Presenting scientifically-derived illness experiences online - Evaluation of the use of the DIPEx Germany website.

OBJECTIVE: To evaluate the real-time usage of krankheitserfahrungen.de, a website providing scientifically collected and analyzed experiences of persons with various chronic illnesses. METHODS: Web analytics of website use of www.krankheitserfahrungen.de in 2016. Qualitative content analysis of the 150 most and least opened video/audio clip titles in 2018-19. RESULTS: In 2016, krankheitserfahrungen.de had 19,703 unique visits, of which 3925 were returning visits. Between new and returning visits, the latter were characterized by more actions and more time spent on the website. Thematic pages were clicked more often during new visits and person pages were more frequented during returning visits. In 2018-19, video/audio clip titles related to topics around uncertainties and/or decision making were most often clicked, whereas the least clicked clips dealt with topics like illness management, problem-solving, giving advice to others and emotionally difficult topics such as suffering, death and burden for the family. CONCLUSION: A website with balanced, scientifically collected and analyzed patient experiences attracts a sufficient number of users and is used for further explorations. PRACTICE IMPLICATIONS: Using multiple formats, broad topics and diverse personal experiences being accessible through themes or persons is necessary when a scientifically based website on patients' experiences is designed.

Learning-by-doing: the importance of experiential knowledge sharing for meeting the information needs of people with colorectal cancer in Germany-a qualitative study.

OBJECTIVE: The aim of this article is to understand how, when and why the topics of information and information needs arise when people diagnosed with colorectal cancer (CRC) narrate their illness experiences. METHODS: Guided by principles of grounded theory, a qualitative interview study was conducted that collected a wide variety of illness experiences with CRC in Germany using maximum variation sampling. Sampling criteria included place of residence, age at interview, age at diagnosis, treatment, disease course and sociodemographic factors such as varying family backgrounds and professions. SETTING AND PARTICIPANTS: Men and women diagnosed with CRC in different parts of Germany were sought via physicians, social workers and psychologists in hospital settings, organisations offering psychosocial support for patients with cancer, self-help groups, rehabilitation centres, newspapers and personal contacts. The interviewees in the final sample (n=41) had been diagnosed with CRC between 4 weeks and 36 years prior to the interview. RESULTS: Three inter-related categories of information needs emerged from the analysis: the need for non-medical information for daily life; the challenge of integrating the bodily changes that accompany CRC in everyday life; and sources of non-medical information concerning handling daily life. Learning to live with the bodily changes of CRC in everyday life was described as a long process of learning-by-doing. While sources for medical information were clear, finding practical information was often a challenge. The best source of such information was often seen to be other people living with the disease, who shared their experiential knowledge, as well as stoma and nutritional therapists. CONCLUSION: Information needs are part of the process and struggle to normalise everyday life after a disruptive diagnosis and treatment. Providing access to practical knowledge and information from others with CRC experience may be an important resource for patient support.

Understanding the role of health information in patients' experiences: secondary analysis of qualitative narrative interviews with people diagnosed with cancer in Germany.

OBJECTIVE: To analyse the role and meaning of health information in individuals' experiences with either breast, colorectal or prostate cancer in order to better understand unmet information needs of people with a cancer diagnosis. DESIGN: This is a secondary analysis of data from a qualitative interview study including narrative interviews and maximum variation sampling. A thematic analysis was conducted, followed by an in-depth analysis based on the principles of grounded theory. SETTING: Interviewees were sought across Germany through self-help organisations, primary care clinics, rehabilitation facilities, physicians and other healthcare professionals to develop cancer modules for the website krankheitserfahrungen.de (illness experiences.de). PARTICIPANTS: Women with a diagnosis of breast cancer, individuals with a diagnosis of colorectal cancer and men with a diagnosis of prostate cancer. RESULTS: The meaning and role of information in the illness experiences were clearly associated with gaining control in a seemingly uncontrollable situation in which others -people, the disease- take over. Four categories characterise the ways in which information helped interviewees to regain a sense of control following a diagnosis of cancer: 'becoming confident in one's treatment decision', 'taking responsibility for one's situation', 'understanding the consequences of the disease and treatment for one's life', and 'dealing with fear'. There was, however, always a fine line between information seeking and becoming overwhelmed by information. CONCLUSIONS: Information needs to be understood as a management tool for handling the disease and its (potential) consequences. Patients' unmet needs for information might not be easily solved by a simple increase in the amount of information because emotional support and respect for patient autonomy might also play a role. The evaluation of one's own information behaviour and the information received is closely linked to how the illness unfolds. This makes it challenging to document unmet information needs and satisfaction with information independent of an individual's illness trajectory over time.