[Patient experiences and patient centeredness : The website project DIPEx Germany]. / Subjektive Krankheitserfahrungen und Patientenorientierung : Das Website-Projekt DIPEx Germany.

Patient centeredness is a central concept in the treatment and rehabilitation of persons with chronic illness in Germany. There are various concepts of and approaches to patient centeredness, most of them developed from the perspective of health care research and the institutions. In terms of participation requirements, there has been a lack of understanding of the patient's perspective and experiences so far. In this article, the authors assume that the collection and analysis of patient experiences can improve patient participation and provide access to the experience of living and coping with an illness, including the patient's interactions with the health care system, their participation, and their preferences for participation. Potential uses for and the limits and risks of utilizing patient experiences are discussed, using the example of the website project Krankheitserfahrungen.de (DIPEx Germany). The project collects patient experiences in the form of narrative interviews. In the course of sharing their stories, the speakers become experts on their own lives and describe where and how they feel engaged in their health care and how they wish to become further engaged, thereby experiencing participation in terms of the International Classification of Functioning. The experience of rehabilitation is viewed in a comprehensive manner for those affected. It is not limited to experiences in specific institutions, but rather, the patient experience includes the context and processes, and describes how patients can find their way back to their lives after the interruption of an illness.

Emotional and physical experiences of people with neovascular age-related macular degeneration during the injection process in Germany: a qualitative study.

OBJECTIVES: In order to better understand the continued barriers to the provision of vascular endothelial inhibitor therapy, this study aims to investigate patients' experiences with neovascular age-related macular degeneration (nvAMD) in Germany during the injection process and how they deal with it. DESIGN AND PARTICIPANTS: This analysis is part of the qualitative arm of a wider mixed-methods study. We recruited participants all over Germany via ophthalmologists, eye clinics, general practitioners, care bases and support groups between June 2018 and December 2020 and selected a subsample of study participants with nvAMD who were either undergoing or had previously undergone vascular endothelial growth factor inhibitor therapy. We conducted narrative, semistructured, face-to-face interviews at the participants' homes, which were audio-recorded. The interviews were thematically analysed. RESULTS: Twenty-two participants were included in this analysis. Experiencing neovascular macular degeneration was dominated by the injection experience. Study participants perceived the treatment with vascular endothelial inhibitor injections as uncomfortable, and they described undergoing varying levels of anxiety during the whole injection process. After some years of receiving multiple injections, the pain and not experiencing any positive effects made participants with significant vision loss want to discontinue therapy. Furthermore, they narrated negative injection experiences in association with their interactions with medical staff and doctors. CONCLUSION: Although time in the medical setting is limited, efficient and good doctor-patient relationships seem crucial for satisfying care experiences. A respectful and humane relationship may be one key to achieving treatment adherence.

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.

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

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.

Doctors' voices in patients' narratives: coping with emotions in storytelling.

OBJECTIVES: To understand doctors' impacts on the emotional coping of patients, their stories about encounters with doctors are used. These accounts reflect meaning-making processes and biographically contextualized experiences. We investigate how patients characterize their doctors by voicing them in their stories, thus assigning them functions in their coping process. METHODS: 394 narrated scenes with reported speech of doctors were extracted from interviews with 26 patients with type 2 diabetes and 30 with chronic pain. Constructed speech acts were investigated by means of positioning and narrative analysis, and assigned into thematic categories by a bottom-up coding procedure. RESULTS: Patients use narratives as coping strategies when confronted with illness and their encounters with doctors by constructing them in a supportive and face-saving way. In correspondence with the variance of illness conditions, differing moral problems in dealing with doctors arise. Different evaluative stances towards the same events within interviews show that positionings are not fixed, but vary according to contexts and purposes. DISCUSSION: Our narrative approach deepens the standardized and predominantly cognitive statements of questionnaires in research on doctor-patient relations by individualized emotional and biographical aspects of patients' perspective. Doctors should be trained to become aware of their impact in patients' coping processes.