In Their Own Words: Creating Connections Through Narrative Medicine

Abstract

People with Parkinson's disease (PwP) often report feeling unheard or hurried through clinical visits, without the opportunity to share their unique illness story. Simultaneously, clinicians report increasing dissatisfaction with efficiency pressures that disincentivize active listening and patient-centered communication. This research brief outlines a guided short-form journaling activity, the 55-word story, for PwP to share their stories in a format that can be received by busy clinicians. Three cohorts of 10 to 13 PwP completed the program, with virtual meetings over four consecutive weeks, led by a facilitator trained in both narrative medicine and movement disorders. By the end of each cohort, nearly all (31/35 participants, 88.6%) reported an improved relationship with their neurologist, communication skills, clarity about goals and values, and/or increased community with other PwP. Further, 32/35 (91.4%) reported an intention to share their 55-word story with health providers, friends, or family. An online guided journaling activity was feasible, enjoyable, and successful at improving the well-being of PwP. This model can be used at other institutions or with other chronic illnesses.

Introduction

Although patient-centered communication is a core feature of high-quality neurological care, ¹ actual communication between clinicians and people with Parkinson's disease (PwP) can be hindered by a lack of time, a lack of clarity, and a lack of shared purpose. ² As a result, PwP often report feeling unheard, ³ while clinicians report frustration and misunderstandings as PwP try and try again to describe complex symptoms. ⁴ A narrative medicine approach,^5–7 centering the individual illness story, has been proposed as a way to overcome these challenges, but busy clinicians may believe they lack the time or the emotional bandwidth to read and digest a complex, multipage illness narrative.

This research brief outlines the use of a short-form journaling technique, the 55-word story, ⁸ to overcome these barriers for both teller and receiver. Drawn from the world of medical education and reflective practice, ⁹ the 55-word story is a tightly constructed, brief window into a particular experience which is illustrative of larger patient needs. Designed to fit on an index card, it is designed to be shared during a busy clinical encounter and has been shown to expand understanding of patient priorities. ¹⁰

The primary aim of this program was to increase the sense of community among PwP. Secondary aims included increased confidence and clarity around communication of priorities, goals, and values, as well as assessing the number of participants who intended to, and who actually did, share their story with others.

Methods

Participants were recruited via an email list maintained by a Parkinson's Foundation Center of Excellence. The email outlined the goals of the program and invited those interested to respond directly to program organizers LK and JG. Three cohorts of up to 12 participants each were filled on a first-come-first-served basis. Participants completed a precohort survey asking about communication with their neurologist and clarity about their personal goals and values as related to their neurological care. These responses were collected using a 5-point Likert scale (1 = strongly disagree; 5 = strongly agree).

Each cohort consisted of 4 consecutive weekly video sessions of ∼1 h each. Sessions were designed and facilitated by SM, a fellowship-trained movement disorders neurologist with masters’ level training in narrative medicine and creative writing. The 4 session arc consisted of (1) introduction to narrative medicine through the lens of Parkinson's disease^11,12; (2) story circles ¹³ to begin to identify and define key moments for the story; (3) discussion of sample narratives drawn from an online database ¹⁴ ; (4) sharing each PwP's individual 55-word story within the group. In between sessions, SM remained available to participants who wished to discuss nuances of storytelling techniques and get feedback on their stories. Following each cohort, participants completed a postcohort survey about their experiences in the program and intention to share (or not) their story with others, again collected using a 5-point Likert scale (1 = strongly disagree; 5 = strongly agree). Participants were also given the opportunity to videotape their story for their personal use.

Survey data was analyzed using Stata14 using a paired t-test to compare pre and post data. A responder rate was calculated by comparing individual responses on the pre and post survey. Qualitative data was reviewed by SM and LK for thematic analysis.

Results

Thirty-five PwP (60% female) completed the program (12 fall, 10 winter, and 13 spring). All reported postsecondary education, and the majority were non-Hispanic white. Responses to the pre and post survey can be found in Table 1 and Figure 1. There were no differences in mean responses by cohort.

Figure 1.

Change in Self-Rated Confidence for (A) My Neurologist Knows Me; (B) I Know How to Communicate With My Neurologist; (C) I Know What's Important to Me; and (D) I Have a Sense of Community.

Table 1.

Responses to Pre and Postintervention Survey on Communication and What Matters Most.

	I feel like my neurologist knows who I am as a person, beyond being a patient with Parkinson's	I have the skills to communicate effectively with my neurologist about what matters to me most in my PD care	I have clear ideas about what is important to me in my PD care	I have had opportunities to talk to others with PD about how they communicate with their neurologist
Preprogram (mean, SD)	3.6 (1.1)	3.6 (0.9)	3.8 (0.8)	3.5 (1.1)
Postprogram (mean, SD)	4.2 (0.7)	4.1 (0.7)	3.8 (0.9)	4.4 (0.8)
Change (mean, SD)	0.6 (1.0)	0.6 (1.3)	−0.1 (1.1)	0.9 (1.3)
P	.0009	.029	.76	0.0002
Improved (n, %)	14 (41.2%)	14 (41.2%)	10 (29.4%)	22 (64.7%)
Same (n, %)	19 (55.9%)	15 (44.1%)	12 (35.3%)	10 (29.4%)
Worsened (n, %)	1 (2.9%)	5 (14.7%)	12 (35.3%)	2 (6.9%)

1 = strongly disagree; 3 = neutral; 5 = strongly agree.

Following the sessions, there was improvement in participants’ sense that their neurologist knew who they were as a person (pre: 3.6 [SD 1.1], post: 4.2 [SD 0.7]; Δ: 0.6 [SD 1.0]; P < .001), improvement in participants’ confidence communicating with their neurologist (pre: 3.6 [SD 0.9], post: 4.1 [SD 0.7]; Δ: 0.6 [SD 1.3]; P = .029), and improvement in participants’ sense of community with others (pre: 3.5 [SD 1.1], post: 4.4 [SD 0.8]; Δ: 0.9 [SD 1.3]; P < .001). There was no change in participants’ ideas about what was important to them in their clinical care.

Of the 35 participants, 31 (88.6%) reported improvement in one or more areas on their postprogram survey compared to their preprogram survey. Detailed responder rates for each question are shown in Table 1. The majority of the participants (n = 30, 85.7%) reported that they would recommend the workshop to others, and nearly all (n = 32, 91.4%) felt a sense of community had developed among the participants. When asked about sharing their stories outside the group, the majority (n = 29, 85.3%) reported they intended to share their stories with their healthcare team, their families, and/or their friends.

In qualitative feedback, participants wrote that sharing their stories in the group or with personal connections improved their sense of well-being. One participant wrote, “I am wearing a big smile … I am totally honored that my 55-word description of [redacted for privacy] caught your spirit.” Another wrote of her gratitude for having participated and for “paving the way for better communication between doctor and patient.” Several indicated their intention to continue writing, including one with the new idea “to write a memoir where each chapter was 55 words.” In fact, several participants “got the bug” and shared multiple 55-word stories, each illuminating a different facet of themselves.

Discussion

This online guided journaling program was highly effective at meeting its primary and secondary aims. Nearly all participants experienced a stronger sense of fellowship with other PwP following the program, and most felt greater confidence in communication with the healthcare team around priorities, goals, and values in PD care. Additionally, the number who reported clarity about their own goals and values increased, though this did not meet statistical significance.

These findings are similar to other narrative medicine programs with patients, which typically find a strong improvement in well-being and communication in the days and weeks following the program. ¹⁵ One study of narrative medicine for advance care planning for PwP ¹⁶ found that a brief (two-session) narrative medicine series increased readiness to engage in advance care planning. However, that study was much smaller (12 participants vs 35 in the present report) and sessions were conducted individually rather than as a group. Another study of a “creative playground” ¹⁷ adopted a mixed-media and visually driven form of narrative, encouraging participants to autonomously create their narrative with the assistance of dedicated arts therapists.

As a concise, adapted implementation of narrative medicine, our program adds to this knowledge by emphasizing community formation, while acknowledging the very real barriers of time, language, and technology. Additionally, our program used an innovative approach to storytelling, the 55-word story. Originally intended as a brief self-reflection for medical students, ¹⁸ the 55-word story can also be used in clinical practice.^10,19 By limiting the text to just a few sentences, the 55-word story forces writers (patients) to focus on 1 or 2 key issues, while still allowing the expressive freedom missing from most checklists or most patient-reported questionnaires. Similarly, the short format is easily integrated into a busy clinical environment, unlike the longer and more detailed patient narratives used in most narrative medicine workshops that may run an hour or more. Because of this, it could be scalable to other clinics or illness states, perhaps by using the electronic patient portal to allow patients to write their own “About Me” section that can be pulled forward into clinical notes.

Limitations

Some important limitations should be noted. This program was conducted at a single academic medical center with a strong tradition of educational, support, and exercise programs for PwP. The majority of PwP seen at this center, like many other Centers of Excellence, largely identify as non-Hispanic White; results may not be generalizable to all PwP, including those who receive care outside the boundaries of academia. In particular, all the participants in this program had postsecondary education, and most had completed graduate or professional school. This implies a level of fluency and articulation that may be more challenging for PwP with less education or those with cognitive impairment. Sessions were held during the daytime, which may have limited the ability of working PwP to participate. Additionally, the videoconferencing technology proved difficult for some, particularly if care partners were not present to assist with real-time troubleshooting. Participants were surveyed immediately at the end of the program, and a long-term follow-up, currently in progress, will be helpful to determine whether the program had a lasting impact on confidence in communication skills or community formation. In particular, we wish to know how many of the 29 participants who expressed intent to share their stories with others actually did so, and what the postintervention clinical encounter was like for both patient and clinician. Finally, the program facilitator, SM, is dual-trained in movement disorders and narrative medicine, a unique combination that likely contributed to programmatic success. Nevertheless, with the development over the last quarter-century of train-the-trainer programs in narrative medicine (both formal degrees/certificates and weekend workshops), the fundamentals of this program could be replicable in other clinics or illness states. Electronic patient portals may also be a space for patients to enter and share a brief “About Me,” which clinicians can review and potentially pull forward into clinical notes.

Conclusions

PwP are hungry for new modes of connection with each other and with their care team. This online, synchronous, guided journaling activity was rapidly subscribed to, feasible, and effective at increasing both confidence and clarity around communication for three cohorts of PwP. This model is relatively inexpensive and easily scalable across institutions, illness types, and even languages. Further research is investigating whether asynchronous, solo journaling can achieve similar effects and the impact of sharing the story on not only the teller (the PwP) but the receiver (family, friends, and healthcare team).