The Information Requirements of People with Cancer Where to Go After the “Patient Information Leaflet”?
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© 2005 Lippincott Williams & Wilkins, Inc., Philadelphia Claire Balmer, MSc, RGN The Information Requirements of People With Cancer Where to Go After the “Patient Information Leaflet”? KEY WORDS Information is crucial for people with cancer for both successful treatment and Cancer care rehabilitation and to facilitate user involvement and informed decision making. Internet Research has tended to concentrate on biomedical sources, such as hospital- Media produced information. There have been few inductive investigations of patients’ Naturalistic inquiry use of information available outside this environment, despite the media and Patient information Internet being identified as pervasive sources of cancer information. This article reports on a study that utilized naturalistic inquiry to explore the extent and manner in which the media and Internet are utilized as information sources by people with cancer. Results confirm that the media was used considerably by the study sample and was an important contributor to knowledge and facilitator for decision making. Participants were not passive receivers of media messages but interpreted it depending on their particular needs or their rating of the media source. Consumption of media-produced information was constrained by certain factors, such as the participants’ physical inability to access sources, and needs were not always satisfied because media discourse and “newsworthiness” restricted the reporting of what was sought. The study highlights the importance of the media and Internet as an information source for people with cancer and calls for a greater awareness of this phenomenon. uch attention is given to the information needs of access to it is vital for healthcare consumerism, user involve- people with cancer. Information is seen as crucial ment, and informed decision making.4,5 In the light of this, for treatment and rehabilitation, by relieving anx- many “patient information” initiatives have been imple- M 1–3 6 iety and promoting a sense of control. Furthermore, mented. Senior Oncology Research Nurse From the Dorset Cancer Centre, Poole Corresponding author: Claire Balmer, MSc, RGN, Dorset Cancer Centre, Hospital, Longfleet Road, Poole, Dorset, United Kingdom. Poole Hospital, Longfleet Road, Poole, Dorset, United Kingdom BH15 2JB The author has no conflict of interest. (e-mail: [email protected]). Accepted for publication November 1, 2004. 36 ■ Cancer Nursing™, Vol. 28, No. 1, 2005 Balmer It is known, however, that patients do not always find these the United Kingdom, the Department of Health is actively useful. People with cancer vary in the amount of information encouraging the integration of the Internet into cancer care they require and this may change over the course of their ill- and other healthcare arenas.6 ness.7 Ream and Richardson1 discuss how retention of infor- However, there is a deficit of research on media-produced mation is difficult during acute illness and may induce, rather information for people with cancer.13,19,26–29 The small than relieve, stress if sought or given at an inappropriate time. amount of work carried out in this area includes a study by Luker et al8 found that women with breast cancer wanted Henderson and Kitzinger12 on the media portrayal of inher- information from healthcare professionals at the time of diag- ited breast cancer, which, they suggest, gives women a con- nosis but preferred to find things out for themselves from tele- fused picture. A study by Johnson10 reports that women who vision, radio, and magazines after completing treatment. regularly read breast cancer information in magazines perceive Research about patient information has tended to focus on themselves as more vulnerable and are more fearful of cancer sources such as hospital-produced “patient information than those who do not. However, it is unclear whether expo- leaflets.” Literature exploring patients’ access to cancer infor- sure causes fear or vice versa. As such, there remains much mation outside the biomedical environment is inadequate,9 scope for such studies.16,30 despite the media and, increasingly, the Internet being identi- fied as pervasive sources of information about cancer.10–13 Ⅵ Study Methods Ⅵ The Media and Cancer: What Is The intention of this study was to examine the use and impact Known; What Is Not Known? of the media and Internet as an information source for people with cancer. An inductive approach was sought that would Cancer is ripe with metaphor and drama14–17 and is therefore gather descriptive, qualitative data, and Lincoln and Guba’s “newsworthy.”18 This is supported by the increasing number of naturalistic inquiry was deemed the most appropriate frame- cancer-related articles in popular magazines,19,20 providing work on which to base the study. Naturalistic inquiry focuses information for both people with and without cancer.10 Televi- on the social nature of the research process and takes interac- sion has the largest reach of all media.16 Its coverage of cancer tive meaning into account.31,32 It denies a single truth but is less extensively debated, although a study by Johnson and assumes multiple realities can demonstrate mutually shaping Meischke21 found that it was the preferred media source of can- influences, albeit in local and context-bound situations.31 Fur- cer information for women. Cancer is also a popular theme of thermore, naturalistic approaches support the more interpre- books, including illness narratives or “autopathographies.”22–24 tivist, sociological influences that have arisen in contemporary The Internet is the fastest growing information medium.13 media research with the recognition of audience diversity.33 Health information available on it has potentially major bene- Participants were recruited via posters displayed in a UK fits for patients.25 It appears to be particularly well-utilized by cancer center. These attracted a convenience sample of 15. people with cancer11,13 and Small and Rhodes5 discuss how the There was a gender bias toward women but good representa- sort of information it offers may be more believable for people tions of age, disease site, treatment, and time since diagnoses. with life-limiting illness who focus hope on new treatments. In There was no ethnic diversity, which reflected the population Table 1 • The Characteristics of the Participants Interview Gender Age Disease Site Treatment Received 1F44 Breast Surgery, chemotherapy, and radiotherapy 2F47 Ovary Surgery, chemotherapy, and second-line chemotherapy 3M56 Prostate Radiotherapy 4M43 Lymphoma Surgery and chemotherapy 5F58 Ovary Surgery and chemotherapy 6M64 Colorectal Surgery and chemotherapy 7M67 Prostate Radiotherapy 8F46 Mouth Chemotherapy, radiotherapy, and surgery 9F53 Lymphoma Chemotherapy 10 F 55 Ovary Surgery and chemotherapy 11 M 61 Prostate Radiotherapy 12 F 20 Ovary Surgery and chemotherapy 13 F 71 Lung Chemotherapy and radiotherapy 14 F 75 Breast Surgery and radiotherapy 15 F 59 Breast Surgery The Information Requirements of People With Cancer Cancer Nursing™, Vol. 28, No. 1, 2005 ■ 37 of the study’s geographical location (please see Table 1 for fur- reviewed as new categories were generated. The last 3 inter- ther details of sample demographics). views did not seem to produce any further categories, so data Interviews lasting between about 45 and 90 minutes were collection ceased. A thorough final review of the transcripts conducted by the author and tape-recorded. They were per- and categories was then undertaken to refine the categories and formed after consenting participants had completed at least ensure what Lincoln and Guba describe as a “‘reasonable con- first-line treatment, so the stages of suspicion of illness, pre- struction’ of the data.”31(p347) sentation, diagnosis, and treatment could be captured. Prefer- Four dominant categories were identified (Fig 1). ably, they took place in the participants’ homes (ie, a more “The pamphlets I got from the hospital went straight “natural” setting for accessing media) but participants could over my head”: Looking beyond biomedicine. choose any place that was convenient and appropriate for them The first category examined why patients looked outside the and some chose the hospital. formal healthcare environment for information and how they The interviews were very loosely structured to enable infor- attempted to mediate between media/Internet-produced and mants to refer to whatever issues they felt were important and biomedically produced information. to minimize the “interviewer effect,” in which opinions are Five participants described unhelpful experiences concerning tempered by the presence of an interviewer.34 However, they information from healthcare professionals and this caused them were based around the questions: to rely more heavily on media-produced information. For example, hospital staff gave one participant all her information • Which media-generated sources of information do people when she was first diagnosed and described herself as being “in with cancer access and avoid? a fog.” She had therefore found it incomprehensible and subse- • Why and how are they accessed? quently depended on magazine articles, television, and Inter- • What type of information is sought? net. Others criticized biomedical information for being over- •How influential is the media to people with cancer? simplified and compromising. Staff were described as “a bit cagey” by one participant, even when asked directly. This was felt to be condescending and hindered