A practical guide to analysing online support forums

References

• American Psychological Association 2017, ‘Ethical principles of psychologists and code of conduct’, viewed 13 July 2017, http://www.apa.org/ethics/code/ethics-code-2017.pdf.
   Google Scholar
• Armstrong, N, Koteyko, N & Powell, J 2012, ‘Oh dear, should I really be saying that on here?: issues of identity and authority in an online diabetes community’, Health, 16, 347–365.
   PubMed Web of Science ®Google Scholar
• Attard, A & Coulson, NS 2012, ‘A thematic analysis of patient communication in Parkinson’s disease online support group discussion forums’, Computers in Human Behavior, 28, 500–506.
   Web of Science ®Google Scholar
• Ballinger, C, Yardley, L & Payne, S 2004, ‘Observation and action research’, DF Marks & L Yardley (eds.), Research Methods for Clinical and Health Psychology, SAGE Publications, London, 102–121.
   Google Scholar
• Bane, CMH, Haymaker, CMB & Zinchuk, J 2005, ‘Social support as a moderator of the big-fish-in-a-little-pond effect in online self-help support groups’, Journal of Applied Biobehavioral Research, 10, 239–261.
   Web of Science ®Google Scholar
• Bond, SC, Ahmed, HO, Hind, M, Thomas, B & Hewitt-Taylor, J 2013, ‘The conceptual and practical ethical dilemmas of using health discussion board posts as research data’, Journal of Medical Internet Research, 15, e112.
   PubMed Web of Science ®Google Scholar
• Brady, E, Segar, J & Sanders, C 2016, ‘“I always vet things”: navigating privacy and the presentation of self on health discussion boards among individuals with long-term conditions’, Journal of Medical Internet Research, 18, e274.
   PubMed Web of Science ®Google Scholar
• Braun, V & Clarke, V 2006, ‘Using thematic analysis in psychology’, Qualitative Research in Psychology, 3, 77–101.
   Google Scholar
• British Psychological Society 2017, ‘Ethics guidelines for Internet-mediated research’, viewed 13 July 2017, https://beta.bps.org.uk/sites/beta.bps.org.uk/files/Policy%20-%20Files/Ethics%20Guidelines%20for%20Internet-mediated%20Research%20%282017%29.pdf.
   Google Scholar
• Brotsky, SR & Giles, D 2007, ‘Inside the “pro-ana” community: a covert online participant observation’, Eating Disorders, 15, 93–109.
   PubMedGoogle Scholar
• Carter, I 2009, ‘Positive and negative experiences of parents involved in online self-help groups for autism’, Journal on Developmental Disabilities, 15, 44–52.
   Google Scholar
• Charmaz, K 2003, ‘Grounded theory’, JA Smith (ed.), Qualitative Psychology: A Practical Guide to Research Methods, Sage Publications, London, 81–110.
   Google Scholar
• Chen, AT 2014, ‘What’s in a virtual hug? a transdisciplinary review of methods in online health discussion forum research’, Library & Information Science Research, 36, 120–130.
   Web of Science ®Google Scholar
• Coulson, NS 2013, ‘How do online patient support communities affect the experience of inflammatory bowel disease? an online survey’, JRSM Short Reports, 4, 1–8.
   Google Scholar
• Coulson, NS, Buchanan, H & Aubeeluck, A 2007, ‘Social support in cyberspace: a content analysis of communication within a Huntington’s disease online support group’, Patient Education and Counseling, 68, 173–178.
   PubMed Web of Science ®Google Scholar
• Coulson, NS & Greenwood, N 2012, ‘Families affected by childhood cancer: an analysis of the provision of social support within online support groups’, Child: Care, Health and Development, 38, 870–877.
   PubMed Web of Science ®Google Scholar
• Coulson, NS & Shaw, RL 2013, ‘Nurturing health-related online support groups: exploring the experiences of patient moderators’, Computers in Human Behavior, 29, 1695–1701.
   Web of Science ®Google Scholar
• Coulson, NS, Smedley, R, Bostock, S, Kyle, SD, Gollancz, R, Luik, AI, Hames, P & Espie, CA 2016, ‘The pros and cons of getting engaged in an online social community embedded within digital cognitive behavioral therapy for insomnia: survey among users’, Journal of Medical Internet Research, 18, e88.
   PubMed Web of Science ®Google Scholar
• Coursaris, CK & Liu, M 2009, ‘An analysis of social support exchanges in online HIV/AIDS self-help groups’, Computers in Human Behavior, 25, 911–918.
   Web of Science ®Google Scholar
• Cummings, JN, Sproull, L & Kiesler, SB 2002, ‘Beyond hearing: where the real-world and online support meet’, Group Dynamics: Theory, Research, and Practice, 6, 78–88.
   Web of Science ®Google Scholar
• Drentea, P & Moren-Cross, JL 2005, ‘Social capital and social support on the web: the case of an Internet mother site’, Sociology of Health & Illness, 27, 920–943.
   PubMed Web of Science ®Google Scholar
• Eichhorn, KC 2008, ‘Soliciting and providing social support over the Internet: an investigation of online eating disorder support groups’, Journal of Computer-Mediated Communication, 14, 67–78.
   Web of Science ®Google Scholar
• Elo, S & Kyngäs, H 2008, ‘The qualitative content analysis process’, Journal of Advanced Nursing, 62, 107–115.
   PubMed Web of Science ®Google Scholar
• Elwell, L, Grogan, S & Coulson, NS 2011, ‘Adolescents living with cancer: the role of computer-mediated support groups’, Journal of Health Psychology, 16, 236–248.
   PubMed Web of Science ®Google Scholar
• Esquivel, A, Meric-Bernstam, F & Bernstam, EV 2006, ‘Accuracy and self correction of information received from an Internet breast cancer list: content analysis’, British Medical Journal, 332, 939–942.
   PubMed Web of Science ®Google Scholar
• Evans, M, Donelle, L & Hume-Loveland, L 2012, ‘Social support and online postpartum depression discussion groups: a content analysis’, Patient Education and Counseling, 87, 405–410.
   PubMed Web of Science ®Google Scholar
• Eysenbach, G & Till, JE 2001, ‘Ethical issues in qualitative research on Internet communities’, British Medical Journal, 323, 1103–1105.
   PubMed Web of Science ®Google Scholar
• Finfgeld-Connett, D 2015, ‘Twitter and health science research’, Western Journal of Nursing Research, 37, 1269–1283.
   PubMed Web of Science ®Google Scholar
• Finn, J 1999, ‘An exploration of helping processes in an online self-help group focusing on issues of disability’, Health & Social Work, 24, 220–231.
   PubMed Web of Science ®Google Scholar
• Freeman, LC 2004, The Development of Social Network Analysis: A Study in the Sociology of Science, Empirical Press, Vancouver, Canada.
   Google Scholar
• Friedman, BA & Reed, LJ 2007, ‘Workplace privacy: employee relations and legal implications of monitoring employee e-mail use’, Employee Responsibilities and Rights Journal, 19, 75–83.
   Google Scholar
• Galegher, J, Sproull, L & Kiesler, S 1998, ‘Legitimacy, authority, and community in electronic support groups’, Written Communication, 15, 493–530.
   Web of Science ®Google Scholar
• Gavin, J, Rodham, K & Poyer, H 2008, ‘The presentation of “pro-anorexia” in online group interactions’, Qualitative Health Research, 18, 325–333.
   PubMed Web of Science ®Google Scholar
• Giordano, J, O’Reilly, M, Taylor, H & Dogra, N 2007, ‘Confidentiality and autonomy: the challenge(s) of offering research participants a choice of disclosing their identity’, Qualitative Health Research, 17, 264–275.
   PubMed Web of Science ®Google Scholar
• Granberry, N 2007, ‘Email-from “to” to “send”’, AAOHN Journal: Official Journal of the American Association of Occupational Health Nurses, 55, 127–130.
   PubMedGoogle Scholar
• Gustafson, DH, Hawkins, RP, Pingree, S, McTavish, FM, Arora, NK, Mendenhall, J, Cella, DF, Serlin, RC, Apantaku, FM, Stewart, J & Salner, A 2001, ‘Effect of computer support on younger women with breast cancer’, Journal of General Internal Medicine, 16, 435–445.
   PubMed Web of Science ®Google Scholar
• Gustafson, DH, McTavish, FM, Hawkins, RP, Pingree, S, Arora, NK, Mendenhall, J & Simmons, GE 1998, ‘Computer support for elderly women with breast cancer’, JAMA: the Journal of the American Medical Association, 280, 1305.
   PubMed Web of Science ®Google Scholar
• Hertwig, R & Ortmann, A 2008, ‘Deception in social psychological experiments: two misconceptions and a research agenda’, Social Psychology Quarterly, 71, 222–227.
   Web of Science ®Google Scholar
• Hodges, BD, Kuper, A & Reeves, S 2008, ‘Discourse analysis’, British Medical Journal, 337, a879.
   PubMed Web of Science ®Google Scholar
• Holbrey, S & Coulson, NS 2013, ‘A qualitative investigation of the impact of peer to peer online support for women living with polycystic ovary syndrome’, BMC Women’s Health, 13, 51.
   PubMed Web of Science ®Google Scholar
• Holtz, P, Kronberger, N & Wagner, W 2012, ‘Analyzing Internet forums: a practical guide’, Journal of Media Psychology: Theories, Methods, and Applications, 24, 55–66.
   Google Scholar
• Hudson, JM & Bruckman, A 2004, ‘“Go away”: participant objections to being studied and the ethics of chatroom research’, The Information Society, 20, 127–139.
   Web of Science ®Google Scholar
• Hwang, KO, Farheen, K, Johnson, CW, Thomas, EJ, Barnes, AS & Bernstam, EV 2007, ‘Quality of weight loss advice on Internet forums’, The American Journal of Medicine, 120, 604–609e2.
   PubMed Web of Science ®Google Scholar
• Hwang, KO, Ottenbacher, AJ, Green, AP, Cannon-Diehl, MR, Richardson, O, Bernstam, EV & Thomas, EJ 2010, ‘Social support in an Internet weight loss community’, International Journal of Medical Informatics, 79, 5–13.
   PubMed Web of Science ®Google Scholar
• Im, E-O & Chee, W 2006, ‘An online forum as a qualitative research method’, Nursing Research, 55, 267–273.
   PubMed Web of Science ®Google Scholar
• Jowett, A 2015, ‘A case for using online discussion forums in critical psychological research’, Qualitative Research in Psychology, 12, 287–297.
   Web of Science ®Google Scholar
• Joyce, E & Kraut, RE 2006, ‘Predicting continued participation in newsgroups’, Journal of Computer-Mediated Communication, 11, 723–747.
   Web of Science ®Google Scholar
• Kaiser, K 2009, ‘Protecting respondent confidentiality in qualitative research’, Qualitative Health Research, 19, 1632–1641.
   PubMed Web of Science ®Google Scholar
• Kraut, R, Olson, J, Banaji, MR, Bruckman, A, Cohen, J & Couper, M 2004, ‘Psychological research online - report of board of scientific affairs’ advisory group on the conduct of research on the Internet’, American Psychologist, 59, 105–117.
   PubMed Web of Science ®Google Scholar
• Kreindler, DM 2008, ‘Email security in clinical practice: ensuring patient confidentiality’, Open Medicine, 2, e54–e59.
   PubMedGoogle Scholar
• Levin, KA 2006, ‘Study design III: cross-sectional studies’, Evidence-Based Dentistry, 7, 24–25.
   PubMedGoogle Scholar
• Loader, BD, Muncer, S, Burrows, R, Pleace, N & Nettleton, S 2002, ‘Medicine on the line? computer-mediated social support and advice for people with diabetes’, International Journal of Social Welfare, 11, 53–65.
   Web of Science ®Google Scholar
• Lomborg, S 2013, ‘Personal Internet archives and ethics’, Research Ethics, 9, 20–31.
   Google Scholar
• Luke, DA & Harris, JK 2007, ‘Network analysis in public health: history, methods, and applications’, Annual Review of Public Health, 28, 69–93.
   PubMed Web of Science ®Google Scholar
• Malik, SH & Coulson, NS 2008, ‘The male experience of infertility: a thematic analysis of an online infertility support group bulletin board’, Journal of Reproductive and Infant Psychology, 26, 18–30.
   Web of Science ®Google Scholar
• Malik, SH & Coulson, NS 2010, ‘Coping with infertility online: an examination of self-help mechanisms in an online infertility support group’, Patient Education and Counseling, 81, 315–318.
   PubMed Web of Science ®Google Scholar
• Malik, SH & Coulson, NS 2011, ‘The therapeutic potential of the Internet exploring self-help processes in an Internet forum for young people with inflammatory bowel disease’, Gastroenterology Nursing, 34, 439–448.
   PubMed Web of Science ®Google Scholar
• Malinen, S 2015, ‘Understanding user participation in online communities: a systematic literature review of empirical studies’, Computers in Human Behavior, 46, 228–238.
   Web of Science ®Google Scholar
• Matzat, U & Rooks, G 2014, ‘Styles of moderation in online health and support communities: an experimental comparison of their acceptance and effectiveness’, Computers in Human Behavior, 36, 65–75.
   Web of Science ®Google Scholar
• McKenna, KYA, Green, AS & Gleason, MEJ 2002, ‘Relationship formation on the Internet: what’s the big attraction?’, Journal of Social Issues, 58, 9–31.
   Web of Science ®Google Scholar
• Messier, R 2014, Collaboration with Cloud Computing, Syngress, Boston, USA.
   Google Scholar
• Mo, PKH & Coulson, NS 2010, ‘Living with HIV/AIDS and use of online support groups’, Journal of Health Psychology, 15, 339–350.
   PubMed Web of Science ®Google Scholar
• Mo, PKH & Coulson, NS 2012, ‘Developing a model for online support group use, empowering processes and psychosocial outcomes for individuals living with HIV/AIDS’, Psychology & Health, 27, 445–459.
   PubMed Web of Science ®Google Scholar
• Moura, J & Hutchison, D 2016, ‘Review and analysis of networking challenges in cloud computing’, Journal of Network and Computer Applications, 60, 113–129.
   Web of Science ®Google Scholar
• NESH 2014, ‘Ethical guidelines for Internet research’, viewed 16 July 2017, https://www.etikkom.no/globalassets/documents/english-publications/ethical-guidelines-for-Internet-research.pdf.
   Google Scholar
• Nonnecke, B & Preece, J 2000, ‘Lurker demographics: counting the silent’, Proceedings of the SIGCHI conference on Human Factors in Computing Systems, ACM, The Hague, The Netherlands.
   Google Scholar
• Nosek, BA, Banaji, MR & Greenwald, AG 2002, ‘E-research: ethics, security, design, and control in psychological research on the Internet’, Journal of Social Issues, 58, 161–176.
   Web of Science ®Google Scholar
• Petrovčič, A, Vehovar, V & Žiberna, A 2012, ‘Posting, quoting, and replying: a comparison of methodological approaches to measure communication ties in web forums’, Quality & Quantity, 46, 829–854.
   Web of Science ®Google Scholar
• Pfeil, U & Zaphiris, P 2010, ‘Applying qualitative content analysis to study online support communities’, Universal Access in the Information Society, 9, 1–16.
   Web of Science ®Google Scholar
• Preece, J, Nonnecke, B & Andrews, D 2004, ‘The top five reasons for lurking: improving community experiences for everyone’, Computers in Human Behavior, 20, 201–223.
   Web of Science ®Google Scholar
• Ravert, RD, Hancock, MD & Ingersoll, GM 2004, ‘Online forum messages posted by adolescents with type 1 diabetes’, Diabetes Educator, 30, 827–834.
   PubMed Web of Science ®Google Scholar
• Ridings, CM & Gefen, D 2004, ‘Virtual community attraction: why people hang out online’, Journal of Computer-Mediated Communication, 10.
   Google Scholar
• Roberts, LD 2015, ‘Ethical issues in conducting qualitative research in online communities’, Qualitative Research in Psychology, 12, 314–325.
   Web of Science ®Google Scholar
• Robinson, KM 2001, ‘Unsolicited narratives from the Internet: a rich source of qualitative data’, Qualitative Health Research, 11, 706–714.
   PubMed Web of Science ®Google Scholar
• Rodham, K, Gavin, J, Coulson, NS, Watts, LA & Heath, H 2013, ‘Let me introduce myself: the role of first posts in establishing a common-identity community in an online support forum’, Conference on Psychology and Social Harmony, Beijing, 24th May 2013, Scientific Research Publishing, USA.
   Google Scholar
• Rodham, K, Gavin, J, Lewis, SP, St Denis, JM & Bandalli, P 2013, ‘An investigation of the motivations driving the online representation of self-injury: a thematic analysis’, Archives of Suicide Research, 17, 173–183.
   PubMed Web of Science ®Google Scholar
• Rodham, K, McCabe, C & Blake, D 2009, ‘Seeking support: an interpretative phenomenological analysis of an Internet message board for people with complex regional pain syndrome’, Psychology & Health, 24, 619–634.
   PubMed Web of Science ®Google Scholar
• Sanders, C, Rogers, A, Gardner, C & Kennedy, A 2011, ‘Managing ‘difficult emotions’ and family life: exploring insights and social support within online self-management training’, Chronic Illness, 7, 134–146.
   PubMedGoogle Scholar
• Sell, J 2008, ‘Introduction to deception debate’, Social Psychology Quarterly, 71, 213–214.
   Web of Science ®Google Scholar
• Smedley, R, Coulson, N, Gavin, J, Rodham, K & Watts, L 2015, ‘Online social support for complex regional pain syndrome: a content analysis of support exchanges within a newly launched discussion forum’, Computers in Human Behavior, 51, 53–63.
   Web of Science ®Google Scholar
• Smedley, RM & Coulson, NS 2017, ‘A thematic analysis of messages posted by moderators within health-related asynchronous online support forums’, Patient Education and Counseling, 100, 1688–1693.
   PubMed Web of Science ®Google Scholar
• Smedley, RM, Coulson, NS, Gavin, J, Rodham, K & Watts, L 2016, ‘Engagement in a newly launched online support community for complex regional pain syndrome: membership growth, header analysis and introductory messages’, International Journal of Web Based Communities, 12, 147–164.
   Google Scholar
• Smith, JA & Osborn, M 2003, ‘Interpretative phenomenological analysis’, JA Smith (ed.), Qualitative Psychology: A Practical Guide to Research Methods, Sage Publications, London, 51–80.
   Google Scholar
• Stieger, S & Göritz, AS 2006, ‘Using instant messaging for Internet-based interviews’, CyberPsychology & Behavior, 9, 552–559.
   PubMedGoogle Scholar
• Thackeray, R, Crookston, BT & West, JH 2013, ‘Correlates of health-related social media use among adults’, Journal of Medical Internet Research, 15, e21.
   PubMed Web of Science ®Google Scholar
• Tichon, JG & Shapiro, M 2003, ‘The process of sharing social support in cyberspace’, CyberPsychology & Behavior, 6, 161–170.
   PubMedGoogle Scholar
• Tilley, L & Woodthorpe, K 2011, ‘Is it the end for anonymity as we know it? A critical examination of the ethical principle of anonymity in the context of 21st century demands on the qualitative researcher’, Qualitative Research, 11, 197–212.
   Web of Science ®Google Scholar
• Van Den Hoonaard, WC 2003, ‘Is anonymity an artifact in ethnographic research?’, Journal of Academic Ethics, 1, 141–151.
   Google Scholar
• Van Der Houwen, K, Stroebe, M, Schut, H, Stroebe, W & Van Den Bout, J 2010, ‘Online mutual support in bereavement: an empirical examination’, Computers in Human Behavior, 26, 1519–1525.
   Web of Science ®Google Scholar
• Van Uden-Kraan, CF, Drossaert, CHC, Taal, E, Lebrun, CEI, Drossaers-Bakker, KW, Smit, WM, Seydel, ER & Van De Laar, MAFJ 2008, ‘Coping with somatic illnesses in online support groups: do the feared disadvantages actually occur?’, Computers in Human Behavior, 24, 309–324.
   Web of Science ®Google Scholar
• Van Uden-Kraan, CF, Drossaert, CHC, Taal, E, Seydel, ER & Van De Laar, MAFJ 2009, ‘Participation in online patient support groups endorses patients’ empowerment’, Patient Education and Counseling, 74, 61–69.
   PubMed Web of Science ®Google Scholar
• Van Uden-Kraan, CF, Drossaert, CHC, Taal, E, Shaw, BR, Seydel, ER & Van De Laar, MAFJ 2008, ‘Empowering processes and outcomes of participation in online support groups for patients with breast cancer, arthritis, or fibromyalgia’, Qualitative Health Research, 18, 405–417.
   PubMed Web of Science ®Google Scholar
• Voelpel, SC, Eckhoff, RA & Förster, J 2008, ‘David against Goliath? group size and bystander effects in virtual knowledge sharing’, Human Relations, 61, 271–295.
   Web of Science ®Google Scholar
• Wen, K-Y, McTavish, FM, Kreps, G, Wise, M & Gustafson, DH 2011, ‘From diagnosis to death: A case study of coping with breast cancer as seen through online discussion group messages’, Journal of Computer-Mediated Communication, 16, 331–361.
   PubMed Web of Science ®Google Scholar
• Wiedemann, G 2013, ‘Opening up to big data: computer-assisted analysis of textual data in social sciences’, Forum: Qualitative Social Research, 14, art 23.
   Google Scholar
• Wilkinson, D & Thelwall, M 2011, ‘Researching personal information on the public web: methods and ethics’, Social Science Computer Review, 29, 387–401.
   Web of Science ®Google Scholar
• Willig, C 2003, ‘Discourse analysis’, JA Smith (ed.), Qualitative Psychology: A Practical Guide to Research Methods, Sage Publications, London, 159–183.
   Google Scholar
• Winzelberg, A 1997, ‘The analysis of an electronic support group for individuals with eating disorders’, Computers in Human Behavior, 13, 393–407.
   Web of Science ®Google Scholar
• Yardley, L & Murray, M 2004, ‘Qualitative analysis of talk and text: discourse and narrative analysis’, DF Marks & L Yardley (eds.), Research Methods for Clinical and Health Psychology, Sage Publications, London, 90–101.
   Google Scholar
• Yechiam, E & Barron, G 2003, ‘Learning to ignore online help requests’, Computational & Mathematical Organization Theory, 9, 327–339.
   Google Scholar
• Zimmer, M 2010, ‘“But the data is already public”: on the ethics of research in Facebook’, Ethics and Information Technology, 12, 313–325.
   Web of Science ®Google Scholar
• Zrebiec, JF & Jacobson, AM 2001, ‘What attracts patients with diabetes to an Internet support group? a 21-month longitudinal website study’, Diabetic Medicine, 18, 154–158.
   PubMed Web of Science ®Google Scholar