Internet ethnography: A review of methodological considerations for studying online illness blogs

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<ul><li><p>D</p><p>Inco</p><p>JeaUbPcM</p><p>International Journal of Nursing Studies 51 (2014) 16861692</p><p>A </p><p>Art</p><p>Re</p><p>Re</p><p>Ac</p><p>Ke</p><p>Qu</p><p>Me</p><p>Int</p><p>Eth</p><p>Illn</p><p>Blo</p><p>*</p><p>US</p><p>htt</p><p>00iscussion</p><p>ternet ethnography: A review of methodologicalnsiderations for studying online illness blogs</p><p>ssica Keim-Malpass a,*, Richard H. Steeves b, Christine Kennedy c</p><p>niversity of Virginia School of Nursing, Charlottesville, VA, USA</p><p>rofessor Emeritus, University of Virginia School of Nursing, Charlottesville, VA, USA</p><p>adeline Higginbotham Sly Professor of Nursing, University of Virginia School of Nursing, Charlottesville, VA, USA</p><p>What is already known about the topic?</p><p>Conducting Internet ethnography is a fairly newmethodological approach, however, it has been previ-ously described as a valid form of naturalistic inquiry.Illness data captured on the Internet data privilegesthe current experiences of patients and contain detailedaccounts of disease processes and psychosocialramifications.</p><p>What this paper adds</p><p> This paper explores methodological considerations ofInternet ethnography in the context of nursing scienceusing decision points from an exemplar study. This paper examines the need for fluidity, an iterativeprocess, negotiation of study involvement as researcher,and early conceptualization of ethical considerationswhen using Internet ethnography. This paper describes the advantages in using thismethod to offer utility in studying experiences amongpopulations that are traditionally difficult to study(e.g., end-of-life experiences, groups with stigmaassociated with their disease).</p><p>R T I C L E I N F O</p><p>icle history:</p><p>ceived 14 December 2013</p><p>ceived in revised form 6 June 2014</p><p>cepted 11 June 2014</p><p>ywords:</p><p>alitative</p><p>thods</p><p>ernet</p><p>nography</p><p>ess blog</p><p>g</p><p>A B S T R A C T</p><p>Background: In recent history, the Internet has emerged as a wealth of archived, ongoing,</p><p>interactive, and socially mediated data. Conducting Internet ethnography is a fairly new</p><p>methodological approach, however, it has been previously described as a valid form of</p><p>inquiry. Illness blogs, in particular, have great implications for nurse researchers, as they</p><p>are able to study the experience of illness in a naturalistic and longitudinal manner, often</p><p>with greater detail than data relying solely on participant recall. Participants are able to</p><p>produce online illness blogs as a way to share their own illness narratives and connect with</p><p>others going through similar processes.</p><p>Objectives: The purpose of this paper is to discuss methodological considerations in</p><p>studying online illness blogs through Internet ethnography.</p><p>Methods: This article provides an overview of Internet ethnography as an emerging</p><p>qualitative method and an introduction to research using illness blogs. Through use of this</p><p>method in an exemplar study of young women with cancer, key decision points are</p><p>highlighted along with the study teams field experiences.</p><p>Conclusion: Issues pertaining to method applicability, active vs. passive involvement as a</p><p>researcher, ethical considerations, what constitutes data, sampling approach, procedural</p><p>and analytic decisions, and thoughts regarding reflexivity and voice of the research</p><p>participants are addressed. Strengths and limitations of the study of online illness blogs</p><p>through Internet ethnography in nursing science are also discussed.</p><p> 2014 Elsevier Ltd. All rights reserved.</p><p> Corresponding author at: P.O. Box 800826, Charlottesville, VA 22908,</p><p>A. Tel.: +1 6363466855.</p><p>E-mail address: (J. Keim-Malpass).</p><p>Contents lists available at ScienceDirect</p><p>International Journal of Nursing Studies</p><p>journal homepage:</p><p>p:// 2014 Elsevier Ltd. All rights reserved.</p><p>;domain=pdf;domain=pdf</p></li><li><p>1</p><p>macinwvaitsbth2pp(M</p><p>dmilcaan(WtmLKrimoSwb2</p><p>thfolithesshO</p><p>av2hseWnepe</p><p>J. Keim-Malpass et al. / International Journal of Nursing Studies 51 (2014) 16861692 1687. Introduction</p><p>Over the past two decades, the Internet has become theost comprehensive electronic archive of written materialnd has significantly changed the way people communi-ate, access information, and live their lives. The dailyflux of new information available online represents aide range of current events, viewpoints, opinions, andirtual communities that allow ordinary citizens to have anctive voice with an accessible medium in which to express. Internet support groups, resources, social networkingites such as Twitter, Facebook, and Instagram, and illnesslogs have recently emerged as popular media for patients,eir caregivers and health care professionals (Thielst,007; Ziebland and Wyke, 2012). Online health resourceslay a supporting role in many peoples lives as theyursue better health and navigate the healthcare systemcWilliam, 2009).Illness blogs, or blogs that were initiated by users to</p><p>ocument their experience with a specific disease, haveany purposes and benefits. Blog writers documenting anlness are able to update family and friends through theourse of treatment and recovery, become an advocate fornd educate others going through the same experience,sk questions and get answers from their online commu-ity, and gain the emotional benefits of expressive writingPennebaker and Seagal, 1999; Thielst, 2007; Ziebland andyke, 2012). Illness blogs also grant a voice to patients</p><p>hrough engagement in digital storytelling and sociallyediated connection with others (Gubrium et al., 2013;agu et al., 2008; Ressler et al., 2012; Treadgold anduperberg, 2010). Additionally, because users mayemain anonymous if they choose, there are vastplications for self-disclosure and subsequent support</p><p>f potentially stigmatizing health topics (Rains, 2014;aiki and Cloyes, 2014). It is estimated that 12% of adultsith a chronic health condition maintain their own illnesslog, and 28% read peers illness blogs (Fox and Purcell,010).While blogs are beneficial for the patients who writeem (Stanton et al., 2013), they also offer a new modalityr health care providers and researchers to understandved experiences from digital storytelling and sharing ofe illness narrative. The Internet as a social domain hasxtended the reach of human subjects research for socialcientists and textual data found on these venues are a richource for researchers interested in understanding theermeneutics of patients lived experiences (Bassett andRiordan, 2002; Eysenbach and Till, 2010).Internet ethnography is a fairly new methodological</p><p>pproach, however, it has been previously described as aalid form of naturalistic inquiry (Markham and Baym,009; Miller and Slater, 2000). Previous work in this areaas demonstrated that virtual technologies are besttudied through a flexible and narrative approach thatthnography lends itself to (Markham and Baym, 2009).hen compared to interview qualitative data, it has beenoted that Internet data privileges the current experi-nces of patients and contain detailed accounts of diseaserocesses and psychosocial ramifications (Keim-Malpass</p><p>do not have to rely on the participants recall (Seale et al.,2010). Because of the ease with which large amounts ofarchived materials can be accessed and analyzed, thissource of data has considerable potential for directobservation of illness experiences (Seale et al., 2010).</p><p>This paper will discuss methodological considerationsof Internet ethnography for use in nursing science byexamining elements of an exemplar study involvingInternet illness blogs of young women with cancer.Findings from this study have been previously reported(Keim-Malpass and Steeves, 2012; Keim-Malpass et al.,2013a,b) and methodological elements requiring decisionwere based on the study teams experience and docu-mented in field notes throughout the process. To theauthors knowledge, this research was the first to useInternet illness blogs for hermeneutic interpretationimmersed in an ethnographic context. In order to advanceuse of this unique and innovative methodology, keydecision points are highlighted (Fig. 1), along with thestudy teams experiences in the field and strengths andlimitations of the use of this method (Keim-Malpass andSteeves, 2012; Keim-Malpass et al., 2013a,b).</p><p>2. Methodological considerations</p><p>2.1. Introduction to Internet ethnography</p><p>As new forms of Internet ethnography begin to emerge,much of their epistemological underpinnings remain thesame as traditional forms of ethnography. EthnographyFig. 1. Key decision points when using online ethnographic methods.t al., 2013a,b). Unlike in-person interviews, researchers</p></li><li><p>foon</p><p>(Ais anbythyebohoboonsitthspgeneallininwcirprgl</p><p>2.2</p><p>in</p><p>erbeexaceninTrininoninstopin20auagpanotwfledatiothnistinidtoSt</p><p>co</p><p>J. Keim-Malpass et al. / International Journal of Nursing Studies 51 (2014) 168616921688cuses on understanding social stories and what is going in the field, and this remains true both on and offlinegar, 1986; Murthy, 2008). Traditionally, an ethnographerthought of as embarking in field work in a communityd seeking to understand the culture that she encounters making sense of social actions from the point of view ofe participants (Clifford, 1986). Within the past fifteenars, the Internet has changed the way qualitative data isth conceptualized and collected while also impactingw ethnographies can take place. Without a physicalundary defining place, ethnographers doing researchline must still immerse themselves in the socialuation being studied to learn the socially relevantings that are happening there (Hine, 2009). Logisticallyeaking, the notion that the Internet can erase allographic boundaries and allow ethnographers to con-ct with people instantaneously has many advantages. Itows for increased access to various perspectives,cluding those of people who may not have participated traditional face-to-face research interviews, or thoseho may be stigmatized due to their disease orcumstances (Schotanus-Dijkstra et al., 2013). It alsoovides a method by which international sampling andobal perspectives can be easily accessed.</p><p>. Is the method applicable: population identification,</p><p>volvement of researcher, and ethical considerations</p><p>Prior to embarking in Internet ethnography, research-s must first determine if the population of interest can</p><p> self-defined and ensure that the online communityists. In other words, is the population of interest readilycessible (through self-identification) in the onlinevironment and do the members of this communityteract with one another (Markham and Baym, 2009)?aditional clinical research relies on having very strictclusion and exclusion criteria, and admittedly, theclusion/exclusion criteria may need to be modified forline ethnographic work. In the exemplar study involv-g women diagnosed with cancer from ages 20 to 39, theudy team had to accept an age range of diagnosis asposed to having very strict clinical knowledge regard-g precise dates of diagnosis (Keim-Malpass and Steeves,12). From spending many months in the field, the leadthor ascertained that women often did describe theire at diagnosis, but sometimes did not specify articular age, instead using an age-range when diag-sed (i.e., diagnosed with ovarian cancer in my lateenties). Therefore, the inclusion criteria necessitatedxibility by virtue of not having access to specific clinicalta elements (Keim-Malpass and Steeves, 2012). Addi-nally, the lead author spent initial time understandinge context in which young adults with cancer commu-cate with one another in the online environment. Thisep was critical in determining that the population ofterest had an active presence online, could be self-entified, and regularly used social media and their blogs communicate with one another (Keim-Malpass andeeves, 2012).The next step for ethnographers in virtual fields is tonsider how active to be in relation to the participants</p><p>they are studying (Hine, 2009). Three different types ofInternet-based research methodologies have been de-scribed: (1) passive analysis that involves understandinghow information and dialogs are exchanged on discussiongroups or blog sites without the researchers actuallyinvolving themselves, (2) active analysis in which theresearcher actively is involved in participation and dialogexchange, and (3) self-identified active analysis whereresearchers identify themselves and their research inter-ests a priori which may allow them to also gatherinformation in a more in-depth interview or focus groupsetting or use the Internet to recruit participants for clinic-based studies (Markham and Baym, 2009). The differencein levels of active participation by the investigator hasvarious methodological and ethical implications. In theexemplar study, the decision was made to be passiveinvestigators and analyze illness blogs that were already inexistence and located on public Internet sites (Keim-Malpass and Steeves, 2012; Keim-Malpass et al., 2013a).This decision was based on the study teams interest in anaturalistic inquiry to further understand the livedexperience of young women with cancer without anypreconceived interview questions to direct responses. Thisapproach follows the key assumption that ethnographicmethodology should use the entire experience of immer-sion to learn how life is lived, rather than coming in withparticular a priori assumptions of the issues that areimportant to the group being studied (Hine, 2009). Thisform of inquiry was also critical in understanding theexperience of cancer from a longitudinal perspectivebecause we were able to follow the young women non-concurrently, meaning that analysis began at the time ofdiagnosis and moved forward in time to the most recentblog posting. This method allowed us to follow as much ofthe disease process as possible (up to 4 years for somewomen), from the time participants were diagnosedthrough treatment, and transitioning into survivorshipor death, noting experiences with recurrence and remis-sion, and other setbacks and milestones along the way(Keim-Malpass et al., 2013b).</p><p>After deciding on whether to conduct passive or activeInternet ethnography, Institutional Review Board (IRB)approval is the necessary next step. The study team wascareful to consider the ethical implications and ramifica-tions of conducting an Internet ethnography usingpublically available Internet data prior to initiation ofthe study. These considerations tend to focus on thechallenges of privacy, confidentiality and informed con-sent and are very dependent on where the data is beingobtained, the level of privacy the author of the contentassumes, and how active the researcher is in relation to theparticipants (Eastham, 2011; Heilferty, 2011). The exem-plar study was submitted to the IRB and need for approvalwas exempted due to the public nature of the blog sites andbecau...</p></li></ul>