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    ABSTRACT: This article looks at how patients with pancreatic cancer use the Internet, and considers its potential negative effects for people with a life threatening illness. We designed a qualitative study using semi-structured interviews collected by maximum variation sampling. Respondents were recruited from all over the UK in 2009/10. We interviewed 32 people with pancreatic cancer and eight relatives/carers of people who had recently died of pancreatic cancer. In contrast to a similar study we undertook in 2004, we found that the people interviewed in 2009/10 talked about using the Internet for health information as if it were a routine and unremarkable part of life. Patients gave few examples of harm from using the Internet, or of damage caused to their relationships with health professionals. We also found that patients and family carers were using a strategy to handle alarming information found online, with patients asking partners and family to filter what they found. In conclusion, concerns about serious negative effects of using the Internet for health information may be ill-founded, even when the Internet is used by patients with serious life threatening illness. Clinicians may worry that people will find unwanted or contradictory information, but it is probably counter-productive to try to steer people away from the web. Similarly, policy makers have focused on regulating the factual content of information on the web, but we found that it was the consequences of stumbling on factually correct, yet unwelcome, information that concerned the patients and their families in this study. Good practice guidelines and quality markers for health information may need to pay more attention to website design and user routing as well as factual content.
    Policy and Internet 03/2012; 4(2). DOI:10.1515/1944-2866.1162
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    ABSTRACT: Purpose: The concept of providing personalised care plans for cancer survivors is receiving increasing attention; a recognised element of a care plan is to provide an indication of the risks and consequences of treatment. This paper reports health care professional (HCP) response to providing cancer survivors with information on potential late effects of their cancer treatment. Methods: Eighteen HCPs from five cancer centres and three general practices in the UK completed semi-structured interviews which were digitally recorded, transcribed and qualitatively analysed using framework analysis. Results: HCPs' view of health care was that it is currently focused on acute care and needs are responded to as they may arise, including those which are late effects of cancer treatments. The concept of pre-empting a discussion of potential late effects during the survivorship phase was felt to be discordant with this approach and could impact on adjustment to life after cancer treatment. Conclusion: Providing cancer survivors with information on potential late effects requires further consideration. Evidence for survivor preference for late effect information and the benefit afforded to survivors who receive it could inform the practice of HCPs. If a culture of proactivity is to be encouraged regarding discussions of future potential risk, HCPs may need support in considering ways of presenting survivors with reality whilst being mindful of their need to retain hope during the survivorship phase.
    Supportive Care in Cancer 04/2013; 21(9). DOI:10.1007/s00520-013-1806-7 · 2.36 Impact Factor