The Information Requirements of People with Cancer Where to Go After the “Patient Information Leaflet”?

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 identified as pervasive sources of information about cancer.10–13 Study Methods 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 decision making. Analysis However, all but 3 interviewed were keen to express their faith in information they had received from the majority of Interviews were analyzed by “constant comparison,” involving healthcare staff. Nevertheless, a note of fatalism was detected, simultaneous data collection and analysis with continuous as though some felt that they had no choice but to rely on staff refinement.31 As interviews were transcribed, emerging data and that information from other sources might lead to confu- units were categorized and interpretations were repeatedly sion and doubt:

Figure 1 ■ Thematic diagram of emergent categories after constant comparison.

38 ■ Cancer Nursing™, Vol. 28, No. 1, 2005 Balmer I just decided that the people here are the experts. I’ve When participants felt unwell, because of disease progression got to trust them because if I don’t what else can I do? or the iatrogenic effects of treatment, accessing some sources, There’s no point in taking yourself down other avenues such as books and the Internet, became less straightforward: if you’ve elected to do what the consultant’s told you. I just found the internet so laborious. And it was diffi- You don’t want to read too much in case you start going cult to sit [in the library] for a long time. “mmm...?” (laughs). I’d really like to read that and I will do. Yeah, when I get Participants were surprised when healthcare staff had not my brain back (laughs). It’s very difficult to get into a accessed media-produced information themselves. They felt book at the moment. staff should know and have an opinion about information in Also, because participants were at home more, they were the public domain: exposed to television programs they would not normally I was a bit cross that the doctors didn’t seem to know watch, such as chat shows and soap operas. The timing of pro- what I knew and couldn’t discuss it with me. grams also influenced access. At the start of the study, the BBC There was also a strongly held belief that staff were obliged screened a documentary series entitled “Living With Cancer” to bring things into, what was described as, “the public arena.” in the United Kingdom which followed the experiences of Many participants expressed concern that the public was ill- people with different cancer diagnoses. Although this was educated about cancer and felt it was the responsibility of described by more than 1 participant as “excellent,” none had healthcare staff to disseminate information through accessible watched the programs depicting their own diagnosis. One par- sources, such as the media, and keep the media informed so ticipant gave an insight into this: that the “correct” message was publicized. It was on a bit too late at night. You had to go to bed on For most participants media-produced information was a it (laughs). That was off-putting. supplement rather than a replacement to biomedically pro- On completion of treatment, participants differed in the duced information and it was important to them that health- amount of information they required. A minority felt it was care staff endorsed their information seeking. Nevertheless, the more constructive to “move forward and leave it all behind” media was influential and was used to inform decision making, but most felt they would always have an interest and continue clarify points, or promote further discussion. to seek information. Many of these participants described a “For obvious reasons, I watch a lot of daytime television responsibility to people with new cancer diagnoses and felt now”: Managing the search for media-produced information. they had an obligation to stay informed, so they could offer The second category described the process patients followed support and advice to others. in their search for media-produced information and the pro- For some, information from the media had been problem- moting or limiting factors they experienced. atic at times when they had felt particularly sensitive and vul- Participants were keen that cancer information should be made nerable. However, all felt that information should be available available to the healthy population through accessible sources, from many different sources so that people could access as such as the media. Paradoxically, they had not become sensitive to much, as little, and whatever type of information they wanted. such information themselves until they became ill. Knowledge “It’s nice to read about someone who’s had the same they had prior to diagnosis principally came from the experiences thing as you”: What is sought? of people they knew and what one participant described as “gen- Those interviewed looked for particular types of informa- eral knowledge.” The few who had seen cancer information in the tion from the media. In participants’ own words, these were media had been admittedly indifferent to it and learnt little: “technical stuff,” “up and coming treatments,” “life stuff,” and It’s a bit like buying a hi-fi. If you’re not actually doing “other peoples’ stories.” it, you’re not interested and you don’t become an expert. One participant summed up “technical stuff” as “What’s I hadn’t really taken in information from programmes or reported about the actual treatments. What it involves, the anything particularly. I’d read articles in the paper from success rates and everything.” Perhaps surprisingly, this was time to time but it wasn’t something I’d really persued. I’d searched for least. Arguably, this information is more readily met people with breast cancer and things but I didn’t really available from the formal healthcare environment and partici- know how chemotherapy was administered or anything. pants may have received what they needed. Some complained This changed as soon as participants knew their diagnosis. this was insufficiently reported in the media. They required in- From then until the start of treatment they sought as much depth information tailored to their individual cases. Further- information as possible. Much less was accessed when partici- more, “technical stuff” was more adequately available from pants were receiving treatment. Two participants claimed to websites and books than newspapers, magazines, and televi- have received all the information they wanted from staff at this sion. As discussed, accessing such sources sometimes posed time, whereas others described feeling more knowledgeable by practical problems for participants. then and more able to manage the situation. However, as dis- Participants talked in depth about “up and coming treat- cussed, some had a fatalistic attitude and appeared reluctant to ments” and new developments they had seen/heard reported in seek information that might contradict the path they had the media. They had a keen interest and were optimistic about agreed to follow. the future:

The Information Requirements of People With Cancer Cancer Nursing™, Vol. 28, No. 1, 2005 ■ 39 If I hear anything on the news, like about a new wonder When I became computer literate and got on the web, I drug or anything, I rush in to hear about it . . . It’s very had real information. Having the full information and inspiring to know what’s going on with all the new treat- being able to access it was immensely helpful. (Author’s ments and that. italics) Some were interested for their own benefit, in case their Its speed was also valued. Information could be accessed cancer relapsed, whereas others wanted to know for the sake of whenever required and it was seen to hold constantly updated future patients, especially if they thought these might include “living documents” with more relevance than books. A couple family members and friends. However, some felt frustrated of participants mentioned drawbacks. For example, one par- because television, newspaper, and magazine articles did not ticipant had been led to “some pretty strange places” when he tell them enough. These participants tended to turn to the tried to access information about side effects of prostatectomy. Internet for more in-depth information. Others were disap- Another recognized the commerciality of some information. pointed when they discovered that new developments were not Nevertheless, the information provided was not doubted: necessarily appropriate for them. The internet has certainly been the most important “Life stuff” was information about coping with the day-to- source. Yeah, definitely. Because you can’t always believe day reality of living with cancer, including practical and emo- what’s in the newspaper, anyway. tional support. Participants found this lacking in hospital-produced information and frequently sought it from the media. The print media was seen as useful but participants were far Again, many were disappointed because they were unable to more sophisticated in identifying journalistic bias and financial find specific information there either. Two male participants incentives. Participants also assumed a hierarchy within the recognized a gender issue concerning “life stuff.” They felt print media itself. For example, information in broadsheet that, as men, they were “too independent” to need such infor- newspapers was seen more “truthful” than that in tabloids. mation. One participant had a wife with breast cancer and he The least reliable source for participants was drama and the spoke about the different information they required: least helpful dramatic productions were soap operas. These were referred to as “melodramatic,” “superficial,” “rubbish,” When she was diagnosed I wanted to know what sort of and “not to be believed.” Despite this, they were the most cancer she had right down to the finest detail and she emotive media source. Two participants admitted being really didn’t want to know. She was more interested in, I “frightened” by what they had seen portrayed but the overall suppose, the non-technical, feminine side of it. Such as, reaction was anger, particularly when characters were “killed what she was going to do with one breast, was she going off quickly” or when issues were evaded. For example, a char- to get reconstruction, how was she going to live her life. I was more interested in what is it? What’s the surviv- acter in the BBC soap opera “Eastenders” was singled out by 3 ability of it? What’s the chance of it spreading? Where’s participants who were angry about her quick and uneventful it going to spread to? recovery after fictional breast cancer treatment: As such, the female bias of the sample may explain why “life The issues weren’t addressed enough. She had breast cancer and then she just got over it. A year later I still stuff” was accessed more than “technical stuff.” haven’t got over it. I was quite annoyed about that. “Other people’s stories” about cancer experience were frequently sought and seen as very useful: Once you’ve had it, it never goes away. It’s such a long process, getting back on track. Especially when you’re There’s a lady with non-Hodgkin’s lymphoma and she older. So, she should have suffered more (laughs). was writing [in local newspaper] a sort of celebration of The 12-year-old son of one participant had been convinced her life; how she got through it. She lost her hair but it’s that she was going to die when she told him she had cancer. growing back and she was talking about going on holi- She was certain that his knowledge was gained from soap day. Yes, that was interesting. In fact, I think that’s been operas and was angry that “a very serious subject that affects more than interesting and really quite inspiring. so many people is used just because actors want to leave a Nonetheless, most participants realized that “other people’s series.” Another participant was angry that a character in stories were just that; concerning people who had had different ITV’s “Coronation Street,” was made to look ill by wearing a treatments, experiences, and outcomes. Therefore, despite being dressing gown and no makeup when she had cancer. She felt inspirational, this information was not necessarily applicable. this contradicted her own situation and the character’s per- “You can’t always believe what’s in the newspaper”: The sonality. However, a participant who had been an advisor for media hierarchy. a cancer story depicted on a children’s TV drama gave an This category described the observation that some media insight into this: sources were considered to be “better” and more credible than [The producer] was saying, “How can I get it to look others. real?” and “Can she have a drip?” and we said she The Internet was consistently seen as the most trustworthy wouldn’t have a drip but he was trying all these things source. Two participants bought computers when first diagnosed to make it look like cancer. I suppose that’s the prob- specifically for accessing cancer information and the information lem they have in television, making somebody look sick it contained was always considered valid and valuable: because you don’t necessarily, do you? . . . I think that’s

40 ■ Cancer Nursing™, Vol. 28, No. 1, 2005 Balmer one of the stereotypes television finds it difficult to deal Chandler40 draws on the work of the media theorist Marshall with. McLuhan to argue that the written and printed word is privi- leged over speech in our society. Furthermore, Höijer41 and Alasuutari42 discuss the disparaging view that many people Discussion have of television viewing. This may be why the print media and Internet were trusted more than drama. Soap operas were Limitations of the Sample given the lowest status but they were not ignored. Most participants had watched them and been influenced, if negatively, This study explored the experiences and opinions of only 15 by their portrayal of cancer. In her comprehensive study of adults with cancer treated at one UK cancer center. Impor- media interpretation, Graber43 also found that sources consid- tantly, there was no ethnic diversity and, because of the small ered incredible were not totally rejected and lack of credibility sample size, no data were collected about participants’ social was not a disincentive to learning from them. British soaps are class or education. It is appreciated that different social classes seen as representative of real life.44 As Hobson explains, “they and ethnic groups may access and understand media informa- are precisely a way of understanding and coping with problems tion differently. The sample included both men and women which are recognized as “shared”. . . both in the programme and drew from a large age range. However, again because of the and in ‘real life’.”45(p608) Participants’ anger and incredulity was small sample, analysis by gender or age was not formally heightened when this supposedly “realistic” portrayal contra- undertaken and might have yielded interesting differences. dicted their experience, giving “healthy” viewers the wrong Nevertheless, interesting points are raised, for example, all ages impression of living with cancer. This has been explored by had accessed all the media sources studied. The participants Gledhill,46 who argues that representations in the media are were self-selecting and there are inherent problems associated sites of conflict and negotiation over what is understood as with this. For example, it was not known what motivated par- “real” and of cultural value. ticipants to apply and an unrepresentative sample might have responded.35 Nevertheless, it was valuable to interview people with knowledge and insight. The Media: A Site of Information Consumption? Media Authority? There is increasing recognition of consumerism in healthcare, which would prove impossible to encourage and support with- It became evident that all participants had accessed a variety of out adequate access to information for patients and the pub- media sources and the media was a key information source for lic.5,47,48 Reasons posited for this include rising healthcare them. Some admitted not realizing until the interview just costs necessitating rationing and encouraging individual how frequently they used it. Other self-proclaimed “noninfor- responsibility,5,17 social and cultural changes, such as the ero- mation seekers” described many media sources deliberately sion of professional dominance5,49 and recognition of what accessed for information. Participants had not passively Williams and Popay50(p118) call “lay knowledge and the privi- received media messages.33,36 They did not believe everything lege of experience.” Furthermore, the media has been identi- they read/saw and recognized journalistic and financial influ- fied as a “consumption site” for health.20(p187) ences. They accepted or rejected information depending on However, as Small and Rhodes5 describe, a “true” consumer their own situation and experience and awarded sources with is able to exert control through choices and change from one different ranks of credibility. product or service to another. Critics of healthcare con- All participants had accessed the Internet and it was seen as sumerism question whether it is ever more than tokenism, the most trustworthy and informative source. Silberg et al37 particularly in a hospital setting with its inherent economical detail how traditional print publishing has standards developed constraints, biomedical dominance, and reliance on technol- over centuries by which to judge quality and differentiate ogy.46,51,52 between, for example, education and promotion or evidence In searching for information from alternative sources, par- and opinion and how it may be difficult to distinguish between ticipants were arguably “good consumers” of healthcare.47(p3) these on the “new” Internet. Youngs and Boyd-Barrett38(p378) However, because media and Internet searching started at discuss how the Internet transcends the “vertical system” of legit- diagnosis when they may have been most vulnerable and was imacy apparent in traditional media, instead of providing a often prompted after healthcare staff and biomedical informa- “horizontal communications sphere.” This might have been tion had let them down, this definition is contentious. Media- attractive to those who found other information lacking in detail produced information was usually an adjunct rather than alter- or who felt “let down” by healthcare staff. Sikorski and Peters39 native to healthcare-produced information. The search for it suggest that Internet use can be frightening and frustrating to ceased somewhat when participants were receiving treatment people with cancer who are desperate for information. They and were able to rely on staff. The endorsement of staff was argue that those who access it might already be the most anxious important, both of information obtained and information and demoralized patients but this did not appear to be the case sources. In keeping with Karpf’s53 analysis, the media did not in this sample. When participants had information they felt they challenge medical dominance and may even have colluded to could trust, their fears were allayed and they felt empowered. strengthen it. Furthermore, participants felt it was the

The Information Requirements of People With Cancer Cancer Nursing™, Vol. 28, No. 1, 2005 ■ 41 responsibility of healthcare staff to advise the media, thus per- For the majority of participants, “other people’s stories” were petuating this cycle. useful and sometimes inspirational. Bury49 describes such per- Difficulties experienced in accessing some sources due to ill sonal stories as an attempt to articulate the association between health, an altered body image or emotional vulnerability also the body, self and society and Williams and Popay50(p123) sug- impeded true consumerism. However, the fatalism detected in gest that they address aspects of living with illness that are not some accounts of relying on healthcare-produced information addressed by medicine, such as “Why has this happened to may have indicated ambivalence to these constraints. Perhaps me? Why has this happened now?” They explain, a more participatory role would have been preferable but for A person who has cancer may have some interest in the practical limitations and a reluctance to challenge medicine. behaviour of her or his cells and the impact of Some participants called for greater health promotion. They chemotherapy upon them. However, she or he needs to were adamant that the media had an important role in this and make sense of a predicament in terms of the narrative of felt that healthcare professionals should play a part in educating her or his own life.(p133)

others via the media. Some also felt a personal responsibility for 29 imparting their own knowledge and experience. However, cam- Seale argues that the media values stoicism and pragma- paigns aimed at changing individuals’ behavior have been iden- tism in its portrayal of men with cancer. This was reflected by tified as flawed.54 As previously discussed, health promotion 2 male participants who rejected information about emotional assumes a distinction between consumers who require some- and psychological issues, such as “life stuff” and “other people’s thing and providers who supply it. Research into both cultural stories.” Also, Internet use was also the greatest amongst men, media effects and health promotion indicates that it is too sim- from which information about “technical stuff” and “up and plistic to assume that individuals’ actions are motivated solely by coming treatments” was usually accessed. Some participants considerations of health needs that the media can provide with- themselves commented on access to different information by out acknowledging the complexities of cultural obligations, crit- different genders. However, because of the small sample size, ical reasoning, and power negotiations.33,46,47 The participants conclusions about gendered media use cannot be drawn from themselves contradicted their request because no one had delib- this study. Participants may have been influenced by “cultural stereotypes about gender specific behaviour,” as suggested by erately accessed the media for information before their diagno- 29(p108) sis. As they admitted, they had not had the interest. Seale because men did access information, such as “other people’s stories,” albeit from Internet chatrooms rather “Newsworthiness” and Media Discourse: than from magazines. Commentators have identified a bias in media reporting of Constraining Factors for People With certain types of cancer above others.29,56 Although some found Cancer? detail lacking, all participants were able to find information Participants accessed the media for particular types of infor- about their particular diagnosis, and media portrayal of people with cancer was also criticized as unrealistic and disempowering, mation but were often disappointed by what was offered. 30,57 Information available was constrained by principles of news- particularly to women. However, for these participants, any worthiness and media discourse about cancer. For example, representation seemed to be more valuable than none at all. they described “technical stuff” as too general and information about “life stuff” lacking. According to Lupton,16(p33) newsworthy health stories include “dramatic research discoveries” Conclusion and “personal dramas.” In keeping with her argument, participants found it easiest to access information on “up and coming For this sample, the media was used considerably throughout treatments” and “other people’s stories” from the media. the experience of living with cancer. Although some sources Media reports are not objective but represent socially con- were trusted more than others, it was seen as an important structed beliefs.15,16,30,36,55 Medically “worthy” information is contributor to knowledge and facilitator for decision making. not necessarily “newsworthy.” Instead, items reported are more Participants were not passive but engaged with, and inter- likely to reflect their topicality, idiosyncrasy, or controversy, preted, the media depending on, for example, their particular and journalists are constrained by time, space, editorial deci- needs at the time or their rating of the media source. sions and lack of specialist knowledge.16,18,55 Participants were Tr ue consumption of health information through the media eager to access reports on “up and coming treatments” but was, however, constrained by certain factors, such as the par- often found them too brief or had difficulty discerning what ticipants’ physical inability to access sources at certain times. was applicable to them and what was not. Lupton and Chap- Furthermore, their needs were not always satisfied because man55 discuss this in their analysis of news coverage of health media discourse and “newsworthiness” restricted the reporting issues. They argue that such information is often confusing or of what they were looking for. contradictory, relying more on imagery and drama than on This study provides a preliminary investigation into the detail. They suggest that the “‘miraculous’ nature of medical extent and manner in which the media and Internet are uti- breakthroughs”(p92) not only is presented in an attractive and lized as an information source by people with cancer and has exciting way, thus creating interest, but also achieves more cov- highlighted the need for further investigation. The sample was erage because of its “newsworthiness.” small and geographically discrete, making generalization from

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