Green Michael J, Jesus Sol De, George Daniel R, Hopkins Margaret, Lehman Erik, Scoy Lauren Van, Snyder Bethany, Myers Kimberly R
Department of Humanities, Penn State College of Medicine , Hershey, PA, USA.
Department of Medicine, Penn State College of Medicine , Hershey, PA, USA.
Perm J. 2024 Dec 16;28(4):65-76. doi: 10.7812/TPP/23.184. Epub 2024 Sep 6.
Understanding the lived experience of illness is important for empowering patients and informing health care practitioners. This study investigated the impact of a book-length comic memoir, , by Peter Dunlap-Shohl, on patients' mental health, knowledge, and attitudes about living with Parkinson's disease (PD). The authors further explored which patients found the book to be beneficial and why.
In this convergent mixed methods study, patients with PD were recruited from a multidisciplinary movement disorders clinic in 2019-2020 and were eligible if cognitively intact; English-speaking; had stage I, II, or III PD; and < 12 months had elapsed since diagnosis. Participants received to read at home, measures were obtained pre- and postintervention, and participants were interviewed within approximately 1 month.
Thirty participants completed the study (13 males and 17 female; mean age = 59 years). Four qualitative themes emerged: Reading 1) validated the experience of living with PD, 2) reinforced practical behaviors that support well-being, 3) provided insight about the illness experience, and 4) was emotionally and physically taxing. There were no statistically significant pre-/postintervention changes in knowledge, self-efficacy, hope, or emotional distress. Book "endorsers" appreciated Dunlap-Shohl's dark humor and resonated with his experience; "detractors" found the book to be blunt and sometimes frightening.
DISCUSSION/CONCLUSION: Participants who liked the book-the "endorsers"-revealed that it deeply resonated with them and helped them realize they were not alone with the disease. Many commented that Dunlap-Shohl's story was in some ways their story-and that this was both practically and emotionally reassuring. has the potential to benefit patients who appreciate comics, enjoy dark humor, and are not overly pessimistic.
了解疾病的实际体验对于增强患者权能和为医护人员提供信息至关重要。本研究调查了彼得·邓拉普 - 肖尔所著的一本长篇漫画回忆录对帕金森病（PD）患者心理健康、知识以及对与帕金森病共存的态度的影响。作者进一步探讨了哪些患者认为这本书有益以及原因。
在这项聚合性混合方法研究中，2019 - 2020年从一个多学科运动障碍诊所招募了帕金森病患者，入选条件为认知功能完好、会说英语、患有I、II或III期帕金森病且自诊断以来已过去不到12个月。参与者在家中阅读该书，在干预前后进行测量，并在大约1个月内对参与者进行访谈。
30名参与者完成了研究（13名男性和17名女性；平均年龄 = 59岁）。出现了四个定性主题：阅读该书1）验证了与帕金森病共存的体验，2）强化了支持幸福感的实际行为，3）提供了对疾病体验的见解，4）在情感和身体上都让人感到吃力。在知识、自我效能感、希望或情绪困扰方面，干预前后没有统计学上的显著变化。书籍“支持者”欣赏邓拉普 - 肖尔的黑色幽默并与他的经历产生共鸣；“ detractors”（原文有误，推测为“反对者”）认为这本书直言不讳，有时令人恐惧。
讨论/结论：喜欢这本书的参与者——“支持者”——表示它与他们产生了深刻共鸣，并帮助他们意识到自己在疾病中并不孤单。许多人评论说，邓拉普 - 肖尔的故事在某些方面就是他们的故事——这在实际和情感上都让人安心。这本书有可能使欣赏漫画、喜欢黑色幽默且不过度悲观的患者受益。
