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Patient Educ Couns. 2020 Jan;103(1):199-207. doi: 10.1016/j.pec.2019.08.014. Epub 2019 Aug 12.

Connecting one's own illness story to the illness experiences of others on a website-An evaluation study using the think aloud method.

Author information

1
Department of Rehabilitation Psychology and Psychotherapy, Institute of Psychology, University of Freiburg, Engelbergerstraße 41, 79106 Freiburg, Germany. Electronic address: martina.breuning@psychologie.uni-freiburg.de.
2
Department of Rehabilitation Psychology and Psychotherapy, Institute of Psychology, University of Freiburg, Engelbergerstraße 41, 79106 Freiburg, Germany. Electronic address: lisa.schaefer@psychologie.uni-freiburg.de.
3
Department of Rehabilitation Psychology and Psychotherapy, Institute of Psychology, University of Freiburg, Engelbergerstraße 41, 79106 Freiburg, Germany. Electronic address: gabriele.lucius@psychologie.uni-freiburg.de.
4
Institute of Social Medicine and Epidemiology, Brandenburg Medical School Theodor Fontane, Hochstrasse 15, 14770 Brandenburg an der Havel, Germany. Electronic address: christine.holmberg@mhb-fontane.de.

Abstract

OBJECTIVE:

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).

METHODS:

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.

RESULTS:

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.

CONCLUSION:

Reception of a variety of illness experiences presented online led patients to consider their own challenges in coping with their illness.

PRACTICE IMPLICATIONS:

Providing other patients' experiences in information and education materials helps patients to deal with their own illness.

KEYWORDS:

Coping; Online; Patient experiences; Qualitative research; Think aloud

PMID:
31466883
DOI:
10.1016/j.pec.2019.08.014

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