(Samen) Online Ziek; Een exploratief onderzoek naar de manier waarop het geconfronteerd worden met reumatische aandoeningen betekenis krijgt, gerelateerd aan sociale-media-ervaringen

Tom Van Ransbeeck
Een diepgaande analyse van de processen die ertoe leiden dat mensen door online participatie in staat worden gesteld om hun eigen reumatische aandoening succesvol een plaats te geven in hun leven.

Dr. Google voorbij: samen ziek zijn online, een helend proces

Het internet wordt vaak gezien als de plaats bij uitstek waar mensen zich overgeven aan hypochondrie. Dr. Google heeft de reputatie mensen vooral paranoïde te maken. Ook worden mensen er zelf al te vaak van verdacht, wanneer ze ziek zijn, de ernst van hun symptomen te overdrijven of overschatten, waardoor ze al snel tot desastreuze prognoses komen. Ook in wetenschappelijke kringen wordt gebruik van het internet om een diagnose en oplossingen voor gezondheidsproblemen te zoeken, veelal als een gevaarlijke praktijk beschouwd. Het internet, en het sociale contact met lotgenoten dat het mogelijk maakt, kan echter ook steun bieden in moeilijke tijden, zo blijkt uit een masterproefonderzoek van Tom Van Ransbeeck aan de UGent. Hij bestudeerde in het kader van zijn opleiding Gezondheidsvoorlichting en –bevordering een Facebookgroep rond reumaklachten en kwam tot enkele opvallende conclusies.

Tegenwoordig krijgen steeds meer mensen te kampen met chronische ziekten. Van Ransbeeck beschrijft hoe deze mensen hun toevlucht zoeken tot sociale media, en waarom precies. Hij beschrijft hoe target-oriented care, de benaming voor hoe zieke mensen en medisch personeel samen kijken wat nog haalbaar is met de ziekte en hoe zij dit nog kunnen verwezenlijken, langzaamaan het nieuwe credo wordt in de gezondheidszorg. Vroeger was immers eerder sprake van problem-oriented care: proberen wegwerken van het fysiek-medische probleem, en als dat niet kon, tja, dat was het dan voor de zieke persoon. Natuurlijk leerde deze laatste op die manier niet hoe hij of zij het beste zijn/haar leven aan de ziekte kon aanpassen, waardoor zijn/haar levenskwaliteit er niet op vooruitging.

Ook beschrijft Van Ransbeeck de invloed van het Web 2.0, dat gebruikers niet alleen toelaat om makkelijk informatie te verzamelen, maar ook om informatie uit te wisselen met andere gebruikers, bijvoorbeeld door middel van sociale netwerksites zoals Facebook. Van Ransbeeck volgde gedurende 6 maanden het reilen en zeilen in een Facebookgroep rond reumaklachten. Hij las en postte berichten en ging in dialoog met gebruikers via de groepsfeed, privéberichten en face-to-face interviews. Hij beschrijft gedetailleerd hoe het groepsgebeuren meer wordt dan zomaar klagen of informatie vergaren. Zo ontstaat in de bijna 3000 leden sterke groep een groepscultuur, waar mensen een gevoel van thuiskomen ervaren, waar zij hun verhaal kwijt kunnen, bij elkaar steun vinden en van elkaar leren. Het gevoel van samen ziek te zijn stelt hen in staat de ziekte een plaats te geven in een veilige omgeving en zichzelf terug te vinden, nadat zij zich verloren voelden door de confrontatie met ziekte.  

Het onderzoek beschrijft de dagelijkse strijd van het leven met chronische ziekte in de woorden van zij die het beleven. Het toont aan dat leven met een chronische ziekte meer is dan omgaan met fysieke belemmeringen en symptomen: het is ook een zoektocht om het leven opnieuw betekenisvol in te vullen en zichzelf terug te vinden. Mensen leven niet alléén: chronisch zieke mensen voelen zich gewrongen in een netelige positie. Ze mogen immers niet “te gezond” lijken op goede dagen, maar “mogen zich ook niet laten gaan” en doen zich sterk voor op slechte. Zo proberen ze aan de verwachtingen van hun omgeving te voldoen. Een beschuldigende vinger hangt immers voortdurend als een zwaard van Damocles in de lucht en zorgt ervoor dat mensen zich alleen voelen, in een rol van zieke gedramd. Ze mogen niet genieten van een goede dag of uitblazen op een slechte. De zieke persoon voelt zich zo verantwoordelijk voor de reacties van anderen op een moment dat hij/zij zelf ook nog volop zoekt hoe hij/zij het leven met een ziekte, waarover hij/zij niet altijd controle heeft, kan invullen. 

De social affordances van Facebook, de wetenschappelijke benaming voor hoe Facebook interactie vergemakkelijkt door de mogelijkheden die het biedt, maken het eenvoudiger om tot de groep toe te treden en te posten: “ne keer een likeske geven” kan met één klik. Zelfs deze kleine vorm van appreciatie en erkenning zorgt er al voor dat de leden de groep blijven gebruiken. De laagdrempeligheid van interactie legt, samen met de herkenning van de moeilijkheden van andere leden als eigen moeilijkheden, de fundering voor een sterk groepsgevoel. De online groep wordt meer dan enkel een plaats voor informatie, meer dan een dokter Google. Ze wordt een plaats waar men zich begrepen voelt, waar men in een veilige omgeving de goede dagen kan vieren, zonder scheef te worden bekeken als “valse zieke”, en kan klagen op slechte dagen, zonder te worden gezien als iemand die zich laat gaan.

In de Facebookgroep komen mensen in contact met elkaars verhaal en vinden hierin uitdagingen terug waarvoor zijzelf ook staan. Ieder tracht op zijn/haar manier om te gaan met symptomen en bijwerkingen van medicatie, het onzeker verloop van de ziekte, de reacties van de omgeving en de manier waarop de ziekte een invloed heeft op hun werksituatie. Samen begrijpen zij gevoelens en moeilijkheden die voor een buitenstaander minder duidelijk zijn. Dit vormt de basis voor een sterk wij-gevoel en de ontwikkeling van een eigen cultuur, die onder andere zichtbaar is in hoe mensen via memes op een humoristische wijze de uitdagingen van hun ziekte uitbeelden. Zo wordt een beeld uit de Star Wars-trilogie waarin Darth Sidious zich ontfermt over een zwaargewonde Anakin Skywalker, een humoristische aanklacht tegen de manier waarop chronisch zieken het gevoel hebben dat zij in de maatschappij moeten meedraaien om nog waardevol te zijn als mens.

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Dit laat hen toe om te gaan met gevoelens van onzekerheid en frustratie met betrekking tot hun ‘zieke zelf’.  Samen ziek zijn wordt zo ook samen lachen, samen relativeren en samen terug leren leven in plaats van door ziekte geleefd te worden. De thesis vormt een belangrijk startpunt voor een toenemende waardering voor de mogelijkheden die het internet biedt voor het welzijn van mensen die te kampen krijgen met chronische ziekte te vergroten. Wordt ongetwijfeld vervolgd...

Bibliografie

 ADDIN EN.REFLIST Adler, B. (2009). Psychology and Sociology Applied to Medicine. Edinburgh: Elsevier.

Aggleton, P. (1990). Health. Londen: Routledge.

Albrecht, G. L., Fitzpatrick, R., & Scrimshaw, S. C. (2003). The handbook of social studies in health and medicine. Londen/Thousand Oaks/New Delhi: Sage.

Alexander, J. C. (2003). The Meanings of Social Life: A Cultural Sociology. New York: Oxford University Press.

Alexanderson, K. (1998a). Measuring health. Indicators for working women. In A. M. Kilborn, K. & C. Bild-Thorbjörnsson (Eds.), Women's health at work (pp. 121-161). Stockholm: National Institute for Working Life.

Alexanderson, K. (1998b). Sickness absence: a review of performed studies with focus on levels of exposure and theories utilized. Scandinavian Journal for Social Medicine, 26, 241-249.

Altheide, D. L., & Johnson, J. M. (1994). Criteria for assessing interpretive validity in qualitative research. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research (pp. 485-499). Thousand Oaks (CA): Sage.

Altschuler, J. (1997). Working with chronic illness: a family approach. Londen: Palgrave Macmillan.

Anderson, R., & Bury, M. (1988). Living with chronic illness: the experience of patients and their families. Londen: Unwin Hyman.

Aran, O., Biel, J.-I., & Gatica-Perez, D. (2014). Broadcasting oneself: visual discovery of vlogging styles. IEEE Transactions on multimedia, 16(1), 201-215.

Arnold, M. (2007). The concept of community and the character of networks. The journal of community informatics, 3(2), http://www.ci-journal.net/index.php/ciei/article/view/327/315.

Ashworth, P. D. (1995). The meaning of "participation" in participant observation. Qualitative health research, 5(3), 366-387.

Association of Internet Researchers, A. (2016). Ethics.   Retrieved from http://aoir.org/ethics/

Atkinson, P. (1997). Narrative turn or blind alley? Qualitative health research, 7(3), 325-344.

Atkinson, P., Coffey, A., Delamont, S., Lofland, J., & Lofland, L. (2001). Handbook of ethnography. Londen: Sage.

Bakardjieva, M. (2003). Virtual togetherness: an everyday-life perspective. Media, Culture & Society, 25(3), 291-313.

Bakardjieva, M. (2005). Internet society: The Internet in everyday life. Londen: Sage.

Bakardjieva, M. (2009). Subactivism: Lifeworld and Politics in the Age of the Internet. The Information Society, 25(2), 91-104.

Bambina, A. (2007). Online social support: the interplay of social networks and computer-mediated communication. Armherst (NY): Cambria press.

Bar-Lev, S. (2008). "We are here to give you emotional support": performing emotions in an online HIV/AIDS support group. Qualitative health research, 18, 509-521.

Barak, A., Boniel-Nissim, M., & Suler, J. (2008). Fostering empowerment in online support groups. Computers in Human Behavior, 24, 1867-1883.

Bauman, Z. (1995). Life in fragments: essays in postmodern morality. Oxford: Blackwell.

Baym, N. K. (1995). The emergence of community in computer-mediated communication.

Baym, N. K. (1998). The emergence of on-line community. In S. G. Jones (Ed.), Cybersociety 2.0. Revisiting computer-mediated communication and community. Londen/Thousand Oaks/New Delhi: Sage Publications.

Baym, N. K. (2006). Finding the quality in qualitative internet research. In D. Silver & A. Massanari (Eds.), Critical Cyberculture Studies. New York/Londen: New York University Press.

Becker, H. (1963). Labeling theory. In P. A. Adler & P. Adler (Eds.), Constructions of Deviance: Social Power, Context, and Interaction. Belmont (CA): Wadsworth Publishing Co.,.

Becker, H. (1998). Tricks of the trade: how to think about your research while you're doing it. Chicago (IL): University of Chicago Press.

Becker, H. (2008). Outsiders: studies in the sociology of deviance. New York (NY): Simon and Schuster.

Bell, S. E. (1999). Narratives and lives: Women's health politics and the diagnosis of cancer for DES daughters. Narrative Inquiry, 9(2), 347-389.

Bendelow, G. A., & Williams, S. J. (1995). Transcending the dualisms: towards a sociology of pain. Sociology of health & illness, 17(2), 139-165.

Biel, J.-I., & Gatica-Perez, D. (2010). Voices of vlogging. Paper presented at the The Fourth International AAAI Conference on Weblogs and Social Media, Washington, DC (MD).

Bijlsma, J. W. J., & Huber-Bruning, O. (1985). Reumatische klachten: aard, onderzoek en behandeling. Weert: M & P Medisch.

Bird, C. E., Conrad, P. C., Fremont, A. M., & Timmermans, S. (2010). The Handbook of Medical Sociology (6 ed.). Nashville, TN: Vanderbilt University Press.

Blanchard, A., & Markus, M. L. (2004). The experienced 'sense' of a virtual community: characteristics and processes. The DATA BASE for advances in information systems, 35(1), 65-79.

Blaxter, M. (1975). Disability and rehabilitation: some questions of definition. In C. Cox & A. Mead (Eds.), A Sociology of Medical Practice (pp. 207-223). Londen: Collier MacMillan.

Blaxter, M. (1995). What is health? In B. Davey, A. Gray, & C. Seale (Eds.), Health and Disease. Buckingham: The Open University Press.

Blumer, H. (1954). What is wrong with social theory? American Sociological Review, 18, 3-10.

Blumer, H. (1969). Symbolic Interactionism: Perspective and Method. Berkeley/L.A./Londen: University of California Press.

Boellstorff, T., Nardi, B., & Pearce, C. (2012). Ethnography and virtual worlds: A handbook of method. Princeton (NJ): Princeton University Press.

Boorse, C. (1977). Health as a theoretical concept. Philosophy of Science, 44, 542-573.

Bos, N., Karahalios, K., Musgrove-Chávez, M., Poole, E. S., Thomas, J. C., & Yardi, S. (2009). Research ethics in the facebook era: privacy, anonymity, and oversight. Paper presented at the CHI'09 extended abstracts on Human factors in computing systems, Boston.

Bowen, G. A. (2006). Grounded Theory and Sensitizing Concepts. International journal of qualitative methods, 5(3), 1-9.

Boyd, D. (2007). Why youth (heart) social network sites: The role of networked publics in teenage social life (Vol. Youth, identity, and digital media volume). Cambridge (MA): MIT Press.

Boyd, D. (2014). It's complicated: the social lives of networked teens. New Haven (CT)/Londen: Yale University Press.

Boyer, C. P., M., & Baujard, M. (2002). Highlights of the 8th HON survey of health and medical internet users.   Retrieved from http://www.hon.ch/Survey/8th_HON_results.html

Bradner, E. (2001). Social affordances of computer-mediated communication technology: understanding adoption. Paper presented at the CHI'01 Extended Abstracts on Human Factors in Computing Systems, Seattle (WA).

Brayton, A. D. (2007). Exploring the reconception of the self subsequent to affective disorder diagnosis: towards an understanding of identity reconstruction. (doctoraat), Chicago School of Professional Psychology, Ann Arbor (MI).  

Bridgman, A. (2015). 8 meme origins that change everything.   Retrieved from http://www.collegehumor.com/post/7015609/8-legitimately-great-things-ru…

Brignall, T., & Van Valeys, T. (2008). Online gaming communities and the neo tribalism movement. Theory and Science, 10(1).

Brubaker, J. R. (2008). wants moar: Visual Media's Use of Text in LOLcats and Silent Film. gnovis journal, 8(2), 117-124.

Bruns, A. (2007). Produsage: towards a broader framework for user-led content creation. Paper presented at the Creativity and Cognition: proceedings of the 6th ACM SIGCHI conference on creativity & cognition, ACM, Washington, DC (MD).

Bruns, A. (2008). Blogs, Wikipedia, Second Life, and Beyond. From Production to Produsage. Bern: Peter Lang.

Bryant, A. (2003). A Constructive/ist Response to Glaser's" Constructivist Grounded Theory". Forum Qualitative Social Research, 4(1), 106-113.

Bulmer, M. (1979). Concepts in the analysis of qualitative data. The Sociological Review, 27, 651-677.

Bury, M. (1979). Disablement in society: Towards an integrated perspective. International Journal of Rehabilitation Research, 2(1), 33-40.

Bury, M. (1982). Chronic Illness as Biographical Disruption. Sociology of health & illness, 4, 167-182.

Bury, M. (1986). Social Constructionism and the Development of Medical Sociology. Sociology of health & illness, 8, 137-169.

Bury, M. (1988). Meanings At Risk: The Experience of Arthritis. In R. Anderson & M. Bury (Eds.), Living with Chronic Illness: the Experience of Patients and their Families. Londen: Unwin Hyman.

Bury, M. (1991). The sociology of chronic illness: a review of research and prospects. Sociology of health & illness, 13(4), 451-468.

Bury, M. (2001). Illness narratives: fact or fiction? Sociology of health & illness, 23(3), 263-285.

Bury, M. (2003). The Sociology of Health and Illness: A Reader. Londen: Routledge.

Bury, M., & Wood, P. H. N. (1979). Problems of communication in chronic illness. International rehabilitation medicine, 1(3), 130-134.

Butler, S., & Rosenblum, B. (1991). Cancer in two voices. San Francisco (CA): Spinsters Book Company.

Byng-Hall, J. (1991). Family scripts and loss. In F. Walsh & M. McGoldrich (Eds.), Living beyond loss. Londen: Norton.

Byng-Hall, J. (1995). Rewriting family scripts: improvisation and systems change. Londen: Guilford Press.

Byng-Hall, J. (1997). Clinical epilogue: a family's experience of adjusting to the loss of health. In J. Altschuler (Ed.), Working with chronic illness. Hampshire/Londen: MacMillan.

Callahan, E. M., Carroll, S., Revier, S. P., Gilhooly, E., & Dunn, D. (1966). The ‘sick role’in chronic illness: Some reactions. Journal of chronic diseases, 19(8), 883-897.

Capps, L., & Ochs, E. (1995). Constructing panic. Harvard: Harvard University Press.

Carricaburu, D., & Pierret, J. (1995). From biographical disruption to biographical reinforcement: The case of HIV‐positive men. Sociology of health & illness, 17(1), 65-88.

Castells, M. (2001). The internet galaxy: reflections on the internet, business, and society. Oxford: Oxford University Press.

Chan, B. (2006). Virtual communities and Chinese national identity. Journal of Chinese overseas, 2(1), 1-32.

Charmaz, K. (1983). Loss of self: a fundamental form of suffering in the chronically ill. Sociology of health & illness, 5(2), 168-195.

Charmaz, K. (1987). Struggling for a self: Identity levels of the chronically ill. Research in the sociology of health care, 6, 283-321.

Charmaz, K. (1990). ‘Discovering’chronic illness: Using grounded theory. Social science & medicine, 30(11), 1161-1172.

Charmaz, K. (1991). Good days, bad days: The self in chronic illness and time. New Brunswick (NJ): Rutgers University Press.

Charmaz, K. (1994). Identity dilemmas of chronically ill men. The Sociological Quarterly, 35(2), 269-288.

Charmaz, K. (1995). The body, identity, and self. The Sociological Quarterly, 36(4), 657-680.

Charmaz, K. (1999). Stories of suffering: Subjective tales and research narratives. Qualitative health research, 9(3), 362-382.

Charmaz, K. (2000). Experiencing chronic illness. In G. L. Albrecht, R. Fitzpatrick, & S. C. Scrimshaw (Eds.), Handbook of social studies in health and medicine (pp. 277-292).

Charmaz, K. (2006). Constructing grounded theory. Londen: Sage.

Charmaz, K. (2011). A constructivist grounded theory analysis of losing and regaining a valued self. In K. Charmaz & K. McMullen (Eds.), Five ways of doing qualitative analysis: Phenomenological psychology, grounded theory, discourse analysis, narrative research, and intuitive inquiry (pp. 165-204). New York/Londen: The Guilford Press.

Charmaz, K., & Mitchell, R. G. (2007). Grounded Theory in Ethnography. In P. Atkinson, A. Coffey, S. Delamont, J. Lofland, & L. Lofland (Eds.), Handbook of ethnography (pp. 160-176). Londen: Sage.

Charmaz, K., & Olesen, V. (1997). Ethnographic research in medical sociology its foci and distinctive contributions. Sociological methods & research, 25(4), 452-494.

Charon, R. (2006). Narrative medicine: honoring the stories of illness. Oxford: Oxford University Press.

Charon, R., & Montello, M. (2002). Stories matter: the role of narrative in medical ethics. New York/Londen: Routledge.

Charteris-Black, J. S., C. (2010). Gender and the language of illness. Basingstoke: Palgrave Macmillan.

Chaudoir, S. R., Earnshaw, V. A., Andel, S., & Nettleton, S. (1995). "Discredited" Versus "Discreditable": Understanding How Shared and Unique Stigma Mechanisms Affect Psychological and Physical Health Disparities. Basic Applied Social Psychology, 35(1), 75-87.

Chen, S. S., Hall, G. J., & Johns, M. D. (2004). Research paparazzi in cyberspace: The voices of the researched. In M. D. Johns, S. S. Chen, & G. J. Hall (Eds.), Online social research: Methods, issues, and ethics (pp. 157-175). New York (NY): Peter Lang.

Ching, C. C., & Foley, B. J. (2012). Constructing the self in a digital world. Cambridge: Cambridge University Press.

Chiseri-Strater, E., & Stone Sunstein, B. (1997). FieldWorking: Reading and Writing Research. Upper Saddle River (NJ): Blair Press.

Clifford, J. (1997). Spatial Practices: Fieldwork, Travel, and the Discipline of Anthropology. In A. G. J. Ferguson (Ed.), Anthropological Locations: Boundaries and Grounds of a Field Science (pp. 185-222). Berkeley, CA: University of California Press.

Cluff, L. E. (1981). Chronic disease, function and the quality of care. Journal of chronic diseases, 34(7), 299-304.

Cockerham, W. C. (2001). Sick Role. In W. C. Cockerham, R. Dingwall, & S. R. Quah (Eds.), The Wiley Blackwell Encyclopedia of Health, Illness, Behavior, and Society. New York: John Wiley & Sons.

Conrad, P. (1987). The experience of illness: recent and new directions. Res Sociol Health Care, 6, 1-31.

Corbin, J., & Strauss, A. L. (1987). Accompaniments of chronic illness: Changes in body, self, biography, and biographical time. Research in the sociology of health care, 6(3), 249-281.

Corbin, J., & Strauss, A. L. (1988). Unending work and care: Managing chronic illness at home. Hoboken (NJ): Jossey-Bass.

Corbin, J., & Strauss, A. L. (1991). A nursing model for chronic illness management based upon the trajectory framework. Scholarly inquiry for nursing practice, 5(3), 155-174.

Crane, D. (1994). The sociology of culture: emerging theoretical perspectives. Londen: Blackwell Publishers.

Crichton, S., & Kinash, S. (2003). Virtual Ethnography: Interactive Interviewing Online as Method. Canadian Journal of Learning and Technology, 29(2), n2.

Csordas, T. J. (1994). Embodiment and experience: The existential ground of culture and self (Vol. 2). Cambridge: Cambridge University Press.

Curtin, M., & Lubkin, I. (1995). What is chronicity. In I. Lubkin (Ed.), Chronic illness: Impact and interventions (pp. 3-25). Subdury (MA): Jones & Bartlett.

De Keyser, F. (1996). Reuma leren begrijpen. Tielt/Warnsveld: Lannoo NV.

De Klerk, M. M. Y. (2002). Rapportage gehandicapten. Maatschappelijke positie van mensen met lichamelijke beperkingen of verstandelijke hadicaps. Retrieved from Den Haag:

De Koster, W. (2010). 'Nowhere I could talk like that'. (Doctoraat), Erasmus Universiteit Rotterdam, Rotterdam.  

De Maeseneer, J. (2012). Multimorbiditeit, doelgeoriënteerde zorg en sociale rechtvaardigheid. Huisarts Nu, 41(3), 12-19.

De Maeseneer, J. (2016). [Interprofessionele strategieën voor chronische zorg].

Decuman, S. (2015). Allen actief... ook met reuma. Deel 3. Brussel: FRWO

Dicks, B., Mason, B., Coffey, A., & Atkinson, P. (2005). Qualitative research and hypermedia: Ethnography for the digital age. Londen: Sage.

DiNucci, D. (1999). Fragmented future. Print, 53(4), 32, 221-222.

Domínguez, D., Beaulieu, A., Estalella, A., Gómez, E., Schnettler, B., & Read, R. (2007). Virtual Ethnography. Forum Qualitative Social Research, 8, 3.

Donnelly, G. F. (1993). Chronicity: Concept and reality. Holistic nursing practice, 8(1), 1-7.

Douglas, N. (2014). It’s Supposed to Look Like Shit: The Internet Ugly Aesthetic. Journal of Visual Culture, 13(3), 314-339.

Driskell, R. B., & Lyon, L. (2012). Are virtual communities true communities? Examining the environments and elements of community. City & Community, 1(4), 373-390.

Edler, D. (2012). The Artist Who Started the What People Think I Do/What I Really Do Meme.   Retrieved from http://hyperallergic.com/47191/the-artist-who-started-the-what-people-t…

Einar Himma, K., & Tavani, H. T. (2008). The handbook of information and computer ethics. Hoboken, NJ: John Wiley & Sons, Inc.

Eisenberg, L. (1977). Disease and illness Distinctions between professional and popular ideas of sickness. Culture, medicine and psychiatry, 1(1), 9-23.

Elewaut, D., De Keyser, F., Goemaere, S., Jacques, P., Mielants, H., Smith, V., . . . Wittoek, R. (2013). Problemen van het bewegingsstelsel: reumatologie. Gent: Universiteit Gent.

Elfant, E., Gall, E., & Perlmuter, L. C. (1999). Learned illness behavior and adjustment to arthritis. Arthritis care and research, 12(6), 411-416.

Elgesem, D. (2002). What is special about the ethical issues in online research? Ethics and information technology, 4(3), 195-203.

Ellis, C. (1995). Final negotiations: a story of love, loss, and chronic illness. Philadelphia (PA): Temple.

Ellis, C. (2007). Telling secrets, revealing lives relational ethics in research with intimate others. Qualitative inquiry, 13(1), 3-29.

Ellison, N. B., Steinfield, C., & Lampe, C. (2011). Connection strategies: Social capital implications of Facebook-enabled communication practices. New media & society, XX(X), 1-20.

Emerson, R., Fretz, R., & Shaw, L. L. (1995). Writing ethnographic notes. Chicago (IL): University of Chicago.

Emerson, R. E. (2004). Working with 'key incidents'. In C. Seale, G. Gobo, J. Gubrium, & D. Silverman (Eds.), Qualitative research practice. Londen: Sage.

Ester, P., & Vinken, H. (2003). Debating civil society: on the fear for civic decline and hope for the internet alternative. International Sociology, 18(4), 659-680.

Etzioni, A., & Etzioni, O. (1999). On virtual, democratic communities. In A. Feenberg & D. Barney (Eds.), Community in the digital age. Philosophy and practice. Lanham/Boulder/New York/Toronto/Oxford: Rowman & Littlefield Publishers, Inc.

Evans, J., Frank, B., Oliffe, J. L., & Gregory, D. (2010). Health, illness, men and masculinities (HIMM): a theoretical framework for understanding men and their health. Journal of mental health, 8(1), 7-15.

Fagerhaugh, S. (1975). Getting around with emphysema. In A. L. Strauss & B. G. Glaser (Eds.), Chronic Illness and the Quality of Life. St. Louis (MO): Mosby.

Featherstone, M., Hepworth, M., & Turner, B. S. (1991). The Body: Social Process and Cultural Theory. Londen: Sage.

Feldman, D. J. (1974). Chronic disabling illness: A holistic view. Journal of chronic diseases, 27(6), 287-291.

Ferguson, T. (1996). Health Online. Reading (MA): Addison-Wesley.

Fernback, J. (2007). Beyond the diluted community concept: a symbolic interactionist perspective on online social relations. New media & society, 9(1), 49-69.

Fine, M., & Asch, A. (1988). Disability beyond stigma: Social interaction, discrimination, and activism. Journal of Social Issues, 44(1), 3-21.

Forster, P. M. (2004). Psychological sense of community in groups on the internet. Behaviour Change, 21(2), 141-146.

Foster, D. (1997). Community and identity in the electronic village. In D. Porter (Ed.), Internet culture. Londen: Routledge.

Fox, N., & Roberts, C. (1999). GPs in cyberspace: the sociology of a virtual community. The Sociological Review, 47(4), 643-671.

Fox, S., & Fallows, D. (2003). Internet Health Resources.   Retrieved from http://www.pewinternet.org/2003/07/16/internet-health-resources/

Fox, S., & Rainie, L. (2002). Vital Decisions. How Internet Users Decide What Information to Trust When They or Their Loved Ones Are Sick.   Retrieved from http://www.pewinternet.org/2002/05/22/vital-decisions-a-pew-internet-he…

Frank, A. (1991). At the will of the body: reflections on illness. Boston (MA): Houghton Mifflin.

Frank, A. (1995). The Wounded Storyteller: body, illness, and ethics. Chicago: University of Chicago Press.

Frank, A. (1996). Reconciliatory Alchemy: Bodies, Narratives and Power. Body & Society, 2(3), 53-71.

Frank, A. (1997). Illness as moral occasion: restoring agency to ill people. Health:, 1(2), 131-148.

Frank, A. (2010). Letting stories breathe: A socio-narratology. Chicago (IL): University of Chicago Press.

Freidson, E., & Lorber, J. (1972). Medical Men and their Work: a sociological reader. Chicago: Aldine Publishing Company.

Gabe, J., Bury, M., & Elston, M. A. (2004). Key concepts in medical sociology. Londen: Sage.

Gabe, J., & Monaghan, L. (2013). Key concepts in medical sociology. Londen/Thousand Oaks (CA)/New Delhi: SAGE.

Gallagher, E. B. (1976). Lines of reconstruction and extension in the Parsonian sociology of illness. Social Science & Medicine (1967), 10(5), 207-218.

Garcia, A. C., Standlee, A. I., Bechkoff, J., & Cui, Y. (2009). Ethnographic approaches to the internet and computer-mediated communication. Journal of contemporary ethnography, 38(1), 52-84.

Garro, L. C., & Mattingly, C. (1994). Narrative representations of illness and healing. Amsterdam: Elsevier science.

Gelkopf, M., & Kreitler, S. (1996). Is humor only fun, an alternative cure, or magic? The cognitive therapeutic potential of humor. Journal of Cognitive Psychotherapy, 10(4), 235-254.

Gerhardt, U. (1989). Ideas about Illness: An Intellectual and Political History of Medical Sociology. Londen: MacMillan Education UK.

Gerson, E. M. (1976). The social character of illness: deviance or politics. Social science & medicine, 10, 207-218.

Gibson, J. J. (1979). The ecological approach to visual perception. Boston (MA): Houghton Mifflin.

Giddens, A. (1979). Central problems in Social Theory : Action, Structure and Contradiction in Social Analysis. Londen: Macmillan.

Ginossar, T. (2002). Knowledge is Power: Health-information Seeking of Internet Cancer Support Group Members. University of New Mexico, Albuquerque (NM).  

Glaser, B. G., & Strauss, A. L. (1967). The Discovery of Grounded Theory: strategies for qualitative research. New Brunswick/Londen: AldineTransaction.

Goffman, E. (1963). Behavior in public places: notes on the social organization of gatherings. New York: The Free Press.

Goffman, E. (1968). Asylums: Essays on the social situation of mental patients and other inmates. Chicago (IL): Aldine Transaction.

Goffman, E. (1974). Frame Analysis: An Essay on the Organization of Experience. Boston: Northeastern University Press.

Gold, R. L. (1958). Roles in sociological field observations. Social forces, 36(3), 217-223.

Gonzalez-Polledo, E., & Tarr, J. (2014). The thing about pain: the remaking of illness narratives in chronic pain expressions on social media. New media & society, online, 1-19.

Good, B. J., & Good, M.-J. D. (1994). In the subjunctive mode: epilepsy narratives in Turkey. Social science & medicine, 38(6), 835-842.

Gordon, G. A. (1966). Role theory and illness: a sociological perspective. New Haven (CT): College & University Press.

Graham, P. (2005). Web 2.0.  Retrieved from http://www.paulgraham.com/web20.html

Granello, D. H., & Wheaton, J. E. (2004). Online data collection: Strategies for research. Journal of Counseling & Development, 82(4), 387-393.

Greil, A. L., Porter, K. L., Leitko, T. A., & Riscilli, C. (1989). Why me? Theodicies of infertile women and men. Sociology of health & illness, 11, 213-229.

Grishakova, M., & Ryan, M.-L. (2010). Intermediality and storytelling. Berlijn/New York: Walter de Gruyter GmbH & Co.

Guba, E. G., & Lincoln, Y. S. (1994). Competing paradigms in qualitative research. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research (pp. 105-118). Thousand Oaks (CA): Sage.

Guillemin, M., & Gillam, L. (2004). Ethics, reflexivity, and “ethically important moments” in research. Qualitative inquiry, 10(2), 261-280.

Guimarães, M. (2003). Doing online ethnography. University of Surrey, Surrey.  

Gustafsson, U. (2002). The sociology of health and illness reader. Cambridge (UK): Polity.

Hammersley, M., & Atkinson, P. (2007). Ethnography: Principles in practice. New York: Routledge.

Han, J. Y., Shaw, B. R., Hawkins, R. P., Pingree, S., McTavish, F., & Gustafson, D. H. (2008). Expressing positive emotions within online support groups by women with breast cancer. Journal of Health Psychology, 13, 1002-1007.

Hardey, M. (2001). 'E-health': the internet and the transformation of patients into consumers and producers of health knowledge. Information, communication and society, 4(3), 388-405.

Harper, G. L. (1992). Living with dying: finding meaning in chronic illness. Grand Rapids, Michigan: Eerdmans Pub Co.

Hayles, N. K. (2008). How we became posthuman: Virtual bodies in cybernetics, literature, and informatics. Chicago (IL): University of Chicago Press.

Hayles, N. K. (2012). How we think: Digital media and contemporary technogenesis. Chicago (IL): University of Chicago Press.

Hays, S. (2000). Constructing the Centrality of Culture and Deconstructing Sociology. Contemporary Sociology, 29, 594-602.

Haythornthwaite, C. (2007). Social Networks and Online Community. In A. N. Joinson, K. Y. A. McKenna, T. Postmes, & U.-D. Reips (Eds.), The Oxford handbook of internet psychology. Oxford: Oxford University Press.

Hensing, G., Alexanderson, K., Allebeck, P., & Bjurulf, P. (1998). How to measure sickness absence? Literature review and suggestions of five basic measures. Scandinavian Journal for Social Medicine, 26, 133-144.

Herring, S. C. (2002). Computer-mediated communication on the Internet. Annual Review of Information Science and Technology, 36, 109-168.

Herzlich, C. (1973). Health and Illness. Londen: Academia Press.

Herzlich, C., & Pierret, J. (1987). Illness and Self in Society. Baltimore: Johns Hopkins University Press.

Hibbard, E. S., & Fels, D. I. (2011). The vlogging phenomena: a deaf perspective. Paper presented at the The 13th international ACM SIGACCESS conference on Computers and accessibility, Dundee (Schotland).

Higgins, P. C. (1980). Outsiders in a hearing world: A sociology of deafness (Vol. 10). Thousand Oaks (CA): Sage Publications, Inc.

Hinchman, L. P., & Hinchman, S. (1997). Memory, identity, community: The idea of narrative in the human sciences. Albany (NY): Suny Press.

Hine, C. (2000). Virtual ethnography. Londen: Sage.

Hine, C. (2005). Virtual methods. Oxford: Berg Publishers.

Hine, C. (2015). Ethnography for the Internet: Embedded, Embodied and Everyday. Londen: Bloomsbury Publishing.

Hodkinson, P. (2007). Interactive Online Journals and Individualization. New media & society, 9(4), 625-650.

Horst, H. A., & Miller, D. (2013). Digital anthropology. Londen: A&C Black.

Høybye, M. T. (2016). Engaging the Social Texture of Internet Cancer Support Groups: Matters of Presence and Affectivity in Ethnographic Research on the Internet. Journal of contemporary ethnography, 45(4), 451-473.

Høybye, M. T., Johansen, C., & Tjørnhøy-Thomsen, T. (2005). Online interaction. Effects of storytelling in an Internet breast cancer support group. Psychooncology, 14, 211-220.

Hydén, L. C. (1997). Illness and narrative. Sociology of health & illness, 19(1), 48-69.

Hydén, L. C., & Brockmeier, J. (2008). Health, illness and culture: broken narratives. New York/Londen: Routledge.

Hydén, L. C., & Bülow, P. (2006). Medical discourse, Illness narratives. Amsterdam: Elsevier.

Jackson, P. (Writer) & P. Jackson (Director). (2001). The Lord of the Rings: The Fellowship of the Ring, The Lord of The Rings. Hollywood (CA): New Line Cinema.

Jacobus, M., Fox Keller, E., & Shuttlewoth, S. (1990). Body/Politics: women and the discourse of science. Londen: Routledge.

Jakobsson, M. (2006). Virtual Worlds & Social Interaction Design. (doctoraat), Umeå University, Umeå.  

James, A., & Hockey, J. L. (2007). Embodying health identities. Londen: Palgrave Macmillan.

Jankowski, N. W., & Van Selm, M. (2007). Research ethics in a virtual world. Guidelines and illustrations. In N. Carpentier, P. Pruulmann-Vengerfeldt, K. Nordenstreng, M. Hartmann, P. Vihalemm, B. Cammaerts, & H. Nieminen (Eds.), Media technologies and democracy in an enlarged Europe (pp. 274-284). Tartu: Tartu University Press.

Jaspers, J. P. C., & Van Middendorp, H. (2011). Psychosociale zorg bij chronische ziekten: Klinische praktijk en effectiviteit. Houten: Bohn Stafleu van Loghum.

Jenkins, H., Li, X., Domb, A., & Green, J. (2009). If it doesn’t spread, it’s dead: Creating value In a spreadable marketplace. Paper presented at the Convergence Culture Consortium, Comparative Media Studies, MIT, Boston (MA).

Jobling, R. (1988). The experience of psoriasis under treatment. In M. P. Kelly (Ed.), Living with chronic illness: The experience of patients and their families (pp. 225-244). Londen: Unwin Hyman.

Johnson, J. L., Campbell, A. C., Bowers, M., & Nichol, A.-M. (2007). Understanding the social consequences of chronic obstructive pulmonary disease. Proceedings of the Americal Thoracic Society, 4(8), 680-682.

Jones, E., Farina, A., Hastorf, A., Markus, H., Miller, D., & Scott, R. (1984). Social Stigma: The psychology of marked relationships. New York: Freeman.

Jones, S. (2005). Fizz in the Field: Toward a Basis for an Emergent Internet Studies. The Information Society, 21, 1-5.

Josefsson, U. (2005). Coping with illness online: the case of patients' online communities. Information Society, 21, 133-153.

Jurecic, A. (2012). Illness as narrative. Pittsburgh (PA): University of Pittsburgh Press.

Kadushin, C. (2012). Understanding Social Networks: Theories, Concepts, and Findings. Oxford: Oxford University Press.

Kassebaum, G. G., & Baumann, B. O. (1965). Dimensions of the sick role in chronic illness. Journal of health and human behavior, 6(1), 16-27.

Katz, J. E. (1988). A theory of qualitative methodology. In R. M. Emerson (Ed.), Contemporary field research: a collection of readings. Long Grove: Waveland Press.

Keeley-Browne, E. (2011). Cyber-Ethnography: The Emerging Research Approach for 21st Century Research Investigation In: Kurubacak, G & Yuzer, T. Handbook of Research on Transformative Online Education and Liberation: Models for Social Equality: IGI Publishers. http://www.igi-global.com/chapter/cyber-ethnography-emergingresearch-ap….

Kehoe, C. (2009). The sociology of chronic illness: an experiential account of the benefits of a sociological perspective to students of medicine. Socheolas: Limerick Student Journal of Sociology, 1(1), 46-54.

Keim-Malpass, J., & Steeves, R. H. (2012). Talking with death at a diner: young women's online narratives of cancer. Oncological Nursing Forum, 39, 373-378.

Kelle, U. (2005). Emergence vs. forcing of empirical data? A crucial problem of 'grounded theory' reconsidered. Forum Qualitative Sozialforschung, 6(2), Art. 27.

Kelly, M. P. (1992). Self, identity and radical surgery. Sociology of health & illness, 14(3), 390-415.

Kelly, M. P., & Field, D. (1996). Medical sociology, chronic illness and the body. Sociology of health & illness, 18(2), 241-257.

Kinnevy, S. C., & Enosh, G. (2002). Problems and promises in the study of virtual communities. Journal of Technology in Human Services, 19(2-3), 119-134.

Kleinman, A. (1988). The illness narratives: Suffering, healing, and the human condition. New York: Basic books.

Knuttila, L. (2011). User unknown: 4chan, anonymity and contingency. First Monday, 16(10).

Knyahnytska, Y. (2014). Looking through a Different Window: Chronic Disease Management in Public Health. Application of Symbolic Interactionism and Institutional Ethnography. The Qualitative Report, 19(21), 1-9.

Kozinets, R. V. (2002). The field behind the screen: Using netnography for marketing research in online communities. Journal of marketing research, 39(1), 61-72.

Kozinets, R. V. (2010). Netnography: Doing Ethnographic Research Online. Londen: Sage.

Kozinets, R. V. (2015). Netnography: Redefined. Londen: SAGE.

Kuipers, G. (2009). Humor styles and symbolic boundaries. Journal of Literary Theory, 3(2), 219-239.

Langellier, K. M. (1989). Personal narratives: perspectives on thoery and research. Text and Performance Quarterly, 9, 243-246.

Larkin, M. (2011). Social aspects of health, illness & healthcare. Berkshire (UK)/New York: Open University Press.

Larsen, P. D. (2009). Illness behavior. In P. D. Larsen & I. Morof Lubkin (Eds.), Chronic illness: impact and intervention. Boston/Toronto/Londen/Singapore: Jones & Bartlett Publishers.

Last, J. M. (1995). A dictionary of epidemiology. New York: Oxford University Press.

Leder, D. (1990). The absent body. Illinois: University of Chicago Press.

Lemert, E. H. D. (1967). Social problems and social control. Englewood Cliffs (NJ): Prentice-Hall.

Levine, S., & Kozloff, M. A. (1978). The sick role: Assessment and overview. Annual Review of Sociology, 4, 317-343.

Licoppe, C. (2003). 'Connected' presence: the emergence of a new repertoire for managing social relationships in a changing communication technoscape. Environment and planning D: society and space, 22, 135-156.

Lieblich, A. (1994). Introduction. In A. Lieblich & R. Josselson (Eds.), The narrative study of lives (pp. ix-xiv). Newbury Park (CA): Sage.

Lister, M., Dovey, J., Giddings, S., Grant, I., & Kelly, K. (2009). New media: a critical introduction (2 ed.). Londen/New York: Routledge.

Liu, G. Z. (1999). Virtual community presence in internet relay chatting. Journal of computer-mediated communication, 5(1), http://jmc.indiana.edu/vol5/issue1/liu.html.

Livingstone, S. (2008). Taking Risk Opportunities in Youthful Content Creation: Teenagers' use of social networking sites for intimacy, privacy and self-exploration. New media & society, 10, 393-411.

Locker, D. (1983). Disability and disadvantage: the consequences of chronic illness (Vol. 252). Londen: Routledge.

Loveys, B. (1990). Transitions in chronic illness: the at-risk role. Holistic nursing practice, 4(3), 56-64.

Lucas, G. (Writer) & G. Lucas (Director). (2005). Star Wars, Episode III: Revenge of the Sith [Film]. In R. McCallum (Producer), Star Wars. Los Angeles (CA): 20th Century Fox.

Maczewski, M., Storey, M. A., & Hoskins, M. (2004). Congruent, Ethical, Qualitative Research in Internet-Mediated Research Environments. Readings in virtual research ethics: Issues and controversies, 62.

Marbach, J. J., & Lipton, J. A. (1978). Aspects of Illness Behaviour in Patients with Facial Pain. Journal of the American Dental Association, 96, 630-638.

Marmot, M., Feeney, A., Shipley, M., North, F., & Syme, S. L. (1995). Sickness absence as a measure of health status and functioning. Journal of Epidemiological Community Health, 49, 124-130.

Maslow, A., & Mittleman, B. (1981). The meaning of healthy (normal) and sick (abnormal). In A. L. Caplan, H. T. Engelhardt, & J. J. McCartney (Eds.), Concepts of Health and Disease. Massachusetts: Addison-Wesley.

Mattingly, C. (1994). The concept of therapeutic ‘emplotment’. Social science & medicine, 38(6), 811-822.

Matzat, U. (2004). Cooperation and Community an the Internet: Past Issues and Present Perspectives for Theoretical-Empirical Internet Research. Analyse & kritik, 26(1), 63-90.

Maxwell, J. A. (2004). Qualitative Research Design: An Interactive Approach. Thousand Oaks (CA): Sage.

Mayo, L. (1956). Guides to action on chronic illness. Commission on Chronic Illness. New York (NY): National Health Council.

McBride, D. (2011). Cancer survivors find blogging improves quality of life. ONS Connect, 26, 20.

McGrenere, J., & Ho, W. (2000). Affordances: Clarifying and evolving a concept. Paper presented at the Graphics interface, Montréal.

Merriam, S. B. (2002). Qualitative Research in Practice: Examples for Discussion and Analysis. San Francisco (CA): Jossey-Bass.

Meyer, J. C. (2000). Humor as a double–edged sword: Four functions of humor in communication. Communication Theory, 10(3), 310-331.

Milkie, M. A., & Denny, K. E. (2014). Changes in the Cultural Model of Father Involvement: Descriptions of Benefits to Fathers, Children, and Mothers in Parents’ Magazine, 1926-2006. Journal of Family Issues, 35(2).

Millard, R. W., & Fintak, P. A. (2002). Use of the Internet by patients with chronic illness. Disease Management and Health Outcomes, 10(3), 187-194.

Milner, R. M. (2012). The World Made Meme: Discourse and Identity in Participatory Media. (doctoraat), Kansas University, Lawrence (KS).  

Miltner, K. M. (2014). "There's no place for lulz on LOLcats": the role of gennre, gender, and group identity in the interpretation and enjoyment of an Internet meme. First Monday, 19(8).

Mishler, E. G. (1981). Social Contexts of Health, Illness, and Patient Care. Cambridge: CUP Archive.

Mishler, E. G. (1984). The discourse of medicine: Dialectics of medical interviews (Vol. 3). Westport (CT): Greenwood Publishing Group.

Mishler, E. G. (1986). The analysis of interview-narratives. In T. R. Sarbin (Ed.), Narrative psychology: The storied nature of human conduct. Westport (CT): Praeger Publishers/Greenwood Publishing Group.

Mol, A. (2002). The body multiple: Ontology in medical practice. Durham (NC): Duke University Press.

Mold, J. W., Blake, G. H., & Becker, L. A. (1991). Goal-oriented medical care. Family Medicine, 23, 46-51.

Morini, R. (2016). Memebook: Parlare con i meme su Facebook, alcuni casi esemplari.   Retrieved from http://s3.amazonaws.com/academia.edu.documents/45315915/Memebook.pdf?AW…

Morof Lubkin, I., & Larsen, P. D. (2013). Chronic illness: impact and intervention. Burlington (MA): Jones & Bartlett Learning.

Morrison, A. (2014). Facebook and coaxed affordances. In A. Poletti & J. Rak (Eds.), Identity technologies: constructing the self online (pp. 112-131). Madison (WI): The University of Wisconsin Press.

Mortelmans, D. (2013). Handboek kwalitatieve onderzoeksmethoden: Acco Leuven.

Murdock, G. (1997). Thin descriptions: questions of method in cultural analysis. In J. McGuigain (Ed.), Cultural methodologies (pp. 178-192). Londen: Sage.

Murphy, R. F. (1987). The body silent. New York (NY): H. Holt.

Nettleton, S. (1995). The sociology of health & illness. Cambridge (UK): Polity Press.

Nieckarz Jr., P. P. (2005). Community in Cyber Space? The role of internet in facilitating and maintaining a community of live music collecting and trading. City & Community, 4(4), 403-423.

Nijhof, G. (1995). Parkinson's disease as a problem of shame in public appearance. Sociology of health & illness, 17, 193-205.

Nip, J. Y. M. (2004). The relationship between online and offline communities: the case of the queer sisters. Media, Culture & Society, 26(3), 409-428.

Norman, D. A. (1988). The psychology of everyday things. New York (NY): Basic Books.

O'Neill, E. S., & Morrow, L. L. (2001). The symptom experience of women with chronic illness. Journal of Advanced Nursing, 33(2), 257-268.

O'Reilly, T. (2005). What is Web 2.0: Design Patterns and Business Models for the Next Generation of Software.  Retrieved from http://www.oreilly.com/pub/a/web2/archive/what-is-web-20.html

Orgad, S. (2004). Just do it! The online communication of breast cancer as a practice of empowerment. New York: Peter Lang.

Orgad, S. (2005a). Storytelling online. Talking breast cancer on the Internet. New York: Peter Lang Publishing.

Orgad, S. (2005b). The transformative potential of online communication: the case of breast cancer patients' Internet spaces. Feminist Media Studies, 5, 141-161.

Orgad, S. (2006). The cultural dimensions of online communication: A study of breast cancer patients' Internet spaces. New media & society, 8, 877.

Ortner, S. (1995). Resistance and the problem of ethnographic refusal. Comparative Studies in Society and History, 37(1), 173-193.

Orton-Johnson, K., & Prior, N. (2013). Digital sociology: Critical perspectives. Londen: Palgrave Macmillan.

Padgett, D. (2004). Coming of age: theoretical thinking, social responsibility, and a global perspective in qualitative research. In D. Padgett (Ed.), The qualitative research experience (pp. 297-315). Belmont (CA): Wadsworth/Thomson Learning.

Paget, M. A. (1993). A complex sorrow: reflections on cancer and an abbreviated life. Philadelphia (PA): Temple.

Papadakis, M. C. (2003). Computer-mediated communities: the implications of information, communication, and computational technologies for creating community online. Arlington: SRI International.

Parsons, T. (1951a). Illness and the role of the physician: a sociological perspective. American Journal of Orthopsychiatry, 21(3), 452-460.

Parsons, T. (1951b). The social system. New York: Routledge.

Patton, M. Q. (2002). Qualitative research and evaluation methods. Thousand Oaks (CA): Sage.

Peirce, C. S. (1878/1958). Collected Papers. Cambridge (MA): Harvard University Press.

Pierret, J. (2003). The illness experience: state of knowledge and perspectives for research. Sociology of health & illness, 25(3), 4-22.

Pinder, R. (1995). Bringing back the body without the blame? The experience of ill and disabled people at work. Sociology of health & illness, 17, 605-631.

Pink, S., Horst, H. A., Postill, J., Hjorth, L., Lewis, T., & Tacchi, J. (2015). Digital Ethnography: Principles and Practice. Londen: SAGE.

Pitts, V. (2004). Illness and Internet empowerment: writing and reading breast cancer in cyberspace. Health Interdisciplinary: Journal of Social Studies in Health, Illness & Medicine, 8, 33-59.

Plummer, K. (2001). Documents of Life 2: An Invitation to Critical Humanism. Thousand Oaks (CA): Sage.

Poletti, A., & Rak, J. (2014). Identity technologies: constructing the self online. Madison (WI)/Londen: The University of Wisconsin Press.

Porter, C. E. (2004). A typology of virtual communities: a multidisciplinary foundation for future research. Journal of computer-mediated communication, 10(1), http://jcmc.indiana.edu/vol10/issue11/porter.html.

Pound, P., Gompertz, P., & Ebrahim, S. (1998). Illness in the context of older age: the case of stroke. Sociology of health & illness, 20, 489-506.

Prus, R. (1987). Generic Social Processes: Maximizing Conceptual Development in Ethnographic Research. Journal of contemporary ethnography, 16(3), 250-293.

Prus, R. C. (1996). Symbolic interaction and ethnographic research: Intersubjectivity and the study of human lived experience. Albany (NY): SUNY press.

Radley, A. (1989). Style, discourse and constraint in adjustment to chronic illness. Sociology of health & illness, 11(3), 230-252.

Radley, A. (1993). Worlds of illness. Londen/New York: Routledge.

Radley, A. (1994). Making sense of illness: The social psychology of health and disease. Londen: Sage.

Radley, A., & Billig, M. (1996). Accounts of health and illness: Dilemmas and representations. Sociology of health & illness, 18(2), 220-240.

Radley, A., & Green, R. (1985). Styles of adjustment to coronary graft surgery. Social science & medicine, 20(5), 461-472.

Radley, A., & Green, R. (1987). Chronic illness as adjustment: a methodology and conceptual framework. Sociology of health & illness, 11(3), 230-252.

Rainie, L., & Kommers, N. (2002). The use of the internet at major life moments.   Retrieved from http://www.pewinternet.org/reports/toc.asp?Report=58

Reading, C. (2012). Meme Watch: ‘What People Think I Do Versus What I Really Do’ Reminds Us That All Jobs Kinda Suck.   Retrieved from http://uproxx.com/webculture/meme-watch-what-people-think-i-do-versus-w…

Reuben, D. B., & Tinetti, M. E. (2012). Goal-Oriented Patient Care - an alternative health outcomes paradigm. New England Journal of Medicine, 366, 777-779.

Rice, R. E., & Katz, J. E. (2001). The Internet and health communication: experiences and expectations. Londen: Sage.

Riessman, C. K. (1993). Narrative analysis (Vol. 30). Boston: Sage.

Riessman, C. K. (2008). Narrative methods for the human sciences. Londen: Sage.

Rigutto, C. (2014). Generazione meme.  Retrieved from http://www.cowinning.it/magazine/meme/

Roberts, L. D., Smith, L. M., & Pollock, C. (2002). MOOing till the cows come home: the search for sense of community in virtual environments. In A. T. Fisher, C. C. Sonn, & B. J. Bishop (Eds.), Psychological sense of community: research, applications, and implications. New York: Kluwer Academic/Plenum Publishers.

Robinson, I. (1989). Multiple Sclerosis. Londen: Routledge.

Röing, M., & Sanner, M. (2015). A meta-ethnographic synthesis on phenomenographic studies of patients' experiences of chronic illness. Qualitative studies on health and well-being, 10.

Rose, A. M. (1963). Conditions for irrational choices. Social Research, 30(2), 143-156.

Rosen, A. (2010). Iz in ur meme / aminalizin teh langwich: A linguistic study of LOLcats. (bachelor), Goucher College, Baltimore (MD).  

Roth, J. A., & Conrad, P. (1987). The experience and management of chronic illness. Bingley (UK): Jai Press.

Sandaunet, A.-G. (2008). A space for suffering? Communicating breast cancer in an online self-help context. Qualitative health research, 18, 1631-1641.

Sandoz. (1998). Prednison Sandoz (bijsluiter).   Retrieved from https://www.apotheekkennisbank.nl/sites/default/files/content/leaflets/…

Sandoz. (2014). Methotrexaat Sandoz (bijsluiter).   Retrieved from http://db.cbg-meb.nl/Bijsluiters/h28637.pdf

Sanjek, R. (1990). Fieldnotes: the makings of anthropology. Ithaca: Cornell University Press.

Sassenberg, K. (2002). Common bond and common identity groups on the itnernet: attachment and normative behavior in on-topic and off-topic chats. Group dynamics: theory, research, and practice, 6(1), 27-37.

Scambler, G. (1989). Epilepsy. Londen: Tavistock Press.

Scambler, G., & Hopkins, A. (1986). Being epileptic: coming to terms with stigma. Sociology of health & illness, 8(1), 26-43.

Schutz, A. (1962). Collected Papers, Volume 1: The Problem of Social Reality. Den Haag: Martinus Nijhoff.

Schwandt, T. A. (1994). Constructivist, interpretivist approaches to human inquiry. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research (pp. 118-137). Thousand Oaks (CA): Sage.

Scott, R. (1969). The making of blind men. New York: Transaction Publishers.

Scott, S., & Morgan, D. (1993). Body Matters: Essays on the Sociology of the Body. Londen: Falmer Press.

Segall, A. (1976). The sick role concept: Understanding illness behavior. Journal of health and social behavior, 17(2), 162-169.

Shafer, L. (2012). I Can Haz an Internet Aesthetic?!? LOLCats and the Digital Marketplace. Paper presented at the NEPCA, Rochester (NY).

Shakespeare, T. (1998). The Disability Reader: social science perspectives. Londen/New York: Cassell.

Sharf, B. F. (1997). Communicating breast cancer on-line: support and empowerment on the Internet. Women & health, 26(1), 65-84.

Shifman, L. (2013). Memes in a digital world: reconciling with a conceptual troublemaker. Journal of computer-mediated communication, 18(3), 362-377.

Shilling, C. (1993). The Body and Social Theory. Londen: Sage.

Shilling, C. (2002). Culture, the ‘sick role’and the consumption of health. The British journal of sociology, 53(4), 621-638.

Silver, D. (2000). Looking backwards, looking forward: cyberculture studies 1990-2000. In D. Gauntlett (Ed.), Web.Studies: rewiring media studies for the digital age. Oxford: Oxford University Press.

Silverman, T. (2001). Expanding Community: The internet and relational theory. Community, Work & Family, 4(2), 231-238.

Skågeby, J. (2010). Gift-giving as a conceptual framework: framing social behavior in online networks. Journal of Information Technology, 25(2), 170-177.

Skågeby, J. (2011). Online Ethnographic Methods: Towards a Qualitative Understanding of Virtual Community Practices. Linköping: Linköping University Press.

Skitka, L. J., & Sargis, E. G. (2006). The Internet as psychological laboratory. Annu. Rev. Psychol., 57, 529-555.

Smith, D. (1987). The Everyday World as Problematic: A Feminist Sociology. Toronto: University of Toronto Press.

Smulders, G., & van Kerkhof, P. (2005). De WMO in zicht: basisgegevens doelgroepen in de regio Hart voor Brabant. 's Hertogenbosch: GGD Hart voor Brabant.

Somers, M. R., & Gibson, G. D. (1994). Reclaiming the epistemological ‘other’: narrative and the social constitution of identity. Social theory and the politics of identity, 23(5), 605-650.

Sosnowy, C. (2014). Practicing patienthood online: Social media, chronic illness, and lay expertise. Societies, 4(2), 316-329.

Spradley, J. P. (1980). Doing Participant Observation. New York: Holt, Rhinehart & Winston.

Statuut chronische aandoening, Wetsontwerp 27/11/2012 C.F.R. § 6 (2012).

Stehouwer, C. D. A., Koopmans, R. P., & Van der Meer, J. (2010). Interne Geneeskunde. Houten: Bohn Stafleu van Loghum.

Stern, P. (1980). Grounded theory methodology: Its uses and processes. Image, 12(1), 20-23.

Stokes, J., Noren, J., & Shindell, S. (1982). Definition of terms and concepts applicable to clinical preventive medicine. Journal of community health, 8(1), 33-41.

Strauss, A. L., & Glaser, B. G. (1975). Chronic illness and the quality of life. St. Louis (MO): Mosby.

Strickland, J. (2013). How Web 2.0 Works.  Retrieved from http://computer.howstuffworks.com/web-20.htm

Strickland, K. (2014). A phenomenological exploration of the biographical impact of newly diagnosed MS on the individual and their support person. (Doctoraat), Edinburgh Napier University.  

Stryker, C. (2011). Epic win for Anonymous: how 4chan's army conquered the Web. New York (NY): Overlook Duckworth.

Swidler, A. (1986). Culture in Action: Symbols and Strategies. American Sociological Review, 51, 273-286.

Szreter, S., & Woolcock, M. (2003). Health by association? Social capital, social theory and the political economy of public health. International Journal of Epidemiology, 33, 1-18.

Thomas, C. (2007). Sociologies of disability and illness: contested ideas in disability studies and medical sociology. Hampshire (UK): Palgrave Macmillan.

Thomas, C. (2012). Theorising disability and chronic illness: Where next for perspectives in medical sociology? Social Theory & Health, 10(3), 209-228.

Timmermans, S., & Haas, S. (2008). Towards a sociology of disease. Sociology of health & illness, 30(5), 659-676.

Todd, A. D. (1994). Double vision: an east-west collaboration for coping with cancer. Hannover: Wesleyan University Press.

Toombs, S. K. (1992). The body in multiple sclerosis: A patient’s perspective. In D. Leder (Ed.), The body in medical thought and practice (pp. 127-137). Dordrecht: Springer.

Toombs, S. K. (2013). The meaning of illness: A phenomenological account of the different perspectives of physician and patient. Dordrecht: Springer Science & Business Media.

Toombs, S. K., Barnard, D., & Carson, R. A. (1995). Chronic illness: from experience to policy. Bloomington (IN): Indiana University Press.

Townsend, A., Wyke, S., & Hunt, K. (2006). Self-managing and managing self: practical and moral dilemmas in accounts of living with chronic illness. Chronic illness, 2(3), 185-194.

Tsatsou, P. (2014). Internet studies: past, present and future directions. Oxon: Routledge.

Turner, B. S. (1984). The Body and Society. Oxford: Blackwell.

Turner, B. S. (1992). Regulating Bodies: Essays in Medical Sociology. Londen: Routledge.

Tuszynski, S. (2008). IRL (In Real Life): Breaking down the binary between online and offline social interaction. Bowling Green (OH): Bowling Green State University.

Twaddle, A. C. (1969). Health decisions and sick role variations: an exploration. Journal of health and social behavior, 10, 105-115.

Twaddle, A. C., & Hessler, R. M. (1977). A sociology of health. St. Louis (MO): The CV Mosby Company.

Urquhart, C. (2012). Grounded theory for qualitative research: a practical guide. Londen: Sage.

van de Fliert, L. H. (2012). All your memes are belong to us - Gemeenschap, identiteit en de vermainstreaming van een subcultuur. (master), Universiteit van Utrecht, Utrecht.  

Van den Bos, G. A. M. (1989). Zorg van en voor chronisch zieken. (doctoraat), Universiteit van Amsterdam, Amsterdam.  

Van den Bos, G. A. M., Danner, S. A., de Haan, R. J., & Schadé, E. (2000). Chronisch zieken en gezondheidszorg. Houten: Springer.

Van der Heyden, J. (2008). Gezondheidsenquête België 2008. Brussel: Wetenschappelijk Instituut Volksgezondheid.

Van Maanen, J. (2011). Tales of the field: On writing ethnography. Chicago (IL): University of Chicago Press.

Van Poppel, M. N., De Vet, H. C., Koes, B. W., Smid, T., & Bouter, L. M. (2002). Measuring sick leave: a comparison of self-reported data on sick leave and data from company records. Occupational Medicine, 52(8), 485-490.

Varul, M. Z. (2010). Talcott Parsons, the sick role and chronic illness. Body & Society, 16(2), 72-94.

Vilhauer, R. P. (2009). Perceived benefits of online support groups for women with metastatic breast cancer. Women Health, 49, 381-404.

Vlassoff, C. (2007). Gender differences in determinants and consequences of health and illness. Journal of Health, Population and Nutrition, 25(1), 47-61.

Vrancken, M. A. E. (1989). Schools of thought on pain. Social science & medicine, 29(3), 435-444.

Walker Rettberg, J. (2008). Blogging. Cambridge: Cambridge Polity Press.

Ward, K. J. (1999). Cyber-ethnography and the emergence of the virtually new community. Journal of Information Technology, 14(1), 95-105.

Weitz, R. (1991). Life with AIDS. New Brunswick (NJ): Rutgers University Press.

Wellman, B. (2001). Physical place and cyberplace: the rise of personalized networking. International journal of urban and regional research, 25(2), 227-252.

Wellman, B. (2004). The three ages of internet studies: ten, five and zero years ago. New media & society, 6(1), 123-129.

Wellman, B., Quan-Haase, A., Boase, J., Chen, W., Hampton, I. D., & Miyata, K. (2006). The social affordances of the internet for networked individualism. Journal of computer-mediated communication, 8(3).

White, H. (1978). Tropics of discourse: essays in cultural criticism. Baltimore (MD): Johns Hopkins University Press.

White, K. (2008). An introduction to the sociology of health & illness. Londen: SAGE Publications Ltd.

Whitehead, W. E., Crowell, M. D., Heller, B. R., Robinson, J. C., Schuster, M. M., & Horn, S. (1994). Modeling and reinforcement of the sick role during childhood predicts adult illness behavior. Psychosomatic medicine, 56(6), 541-550.

Whitten, P. (2001). Health and the new media. Journal of computer-mediated communication, 6(4), speciale uitgave.

WHO. (1946). Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference. Paper presented at the International Health Conference, 19/6-22/7/1946, New York (NY).

WHO. (1980). Internation Classification of Impairments, Disabilities, and Handicaps. Genève: World Health Organization.

Wiener, C. (1975). Tolerating the uncertainty: the burden of rheumatoid arthritis. In A. L. Strauss & B. G. Glaser (Eds.), Chronic Illness and the Quality of Life. St. Louis (MO): Mosby.

Williams, G. (1984). The genesis of chronic illness: narrative re‐construction. Sociology of health & illness, 6(2), 175-200.

Williams, S. (1993). Chronic respiratory illness. Abingdon (UK): Psychology Press.

Williams, S. J. (1996). The vicissitudes of embodiment across the chronic illness trajectory. Body & Society, 2(2), 23-47.

Williams, S. J. (2000). Chronic illness as biographical disruption or biographical disruption as chronic illness? Reflections on a core concept. Sociology of health and illness, 22(1), 40-67.

Williams, S. J. (2005). Parsons revisited: from the sick role to...? Health, 9(2), 123-144.

Wilson, R. N., & Bloom, S. W. (1972). Patient-practicioner relationships. In H. E. Freeman, S. Levine, & L. G. Reeder (Eds.), Handbook of Medical Sociology. Englewood Cloffs (NJ): Prentice-Hall.

Wilson, S. M., & Peterson, L. C. (2002). The Anthropology of Online Communities. Annual Review of Anthropology, 31, 449-467.

Wood, P. (1980). Appreciating the consequences of disease: the international classification of impairments, disabilities, and handicaps. WHO Chronicle, 34(10), 376-380.

Wu, R. (1973). Behavior and illness. Upper Saddle River (NJ): Prentice Hall.

Yeandle, S., & Macmillan, R. (2003). The role of health in labour market detachment. In P. Alcock (Ed.), Work to Welfare. Cambridge: Cambridge University Press.

Zimmer, M. (2010). “But the data is already public”: on the ethics of research in Facebook. Ethics and information technology, 12(4), 313-325.

Zola, I. K. (1982). Missing pieces: A chronicle of living with a disability. Philadelphia (PA): Temple University Press.

Universiteit of Hogeschool
Master of Science in de Gezondheidsvoorlichting en -bevordering
Publicatiejaar
2016
Promotor(en)
Dr. Sander De Ridder
Kernwoorden
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