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.