How the internet affects patients' experience of cancer: a qualitative study

Abstract

Objective To explore how men and women with cancer talk about using the internet. Design Qualitative study using semistructured interviews collected by maximum variation sampling. Setting Respondents recruited throughout the United Kingdom during 2001-2. Participants 175 men and women aged 19-83 years, with one of five cancers (prostate, testicular, breast, cervical, or bowel) diagnosed since 1992 and selected to include different stages of treatment and follow up. Results Internet use, either directly or via friend or family, was widespread and reported by patients at all stages of cancer care, from early investigations to follow up after treatment. Patients used the internet to find second opinions, seek support and experiential information from other patients, interpret symptoms, seek information about tests and treatments, help interpret consultations, identify questions for doctors, make anonymous private inquiries, and raise awareness of the cancer. Patients also used it to check their doctors' advice covertly and to develop an expertise in their cancer. This expertise, reflecting familiarity with computer technology and medical terms, enabled patients to present a new type of “social fitness.” Conclusion Cancer patients used the internet for a wide range of information and support needs, many of which are unlikely to be met through conventional health care. Serious illness often undermines people's self image as a competent member of society. Cancer patients may use the internet to acquire expertise to display competence in the face of serious illness.