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Cancer patients' information needs and information seeking behaviour : in depth interview study

Cancer patients' information needs and information seeking behaviour : in depth interview study
Cancer patients' information needs and information seeking behaviour : in depth interview study
Objectives: To explore why cancer patients do not want or seek information about their condition beyond that volunteered by their physicians at times during their illness.

Design: Qualitative study based on in-depth interviews.
Setting: Outpatient oncology clinics at a London cancer centre.

Participants: 17 patients with cancer diagnosed in previous 6 months.

Main outcome measures: Analysis of patients' narratives to identify key themes and categories.

Results: While all patients wanted basic information on diagnosis and treatment, not all wanted further information at all stages of their illness. Three overarching attitudes to their management of cancer limited patients' desire for and subsequent efforts to obtain further information: faith, hope, and charity. Faith in their doctor's medical expertise precluded the need for patients to seek further information themselves. Hope was essential for patients to carry on with life as normal and could be maintained through silence and avoiding information, especially too detailed or "unsafe" information. Charity to fellow patients, especially those seen as more needy than themselves, was expressed in the recognition that scarce resources, including information and explanations, had to be shared and meant that limited information was accepted as inevitable.

Conclusions: Cancer patients' attitudes to cancer and their strategies for coping with their illness can constrain their wish for information and their efforts to obtain it. In developing recommendations, the government's cancer information strategy should attend to variations in patients' desires for information and the reasons for them.
0959-8138
909-913
Leydon, Geraldine M.
c5cdaff5-0fa1-4d38-b575-b97c2892ec40
Boulton, Mary
92b1dcba-36f3-49f9-959f-1d1af4576afd
Moynihan, Clare
5830406c-b68c-4ec6-ac83-833c2af9b095
Jones, Alison
9e067acf-2d90-43b6-8722-023bc7bacd4a
Mossman, Jean
a2be1028-7595-4e92-b268-b6ca8711d658
Boudioni, Markella
09197917-3b67-45f6-87a0-a564d6c80a1c
McPherson, Klim
5278f184-8ac2-4b5f-a52b-39c9979da98e
Leydon, Geraldine M.
c5cdaff5-0fa1-4d38-b575-b97c2892ec40
Boulton, Mary
92b1dcba-36f3-49f9-959f-1d1af4576afd
Moynihan, Clare
5830406c-b68c-4ec6-ac83-833c2af9b095
Jones, Alison
9e067acf-2d90-43b6-8722-023bc7bacd4a
Mossman, Jean
a2be1028-7595-4e92-b268-b6ca8711d658
Boudioni, Markella
09197917-3b67-45f6-87a0-a564d6c80a1c
McPherson, Klim
5278f184-8ac2-4b5f-a52b-39c9979da98e

Leydon, Geraldine M., Boulton, Mary, Moynihan, Clare, Jones, Alison, Mossman, Jean, Boudioni, Markella and McPherson, Klim (2000) Cancer patients' information needs and information seeking behaviour : in depth interview study. BMJ, 320 (7239), 909-913. (doi:10.1136/bmj.320.7239.909).

Record type: Article

Abstract

Objectives: To explore why cancer patients do not want or seek information about their condition beyond that volunteered by their physicians at times during their illness.

Design: Qualitative study based on in-depth interviews.
Setting: Outpatient oncology clinics at a London cancer centre.

Participants: 17 patients with cancer diagnosed in previous 6 months.

Main outcome measures: Analysis of patients' narratives to identify key themes and categories.

Results: While all patients wanted basic information on diagnosis and treatment, not all wanted further information at all stages of their illness. Three overarching attitudes to their management of cancer limited patients' desire for and subsequent efforts to obtain further information: faith, hope, and charity. Faith in their doctor's medical expertise precluded the need for patients to seek further information themselves. Hope was essential for patients to carry on with life as normal and could be maintained through silence and avoiding information, especially too detailed or "unsafe" information. Charity to fellow patients, especially those seen as more needy than themselves, was expressed in the recognition that scarce resources, including information and explanations, had to be shared and meant that limited information was accepted as inevitable.

Conclusions: Cancer patients' attitudes to cancer and their strategies for coping with their illness can constrain their wish for information and their efforts to obtain it. In developing recommendations, the government's cancer information strategy should attend to variations in patients' desires for information and the reasons for them.

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More information

Published date: 1 April 2000

Identifiers

Local EPrints ID: 161215
URI: http://eprints.soton.ac.uk/id/eprint/161215
ISSN: 0959-8138
PURE UUID: 9e2ebf92-d001-4703-abd9-be7716194b89
ORCID for Geraldine M. Leydon: ORCID iD orcid.org/0000-0001-5986-3300

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Date deposited: 28 Jul 2010 11:14
Last modified: 14 Mar 2024 02:50

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Contributors

Author: Mary Boulton
Author: Clare Moynihan
Author: Alison Jones
Author: Jean Mossman
Author: Markella Boudioni
Author: Klim McPherson

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