Objective: To explore the impact of reading a graphic memoir on patients’ knowledge, mental health, and attitudes about living with Parkinson Disease (PD).

Background: In recent years, the medium of comics has been used to give voice to patients’ experience of illness via graphic memoirs.¹ Previously, we explored the utility of reading the graphic memoir, My Degeneration, for clinicians who treat patients with PD. We found that it helped clinicians better understand patients’ experience and it was suggested as a potential resource for PD patients.² In follow up, we studied whether reading My Degeneration would: 1) increase patients’ knowledge about PD; 2) improve self-efficacy; and 3) decrease emotional distress about the impact of PD.

Method: Prospective convergent mixed methods design was utilized.³ Data were analyzed separately, then merged to compare and contrast conclusions from each data set. In addition, we explored qualitative themes to explain differences in quantitative findings and to identify characteristics of patients who found the book beneficial.

Results: 30 PD patients participated (16 males), mean age of 59 years and mean length of time since diagnosis of 10 years.  97% were white and 90% had some college education. Baseline knowledge about PD was high (mean score = 89.4 on 0-100 scale) and was unchanged after reading the book. Self-efficacy rose slightly, but not significantly (p=0.28). Emotional distress was unaffected. Qualitative analysis revealed 4 themes: a) the book validated patients experience living with PD; b) the book reinforced practical behaviors to support wellbeing; c) individuals saw value in sharing the book to provide insight into PD; and d) the reading experience was taxing. Positive perceptions were related to gender (90% of males vs. 56% of females found the book validating) and readers’ appreciation of the authors use of dark humor.

Conclusion: Reading My Degeneration was most validating for males who shared the author’s dark humor, but did not impact knowledge or mental health. The book was seen as a useful resource for understanding the experience of illness, and highlighted the value of tailoring educational resources for PD patients, including the use of graphic memoirs to complement traditional care.

References: 1. Green MJ, Myers KR. Graphic medicine: use of comics in medical education and patient care. BMJ. 2010 Mar 3;340:c863. doi: 10.1136/bmj.c863. PMID: 20200064.
2. Myers KR, George DR, Huang X, Goldenberg MDF, Van Scoy LJ, Lehman E, Green MJ. Use of a Graphic Memoir to Enhance Clinicians’ Understanding of and Empathy for Patients with Parkinson Disease. Perm J. 2019;24:19.060. doi: 10.7812/TPP/19.060. Epub 2019 Oct 23. PMID: 31710837; PMCID: PMC6844551.
3. Creswell, J. W., & Creswell, J. D. (2017). Research design: Qualitative, quantitative, and mixed methods approaches: Sage publications

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MDS Abstracts - https://www.mdsabstracts.org/abstract/a-mixed-methods-study-on-the-impact-of-reading-the-graphic-memoir-my-degeneration-a-journey-through-parkinsons-on-patients-with-parkinsons-disease/