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A novel process for integrating patient stories into patient education interventions: Incorporating lessons from theater arts
Patient Education and Counseling 88 (2012) 455–459
Contents lists available at SciVerse ScienceDirect
Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
A novel process for integrating patient stories into patient education interventions: Incorporating lessons from theater arts§ Gemmae M. Fix a,b,*, Thomas K. Houston a,c, Anna M. Barker a, Laura Wexler d, Natasha Cook a, Julie E. Volkman a, Barbara G. Bokhour a,b a
Center for Health Quality, Outcomes and Economic Research, Department of Veterans Affairs, Bedford, MA, USA Department of Health Policy and Management, Boston University School of Public Health, Boston, MA, USA c UMass Medical School, Worcester, MA, USA d The Stoop Storytelling Series, Baltimore, MD, USA b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 1 February 2012 Received in revised form 14 June 2012 Accepted 14 June 2012
Objective: Patient narratives, or stories, are an effective means of educating patients because they increase personal relevance and may reduce counter-arguing. However, such stories must seamlessly combine evidenced-based health information while being true to real patient experiences. The purpose of this paper is to describe the process of developing an educational intervention using African-American patients’ success stories controlling hypertension. Methods: We identified a process to address stories development challenges. Results: (1) To help identify story tellers, we conducted a literature review and subsequently streamlined the process of storyteller identification through screening and telephone interviews. (2) To better elicit stories, we consulted with experts in storytelling and incorporated principles from theater. (3) To select stories, we used intervention mapping to map the intervention to theory and key clinical concepts, and also engaged members of the target community to ensure scientific criteria and maintain authenticity. Conclusion: Using personal narratives as intervention requires weaving together science, theory and clinically sound content, while still being true to the art of storytelling. Through a careful process of identifying storytellers and story selection and drawing upon theater arts, creating stories for intervention can be streamlined while meeting the goals of authenticity and scientific soundness. Published by Elsevier Ireland Ltd.
Keywords: Patient education Hypertension Narrative medicine Audiovisual media African-American
1. Introduction Narrative communication, storytelling, has long been used for understanding patients’ experiences of illness [1–3]. More recently, researchers have begun to capitalize on the idea that people make sense of their lives through the stories they tell, by leveraging the power of stories as a critical means of promoting health information [4–6]. Narratives offer a unique way to share health information that is more meaningful to the general population than statistics [7]. Health researchers have used stories as an intervention for various conditions [8,9]. Many interventions
§ Drs. Fix, Houston, Bokhour, and Volkmans’ and Mrs. Barker and Cooks’ efforts were supported in part by the Department of Veterans Affairs, Veterans Health Administration, Office of Research and Development. The views expressed in this article are those of the authors and do not necessarily reflect the position or policy of the Department of Veterans Affairs or the United States government. * Corresponding author at: Center for Health Quality, Outcomes and Economic Research (152), ENRM Veterans Hospital, 200 Springs Road, Bedford, MA 01730, USA. Tel.: +1 781 687 3368; fax: +1 781 687 2227. E-mail address: gmfi[email protected] (G.M. Fix).
0738-3991/$ – see front matter . Published by Elsevier Ireland Ltd. http://dx.doi.org/10.1016/j.pec.2012.06.012
have focused on narratives to influence either health behavior [6,7,10,11] or belief changes [5]. For instance, stories about resisting drugs and alcohol are an effective way to prevent substance abuse [12]. Learning from the stories of others like you can be a catalyst for one’s own health behavior [4,8,13,14]. There are two complementary theoretical explanations for why storytelling may be an effective intervention tool: narrative theory and social cognitive theory. The basic science behind storytelling is narrative theory. Narrative theory asserts that stories change attitudes and behaviors by breaking down cognitive resistance through transportation and identification because they capitalize on commonly used ways of interacting, increase personal relevance and may reduce counter-arguing [4,15–17]. The audience is transported into the world of the storyteller and is emotionally and cognitively engaged in the narrative content. As a result, the audience may be more open and accepting of the information presented. While narrative theory tells us how people relate to stories, it alone does not help us understand the mechanisms of subsequent behavior changes. Thus, we turned to social cognitive theory. Storytelling integrates well and is complemented by tenets of
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social cognitive theory by providing a model for designing narratives as interventions [18]. In particular, self-efficacy, a key component of the theory, is enhanced by watching others tell stories of successful behavioral strategies [18,19]. Observational learning, or vicarious experience, is one important mechanism to increase self-efficacy [18] since behavior is inherently situated in social interaction, people change behavior based on watching others [19]. Thus, storytelling can be an effective strategy for sharing health promotion messages and a powerful intervention. However, the art and science of storytelling as intervention is challenging [9]. Developing effective stories is difficult, as they must seamlessly combine behavioral theory and evidenced-based health information while maintaining the authenticity of real patient experiences. Authenticity is critical for narrative engagement; if the sense of authenticity is breached, the effect of the story may be diminished [17]. Several strategies have been used to cultivate patient stories for health interventions, with varying success. The process can be laborious. In our prior work, we started with 50 videotaped interviews of actual patients, which were rated, and edited to create four interventional stories [10]. In work with Ashton et al. [9], we dissected real patients’ stories, rewove them into narratives matching project goals and used actors to retell the stories. In another study [8], we filmed real patients and edited footage to create a final video. While effective, these processes were time-consuming and did not always meet our criteria of authenticity or easily map to behavioral content to produce effective behavior change messaging. Understanding the challenges of stories creation, in our current study we aimed to reduce editing and improve story authenticity, in the hopes that this might also improve intervention effectiveness. This paper describes our novel approach to the development of the STORIES (Study to Optimize bp Reduction through Interactive Educational Stories) intervention. STORIES aims to improve hypertension control in African-American Veterans through viewing a DVD of stories from other African-American Veterans who have successfully controlled their hypertension. Our
goal was to develop a protocol for collecting patient stories about hypertension management and transform them into educational DVDs. Beginning with stories from African-American Veterans who successfully controlled their hypertension, we aimed to include stories that maintain fidelity to the storytellers’ stories, while emphasizing behaviors congruent with clinical recommendations for controlling hypertension. We identified three key challenges to efficiently and effectively creating story interventions: (1) how to efficiently identify good storytellers, (2) how to elicit good stories, and (3) how to select the best stories to effect behavioral change. Below we describe our process to address each of these challenges and our resulting STORIES intervention protocol. 2. Process of creating STORIES interventions To address each of the three challenges, we conducted an iterative process: (1) first, to help identify storytellers, we reviewed prior methods in the literature and refined the process; (2) next, to better elicit stories, we applied knowledge about storytelling from consulted with theater experts; (3) and finally, to select stories, we used intervention mapping. We describe each below. 2.1. Identifying storytellers To determine how to identify storytellers, we conducted a literature review and discussed prior story interventions with principal investigators to review approaches to identifying storytellers, the effort associated with these, and the ways in which these led to the identification of good, relevant storytellers. As stories are believed to work, in part through homophily (the extent to which listeners identify with the storytellers) [18], we examined how others defined the relevant community of storytellers. Given our focus on African-American Veterans, defining the relevant community involved discussions among the team about the
Table 1 Top seven tips for telling a compelling personal story in 7 min.a 1. Your story should matter. This doesn’t mean it has to involve a tragic, extreme, or earth-shattering event. It just means you have to know why it’s significant to you. As you’re thinking about which stories in your life seem worthy of telling publicly, ask yourself: What changed for me as a result of this incident or moment? What did I learn? What did it mean? We all have funny or surprising anecdotes we tell at parties. The difference between these and a compelling personal tale is the sense of significance. 2. Your story should aim for depth rather than breadth. Talking in detail about one night—or one person or one incident—that was significant in your life is much more satisfying for an audience than trying to cover a whole year, or your whole life (yikes). Resist the temptation to try to tell THE story of your life, and instead tell A story about your life. The narrower your focus, the richer tale you’ll be able to tell. Often it’s very effective to hone in on a turning point. 3. Your story should be about you. This doesn’t mean that your story shouldn’t involve other characters. It just means that you are the protagonist of the story; you must be the one who is facing a challenge or taking action. Even if the story seems like it’s about your mother or sister or friend, it’s really about your relationship with that person. You are the one in front of the audience; you’re the one they want to root for. Tell a personal tale. 4. Your story should be honest. Sure, memory is fragile and flawed, but the intention to be honest must be there. The power lies in the honesty of the stories–not only factual honesty, but also emotional honesty. Above all, ‘‘Be yourself.’’ Talk the way you talk. Show your personality. The audience responds to your authenticity, not to some idea of ‘‘the perfect storyteller.’’ 5. Your story should portray your emotional point of view at the time of the events. This means you want to remember what you were feeling at the time the story’s events took place. If you’re telling a story about something that happened when you were 11 or 17 or 24, take yourself back to that age. What did you understand about the world then? How did the experience feel to you at the time, as opposed to how it feels now? It may help to imagine your younger self as a different character or person than you are now. Help us to understand who that person was, and what the experience meant to him or her. (Sometimes, emotional stories told after you’ve had the gift of time can turn out to be very funny, or very sad, depending on your audience. Be prepared for either.) 6. Your story should contain specific sensory details that paint a picture: What song was playing when you first met your husband? What town are you from? What was the breed of that dog that bit you? What did your grandmother’s house smell like? When you offer specific, vivid, and authentic details about the people, places, and events in your story, you invite the audience to share your experience fully. 7. Your story should reveal something to you that you didn’t see before. Creating, shaping, and telling your story is a process of discovery. Often, you don’t fully understand an event or an incident in your life until you get enough distance from it to view it critically and put it into words. If you really engage in the process, you’ll be rewarded with greater insight into things that seemed mysterious or inexplicable at the time. This is one of the great powers of personal storytelling. Warning: This doesn’t mean there should be a moral or lesson to your story—that would be far too easy. Everyone has a story. What’s yours? a
Handout from workshop on effective storytelling; Laura Wexler’s The Stoop Storytelling Series. http://www.stoopstorytelling.com/.
I eat out a lot, but I order low salt dishes
It’s hard for me to move around, so I lift weights instead of walking I take things in stride
457
5
4
3
2
1
I tell him everything
I don’t cook with salt
I have to take my pill every day. I can’t skip.
One little pill makes a difference
I try to eat more fish
I take long walks
I reduced my drinking
My medications are right by my bed
I realized my blood pressure was high and I don’t feel anything.
I get a headache when my blood pressure is really high, but it’s also dangerous before I feel anything
I find my faith helps me
My high blood pressure is something that I will always have
Daily lived experience Symptoms Diet/nutrition Exercise Talk to your Watch Take medications doctor salt intake
Participant Clinical concepts
Prior story-based interventions used traditional qualitative research interviews to elicit stories. However, this approach may not produce authentic stories, reflect experiences of the community or capitalize on the inherently, open-ended, ‘‘bottom-up’’ nature of stories. Additionally, from our prior studies and consultations, we learned that editing reduces a story’s authenticity and visual and auditory cohesiveness. Ideal stories are authentic, organic, concise, and thereby reduce the need for editing. To refine our ability to elicit authentic stories, we sought insights from the theater arts, a discipline regarded for its storytelling abilities. Shows such as the Moth Radio Hour and Storycorps [19,20] are premised on similar non-fiction, firstperson narratives. Drawing from the theater arts is particularly relevant because of the strength of an oral tradition in the AfricanAmerican community. As the videos represent a performance of participant’s lives, stories and actions to control hypertension, we felt theater and performance arts was appropriate discipline to draw principles of use. To help us, we engaged Laura Wexler, cofounder and co-producer of The Stoop Storytelling Series [21], an event in which ordinary people tell a true, personal tale on a shared theme in front of a live audience. The STORIES team participated in Wexler’s three-hour workshop where she taught techniques to teach others to tell good stories, such as how to focus on meaningful experiences, shape those experiences into stories, and present them to an audience. In the workshop, we learned to apply the basic principles of personal storytelling to guide the storytellers to tell more powerful stories, and how to ‘‘interview for story,’’ by asking particular questions and prompting subjects for narrative responses. The goal was to emphasize the telling a personal tale, rather than answer interviewer’s questions as in a typical question and answer format. To enhance our stories with these qualities, we designed the screener, phone interviews and video interview guide using The Seven Principles of Storytelling (Table 1). ‘‘Good stories’’ can be identified, in part, by how closely they adhere to these principles of being honest, emotional, inclusion of sensory details, and depth of content. Wexler’s techniques teach ordinary people to tell a succinct story in seven minutes to a live audience. Because Stoop is
Table 2 Intervention map: elements of patient stories were mapped onto clinical concepts and theoretical constructs.
2.2. Eliciting stories
Behavioral cues
Factors from the dynamic model of hypertension control
relevance of place, race, ethnicity, socio-economic status, and Veteran status. The literature review of prior story collection methods showed a wide range of identifying storytellers, including the use of focus groups, content rating, and pilot testing. Determining that many of these methods were time and resource intensive, we sought to streamline the process and develop a recruitment strategy to maximize efficiency identifying compelling, persuasive storytellers. To minimize the number of videos to be reviewed and edited for the final DVD, we designed a screener and telephone interview to maximize identification of motivated participants with relevant stories capturing a range of hypertension management strategies. First, we sent a screener to African-American patients with controlled hypertension identified through administrative data. The screener asked participants to identify the two most important blood pressure control strategies they use and an ‘‘ah-ha’’ moment, a critical moment when they decided they needed to make a behavior change to gain hypertension control. A subset of screener respondents were selected for the telephone interview, where we asked participants to tell us about themselves and to elaborate on their hypertension control strategies. Based on both the content of their stories and overall inclination to tell stories with great detail and emotional content, we selected a subset to tell their stories on video.
Stress management Explanatory model: chronic
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G.M. Fix et al. / Patient Education and Counseling 88 (2012) 455–459
Fig. 1. Flowchart for identifying stories for inclusion in DVD intervention.
live, the stories are not editable. We want our stories to embody these same qualities, therefore limiting our need to edit. Storytellers selected for videotaping, will be coached first over the telephone and again at taping with prompts about storyenhancing details relative to their hypertension management. 2.3. Selecting stories To select the best stories from the larger corpus of stories told in the videos, we developed a process for integrating evidence based medicine and behavioral theory, while maintaining the story’s authenticity. To guide the stories selection and DVD content, intervention mapping [22] was used to combine clinically salient concepts, findings from our previous research on the ‘dynamic model of hypertension self-management behavior’ [23], narrative theory [24] and social cognitive theory [16]. Videotaped stories were edited for inclusion in the intervention. Ideal stories convey evidence-based hypertension reduction strategies, while remaining true to participants’ stories. To balance these competing goals, we created an intervention map (Table 2), a matrix which includes evidenced-based topics and key theoretical constructs, to track participant narratives. Intervention mapping is often used in the planning and development of health promotion interventions. In a series of steps, program planners identify an intervention, determine its implementation, and evaluate results. In each step, evidence must be shown that the design ‘‘maps’’ to the original concepts behind the intervention. Intervention mapping guided each phase of the stories selection process (Fig. 1) (screener, telephone interview, taping, selection of final stories). Based on
clinical evidence, we determined that: talking to your doctor, watching sodium intake, taking medications, diet/nutrition, and exercise are key features of successful hypertension control [25–31]. We also drew upon the ‘‘dynamic model of hypertension selfmanagement behavior,’’ developed in our prior study of patients with poorly controlled hypertension. Based on qualitative interviews we found that patients’ explanatory models (patients’ perceptions of the cause and course of hypertension, experiences of hypertension symptoms, and beliefs about the effectiveness of treatment), dailylived experiences (the life context in which hypertension is managed) and interactions with health care providers contributed to their hypertension management behaviors [23]. These components of hypertension management are considered dynamic in that they continually shape one another in relationship to behavior and may change over the course of a patient’s illness. Finally, to balance the theoretical and scientific angles of the stories, in all stages of the protocol development process we include members of the target community, African-American Veterans with hypertension. These Veterans consulted with the research team to further ensure story authenticity by providing commentary and insights about the stories. They represent the best source for ensuring that story characters and content not only reflect the real-life experiences of Veterans managing high blood pressure, but are highly emotionally and intellectually engaging. As a result, these Veterans helped identify stories that other African-American Veterans will identify with, to achieve homophily. For instance, one Veteran consultant identified a story with a ‘‘come to church moment’’ that other African-American Veterans managing hypertension would find real and powerful.
G.M. Fix et al. / Patient Education and Counseling 88 (2012) 455–459
3. Discussion and conclusion 3.1. Discussion Using personal narratives as intervention involves weaving together science based theory and clinically sound content, in an effective way, while still being true to the art of storytelling. To meet this challenge, we designed a protocol to identify, elicit, and select stories that are authentic and patient-driven while still providing important, scientifically based messages. To maintain scientific integrity, intervention mapping provides a mechanism to integrate theory and clinical constructs, critical aspects of study design [32]. To enhance the art of storytelling, we have gone beyond prior story-collection protocols by shifting our concept from conducting a conventional qualitative research interview to facilitating a story, in the tradition of theater. Conventional qualitative interviewing can yield useful information, but also creates fragmented footage that needs to be edited into a cohesive story, thereby losing the flow and authenticity of a real story. Our process potentially capitalizes on the effect of peers by using a relatively low cost, low intensity intervention [33–36]. 3.2. Conclusion Through a careful process of identifying storytellers and story selection and drawing upon theater arts, creating stories for intervention can be streamlined while meeting the goals of authenticity and scientific soundness. With the use of this protocol, we will test the effectiveness of stories in a randomized control trial of African-American Veterans with uncontrolled hypertension from three geographically diverse portions of the United States.
[10]
[11]
[12] [13]
[14]
[15]
[16]
[17]
[18] [19] [20] [21] [22] [23]
[24]
[25]
Conflict of interest statement
[26]
No conflict of interest has been declared by the authors. [27]
Acknowledgments
[28]
This study is funded by a research grant from the VA HSR&D, Project # IIR 10-132.
[29]
References
[30]
[1] Bury M. Illness narratives: fact or fiction. Sociol Health Illn 2001;23:263–85. [2] Haidet P, Kroll TL, Sharf BF. The complexity of patient participation: lessons learned from patients’ illness narratives. Patient Educ Couns 2006;62:323–9. [3] Lucius-Hoene G. Illness narratives and narrative medicine. Rehabilitation (Stuttg) 2008;47:90–7. [4] Kreuter MW, Holmes K, Hinyard LJ, Houston T, Woolley S, Green MC, et al. Narrative communication in cancer prevention and control: a framework to guide research and application. Ann Behav Med 2007;33:221–35. [5] Green MC, Brock TC. The role of transportation in the persuasiveness of public narratives. J Pers Soc Psychol 2000;79:701–21. [6] Hecht ML, Jackson RL, Ribeau SA. African American communication: exploring identity and culture. Lawrence Erlbaum Associates, Inc.: Mahwah, NJ; 2003. [7] Meisel ZF, Karlawish KJ. Narrative vs evidence-based medicine—and, not or. J Amer Med Assoc 2011;306:2022–3. [8] Houston TK, Allison JJ, Sussman M, Horn W, Holt CL, Trobaugh J, et al. Culturally appropriate storytelling to improve blood pressure. Ann Intern Med 2011;154:77–84. [9] Ashton CM, Houston TK, Williams JH, Larkin D, Trobaugh J, Crenshaw K, et al. A stories-based interactive DVD intended to help people with hypertension
[31]
[32]
[33]
[34] [35]
[36]
459
achieve blood pressure control through improved communication with their doctors. Patient Educ Couns 2009;79:245–50. Houston TK, Cherrington A, Coley HL, Robinson KM, Trobaugh JA, Williams JH, et al. The art and science of patient storytelling-harnessing narrative communication for behavioral interventions: the ACCE project. J Health Commun 2011;16:686–97. Houston TK, Allison JJ, Sussman M, Horn W, Holt CL, Trobaugh J, et al. Culturally appropriate storytelling to improve blood pressure: a randomized trial. Ann Intern Med 2011;154:77–84. Hecht ML, Graham JW, Elek E. The drug resistance strategies intervention: program effects on substance use. Health Commun 2006;20:267–76. Houston T, Robinson K, Berner E, Panjamapirom A, Fouad M, Partridge E. Bridging the digital divide: feasibility of training community health advisors to use the internet for health outreach. In: HICSS 2006 Proceedings; 2006. p. 88c–97c. Ashton CM, Haidet P, Paterniti DA, Collins TC, Gordon HS, O’Malley K, et al. Racial and ethnic disparities in the use of health services: bias, preferences, or poor communication. J Gen Intern Med 2003;18:146–52. Guttman N, Gesser-Edlesburg A, Israelashvili M. The paradox of realism and authenticity in entertainment-education: a study of adolescents’ views about anti-drug use dramas; 2008. Busselle R, Bilandzic H, Fictionality H. Perceived realism in experiencing stories: a model of narrative comprehension and engagement. Commun Theor 2008;18:255–80. Hinyard LJ, Kreuter MW. Using narrative communication as a tool for health behavior change: a conceptual, theoretical and empirical overview. Health Educ Behav 2007;33:777–92. Bandura A. Social cognitive theory: an agentic perspective. Annu Rev Psychol 2001;52:1–26. Bandura A. Health promotion by social cognitive means. Health Educ Behav 2004;31:143–64. The Moth Radio Hour. http://themoth.org/radio; 2009. StoryCorps. http://storycorps.org/; 2011. Wexler L, Henkin J, Subelsky M, Dellon G, Henkin A. The Stoop Storytelling Series; 2012. Bartholomew LK, Parcel GS, Kok G, Gottlieb NH, Fernandez ME. Planning health promotion programs: an intervention mapping approach. San Francisco, CA: Jossey-Bass; 2011. Bokhour BG, Cohn ES, Corte´s DE, Solomon JL, Fix GM, Elwy AR, et al. The role of patients’ explanatory models and daily-lived experience in hypertension selfmanagement. J Gen Intern Med, in press. McAdams DP. The stories we live by Personal myths and the making of the self. New York: William Morrow & Co.; 1993. Taylor RS, Ashton KE, Moxham T, Hooper L, Ebrahim S. Reduced dietary salt for the prevention of cardiovascular disease. Cochrane Database of Systematic Reviews 2011;7. CDC. Vital signs: prevalence, treatment, and control of hypertension – United States, 1999–2002 and 2005–2008. Morb Mortal Wkly Rep 2011;60. Egan BM, Zhao Y, Axon RN. US trends in prevalence, awareness, treatment, and control of hypertension, 1988–2008. J Amer Med Assoc 2010;303: 2043–50. Sarafidis PA, Bakris GL. State of hypertension management in the United States: confluence of risk factors and the prevalence of resistant hypertension. J Clin Hypertens 2008;10:130–9. Ostchega Y, Yoon S, Hughes J, Louis T. Hypertension awareness, treatment, and control – continued disparities in adults: United States, 2005–2006. NCHS data brief http://www.cdc.gov/nchs/data/databriefs/db03.pdf; 2008. Dickinson HO, Mason JM, Nicolson DJ, Campbell F, Beyer FR, Cook JV, et al. Lifestyle interventions to reduce raised blood pressure: a systematic review of randomized controlled trials. J Hypertens 2006;24:215–33. Sacks FM, Svetkey LP, Vollmer WM, Appel LJ, Bray GA, Harsha D, et al. Effects on blood pressure of reduced dietary sodium and the dietary approaches to stop hypertension (DASH) diet. N Engl J Med 2001;344:3–10. Evans BC, Coon DW, Ume E. Use of theoretical frameworks as a pragmatic guide for mixed methods studies. J Mix Method Res 2011;5: 276–92. Heisler M, Piette JD. I help you, and you help me—facilitated telephone peer support among patients with diabetes. Diabetes Educ 2005;31:869–79. Heisler M, Vijan S, Makki F, Piette JD. Diabetes control with reciprocal peer support versus nurse care management: a randomized trial. Ann Intern Med 2010;153. 507-W182. Perez-Escamilla R, Hromi-Fiedler A, Vega-Lopez S, Bermudez-Millan A, Segura-Perez S. Impact of peer nutrition education on dietary behaviors and health outcomes among Latinos: a systematic literature review. J Nutr Educ Behav 2008;40:208–25.
Contents lists available at SciVerse ScienceDirect
Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
A novel process for integrating patient stories into patient education interventions: Incorporating lessons from theater arts§ Gemmae M. Fix a,b,*, Thomas K. Houston a,c, Anna M. Barker a, Laura Wexler d, Natasha Cook a, Julie E. Volkman a, Barbara G. Bokhour a,b a
Center for Health Quality, Outcomes and Economic Research, Department of Veterans Affairs, Bedford, MA, USA Department of Health Policy and Management, Boston University School of Public Health, Boston, MA, USA c UMass Medical School, Worcester, MA, USA d The Stoop Storytelling Series, Baltimore, MD, USA b
A R T I C L E I N F O
A B S T R A C T
Article history: Received 1 February 2012 Received in revised form 14 June 2012 Accepted 14 June 2012
Objective: Patient narratives, or stories, are an effective means of educating patients because they increase personal relevance and may reduce counter-arguing. However, such stories must seamlessly combine evidenced-based health information while being true to real patient experiences. The purpose of this paper is to describe the process of developing an educational intervention using African-American patients’ success stories controlling hypertension. Methods: We identified a process to address stories development challenges. Results: (1) To help identify story tellers, we conducted a literature review and subsequently streamlined the process of storyteller identification through screening and telephone interviews. (2) To better elicit stories, we consulted with experts in storytelling and incorporated principles from theater. (3) To select stories, we used intervention mapping to map the intervention to theory and key clinical concepts, and also engaged members of the target community to ensure scientific criteria and maintain authenticity. Conclusion: Using personal narratives as intervention requires weaving together science, theory and clinically sound content, while still being true to the art of storytelling. Through a careful process of identifying storytellers and story selection and drawing upon theater arts, creating stories for intervention can be streamlined while meeting the goals of authenticity and scientific soundness. Published by Elsevier Ireland Ltd.
Keywords: Patient education Hypertension Narrative medicine Audiovisual media African-American
1. Introduction Narrative communication, storytelling, has long been used for understanding patients’ experiences of illness [1–3]. More recently, researchers have begun to capitalize on the idea that people make sense of their lives through the stories they tell, by leveraging the power of stories as a critical means of promoting health information [4–6]. Narratives offer a unique way to share health information that is more meaningful to the general population than statistics [7]. Health researchers have used stories as an intervention for various conditions [8,9]. Many interventions
§ Drs. Fix, Houston, Bokhour, and Volkmans’ and Mrs. Barker and Cooks’ efforts were supported in part by the Department of Veterans Affairs, Veterans Health Administration, Office of Research and Development. The views expressed in this article are those of the authors and do not necessarily reflect the position or policy of the Department of Veterans Affairs or the United States government. * Corresponding author at: Center for Health Quality, Outcomes and Economic Research (152), ENRM Veterans Hospital, 200 Springs Road, Bedford, MA 01730, USA. Tel.: +1 781 687 3368; fax: +1 781 687 2227. E-mail address: gmfi[email protected] (G.M. Fix).
0738-3991/$ – see front matter . Published by Elsevier Ireland Ltd. http://dx.doi.org/10.1016/j.pec.2012.06.012
have focused on narratives to influence either health behavior [6,7,10,11] or belief changes [5]. For instance, stories about resisting drugs and alcohol are an effective way to prevent substance abuse [12]. Learning from the stories of others like you can be a catalyst for one’s own health behavior [4,8,13,14]. There are two complementary theoretical explanations for why storytelling may be an effective intervention tool: narrative theory and social cognitive theory. The basic science behind storytelling is narrative theory. Narrative theory asserts that stories change attitudes and behaviors by breaking down cognitive resistance through transportation and identification because they capitalize on commonly used ways of interacting, increase personal relevance and may reduce counter-arguing [4,15–17]. The audience is transported into the world of the storyteller and is emotionally and cognitively engaged in the narrative content. As a result, the audience may be more open and accepting of the information presented. While narrative theory tells us how people relate to stories, it alone does not help us understand the mechanisms of subsequent behavior changes. Thus, we turned to social cognitive theory. Storytelling integrates well and is complemented by tenets of
G.M. Fix et al. / Patient Education and Counseling 88 (2012) 455–459
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social cognitive theory by providing a model for designing narratives as interventions [18]. In particular, self-efficacy, a key component of the theory, is enhanced by watching others tell stories of successful behavioral strategies [18,19]. Observational learning, or vicarious experience, is one important mechanism to increase self-efficacy [18] since behavior is inherently situated in social interaction, people change behavior based on watching others [19]. Thus, storytelling can be an effective strategy for sharing health promotion messages and a powerful intervention. However, the art and science of storytelling as intervention is challenging [9]. Developing effective stories is difficult, as they must seamlessly combine behavioral theory and evidenced-based health information while maintaining the authenticity of real patient experiences. Authenticity is critical for narrative engagement; if the sense of authenticity is breached, the effect of the story may be diminished [17]. Several strategies have been used to cultivate patient stories for health interventions, with varying success. The process can be laborious. In our prior work, we started with 50 videotaped interviews of actual patients, which were rated, and edited to create four interventional stories [10]. In work with Ashton et al. [9], we dissected real patients’ stories, rewove them into narratives matching project goals and used actors to retell the stories. In another study [8], we filmed real patients and edited footage to create a final video. While effective, these processes were time-consuming and did not always meet our criteria of authenticity or easily map to behavioral content to produce effective behavior change messaging. Understanding the challenges of stories creation, in our current study we aimed to reduce editing and improve story authenticity, in the hopes that this might also improve intervention effectiveness. This paper describes our novel approach to the development of the STORIES (Study to Optimize bp Reduction through Interactive Educational Stories) intervention. STORIES aims to improve hypertension control in African-American Veterans through viewing a DVD of stories from other African-American Veterans who have successfully controlled their hypertension. Our
goal was to develop a protocol for collecting patient stories about hypertension management and transform them into educational DVDs. Beginning with stories from African-American Veterans who successfully controlled their hypertension, we aimed to include stories that maintain fidelity to the storytellers’ stories, while emphasizing behaviors congruent with clinical recommendations for controlling hypertension. We identified three key challenges to efficiently and effectively creating story interventions: (1) how to efficiently identify good storytellers, (2) how to elicit good stories, and (3) how to select the best stories to effect behavioral change. Below we describe our process to address each of these challenges and our resulting STORIES intervention protocol. 2. Process of creating STORIES interventions To address each of the three challenges, we conducted an iterative process: (1) first, to help identify storytellers, we reviewed prior methods in the literature and refined the process; (2) next, to better elicit stories, we applied knowledge about storytelling from consulted with theater experts; (3) and finally, to select stories, we used intervention mapping. We describe each below. 2.1. Identifying storytellers To determine how to identify storytellers, we conducted a literature review and discussed prior story interventions with principal investigators to review approaches to identifying storytellers, the effort associated with these, and the ways in which these led to the identification of good, relevant storytellers. As stories are believed to work, in part through homophily (the extent to which listeners identify with the storytellers) [18], we examined how others defined the relevant community of storytellers. Given our focus on African-American Veterans, defining the relevant community involved discussions among the team about the
Table 1 Top seven tips for telling a compelling personal story in 7 min.a 1. Your story should matter. This doesn’t mean it has to involve a tragic, extreme, or earth-shattering event. It just means you have to know why it’s significant to you. As you’re thinking about which stories in your life seem worthy of telling publicly, ask yourself: What changed for me as a result of this incident or moment? What did I learn? What did it mean? We all have funny or surprising anecdotes we tell at parties. The difference between these and a compelling personal tale is the sense of significance. 2. Your story should aim for depth rather than breadth. Talking in detail about one night—or one person or one incident—that was significant in your life is much more satisfying for an audience than trying to cover a whole year, or your whole life (yikes). Resist the temptation to try to tell THE story of your life, and instead tell A story about your life. The narrower your focus, the richer tale you’ll be able to tell. Often it’s very effective to hone in on a turning point. 3. Your story should be about you. This doesn’t mean that your story shouldn’t involve other characters. It just means that you are the protagonist of the story; you must be the one who is facing a challenge or taking action. Even if the story seems like it’s about your mother or sister or friend, it’s really about your relationship with that person. You are the one in front of the audience; you’re the one they want to root for. Tell a personal tale. 4. Your story should be honest. Sure, memory is fragile and flawed, but the intention to be honest must be there. The power lies in the honesty of the stories–not only factual honesty, but also emotional honesty. Above all, ‘‘Be yourself.’’ Talk the way you talk. Show your personality. The audience responds to your authenticity, not to some idea of ‘‘the perfect storyteller.’’ 5. Your story should portray your emotional point of view at the time of the events. This means you want to remember what you were feeling at the time the story’s events took place. If you’re telling a story about something that happened when you were 11 or 17 or 24, take yourself back to that age. What did you understand about the world then? How did the experience feel to you at the time, as opposed to how it feels now? It may help to imagine your younger self as a different character or person than you are now. Help us to understand who that person was, and what the experience meant to him or her. (Sometimes, emotional stories told after you’ve had the gift of time can turn out to be very funny, or very sad, depending on your audience. Be prepared for either.) 6. Your story should contain specific sensory details that paint a picture: What song was playing when you first met your husband? What town are you from? What was the breed of that dog that bit you? What did your grandmother’s house smell like? When you offer specific, vivid, and authentic details about the people, places, and events in your story, you invite the audience to share your experience fully. 7. Your story should reveal something to you that you didn’t see before. Creating, shaping, and telling your story is a process of discovery. Often, you don’t fully understand an event or an incident in your life until you get enough distance from it to view it critically and put it into words. If you really engage in the process, you’ll be rewarded with greater insight into things that seemed mysterious or inexplicable at the time. This is one of the great powers of personal storytelling. Warning: This doesn’t mean there should be a moral or lesson to your story—that would be far too easy. Everyone has a story. What’s yours? a
Handout from workshop on effective storytelling; Laura Wexler’s The Stoop Storytelling Series. http://www.stoopstorytelling.com/.
I eat out a lot, but I order low salt dishes
It’s hard for me to move around, so I lift weights instead of walking I take things in stride
457
5
4
3
2
1
I tell him everything
I don’t cook with salt
I have to take my pill every day. I can’t skip.
One little pill makes a difference
I try to eat more fish
I take long walks
I reduced my drinking
My medications are right by my bed
I realized my blood pressure was high and I don’t feel anything.
I get a headache when my blood pressure is really high, but it’s also dangerous before I feel anything
I find my faith helps me
My high blood pressure is something that I will always have
Daily lived experience Symptoms Diet/nutrition Exercise Talk to your Watch Take medications doctor salt intake
Participant Clinical concepts
Prior story-based interventions used traditional qualitative research interviews to elicit stories. However, this approach may not produce authentic stories, reflect experiences of the community or capitalize on the inherently, open-ended, ‘‘bottom-up’’ nature of stories. Additionally, from our prior studies and consultations, we learned that editing reduces a story’s authenticity and visual and auditory cohesiveness. Ideal stories are authentic, organic, concise, and thereby reduce the need for editing. To refine our ability to elicit authentic stories, we sought insights from the theater arts, a discipline regarded for its storytelling abilities. Shows such as the Moth Radio Hour and Storycorps [19,20] are premised on similar non-fiction, firstperson narratives. Drawing from the theater arts is particularly relevant because of the strength of an oral tradition in the AfricanAmerican community. As the videos represent a performance of participant’s lives, stories and actions to control hypertension, we felt theater and performance arts was appropriate discipline to draw principles of use. To help us, we engaged Laura Wexler, cofounder and co-producer of The Stoop Storytelling Series [21], an event in which ordinary people tell a true, personal tale on a shared theme in front of a live audience. The STORIES team participated in Wexler’s three-hour workshop where she taught techniques to teach others to tell good stories, such as how to focus on meaningful experiences, shape those experiences into stories, and present them to an audience. In the workshop, we learned to apply the basic principles of personal storytelling to guide the storytellers to tell more powerful stories, and how to ‘‘interview for story,’’ by asking particular questions and prompting subjects for narrative responses. The goal was to emphasize the telling a personal tale, rather than answer interviewer’s questions as in a typical question and answer format. To enhance our stories with these qualities, we designed the screener, phone interviews and video interview guide using The Seven Principles of Storytelling (Table 1). ‘‘Good stories’’ can be identified, in part, by how closely they adhere to these principles of being honest, emotional, inclusion of sensory details, and depth of content. Wexler’s techniques teach ordinary people to tell a succinct story in seven minutes to a live audience. Because Stoop is
Table 2 Intervention map: elements of patient stories were mapped onto clinical concepts and theoretical constructs.
2.2. Eliciting stories
Behavioral cues
Factors from the dynamic model of hypertension control
relevance of place, race, ethnicity, socio-economic status, and Veteran status. The literature review of prior story collection methods showed a wide range of identifying storytellers, including the use of focus groups, content rating, and pilot testing. Determining that many of these methods were time and resource intensive, we sought to streamline the process and develop a recruitment strategy to maximize efficiency identifying compelling, persuasive storytellers. To minimize the number of videos to be reviewed and edited for the final DVD, we designed a screener and telephone interview to maximize identification of motivated participants with relevant stories capturing a range of hypertension management strategies. First, we sent a screener to African-American patients with controlled hypertension identified through administrative data. The screener asked participants to identify the two most important blood pressure control strategies they use and an ‘‘ah-ha’’ moment, a critical moment when they decided they needed to make a behavior change to gain hypertension control. A subset of screener respondents were selected for the telephone interview, where we asked participants to tell us about themselves and to elaborate on their hypertension control strategies. Based on both the content of their stories and overall inclination to tell stories with great detail and emotional content, we selected a subset to tell their stories on video.
Stress management Explanatory model: chronic
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Fig. 1. Flowchart for identifying stories for inclusion in DVD intervention.
live, the stories are not editable. We want our stories to embody these same qualities, therefore limiting our need to edit. Storytellers selected for videotaping, will be coached first over the telephone and again at taping with prompts about storyenhancing details relative to their hypertension management. 2.3. Selecting stories To select the best stories from the larger corpus of stories told in the videos, we developed a process for integrating evidence based medicine and behavioral theory, while maintaining the story’s authenticity. To guide the stories selection and DVD content, intervention mapping [22] was used to combine clinically salient concepts, findings from our previous research on the ‘dynamic model of hypertension self-management behavior’ [23], narrative theory [24] and social cognitive theory [16]. Videotaped stories were edited for inclusion in the intervention. Ideal stories convey evidence-based hypertension reduction strategies, while remaining true to participants’ stories. To balance these competing goals, we created an intervention map (Table 2), a matrix which includes evidenced-based topics and key theoretical constructs, to track participant narratives. Intervention mapping is often used in the planning and development of health promotion interventions. In a series of steps, program planners identify an intervention, determine its implementation, and evaluate results. In each step, evidence must be shown that the design ‘‘maps’’ to the original concepts behind the intervention. Intervention mapping guided each phase of the stories selection process (Fig. 1) (screener, telephone interview, taping, selection of final stories). Based on
clinical evidence, we determined that: talking to your doctor, watching sodium intake, taking medications, diet/nutrition, and exercise are key features of successful hypertension control [25–31]. We also drew upon the ‘‘dynamic model of hypertension selfmanagement behavior,’’ developed in our prior study of patients with poorly controlled hypertension. Based on qualitative interviews we found that patients’ explanatory models (patients’ perceptions of the cause and course of hypertension, experiences of hypertension symptoms, and beliefs about the effectiveness of treatment), dailylived experiences (the life context in which hypertension is managed) and interactions with health care providers contributed to their hypertension management behaviors [23]. These components of hypertension management are considered dynamic in that they continually shape one another in relationship to behavior and may change over the course of a patient’s illness. Finally, to balance the theoretical and scientific angles of the stories, in all stages of the protocol development process we include members of the target community, African-American Veterans with hypertension. These Veterans consulted with the research team to further ensure story authenticity by providing commentary and insights about the stories. They represent the best source for ensuring that story characters and content not only reflect the real-life experiences of Veterans managing high blood pressure, but are highly emotionally and intellectually engaging. As a result, these Veterans helped identify stories that other African-American Veterans will identify with, to achieve homophily. For instance, one Veteran consultant identified a story with a ‘‘come to church moment’’ that other African-American Veterans managing hypertension would find real and powerful.
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3. Discussion and conclusion 3.1. Discussion Using personal narratives as intervention involves weaving together science based theory and clinically sound content, in an effective way, while still being true to the art of storytelling. To meet this challenge, we designed a protocol to identify, elicit, and select stories that are authentic and patient-driven while still providing important, scientifically based messages. To maintain scientific integrity, intervention mapping provides a mechanism to integrate theory and clinical constructs, critical aspects of study design [32]. To enhance the art of storytelling, we have gone beyond prior story-collection protocols by shifting our concept from conducting a conventional qualitative research interview to facilitating a story, in the tradition of theater. Conventional qualitative interviewing can yield useful information, but also creates fragmented footage that needs to be edited into a cohesive story, thereby losing the flow and authenticity of a real story. Our process potentially capitalizes on the effect of peers by using a relatively low cost, low intensity intervention [33–36]. 3.2. Conclusion Through a careful process of identifying storytellers and story selection and drawing upon theater arts, creating stories for intervention can be streamlined while meeting the goals of authenticity and scientific soundness. With the use of this protocol, we will test the effectiveness of stories in a randomized control trial of African-American Veterans with uncontrolled hypertension from three geographically diverse portions of the United States.
[10]
[11]
[12] [13]
[14]
[15]
[16]
[17]
[18] [19] [20] [21] [22] [23]
[24]
[25]
Conflict of interest statement
[26]
No conflict of interest has been declared by the authors. [27]
Acknowledgments
[28]
This study is funded by a research grant from the VA HSR&D, Project # IIR 10-132.
[29]
References
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[1] Bury M. Illness narratives: fact or fiction. Sociol Health Illn 2001;23:263–85. [2] Haidet P, Kroll TL, Sharf BF. The complexity of patient participation: lessons learned from patients’ illness narratives. Patient Educ Couns 2006;62:323–9. [3] Lucius-Hoene G. Illness narratives and narrative medicine. Rehabilitation (Stuttg) 2008;47:90–7. [4] Kreuter MW, Holmes K, Hinyard LJ, Houston T, Woolley S, Green MC, et al. Narrative communication in cancer prevention and control: a framework to guide research and application. Ann Behav Med 2007;33:221–35. [5] Green MC, Brock TC. The role of transportation in the persuasiveness of public narratives. J Pers Soc Psychol 2000;79:701–21. [6] Hecht ML, Jackson RL, Ribeau SA. African American communication: exploring identity and culture. Lawrence Erlbaum Associates, Inc.: Mahwah, NJ; 2003. [7] Meisel ZF, Karlawish KJ. Narrative vs evidence-based medicine—and, not or. J Amer Med Assoc 2011;306:2022–3. [8] Houston TK, Allison JJ, Sussman M, Horn W, Holt CL, Trobaugh J, et al. Culturally appropriate storytelling to improve blood pressure. Ann Intern Med 2011;154:77–84. [9] Ashton CM, Houston TK, Williams JH, Larkin D, Trobaugh J, Crenshaw K, et al. A stories-based interactive DVD intended to help people with hypertension
[31]
[32]
[33]
[34] [35]
[36]
459
achieve blood pressure control through improved communication with their doctors. Patient Educ Couns 2009;79:245–50. Houston TK, Cherrington A, Coley HL, Robinson KM, Trobaugh JA, Williams JH, et al. The art and science of patient storytelling-harnessing narrative communication for behavioral interventions: the ACCE project. J Health Commun 2011;16:686–97. Houston TK, Allison JJ, Sussman M, Horn W, Holt CL, Trobaugh J, et al. Culturally appropriate storytelling to improve blood pressure: a randomized trial. Ann Intern Med 2011;154:77–84. Hecht ML, Graham JW, Elek E. The drug resistance strategies intervention: program effects on substance use. Health Commun 2006;20:267–76. Houston T, Robinson K, Berner E, Panjamapirom A, Fouad M, Partridge E. Bridging the digital divide: feasibility of training community health advisors to use the internet for health outreach. In: HICSS 2006 Proceedings; 2006. p. 88c–97c. Ashton CM, Haidet P, Paterniti DA, Collins TC, Gordon HS, O’Malley K, et al. Racial and ethnic disparities in the use of health services: bias, preferences, or poor communication. J Gen Intern Med 2003;18:146–52. Guttman N, Gesser-Edlesburg A, Israelashvili M. The paradox of realism and authenticity in entertainment-education: a study of adolescents’ views about anti-drug use dramas; 2008. Busselle R, Bilandzic H, Fictionality H. Perceived realism in experiencing stories: a model of narrative comprehension and engagement. Commun Theor 2008;18:255–80. Hinyard LJ, Kreuter MW. Using narrative communication as a tool for health behavior change: a conceptual, theoretical and empirical overview. Health Educ Behav 2007;33:777–92. Bandura A. Social cognitive theory: an agentic perspective. Annu Rev Psychol 2001;52:1–26. Bandura A. Health promotion by social cognitive means. Health Educ Behav 2004;31:143–64. The Moth Radio Hour. http://themoth.org/radio; 2009. StoryCorps. http://storycorps.org/; 2011. Wexler L, Henkin J, Subelsky M, Dellon G, Henkin A. The Stoop Storytelling Series; 2012. Bartholomew LK, Parcel GS, Kok G, Gottlieb NH, Fernandez ME. Planning health promotion programs: an intervention mapping approach. San Francisco, CA: Jossey-Bass; 2011. Bokhour BG, Cohn ES, Corte´s DE, Solomon JL, Fix GM, Elwy AR, et al. The role of patients’ explanatory models and daily-lived experience in hypertension selfmanagement. J Gen Intern Med, in press. McAdams DP. The stories we live by Personal myths and the making of the self. New York: William Morrow & Co.; 1993. Taylor RS, Ashton KE, Moxham T, Hooper L, Ebrahim S. Reduced dietary salt for the prevention of cardiovascular disease. Cochrane Database of Systematic Reviews 2011;7. CDC. Vital signs: prevalence, treatment, and control of hypertension – United States, 1999–2002 and 2005–2008. Morb Mortal Wkly Rep 2011;60. Egan BM, Zhao Y, Axon RN. US trends in prevalence, awareness, treatment, and control of hypertension, 1988–2008. J Amer Med Assoc 2010;303: 2043–50. Sarafidis PA, Bakris GL. State of hypertension management in the United States: confluence of risk factors and the prevalence of resistant hypertension. J Clin Hypertens 2008;10:130–9. Ostchega Y, Yoon S, Hughes J, Louis T. Hypertension awareness, treatment, and control – continued disparities in adults: United States, 2005–2006. NCHS data brief http://www.cdc.gov/nchs/data/databriefs/db03.pdf; 2008. Dickinson HO, Mason JM, Nicolson DJ, Campbell F, Beyer FR, Cook JV, et al. Lifestyle interventions to reduce raised blood pressure: a systematic review of randomized controlled trials. J Hypertens 2006;24:215–33. Sacks FM, Svetkey LP, Vollmer WM, Appel LJ, Bray GA, Harsha D, et al. Effects on blood pressure of reduced dietary sodium and the dietary approaches to stop hypertension (DASH) diet. N Engl J Med 2001;344:3–10. Evans BC, Coon DW, Ume E. Use of theoretical frameworks as a pragmatic guide for mixed methods studies. J Mix Method Res 2011;5: 276–92. Heisler M, Piette JD. I help you, and you help me—facilitated telephone peer support among patients with diabetes. Diabetes Educ 2005;31:869–79. Heisler M, Vijan S, Makki F, Piette JD. Diabetes control with reciprocal peer support versus nurse care management: a randomized trial. Ann Intern Med 2010;153. 507-W182. Perez-Escamilla R, Hromi-Fiedler A, Vega-Lopez S, Bermudez-Millan A, Segura-Perez S. Impact of peer nutrition education on dietary behaviors and health outcomes among Latinos: a systematic literature review. J Nutr Educ Behav 2008;40:208–25.