data not associated with hypotheses formed prior to conducting the study. First, the general consensus among the participants was that the training on transgender issues was sparse. The participants commented on the lack of focus on the transgender population. Furthermore, in instances when transgender issues were discussed in coursework, it was often only a brief mention in the context of discussing LGBTQ issues as a whole. This appears to relate to a second general category which indicated that the participants did not believe that their graduate training on transgender individuals was sufficient. Several of the participants commented that they do not feel knowledgeable about transgender issues, while several others indicated that they do not feel competent to provide therapy to clients who identify as transgender.

Implications

The data obtained from this study indicated that graduate psychology students do not believe that they receive enough formal clinical training to prepare them to work with individuals who identify as transgender. The participants indicated that the training they received was either optional or a cursory overview of the transgender population within the context of the wider

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LGBT population. This led to several of the participants, who had not sought out information independently, to feel incompetent to work with individuals within the transgender community. The results also appear to indicate that less training increases the likelihood that ambivalence toward transgender individuals may reside in some clinicians, which can be harmful to transgender individuals seeking treatment. Although the majority of the participants did not verbally express stigma, the Index of Transphobia Scale indicated some ambivalent feelings that participants did not report.

Limitations

The sample in this study was derived solely from graduate psychology students from a Psy.D. program at a small private university in the Midwest. There may be general characteristics that these individuals have due to the location of the program. Thus, this restricted sample inhibits the ability to make generalizations to other programs. A second limitation of this study may have been the general differences between individuals who felt comfortable enough to engage in an interview on stigma aimed toward transgender individuals. There is a possibility that the individuals who volunteered for this study fostered less stigma toward this population and thus felt more comfortable expressing their beliefs and feelings in an interview. Additionally, the discrepancy between the questionnaire data and the answers to interview questions indicate that the participants may not have felt as comfortable expressing any stigmatizing thoughts or beliefs in front of an interviewer, who they may have perceived to be an ally to the transgender community. However, some information was still gained via the confidential questionnaire, where participants may have felt more comfortable revealing their true feelings. Additionally, it would have been helpful to gain more insight into how the participants developed their beliefs and attitudes toward transgender individuals. This information would allow for a better understanding of whether or not more positive attitudes resulted from oneâ&#x20AC;&#x2122;s upbringing, training, and/or contact with educational material.

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Recommendations for Training

Given the apparent insufficiency of training regarding transgender issues, it is essential to train more clinicians to become competent in working with this population. Transgender individuals must receive therapy for one year in order to become eligible for important treatment options such as hormone replacement therapy and gender confirmation surgery (GCS). Thus, individuals who identify as transgender and wish to undergo GCS need to be able to find a clinician who possesses the competence and sensitivity to address these concerns. Some possible ways to more effectively prepare clinicians-in-training for working with clients with gender identity issues include offering more courses, workshops, or sections within courses that have a focus on the transgender population. The results of this study indicate that those who had formal training via a professional workshop, had positive interactions with individuals who identified as transgender, and sought out further educational materials, appeared to have the least amount of stigma aimed toward this population. Thus, by providing further opportunities to receive formal clinical training via CE workshops and courses on this population, graduate psychology students would have a chance to learn more about transgender issues. Providing such training may help beginning clinicians feel more competent working with transgender individuals, may reduce stigma within the professional community toward the transgender population, and may consequently increase the quality of care for transgender individuals seeking treatment from mental health practitioners.

Recommendations for Future Research

Given the paucity of research on reduction of transphobia within mental health clinicians, it is imperative that further studies be conducted in this area. Additionally, future studies should explore transphobia in a wider range of clinicians, including novice clinicians as well as seasoned clinicians. Such research could benefit the field of psychology by providing more information on the perceptions and possible stigma that various types of clinicians may hold toward the transgender population. It would also be beneficial for future studies to explore how reducing stigma may affect treatment outcomes for this population.

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Author Biographies

Dr. Kristen Cole is an independent practitioner at Downtown Psychological Associates. She obtained her Doctorate in Clinical Psychology at the University of Indianapolis in August 2014. She specializes in working with individuals who have experienced trauma, individuals with an addiction, and the LGBTQ population with an emphasis on individuals who identify as Transgender. Further research interests reside in personality disorders, depression, and mindfulness. Dr. Mixalis Poulakis is an Assistant Professor at the University of Indianapolis, School of Psychological Sciences. He immigrated to the United States from Piraues, Greece in 1992, to attend the University of Indianapolis. Dr. Poulakis graduated from the University of Indianapolis with his Master's and received his Doctorate in 2002. His research interests lie in the areas of multiculturalism, South Asian psychology and LGBT issues Dr. Lori Nabors is a graduate student of the University of Indianapolis and is about to finish her pre-doctoral internship at the Milwaukee VAMC. She is very interested in working with Veterans with schizophrenia and the topic of stigma. She will be starting a fellowship in Psychosocial Rehabilitation for SMI at the San Diego VAMC in September Kai Shin (Josephine) Chu is a Diversity Fellow under the supervision of Dr. Mixalis Poulakis in the Clinical Psychology Psy.D. program at University of Indianapolis, where she received her Master of Arts in Clinical Psychology. She will be completing her pre-doctoral internship in psychology at the San Bernardino County Department of Behavioral Health in California, and plans to complete concentration areas in both the Child and Adolescent Track and the Adult Track through her Psy.D. program. Her research and clinical interests include multicultural counseling, LGBTQ populations, racial/ethnic minorities, stigma, and identity issues Nidaa F. Kazi is a third year Clinical Psychology doctoral student at the University of Indianapolis. She received a Master’s degree in Clinical Psychology from the University of Indianapolis in 2014 and a Bachelor’s degree in Brain, Behavior, and Cognitive Science from the University of Michigan in 2011. Her professional interests include minority mental health,

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specifically South Asian American mental health, acculturation, depression, mindfulness, and anxiety disorders. Emma Carter is a graduate student at the University of Indianapolis, School of Psychological Sciences. She is currently pursuing her doctoral degree in clinical psychology Emma Carter received her Master of Arts degree in Clinical Psychology from the University of Indianapolis in 2014. Her research interests lie in the areas of Children and Autism Spectrum Disorder. Renita Sengupta, MA, is a PsyD student in Clinical Psychology at the University of Indianapolis School of Psychological Sciences. She was the 2012 recipient of her doctoral program’s Diversity Fellowship. She completed her Master’s degree in Clinical Psychology at the University of Indianapolis and her Bachelor’s degree in Psychology at the University of North Carolina at Chapel Hill. Her research and clinical interests include multicultural counseling, LGBTQ populations, racial/ethnic minorities, stigma, and identity issues.

References

Allport, G. W. (1954). The nature of prejudice. New York, NY: Perseus Book Publishing, L.L.C. American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: Kupfer, D. J., Regier, D. A.. American Psychological Association (2011). Answers to your questions about transgender people, gender identity, and gender expression. APA Lesbian, Gay, Bisexual, and Transgender Concerns Office and Public and Member Communications. Retrieved from http://www.apa.org/topics/sexuality/transgender.pdf Benestad, E. E. P. (2009). Addressing the disturbed, like ripples in water: Intervention with the social network of children who transe. Sexual and Relationship Therapy, 24(2), 207-216. doi: 10.1080/1481990902934735 Bess, A. J., & Stabb, S. D. (2009). The experiences of transgendered persons in psychotherapy: Voices and recommendations. Journal of Mental Health Counseling, 1-18.

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Biaggio, M., Orrchard, S., Larson, J., Petrino, K., & Mihara, R. (2003). Guidelines for gay/lesbian/bisexual-affirmative educational practices in graduate psychology programs. Professional Psychology: Research and Practice, 35(5), 548-554. Buhrke, R. A., (1989). Female student perspectives in training in lesbian and gay issues. The Counseling Psychologist, 17(4), 629 – 636. Coleman, E., Adler, R., Bockting, W., Botzer, M., Brown, G., Cohen-Kettenis, P., Zucker, K. (2011). Standards of care for the health of transgender, transgender, and gender nonconforming people. (7th ed.) The World Professional Association for Transgender Health. Retrieved from http://www.wpath.org/documents/Standards%20of%20Care%20V7%20%202011%20WPATH.pdf Corrigan, P. W., & Watson, A. C. (2002). Understanding the impact of stigma on people with mental illness. World Psychiatry, 1(1), 16-20. Eliason, M. J., & Hughes, T. (2004). Treatment counselor’s attitudes about lesbian, gay, bisexual, and transgendered clients: Urban vs. rural settings. Substance Use & Misuse, 39(4), 625-644.doi: 10.1081/JA-120030063 Heatherton, T. F., Kleck, R. E., Hebl, M. R., & Hull, J. G. (2000). The Social Psychology of Stigma. New York, NY: The Guilford Press. Herek, G. M. (1984). Attitudes toward lesbians and gay men: A factor analytic study. Journal of Gayity, 10(1/2), 39-51. Hill, C. E. (2012). Consensual qualitative research: A practical resource for investigating social science phenomena. Washington, DC: American Psychological Association. Hopwood, R. (2010, October). Understanding and ethically treating transgendered and gender variant clients. Symposium conducted at the CE Workshop of the University of Indianapolis, Indianapolis, IN. Hubschman, L. (1999). Transgenders: Life from both sides. Darby, PA: DIANE Publishing. United States of America. Hudson, W. W., & Ricketts, W. A. (1980). A strategy for the measurement of homophobia. Journal of Gayity, 5, 357 – 372.

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King, M. E., Winter, S., & Webster, B. (2009). Contact reduces transprejudice: A study on attitudes towards transgenderism and transgender civil rights in Hong Kong. International Journal of Sexual Health, 21, 17-34.doi: 10.1080/19317610802434609 Mizock, L., & Lewis, T. K. (2008). Trauma in transgender populations: Risk, resilience, and clinical care. Journal of Emotional Abuse, 8(3), 335-354. Namaste, V. K, (2000). Invisible lives: The erasure of transgender and transgendered people. Chicago, IL: The University of Chicago Press. Pardo, T. (2008). Growing up transgender: Research and theory. ACT for Trans. Youth, 1, 1-4. Penn, D. L., & Couture, S. M. (2002). Strategies for reducing stigma toward persons with mental illness. World Psychiatry, 1(1), 20-21. Phillips, J. C., & Fischer, A. R. (1998). Graduate students’ training experiences with lesbian, gay, and bisexual issues. The Counseling Psychologist, 26, 712 – 734. Raj, R. (2002). Towards a transpositive therapeutic model: Developing clinical sensitivity and cultural competence in the effective support of transgender and transgendered clients. The International Journal of Transgenderism, 6(2), 1-38. Ryan, D. (2000). Lesbian, gay, bisexual, and transgender parents in the school systems. School Psychology Review, 29(2), 207-216. Sullivan, M. K. (2003). Sexual minorities: Discrimination, challenges, and development in America. Binghamton, NY: The Hawthorn Social Work Practice Press. Whitman, J. S. (1995). Providing training about sexual orientation in counselor education. Counselor Education and Supervision, 35(2), 168 – 176. World Health Organization. (2010). The ICD-10 classification of mental and behavioral disorder: Clinical descriptions and diagnostic guidelines. Retrieved from http://www.who.int/classifications/icd/en/bluebook.pdf Yutrsenka, B. A. (1995). Making a case for training in ethnic and cultural diversity in increasing treatment efficacy. Journal of Consulting and Clinical Psychology, 63, 197 – 206. Zucker, K. J., & Bradley, S. J. (2005).Gender identity and psychosexual disorders. American Psychiatric Association, 3(4), 598-617.

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Tables and Figures Table 1 Frequency Analysis of CQR Domains and Categories Domains and Categories Formal Training a. Attended workshop on TG issues b. Did not attend workshop on TG issues c. TG issues addressed in graduate level courses very little d. TG issues not addressed in graduate level courses e. Practicum training on TG issues f. Engaged in self-study via literature g. Engaged in self-study via media Quality of Training a. Does not believe graduate training on TG issues was sufficient Knowledge and Competency a. Feels competent to provide therapy to TG client due to training b. Feels competent to provide therapy to TG client due to self-study c. Does not feel competent to provide therapy to TG clients d. Does not feel knowledgeable about TG issues Interpersonal Interactions a. Interacted with individual who identified as TG b. Viewed interaction as positive c. Viewed interaction as neutral d. Has not had any interaction with TG individual Impact of experiences a. Empathy and understanding increased Due to interpersonal interactions b.

Frequency Typical Variant General Variant Variant Typical Variant General Variant Variant Variant Typical Typical Variant Variant Variant

Variant

Empathy and understanding increased Due to formal training

Typical

Increased knowledge about TG identity Due to interpersonal interactions

Variant

Increased knowledge about TG identity Due to formal training

Typical

Increased awareness of TG issues and stigma Due to interpersonal interactions

Variant

Increased awareness of TG issues and stigma Due to formal training

Typical

Increased comfort with TG individuals Due to interpersonal interactions

Variant

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End of Life Discussions in the Community Elizabeth R. Houglan Adkins Abstract Advance Care Planning (ACP) is a process of review and discussion between patients, family members, and healthcare providers focusing on end of life goals of care. This pilot study assessed the effects of increased discussions about ACP for community-dwelling residents age 50+ with a chronic medical condition and their surrogate decision makers. Residents were recruited from senior community buildings owned or managed by National Church Residences (NCR). The Gunderson Lutheran Respecting Choices Patient Centered Advance Care Planning (PC-ACP) was used to guide a discussion about ACP between residents and their surrogate decision makers. Twenty-two participants completed a Health Care Directive (HCD) and Agent Comfort Form (ACF) pre- and post-discussion. Qualitative analysis of data showed that patients and decision makers were able to identify their health care goals using the advanced care planning tools. Though this was a pilot study limited by a small sample size, the results showed a tendency for patients to want to limit life-sustaining treatment if they became terminally ill or in a vegetative state. Surrogate decision makers were more confident that they would be able to advocate for their loved ones. Keywords: advance care planning, health care directive, advance directive, end of life, palliative care, elderly Introduction Many adult Americans desire to die at home and avoid life support if terminally ill, but more commonly, one in five Americans dies in or shortly after admission to the Intensive Care Unit (ICU). Approximately half of all United States (US) deaths occur in a hospital with more than 20% of all U.S. health care dollars being spent on patients in the last year of their lives (Halpern, 2012). The impact of not having communicated or not having developed, an Advance Care Plan is enormous for the patient as well as the family. The economic impact can be

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substantial, with one study noting that 10-16% of families with a terminally ill family member have to take out a loan or mortgage, spend their savings, or get another job to cover costs of medical care. Patients can feel guilty about the financial toll their illness places on their loved ones and can feel helpless about the financial fallout that might occur after their death (Donley & Danis, 2011). Patients and families may pursue unrealistic treatments, desperately hoping for a cure, with the eventual death leaving surviving family members with guilt and regret (Murray & Jennings, 2005). Organizations like Aging with Dignity (https://www.agingwithdignity.org/) and many others encourage patients, family members, and health care providers to sit down and discuss end of life decisions in advance, before patients are unable to express their wishes for a peaceful death. The benefit of a written health care directive is the patientâ&#x20AC;&#x2122;s ability to provide clear documentation of his/her intentions (Ward, 2007). The purpose of the discussion however, should not be simply to get forms signed, but to discuss with patients and families their desires and goals regarding treatment, including benefits and risks of treatment, issues related to medically futile care, and withdrawing or withholding treatment (Dea Moore, 2007). Studies by the Agency for Healthcare Research and Quality (AHRQ) show that patients are willing to discuss end of life care, but many have not participated in those discussions with their health care providers. Patients are more likely to accept or refuse treatments based on how invasive the treatment might be or how long the treatment might last. End of life care plans may change based on whether the patient is considering their current state of health versus a future hypothetical scenario (AHRQ, 2014). Advance Care Planning should be initiated well before the patient is terminally ill or develops diminishing cognitive abilities (Waldrop, 2012). If patients are only approached near the time of their death to discuss their end of life wishes, then opportunities are lost to help patients be more fully involved in developing their Advance Directives and choosing where and under what circumstances they wish to die. There is limited research on promotion of end of life discussions or completion of Advance Directives in healthy adults living in community living settings. The purpose of this evidence-based pilot study was to assess the effects of Advanced Care Plan discussions with community-dwelling adults age 50 and older with chronic medical conditions and their surrogate decision makers, using the Respecting Choices PC-Advance Care Planning (PC-ACP) format

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developed at Gunderson Lutheran Medical Center (http://www.gundersenhealth.org/respectingchoices). Outcomes were measured using the Health Care Directive (HCD) and Agent Comfort Form (ACF), which were administered both pre- and post-discussion between the residents and their surrogate decision makers.

Literature Review

Search Strategies

Databases searched included OhioLink, Google Scholar, Ebsco, Proquest, and EJC. These databases were utilized because they represent a wide range of healthcare-related journals. The literature search began in February 2013 and was ongoing during the project. Key words for search included “End of Life, Primary care, discussions, Do Not Resuscitate, advance directives, patient preferences, protocols, code status, advance care planning, palliative care, POLST, trajectories of illness, trajectories of dying, ALLOW Natural Death, end of life guidelines, protocols and palliative care, Medical Directives, and health care directives.”

Theoretical Model – Glaser & Strauss

In 1966, Glaser and Strauss developed the Levels of Awareness model. This model outlined how patients in hospital settings became aware of their impending death. They developed four “awareness contexts” based on the awareness of the health care team, patient and family awareness of the patient’s status, and recognition by each party of the other’s awareness (Glaser & Strauss, 1966). Closed Awareness: The patient is unaware of his terminal state but everyone else is aware. This may be due to the family and health care team belief that the patient might not be able to cope with full disclosure of the severity of the illness. Suspected awareness: The patient suspects what everyone else knows; this may be triggered if the health care team and the family have inconsistent communication and behavior. Mutual pretense awareness: Everyone knows the patient is dying but pretends otherwise. Open awareness: Everyone knows the patient is dying and acknowledges that fact.

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This model is crucial to Advance Care Planning and this project. If a person and his family do not have open awareness, then it is unlikely that any discussions about end of life care will occur. Patients who are aware of the imminence of death are more likely to die peacefully and more likely to feel like life was worth living (Glaser & Strauss, 1966). Many times, the patient is aware of his increasing debility and severity of illness, but the surrogate decision maker is not, leading to lack of communication about the benefit or futility of continuing medical treatments related to the patient’s quality of life goals.

Barriers to End of Life Care Discussions

The Patient Self Determination Act (PSDA), signed in 1991, was a federal mandate allowing patients to accept or refuse treatment, and be given information about Advance Directives (ADs) upon admission to a health care facility. Efforts to promote use of Advance Directives have experienced only limited success, with only 5-15% of patients having a completed an Advance Directive (Waldrop, 2012). Several barriers affect health care providers’ willingness to discuss end of life care including lack of provider education; inadequate methods to provide information; lack of protocols for communication, reluctance to discuss death; difficulty discussing the unknown; projecting undesirable outcomes; asking patients to make decisions about an uncertain “future self”; and a lack of shared understanding of values among the patient, family, and health care provider (Waldrop, 2012).

Current Recommendations for Practice

The Agency for Healthcare Research and Quality (AHRQ) recommends that patients be asked about end of life preferences at regularly scheduled outpatient visits (2014). If a patient has an Advance Directive, it should be obtained and documented in the patient chart. The health care provider should then document the presence and type of Advance Directive and schedule an appointment at a later date to discuss the Advance Directive in detail and document the findings. Non-professional staff can print out and give any desired forms to the patient and answer simple questions. If needed, the questions can be routed to the provider through a telephone consult so

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the question can be answered in a timely fashion. Existing patients should have their charts reviewed at least annually during their Medicare wellness visit or wellness visit by their private insurance carrier. Patients who only come in for ill visits should be asked to provide an Advance Directive if available, or schedule an appointment to discuss. The following steps are recommended to encourage discussion about Advance Directives: (a) initiate a guided discussion using hypothetical scenarios; (b) introduce the subject of Advance Care Planning and offer information; (c) prepare and complete Advance Care Plan documents such as a Living Will and Durable Power of Attorney for Health Care; (d) review the patient preferences regularly and update documentation; (e) Apply the patient’s desires to actual circumstances. Research has shown that patients are more likely to accept treatment for conditions they consider better than death, and refuse treatment for conditions they consider worse than death. Options that are more invasive (mechanical ventilation or dialysis) may be less acceptable then less invasive treatments (CPR or antibiotics) (AHRQ, 2014).

Respecting Choices Patient Centered Advance Care Planning

The Respecting Choices Patient Centered Advance Care Planning (PC-ACP) facilitator certification is a copyrighted training program developed by Gunderson Medical Foundation (http://www.gundersenhealth.org/respecting-choices), which includes several hours of online training and continued training onsite. The goal is to train interested persons in protocols to initiate discussions with patients and decision makers through a series of questions to help direct the process of the Advance Care Plan by identifying decision makers, goals of treatment for the patient, and identifying any religious, personal, or cultural views that would affect treatment choices. The program acknowledges that the discussion is not a static one-time discussion, but is fluid and needs to take place over time as the patient’s health changes. The First Steps ACP facilitator training manual is used by the PC-ACP program to identify the surrogate decision maker and his/her willingness to advocate for the patient should it become necessary. Because the PC-ACP uses a structured interview technique, facilitators are encouraged to adhere to the wording of the script. If a facilitator does not know an answer about the client’s health care, likely course of disease, or possible outcomes, they are instructed to help

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the client make a list of questions for his healthcare provider. Resources in the training provide a quick outline of the most important questions that health care providers, patients, and family members need to discuss. Once these preliminary questions are asked, a future discussion can be planned as needed. Several studies have found significant improvement in Advance Directive preferences being documented and followed using the PC-ACP training developed by the Gunderson Lutheran Health system. An early study by Schwartz et al. (2002) using this program, illustrated positive results in 61 ambulatory geriatric patients with the majority of patients/surrogate decision makers showing congruence in their understanding of patient goals of end of life care. However, this study is limited by the small sample size. More recently, a retrospective study in 2014 assessing the use of the PC-ACP training compared Advance Directives from 722 hospitalized patients. The study found significant improvement in the use of Advance Directives among minorities (25.8% to 38.4%), though not in white patients (35.9% to 42.9%), with high consistency for all orders (74% to 96%) (Pecanac, Repenshek, Tannenbaum, & Hammes, 2014). Most of the previous research in Advance Care Plan using the PC-ACP has used participants recruited from hospital settings with dialysis units and cardiac rehabilitation units (Kirchhoff, Hammes, Kehl, Briggs, & Brown, 2012), or ambulatory clinics or physician practices (Schwartz et al., 2002; Kirchhoff, Hammes, Kehl, Briggs, & Brown 2010), but none have targeted residents living in community living settings. The community living setting is crucial as these patients may have multiple medical issues that require comprehensive primary care provider visits which may not allow time to address end of life decisions. Many patients see multiple specialists who may not be coordinating care effectively, may require more complex home care needs due to multiple hospital stays, may lack surrogate decision makers who can advocate for them, or may have mental health issues that prevent them from articulating their wishes at the primary care visits. Residents may see their health care provider every three months or less frequently, and as has been identified in the literature, most primary care providers are not willing or able to initiate this discussion with their patients.

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Methodology

Implementation

Project setting/population. The setting for this project was senior living communities in the Summit County area managed or owned by National Church Residences (NCR). Subjects were recruited by the Service Coordinators of the buildings using data from the Care Path documentation program used by National Church Residences. Residents had a Mini Mental Status Exam (MMSE) on file as these are done routinely. The project population included any patient 50 and older who had Chronic Obstructive Pulmonary Disease (COPD), Atherosclerotic Heart Disease (ASHD)/Congestive Heart Failure (CHF), or dementia. Patients and surrogate decision makers were approached and enrolled into the study as a pair. Residents and surrogate decision makers signed consent. The Health Care Directive Form (Appendix A) was given to the patient and an Agent Comfort Form was given to the surrogate decision maker (also referred to as the Agent), (Appendix B), before the intervention to see if the patient and decision maker could articulate what the patient (the Principal) would want in terms of end of life care and how the surrogate felt about his/her competency in fulfilling this role. A structured interview was performed and the tools were completed again, after the intervention. Five buildings were used to recruit subjects with a total of nearly 400 potential subjects available for the project. A total of 22 subjects and SDMs completed the intervention and questionnaires.

Human subject protection. Human rights were protected by selecting persons who had a Mini Mental Status Score (MMSE) score 23 and above, and who could understand the consent form, sign and participate without undue distress. The surrogate decision maker also signed a consent form. The project was reviewed and approved by the University of Toledo (UT) Institutional Review Board (IRB).

The Health Care Directive. The Health Care Directive (Appendix A) was a tool initially developed by Linda Emanuel in 1989 (Emanuel & Emanuel, 1989) to help individuals develop a plan of care for which interventions (CPR, ventilator support, artificial nutrition,

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surgery, dialysis, blood transfusion or simple diagnostic testing) they would want if they had a medical emergency, and were unable to speak for themselves. These interventions were then graded on a scale of 1 (comfort care only), 2 (attempt cure), and 3 (prolong life). There were six scenarios listed: (a) coma and no hope of recovery; (b) coma, with small chance recovery, moderate chance of some disability, and large chance no recovery; (c) nonreversible brain injury and cannot communicate or care for self and terminally ill; (d) nonreversible brain injury, cannot communicate or care for self and not terminally ill; (e) incurable chronic condition with physical or mental suffering and will eventually cause death, and a life threatening but potentially reversible condition; (f) my usual state of health with a life threatening but potentially reversible condition.

Agent Comfort Form. The Agent Comfort Form (Appendix B) was developed by DeltaQuest (2002) and asked six questions on how comfortable an Agent (the surrogate decision maker) felt being a decision maker for an individual (the Principal). The answers were then scored on a range of 0 (not at all), 1 (a little bit), 2 (somewhat), 3 (quite a bit), and 4 (very much). The questions were (a) I feel comfortable being a decision maker; (b) I am concerned I will not make decisions reflecting my Principal’s wishes; (c) I believe I understand my Principal’s preferences; (d) I am not confident I will be able to make important medical decisions in a crisis; (e) I feel adequately informed about my Principal’s wishes; (f) the responsibility I have for my Principal’s health care decisions is overwhelming.

Implementation plan. The service coordinators distributed information sheets that described the project and who was eligible to participate. Residents who were interested in participating contacted the service coordinators. In addition, informational meetings were held in five buildings in Summit, Portage, and Stark Counties to inform potential participants of the purpose or the proposed project. Service coordinators assisted to contact and set up appointments to recruit interested participants and surrogate decision makers. Service coordinators made sure there was a documented MMSE on file, and any resident who scored less than 23 was excluded from the study. The investigator contacted the residents to sign the consent, give the Health Care Directive, and scheduled appointments with residents and their

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surrogate decision makers. The Service Coordinators assisted residents if they had questions about forms and helped collect the forms. The investigator interviewed the resident and surrogate decision maker using Respecting Choices protocol and had them complete a second Health Care Directive and Agent Comfort Form post-interview.

Barriers and facilitators. Initial barriers that required intervention included a lack of willing participants initially when they were not directly approached by the Service Coordinator. Residents did not understand the project even after explanation (“I already have my will done”) or insisted that even though they had a decision maker, they would not have time to participate. Several residents reported they had no family or decision maker to help them. Another barrier was that the Health Care Directive was difficult at times for some residents to fill out, and the Agent Comfort Form had some confusing questions that required some time to answer. The time needed was overestimated and tended to be a barrier to potential subjects. Interviews were scheduled on weekends and evenings to accommodate schedules of decision makers. Service Coordinators who used a more direct approach of actively recruiting residents and explaining why the intervention was needed tended to be more successful at recruiting residents and decision makers. Cost remained an issue since there was no financial assistance and the tools from Gunderson were purchased from the Respecting Choices Web site. Facilitators were the Service Coordinators, who understood the need for this intervention, and the NCR Corporate office in Columbus was very supportive of the project.

Outcome Measures

The outcomes for the project evaluated if subjects and surrogate decision makers were able to understand what the subject would want in terms of end of life care, and then be able to openly discuss these wishes with each other. This project also evaluated how comfortable the surrogate decision maker felt before and after the intervention with the role given to them. Data was collected from the demographic form, the Health Care Directive, and the Agent Comfort Form. The data was entered into SPSS Statistics Program version 21.0 (2012) and results were compared before and after implementing the PC-ACP interview with subjects and their surrogate

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decision makers. The subject was also provided with a Living Will and Durable Power of Attorney-Health Care with instructions to complete if desired. Subjects who expressed an interest in having a DNR form completed were referred back to the Service Coordinator. The results of the scores from the Health Care Directive and Agent Comfort Forms pre- and postinterview were entered into the SPSS Statistics Program version 21.0 by the student investigator. Descriptive data analysis was completed to analyze the data from the demographic form, the Health Care Directive, and Agent Comfort Form.

Results/Findings

Thirty subjects and surrogate decision makers completed demographic form (Table 1) and Health Care Directive pre-interview forms of the project, but only 22 completed the pre- and post-interview Health Care Directive (Table 2) and the pre- and post-interview Agent Comfort Form (Table 3).

Demographics

The 22 subject ages ranged from 58-89, with most ranging from 63-73, 77% were female, most had a high school diploma (31%), while 18% had some high school, and 18% had some college. 86 % were white, 77% were Christian, and 50% made <$12,000. The most common diagnosis was heart disease (77%), and most subjects (63%) had no prior experience with end of life planning or hospice.

Health Care Directive

For all the scenarios, most of the participants were able, after the intervention, to identify which treatments were likely to prolong their suffering versus reach their stated quality of life goals. For scenario (a) (coma), the most significant changes occurred in CPR and diagnostic testing. Subjects choosing comfort care only (CCO) initially was 63%, which rose to 86% after the intervention, while attempt cure decreased from 27% to 13%. One participant chose prolong

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life prior to the intervention, but none did afterwards. Prolong life options decreased from 22% to 4.5% after the intervention. This indicates that once participants were able to understand the likely trajectory of their illness, they were better able to identify what treatments would not benefit them. Also, by focusing on an open level of awareness (Glaser & Strauss, 1966), participants and surrogate decision makers were able to ask questions about how the other felt about the information they received. For scenario (b) (brain injury), the biggest changes were in preference for ventilator support, surgery, and artificial nutrition. Prior to the intervention, 59% wanted comfort care only (CCO), while after the intervention, this rose to 86%. Similar results were found in surgery preference, where prior to the intervention, 54% wanted CCO, while after the intervention, this increased to 81%. Prolong life remained stable at 9% pre and post intervention, while attempt cure option decreased from 36% to 9%. Artificial nutrition also showed a similar increase in the CCO option, with 59% requesting CCO prior to the intervention, while 81% opted for CCO after the interview. Attempt cure decreased from 31% to 13%. Prolong life also decreased from 9% to 4.5%. This scenario demonstrated that most subjects understood that a severe brain injury would not improve and that interventions such as CPR, surgery, or artificial nutrition would not improve their condition and allow them to enjoy what they considered an acceptable quality of life. For scenario (c) (brain injury-terminally ill), the results were less striking but consistent. For CPR, subjects prior to the intervention chose Comfort Care Only (CCO) 77% prior and 86% after, but attempt cure decreased from 18% to 4.5% after the interview. For surgery, CCO increased slightly from 72% to 86%, while attempt cure decreased from 22% to 4.5%. Interestingly, the prolong life option increased slightly from 4.5% to 9%. Again most subjects were able to identify that life prolonging treatments such as CPR for someone who was brain injured and terminally ill would not permit what they considered an acceptable quality of life. For scenario (d) (brain injury-not terminally ill), for CPR and ventilator, results were striking. For CPR, Comfort Care Only CCO rose from 72% before the intervention, to 90% after, while attempt cure decreased from 9% to 4.5%. Prolong life was chosen by 18% prior to the intervention, while only 4.5% after. For ventilator usage, CCO rose from 68% to 90%, while attempt cure decreased from 13% to 4.5% and prolong life decreased from 18% to 4.5%.

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Subjects were able to understand that CPR, and ventilator use would simply prolong a poor quality of life and not allow them to live at home. For scenario (e) (chronic fatal illness and reversible life threatening), the change for ventilator support was most striking. Prior to intervention, Comfort Care Only (CCO) was 68% while after was 86%. Attempt cure decreased from 22% to 4.5%, while prolong life fell from 9% to 4.5%. Subjects verbalized understanding that using a ventilator to treat them a potentially fatal illness might help them in the short term, but not long-term. For scenario (f) (current health and life threatening), for CPR and ventilator support the change in answers was evident. For CPR, Comfort Care Only (CCO) was chosen 18% prior to intervention, while 50% chose this option after the interview. Prolong life decreased from 45% to 13%. In summary, subjects preferred after the intervention to decline CPR, ventilator support, and a feeding tube, or to wish a trial only versus continuing futile treatment. Subjects were surprised to find out how unlikely CPR was to be successful in clients with chronic medical problems, and were not willing to suffer the likely consequence of needing other medical interventions such a feeding tube or ventilator support afterwards if their family would then have to stop the intervention. Subjects and surrogate decision makers tended to be surprised by the notion that they could decide at any time during any intervention except CPR to place a time limit on how long they wanted to pursue a treatment depending on how successful the treatment was or how invasive or painful it might be. For instance, if a person was not able to be weaned off the ventilator and was unlikely to recover their previous level of function and the next option was a feeding tube, they could elect to stop both of those interventions if desired relating to their goals of comfort and happiness. Surrogate decision makers for the most part were involved in the interview and asked appropriate questions regarding what might be expected from certain interventions and how those interventions might affect the subjects stated quality of life goals.

Agent Comfort Form

The Agent Comfort Form data with the most noticeable change occurred in Questions 1 (I feel comfortable exercising my role as Health Care Agent for my Principal), and 4 (I am not

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confident that I will be able to make important medical decisions for my Principal in a medical crisis). Participants who answered Question 1 prior to intervention chose not at all (4.5%), quite a bit (27%), very much (68%); while after the interview, they chose quite a bit (18%), and very much (81%). This confirmed what was noted with the participants in that when the surrogate decision maker understood the likely trajectory of their chronic illness, and were able to openly discuss their fears and concerns, they were more comfortable with their role. Also, transitioning to an open level of awareness allowed questions about quality of life and outcomes of possible intervention to be answered for both participants and decision makers.

Discussion

Surrogate decision makers answered confidently before the intervention that their role was not stressful and they understood what their Principal wanted, but afterwards many admitted that they had not understood exactly what their Principal wanted. Surrogate decision makers asked their Principals during the interview to clarify under what circumstances the Principal might want a certain intervention or how long the Principal would want for the surrogate decision maker to attempt an intervention before stopping the treatment. Overall, surrogate decision makers felt that even if their answers did not change after the interview, they appreciated the opportunity to sit down and have this discussion with their loved one. Residents were able to articulate that they did not want to live as a “vegetable” but were not able to articulate in detail what that meant until they discussed what their quality of life goals would be and what was important to them. Most subjects and surrogate decision makers overestimated the effectiveness of CPR during the discussion. After discussion many subjects expressed that they did not want to be on ventilator or have a feeding tube for a non-reversible illness, but would be willing to have CPR or Attempt Cure if they had a chance to return to their current level of activity. They were able to identify and articulate that any attempt at a cure be monitored and stopped if their condition did not improve or would require permanent disability. Most subjects and surrogate decision makers felt the interview technique would allow them to continue the discussion between themselves, other family members, and the subjects’ primary care provider. Many subjects

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requested information on DNR and were referred to their Service Coordinators for help in getting them completed.

Limitations of Study

Limitations of this study included small sample size, which may be improved by more aggressive identification and contact of potential subjects by the Service Coordinator, who had a much closer relationship and better understanding of that resident’s health related issues and social situation. Being approached by a stranger, even if introduced by the Service Coordinator, may have been too overwhelming for some residents. Starting earlier in the process by having Service Coordinators pass out information to the residents when they had their scheduled interactions, or offering end of life planning brochures or other information to family members, may have opened up discussion and encouraged participants to take part in this study. Other limitations included confusion with Health Care Directive and Agent Comfort Form forms being too complicated for some participants to complete without assistance. Reviewing the tools and rewriting them in simpler terms may help address this issue for the next study.

Future Recommendations and Conclusions

Many of the most profound changes in health care (fathers in the delivery room, transparency in understanding health care costs, insurance payment for alternative health care, and open access to medical records), have come from public demand for such innovations. Policy makers have to empower the public by providing financial incentives for health care providers to educate the public on the need for Advance Care Planning. Currently, there is little reimbursement for Advance Care Planning in primary care, and none in home health care or other rehabilitation or nursing home settings. Home health services, nursing homes, and other settings provide a unique opportunity to help patients address these needs as often services are required on a long term basis (such as dialysis or home health), or recurrently for short periods (rehabilitation or nursing homes), where patients may develop trusting relationships with health care providers who are well aware of the likely prognosis of that client’s health condition.

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Health care payers should evaluate continued medical treatments that offer little or no benefit to terminally ill patients or patients with no hope of meaningful recovery. Policy makers need to look at funding for training for Advance Care Planning to help offset the cost for small health care organizations that may not be able to provide financial support for their staff to take Advance Care Plan training.

Implications for future practice. Organizations that care for the elderly need to empower their staff to have meaningful discussions with their residents about their end of life wishes in light of their view on quality of life. Nurses and social workers are prime candidates to be offered PC-ACP training and use that knowledge to initiate these discussions. The cost of PCACP training would be an initial barrier but as health care policy changes, this barrier should decrease. The Gunderson training does emphasize that the PC-ACP interview technique is structured and scripted, but open discussion is encouraged between patients and surrogate decision makers and questions that may arise are to be written down and discussed with the patient’s healthcare provider. Health care providers including nurses and social workers need to work as a team to advocate advance care planning participation. This would take the burden off the physician to initiate the discussion and create a pathway that all patients are offered during their care at any stage of their disease. Advance care plans needs to be communicated to all participants and reinforced intermittently as the patient’s medical situation changes. Patients with limited education, mental health issues, or lack of a surrogate decision maker may require more one on one assistance. They might benefit from assistance using audio or video tools or writing a letter to their health care provider stating their end of life issues. Residents living in senior communities are perfect candidates to start end of life discussions given that they have access to supportive staff who are knowledgeable about how to broach the subject and provide guidance. The PC-ACP interview technique can be an invaluable tool for Service Coordinators who may have limited comfort and experience discussing end of life plans. The structured interview technique with optional brochures, which discuss concepts such as feeding tubes, ventilator usage, and DNR, would provide residents and their surrogate decision makers with tools with which to discuss options with resident’s primary care provider. Though the cost of $400 for the Gunderson training may be difficult for Service Coordinators to

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purchase themselves, a large corporation such as National Church Residences could reimburse staff and encourage not only Service Coordinators to participate, but also their home health and nursing home staff including social workers and nurses. At the very least, every resident should have the opportunity to understand options regarding DNR, if desired. Residents should be offered this discussion sometime during the admission process, and yearly thereafter or as often as their condition changes. It should be considered as part of the process every resident participates in, rather than as something that is only offered to residents who have imminent issues. Leaders of organizations that provide care to the medically fragile and elderly should promote discussions about end of life care that meets patient, family, and societal needs so that patients have the opportunity to die where and how they want, families have emotional closure, and society does not have to bear such a financial burden providing futile and expensive care at end of life.

Author Biography

The author received her RN diploma from Akron City Hospital’s Idabelle Firestone School of Nursing, her BSN and MSN (Adult NP) from Kent State University, post-graduate FNP coursework from Northern Kentucky University, and her DNP from University of Toledo. She has 30 years nursing experience with 20 years as a NP in both civilian and military settings and has incorporated “end of life” discussions in her practice.

References

Agency for Healthcare Research and Quality (AHRQ). (2014). Improving health care and palliative care for advanced and serious illness. Rockville, MD. Retrieved from http://www.ahrq.gov/research/findings/evidence-based-reports/gappallcaretp.html Dea Moore, C. (2007). Advance care planning and end of life decision making. In K. Kuebler, D. Heidrich, & P. Esper (Eds.), Palliative & End of life care (2nd Ed) (pp. 49 – 62). St Louis, MO: Elsevier. DeltaQuest Foundation, Inc. (2002). Agent Comfort Questionnaire. Concord, MA: DeltaQuest Foundation, Inc.

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Donley, G., & Danis, M. (2011). Making the case for talking to patients about the costs of end of life care. Journal of Law, Medicine, and Ethics, summer, 183 – 193. doi: 10.1111/j.1748-720X.2011.00587.x. Emanuel, L. L., & Emanuel, E. J. (1989). The medical directive: A new comprehensive advance care document. The Journal of the American Medical Association (JAMA), 261(22), 3288 – 3293. PMID: 2636851 Glaser, B., & Strauss, A. L. (1966). Awareness of dying. Chicago, IL: Aldine Publishing Company. Halpern, S. (2012). Shaping end-of-life care: Behavioral economics and advance directives. Seminar of Respiratory Critical Care Medicine, 33, 393 – 400. IBM Corp. (2012). IBM SPSS Statistics for Windows, Version 21.0. Armonk, NY: IBM Corp. Kirchhoff, K., Hammes, B., Kehl, K., Briggs, L., & Brown, R. (2010). Effect of a disease specific planning intervention on surrogate understanding of patient goals for future medical treatment. Journal of American Geriatrics Society, 58, 1233 – 1240. Kirchhoff, K., Hammes, B., Kehl, K., Briggs, L., & Brown, R. (2012). Effect of a disease specific advance care planning intervention on end of life care. Journal of American Geriatrics Society, 60, 946 – 950. Murray, T., & Jennings, B. (2005). The quest to reform end of life care: Rethinking assumptions and setting new directions. Hastings Center Report, s52 – s57. Pecanac, K., Repenshek, M., Tennenbaum, D., & Hammes, B. (2014). Respecting choices and advance directives in a diverse community. Journal of Palliative Medicine, 17(3), 282 – 287. Schwartz, C. E., Wheeler, H. B., Hammes, B., Basque, N., Edmunds, J., Reed, G. … Yanko, J. (2002). Early intervention in planning end-of-life care with ambulatory geriatric patients: Results of a pilot trial. Archives of Internal Medicine, 162, 1611 – 1618. Waldrop, D., & Meeker, M. A. (2012). Communication and advanced care planning in palliative and end of life care. Nursing Outlook, 60, 365 – 369. Retrieved from http://0journals.ohiolink.edu.carlson.utoledo.edu/ejc/pdf.cgi /Waldrop_Deborah_P.pdf?issn=00296554&issue=v60i0006&article=365_caacpipaec Ward, R., (2007). End of life legal considerations. The Journal for Nurse Practitioners, 668 – 672. DOI: http://dx.doi.org/10.1016/j.nurpra.2009.07.021

5(9),

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Tables (please contact the author)

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Appendix A Emanuel and Emanuel Health Care Directive

INTRODUCTION The Health Care Directive contains six illness situations that involve incompetence. In each situation you consider possible interventions. The situations include two involving coma (A & B), two involving dementia (C & D) and two involving temporary inability to make decisions (E & F). The interventions you may state preferences about are described briefly here; if you have further questions ask your Health Care Provider. The goals of therapy can be chosen from those listed or stated in your own words.

Health Care Directive Instructions This form will give you the chance to consider your advance care wishes regarding types of life sustaining treatment. These types of life sustaining treatment are:

1. Cardiopulmonary Resuscitation (aimed at reviving a person who is on the point of dying, involves chest compressions, drugs, electric shocks and artificial breathing). 2. Mechanical Breathing (the use of a breathing machine called a ventilator to help someone who cannot breathe on his own). 3. Artificial Nutrition and Hydration (food and fluids given by a feeding tube placed into the mouth or stomach). 4. Major Surgery (such as removing the Gall Bladder or part of the intestines. 5. Kidney Dialysis (machine hooked to a person and used to clean the blood when a personâ&#x20AC;&#x2122;s kidneys have stopped working). 6. Chemotherapy (medications to fight cancer). 7. Antibiotics (to fight infection) 8. Simple Diagnostic tests (blood or urine testing) 9. Pain Medication even if indirectly would shorten my life Consider your goals of health care treatment on a scale of 1-3 where: 1: Comfort Care Only-quality of life over long life- do not want intervention 2: Attempt Cure but Reevaluate Often- treatment trial, stop for no improvement 3. Prolong Life- Treat Everything - want intervention

Now, considering the above treatments and your goals, answer the following 6 scenarios.

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SITUATION (A) If, in the opinion of my physician and two consultants, I am in a coma or in a persistent vegetative state, and have no known hope of regaining awareness and higher mental functions no matter what is done, then my wishes, if medically reasonable, for this and any additional illness would be on a scale of 1-3:

CPR-

Mechanical Ventilation-

Surgery/Dialysis/Blood Transfusion-

Artificial Nutrition and Fluid-

Simple diagnostic tests/antibiotics-

SITUATION (B) If, in the opinion of my physician and two consultants, I am in a coma, with a small and uncertain chance of regaining higher mental functions, and a greater chance of recovering with some residual damage, and a much greater chance of not recovering at all, then my wishes, if medically reasonable, for this and any additional illness would be:

CPR-

Mechanical Ventilation-

Surgery/Dialysis/Blood Transfusion-

Artificial Nutrition and Fluid-

Simple diagnostic tests/antibiotics

Situation (C) If, in the opinion of my physician and two consultants, I have nonreversible brain damage which makes me unable to recognize people, or to speak meaningfully to people, or to live independently, and I also have a terminal illness, then my wishes, if medically reasonable, for this and any additional illness, would be:

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CPR-

Mechanical Ventilation-

Surgery/Dialysis/Blood Transfusion-

Artificial Nutrition and Fluid-

Simple diagnostic tests/antibiotics

SITUATION (D) If, in the opinion of my physician and two consultants, I have nonreversible brain damage which makes me unable to recognize people, or to speak meaningfully to people, or to live independently, but I have no terminal illness and I can live for a long time like this, then my wishes, if medically reasonable, for this and any additional illness, would be:

CPR-

Mechanical Ventilation-

Surgery/Dialysis/Blood Transfusion-

Artificial Nutrition and Fluid-

Simple diagnostic tests/antibiotics

SITUATION (E) If, in the opinion of my physician and two consultants, I have an incurable chronic illness which involves mental disability or physical suffering and ultimately causes death, and in addition I have an illness that is immediately life threatening but reversible, and I am temporarily unable to make decisions, then my wishes, if medically reasonable, would be:

CPR-

Mechanical Ventilation-

Surgery/Dialysis/Blood Transfusion-

Artificial Nutrition and Fluid-

Simple diagnostic tests/antibiotics

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SITUATION (F) If I am in my current state of health, (describe briefly) and then have, in the opinion of my physician and two consultants, a life threatening but reversible illness, and I am temporarily unable to make decisions, then my wishes, if medically reasonable, would be:

CPR-

Mechanical Ventilation-

Surgery/Dialysis/Blood Transfusion-

Artificial Nutrition and Fluid-

Simple diagnostic tests/antibiotics

Original: Emanuel LL, Emanuel EJ. (1989). The medical directive: A new comprehensive advance care document. JAMA, 261(22):3288-3293. PMID: 2636851. Adapted with permission from the author.

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Appendix B Agent Comfort Form Directions: Please indicate how true each of the following statements is for you over the past week by circling one number per line. C1. I feel comfortable exercising my role as a Healthcare Proxy for my Principal. Not at all A little bit Somewhat Quite a bit Very much 0 1 2 3 4 C2. I am concerned that I will not make a decision that reflects my Principal’s wishes if he/she is in a medical crisis. Not at all A little bit Somewhat Quite a bit Very much 0 1 2 3 4 C3. I believe that I understand my Principal’s preferences regarding medical treatments in times of crisis. Not at all A little bit Somewhat Quite a bit Very much 0 1 2 3 4 C4. I am not confident that I will be able to make important medical decisions for my Principal in a medical crisis. Not at all A little bit Somewhat Quite a bit Very much 0 1 2 3 4 C5. I feel adequately informed about my Principal’s healthcare preferences. Not at all A little bit Somewhat Quite a bit 0 1 2 3

Very much 4

C6. The responsibility I have for my Principal’s healthcare decisions is overwhelming. Not at all A little bit Somewhat Quite a bit Very much 0 1 2 3 4 DeltaQuest Foundation. (2002). Agent Comfort Questionnaire. All rights reserved. Used with permission from Carolyn Schwartz, Sc.D. President and Chief Scientist, DeltaQuest Foundation, Inc,. Concord, MA.

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Issue Framing and Personal Water Use: Prevention vs. Detection Emily L. Hause Saint Mary’s College of California Rachel M. Fellinger Saint Mary’s College of California

Abstract Numerous researchers have found a relationship between issue framing and choice behavior. Specifically, wording a choice option positively (in terms of what is to be gained) is likely to lead to risk aversion and the choice of a relatively certain option. Conversely, wording the same choice negatively (in terms of what is to be lost) is likely to lead to risk seeking and the choice of a risky option that may allow one to avoid loss. This “framing effect” has been replicated with a variety of materials and procedures, including health information. In their recent meta-analysis, Gallager and Updegraff (2012) raise several concerns with these applied findings. Overall, Gallagher and Updegraff’s review indicated some support for gain-framed messages in encouraging prevention and little impact of loss framed messages in encouraging detection. The present study attempts to address the methodological and measurement issues raised by Gallagher and Updegraff and examines the role of message framing in promoting water conservation. Participants read one scenario in either a loss or a gain frame condition and either a water use detecting or a water use preventing condition. Results indicate support for hypotheses. Participants reported a greater intention to participate in a program to prevent their excessive water use in a gain vs. loss frame (5.1, 4.0) and when reading a water use detection scenario, participants reported a greater intention to participate in a loss vs. gain (5.2, 4.2) frame (F1, 35 = 6.458, p < .05). Participants also perceived greater risk to the environment when reading a water use prevention scenario in a gain vs. loss frame (5.0, 4.3) and when reading a water use detection scenario, participants reported a greater risk to the environment in a loss vs. gain (6.1, 5.2) frame (F1, 35 = 6.047, p <.05).

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Keywords: issue framing, environmental action.

Beginning with Tversky and Kahneman (1981), numerous researchers have found a relationship between issue framing and choice behavior. Specifically, wording a choice option positively (in terms of what is to be gained) is likely to lead to risk aversion and the choice of a relatively certain option. Conversely, wording the same choice negatively (in terms of what is to be lost) is likely to lead to risk seeking and the choice of a risky option that may allow one to avoid loss. This “framing effect” has been replicated with a variety of materials and procedures. In the 1990s, researchers began using issue framing to examine the presentation of health information and the reaction of participants to gain- or loss-framed health messages. An example of a gain-framed health message would be, “Eating fruits and vegetables increases your chance of living a long healthy life.” The emphasis is on the benefits or advantages resulting from the behavior. An example of a loss-framed message would be, “If you do not eat your fruits and vegetables, you will increase your risk of disease and early death.” The emphasis is on the costs or disadvantages of the behavior. Prospect Theory supports the notion that frame will influence reactions to these messages, even though both versions of the message are encouraging the same behavior. That is, people tend to avoid taking risks when gains are salient (they are risk averse when reminded of the possibility of a long and healthy life) and they are more willing to take risks when losses are salient (they are risk seeking when reminded of the specter of disease and early death). Researchers in gain- and loss-framed messages in a health context have also investigated the influence of the type of health behavior that is being targeted – a prevention behavior or a detection behavior (Rothman & Salovey, 1997). Prevention and detection behaviors differ in the degree of proximal risk. A health screening behavior, such as a screening test for skin cancer, is perceived as “risky” because the individual might receive information that there is a threat to their health (Banks et al., 1995). A disease prevention behavior, such as wearing sun screen, is not perceived as risky. Therefore, engaging in a prevention behavior is a risk-averse option which should be preferred when a person is considering a gain or gain-framed message according to Prospect Theory. Engaging in a detection behavior (such as a health screening) is risk-seeking and should be preferred when a person is considering a loss or loss-framed message.

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Detweiler, Bedell, Salovey, Pronin and Rothman (1999) found evidence to indicate that gainframed messages are more effective when promoting illness-preventing (health affirming) behaviors and loss-framed messages are more effective when promoting illness-detecting (health screening) behaviors. These findings have been established for such disparate health practices as flu vaccinations, oral hygiene (Rothman, Martino, Bedell, Detweiler, & Salovey, 1999), and sunscreen use (Detweiler et al., 1999). In their recent meta-analysis, Gallager and Updegraff (2012) raise several concerns with these types of findings, however. The first of these is that studies on the impact of health messages differ widely in their dependent measures. Attitude measures are most common, followed by behavioral intentions and least common are actual behaviors. As may be expected, results vary depending on the measure of message persuasiveness employed. In some cases, different measures of persuasiveness are used in different experimental conditions. In addition, Gallager and Updegraff note the lack of similarity between typical prevention and detection behaviors. For example, the prevention behavior of flossing represents an ongoing, yet relatively minor effort. A dentist appointment to find out if you have a cavity occurs less often, but requires a much greater effort. Similarly, O’Keefe and Jensen (2009) highlight that findings change across the type of health behavior, with gain-framed messages being found to be particularly effective for promoting dental hygiene and loss framed messages for promoting breast cancer screening. Additionally, Detweiler et al. (1999) found no impact of attainability or attractiveness of the consequence presented. Overall, Gallagher and Updegraff’s review indicated some support for gain-framed messages in encouraging prevention and little impact of loss framed messages in encouraging detection. The present set of studies examines the role of issue framing or message framing in promoting political or environmental action. Decision making in a political context has long been thought to be impacted by demographic characteristics. However, Swank and Fahs (2011) found little role for race, class, or gender in peace activism. And when van Londen, Coenders, and Scheepers (2010), examined the impact of issue-framed messages in influencing reactions to ethnic-targeted school programs in the Netherlands, these researchers found that emphasizing costs increased levels of aversion. There is evidence, then, for the role of framing in influencing political attitudes over that of personal characteristics. Given the timeliness of the issue in

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California, in Fall 2012 we chose to examine hydraulic fracturing. Specifically, in an extension of Rothman et al. (1999), it was found that in the loss condition, pollution detecting messages were mildly more effective and in the gain condition, pollution preventing messages were somewhat more effective in promoting social action. Intentions to behave in terms of signing petitions were also found to correlate significantly with perceived risk (Hause & Cohen, 2014). Follow up study results varied a great deal depending on participant’s personal exposure to, and information about, hydraulic fracturing as well as their personal beliefs regarding the efficacy of petitions or protests in influencing large-scale oil development. Given the distance most subjects felt from this topic, a follow up study on environmental issues more closely impacted by personal behavior was designed. In a further extension of Rothman et al. (1999), this current study examines a set of direct behaviors more under the control of the research participants and of particular importance to Californians at the time of the data collection: the amount of water they personally use each day. In the face of a historic drought, Governor Brown in April 2015 established a goal of 25% reduction in use relative to previous year rates for domestic customers. Water utilities in California currently employ some positive effect strategies based on informational influence and normative influence. An example is providing direct information on the water-savings of selected target others, usually neighbors or comparable households. In addition, they have employed the behavioral economics concept of nudging by offering examples of simple water use reduction strategies. Nudging refers to setting up a choice architecture in a way that alters behavior in a predictable manner, without removing options or changing economic incentives (Thaler & Sunstein, 2003). At the time of data collection, water utilities had moved beyond the choice architecture and were applying direct economic incentives to homeowners to reduce water use. As incoming first year students living on campus, however, these participants are not directly responsible for their water bills and are therefore relatively unlikely to have been exposed to these messages. The current study is seeking to examine the impact on them of framed messages about water use. It is hypothesized that in the loss condition, water use detecting messages will be more effective and in the gain condition, water use preventing messages will be more effective in promoting social actions. Specifically, it is expected that when reading a water use prevention

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scenario, participants will report a greater intention to participate in an initiative to prevent excessive personal water use in a gain vs. loss frame and when reading a water use detection scenario, participants will report a greater intention to participate in an initiative tracking their personal water use when information is presented in a loss vs. gain frame.

Method

Participants

Thirty nine participants (34 females, 5 males) who were all first year students living oncampus at a small liberal arts college in California, read one scenario in either a loss or a gain frame condition and either a water use preventing or a water use detecting condition.

Materials

General scenario instructions offered participants the opportunity to agree to take part in a fictitious on-campus initiative designed to either avoid (prevention condition) or track (detection condition) excessive water use. In addition, consequences were either described in terms of action and its positive outcomes (gain frame) or in terms of inaction and its costs (loss frame). For example, the detection/gain scenario reads, “After this experiment, you will have an opportunity to sign up to take part in a College initiative to track personal water use on a daily basis. You will spend 8 hours documenting any water you use in your everyday life, which you will submit online. Three days later, you will receive an email asking you to confirm your identity and your support for detecting issues with your water use. As a college, if we detect issues with excessive water use, we can address the negative health and environmental consequences of our rapidly depleting water supplies.” The degree of perceived risk and participant’s intention to behave was measured via questionnaire. To address the methodological and measurement issues raised by Gallager and Updegraff (2012) for gain and loss framed messages, dependent measures were held constant across conditions as perceived risk and intention to participate in a fictitious campus water conservation initiative. To address concerns

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with the relative imbalance of time and effort often present between prevention and detection behaviors, both prevention and detection programs were described as involving an eight-hour commitment, online submission of data, and a follow up email.

Procedure

Scenarios were examined in a 2x2 between subjects design in a detection/gain, detection/loss, prevention/gain, or prevention/loss condition. After reading a cover sheet with a series of facts about the severity of the current drought in California, subjects were informed about the associated on-campus initiative as if it were a real opportunity for them. The degree of perceived personal and environmental risk, as well as behavioral intention to participate in the fictitious on-campus initiative, were measured on a 7-point scale from “not at all likely” to “extremely likely”. This scale and these items were adapted from Detweiler et al. (1999). Subjects were then debriefed and offered information on alternative actual mechanisms to help mitigate their water use.

Results

Participants read one scenario in either a loss or a gain frame condition and either a water use detecting or a water use preventing condition. The degree of risk in subjects’ choices was calculated with higher numbers indicating greater perceived risk. Results indicate support for hypotheses. Participants reported a greater intention to participate in a program to prevent their excessive water use in a gain vs. loss frame (5.1, 4.0) and when reading a water use detection scenario, participants reported a greater intention to participate in a loss vs. gain (5.2, 4.2) frame (F1, 35 = 6.458, p <.05). Participants also perceived greater risk to the environment when reading a water use prevention scenario in a gain vs. loss frame (5.0, 4.3) and when reading a water use detection scenario, participants reported a greater risk to the environment in a loss vs. gain (6.1, 5.2) frame (F1, 35 = 6.047, p < .05). Interestingly, in contrast very little risk to the individual was perceived when reading a water use prevention scenario in a gain vs. loss frame (4.1, 4.0) or

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when reading a water use detection scenario in a loss vs. gain (4.0, 3.9) frame (F1, 35 = .407, p > .05). Discussion

Findings from health research indicate that gain-framed messages are more effective when promoting illness-preventing (health affirming) behaviors and loss-framed messages are more effective when promoting illness-detecting (health screening) behaviors. Similarly, our findings indicate that when the challenge is prevention (avoiding excessive water use), people express a greater intent to behave given positively framed messages about gains and when the challenge is about detection or screening, there is more perceived risk, and people express a greater intent to behave when given negatively framed messages about losses. Perceived risk to the environment was quite high, averaging 4.7 in the prevention condition and 5.6 in the detection condition. However, personal risk was perceived as much lower in both the prevention (M = 4.1) and the detection (M = 4.0) conditions. One possible explanation for this difference can be found in applying the Personal Group Discrimination Discrepancy (PGDD). As Moghaddam, Stolkin, and Hutcheson (1997) illustrate, people process information differently on an individual versus a group level. Threats (such as a poor economy or disease) or positive influences (such as having supportive friends or increased computer efficiency) are expected to have a greater impact on a larger group than on an individual. In this way, relatively low perceived personal risk from a drought is consistent with a higher degree of perceived risk to the local environment. Current research is underway to replicate these findings and to extend them to other areas under the personal control of the participant. The present study attempts to address the methodological and measurement issues raised by Gallagher and Updegraff (2012) by examining intentions to behave and by keeping the effort needed for the behavior consistent across conditions. Limitations of the present study include the use of a fictitious initiative and an undergraduate student population. Also, no behavior change was examined. Although subjects did believe that they were being asked to commit to participating in the initiative and that the initiative was not fictitious, only intention to behave was measured. Future research should examine the impact of these messages on actual behavior

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change as well as a comparison of the relative efficacy of normative or informational influence and issue framing in persuasive messaging. An additional limitation of this study could be the knowledge a person has about the drought before reading the scenario. Current publicity about the importance of conserving water could have influenced their later intentions to join the initiative. The participant’s perceived risk from the drought could be evaluated before they read the scenario and then again after. Finally, in future research, social loafing could be examined with these scenarios as well. This could provide further information about how the individual will act when they perceive that the impact of water conservation is on the group (the College would receive a fine) versus more directly on themselves (your tuition costs will increase).

References

Banks, S. M., Salovey, P., Greener, S., Rothman, A. J., Moyer, A., Beauvais, J., & Epel, E. (1995). The effects of message framing on mammography utilization. Health Psychology, 14(2), 178-184. doi:10.1037/0278-6133.14.2.178 Detweiler, J. B., Bedell, B., Salovey, P., Pronin, E., & Rothman, A. J. (1999). Message framing and sunscreen use: Gain-framed messages motivate beach-goers. Health Psychology, 18(2), 189-196. doi:10.1037/0278-6133.18.2.189 Hause, E. L., & Cohen, E. (2014). Issue framing and political action. Poster presented at the annual meeting of the American Psychological Association. Gallager, K., & Updegraff, J. A. (2012). Health message framing effects on attitudes, intentions, and behavior: A meta-analytic review. Annals of Behavioral Medicine, 43(1), 101-116. doi: 10.1007/s12160-011-9308-7 Moghaddam, F. M., Stolkin, A. J., & Hutcheson, L. S. (1997). A generalized personal/group discrepancy: Testing the domain specificity of a perceived higher effect of events on one’s group than on oneself. Personality and Social Psychology Bulletin, 23, 743-750. doi: 10.1177/0146167297237007

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O’Keefe, D. J., & Jensen, J. D. (2009). The relative persuasiveness of gain-framed and lossframed messages for encouraging disease detection behaviors: A meta-analytic review. Journal of Communication, 59, 296–316. doi: 10.1111/j.1460-2466.2009.01417.x Rothman, A. J., Martino, S. C., Bedell, B., Detweiler, J. B., & Salovey, P. (1999). The systematic influence of gain- and loss-framed messages on interest in and use of different types of health behaviors. Personality and Social Psychology Bulletin, 25(11), 1355-1369. doi: 10.1177/0146167299259003 Rothman A. J., & Salovey P. (1997). Shaping perceptions to motivate healthy behavior: The role of message framing. Psychological Bulletin, 121, 3–19. doi: 10.1037/0033-2909.121.1.3 Swank, E., & Fahs, B. (2011). Pathways to political activism among Americans who have samesex sexual contact. Sexuality Research & Social Policy: A Journal of the NSRC, 8(2), 126-138. doi: 10.1007/s13178-011-0034-5 Thaler, R. H., & Sunstein, C. R. (2003). Libertarian paternalism. American Economic Review, 93, 175-180. Tversky, A, & Kahneman, D. (1981). The framing of decisions and the psychology of choice. Science, 211, 453–458. doi: 10.1126/science.7455683 van Londen, M., Coenders, M., & Scheepers, P. (2010). Effects of issue frames on aversion to ethnic-targeted school policies. Methodology: European Journal of Research Methods for the Behavioral and Social Sciences, 6(3), 96-106.

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Creativity as a Vehicle for Transformation and Social Change Joyous C. Bethel, Millersville University Leonora E. Foels, Millersville University Jennifer M. Frank, Millersville University Kathleen Walsh, Millersville University Karen Rice, Millersville University The Effect of Formal Clinical Training on Stigma Surrounding Transgender Individuals Kristen H. Cole, University of Indianapolis Mixalis Poulakis, University of Indianapolis Lori Nabors, University of Indianapolis Nidaa F. Kazi, University of Indianapolis Kai Shin (Josephine) Chu, University of Indianapolis Emma Carter, University of Indianapolis Renita Sengupta, University of Indianapolis

End of Life Discussions in the Community Elizabeth R. Houglan Adkins Issue Framing and Personal Water Use: Prevention vs. Detection Emily L. Hause, Saint Mary’s College of California Rachel M. Fellinger, Saint Mary’s College of California

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