An underlying cause of stroke, heart attacks, and other vascular disease, hypertension is a prototypical difficult-to-manage chronic disease.1–3 Despite great advances in medical management of hypertension, disparities remain with adverse consequences significantly higher among African Americans.4 Hypertension is best managed when patients self-monitor their blood pressure (BP), take their medications consistently, adjust their diet and physical activity, and communicate with their providers any issues related to treatment side effects.5 A disproportionate number of patients with poorly controlled BP are African American.6–8 Behavioral interventions designed to educate and motivate may fail if they do not fully address cultural or ethnic experiences as part of the full continuum of patient perspectives, thus contributing to continued disparities in poor control and health outcomes in African American populations.
The reasons for disparities and difficulties in patient engagement in hypertension self-management behaviors (eg, medication adherence, healthy behaviors, etc.) are legion.7,9 Behavior change theories suggest that increasing personal relevance of a disease can reduce counter-arguing and support positive disease self-management.10 Communication theory suggests that engaging patients on an emotional level can enhance attention and cognitive processing of information.11 Therefore, to combat cognitive resistance to behavior change, a health behavior change intervention should engage patients11 and have personal relevance,12 particularly for hypertension which is asymptomatic to most and only connected to poor outcomes after many years. To enhance personal relevance, narrative communication (storytelling) may be particularly effective in African American communities, which have a strong storytelling tradition.13,14
For minority patients, researchers have begun to capitalize on the idea that narrative communication, hearing and reacting to the stories of others like oneself, can be a catalyst for health behavior change.10,15–20 Narrative theory has demonstrated that it is through stories that we make meaning of our lives.21 Leveraging the power of stories and the personal relevance of peer communication, interventions can be culturally tailored to vulnerable groups to reduce health disparities.11,15,22 In a prior single-site study, we demonstrated that a hypertension storytelling intervention was superior in improving BP, compared with a nonhypertension attention control.20 In the current paper, we describe a multisite trial of storytelling among African American Veterans. We report intervention effect on 6-month BP outcomes and process measures that may represent pathways through which the intervention may work. Our primary hypothesis was that the storytelling intervention would result in better BP control (lower systolic and diastolic), than the didactic comparison.
We conducted a 2-arm, multisite randomized controlled trial to test the effectiveness of the storytelling intervention on hypertension control. Veterans were randomized within sites to intervention or comparison. The study was reviewed and approved by the Veterans Administration (VA) Central Institutional Review Board (IRB #10-15).
Setting and Sample
The study was conducted in primary care clinics at 3 VA medical centers, selected based on geographical diversity and high proportion of African American Veterans. One VA site (site A) was a smaller Southern US city with a large rural catchment area, and 2 (sites B and C) were major metropolitan centers (one in the Midwest and one mid-Atlantic). The number of primary care patients at each facility varied from 28,612 to 37,944 and across sites 37% of primary care patients were African American. On average for all patients, across these 3 clinics, mean systolic BP (SBP) was 2.75 mm Hg higher for African Americans versus whites, and diastolic BP (DBP) was 4.92 mm Hg higher for African Americans versus whites.
Veterans recruited were African Americans with chart-documented uncontrolled hypertension. Veterans were eligible if they self-identified as African American, had a diagnosis of hypertension (International Classification of Diseases-9-CM diagnosis code: 401.* Essential hypertension), had at least one BP measurement >140/90 (>130/80 for those with diabetes) in the preceding 12 months, and were on at least one medication for BP.
The Storytelling Digital Video Disk Intervention
To enhance personal relevance,19 we used Veteran storytelling, recollections of actual events told by a Veteran who experienced those events. The development of the storytelling intervention digital video disk (DVD) is reported in detail elsewhere.19 Briefly, we videotaped African American Veterans with controlled hypertension telling their stories of success managing their hypertension. We took a 2-step approach to engaging African American Veterans in a narrative intervention development to integrate the patient perspective. We first videotaped African American Veterans telling their stories about hypertension self-management. The process for story elicitation used techniques from narrative theater arts,19 protocols for incorporating narrative into interventions,17,20 and culturally tailored communication research with African American Veterans.23 We used a story facilitation process developed in the theater arts to: (1) identify good storytellers; (2) elicit engaging, real-life stories; and (3) select the best stories to effect behavioral change. Selected stories emphasized behaviors congruent with clinical recommendations for controlling hypertension (eg, adhering to medications, avoiding salt, talking to your doctor, managing stress). Second, we further engaged African American Veterans as part of our study team to identify those stories that would be most influential with other Veterans in changing their hypertension management behaviors. To enhance the authenticity and relatability of the stories, 3 African American Veterans with hypertension were engaged as research partners to review the videotaped footage and helped identify the 10 stories that were most engaging and personally relevant to them for inclusion in the storytelling DVD intervention.
The storytelling DVD began with 5 stories from African American Veterans who successfully controlled their hypertension (Fig. 1). After the stories, the DVD also included a “Learn More” menu where didactic content on how to control your BP was presented as slide shows with a voiceover by an African American Veteran describing positive health behaviors. Segments were synergistic with the content of the Veterans’ stories, addressing talking to your doctor, taking medications, managing stress, diet and exercise, and talking with family and friends. One storytelling DVD was provided at baseline, with a second booster storytelling DVD with an additional 5 new Veteran stories mailed after 3 months. Veterans who did not have a DVD player at home were provided with one to take home along with the DVD.
The Comparison DVD
The comparison didactic-only DVD was designed as an active intervention to provide hypertension education. The comparison DVD included only the “Learn More” didactic content described above, isolating the effect of storytelling in the intervention. Veterans in this arm were also offered a DVD player to take home if needed, and a booster didactic-only DVD with additional new educational content was mailed out after 3 months.
Eligible Veterans were sent a letter inviting participation, with an opt-out card. If no opt-out card was received in a 2-week period, the study team called the Veteran to invite participation and conduct a phone screen to determine further eligibility. We mailed letters to 850 Veterans at site A, 1000 Veterans at site B, and 1500 at site C (number varied based on the number of eligible Veterans).
Randomization was stratified by site. For each site, our statistician created a randomization table with randomization in blocks of 10. DVD cases were numbered and included either the storytelling DVD or didactic comparison. When Veterans came in for their baseline visit, they received their first DVD. Study staff were blinded to randomization and learned with the patient what arm they were randomized to when they opened the DVD case.
There were 3 points of data collection: (1) at baseline before watching the intervention or comparison DVD; (2) at baseline immediately after watching the DVD; and (3) follow-up 6 months after baseline.
The primary outcome of interest, SBP and DBP, was measured at baseline (and repeated 6 mo later). BP was measured 3 times to obtain a baseline average using an Omron HEM907XL automated BP monitor. All research assistants travelled to the coordinating center before the trial to receive standardized training on how to correctly complete BP readings according to protocols approved by the World Health Organization and used by the Coronary Artery Risk Development in young Adults (CARDIA) study.24
We designed a questionnaire to collect data on hypertension management behaviors, smoking, alcohol, exercise, beliefs about medications, self-efficacy for management hypertension,5,23 medication adherence,25 and health literacy.26 We measured engagement in the storytelling intervention by the number of different stories watched.
At baseline, after completing the questionnaire and providing demographic characteristics and baseline BP readings, Veterans were given time to watch as much of the DVD as they desired. A research assistant documented how much of the DVD they watched, including the number of stories watched in the intervention group.
Immediately after watching the DVD, Veterans completed the Transportation Scale developed and validated by Green and Brock11 and adapted for videotaped stories,27 which measures engagement in a story, including intellectual and emotional engagement with the storyteller. Results of these process measures have been published and are summarized in the discussion.28
At 6-month follow-up, Veterans had their BP measured again using the protocol described above, completed the questionnaire again, and self-reported on whether they had viewed each of their 2 DVDs since baseline.
We first compared baseline Veteran characteristics by study group to characterize the Veteran sample and examine adequacy of randomization. To measure engagement (intervention fidelity), we assessed the number of stories watched by the intervention group at baseline.
Our primary hypothesis was that the storytelling DVD intervention would result in better control (lower systolic and diastolic BP), as compared with the didactic-only DVD. For this analysis, we used the baseline and follow-up BPs of all Veterans. For our 2 primary linear regression models, the dependent variables were change in BP from baseline to follow-up (SBP change and DBP change, respectively), and the independent variable was group assignment. The overall model included baseline BP as covariate along with a fixed effect for site. Before modeling, all data were reviewed for completeness; ranges and scatterplots were used to look for outliers (note that 2 Veterans were excluded with SBP readings <85, and pulse pressure <20—Fig. 2). For our primary analysis, we used an intent-to-treat approach in that we analyzed as randomized all those with follow-up data available. We did not use imputation methods to address missing data. To explore the potential bias introduced by attrition, we conducted a secondary sensitivity analysis using BP measures extracted from the electronic health record for the next health care visit after 6 months of follow-up. In this analysis, all those with follow-up clinic visits were included.
As one prespecified goal of the study was to evaluate variation by study site, this was a stratified randomized trial, with each site separately randomized. Thus, we evaluate the primary hypothesis both overall and stratified by site. Next, we conducted stratified analyses based on measured BP control at baseline. Further, as prior research has demonstrated that stories may have a greater effect on Veterans with lower health literacy, we conducted an exploratory secondary analysis where we stratified models by level of health literacy. We also examined medication adherence as a potential pathway through which storytelling might intervene on BP. All analyses were conducted using SAS/STAT software (Version 9.3; SAS Institute, Cary, NC). Supplemental materials to support the analyses are included in the Appendices (Supplemental Digital Content 1, http://links.lww.com/MLR/B415).
Opt-out cards were received from 356 Veterans (10.6% opt-out rate), and of the remaining Veterans, 2558 were contacted by phone, and 789 assessed for eligibility. After screening, 73 were excluded for not meeting inclusion criteria, 5 declined to participate, 91 were excluded for other reasons, and 619 Veterans were successfully recruited (18.5% participation rate). Overall, a total of 619 African American Veterans with hypertension were randomized (101 at site A, 257 at site B, and 260 at site C), with 309 receiving the storytelling intervention and 309 the hypertension didactic-only comparison DVD (Fig. 2).
Randomization resulted in balance in measured Veteran characteristics, as there were no significant differences between the intervention and comparison group at baseline (Table 1). Participants were 92% male, 39% over 65, and most had a high-school education. Over 50% of both the intervention and comparison group reported a household income of <$20,000, over 40% reported worrying about their housing in the past 2 months. A large proportion of Veterans had less than adequate health literacy (41% of intervention, 38% of comparison), indicating a sample with low socioeconomic status.
Main Outcome (SBP and DBP) at 6-Month Follow-up
Our primary outcome analysis included 527 Veterans with BP measurements at both baseline and follow-up (85% follow-up) (Table 2). Follow-up mean SBP was lower for the storytelling intervention (mean=137.9 mm Hg, SD=18.3) versus the comparison group (mean=141.0 mm Hg, SD=18.1). Overall, BP did not decline with the storytelling intervention as baseline SBP was 137.8 and follow-up SBP was 137.9. In the comparison group, BP increased by 1.9 mm Hg, and comparing the intervention and comparison, change in SBP from baseline to follow-up was not significantly different (P=0.3). Further, DBP change was not different among the 2 groups (P=0.4). Our linear regression model using change in BP as the dependent variable, and adjusting for baseline BP and a fixed effect for site, the storytelling DVD intervention group favored the intervention group (β=−2.66, SE=1.44, P=0.066) as compared with the education-only comparison group although the effect of the intervention did reach the significance level of <0.05. DBP was not significantly different in adjusted or unadjusted analyses.
To analyze for potential bias due to attrition, we conducted a secondary analysis using BP data from the electronic health record for follow-up of those that did not have follow-up BP available. This analysis, including 596 Veterans, found a similar pattern with a 2.9 mm Hg difference at follow-up favoring the intervention over comparison [mean intervention=138.4 (SD=18) vs. 141.3 mm Hg (SD 18)] but again was not significantly different.
Storytelling DVD Intervention Viewing at Baseline and Follow-up (Intervention Fidelity)
Of the 309 intervention participants, the mean number of stories watched at baseline was 2.85 (SD=1.5), of total of 5 stories available. Further, 28.6% watched at least part of the interactive educational content. We noted a site variation in the level of engagement, with mean number of stories watched for Veterans at site A (mean=2.08, SD=0.77), lower than for Site B (mean=3.54, SD=1.52), and site C (mean=2.45, SD=1.33), t test P=0.03 comparing site A with sites B/C combined. At 6 months’ follow-up, the majority (97%) of intervention-group Veterans said they watched DVD sent home with them at least once after they got home, whereas 65.39% said they watched it more than once. By site, the percent that watched it more than once was: site A: 52.4%; site B: 67.8%; site C 68.0%. At follow-up, 85% of intervention-group Veterans said they watched the new stories on the mailed booster DVD at least once and 47% said they watched it more than once. By site, the percent that watched it more than once was: site A: 40.5%; site B: 41.3%; site C: 55.7%. Further, 103 of the 309 intervention-group patients reported that they viewed a storytelling DVD with their friends or family during follow-up.
Prespecified Site-specific Analyses of Follow-up BP
At sites B and C, we found point estimates for difference in SBP similar in direction to the overall effect, favoring the intervention, although not significantly different (Table 2A). However, at site A, follow-up intervention mean SBP was 138.1 mm Hg (SD=19.9) and comparison was 135.1 mm Hg (SD=16.4), with no significant difference.
Exploratory Analysis: Stratified Outcomes by Baseline BP Control
Although patients were selected for recruitment from among those with hypertension on treatment and with chart-documented uncontrolled BP, 50.3% (265/527) of patients had measured baseline BPs in control (<140/90). Thus, those randomized can be characterized as Veterans with persistently uncontrolled BP (uncontrolled in chart and at baseline), and Veterans with prior uncontrolled BP now controlled (at baseline). When stratified by baseline BP (Table 3), we found no difference in SBP and DBP change among those with persistently uncontrolled BP (chart and baseline). Among those with prior uncontrolled BP, but now controlled BP at baseline, both groups had an increase in BP. The increase in BP among the comparison group was near-double that of the storytelling intervention. The control group BP rose by 10.9 mm Hg (SD=14.4), compared with an intervention increase of 6.3 mm Hg (SD=16.9) (P=0.02). Similarly, DBP rose by 6.2 mm Hg (SD=16.9) in the control compared with 3.2 (SD=9.2) in the stories intervention (P=0.01). After adjustment for site and baseline BP, the increase in BP among those with controlled BP at baseline was again significant (SBP β=−4.42, SE=1.8, P=0.016 and DBP β=−2.8, SE=1.16, P=0.017).
Exploratory Analysis: Stratified Outcomes by Health Literacy
When stratified by health literacy, among those with adequate health literacy, we found a similar 3.3 mm Hg difference in follow-up BP [intervention=138.4 mm Hg (SD=18.3), comparison=140.7 mm Hg (SD=18.5), P=0.1]. Among those with inadequate health literacy, the difference was greater [5.5 mm Hg difference; intervention=137.4 mm Hg (SD 18.4), comparison=142.9 mm Hg (SD 19), P=0.1], although these subset analyses were not significantly different.
Although not statistically significantly different (P=0.2), it is notable that the percent of Veterans with who reported high medication adherence at follow-up was somewhat greater for the intervention group (37%) when compared with the comparison group (32%), with a change from baseline of 10% for intervention and 2% for comparison group.
In unadjusted analyses, we observed a small effect of a storytelling intervention on SBP in a cohort of African American Veterans with hypertension; less than that seen with our prior study.20 However, the effect was not statistically significant in univariate analysis or after adjustment for baseline SBP and a fixed effect for site, and there was no effect on DBP. In this multisite trial, we stratified randomization by site and planned a secondary analysis to test for site-level variation in the effect of storytelling on engagement in the intervention and outcomes. We found a strong site effect. At one site, the intervention group improved while the controls deteriorated, resulting in 6.3 and 3.9 mm Hg more improvement for the intervention group in SBP and DBP (P=0.06 and 0.04), respectively; at the other 2 sites, there were positive and negative changes, all small, in the 2 measures, with minimal differences—one site favored the controls and the other, the intervention (these comparisons did not approach statistical significance; all P>0.20).
The reasons for the difference by site are not entirely clear. Lack of success at site A may have been moderated by differing intervention engagement. At each site, we did not mandate viewing of DVD’s, but allowed Veterans to choose which and how many stories to view. Veterans at site A watched fewer stories at baseline and follow-up. Site A included many rural, Southern Veterans who may have felt less relatedness to the storytellers (homophily).11,15 Further, of the 10 stories presented on the 2 DVDs, only 1 story was from a site A Veteran. Thus, the DVD may have felt less relevant to the local cultural experience of site A Veterans. However, this site also had turnover in the project leadership and staff level, which may have contributed to these observations. The observed site variation has important implications for dissemination of storytelling interventions. If homophily15,27 is maximized by drawing from local environment (Veterans similar sociocultural experience), stories specific to site may be more effective, but are more time-intensive to create.
Conceptually, stories are thought to operate by emotionally engaging Veterans in the content, thus reducing counter-arguing, enhancing cognitive processing, and leading to health-promoting processes.15 We explored several possible processes through which the stories intervention might lead to improved BP. First, we measured emotional and intellectual engagement. Consistent with prior work in other diseases,11,15 we found stories influenced emotional engagement, but there was no difference in intellectual engagement comparing storytelling intervention and the didactic-only DVD. As we report in detail elsewhere,28 the impact of this storytelling DVD intervention was significantly different than the comparison DVD on engagement with the DVD material and on Veteran intentions to change behavior. The video transportation scale subitem “the DVD affected me emotionally” was rated higher by the intervention group than the comparison (P=0.001).
Past these proximal perceptions, we were not able to identify strong differences during follow-up in important self-management behaviors. As previously published,28 intervention-group Veterans reported being significantly more likely to report planning to work on remembering to take their BP medications (P=0.04), However, as reported here, the impact on self-reported adherence did not reach statistical significance.
In our prior single-site storytelling trial,20 which enrolled anyone with high BP, our storytelling intervention was only successful for those who were uncontrolled at baseline (we found among those with uncontrolled BP at baseline), the intervention group had a greater reduction in BP during the intervention period (11.2 mm Hg greater change, compared with attention-only control group). For the current study, we required at least 1 uncontrolled BP reading in the previous 12 months to be uncontrolled. Despite this, about half (265/527) of study subjects had chart-documented uncontrolled BP but controlled BP readings at baseline. Thus, we decided to conduct stratified analyses by baseline control status. Surprisingly, the intervention appeared to help in the baseline-controlled subgroup (P=0.02 and 0.01 for change in SBP and DBP, respectively), but had essentially no effect in the group with persistently uncontrolled BP (both P>0.70). As an unplanned analysis, these nominal P-values should be interpreted cautiously. As we did not have multiple measures of control in our prior study, this persistently uncontrolled group is unique. Our study would suggest that the storytelling intervention was ineffective among the group with more resistant (persistently uncontrolled) hypertension and more intensive strategies may be needed for these patients.
Likely, there may be several additional reasons for the differences between our current trial and the previous trial.20 Most importantly, our current trial used a stronger, active, interactive hypertension education DVD as the comparison whereas the prior study used an attention control with no active component about hypertension. Further, the population was more heterogenous both geographically and socioeconomically. As stories are theorized to act through the viewer relating to the storyteller (homophily), having storytellers drawn from a small geographic area with cultural and economic similarities may be important to the effect of storytelling. The prior study had 77% women,20 but the majority of our Veterans are male. Perhaps stories are less salient for male patients. Also, the Southern, rural Veterans from site A may not have related as easily to the Veterans in the storytelling DVD.
Our multisite trial was limited by challenges in recruitment (specifically site A) that resulted in overall recruitment lower than planned for that site. Further, we did have some loss to follow-up (15%). Conducting our trial in the VA was a strength in that we able to use national infrastructure to target Veterans with uncontrolled BP before enrollment. However, most participants had fairly good BP at enrollment, leaving little room for improvement. This was especially true at site A, which had the lowest mean baseline BP. Finally, the Veteran population probably does not reflect the overall population of African Americans with hypertension in the United States, thus limiting the generalizability of our study.
In conclusion, considerable morbidity and mortality is attributable to chronic diseases, illnesses that are highly prevalent in our society and require management by health care providers, self-management by patients, and effective bidirectional communication.29,30 Our current and prior work has explored the potential of storytelling to influence self-management.10,15–20,28,31 Human beings often respond to stories that are told by members of their community, however their effectiveness at changing behavior may be limited by how they are disseminated. Future work on stories for behavior change should continue to explore mechanism of action, and test strategies for dissemination, balancing the need for scalability and local targeting. Note that a high percentage of the Veterans reported watching the follow-up DVD, suggesting an interest in further engagement with the storytellers. As we have demonstrated that stories enhance emotional engagement, future research is needed to explore ways to sustain the experience over time. Combining an initial video storytelling intervention with longitudinal components (such as brief text messages written by the storytellers or using content from the stories) to continue the conversation may result in a more sustained effect. As we learn through stories, and use stories to make sense of our lives, storytelling should continue to be tested in self-management support interventions.
The authors would like to acknowledge Dr Arlene S. Ash and the University of Massachusetts Statistical Methods Core for consulting on the statistical analyses of this paper.
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