Skip to main content
Erschienen in: AIDS and Behavior 11/2017

21.10.2016 | Original Paper

Social Support in a Virtual Community: Analysis of a Clinic-Affiliated Online Support Group for Persons Living with HIV/AIDS

verfasst von: Tabor E. Flickinger, Claire DeBolt, Ava Lena Waldman, George Reynolds, Wendy F. Cohn, Mary Catherine Beach, Karen Ingersoll, Rebecca Dillingham

Erschienen in: AIDS and Behavior | Ausgabe 11/2017

Einloggen, um Zugang zu erhalten

Abstract

Social support can improve outcomes for people living with HIV (PLWH) and could be provided through online support groups. The Positive Links smartphone app is a multicomponent intervention that allows users to interact in a clinic-affiliated anonymous online support group. We investigated how social support was exchanged in a group of 55 participants over 8 months, using an adaptation of the Social Support Behavior Code. Participant interviews assessed their experiences and perceptions of the app. Of 840 posts analyzed, 115 (14 %) were coded as eliciting social support and 433 (52 %) as providing social support. Messages providing support were predominantly emotional (41 %), followed by network (27 %), esteem (24 %), informational (18 %), and instrumental (2 %) support. Participants perceived connection and support as key benefits of the app. Technical issues and interpersonal barriers limited some participants in fully using the app. Mobile technology offers a useful tool to reach populations with barriers to in-person support and may improve care for PLWH.
Literatur
1.
Zurück zum Zitat Burgoyne R, Renwick R. Social support and quality of life over time among adults living with HIV in the HAART era. Soc Sci Med. 2004;58(7):1353–66.CrossRefPubMed Burgoyne R, Renwick R. Social support and quality of life over time among adults living with HIV in the HAART era. Soc Sci Med. 2004;58(7):1353–66.CrossRefPubMed
2.
Zurück zum Zitat Catz SL, Kelly JA, Bogart LM, Benotsch EG, McAuliffe TL. Patterns, correlates, and barriers to medication adherence among persons prescribed new treatments for HIV disease. Health Psychol. 2000;19(2):124–33.CrossRefPubMed Catz SL, Kelly JA, Bogart LM, Benotsch EG, McAuliffe TL. Patterns, correlates, and barriers to medication adherence among persons prescribed new treatments for HIV disease. Health Psychol. 2000;19(2):124–33.CrossRefPubMed
3.
Zurück zum Zitat Kim SH, McDonald S, Kim S, Foster C, Fidler S. Importance of self-motivation and social support in medication adherence in HIV-infected adolescents in the United Kingdom and Ireland: a multicentre HYPNet study. AIDS Patient Care STDS. 2015;29(6):354–64.CrossRefPubMed Kim SH, McDonald S, Kim S, Foster C, Fidler S. Importance of self-motivation and social support in medication adherence in HIV-infected adolescents in the United Kingdom and Ireland: a multicentre HYPNet study. AIDS Patient Care STDS. 2015;29(6):354–64.CrossRefPubMed
4.
Zurück zum Zitat Leserman J. Role of depression, stress, and trauma in HIV disease progression. Psychosom Med. 2008;70(5):539–45.CrossRefPubMed Leserman J. Role of depression, stress, and trauma in HIV disease progression. Psychosom Med. 2008;70(5):539–45.CrossRefPubMed
5.
Zurück zum Zitat Bekele T, Rourke SB, Tucker R, Greene S, Sobota M, Koornstra J, et al. Direct and indirect effects of perceived social support on health-related quality of life in persons living with HIV/AIDS. AIDS Care. 2013;25(3):337–46.PubMed Bekele T, Rourke SB, Tucker R, Greene S, Sobota M, Koornstra J, et al. Direct and indirect effects of perceived social support on health-related quality of life in persons living with HIV/AIDS. AIDS Care. 2013;25(3):337–46.PubMed
6.
Zurück zum Zitat Mugavero M, Ostermann J, Whetten K, Leserman J, Swartz M, Stangl D, et al. Barriers to antiretroviral adherence: the importance of depression, abuse, and other traumatic events. AIDS Patient Care STDS. 2006;20(6):418–28.CrossRefPubMed Mugavero M, Ostermann J, Whetten K, Leserman J, Swartz M, Stangl D, et al. Barriers to antiretroviral adherence: the importance of depression, abuse, and other traumatic events. AIDS Patient Care STDS. 2006;20(6):418–28.CrossRefPubMed
7.
Zurück zum Zitat Burgoyne RW. Exploring direction of causation between social support and clinical outcome for HIV-positive adults in the context of highly active antiretroviral therapy. AIDS Care. 2005;17(1):111–24.CrossRefPubMed Burgoyne RW. Exploring direction of causation between social support and clinical outcome for HIV-positive adults in the context of highly active antiretroviral therapy. AIDS Care. 2005;17(1):111–24.CrossRefPubMed
8.
Zurück zum Zitat Cutrona CE, Suhr J. Controllability of stressful events and satisfaction with spouse support behaviors. Commun Res. 1992;19:154–74.CrossRef Cutrona CE, Suhr J. Controllability of stressful events and satisfaction with spouse support behaviors. Commun Res. 1992;19:154–74.CrossRef
9.
Zurück zum Zitat Wang YC, Kraut RE, Levine JM. Eliciting and receiving online support: using computer-aided content analysis to examine the dynamics of online social support. J Med Internet Res. 2015;17(4):e99.CrossRefPubMedPubMedCentral Wang YC, Kraut RE, Levine JM. Eliciting and receiving online support: using computer-aided content analysis to examine the dynamics of online social support. J Med Internet Res. 2015;17(4):e99.CrossRefPubMedPubMedCentral
10.
Zurück zum Zitat Hoey LM, Ieropoli SC, White VM, Jefford M. Systematic review of peer-support programs for people with cancer. Patient Educ Couns. 2008;70(3):315–37.CrossRefPubMed Hoey LM, Ieropoli SC, White VM, Jefford M. Systematic review of peer-support programs for people with cancer. Patient Educ Couns. 2008;70(3):315–37.CrossRefPubMed
11.
Zurück zum Zitat Coulson NS, Greenwood N. Families affected by childhood cancer: an analysis of the provision of social support within online support groups. Child Care Health Dev. 2012;38(6):870–7.CrossRefPubMed Coulson NS, Greenwood N. Families affected by childhood cancer: an analysis of the provision of social support within online support groups. Child Care Health Dev. 2012;38(6):870–7.CrossRefPubMed
12.
Zurück zum Zitat Elwell L, Grogan S, Coulson N. Adolescents living with cancer: the role of computer-mediated support groups. J Health Psychol. 2011;16(2):236–48.CrossRefPubMed Elwell L, Grogan S, Coulson N. Adolescents living with cancer: the role of computer-mediated support groups. J Health Psychol. 2011;16(2):236–48.CrossRefPubMed
13.
Zurück zum Zitat Helgeson VS, Cohen S. Social support and adjustment to cancer: reconciling descriptive, correlational, and intervention research. Health Psychol. 1996;15(2):135–48.CrossRefPubMed Helgeson VS, Cohen S. Social support and adjustment to cancer: reconciling descriptive, correlational, and intervention research. Health Psychol. 1996;15(2):135–48.CrossRefPubMed
14.
Zurück zum Zitat Coulson NS. Receiving social support online: an analysis of a computer-mediated support group for individuals living with irritable bowel syndrome. Cyberpsychol Behav. 2005;8(6):580–4.CrossRefPubMed Coulson NS. Receiving social support online: an analysis of a computer-mediated support group for individuals living with irritable bowel syndrome. Cyberpsychol Behav. 2005;8(6):580–4.CrossRefPubMed
15.
Zurück zum Zitat Coulson NS, Buchanan H, Aubeeluck A. Social support in cyberspace: a content analysis of communication within a Huntington’s disease online support group. Patient Educ Couns. 2007;68(2):173–8.CrossRefPubMed Coulson NS, Buchanan H, Aubeeluck A. Social support in cyberspace: a content analysis of communication within a Huntington’s disease online support group. Patient Educ Couns. 2007;68(2):173–8.CrossRefPubMed
16.
Zurück zum Zitat Holbrey S, Coulson NS. A qualitative investigation of the impact of peer to peer online support for women living with polycystic ovary syndrome. BMC Womens Health. 2013;13:51,6874-13-51. Holbrey S, Coulson NS. A qualitative investigation of the impact of peer to peer online support for women living with polycystic ovary syndrome. BMC Womens Health. 2013;13:51,6874-13-51.
17.
Zurück zum Zitat Eysenbach G, Powell J, Englesakis M, Rizo C, Stern A. Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions. BMJ. 2004;328(7449):1166.CrossRefPubMedPubMedCentral Eysenbach G, Powell J, Englesakis M, Rizo C, Stern A. Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions. BMJ. 2004;328(7449):1166.CrossRefPubMedPubMedCentral
18.
Zurück zum Zitat Griffiths KM, Calear AL, Banfield M. Systematic review on internet support groups (ISGs) and depression (1): do ISGs reduce depressive symptoms? J Med Internet Res. 2009;11(3):e40.CrossRefPubMedPubMedCentral Griffiths KM, Calear AL, Banfield M. Systematic review on internet support groups (ISGs) and depression (1): do ISGs reduce depressive symptoms? J Med Internet Res. 2009;11(3):e40.CrossRefPubMedPubMedCentral
19.
Zurück zum Zitat Blackstock OJ, Haughton LJ, Garner RY, Horvath KJ, Norwood C, Cunningham CO. General and health-related Internet use among an urban, community-based sample of HIV-positive women: implications for intervention development. AIDS Care. 2015;27(4):536–44.CrossRefPubMed Blackstock OJ, Haughton LJ, Garner RY, Horvath KJ, Norwood C, Cunningham CO. General and health-related Internet use among an urban, community-based sample of HIV-positive women: implications for intervention development. AIDS Care. 2015;27(4):536–44.CrossRefPubMed
20.
Zurück zum Zitat Horvath KJ, Danilenko GP, Williams ML, Simoni J, Amico KR, Oakes JM, et al. Technology use and reasons to participate in social networking health websites among people living with HIV in the US. AIDS Behav. 2012;16(4):900–10.CrossRefPubMedPubMedCentral Horvath KJ, Danilenko GP, Williams ML, Simoni J, Amico KR, Oakes JM, et al. Technology use and reasons to participate in social networking health websites among people living with HIV in the US. AIDS Behav. 2012;16(4):900–10.CrossRefPubMedPubMedCentral
21.
Zurück zum Zitat Samal L, Saha S, Chander G, Korthuis PT, Sharma RK, Sharp V, et al. Internet health information seeking behavior and antiretroviral adherence in persons living with HIV/AIDS. AIDS Patient Care STDS. 2011;25(7):445–9.CrossRefPubMedPubMedCentral Samal L, Saha S, Chander G, Korthuis PT, Sharma RK, Sharp V, et al. Internet health information seeking behavior and antiretroviral adherence in persons living with HIV/AIDS. AIDS Patient Care STDS. 2011;25(7):445–9.CrossRefPubMedPubMedCentral
22.
Zurück zum Zitat Horvath KJ, Oakes JM, Rosser BR, Danilenko G, Vezina H, Amico KR, et al. Feasibility, acceptability and preliminary efficacy of an online peer-to-peer social support ART adherence intervention. AIDS Behav. 2013;17(6):2031–44.CrossRefPubMedPubMedCentral Horvath KJ, Oakes JM, Rosser BR, Danilenko G, Vezina H, Amico KR, et al. Feasibility, acceptability and preliminary efficacy of an online peer-to-peer social support ART adherence intervention. AIDS Behav. 2013;17(6):2031–44.CrossRefPubMedPubMedCentral
23.
Zurück zum Zitat Muessig KE, Baltierra NB, Pike EC, LeGrand S, Hightow-Weidman LB. Achieving HIV risk reduction through HealthMpowerment.org, a user-driven eHealth intervention for young Black men who have sex with men and transgender women who have sex with men. Digit Cult Educ. 2014;6(3):164–82. Muessig KE, Baltierra NB, Pike EC, LeGrand S, Hightow-Weidman LB. Achieving HIV risk reduction through HealthMpowerment.org, a user-driven eHealth intervention for young Black men who have sex with men and transgender women who have sex with men. Digit Cult Educ. 2014;6(3):164–82.
24.
Zurück zum Zitat Mo PK, Coulson NS. Online support group use and psychological health for individuals living with HIV/AIDS. Patient Educ Couns. 2013;93(3):426–32.CrossRefPubMed Mo PK, Coulson NS. Online support group use and psychological health for individuals living with HIV/AIDS. Patient Educ Couns. 2013;93(3):426–32.CrossRefPubMed
25.
Zurück zum Zitat Mo PK, Coulson NS. Developing a model for online support group use, empowering processes and psychosocial outcomes for individuals living with HIV/AIDS. Psychol Health. 2012;27(4):445–59.CrossRefPubMed Mo PK, Coulson NS. Developing a model for online support group use, empowering processes and psychosocial outcomes for individuals living with HIV/AIDS. Psychol Health. 2012;27(4):445–59.CrossRefPubMed
26.
Zurück zum Zitat Chen L, Shi J. Social support exchanges in a social media community for people living with HIV/AIDS in China. AIDS Care. 2015;27(6):693–6.CrossRefPubMed Chen L, Shi J. Social support exchanges in a social media community for people living with HIV/AIDS in China. AIDS Care. 2015;27(6):693–6.CrossRefPubMed
27.
Zurück zum Zitat Mo PK, Coulson NS. Exploring the communication of social support within virtual communities: a content analysis of messages posted to an online HIV/AIDS support group. Cyberpsychol Behav. 2008;11(3):371–4.CrossRefPubMed Mo PK, Coulson NS. Exploring the communication of social support within virtual communities: a content analysis of messages posted to an online HIV/AIDS support group. Cyberpsychol Behav. 2008;11(3):371–4.CrossRefPubMed
28.
Zurück zum Zitat Pellowski JA, Kalichman SC. Recent advances (2011–2012) in technology-delivered interventions for people living with HIV. Curr HIV/AIDS Rep. 2012;9(4):326–34.CrossRefPubMedPubMedCentral Pellowski JA, Kalichman SC. Recent advances (2011–2012) in technology-delivered interventions for people living with HIV. Curr HIV/AIDS Rep. 2012;9(4):326–34.CrossRefPubMedPubMedCentral
29.
Zurück zum Zitat Casaletto KB, Cattie J, Franklin DR, Moore DJ, Woods SP, Grant I, et al. The wide range achievement test-4 reading subtest “holds” in HIV-infected individuals. J Clin Exp Neuropsychol. 2014;36:992–1001.CrossRefPubMedPubMedCentral Casaletto KB, Cattie J, Franklin DR, Moore DJ, Woods SP, Grant I, et al. The wide range achievement test-4 reading subtest “holds” in HIV-infected individuals. J Clin Exp Neuropsychol. 2014;36:992–1001.CrossRefPubMedPubMedCentral
30.
Zurück zum Zitat Koopman C, Gore-Felton C, Marouf F, Butler LD, Field N, Gill M, et al. Relationships of perceived stress to coping, attachment and social support among HIV-positive persons. AIDS Care. 2000;12:663–72.CrossRefPubMed Koopman C, Gore-Felton C, Marouf F, Butler LD, Field N, Gill M, et al. Relationships of perceived stress to coping, attachment and social support among HIV-positive persons. AIDS Care. 2000;12:663–72.CrossRefPubMed
31.
Zurück zum Zitat Berger BE, Ferrans CE, Lashley FR. Measuring stigma in people with HIV: psychometric assessment of the HIV stigma scale. Res Nurs Health. 2001;24:518–29.CrossRefPubMed Berger BE, Ferrans CE, Lashley FR. Measuring stigma in people with HIV: psychometric assessment of the HIV stigma scale. Res Nurs Health. 2001;24:518–29.CrossRefPubMed
32.
Zurück zum Zitat Vaux A, Phillips J, Holly L, Thomson B, Williams D, Stewart D. The social support appraisals (SS-A) scale: Studies of reliability and validity. Am J Commun Psychol. 1986;14(2):195-196-219. Vaux A, Phillips J, Holly L, Thomson B, Williams D, Stewart D. The social support appraisals (SS-A) scale: Studies of reliability and validity. Am J Commun Psychol. 1986;14(2):195-196-219.
33.
Zurück zum Zitat Gaysynsky A, Romansky-Poulin K, Arpadi S. “My YAP Family”: analysis of a Facebook group for young adults living with HIV. AIDS Behav. 2015;19(6):947–62.CrossRefPubMed Gaysynsky A, Romansky-Poulin K, Arpadi S. “My YAP Family”: analysis of a Facebook group for young adults living with HIV. AIDS Behav. 2015;19(6):947–62.CrossRefPubMed
34.
Zurück zum Zitat Rui JR, Chen Y, Damiano A. Health organizations providing and seeking social support: a Twitter-based content analysis. Cyberpsychol Behav Soc Netw. 2013;16(9):669–73.CrossRefPubMed Rui JR, Chen Y, Damiano A. Health organizations providing and seeking social support: a Twitter-based content analysis. Cyberpsychol Behav Soc Netw. 2013;16(9):669–73.CrossRefPubMed
35.
Zurück zum Zitat Bischof G, Rumpf HJ, Hapke U, Meyer C, John U. Types of natural recovery from alcohol dependence: a cluster analytic approach. Addiction. 2003;98(12):1737–46.CrossRefPubMed Bischof G, Rumpf HJ, Hapke U, Meyer C, John U. Types of natural recovery from alcohol dependence: a cluster analytic approach. Addiction. 2003;98(12):1737–46.CrossRefPubMed
36.
Zurück zum Zitat Mugavero MJ, Pence BW, Whetten K, Leserman J, Swartz M, Stangl D, et al. Predictors of AIDS-related morbidity and mortality in a southern U.S. Cohort. AIDS Patient Care STDS. 2007;21(9):681–90.CrossRefPubMed Mugavero MJ, Pence BW, Whetten K, Leserman J, Swartz M, Stangl D, et al. Predictors of AIDS-related morbidity and mortality in a southern U.S. Cohort. AIDS Patient Care STDS. 2007;21(9):681–90.CrossRefPubMed
37.
Zurück zum Zitat Pence BW, Reif S, Whetten K, Leserman J, Stangl D, Swartz M, et al. Minorities, the poor, and survivors of abuse: HIV-infected patients in the US deep South. South Med J. 2007;100(11):1114–22.CrossRefPubMed Pence BW, Reif S, Whetten K, Leserman J, Stangl D, Swartz M, et al. Minorities, the poor, and survivors of abuse: HIV-infected patients in the US deep South. South Med J. 2007;100(11):1114–22.CrossRefPubMed
38.
Zurück zum Zitat Reif S, Mugavero M, Raper J, Thielman N, Leserman J, Whetten K, et al. Highly stressed: stressful and traumatic experiences among individuals with HIV/AIDS in the Deep South. AIDS Care. 2011;23(2):152–62.CrossRefPubMedPubMedCentral Reif S, Mugavero M, Raper J, Thielman N, Leserman J, Whetten K, et al. Highly stressed: stressful and traumatic experiences among individuals with HIV/AIDS in the Deep South. AIDS Care. 2011;23(2):152–62.CrossRefPubMedPubMedCentral
39.
Zurück zum Zitat Pichon LC, Rossi KR, Ogg SA, Krull LJ, Griffin DY. Social support, stigma and disclosure: examining the relationship with HIV medication adherence among Ryan White Program Clients in the Mid-South USA. Int J Environ Res Public Health. 2015;12(6):7073–84.CrossRefPubMedPubMedCentral Pichon LC, Rossi KR, Ogg SA, Krull LJ, Griffin DY. Social support, stigma and disclosure: examining the relationship with HIV medication adherence among Ryan White Program Clients in the Mid-South USA. Int J Environ Res Public Health. 2015;12(6):7073–84.CrossRefPubMedPubMedCentral
Metadaten
Titel
Social Support in a Virtual Community: Analysis of a Clinic-Affiliated Online Support Group for Persons Living with HIV/AIDS
verfasst von
Tabor E. Flickinger
Claire DeBolt
Ava Lena Waldman
George Reynolds
Wendy F. Cohn
Mary Catherine Beach
Karen Ingersoll
Rebecca Dillingham
Publikationsdatum
21.10.2016
Verlag
Springer US
Erschienen in
AIDS and Behavior / Ausgabe 11/2017
Print ISSN: 1090-7165
Elektronische ISSN: 1573-3254
DOI
https://doi.org/10.1007/s10461-016-1587-3

Weitere Artikel der Ausgabe 11/2017

AIDS and Behavior 11/2017 Zur Ausgabe

Leitlinien kompakt für die Innere Medizin

Mit medbee Pocketcards sicher entscheiden.

Seit 2022 gehört die medbee GmbH zum Springer Medizin Verlag

Update Innere Medizin

Bestellen Sie unseren Fach-Newsletter und bleiben Sie gut informiert.