How the internet affects patients' experience of cancer: a qualitative study
BMJ 2004; 328 doi: https://doi.org/10.1136/bmj.328.7439.564 (Published 04 March 2004) Cite this as: BMJ 2004;328:564
- Sue Ziebland, senior research fellow (Sue.ziebland{at}dphpc.ox.ac.uk)1,
- Alison Chapple, senior research fellow1,
- Carol Dumelow, senior research fellow1,
- Julie Evans, senior research fellow1,
- Suman Prinjha, senior research fellow1,
- Linda Rozmovits, freelance research consultant1
- DIPEx Research Group, Department of Primary Health Care, University of Oxford, Institute of Health Sciences, Oxford OX3 7LF
- Correspondence to: S Ziebland
- Accepted 11 January 2004
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.
Footnotes
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Contributors AC, CD, JE, SP, LR and SZ collected interviews and contributed to the final version of the paper. SZ had the idea for the paper, analysed the data, drafted the paper, and is guarantor for the study.
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Funding SZ's post was funded by Cancer Research UK when this paper was written (she is now funded by CRUK, DIPEx, and the University of Oxford). The research for the DIPEx cancer modules was funded by the Citrina Foundation, the Department of Health, NHS National Screening Programme, NHS Direct Online, and Macmillan Cancer Relief.
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Competing interests None declared
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Ethical approval The DIPEx studies have been approved by Eastern MREC, reference 99/5/17
- Accepted 11 January 2004