Living with HIV/AIDS and use of online support groups
|
If you are the presenter of this abstract (or if you cite this abstract in a talk or on a poster), please show the QR code in your slide or poster (QR code contains this URL). |
Abstract
Introduction: A growing number of individuals are searching for health-related information, advice and support on the Internet [1,2] including that which is related to HIV/AIDS [3-5]. Qualitative studies [4,5] suggest that for individuals living with HIV/AIDS, the Internet has helped individuals to connect with each other, often through participation in online support groups. The present study aimed to explore the association between use of online support groups by individuals living with HIV/AIDS and medical and health status, coping and social support.
Methods: In order to undertake this research, 8 HIV/AIDS-related online support groups were identified from an Internet search engine (i.e. google) and their moderators were contacted and invited to participate in the study. A positive response was received from one website (http://www.aidsmeds.com) where permission to recruit participants was granted. A recruitment message, together with a link to our study website, was emailed to those individuals who had subscribed to their mailing list as well as being posted on their bulletin board. Inclusion criteria of the study were individuals who were aged 18 or above, and had been HIV-positive for at least 1 month. Participants were directed to the online questionnaire, and online consent was sought with recruitment taking place over a 4-week period.
Results: A total of 640 respondents living with HIV/AIDS completed our online questionnaire. The majority were male (82.9%) with a mean age of 45.52 (age range = 19-73 years). Approximately 85% were college educated or higher and approximately half were single. The majority of respondents were from North America (80.3%), followed by Europe (8.8%), Africa (6.9%), Asia (2.5%) and Australia (1.4%). The average time since diagnosis was 9.7 years (range <1 to 18 years) with 62.3% reporting being asymptomatic, 12.7% symptomatic and 25% with AIDS. Using a median split, respondents were classified into one of three groups reflecting the time spent accessing online support groups in the last month. (1) ‘non-users’ comprised those individuals who reported that they had not used such (41%); (2) ‘infrequent users’ were those who reported accessing online support groups up to 4 hours (26.4%) and (3) ‘frequent users’ were those who had accessed online support groups for more than 4 hours (32.3%) in the past month. Our analysis revealed that frequent users were more likely to be female, younger, single, in a more advanced disease stage, and reported spending more time accessing other HIV/AIDS-related websites. In addition, both infrequent and frequent users reported being more recently diagnosed than non-users. After controlling for these factors, our multivariate analysis revealed that frequent online support group users reported greater limitations due to physical functioning, social functioning and poorer general health than non-users. In addition, both frequent and infrequent online users scored higher in planning, active coping, instrumental support and emotional support coping. No significant difference was found for social support.
Discussion: Our results suggest that online support groups may potentially offer some benefits for those living with HIV/AIDS though more longitudinal research is needed. Implications for healthcare and future directions will be considered.
1. Madara EJ. The Mutual-Aid Self-Help Online Revolution. Social Policy 2007; 27(3): 20-26.
2. Powell J, Clarke A. The WWW of the World Wide Web: Who, What, and Why? J Med Internet Res 2002; 4(1): e4.
3. Flicker S, Goldberg E, Read S, Veinot T, McClelland A, Saulnier P, et al. HIV-Positive Youth's Perspectives on the Internet and eHealth. J Med Internet Res 2004; 6(3): e32.
4. Reeves PM. Coping in Cyberspace: The Impact of Internet Use on the Ability of HIV-Positive Individuals to Deal with Their Illness. J Health Commun 2000; 5(1): 47-59.
5. Reeves PM. How Individuals Coping with HIV/AIDS Use The Internet. Health Educ Res 2001; 16(6): 709-719.
Methods: In order to undertake this research, 8 HIV/AIDS-related online support groups were identified from an Internet search engine (i.e. google) and their moderators were contacted and invited to participate in the study. A positive response was received from one website (http://www.aidsmeds.com) where permission to recruit participants was granted. A recruitment message, together with a link to our study website, was emailed to those individuals who had subscribed to their mailing list as well as being posted on their bulletin board. Inclusion criteria of the study were individuals who were aged 18 or above, and had been HIV-positive for at least 1 month. Participants were directed to the online questionnaire, and online consent was sought with recruitment taking place over a 4-week period.
Results: A total of 640 respondents living with HIV/AIDS completed our online questionnaire. The majority were male (82.9%) with a mean age of 45.52 (age range = 19-73 years). Approximately 85% were college educated or higher and approximately half were single. The majority of respondents were from North America (80.3%), followed by Europe (8.8%), Africa (6.9%), Asia (2.5%) and Australia (1.4%). The average time since diagnosis was 9.7 years (range <1 to 18 years) with 62.3% reporting being asymptomatic, 12.7% symptomatic and 25% with AIDS. Using a median split, respondents were classified into one of three groups reflecting the time spent accessing online support groups in the last month. (1) ‘non-users’ comprised those individuals who reported that they had not used such (41%); (2) ‘infrequent users’ were those who reported accessing online support groups up to 4 hours (26.4%) and (3) ‘frequent users’ were those who had accessed online support groups for more than 4 hours (32.3%) in the past month. Our analysis revealed that frequent users were more likely to be female, younger, single, in a more advanced disease stage, and reported spending more time accessing other HIV/AIDS-related websites. In addition, both infrequent and frequent users reported being more recently diagnosed than non-users. After controlling for these factors, our multivariate analysis revealed that frequent online support group users reported greater limitations due to physical functioning, social functioning and poorer general health than non-users. In addition, both frequent and infrequent online users scored higher in planning, active coping, instrumental support and emotional support coping. No significant difference was found for social support.
Discussion: Our results suggest that online support groups may potentially offer some benefits for those living with HIV/AIDS though more longitudinal research is needed. Implications for healthcare and future directions will be considered.
1. Madara EJ. The Mutual-Aid Self-Help Online Revolution. Social Policy 2007; 27(3): 20-26.
2. Powell J, Clarke A. The WWW of the World Wide Web: Who, What, and Why? J Med Internet Res 2002; 4(1): e4.
3. Flicker S, Goldberg E, Read S, Veinot T, McClelland A, Saulnier P, et al. HIV-Positive Youth's Perspectives on the Internet and eHealth. J Med Internet Res 2004; 6(3): e32.
4. Reeves PM. Coping in Cyberspace: The Impact of Internet Use on the Ability of HIV-Positive Individuals to Deal with Their Illness. J Health Commun 2000; 5(1): 47-59.
5. Reeves PM. How Individuals Coping with HIV/AIDS Use The Internet. Health Educ Res 2001; 16(6): 709-719.
Medicine 2.0® is happy to support and promote other conferences and workshops in this area. Contact us to produce, disseminate and promote your conference or workshop under this label and in this event series. In addition, we are always looking for hosts of future World Congresses. Medicine 2.0® is a registered trademark of JMIR Publications Inc., the leading academic ehealth publisher.
This work is licensed under a Creative Commons Attribution 3.0 License.