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.

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.

Dying in cancer centers: do the circumstances allow for a dignified death?

BACKGROUND: Prior research has shown that hospitals are often ill-prepared to provide care for dying patients. This study assessed whether the circumstances for dying on cancer center wards allow for a dignified death. METHODS: In this cross-sectional study, the authors surveyed physicians and nurses in 16 hospitals belonging to 10 cancer centers in Baden-Wuerttemberg, Germany. A revised questionnaire from a previous study was used, addressing the following topics regarding end-of-life care: structural conditions (ie, rooms, staff), education/training, working environment, family/caregivers, medical treatment, communication with patients, and dignified death. RESULTS: In total, 1131 surveys (response rate = 50%) were returned. Half of the participants indicated that they rarely have enough time to care for dying patients, and 55% found the rooms available for dying patients unsatisfactory. Only 19% of respondents felt that they had been well-prepared to care for the dying (physicians = 6%). Palliative care staff reported much better conditions for the dying than staff from other wards (95% of palliative care staff indicated that patients die in dignity on their ward). Generally, physicians perceived the circumstances much more positively than nurses, especially regarding communication and life-prolonging measures. Overall, 57% of respondents believed that patients could die with dignity on their ward. CONCLUSIONS: Only about half of the respondents perceived that a dignified death is possible on their ward. We recommend that cancer centers invest more in staffing, adequate rooms for dying patients, training in end-of-life care, advance-care planning standards, and the early integration of specialist palliative care services.

Terminally ill patients as customers: the patient's perspective.

BACKGROUND: Consumerism in health care defines patients as self-determined, rational customers. Yet, it is questionable whether vulnerable patients, such as the terminally ill, also fulfill these criteria. Vulnerable contexts and the patient's perspective on being a customer remain relatively unexplored. The present study addresses this research gap by analyzing terminally ill patients' views on being customers. AIM: To explore the ways in which patients in palliative care refer to themselves as patients/customers, and how the patients' concepts of self-determination are related to their attitudes toward the patient/customer role. DESIGN: Qualitative interviews were conducted. Data were analyzed in three steps: narrative analysis, thematic content analysis, and typology construction. SETTING/PARTICIPANTS: Researchers recruited 25 patients via the Department of Palliative Care, University Medical Center Freiburg, Germany. RESULTS: In many ways, palliative patients contradict the image of a self-determined customer. The palliative patient role is characterized by the concept of relational self-determination rather than an unrestricted self-determination. Self-attribution as a customer still occurs when positively associated with a person-centered, individualized treatment. Thus, the customer and patient role overlap within the palliative care setting because of the focus on the individual. CONCLUSIONS: The idealized customer role cannot be arbitrarily applied to all medical fields. Palliative patients are dependent on the physician, regardless of whether the customer or patient role is preferred. Hence, self-determination must be understood in relational terms, and physicians must recognize their crucial role in promoting patients' self-determination in the context of shared decision-making.