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The Power of Online Patient Communities for HIV Youth

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Children and Young People Living with HIV/AIDS

Part of the book series: Cross-Cultural Research in Health, Illness and Well-Being ((CCRHIWB))

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Abstract

Youth with HIV (YHIV) face social, physical, and emotional stressors related to their diagnosis. Often, these burdens are reinforced by social stigmatization surrounding HIV. For many YHIV, stigma inhibits the formation of social connections and peer support. But with the growth of online patient communities (OPCs), YHIV are more connected than ever as they provide one another with health information, emotional guidance, and a sense of community that spans geographical barriers. We contend that the social power of OPCs can aid in community support and provide opportunities for story telling and meaning-making that social stigmatization obstructs. While OPCs afford individuals with opportunities to build social networks that provide support and experience outlets for the patient narrative, the digital divide can often prevent against the utilization or research of OPCs for YHIV. This chapter argues for the social benefit of OPCs while also highlighting the gaps in research and implementation that require greater attention.

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References

  • Arnett, J. J., Grusec, J., & Hasting, P. (2007). Socialization in emerging adulthood. In J. Grusec & D. Paul (Eds.), Handbook of socialization: Theory and research (pp. 208–239). New York: Guilford Press.

    Google Scholar 

  • Bacigalupe, G. (2011). Is there a role for social technologies in collaborative healthcare? Families, Systems & Health, 29(1), 1–14.

    Article  Google Scholar 

  • Bacigalupe, G. (2013). Chronic patients and social networking: Research lessons from a virtual community in the basque country. Paper presented at the 141st APHA annual meeting (November 2–November 6, 2013).

    Google Scholar 

  • Bacigalupe, G., Cantrell, K., & Chickerella, R. (2014). Online patient communities emerging clinical and research trends: A systematic review of the research literature. Paper presented at the American Psychological Association annual convention, Washington DC. August 11, 2014.

    Google Scholar 

  • Barak, A., Boniel-Nissim, M., & Suler, J. (2008). Fostering empowerment in online support groups. Computers in Human Behavior, 24(5), 1867–1883.

    Article  Google Scholar 

  • Barker, K. K. (2008). Electronic support groups, patient-consumers, and medicalization: The case of contested illness. Journal of Health and Social Behavior, 49(1), 20–36.

    Article  Google Scholar 

  • 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(4), 509–521.

    Article  Google Scholar 

  • Bartlett, Y. K., & Coulson, N. S. (2011). An investigation into the empowerment effects of using online support groups and how this affects health professional/patient communication. Patient Education and Counseling, 83(1), 113–119.

    Article  Google Scholar 

  • Battles, H. B., & Wiener, L. S. (2002). From adolescence through young adulthood: Psychosocial adjustment associated with long-term survival of HIV. Journal of Adolescent Health, 30(3), 161–168.

    Article  Google Scholar 

  • Bender, J. L., Radhakrishnan, A., Diorio, C., Englesakis, M., & Jadad, A. R. (2011). Can pain be managed through the Internet? A systematic review of randomized controlled trials. Pain, 152(8), 1740–1750. doi:10.1016/j.pain.2011.02.012.

    Article  Google Scholar 

  • Bers, M. U. (2009). New media for new organs: A virtual community for pediatric post-transplant patients. Convergence: The International Journal of Research into New Media Technologies, 15(4), 462–469.

    Google Scholar 

  • Bers, M. U., Gonzalez-Heydrich, J., Raches, D., & DeMaso, D. R. (2001). Zora: A pilot virtual community in the pediatric dialysis unit. Studies in Health Technology and Informatics, 1(1), 800–804.

    Google Scholar 

  • Bers, M., Chau, C., Satoh, K., & Beals, L. (2007). Virtual communities of care: Online peer networks with post-organ transplant youth. In Proceedings of the 8th international conference on computer supported collaborative learning (pp. 78–80). New Brunswick, NJ: International Society of the Learning Sciences.

    Google Scholar 

  • Bletsos, K., Alexias, G., & Tsekeris, C. (2013). Towards a fourth cosmology of doctor-patient relationship: A reflection on the virtual patient community PatientsLikeMe. tripleC: Communication, Capitalism & Critique, 11(1), 136–144.

    Google Scholar 

  • Boyd, D. (2010). Social networks as networked publics: Affordances, dynamics, and implications. In Z. Papacharissi (Ed.), Networked self: Identity, community and culture on social network sites (pp. 39–58). New York: Routledge.

    Google Scholar 

  • Boyle, T., & Cook, J. (2004). Understanding and using technological affordances: A commentary on Conole and Dyke. Research in Learning Technology, 12(3), 295–299.

    Article  Google Scholar 

  • Bull, S. S., Phibbs, S., Watson, S., & McFarlane, M. (2007). What do young adults expect when they go online? Lessons for development of an STD/HIV and pregnancy prevention website. Journal of Medical Systems, 31(2), 149–158.

    Article  Google Scholar 

  • Cantrell, K., Patel, N., Mandrell, B., & Grissom, S. (2013). Pediatric HIV disclosure: A process-oriented framework. AIDS Education and Prevention, 25(4), 302–314.

    Article  Google Scholar 

  • Carver, C. S., & Vargas, S. (2011). Stress, coping, and health. In H. S. Friedman (Ed.), The Oxford handbook of health psychology (pp. 162–188). New York: Oxford University Press.

    Google Scholar 

  • Centers For Disease Control and Prevention. (2012). Estimated HIV incidence among adults and adolescents in the United States, 2007–2010. Basic information about HIV and AIDS.

    Google Scholar 

  • Chorbev, I., Sotirovska, M., & Mihajlov, D. (2011). Virtual communities for diabetes chronic disease healthcare. International Journal of Telemedicine and Applications, 11, 1–8. doi:10.1155/2011/721654.

    Article  Google Scholar 

  • Collins, S. E., & Lewis, D. M. (2013). Social media made easy: Guiding patients to credible online health information and engagement resources. Clinical Diabetes, 31(3), 137–141.

    Article  Google Scholar 

  • Conole, G., & Dyke, M. (2004). What are the affordances of information and communication technologies? Association for Learning Technology Journal, 12(2), 113–124.

    Article  Google Scholar 

  • Coursaris, C. K., & Liu, M. (2009). An analysis of social support exchanges in online HIV/AIDS self-help groups. Computers in Human Behavior, 25(4), 911–918.

    Article  Google Scholar 

  • Dean, R. G. (1995). Stories of AIDS: The use of narrative as an approach to understanding in an AIDS support group. Clinical Social Work Journal, 23(3), 287–304.

    Article  Google Scholar 

  • Dedding, C., van Doorn, R., Winkler, L., & Reis, R. (2011). How will e-health affect patient participation in the clinic? A review of e-health studies and the current evidence for changes in the relationship between medical professionals and patients. Social Science & Medicine, 72(1), 49–53.

    Article  Google Scholar 

  • DeHaan, S., Kuper, L. E., Magee, J. C., Bigelow, L., & Mustanski, B. S. (2013). The interplay between online and offline explorations of identity, relationships, and sex: A mixed-methods study with LGBT youth. Journal of Sex Research, 50(5), 421–434.

    Article  Google Scholar 

  • Donath, J. S. (1998). Identity and deception in the virtual community. In P. Kollock & M. Smith (Eds.), Communities in cyberspace (pp. 29–59). London: Routledge.

    Google Scholar 

  • Donnelly, L. S., Shaw, R. L., & van den Akker, O. B. (2008). eHealth as a challenge to ‘expert’ power: A focus group study of Internet use for health information and management. Journal of the Royal Society of Medicine, 101(10), 501–506.

    Article  Google Scholar 

  • Dumas, T. M., Ellis, W. E., & Wolfe, D. A. (2012). Identity development as a buffer of adolescent risk behaviors in the context of peer group pressure and control. Journal of Adolescence, 35(4), 917–927.

    Article  Google Scholar 

  • Ezzy, D. (2000). Illness narratives: Time, hope and HIV. Social Science & Medicine, 50(5), 605–617.

    Article  Google Scholar 

  • Fox, S., & Purcell, K. (2010). Chronic disease and the Internet. Washington, DC: Pew Internet & American Life Project.

    Google Scholar 

  • Gadow, K. D., Angelidou, K., Chernoff, M., Williams, P. L., Heston, J., Hodge, J., & Nachman, S. (2012). Longitudinal study of emerging mental health concerns in youth perinatally infected with HIV and peer comparisons. Journal of Developmental and Behavioral Pediatrics, 33(6), 456–468.

    Article  Google Scholar 

  • Glasgow, R. E., Kurz, D., King, D., Dickman, J. M., Faber, A. J., Halterman, E., Woolley, T., Toobert, D. J., Strycker, L. A., Estabrooks, P. A., & Osuna, D. (2012). Twelve-month outcomes of an Internet-based diabetes self-management support program. Patient education and counseling, 87(1), 81–92.

    Article  Google Scholar 

  • Greeff, M. (2013). Disclosure and stigma: A cultural perspective. In Stigma, discrimination and living with HIV/AIDS (pp. 71–95). Springer Netherlands.

    Google Scholar 

  • Griffiths, F., Cave, J., Boardman, F., Ren, J., Pawlikowska, T., Ball, R., …, & Cohen, A. (2012). Social networks–the future for health care delivery. Social Science & Medicine, 75(12), 2233–2241.

    Google Scholar 

  • Gunther, M., Foisy, M., Houston, S., Guirguis, L., & Hughes, C. (2014). Treatment beliefs, illness perceptions, and non-adherence to antiretroviral therapy in an ethnically diverse patient population. International Journal of Clinical Pharmacy, 36(1), 105–111.

    Article  Google Scholar 

  • Hazra, R., Siberry, G. K., & Mofenson, L. M. (2010). Growing up with HIV: Children, adolescents, and young adults with perinatally acquired HIV infection. Annual Review of Medicine, 61, 169–185.

    Article  Google Scholar 

  • Heisler, M. (2010). Different models to mobilize peer support to improve diabetes self-management and clinical outcomes: Evidence, logistics, evaluation considerations and needs for future research. Family Practice, 27(suppl 1), i23–i32.

    Article  Google Scholar 

  • Hogwood, J., Campbell, T., & Butler, S. (2013). I wish I could tell you but I can’t: Adolescents with perinatally acquired HIV and their dilemmas around self-disclosure. Clinical Child Psychology and Psychiatry, 18(1), 44–60.

    Article  Google Scholar 

  • Idriss, S. Z., Kvedar, J. C., & Watson, A. J. (2009). The role of online support communities: Benefits of expanded social networks to patients with psoriasis. Archives of Dermatology, 145(1), 46. doi:10.1001/archdermatol.2008.529.

    Article  Google Scholar 

  • Jean-Jacques, M., Persell, S. D., Thompson, J. A., Hasnain-Wynia, R., & Baker, D. W. (2012). Changes in disparities following the implementation of a health information technology-supported quality improvement initiative. Journal of General Internal Medicine, 27(1), 71–77.

    Article  Google Scholar 

  • Kahana, S. Y., Rohan, J., Allison, S., Frazier, T. W., & Drotar, D. (2013). A meta-analysis of adherence to antiretroviral therapy and virologic responses in HIV-infected children, adolescents, and young adults. AIDS and Behavior, 17(1), 41–60.

    Article  Google Scholar 

  • Kalichman, S. C., Weinhardt, L., Benotsch, E., DiFonzo, K., Luke, W., & Austin, J. (2002). Internet access and Internet use for health information among people living with HIV–AIDS. Patient Education and Counseling, 46(2), 109–116.

    Article  Google Scholar 

  • Kalichman, S. C., Benotsch, E. G., Weinhardt, L., Austin, J., Luke, W., & Cherry, C. (2003). Health-related Internet use, coping, social support, and health indicators in people living with HIV/AIDS: Preliminary results from a community survey. Health Psychology, 22(1), 111–116.

    Article  Google Scholar 

  • Kalichman, S. C., Cain, D., Cherry, C., Pope, H., Eaton, L., & Kalichman, M. O. (2005). Internet use among people living with HIV/AIDS: Coping and health-related correlates. AIDS Patient Care & STDs, 19(7), 439–448.

    Article  Google Scholar 

  • Kang, E., Delzell, D. A., Chhabra, M., & Oberdorfer, P. (2014). Factors associated with high rates of antiretroviral medication adherence among youth living with perinatal HIV in Thailand. International Journal of STD & AIDS, 0956462414545524.

    Google Scholar 

  • Kemeny, M. E. (2011). Psychoneuroimmunology. In H. Freidman (Ed.), The Oxford handbook of health psychology (pp. 138–161). New York, NY: Oxford Handbook Online.

    Google Scholar 

  • Korp, P. (2006). Health on the Internet: Implications for health promotion. Health Education Research, 21(1), 78–86.

    Article  Google Scholar 

  • Lam, P. K., Naar-King, S., & Wright, K. (2007). Social support and disclosure as predictors of mental health in HIV-positive youth. AIDS Patient Care and STDs, 21(1), 20–29.

    Article  Google Scholar 

  • Macapagal, K. R., Ringer, J. M., Woller, S. E., & Lysaker, P. H. (2012). Personal narratives, coping, and quality of life in persons living with HIV. The Journal of the Association of Nurses in AIDS Care, 23(4), 361–368.

    Article  Google Scholar 

  • MacDonell, K., Naar-King, S., Huszti, H., & Belzer, M. (2013). Barriers to medication adherence in behaviorally and perinatally infected youth living with HIV. AIDS and Behavior, 17(1), 86–93.

    Article  Google Scholar 

  • Martinez, J., Harper, G., Carleton, R. A., Hosek, S., Bojan, K., Glum, G., & the Adolescent Medicine Trials Network, J. (2012). The impact of stigma on medication adherence among HIV-positive adolescent and young adult females and the moderating effects of coping and satisfaction with health care. AIDS Patient Care and STDs, 26(2), 108–115.

    Article  Google Scholar 

  • Mo, P. K., & Coulson, N. S. (2008). Exploring the communication of social support within virtual communities: A content analysis of messages posted to an online HIV/AIDS support group. CyberPsychology & Behavior, 11(3), 371–374.

    Article  Google Scholar 

  • Mo, P. K., & Coulson, N. (2012). Developing a model for online support group use, empowering processes and psychosocial outcomes for individuals living with HIV/AIDS. Psychology & Health, 27(4), 445–459.

    Article  Google Scholar 

  • Mo, P., & Coulson, N. (2013). Online support group use and psychological health for individuals living with HIV/AIDS. Patient Education and Counseling, 93(3), 426–432.

    Article  Google Scholar 

  • Neal, D. M., & McKenzie, P. J. (2011). Putting the pieces together: endometriosis blogs, cognitive authority, and collaborative information behavior. Journal of the Medical Library Association: JMLA, 99(2), 127.

    Article  Google Scholar 

  • Nguyen, H. Q., Donesky-Cuenco, D., Wolpin, S., Reinke, L. F., Benditt, J. O., Paul, S. M., & Carrieri-Kohlman, V. (2008). Randomized controlled trial of an Internet-based versus face-to-face dyspnea self-management program for patients with chronic obstructive pulmonary disease: Pilot study. Journal of Medical Internet Research, 10(2). Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2483918/.

  • Noy, C. (2004). Performing identity: Touristic narratives of self-change. Text and Performance Quarterly, 24(2), 115–138.

    Article  Google Scholar 

  • Pearlstein, S. L., Mellins, C. A., Dolezal, C., Elkington, K. S., Santamaria, E. K., Leu, C. S., & Abrams, E. J. (2014). Youth in transition: Life skills among perinatally HIV-infected and HIV-exposed adolescents. Journal of Pediatric Psychology, 39(3), 294–305.

    Article  Google Scholar 

  • Penson, R. T., Benson, R. C., Parles, K., Chabner, B. A., & Lynch, T. J. (2002). Virtual connections: Internet health care. The Oncologist, 7(6), 555–568.

    Article  Google Scholar 

  • Peterkin, A. D., & Prettyman, A. A. (2009). Finding a voice: Revisiting the history of therapeutic writing. Medical Humanities, 35(2), 80–88.

    Article  Google Scholar 

  • Peterson, J. L. (2009). “You have to be positive”: Social support processes of an online support group for men living with HIV. Communication Studies, 60(5), 526–541.

    Article  Google Scholar 

  • Rains, S. A., & Young, V. (2009). A meta-analysis of research on formal computer-mediated support groups: Examining group characteristics and health outcomes. Human Communication Research, 35(3), 309–336. doi:10.1111/j.1468-2958.2009.01353.x.

    Article  Google Scholar 

  • Reeves, P. M. (2001). How individuals coping with HIV/AIDS use the Internet. Health Education Research, 16(6), 709–719.

    Article  Google Scholar 

  • Reisner, M. S. L., Mimiaga, M. J., Skeer, M. M., Perkovich, M. B., Johnson, M. C. V., & Safren, S. A. (2009). A review of HIV antiretroviral adherence and intervention studies among HIV–infected youth. Topics in HIV Medicine, 17(1), 14–35.

    Google Scholar 

  • Rice, E., Tulbert, E., Cederbaum, J., Adhikari, A. B., & Milburn, N. G. (2012). Mobilizing homeless youth for HIV prevention: A social network analysis of the acceptability of a face-to-face and online social networking intervention. Health Education Research, 27(2), 226–236.

    Article  Google Scholar 

  • Samoocha, D., Bruinvels, D. J., Elbers, N. A., Anema, J. R., & van der Beek, A. J. (2010). Effectiveness of webbased interventions on patient empowerment: A systematic review and meta-analysis. Journal of medical Internet research, 12(2). doi: 10.2196/jmir.1286.

    Google Scholar 

  • Schubart, J. R., Stuckey, H. L., Ganeshamoorthy, A., & Sciamanna, C. N. (2011). Chronic health conditions and internet behavioral interventions: A review of factors to enhance user engagement. Computers, Informatics, Nursing, 29(2), 81–92. doi:10.1097/NCN.0b013e3182155274.

    Article  Google Scholar 

  • Tassiopoulos, K., Moscicki, A.-B., Mellins, C., Kacanek, D., Malee, K., Allison, S., & Paul, M. (2013). Sexual risk behavior among youth with perinatal HIV infection in the United States: Predictors and implications for intervention development. Clinical Infectious Diseases, 56(2), 283–290.

    Article  Google Scholar 

  • van Uden-Kraan, C. F., Drossaert, C. H., Taal, E., Shaw, B. R., Seydel, E. R., & van de Laar, M. A. (2008). Empowering processes and outcomes of participation in online support groups for patients with breast cancer, arthritis, or fibromyalgia. Qualitative Health Research, 18(3), 405–417.

    Article  Google Scholar 

  • Van Uden-Kraan, C. F., Drossaert, C. H., Taal, E., Seydel, E. R., & van de Laar, M. A. (2009). Participation in online patient support groups endorses patients’ empowerment. Patient Education and Counseling, 74(1), 61–69.

    Article  Google Scholar 

  • Vranda, M. N., & Mothi, S. N. (2013). Psychosocial issues of children infected with HIV/AIDS. Indian Journal of Psychological Medicine, 35(1), 19–22.

    Article  Google Scholar 

  • Wentzer, H. S., & Bygholm, A. (2013). Narratives of empowerment and compliance: Studies of communication in online patient support groups. International Journal of Medical Informatics, 82(12), e386–e394.

    Article  Google Scholar 

  • Wicks, P., Massagli, M., Frost, J., Brownstein, C., Okun, S., Vaughan, T., & Heywood, J. (2010). Sharing health data for better outcomes on PatientsLikeMe. Journal of Medical Internet Research, 12(2), 1–28.

    Article  Google Scholar 

  • Ybarra, M. L., & Bull, S. S. (2007). Current trends in Internet-and cell phone-based HIV prevention and intervention programs. Current HIV/AIDS Reports, 4(4), 201–207.

    Article  Google Scholar 

  • Zanoni, B. C., & Mayer, K. H. (2014). The adolescent and young adult HIV cascade of care in the United States: Exaggerated health disparities. AIDS Patient Care and STDs, 28(3), 128–135.

    Article  Google Scholar 

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

    Article  Google Scholar 

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Authors and Affiliations

  1. College of Education and Human Development, University of Massachusetts Boston, 100 Morrissey Blvd., Boston, MA, 02125, USA

    Gonzalo Bacigalupe & Kathryn Cantrell

  2. Trilogy Behavioral Health, 1210 W. Granville Unit 101, Chicago, IL, 60660, USA

    Rachel Chickerella

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  1. Gonzalo Bacigalupe
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  2. Kathryn Cantrell
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  3. Rachel Chickerella
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Correspondence to Gonzalo Bacigalupe .

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  1. School of Science and Health, Western Sydney University, Penrith, New South Wales, Australia

    Pranee Liamputtong

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Bacigalupe, G., Cantrell, K., Chickerella, R. (2016). The Power of Online Patient Communities for HIV Youth. In: Liamputtong, P. (eds) Children and Young People Living with HIV/AIDS. Cross-Cultural Research in Health, Illness and Well-Being. Springer, Cham. https://doi.org/10.1007/978-3-319-29936-5_18

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