Department of Rehabilitation Psychology and Psychotherapy, Institute of Psychology, University of Freiburg, Engelbergerstraße 41, 79106 Freiburg, Germany.
Institute of Social Medicine and Epidemiology, Brandenburg Medical School Theodor Fontane, Hochstrasse 15, 14770 Brandenburg an der Havel, Germany.
Patient Educ Couns. 2020 Jan;103(1):199-207. doi: 10.1016/j.pec.2019.08.014. Epub 2019 Aug 12.
It is well described how telling one's illness story can help to cope with illness, but little is known about the processes of reception of other people's stories. This study aimed to analyse patients' reception processes of other patients' experiences while using a website (www.krankheitserfahrungen.de - DIPEx Germany).
A text analysis of think aloud transcripts was conducted, using data from a usability study of the website krankheitserfahrungen.de. Twenty patients with the same conditions as presented on the website (chronic pain, diabetes type 2, inflammatory bowel disease, epilepsy) were assigned to the study, asked to use the website and concurrently to think aloud. The sessions were audio recorded, transcribed and analysed using grounded theory methodology.
Study participants started to talk about their own illness experiences while using the website. They constantly compared their experiences with those they read about. Participants' verbalised experiences were categorised according to three underlying themes: significant emotions, unresolved problems, and inevitability and acceptance.
Reception of a variety of illness experiences presented online led patients to consider their own challenges in coping with their illness.
Providing other patients' experiences in information and education materials helps patients to deal with their own illness.
人们已经充分了解到讲述自己的疾病故事有助于应对疾病，但对于接受他人故事的过程却知之甚少。本研究旨在分析患者在使用网站（www.krankheitserfahrungen.de - DIPEx 德国）时对其他患者经历的接受过程。
对大声思维转录本进行了文本分析，所使用的数据来自网站 krankheitserfahrungen.de 的可用性研究。将 20 名患有与网站上相同疾病的患者（慢性疼痛、2 型糖尿病、炎症性肠病、癫痫）分配到研究中，要求他们使用该网站并同时大声思考。会话被录音、转录并使用扎根理论方法进行分析。
研究参与者在使用该网站时开始谈论自己的疾病经历。他们不断将自己的经历与他们读到的内容进行比较。参与者的口头表达经验根据三个主题进行了分类：重要的情绪、未解决的问题以及必然性和接受。
在线提供各种疾病经历使患者开始考虑自己在应对疾病方面的挑战。
在信息和教育材料中提供其他患者的经验有助于患者应对自己的疾病。
