[Patients' Narratives as a Tool to Prepare for Medical Rehabilitation: The Website "Medical Rehabilitation (Medizinische Reha)" at www.krankheitserfahrungen.de]. / Patientennarrative als Instrument zur Vorbereitung auf eine medizinische Rehabilitation: Der Erfahrungsbereich "Medizinische Reha" auf der Website www.krankheitserfahrungen.de.

OBJECTIVE: The website "medical rehabilitation (Medizinische Reha)" at www.krankheitserfahrungen.de presents patients' experiences concerning medical rehabilitation and aims at supporting people in preparation for medical rehabilitation. METHODS: Using purposeful sampling 38 former rehabilitation patients were selected. They took part in a guided narrative interview about their experiences concerning medical rehabilitation. Interview transcripts were coded and systematically aggregated based on Grounded Theory. RESULTS: Under the heading "individuals (Personen)" individual experiences of each patient are portrayed on the website. Analysis revealed 8 categories of specific issues and subtopics. These topics are illustrated by original excerpts of the interviews as video, audio or text on the website. Topics are the way to and daily routine in rehabilitation, therapies and other offers of the clinic, family, profession, profits of the rehabilitation, the time afterwards, messages and recommendations. Patients mentioned obstacles and challenges as well as supporting experiences and advice. CONCLUSION: The website provides free and barrier-free information about medical rehabilitation for prospective patients and professionals, exclusively focusing on patients' perspectives.

Effect of a Website That Presents Patients' Experiences on Self-Efficacy and Patient Competence of Colorectal Cancer Patients: Web-Based Randomized Controlled Trial.

BACKGROUND: Patients often seek other patients' experiences with the disease. The Internet provides a wide range of opportunities to share and learn about other people's health and illness experiences via blogs or patient-initiated online discussion groups. There also exists a range of medical information devices that include experiential patient information. However, there are serious concerns about the use of such experiential information because narratives of others may be powerful and pervasive tools that may hinder informed decision making. The international research network DIPEx (Database of Individual Patients' Experiences) aims to provide scientifically based online information on people's experiences with health and illness to fulfill patients' needs for experiential information, while ensuring that the presented information includes a wide variety of possible experiences. OBJECTIVE: The aim is to evaluate the colorectal cancer module of the German DIPEx website krankheitserfahrungen.de with regard to self-efficacy for coping with cancer and patient competence. METHODS: In 2015, a Web-based randomized controlled trial was conducted using a two-group between-subjects design and repeated measures. The study sample consisted of individuals who had been diagnosed with colorectal cancer within the past 3 years or who had metastasis or recurrent disease. Outcome measures included self-efficacy for coping with cancer and patient competence. Participants were randomly assigned to either an intervention group that had immediate access to the colorectal cancer module for 2 weeks or to a waiting list control group. Outcome criteria were measured at baseline before randomization and at 2 weeks and 6 weeks. RESULTS: The study randomized 212 persons. On average, participants were 54 (SD 11.1) years old, 58.8% (124/211) were female, and 73.6% (156/212) had read or heard stories of other patients online before entering the study, thus excluding any influence of the colorectal cancer module on krankheitserfahrungen.de. No intervention effects were found at 2 and 6 weeks after baseline. CONCLUSIONS: The results of this study do not support the hypothesis that the website studied may increase self-efficacy for coping with cancer or patient competencies such as self-regulation or managing emotional distress. Possible explanations may involve characteristics of the website itself, its use by participants, or methodological reasons. Future studies aimed at evaluating potential effects of websites providing patient experiences on the basis of methodological principles such as those of DIPEx might profit from extending the range of outcome measures, from including additional measures of website usage behavior and users' motivation, and from expanding concepts, such as patient competency to include items that more directly reflect patients' perceived effects of using such a website. TRIAL REGISTRATION: Clinicaltrials.gov NCT02157454; https://clinicaltrials.gov/ct2/show/NCT02157454 (Archived by WebCite at http://www.webcitation.org/6syrvwXxi).

[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.

"And then you start to loose it because you think about Nutella": The significance of food for people with inflammatory bowel disease - a qualitative study.

BACKGROUND: Many patients with inflammatory bowel disease strongly believe that food or certain food products heavily influence the symptoms or even trigger acute flare-ups. Unfortunately, there is no generalizable information for these patients, and therefore no effective diet has been identified to date. METHODS: The narrative interviews we used for this study provide the basis for the German website www.krankheitserfahrungen.de . Maximum-variation sampling was used to include a broad range of experiences and a variety of different factors that might influence people's experiences. The sample included men and women of different age groups and social and ethnic backgrounds from across Germany. The interviews were analyzed using grounded theory. RESULTS: Four interrelated categories emerged: managing uncertainty, eating: between craving and aversion, being different and professional help as a further source of uncertainty. The most important issue for our responders was the handling of uncertainty and to find a way between desire for, and aversion against, eating. Many participants described difficulties during formal social occasions such as weddings, birthdays, or when going out to a restaurant. CONCLUSIONS: Many of the experiences the participants reported in their daily struggle with food and their illness, such as cravings for and abstaining from certain foods, were rather unusual and often stressful. Because they decided not to go out in public any longer, some of the interviewees experienced even more social isolation than they did before. Health professionals need to become more involved and not only advice about food and eating, but also help their patients find strategies for avoiding social isolation.

Type 2 diabetes patients' perspectives on lifestyle counselling and weight management in general practice: a qualitative study.

BACKGROUND: Lifestyle counselling is a pivotal aspect of diabetes care. But general practitioners (GPs) often have problems in finding their role in patients' weight management. The aims of this study were to investigate the experiences of type 2 diabetes patients with lifestyle counselling from their GPs and to explore how patients' preferences regarding counselling are embedded in the context of self-management and wider cultural aspects of nutrition. METHODS: Narrative interviews were conducted with 35 people with type 2 diabetes aged between 35 and 77 years. The interviews were transcribed verbatim and analysed using the thematic framework method. RESULTS: Many patients had a strong feeling of personal responsibility for weight reduction as integral to diabetes self-management but found it difficult to integrate the changes their disease requires into their self-management activities. They attached great importance to their GPs' advice on diet. While some patients appreciated direct communication, others regarded dramatic pictures as either unhelpful or offending. A serious problem was the incompatibility of the dietary recommendations with daily life resulting in a reluctance to adjust the whole diet to the needs of diabetes care. CONCLUSIONS: Ambivalence towards patient self-management and tensions between the necessary changes to patients' lifestyles and their culture, makes the GP's role difficult and full of conflict. Instead of focusing exclusively on the guidelines of diabetes management and provision of information, GPs should explore the patients' capabilities of self-management through open communication and accept their patients' wishes to protect nutrition as part of their culture.

[Helpful factors in day treatment for alcohol dependent patients--a qualitative narrative interview approach]. / Wirkfaktoren einer tagesklinischen Behandlung aus der Sicht alkoholabhängiger Patienten--eine qualitative narrative Interviewstudie.

Day treatment for alcohol dependent patients is still uncommon in Germany. The presented study aims to answer the question how patients experience this kind of treatment and which factors they perceive as important for their treatment success.7 interviews with alcohol-dependent patients were conducted. Data were analysed with qualitative methods and the help of a computer-supported coding system.We found several factors that are relevant for patients, especially important are factors concerning the therapeutical relationship as well as factors that are specific for day treatment.We can conclude that day treatment is seen as helpful to improve dependency symptoms by the patients.

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.

Experiences of food abstinence in patients with type 2 diabetes: a qualitative study.

OBJECTIVE: People with type 2 diabetes often report pressure to abstain from many of life's pleasures. We tried to reconstruct these patients' sense of pressure to better understand how people with diabetes make sense of, and integrate, these feelings into their life. DESIGN, SETTING AND PARTICIPANTS: A secondary analysis of narrative interviews with 14 patients with type 2 diabetes who are part of a website project. MAIN OUTCOME MEASURES: Grounded theory-based analysis of narrative interviews, consisting of open, axial and selective coding. RESULTS: People with type 2 diabetes felt obliged to give up many pleasures and live a life of abstinence. They perceived a pressure to display a modest culinary lifestyle via improved laboratory test results and weight. Their verbal efforts to reassure and distance themselves from excessiveness indicate a high moral pressure. With regard to the question of how to abstain, food and behaviour were classified into healthy and unhealthy. Personal rules sometimes led to surprising experiences of freedom. CONCLUSIONS: People with diabetes have internalised that their behaviour is a barrier to successful treatment. They experience an intensive pressure to show abstinence and feel misjudged when their efforts have no visible effect. Taking into account this moral pressure, and listening to patients' personal efforts and strategies to establish healthy behaviours, might help to build a trusting relationship with healthcare providers.

Using others' experiences. Cancer patients' expectations and navigation of a website providing narratives on prostate, breast and colorectal cancer.

OBJECTIVE: To understand what cancer patients expect and may learn from other patients' experiences, as analyzed and sorted for presentation on a website called krankheitserfahrungen.de (meaning "illness experiences"). METHODS: Mixed methods approach including log file analyses, survey data analyses and thematic analysis of focus group discussions. RESULTS: Users highly valued the wide range of patient experiences presented. The academic leadership of krankheitserfahrungen.de made them trust the information quality. Reading, watching and listening to other cancer patients' experiences gave users a feeling of hope and confidence. Searching for persons with similar experiences was a major way of navigating the website. CONCLUSION: Patient narratives as presented on krankheitserfahrungen.de provide a helpful resource, supporting cancer patients' engagement with their disease. Having access to such research-informed accounts of everyday cancer experiences was seen as a great contribution to existing available patient information. PRACTICE IMPLICATIONS: When health information websites include experiences, they should adhere to quality standards of qualitative research and encompass a wide range, so that users are able to find patients similar to themselves. Filter options are a helpful tool. A mix of written text and videos is beneficial, as users have different preferences. The inclusion of patient photographs and video interviews facilitates authenticity and closeness.

The role of the Internet for people with chronic pain: examples from the DIPEx International Project.

In this article we consider how people with chronic illness are using the internet, drawing on examples from published qualitative interview studies of experiences of chronic pain in the UK, Germany and Israel. Extracts from the interviews can be seen on the websites from the www.dipexinternational.org collaboration which publishes analyses and many thousands of video and audio interview clips on country specific web platforms. The UK branch of the collaboration has been operating for over a decade and currently includes broad based samples of qualitative interviews with patients about their experiences of over 80 health problems. The research has demonstrated that people living with chronic pain are increasingly using the web to find information, support and practical advice for self-management and also for reassurance, encouragement, to compare experiences of treatment and to offer advice and support to others. The internet is changing the way that people are experiencing illness, although access to relevant and reliable online material is not equally distributed. Those who do not speak one of the handful of dominant languages are less likely to find online experiences that resonate with their own.

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.

Medically unexplained symptoms as a threat to patients' identity? A conversation analysis of patients' reactions to psychosomatic attributions.

OBJECTIVE: Interactions between patients suffering from medically unexplained symptoms (MUS) and their physicians are usually perceived as difficult and unsatisfactory by both parties. In this qualitative study, patients' reactions to psychosomatic attributions were analyzed on a micro-level. METHODS: 144 consultations between consultation-and-liaison (CL) psychotherapists and inpatients with MUS, who were treated according to a modified reattribution model, were recorded. Linguists and psychologists evaluated these consultations by applying conversation and positioning analysis. RESULTS: When introducing a psychosomatic attribution, therapists use discursive strategies to exert interactional pressure on the patient; while simultaneously using careful and implicit formulations. Three linguistic patterns could be found in which patients subtly refute, drop or undermine the psychosomatic attribution in their reply. Moreover, in this context patients position themselves as somatically ill or justify their own life situation. CONCLUSION: The results suggest that patients interpret psychosomatic attributions and even subtle suggestions from the psychotherapists as face-threatening 'other-positionings'. PRACTICE IMPLICATIONS: When implementing the reattribution model, it should be taken into account that interactional resistance might be a necessary step in the process of the patient's understanding. Nevertheless therapists should introduce reattribution in a patient-centered rather than persuasive way and they should openly address patients' fears of being stigmatized.

[Chronic diseases, psychological distress and coping -- challenges for psychosocial care in medicine]. / Chronische Erkrankungen, psychische Belastungen und Krankheitsbewältigung -- Herausforderungen für eine psychosoziale Versorgung in der Medizin.

Due to the increase of chronic diseases within the last decades the need and demand for psychosocial treatment in medicine has been realized. This review focuses on the psychosocial aspects of chronic diseases and discusses selected topics of medical and rehabilitation psychology. Recent developments in quantitative and qualitative methods have allowed the systematic analysis of psychosocial distress and coping with chronic disease as well as the consequences on social relationships. The need for psychosocial treatment in acute care and rehabilitation can be diagnosed by differential assessment tools for coping and psychiatric morbidity. Specific approaches of psychology and psychotherapy for patients with somatic diseases have been developed and may be regarded as an integrative part of medical treatment in acute care and rehabilitation. In rehabilitation, the traditional individualistic view of psychotherapy has been broadened towards vocational integration and participation in social activities as outcome criteria. Evaluation research as well as the rehabilitation sciences have provided empirical data on psychosocial treatment of chronically ill patients. Under increasing financial restrictions and problems of the health care systems there is a need for quality assurance and the proof of scientific evidence to guarantee psychosocial treatment as an integrated part of medical care in the future.