ArticleBMJ open2018
Understanding the role of health information in patients' experiences: secondary analysis of qualitative narrative interviews with people diagnosed with cancer in Germany.
Article in BMJ open, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 30 papers.
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Who cites it
30 citing papers in PubMed.
- Effects of an Interprofessional Communication Approach on Support Needs, Quality of Life, and Mood of Patients with Advanced Lung Cancer: A Randomized Trial.The oncologist · 2021Trial
- Vaginal and vulvar cancer patient experiences of the information pathway from pre-diagnosis to treatment.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026Article
- Exploring Women's Experiences of Information Across Their Endometrial Cancer Diagnosis and Treatment: A Qualitative Analysis.Psycho-oncology · 2026Article
- A Nurse-Led Family Support Intervention for Families Living With Cancer: An Experience-Based Co-Design Study.Journal of advanced nursing · 2026Article
- Information Needs and Preferences of Men With Breast Cancer: A Qualitative Analysis of Internet Forum Posts.The breast journal · 2026Article
- 'I knew I had to drive my own bus': perspectives of patients and healthcare professionals on improving information provision to rare cancer survivors.Journal of cancer survivorship : research and practice · 2025Article
- Treatment summaries for head and neck cancer survivors: a pilot study to improving patient recall and survivorship care plans.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2025Article
- Awareness, use and perception of patient versions of clinical practice guidelines - a national cross-sectional survey among patients with a cancer diagnosis and healthcare providers.BMC health services research · 2024Article
- Prevalence and Correlates of Depressive Symptoms among Patients with Cancer: A Cross-Sectional Study.Current oncology (Toronto, Ont.) · 2024Article
- Facilitating patient-oncologist communication in advanced treatment-resistant cancer: development and feasibility testing of a question prompt list.Pilot and feasibility studies · 2024Article
- Treatment confidence and patient participation in multidisciplinary tumor conferences: A structural equation modeling approach.Cancer medicine · 2024Observational
- Health Technology Readiness amongst Patients with Suspected Breast Cancer Using the READHY-tool - a Cross-sectional Study.Journal of medical systems · 2023Article
- Women's experience of the health information process involving a digital information tool before commencing radiation therapy for breast cancer: a deductive interview study.BMC health services research · 2023Article
- Deconstructing (e)health literacy: aspects that promote and inhibit understanding of health information in breast cancer patient pathways.International journal of qualitative studies on health and well-being · 2022Article
- Being affiliated to a cystic fibrosis centre is important for parents' everyday life.Acta paediatrica (Oslo, Norway : 1992) · 2022Article
- Post-traumatic growth 5 years after cancer: identification of associated actionable factors.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2022Article
- The patient perspective on the preoperative colorectal cancer care pathway and preparedness for surgery and postoperative recovery-a qualitative interview study.Journal of surgical oncology · 2022Article
- Article
- Observational
- Cancer Clinicians' Views Regarding an App That Helps Patients With Cancer Meet Their Information Needs: Qualitative Interview Study.JMIR cancer · 2021Article
Corrections and comments
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo 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.
designThis 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.
settingInterviewees 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).
participantsWomen with a diagnosis of breast cancer, individuals with a diagnosis of colorectal cancer and men with a diagnosis of prostate cancer.
resultsThe 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.
conclusionsInformation 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.
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