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Abstract

Nearly 40% of Canadians will be diagnosed with cancer in their lifetime, and people with cancer are increasingly turning to the Internet to bolster support and information received from health-care providers. However, little is known about the role of the Internet in patients’ interactions with the health-care system. The goals of this study are (1) to qualitatively explore the content of commonly used websites from a holistic nursing perspective, (2) to explore the prompts to use the Internet and how it informs the ways patients utilize and interact with health services, and (3) to document the types of Internet resources and amounts of usage. This study is guided by a constructivist mixed methods design. Interpretive description will guide the overarching qualitative component, including an analysis of data from commonly used websites and interviews with 16 newly diagnosed individuals. Open-ended interviews will clarify, through exploration, the role of the Internet in participants’ health system interactions. A survey of Internet use will add insight and depth about where, when, and how participants use the Internet. All interviews and website data will be analyzed using thematic analysis. Descriptive statistics will illustrate a summary of Internet usage. Triangulation of findings will provide oncology nurses and interdisciplinary team members with insight into how patients’ use of the Internet informs their use of health services. Methodologically, this study advances the use of qualitative methods for websites analysis, on which relatively little has been documented.

Keywords

oncology nursing qualitative research mixed methods interpretive description

Introduction

Cancer is the most common disease in Canada, and 40 % of Canadians are expected to be diagnosed with cancer in their lifetime (Canadian Cancer Statistics [CCS], 2014). A cancer diagnosis involves complex treatment and surgeries leading to disturbances in normal bodily functions, body image, and basic eating habits (Beaver et al., 2010; McMullen et al., 2011). Although the physical consequences are profound, the psychosocial implications can be equally distressing (Carlson & Bultz, 2003). These pressing multidimensional needs frequently exceed the capabilities of health-care providers (HCPs), leaving individuals on their own to seek and find information (Harrison, Young, Price, Butow, & Solomon, 2009; James et al., 2007).

For many people, the Internet has become a key source of health information due to its accessibility and ease of use (Castleton et al., 2011; McHugh et al., 2011). Currently, it is estimated that 8 of 10 Canadians have Internet access and average 45 hr of Internet use a month (Canadian Internet Registration Authority, 2012; Internet World Stats [IWS], 2014). For individuals with cancer, Internet Cancer Information Resources (ICIRs) are used for informational, community, networking, and communication purposes and can readily address their queries, whenever they require (Eysenbach, 2003a). However, little is known about how the reliance on ICIRs shapes patients’ interactions with the health-care system and it requires further clarification.

Study Purpose

The growing reliance on ICIRs for health information and the frequently unmet information needs of individuals with cancer instigates a need to better understand the role ICIR plays when individuals with cancer interact with the health-care system. Guided by a mixed methods approach, the purpose of this study is to clarify the use of ICIRs by patients newly diagnosed with cancer and lend insight into the role it plays in interactions with the health-care system.

Literature Review

Cancer Information Needs and the Health-Care System

For most people, a diagnosis of cancer is highly distressing, given its life-threatening nature and complicated trajectory (Bowles et al., 2008; Hall, Gray, Browne, Ziebland, & Campbell, 2012). The potential for numerous treatments and multidisciplinary involvement adds further complexity to the experience of patients and families. Physically, cancer and its treatments can have debilitating physical side effects, including but not limited to severe nausea, loss of appetite, extreme fatigue, impaired sexual function, limited mobility, and pain (Gerber, Solomon, Shaffer, Quinn, & Lipton, 2007; Kirschning & von Kardorff, 2008; Urowitz et al., 2012). Equally pressing are the psychosocial concerns, including difficulty adjusting to bodily changes, fear of surgical complications, and feelings of vulnerability and inadequacy (Soerjomataram et al., 2012; Taylor, Richardson, & Cowley, 2010). Individuals with cancer also report a host of unmet needs in both of these domains, including those that are psychological, informational, and psychosocial. Unmet needs are also connected to disruptions in activities of daily living (Carlson, Waller, & Mitchell, 2012; Harrison et al., 2009; Puts, Papoutsis, Springall, & Tourangeau, 2012).

Simultaneously, access to information is a frequently cited source of concern for people with cancer (Carlson et al., 2012). At the time of diagnosis, individuals are likely to experience distress, anxiety, and frustration (Harrison et al., 2009; Holland & Alici, 2010), with informational needs among the most frequently left unmet (Harrison et al., 2009; Swash, Hulbert-Williams, & Bramwell, 2014). Furthermore, in a recent systematic review of over 770 patient-centered interventions, Coulter and Ellins found that access to high-quality information increased patients’ acceptance, knowledge, and ability to cope with illness (Coulter, 2014; Coulter & Ellins, 2006, 2007). Furthermore, information needs are of particular interest as previous studies suggest that limited access to timely information can be distressing and lead to increased use, misuse, and avoidable reliance on health services (Dubois & Loiselle, 2009; Harrison et al., 2011). In turn, it has been suggested that attending to psychosocial and informational needs early (e.g., at the time of diagnosis) may reduce health service use (HSU) throughout the trajectory of care, ultimately reducing health-care costs (Carlson & Bultz, 2004; Zabora, BrintzenhofeSzoc, Curbow, Hooker, & Piantadosi, 2001).

Moreover, the context of the Canadian health-care system includes ongoing budgetary restriction, where HCPs are challenged to provide care that is patient centered and accessible (Milne, Sheeran, Holmes, Tidhar, & Aranda, 2012). This often leaves individuals to fill the gaps in supportive treatment and care (Sutcliffe, 2011). In this milieu, ICIRs are very promising, particularly with the growing ubiquity of Internet use (IWS, 2014; Murray, Burns, SeeTai, Lai, & Nazareth, 2005). Although there is growing interest in the multifaceted impact of ICIRs, to date, there has been little exploration of patients’ perspectives about the ways in which ICIR informs their interaction with the health-care system.

E-health and ICIRs in Cancer Care

E-health is a term widely used to describe the use of technology in health care and can include the use of any interactive technology, from telephones to computers, in any aspect of health care intended to improve patient care (Cote, 2007; Oh, Rizo, Enkin, & Jadad, 2005). The Internet, as one modality of e-health that is particularly consumer focused, is now in the homes of 80% of Canadians (StatsCan, 2009). The open Internet differs from other types of tailored web-based interventions, which are designed to be structured, self-guided, or human-supported websites with the intention of supporting decision-making, symptom management, behavior change, or some other aspect of health or mental health (Barak, Klein, & Proudfoot, 2009). Alternatively, the open Internet provides information and support of the patients choosing, at their own pace and on their own terms.

Similar to the general population, the use of ICIRs by individuals with cancer is also growing. The popularity of Internet use by those with cancer is supported by numerous surveys, for example, a recent American survey found 63% (n = 500) used the Internet to search for health information (Castleton et al., 2011). In the Canadian context, a 2014 survey of 411 individuals attending a Canadian cancer clinic for posttreatment follow-up found that although their providers were the most trusted source of information, the Internet was the second most preferred source, with 80% reporting regular use (Shea-Budgell, Kostaras, Myhill, & Hagen, 2014).

Beyond unparalleled accessibility, there are numerous reports about what motivates patients to use ICIRs for health information. Some patients report turning to the Internet when their preferred source of information (their doctor or nurse) is unavailable (James et al., 2007), to prepare for/cross-check information from HCP consultations (Castleton et al., 2011; Haase, Strohschein, Lee, & Loiselle, in press; Loiselle et al., 2013), and to gain a sense of confidence around cancer information (Ziebland et al., 2004), whereas others report using the Internet when dissatisfied with HCP advice (Tustin, 2010). However, a great deal of information on the Internet is also of questionable quality and relevance, which is a concern cited by HCP and patients (Deshpande & Jadad, 2009; Lam, Roter, & Cohen, 2013; Verma et al., 2006). Because of the ubiquitous dependence on the Internet, further study is required to explore patients’ experiences using ICIRs and how it informs how they use health services (Eysenbach, 2003b; Leykin et al., 2011).

Although studies have sufficiently documented that ICIRs use is prolific among those with cancer, few studies go in-depth to illuminate the intricacies of ICIRs use from the perspective of the patient or its role in interactions with the health-care system. For example, in one eminent qualitative investigation into the role of Internet use by individuals with cancer, Ziebland and colleagues (2004) conducted a narrative analysis and interviewed 175 men and women aged 19 to 83. The authors found that participants used the Internet to become more competent and “make sense” about their disease. Participants described the rationale for Internet use as twofold, so they could display competence to their HCP and to validate the advice they were receiving from their HCP. A gender analysis of this study revealed that men were more fixated on using ICIRs to learn more about physical ailments, and women more interested in emotional and social support (Seale, Ziebland, & Charteris-Black, 2006). Thusly, men’s use of ICIRs tended to focus on informational sources, whereas women relied upon networking or social support sites, which has been documented elsewhere (Dickerson, Boehmke, Ogle, & Brown, 2006; Dickerson, Reinhart, Boemhke, & Akhu-Zaheya, 2011). The role of ICIRs in interactions with the health-care system or relationships between types of health-care services used resultant of ICIRs use was not explored.

Role of ICIRs in Interactions With the Health-Care System

The role of ICIRs in interactions with the health-care system is of interest due to patients’ growing use of the Internet and how this might impact the quality and quantity of their HSU (Cline et al., 2007). Several reports indicate physicians are anxious about patients’ use of the Internet, the impact on patient consultations, and the ability for patients to discern appropriate and reliable information (Ahluwalia, Murray, Stevenson, Kerr, & Burns, 2010; Newnham et al., 2005; Urowitz et al., 2012). In consideration of these misgivings, providers’ responses to Internet information seeking have been categorized in three ways: (1) feeling threatened (health professional centered), (2) collaborating with the patient by obtaining and analyzing the information (patient-centered approach), and (3) guiding patients to reliable websites (prescribing information; McMullan, 2006).

In the context of cancer, the use of ICIRs is growing. People with cancer report using the Internet to help facilitate encounters with HCP (Dickerson et al., 2011) and to verify information (Bylund, Gueguen, D’Agostino, Imes, & Sonet, 2009; Loiselle et al., 2013) but will only discuss this information if they perceive sufficient trust with their provider and ample time (Kirschning & von Kardorff, 2008). However, patients do expect HCP to acknowledge their information and assist them in making sense of it (Bylund et al., 2009). Furthermore, one frequently documented impetus for ICIRs seeking is a lack of informational support from providers (Dolce, 2011). Whereas patients may feel comfortable with sharing information (Newnham et al., 2006), many reported sometimes or never sharing ICIRs with their oncologist, due to fear of judgment from their oncologist (Bylund et al., 2009; Imes, Bylund, Sabee, Routsong, & Sanford, 2008).

Oncology health professionals have also reported mixed reactions to ICIRs. A survey of oncologists (n = 226) found most were accepting of patients’ use of the Internet, with 91% believing it could cause harm, but 56% generally supportive of information seekers (Newnham et al., 2005). Furthermore, an in-depth qualitative analysis with multidisciplinary oncology team members (n = 16) found that several providers had concerns about ICIRs demanding too much of their time in patient consultations (Haase & Loiselle, 2012). In a qualitative secondary analysis of patient and provider insights of the same ICIRs, the main point of divergence was on the patients’ view that ICIRs would enhance patient consultations and relieve time pressures, whereas providers felt it would be too time-consuming (Haase et al., in press). This final point indicates a need for the research proposed—to further clarify and understand the role of ICIRs in interactions with the health-care system, particularly around how the use of ICIR informs the use of health services.

Conceptual Framework

This study is framed by Andersen and Newman’s (1973) behavioral model of health service utilization (BMHSU) and Carper’s fundamental patterns of knowing (1978). According to Andersen and Newman, HSU is defined as the process of seeking and obtaining health-care services with the intention of maintaining or improving health (Andersen & Newman, 1973; Schepper, van Dongen, Dekker, Deertzen, & Dekker, 2006). The general assumption of the model is that HSU is a function of both individual and societal influences. The model has been used extensively since its inception, for example, in chronic disease research, acute care, and in the evaluation of Internet evaluations (Babitsch, Gohl, & von Lengerke, 2012; Chiu & Eysenbach, 2011; de Boer, Wijker, & de Haes, 1997; McCusker, Karp, Cardin, Durand, & Morin, 2003; Townsend, Gearing, & Polyanskaya, 2012). The most recent iteration of the model (Andersen, 1995) delineates four main areas shaping HSU: (1) the environment, (2) population characteristics, (3) health behavior, and (4) outcomes. The model will be used mainly as a means of explicating sensitizing concepts of interest that will inform in-depth exploration of HSU.

Carper’s Fundamental Patterns of Knowing

This study will be oriented within a holistic nursing perspective guided by the patterns of knowing, first discussed by Barbara Carper (1978). This framework is appropriate to guide the classification of numerous sources from which knowledge is derived in nursing practice (Holtslander, 2008). Specifically, the review of websites will be guided by Carper’s original ways of knowing. Carper’s original work emerged from a qualitative analysis of the concepts, structure, form, and patterns of nursing knowledge (1978). She identified the four patterns a: (1) empirical or scientific, (2) aesthetic or the art of nursing, (3) personal, what is learned through practice, and (4) ethics the moral aspect of nursing; later additions include sociopolitical knowing (White, 1995) and unknowing (Munhall, 1993). Carper accurately depicts the epistemological diversity of nursing knowledge and provides a practical framework to approach the analysis of online cancer information. Acknowledging that human experience and knowledge is shaped by sociopolitical contexts in which they are created, the concept of sociopolitical knowing will be embraced from a holistic perspective across all ways of knowing (Kagan, Smith, Cowling, & Chinn, 2009).

Goals and Objectives

The overarching goal of this mixed methods study is to clarify the ways in which the context and use of ICIRs by individuals newly diagnosed with cancer informs their interactions with the health-care system.

Specific objectives are:

to identify the content of the most commonly used ICIR from a holistic nursing perspective compared to sites most frequently visited by participants,

to explore the prompts to use ICIR and how ICIR informs the ways in which patients utilize and interact with health services and providers, and

to document which ICIRs are accessed and the patterns of usage.

Design and Method

An embedded mixed methods design will address the complexity of the research objectives and generate a comprehensive understanding of the research problem using inductive and deductive methods (Cresswell & Plano Clark, 2011). An embedded design mixes different types of data at the design level, but one type of data is embedded within the methodological approach of the overarching data type. The overarching methodology is interpretive description (ID) and will guide the collection and analysis of qualitative data and address Objectives 1 and 2. The ID will be comprised of two data sources: (1) a review of websites and (2) interviews with 16 individuals newly diagnosed with cancer. The supplemental quantitative component relies upon surveys completed by the 16 participants and provides further description of the research problem, thereby addressing Objective 3. Finally, integrating and triangulating the data from the qualitative and quantitative components will clarify the role of ICIRs in interactions with the health-care system by individuals newly diagnosed with cancer, thereby addressing the overarching goal.

The overall paradigmatic thrust of this study ascribes to a constructivist epistemology (Guba & Lincoln, 1994), as such, the main methodological approach is ID (Thorne, 2008). Thorne describes ID as an appropriate method to generate a better understanding of complex questions that arise from practice-based disciplines, such as nursing, without sacrificing rigor or taking on overwhelmingly large studies with the risk of losing a practice focus. The goal of ID is to go beyond qualitative description in providing a detailed account of a phenomena of interest, to interpret the meaning and understand the relationships and patterns of said phenomena. Thorne encourages researchers to look below the surface of clinical issues via systematic exploration and thorough analysis of these issues particularly through the use of clinical knowledge and multiple data sources, which will generate new knowledge and understanding of the research problem under study.

Setting

Patients will be recruited from an urban university-affiliated cancer treatment center in Saskatchewan. This cancer center provides cancer treatment to the local and Northern populations of the province.

Sample

Cancer websites

Initially, a purposeful sample of websites was deductively selected by searching cancer-related terms on three of the most popular search engines (Google, Yahoo, and Bing; Experian, 2014) and ranking the findings, a method that is increasingly accepted in the study of websites (Kaicker, Debono, Dang, Buckley, & Thabane, 2010). Heretofore, the sample of representative general and cancer-specific websites included for analysis is: Canadian Cancer Society (general, colorectal, and lung), Breast Cancer.org, and Prostate Cancer.ca. Based on feasibility balanced with the need for depth, a sample of approximately 10 pages will be analyzed on each website. Websites mentioned during interviews will be added to the sample.

Participant sample

A purposeful theoretical sample of individuals newly diagnosed with cancer will be approached to take part in this study. A sample of maximum variation will be sought based on emerging variation in participants as well as equal gender representation.

Participants recruited must meet the following inclusion criteria: (1) a histologically confirmed, first diagnosis of cancer (all stages), (2) diagnosis within the last 20 weeks, (3) at least 18 years old, (4) fluent in English, (5) able and willing to take part in interviews and complete questionnaires, (5) have unrestricted access to the Internet, and (6) affirm the use of the Internet for health information. Participants will be excluded if they have been previously diagnosed with cancer.

Although the notion of data saturation is commonly relied upon in qualitative work (Caelli, Ray, & Mill, 2003), Thorne argues it is inappropriate as one cannot know whether new information will arise in subsequent interviews, especially within the context of nonrandom sampling strategies (2008). Instead, she urges researchers to expect a sample size based upon the anticipated number of unique patient profiles or cases, and what is feasible within the constraints of the study. Based on the desired profiles, a sample of at least 16 individuals will be sought, depending on the themes emerging in the concurrent analysis. If there are divergent findings that emerge around specific profiles, additional participants will be sought to explore these themes, should it be feasible and pertinent to the study objectives.

Participant Recruitment Procedures

Recruitment will be completed through three avenues: (1) physician and nurse referral, (2) the new patient intake coordinator, and (3) patient orientation sessions. First, medical oncologists and nurses will be asked to refer newly diagnosed patients fitting the study criteria. Second, all new patients at the cancer center are contacted by the new patient navigator and invited to attend a monthly orientation session. The study will be mentioned to patients during their new patient phone call, and, if interested, their information will be flagged and reported to the research assistant. Information about the study will also be provided at the monthly new patient orientation presentation. Interested participants will be asked to speak with a study representative after the presentation and be provided with further information.

Data Sources

This study has three data sources: (1) cancer websites, (2) qualitative interviews, and (3) quantitative surveys. The data sources and survey tools are described below.

Cancer Websites

Analysis of website data will address Objective 1 to identify the content of the most commonly used ICIRs from a holistic nursing perspective compared to sites most frequently visited by participants. Although a number of tools have been developed to determine quality, accuracy, and readability of websites and focus on rating or ranking quality (Kaicker et al., 2010), the goal of this analysis is to determine the informational context of ICIRs, from a holistic nursing perspective. Criteria from DISCERN (Charnock, 1998; DISCERN project, 2014), a tool designed to help patients and professionals assess the quality of health information online, will be used as a sensitizing framework, but the value proposition of the website data analysis intends to go beyond quantitative metrics. DISCERN presents a framework guided by three main questions: (1) Is the website reliable? (2) What is the quality of information on treatment choices? (3) What is the overall rating or impression of this publication?

Qualitative Interviews

In-depth interviews will be a key source of patient-derived data. The initial interview guide (Appendix A) will address Objective 2 to explore the prompts to use ICIR and how ICIR informs the ways in which patients utilize and interact with health services and providers. The interviews will be semistructured, around a list of trigger questions, to facilitate exploration and description of the areas described above (Thorne et al., 2005). The trigger questions are informed by concepts from the BMHSU and the literature (Andersen, 1995). Examples of questions are tell me about the role of the Internet in your life since you’ve been diagnosed with cancer? What role has the Internet played in your use of health services? Due to the emerging nature of qualitative research, the trigger questions may be modified as interviews evolve, based on issues arising that beg further exploration (Thorne, 2008). All interviews will be digitally audio recorded with participant consent.

Surveys

Surveys with each participant will address Objective 3 to document the ICIR accessed and the patterns and frequency of use. Data on participants’ age, gender, income, education, diagnosis, treatment, and existing medical conditions will be collected through a self-report questionnaire designed for the purpose of this study. Data on specific types of ICIRs used will be collected through a self-report questionnaire thath draws on prior surveys of Internet use of by individuals with cancer (Eysenbach, 2003a; Kelly, Jenkinson, & Ziebland, 2013; van de Poll-Franse & van Eenbergen, 2008), for example, where is the Internet used, is the information discussed with HCPs, and what types of information are used. This survey information adds to the overall understanding of Internet use and creates a more robust picture of the research problem (see Appendix B for full survey).

Data Collection Procedures

Websites

Collection of the initial sample of website data will be completed prior to participant interviews, using a deductive approach. As participants are recruited to the study and discuss additional websites during their interviews, these sites will be added to the review.

Interviews

Participants meeting the eligibility criteria will be asked to identify a convenient time for the interview. Interviews will take place at a mutually agreeable and suitably private location, such as a clinic room at the cancer center or the participant’s home. At the beginning of each interview, participants will be asked to read and sign a consent form to take part in the interview, be reminded that interviews are being audio recorded and that their participation is voluntary. Interviews are expected to last approximately 45 to 60 min. Following completion of the first interview, the second interview will be arranged. Participants will receive a phone call 2 days before the second interview to confirm a suitable time and place.

Surveys

Before the interview is completed, participants will be asked to complete a questionnaire on their background and medical information and utilization of ICIRs.

Data Analysis

All qualitative data analysis will be conducted using Atlas.ti qualitative software, version 7, and will be concurrent with data collection. Thorne recommends that interpretive descriptive data analysis commence with immersion in the data, reading and rereading the data, and then attempting to gain an overall impression of the data by asking “what is happening here?” Subsequently, “synthesizing, theorizing, and recontextualizing” (Thorne, 1997, p. 175) of the data will commence via a step-by-step analytic strategy described below.

Websites

Website pages of interest will be screen capped and saved in Atlas.ti. Initially, these pages will be read with the guiding questions described above. Next, website data will be reviewed for examples of exemplary information tied to the DISCERN criteria and the patterns of knowing, which will be highlighted, documented, and preliminarily coded. Memos will be kept regarding researcher interpretations about codes. Codes will subsequently be grouped according to emerging themes. Themes will then be compared across websites and between the initial sample of website and those reported by participants. These themes will be assessed for their fit within each of the types of knowledge described by the conceptual framework. The goal of the analysis is to understand the content of the most commonly used ICIRs from a holistic nursing perspective; this goal will be revisited throughout the analysis.

Interviews

Interview recordings will be transcribed verbatim and analyzed according to the method of thematic content analysis described by Thorne (1997) and Thorne, Reimer Kirkham, and O’Flynn-Magee (2004). Following the initial reading described above, transcripts will be read with the goal of inductively deriving conceptual themes, first within and subsequently across transcripts. Detailed notes and emerging codes will be kept in Atlas.ti, and emerging codes and notes will be analyzed and grouped according to emerging themes. Next, conceptual themes will be organized into an analytic structure to guide exploration within and between individual cases. Once the analytic structure has been refined through the process of ongoing analysis and comparison, a circling back to the initial questions of “what is happening here?” and “what is the relationship between ICIR use and interaction with the health-care system?” will occur. Using a team approach, the authors will aim to abstract and interpret the meaning of the overall findings in relation to the research objectives through critique, dialogue, and refinement.

All quantitative data analysis will be carried out using Microsoft Excel. Data will be checked for accuracy and completeness to ensure the data attributed to each variable are valid and accurate (Clarke & Cossette, 2000). Descriptive statistics (means, medians, and frequencies) will be used to depict sample characteristics. Patterns of ICIR use will be documented by calculating summary scores of total ICIRs by type and frequency of use.

Integration of Qualitative and Quantitative Data

Integration of the quantitative and qualitative data will occur at two points: (1) Results from the quantitative analysis will be used to interpret participants ICIR use in greater depth and (2) data from interviews, website, and surveys will be triangulated to construct a robust and rich understanding of how ICIR informs service use. Interpretation of quantitative results will not take place in isolation, due to the limited sample size, but will provide essential data about the types and amounts of ICIR participants used (Morse, 2003). Together, these data provide a holistic picture of ICIR use and health-care system interactions.

Evaluation of Rigor

To ensure methodological rigor, Thorne urges researchers to reflect upon principles of epistemological integrity, credibility, analytic logic, and interpretive authority (2008). Principles of epistemological integrity have been respected by using an overarching inductive approach that relies upon responsive and reflexive methods. Representative credibility will be achieved by using multiple data sources and triangulating these sources to account for multiple angles of the research problem. Eschewing the concept of saturation aligns with a constructivist approach, as this acknowledges the impossibility of knowing all there is to know on a possible subject, through the attempts of one study, at one place in time. Analytic logic will be explicated throughout the research process by the use of memos and an audit trail of key decisions, so the research process can be independently evaluated. Interpretive authority aims to establish that the researchers’ interpretations are trustworthy and will be achieved by grounding the findings in the data and the use of supporting exemplary quotes.

Ethical Considerations

Conditional approval was received from the University of Ottawa and University of Saskatchewan Research Ethics Boards. All participants will be asked to read and sign a consent form explaining the study. Participants’ privacy will be preserved by coding their identity on all information collected and storing the data in password-protected electronic files on a password-protected computer, with restricted access to the participant coding key. Use of the interview data in publications will not be specific enough to permit the identification of individual participants (e.g., individual participants will not be identified by age, diagnosis, and treating center). All data (electronic and paper) will be stored for a maximum of 10 years after which time it will be destroyed.

Limitations

The sample for this study is relatively small, is purposefully and theoretically derived, and may therefore be biased. Due to the small sample size and potential bias, the results of the quantitative analysis will be interpreted with particular caution. As well, providers are not included in this study and would provide a more comprehensive picture of how participants use ICIR, but it is not feasible to include them in the present study.

Significance and Implications

This study is important and novel because it seeks to address issues central to understanding how ICIR use informs patients’ interactions with the health-care system—an area where there are significant gaps in understanding. Methodologically, situating the study within a qualitative review of websites presents a novel approach that is timely, given patients’ increasing reliance on the Internet for health information. Moreover, understanding how patients’ use ICIRs will provide insight into the type of information discussed in patient consultations and generate new knowledge about the role ICIR plays in patients’ use of health-care services. Finally, and perhaps most importantly, these findings will provide oncology nurses and interdisciplinary team members with insight into how patients use ICIR to inform their use of health services, which is vital to the planning, tailoring, and delivery of patient-centered care.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research,authorship,and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research,authorship,and/or publication of this article: This work was supported by a grant from the Canadian Association of Nurses in Oncology.

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Internet Cancer Information Use by Newly Diagnosed Individuals and Interactions With the Health System

Abstract

Keywords

Introduction

Study Purpose

Literature Review

Cancer Information Needs and the Health-Care System

E-health and ICIRs in Cancer Care

Role of ICIRs in Interactions With the Health-Care System

Conceptual Framework

Carper’s Fundamental Patterns of Knowing

Goals and Objectives

Design and Method

Setting

Sample

Cancer websites

Participant sample

Participant Recruitment Procedures

Data Sources

Cancer Websites

Qualitative Interviews

Surveys

Data Collection Procedures

Websites

Interviews

Surveys

Data Analysis

Websites

Interviews

Integration of Qualitative and Quantitative Data

Evaluation of Rigor

Ethical Considerations

Limitations

Significance and Implications

Footnotes

Declaration of Conflicting Interests

Funding

References