Background: People with cancer are increasingly turning to the internet to find information and support. However, little is known regarding the use of the internet and how this impacts patients’ cancer experiences and their interactions with, and within, the healthcare system.
Purpose and objectives: The overarching purpose of this dissertation is to explore the ways that patients newly diagnosed with cancer use cancer-related internet information (CRII) and the role it plays in interactions with the healthcare system. The specific objectives were to: (1) qualitatively explore the content of commonly searched websites from a critical nursing perspective; (2) explore patients’ prompts to use CRII and how CRII informs the ways in which patients interact with healthcare professionals and healthcare services, and (3) document what CRII is accessed and the patterns and frequency of use.
Methods: An embedded mixed methods study was conducted using interpretive description as the overarching methodology. Date sources included: (1) a qualitative review of 20 cancer websites; (2) 19 individuals newly diagnosed with cancer, who each took part in two in-depth interviews and a brief survey; and (3) 21 healthcare professionals who engaged in three focus groups (n=17) and in-depth individual interviews (n=4).
Results: The dominant discourse in the websites reviewed focused on empirical information about treatment, prognosis, and cure. A dearth of sociopolitical, ethical, personal, and esthetic information was noted. Thus, when seeking CRII, patients predominantly find empirical and biomedical information.
The qualitative interviews with patients revealed three key themes that characterize how patients used CRII: (1) person in context, (2) management of information, and (3) managing relationships with healthcare professionals. These themes explain how patients mobilized CRII to manage their patient experience. Patients described CRII as an important resource to process information, make decisions about their illness, and make sense of their disease. Patients also sought CRII to complement and reinforce information and support provided by healthcare professionals.
The interviews and focus groups with healthcare professionals revealed two key themes with respect to their views of CRII use. These themes relate to healthcare professionals’ perceptions of patient use of the internet to manage their pragmatic concerns and priorities as well as to navigate processes and practices of the healthcare system. Healthcare professionals found that CRII could modulate patients’ interactions with the healthcare system. Healthcare professionals also acknowledged key points in the cancer trajectory where information may be lacking or where patients may have less informational support; participants felt that CRII served as a beneficial resource to address these gaps. Although healthcare professionals were supportive of patient use of CRII to meet cancer information needs, they also described concerns regarding patients finding and using untrustworthy information.
Conclusions: Together, the findings from this dissertation research inform an understanding of how people with cancer use CRII to manage their cancer experience and interact with healthcare professionals and services. Findings highlight the importance of information diversity in the midst of a lack of holistic and varied information presently online. There is also a need for nurses and other healthcare professionals to be aware of the information that is available online and to understand what patients are accessing. Communication about CRII between patients and healthcare professionals may also strengthen areas of patient education that are lacking as well as encourage healthcare professionals to raise key topics of interest.
Implications for Practice: There is clearly a growing need for dialogue around pervasive technologies and the nursing role in assessing and directing patients to holistic information. Oncology nurses are well situated to take the lead in their multi-disciplinary care teams to engage patients about their CRII use and to explore the tensions experienced by clinicians surrounding CRII use. CRII use is a growing trend amongst patients across all healthcare settings, and nurses are well positioned to initiate discussions and be leaders in practice. Future research is warranted to expand on the link between CRII use and the utilization of health services, the role of CRII for those in rural areas compared to those in urban areas, and the role of the family in patients’ mobilization of CRII in their cancer experience.
Identifer | oai:union.ndltd.org:uottawa.ca/oai:ruor.uottawa.ca:10393/37222 |
Date | January 2018 |
Creators | Kristen, Haase |
Contributors | Thomas, Roanne |
Publisher | Université d'Ottawa / University of Ottawa |
Source Sets | Université d’Ottawa |
Language | English |
Detected Language | English |
Type | Thesis |
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