Transcript
Page 1: Internet ethnography: A review of methodological considerations for studying online illness blogs

D

Inco

Jea Ub Pc M

International Journal of Nursing Studies 51 (2014) 1686–1692

A

Art

Re

Re

Ac

Ke

Qu

Me

Int

Eth

Illn

Blo

*

US

htt

00

iscussion

ternet ethnography: A review of methodologicalnsiderations for studying online illness blogs

ssica Keim-Malpass a,*, Richard H. Steeves b, Christine Kennedy c

niversity of Virginia School of Nursing, Charlottesville, VA, USA

rofessor Emeritus, University of Virginia School of Nursing, Charlottesville, VA, USA

adeline Higginbotham Sly Professor of Nursing, University of Virginia School of Nursing, Charlottesville, VA, USA

What is already known about the topic?

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.

What this paper adds

� 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 iterative

process, negotiation of study involvement as researcher,and early conceptualization of ethical considerationswhen using Internet ethnography.� This paper describes the advantages in using this

method 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).

R T I C L E I N F O

icle history:

ceived 14 December 2013

ceived in revised form 6 June 2014

cepted 11 June 2014

ywords:

alitative

thods

ernet

nography

ess blog

g

A B S T R A C T

Background: In recent history, the Internet has emerged as a wealth of archived, ongoing,

interactive, and socially mediated data. Conducting Internet ethnography is a fairly new

methodological approach, however, it has been previously described as a valid form of

inquiry. Illness blogs, in particular, have great implications for nurse researchers, as they

are able to study the experience of illness in a naturalistic and longitudinal manner, often

with greater detail than data relying solely on participant recall. Participants are able to

produce online illness blogs as a way to share their own illness narratives and connect with

others going through similar processes.

Objectives: The purpose of this paper is to discuss methodological considerations in

studying online illness blogs through Internet ethnography.

Methods: This article provides an overview of Internet ethnography as an emerging

qualitative method and an introduction to research using illness blogs. Through use of this

method in an exemplar study of young women with cancer, key decision points are

highlighted along with the study team’s field experiences.

Conclusion: Issues pertaining to method applicability, active vs. passive involvement as a

researcher, ethical considerations, what constitutes data, sampling approach, procedural

and analytic decisions, and thoughts regarding reflexivity and voice of the research

participants’ are addressed. Strengths and limitations of the study of online illness blogs

through Internet ethnography in nursing science are also discussed.

� 2014 Elsevier Ltd. All rights reserved.

Corresponding author at: P.O. Box 800826, Charlottesville, VA 22908,

A. Tel.: +1 6363466855.

E-mail address: [email protected] (J. Keim-Malpass).

Contents lists available at ScienceDirect

International Journal of Nursing Studies

journal homepage: www.elsevier.com/ijns

p://dx.doi.org/10.1016/j.ijnurstu.2014.06.003

20-7489/� 2014 Elsevier Ltd. All rights reserved.

Page 2: Internet ethnography: A review of methodological considerations for studying online illness blogs

1

macinwvaitsbth2pp(M

dmilcaan(WtmLKrimoSwb2

thfolithesshO

av2hseWnepe

J. Keim-Malpass et al. / International Journal of Nursing Studies 51 (2014) 1686–1692 1687

. Introduction

Over the past two decades, the Internet has become theost comprehensive electronic archive of written material

nd 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, and

irtual 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 people’s lives as theyursue better health and navigate the healthcare system

cWilliam, 2009).Illness blogs, or blogs that were initiated by users to

ocument their experience with a specific disease, haveany purposes and benefits. Blog writers documenting an

lness 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 and

yke, 2012). Illness blogs also grant a voice to patientshrough engagement in digital storytelling and socially

ediated 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 vast

plications for self-disclosure and subsequent supportf potentially stigmatizing health topics (Rains, 2014;aiki and Cloyes, 2014). It is estimated that 12% of adultsith a chronic health condition maintain their own illness

log, 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 understand

ved experiences from digital storytelling and sharing ofe illness narrative. The Internet as a social domain has

xtended 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 and’Riordan, 2002; Eysenbach and Till, 2010).

Internet ethnography is a fairly new methodologicalpproach, 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

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).

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 team’s 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 team’s experiences in the field and strengths andlimitations of the use of this method (Keim-Malpass andSteeves, 2012; Keim-Malpass et al., 2013a,b).

2. Methodological considerations

2.1. Introduction to Internet ethnography

As new forms of Internet ethnography begin to emerge,much of their epistemological underpinnings remain thesame as traditional forms of ethnography. Ethnography

Fig. 1. Key decision points when using online ethnographic methods.

t al., 2013a,b). Unlike in-person interviews, researchers
Page 3: Internet ethnography: A review of methodological considerations for studying online illness blogs

foon

(Ais

anbythyebohoboonsitthspgeneallininwcirprgl

2.2

in

erbeexaceninTrininoninstopin20auagpanotwfledatiothnistinidtoSt

co

J. Keim-Malpass et al. / International Journal of Nursing Studies 51 (2014) 1686–16921688

cuses 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.

. Is the method applicable: population identification,

volvement of researcher, and ethical considerations

Prior to embarking in Internet ethnography, research-s must first determine if the population of interest can

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 understanding

e 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

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 team’s 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).

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 andbecause the study team was not directly interacting withparticipants to ask any specific questions (i.e., we wereusing passive analysis). The ethical implications of onlinedata for social science research are evolving, and of note,IRBs have not yet shown standard methods in grantingapproval Internet-based observational studies. The studyteam then had to make a decision about permissions

Page 4: Internet ethnography: A review of methodological considerations for studying online illness blogs

nSrerdmfoap

imcrfoTwggscPsinwycfonmspcetthnSdt

2

a

dbcvliiloartmhtino

J. Keim-Malpass et al. / International Journal of Nursing Studies 51 (2014) 1686–1692 1689

eeded if the blog included names and an email address.ome bloggers chose to use an alias, or a name notepresenting their real identity, and thus did not havemail addresses present. Their privacy and anonymity wasespected and no contact was made. However, if the blogid include a name and email address, the decision wasade to contact the blog participant to ask for permissionr their blog to be included in our study. Participants with

ccessible emails responded favorably and all grantedermission for inclusion.

Following IRB approval, the lead author becamemersed in the Internet culture of young women with

ancer (diagnosed between the ages of 20 and 39) foroughly six hours per week over a time period ofur months before the actual blog analysis began.

his process began at several key young adult cancerebsites (stupidcancer.com, planetcancer.org, livestron-

.org, youngsurival.org). The lead author followed theeneral content on the website, listened to weekly andpecial content Podcasts hosted by young adults withancer, followed the live chats of survivors during theodcasts, and followed postings on social networking sitesuch as Facebook and Twitter. Twitter searches wereitiated, through ‘following followers’ of authors thatere self-described as diagnosed with cancer during

oung adulthood. ‘Following followers’ is a method ofonnection on Twitter that allowed the user to see whollows certain individuals or young adult cancer orga-

izations. Many of the Twitter users obtained through thisethod were either interested in young adult cancer

urvivor issues or self-identified as young adult canceratients/survivors. This initial time of immersion wasritical in understanding how young adults with cancerxpress themselves, describe issues that are important tohem, communicate among each other, and representhemselves online. The study team was able to understandow the Internet allowed users to construct their socialetwork around their experience (Keim-Malpass andteeves, 2012). This time of immersion was central ineveloping and mapping online communities as a part ofhe ethnographic process (Markham, 2005).

.3. What are data? Procedural considerations, sampling and

nalytic strategy

During the time period of immersion, the nextecision involved determining what type of data woulde included in the analysis. Many of the illness blogsontained narrative text in diary form, access to photos,ideo blogs (videos of themselves created and oftennked to YouTube), hyperlinks to websites, and otherlness blogs the blogger followed, meaning that numer-us items found on the blog could be considered data fornalysis. All of these data elements are important andepresent the digital story the young women wereelling about themselves, however, the decision was

ade by the study team to limit the data forermeneutic analysis to the narrative text found onhe illness blogs (Cohen et al., 2000). Narrative text

cluded actual blog entries, as well as comments postedn each blog entry site.

Sampling considerations were also considered andfurther refined during the antecedent period of immersion.Potential blog sites were initially ascertained for inclusionusing traditional inclusion/exclusion criteria but then hadan additional sampling criteria applied including: threeout of four randomly selected blog entries focusedspecifically on the cancer experience, the blog title orbiography of the blog author highlighted the cancer focus,the blog author indicated cancer type and her age (or agerange) when the cancer was diagnosed as well as currentage (or age range) (Keim-Malpass et al., 2013a,b). Thestudy used a snowball convenience sample to obtain thesample, which began with initial blogs that werehighlighted on a young adult cancer website (stupidcan-cer.org). This purposive strategy was used to initiallysample a small number of the young women who metinclusion criteria, then subsequently include women whowere socially connected (followed each other Twitter) andactively engaged online (regularly commented on blogentries, conversed regularly on Twitter) with the originalsample. Through the online medium, the snowballapproach is achieved through social network mappingand identifying other members who are socially engagedwith the initial participant. Sample ascertainment for theexemplar study is described in detail in previous publica-tions (Keim-Malpass and Steeves, 2012). The final sampleincluded sixteen illness blogs of women diagnosed withcancer who had maintained their blog on average for overtwo years (Keim-Malpass and Steeves, 2012).

Central to the period of immersion, data collection,and analysis was the process of bracketing preconceivedideas and judgments about the research phenomenon ina field notebook, and this ritual was a daily process forthe lead author (Cohen et al., 2000). Additionally,observations of the participants were made throughdata gathered from their blog and public Twitter handle(if applicable). Data from the blog sites were read andabstracted non-concurrently, meaning data originatedfrom the time of diagnosis (or first blog posting related tocancer) and moved forward in time to present day. Thetiming was important to the investigators because wewanted to limit bias among those women who had beenasked for permission to be included in the study by notanalyzing data that was written after permission wasascertained. While reading each blog entry, the leadauthor archived and managed text data and supportingphotographs and videos (for context) in a Word data file.All textual data (including blog entries and field notes)were reviewed multiple times, then analyzed to identifynodes, or individual units of meaning (Cohen et al., 2000).The nodes were then grouped according to categoriesbased on similarities and then eventually into themesthat expressed an overall meaning or interpretation(Cohen et al., 2000). Additionally, memos were main-tained outlining how developed themes applied toprevious findings in the literature and how the themeshighlighted clinical, social and cultural aspects of youngadult cancer survivorship. At this point, consensus wasreached among investigators that saturation in themeshad been achieved and no additional sampling would beneeded.

Page 5: Internet ethnography: A review of methodological considerations for studying online illness blogs

2.4

ofblmidreanboot20sochstuanththnacowofpiAnwthcycoofceillmthtore

hareemcouninthgi(Mtioadetanthpaunnocoemthwhewprbi

J. Keim-Malpass et al. / International Journal of Nursing Studies 51 (2014) 1686–16921690

. Online identity: voice and meaning

From the beginning of the research analysis, the notion online identity of the participants was considered. Aog site is a space in which to create an online identity thatay or may not be consistent with the user’s offlineentity. The users can choose how they wish to bepresented, rather than allowing traditional demographicd socioeconomic factors such as race, gender, class, anddy type to dictate how they are initially perceived byhers, including researchers (Markham, 2005; Mo et al.,09). Computer-mediated construction of self, other, andcial structures are initiated by the user, whether thoseoices are conscious or not (Markham, 2005). In thisdy, text was central to the person’s construction, story,

d negotiation of identity; however the design of the blog,e blog title, pictures associated with the blog, badges one blog, lists of followers, and level of anonymity (realmes/emails versus aliases) all contributed to the socialnstruction of the online identity of the participant. Thereere numerous expressions of identity based on the design

the blogs. One blog was designed in all black with acture of an atomic bomb explosion located on the profile.other was reminiscent of a cabin in the woods. Some

ere scattered with personal photos. The narrative texts ofe young women were equally as diverse, ranging fromnical language, to humor, to curse words, to words ofmfort and contentment. Incorporating the construction

online identity into the ethnographic analysis becamentral in understanding the social and cultural context ofness blogs, and offers a unique strength to thisethodology (Boellstorff et al., 2012). Created identitiesrough an online medium represent an evolving approach

participant observation as a component of ethnographicsearch (Boellstorff et al., 2012).

Social scientist and early Internet ethnographer, Mark-m (2005), suggests that researchers should continuouslyflect on the interests of the research participants. She

phasizes the need to shift from re-representing existingncepts in the literature to focus on advocacy andderstanding how this emerging body of literature can

fluence positive change by asking, ‘‘whose interests doesis research serve and how can my writing and publishingve voice to those who might otherwise remain silent?’’arkham, 2005). Continually reflecting on these ques-ns is central to online ethnographic research design andherence to these principles hopefully achieves anhically grounded and reflexive body of work (Lincolnd Guba, 1985). These concepts offer the reminder thate researchers’ voice is a privileged one and it remainsramount to give a voice to participants rather thanintentionally speaking for them (Fine et al., 2000). Asted previously, the lead author used a field notebook tontinuously write down thoughts, perceptions andotions during the initial months of immersion, during

e time spent transcribing and reading blog narratives, asell as during analysis and dissemination phases. Thislped in bracketing pre-conceived notions about ‘what

as going on’, as well as providing ongoing iterativeocessing, enhancing trustworthiness, and limiting

Additionally, feminist undertones in the textual analysiswere noted as they are necessary to relate the centrality ofgender in the shaping of consciousness (Fine et al., 2000).Gender was a unique aspect to this study because ofpotential disruptions of roles in parenting young childrenthrough a cancer diagnosis and possible loss of fertility,which is often a more pronounced problem for youngwomen cancer survivors (Dow and Kuhn, 2004). Toincorporate this aspect of the study, gender was a centralanalytic lens that was often written about within thecontext of the field notes.

Additionally, an unanticipated finding emerged duringthe process of initial analysis and dissemination. Duringthe original study period, two of the young women diedfrom their cancer diagnosis, yet continued to maintaintheir blog close to the time of their death. Their writingspresented a unique perspective during the end-of-life timeperiod that is often difficult for researchers to gain accessto due to perceived burden to study participants. Sadlyafter initial analysis concluded, three additional youngwomen died due to their disease, each representing widelyvarying end-of-life trajectories. To incorporate this emerg-ing method in a way that enhances access to suchpopulations during vulnerable stages of their diseasetrajectory (i.e., end-of-life), the lead author is currently inthe process of conducting a post hoc analysis to gaininsight from a time period. This lens is critical in givingvoice to young women’s end-of-life experiences.

2.5. Strengths and limitations of method

‘‘The relationships that I formed online were probablythe most true social interactions and relationships Ihave had. I was the most real with them. Perhaps it wasthe anonymity of the Internet that made it safe, perhapsit was the fact that they too had gone throughsomething similar that made me feel connected.Whatever the reason, in my writings, I could open upto them about my thoughts and feelings. I have ‘‘met’’many people whose lives have been touched by cancer.And with each introduction, discussion, comment,email, etc., I feel a commonality that I had not felt inmy everyday life. I greatly appreciate this ridiculousworld of the Internet’’�J., ovarian cancer survivor and blogger diagnosed at

age 26

The use of Internet ethnography as an emergingqualitative methodology has numerous strengths(Table 1). Accounts documented in online illness blogsin this exemplar study were raw and honest and the blogauthors were connected and immersed in each other’scancer experience (Keim-Malpass and Steeves, 2012;Keim-Malpass et al., 2013a,b). Participants in the exemplarstudy were able to discuss many topics openly online thatmay have been difficult to discuss in traditional face-to-face qualitative interviews (i.e., troubling symptoms suchas anal fistulas, relationship difficulty, confrontation ofmortality) (Keim-Malpass and Steeves, 2012; Keim-Malpass et al., 2013a). Illness bloggers have the ability

choose when they want actively engage in emotional

as (Emerson et al., 1995; Lincoln and Guba, 1985). to
Page 6: Internet ethnography: A review of methodological considerations for studying online illness blogs

cscbpbappInp

inulibbagdcthumce

to(Tscodthleilac222bwp

T

S

J. Keim-Malpass et al. / International Journal of Nursing Studies 51 (2014) 1686–1692 1691

atharsis through expressive writing, and engage in socialupport mediated through blog comments and onlineommunication on social media sites (e.g., Twitter, Face-ook, Instagram). Markham (2005) suggests that studyarticipants’ online persona can be fluid and we are able toear witness to a range of emotion. Choosing levels ofnonymity in online environments also gives control in theresentation of self (Markham, 2005). In doing so,articipants also have the ability to disengage withternet activity, lurk on other sites (read without actively

articipating) and/or re-engage when ready.The longitudinal, naturalistic and immersive approach

studying illness blogs through Internet ethnography isnmatched in terms of scope and range in understandingved experiences. This method has very low participanturden, limited recall bias, there are no geographicoundaries limiting connection thereby increasing thebility of the researcher to incorporate diverse views in alobal context. Further, it allows for analysis of longitu-inal illness narratives and mapping of online socialonnectivity and social support derived and maintainedrough the Internet. When approaching this research

sing passive analysis and prolonged ethnographic im-ersion, the experiences and concerns of the participants

an be privileged for an encompassing view of their livedxperience.

Despite this, limitations exist in using online modalities answer socially and clinically relevant questionsable 1). There may be difficulty in obtaining appropriate

ample, findings are often not generalizable, demographicharacteristics of the sample are very difficult to obtain andnline identity cannot be validated. Due to the digitalivide, only those with regular access to the Internetrough computers or mobile phones and a conversantvel of literacy are likely engaging in digital storytelling onlness blogs and online social networking. Two issues thatre case-dependent are ethical issues and concerns overopyrighted data (Bassett and O’Riordan, 2002; Eastham,011; Grimes et al., 2009; Gubrium et al., 2013; Heilferty,011; Lipinski, 2009; Markham and Baym, 2009; Walther,002; Whiteman, 2007). Both of these considerations muste completely explored a priori prior to study initiationith a patient-centered approach and an iterative ongoing

squarely in the center of the research both shifts the ethicalconsiderations and allows for socially responsible re-search’’ (Markham, 2005, p. 815).

3. Conclusions

The use of Internet ethnography in studying onlineillness blogs has numerous implications in the context ofnursing science. The use of this method for our exemplarstudy allowed for a richness in understanding throughiterative data analysis and interpretation. Our studyfocused on the use of digital storytelling to understandthe lived experience following cancer in young women,however, an aspect of this method that can be expandedupon in future work is the study of patient-created Internetmaterial as a modality for health information exchangeand health communication between patients. The combi-nation of Internet-derived research modalities and pa-tient-centered approaches is an exciting area that nursingscience is well-suited to pursue.

References

Agar, M.H., 1986. Speaking of Ethnography. Sage Publications, NewberrryPark, CA.

Bassett, E., O’Riordan, K., 2002. Ethics of Internet research: contesting thehuman subjects research model. Ethics Inf. Technol. 4 (3), 233–247.

Boellstorff, T., Nardi, B., Pearce, C., Taylor, T., 2012. Ethnography andVirtual Worlds. Princeton University Press, Princeton, NJ.

Clifford, J., 1986. Introduction: partial truths. In: Clifford, J., Marcus, G.(Eds.), Writing Culture: The Poetics and Politics of Ethnography.University of California Press, Berkeley, CA, pp. 1–26.

Cohen, M.Z., Kahn, D.L., Steeves, R.H., 2000. Hermeneutic Phenomenolog-ical Research. Sage, Thousand Oaks, CA.

Dow, K.H., Kuhn, D., 2004. Fertility options in young breast cancersurvivors: a review of the literature. Oncol. Nurs. Forum 31 (3),E46–E53.

Eastham, L.A., 2011. Research using blogs for data: public documents orprivate musings? Res. Nurs. Health 34 (4), 353–361.

Emerson, R., Fretz, R., Shaw, L., 1995. Writing Ethnographic Fieldnotes.The University of Chicago Press, Chicago.

Eysenbach, G., Till, J., 2010. Ethical issues in qualitative research onInternet communities. Br. Med. J. 10 (323), 1103–1105.

Fine, M., Weis, L., Weseen, S., Wong, L., 2000. For whom? Qualitativeresearch, representations and social responsibilities. In: Denzin, N.,Lincoln, Y. (Eds.), The Sage Handbook of Qualitative Research. 2nd ed.Sage Publications, Thousand Oaks, CA.

Fox, S., Purcell, K., 2010. Chronic Disease and the Internet. Retrieved

able 1

trengths and limitations of studying online illness blogs.

Strengths Limitations

No geographic boundaries Difficulty in having narrow inclusion/exclusion criteria

Allows researchers to study those who may decline from

participating in traditional qualitative study due to stigma

Unable to confirm identity or validate diagnosis, treatment modalities,

symptom-based experiences

Allows for the ultimate naturalistic inquiry while

studying topics that are of importance to the participant

Digital divide exists – are only those with Internet/mobile access able

to communicate online? Who is not represented online?

No recall bias, participants write about the experience as it

happens

Evolving ethical principles – no true consensus yet among IRBs, unable

to generally provide informed consent when using completely

public websites

Researchers can experience a disease in a longitudinal sense

from diagnosis on while analyzing it non-concurrently

Findings may not be generalizable

Allows for low participant burden and unique perspectives

(e.g., end-of-life experiences)

Unable to ascertain demographic characteristics of sample population

(e.g., race, education level, etc.)

Allows analysis of social support connection through online

social networks

Potential for issues with copyright depending on where the online data

was sourced from

from: http://www.pewinternet.org/�/media/Files/Reports/2010/PIP_Chronic_Disease.pdf (13.10.13).

rocess. As Markham suggests, ‘‘putting the human subject
Page 7: Internet ethnography: A review of methodological considerations for studying online illness blogs

Gr

Gu

He

Hi

Ke

Ke

Ke

La

Lin

Lip

Ma

Ma

Mc

Mi

J. Keim-Malpass et al. / International Journal of Nursing Studies 51 (2014) 1686–16921692

imes, J., Fleischman, K.R., Jaeger, P.T., 2009. Virtual Guinea Pigs: ethicalimplications of human subjects research in virtual worlds. Int. J.Internet Res. Ethics 2 (1), 1–19.

brium, A., Hill, A., Flicker, S., 2013. A situated practice of ethics forparticipatory visual and digital methods in public health research andpractice: a focus on digital storytelling. Am. J. Public Health (August) .

ilferty, C.M., 2011. Ethical considerations in the study of online illnessnarratives: a qualitative review. J. Adv. Nurs. 67 (5), 945–953.

ne, C., 2009. How can qualitative Internet research define the bound-aries of the project? In: Markham, A., Baym, N. (Eds.), InternetInquiry, Sage Publications, Los Angeles.

im-Malpass, J., Albrecht, T.A., Steeves, R.H., Danhauer, S.C., 2013a.Young women’s experiences with complementary therapies duringcancer described through illness blogs. West. J. Nurs. Res. 35 (10),1309–1324.

im-Malpass, J., Baernholdt, M., Erickson, J.M., Ropka, M.E., Schroen, A.T.,Steeves, R.H., 2013b. Blogging through cancer: young women’s per-sistent problems shared online. Cancer Nurs. 36 (2), 163–172.

im-Malpass, J., Steeves, R.H., 2012. Talking with death at a diner: youngwomen’s online narratives of cancer. Oncol. Nurs. Forum 39 (4), 373–378, http://dx.doi.org/10.1188/12.ONF.373-378, 406.

gu, T., Kaufman, E.J., Asch, D.A., Armstrong, K., 2008. Content ofweblogs written by health professionals. J. Gen. Intern. Med. 23(10), 1642–1646.

coln, Y., Guba, E., 1985. Naturalistic Inquiry. Sage Publications, BeverlyHills, CA.

inski, T.A., 2009. Emerging legal issues in the collection and dissemi-nation of Internet-sourced research data: part II, tort law issuesinvolving defamation. Int. J. Internet Res. Ethics 2 (1), 1–16.

rkham, A., 2005. The methods politics and ethics of representation inonline ethnography, 3rd ed. In: Denzin, N., Lincoln, Y. (Eds.), The SageHandbook of Qualitative Research, 3rd ed., Sage Publications, Thou-sand Oaks, CA.

rkham, A., Baym, N., 2009. Internet Inquiry. Sage Publications, LosAngeles.

William, C., 2009. Patients, persons, or partners? Involving those withchronic disease in their care. Chronic Illn. 5, 277–292.

ller, D., Slater, D., 2000. The Internet: An Ethnographic Approach. BergPublishing, New York, NY.

Mo, P.K.H., Malik, S.H., Coulson, N.S., 2009. Gender differences incomputer-mediated communication: a systematic literature re-view of online health-related support groups. Patient Educ. Couns.75 (1), 16–24.

Murthy, D., 2008. Digital ethnography: an examination of the use of twotechnologies for social research. Sociology 42 (5), 837–855.

Pennebaker, J., Seagal, J., 1999. Forming a story: the health benefits ofnarrative. J. Clin. Psychol. 55, 1243–1254.

Rains, S., 2014. The implications of stigma and anonymity for self-disclo-sure in health blogs. Health Commun. 29 (1), 23–31.

Ressler, P., Bradshaw, Y., Gualtieri, L., Ho Chui, K., 2012. Communicatingthe experience of chronic pain and illness through blogging. J. Med.Internet Res. 14 (5), e143.

Saiki, L., Cloyes, K., 2014. Blog text about female incontinence: presen-tation of self, disclosure, and social risk assessment. Nurs. Res. 63 (2),137–142.

Schotanus-Dijkstra, M., Havinga, P., van Ballegooijen, W., Delfosse, L.,Mokkenstorm, J., Boon, B., 2013. What do the bereaved by suicidecommunicate in online support groups? Crisis 1–9.

Seale, C., Charteris-Black, J., Macfarlane, A., Mcpherson, A., 2010. Inter-views and Internet forums: a comparison of two sources of qualitativedata. Qual. Health Res. 20 (5), 595–606.

Stanton, A.L., Thompson, E.H., Crespi, C.M., Link, J.S., Waisman, J.R., 2013.Project connect online: randomized trial of an Internet-based pro-gram to chronicle the cancer experience and facilitate communica-tion. J. Clin. Oncol. 31 (27), 3411–3417.

Thielst, C.B., 2007. Weblogs: a communication tool. J. Healthc. Manag. 52(5), 287–289.

Treadgold, C.L., Kuperberg, A., 2010. Been there, done that wrote the blog:the choices and challenges of supporting adolescents and youngadults with cancer. J. Clin. Oncol. 28 (32), 4842–4849.

Walther, J.B., 2002. Research ethics in Internet-enabled research: humansubjects issues and methodological myopia. Ethics Inf. Technol. 4,205–216.

Whiteman, E., 2007. ‘‘Just Chatting’’: research ethics and cyberspace. Int. J.Qual. Methods 6 (2), 1–9.

Ziebland, S., Wyke, S., 2012. Health and illness in a connected world: howmight sharing experiences on the Internet affect people’s health?Milbank Q. 90 (2), 219–249.


Top Related