‘They all supported me but I felt like I suddenly didn't belong anymore’: an exploration of perceived disadvantages to online support seeking

References

• Boivin J, Buntin L, Collins JA, Nygren KG. International estimates of infertility prevalence and treatment-seeking: potential need and demand for infertility medical care. Hum Reprod 2007;22:1506–1512.
   PubMed Web of Science ®Google Scholar
• Lechner L, Bolman C, van Dalen, A. Definite involuntary childlessness: associations between coping, social support and psychological distress. Hum Reprod 2007;22:288–294.
   PubMed Web of Science ®Google Scholar
• Valentine DP. Psychological impact of infertility: identifying issues and needs. Soc Work Health Care 1986;11:61–69.
   PubMed Web of Science ®Google Scholar
• Greil AL. Infertility and psychological distress: a critical review of the literature. Soc Sci Med 1997;45:1679–1704.
   PubMed Web of Science ®Google Scholar
• Dhillon, R, Cumming CE, Cumming DC. Psychological well-being and coping patterns in infertile men. Fertil Steril 2000;74:702–709.
   PubMed Web of Science ®Google Scholar
• Brucker SP, McKenry PC. Support from health care providers and the psychological adjustment of individuals experiencing infertility. J Obstet Gynecol Neonatal Nurs 2004;33:597–603.
   PubMed Web of Science ®Google Scholar
• Cousineau TM, Domar AD. Psychological impact of infertility. Best Pract Res Clin Obstet Gynaecol 2007;21:293–308.
   PubMed Web of Science ®Google Scholar
• Wischmann T. Implications of psychosocial support in infertility – a critical appraisal. J Psychosom Obstet Gynecol 2008;29:83–90.
   PubMed Web of Science ®Google Scholar
• Weissman A, Gotlieb L, Ward S, Greenblatt E, Casper RF. Use of the Internet by infertile couples. Fertil Steril 2000;73:1179–1182.
   PubMed Web of Science ®Google Scholar
• Haagen EC, Tuil W, Hendriks J, de Bruijin RPJ, Braat DDM, Kremer JAM. Current Internet uses and preferences of IVF and ICSI patients. Hum Reprod 2003;18:2073–2078.
   PubMed Web of Science ®Google Scholar
• Huang JYJ, Al-Fozan H, Tan SL, Tulandi T. Internet use by patients seeking infertility treatment. Int J Gynecol Obstet 2003;83:75–76.
   PubMed Web of Science ®Google Scholar
• Kahlor L, Mackert M. Perceptions of infertility information and support sources among female patients who access the Internet. Fertil Steril 2009;91:83–90.
   PubMed Web of Science ®Google Scholar
• Coulson NS, Knibb RC. Coping with food allergy: exploring the role of the online support group. CyberPsychol Behav 2007;10:145–148.
   PubMedGoogle Scholar
• Finfgeld DL. Therapeutic groups online: the good, the bad, and the unknown. Issues Ment Health Nurs 2000;21:241–255.
   PubMedGoogle Scholar
• Tanis M. Health-related on-line forums: what's the big attraction? J Health Commun 2008;13:698–714.
   PubMed Web of Science ®Google Scholar
• Wright KB, Bell SB. Health-related support groups on the internet: linking empirical findings to social support and computer-mediated communication theory. J Health Psychol 2003;8:39–54.
   PubMed Web of Science ®Google Scholar
• Malik SH, Coulson NS. Computer-mediated infertility support groups: an exploratory study of online experiences. Patient Educ Couns 2008;73:105–113.
   PubMed Web of Science ®Google Scholar
• Malik SH, Coulson NS. The male experience of infertility: a thematic analysis of an online infertility support group bulletin board. J Reprod Infant Psychol 2008;22:18–30.
   Google Scholar
• Finn J. An exploration of helping processes in an online self-help group focusing on issues of disability. Health Soc Work 1999;24:220–231.
   PubMed Web of Science ®Google Scholar
• Perron B. Online support for caregivers of people with a mental illness. Psychiatr Rehabil J 2002;26:70–77.
   PubMed 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 MAF.J. Coping with somatic illnesses in online support groups: do the feared disadvantages actually occur? Comput Human Behav 2008;24:309–324.
   Web of Science ®Google Scholar
• Gustafson DH, Hawkins R, McTavish F, Pingree S, Chih Chen W, Volrathongchai K, Stengle W, Stewart JA, Serlin RC. Internet-based interactive support for cancer patients: are integrated systems better? J Commun 2008;58:238–257.
   PubMed Web of Science ®Google Scholar
• Lieberman MA, Winzelberg A, Golant M, Wakahiro M, DiMinno M, Aminoff M, Christine C. Online support groups for Parkinson's patients: a pilot study of effectiveness. Soc Work Healthcare 2005;42:23–38.
   PubMed Web of Science ®Google Scholar
• van Uden-Kraan CF, Drossaert CHC, Taal E, Shaw BR, Seydel ER, van de Laar MAFJ. Empowering processes and outcomes of participation in online support groups for patients with breast cancer, arthritis, or fibromyalgia. Qual Health Res 2008;18:405–417.
   PubMed Web of Science ®Google Scholar
• Finn J, Branch M. Victimization online: the down side of seeking human services for woman on the Internet. CyberPsychol Behav 2000;3:243–254.
   Google Scholar
• Walther JB, Parks MR. Cues filtered out, cues filtered in: computer-mediated communication and relationships. Handbook of interpersonal communication. In: Knapp ML, Daly JA, editors. 3rd edOaks, CA: Sage; 2002. pp. 528–563.
   Google Scholar
• Wright KB. Social support within an on-line cancer community: an assessment of emotional support, perceptions of advantages and disadvantages, and motives for using the community from a communication perspective. J Appl Commun Res 2002;30:195–209.
   Web of Science ®Google Scholar
• Culver JD, Gerr F, Frumkin H. Medical information on the Internet: a study of an electronic bulletin board. J Gen Intern Med 1997;12:466–470.
   PubMed Web of Science ®Google Scholar
• Winzelberg A. The analysis of an electronic support group for individuals with eating disorders. Comput Human Behav 1997;13:393–407.
   Web of Science ®Google Scholar
• Hoch DB, Norris D, Lester JE, Marcus AD. Information exchange in an epilepsy forum on the World Wide Web. Seizure-Eur J Epilepsy 1999;8:30–34.
   PubMedGoogle Scholar
• Esquivel A, Meric-Bernstam F, Bernstam EV. Accuracy and self correction of information received from an internet breast cancer list: content analysis. Br Med J 2006;332:939–942.
   PubMed Web of Science ®Google Scholar
• Epstein YM, Rosenberg HS, Grant TV, Hemenway N. Use of the Internet as the only outlet for talking about infertility. Fertil Steril 2002;78:507–515.
   PubMed Web of Science ®Google Scholar
• Finn J, Lavitt M. Computer-based self-help/mutual aid groups for sexual abuse survivors. Soc Work Groups 1994;17:21–46.
   Google Scholar
• White MH, Dorman SM. Online support for caregivers analysis of an internet alzheimer's mail group. Comput Nurs 2000;18:168–176.
   PubMedGoogle Scholar
• Elo S, Kyngas H. The qualitative content analysis process. J Adv Nurs 2008;62:107–115.
   PubMed Web of Science ®Google Scholar
• Malik S, Coulson NS. What attracts patients experiencing infertility to an online support community? J Fertil Couns 2009;16:23–32.
   Google Scholar
• Hadert A, Rodham K. The invisible reality of arthritis: a qualitative analysis of an online message board. Musculoskel Care 2008;6:181–196.
   PubMedGoogle Scholar
• van Uden-Kraan CF, Drossaert CHC, Taal E, Seydel ER, van de Laar MAF. Participation in online patient support groups endorses patients' empowerment. 2009;Patient Educ Couns 74:61–69.
   PubMed Web of Science ®Google Scholar
• Miall CE. (1985) Women and involuntary childlessness: perceptions of stigma associated with infertility and adoption. PhD dissertation. Toronto Ontario Canada: York University.
   Google Scholar
• Verhaak CM, Smeenk JMJ, Nahuis MJ, Kremer JAM, Braat DDM. Long-term psychological adjustment to IVF/ICSI treatment in women. Hum Reprod 2007;22:305–308.
   PubMed Web of Science ®Google Scholar
• Preece J, Nonnecke B, Andrews D. The top five reasons for lurking: improving community experiences for everyone. Comput Human Behav 2004;20:201–223.
   Web of Science ®Google Scholar
• Huang J, Discepola F, Al-Fozan H, Tulandi T. Quality of fertility clinic websites. Fertil Steril 2005;83:538–544.
   PubMed Web of Science ®Google Scholar
• Marriott JV, Stec P, El-Toukhy T, Khalaf Y, Braude P, Coomarasamy A. Infertility information on the World Wide Web: a cross-sectional survey of quality of infertility information on the internet in the UK. Hum Reprod 2008;23:1520–1525.
   PubMed Web of Science ®Google Scholar
• Okamura K, Bernstein J, Fidler A. Assessing the quality of infertility resources on the World Wide Web: tools to guide clients through the maze of fact and fiction. J Midwifery Womens Health 2002;47:264–268.
   PubMed Web of Science ®Google Scholar
• Kakai H, Maskarinec G, Shumay DM, Tatsumura Y, Tasaki K. Ethnic differences in choices of health information by cancer patients using complementary and alternative medicine: an exploratory study with correspondence analysis. Soc Sci Med 2003;56:851–862.
   PubMed Web of Science ®Google Scholar
• Kreps GL. Disseminating relevant health information to underserved audiences: implications of the Digital Divide Pilot Projects. J Med Libr Assoc 2005;93:68–73.
   PubMed Web of Science ®Google Scholar
• Young K. What makes the Internet addictive: potential explanations for pathological Internet use. Presented at the 105th Annual Conference of the American Psychological Association; 1997 Aug 15, Chicago, IL; 1997.
   Google Scholar
• Cantrell M. Enhancing hope among early female survivors of childhood cancer via the Internet: a feasibility study. Cancer Nurs 2008;31:370–379.
   PubMed Web of Science ®Google Scholar
• Griffiths KM. Systematic review on Internet support groups (ISGs) and depression (2): what is know about depression ISGs? J Med Internet Res 2009;11. Available: http://www.jmir.org/2009/3/e40/ via the Internet. Accessed 2009 Dec 11.
   Google Scholar
• Rothaermel FT, Sugiyama S. Virtual internet communities and commercial success: individual and community-level theory grounded in the atypical case of TimeZone.com. J Manag 2001;27:297–312.
   Google Scholar
• Preece J, Nonnecke B, Andrews D. The top five reasons for lurking: improving community experiences for everyone. Comput Human Behav 2003;20:201–223.
   Google Scholar
• Braithwaite DO, Waldron VR, Finn J. Communication of$146#social support in computer-mediated groups for people with disabilities. Health Commun 1999;11:123–151.
   PubMed Web of Science ®Google Scholar
• Soroka V, Jacovi M, Ur S. We can see you: a study of the community's invisible people through ReachOut. In: Huysman M, Wenger E, Wulf V, editors. Proceedings of International Conference on Communities and Technologies (C&T2003); 2003 Sep 19–21; Amsterdam, The Netherlands: Kluwer Academic Publishers; 2003. pp. 65–79.
   Google Scholar
• De Vaus D. Surveys in social research. 5th ed. London: Taylor & Francis Ltd; 2002.
   Google Scholar
• Mo KH, Malik SH, Coulson NS. Gender differences in computer-mediated communication: a systematic literature review of online health-related support groups. Patient Educ Couns 2009;75:16–24.
   PubMed Web of Science ®Google Scholar
• Malik SH, Coulson NS. Coping with infertility online: an examination of self-help mechanisms in an online infertility support group. Patient Educ Couns in press.
   Google Scholar