Living with HIV/AIDS and use of online support groups [4 1530 Aud Coulson]

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Living with HIV/AIDS and use of online support groups [4 1530 Aud Coulson]

  1. 1. Coulson, N. Living with HIV/AIDS and use of online support groups <ul><li>This slideshow, presented at Medicine 2.0’08 , Sept 4/5 th , 2008, in Toronto, was uploaded on behalf of the presenter by the Medicine 2.0 team </li></ul><ul><li>Do not miss the next Medicine 2.0 congress on 17/18th Sept 2009 ( www.medicine20congress.com ) </li></ul><ul><li>Order Audio Recordings (mp3) of Medicine 2.0’08 presentations at http://www.medicine20congress.com/mp3.php </li></ul>
  2. 2. Living with HIV/AIDS and use of online support groups Neil Coulson PhD & Phoenix Mo
  3. 3. Background <ul><li>According to UNAIDS (2007) </li></ul><ul><ul><li>33.2 million people worldwide are living with HIV/AIDS </li></ul></ul><ul><li>Individuals living with HIV/AIDS face a number of complex physical, social, emotional and psychological challenge ` </li></ul><ul><li>(e.g. Bogart et al., 2000; Bader et al., 2006) </li></ul><ul><li>As the number of HIV/AIDS patients living longer increases - growing attention has been placed on factors which underpin and promote better health and quality of life </li></ul><ul><li>One important factor is that of Social Support!!! </li></ul>
  4. 4. Social Support <ul><li>Within the HIV/AIDS literature, social support has been associated with: </li></ul><ul><ul><li>higher immune function </li></ul></ul><ul><ul><li>greater use of active coping strategies </li></ul></ul><ul><ul><li>better quality of life </li></ul></ul><ul><ul><li>better psychological health </li></ul></ul><ul><li>Potential barriers to social support (face to face) </li></ul><ul><ul><li>physical limitations, stigma, social rejection </li></ul></ul><ul><ul><li>(e.g. Schrimshaw et al., 2003; Serovich, Brucker & Kimberly, 2000) </li></ul></ul><ul><li>New opportunities for social support via online support communities </li></ul>
  5. 5. Online Support Groups <ul><li>A growing number of studies have described the reasons for, and benefits associated with peer to peer online support groups </li></ul><ul><ul><li>Asynchronous formats </li></ul></ul><ul><ul><li>24 hours/day, 7 days a week, at any convenient time </li></ul></ul><ul><ul><li>Geographical / temporal / transportation barriers absent </li></ul></ul><ul><ul><li>Anonymous – which may facilitate self-disclosure and intimacy </li></ul></ul><ul><ul><li>Socio-demographic factors are not as obvious (e.g. age, social status) </li></ul></ul><ul><ul><li>Group composition – size and heterogeneity </li></ul></ul><ul><ul><li>A useful adjunct to traditional forms of care </li></ul></ul>
  6. 6. Living with HIV/AIDS & Online Support <ul><li>Reeves (2001) </li></ul><ul><ul><li>Qualitative interview study with 10 HIV/AIDS patients </li></ul></ul><ul><ul><li>Four themes emerged: </li></ul></ul><ul><ul><ul><li>Use of the Internet for finding information </li></ul></ul></ul><ul><ul><ul><li>making social connections </li></ul></ul></ul><ul><ul><ul><li>advocacy </li></ul></ul></ul><ul><ul><ul><li>‘ escaping’ from stress of HIV/AIDS </li></ul></ul></ul><ul><li>The importance of the Internet in facilitating connections, particularly through accessing online support groups </li></ul>
  7. 7. Research Aims <ul><li>The extent to which participation in online support groups may benefit individuals living with HIV/AIDS is not clear </li></ul><ul><li>Notable exceptions: ComputerLink and Comprehensive Health Enhancement System (CHESS) </li></ul><ul><ul><li>Better social support, improved quality of life, reduced social isolation, better decision making and more active participation in individual health care </li></ul></ul><ul><li>The aim of the present study was to explore the use of online support groups and association with medical and health status, coping and social support among individuals living with HIV/AIDS </li></ul>
  8. 8. Methods <ul><li>Procedure </li></ul><ul><ul><li>A total of 8 HIV/AIDS-related websites were contacted and invited to participate in the study. </li></ul></ul><ul><ul><ul><li>One positive response. </li></ul></ul></ul><ul><ul><ul><li>Not professionally led or moderated </li></ul></ul></ul><ul><ul><li>A recruitment message, together with a link to the study website, was emailed to those individuals who had subscribed to the website mailing list. The message was also posted on the bulletin boards hosted by the website </li></ul></ul><ul><ul><li>Inclusion criteria: </li></ul></ul><ul><ul><ul><li>At least 18 years old and HIV positive for at least 1 month </li></ul></ul></ul><ul><ul><li>A 4 week recruitment period was used </li></ul></ul>
  9. 9. Methods <ul><li>Participants </li></ul><ul><ul><li>A total of 640 respondents completed the online questionnaire </li></ul></ul><ul><ul><li>Male (82.9%) </li></ul></ul><ul><ul><li>Mean age = (45.52; range 19 – 73 years) </li></ul></ul><ul><ul><li>Approximately 85% were college educated or higher </li></ul></ul><ul><ul><li>Approximately half were single </li></ul></ul><ul><ul><li>Geographical representation: </li></ul></ul><ul><ul><ul><li>80.3% North America, Europe (8.8%), Africa (6.9%), Asia (2.5%) and Australia (1.4%) </li></ul></ul></ul><ul><ul><li>Average time since diagnosis 9.7 years (range <1 to 18) </li></ul></ul><ul><ul><li>62.3% asymptomatic, 12.7% symptomatic, 25% AIDS </li></ul></ul>
  10. 10. Measures I <ul><li>Medical History </li></ul><ul><ul><li>Time since diagnosis, disease stage and most recent immunologic status (CD4 cell count) </li></ul></ul><ul><li>Online Support Group Use </li></ul><ul><ul><li>Respondents were asked to estimate how many hours in the past month they spent accessing (i) HIV/AIDS related online support groups and (ii) other HIV/AIDS related websites </li></ul></ul><ul><li>Perceived Social Support </li></ul><ul><ul><li>MOS-SSS – A 19 item measure of four domains of social support (i.e. tangible, affectionate, positive social interaction, emotional/informational) </li></ul></ul>
  11. 11. Measures II <ul><li>Health Status </li></ul><ul><ul><li>SF36 - A 36 item questionnaire which examines 8 dimensions of health status (i.e. physical functioning, role limitations due to physical problems, role limitations due to emotional problems, energy, social functioning, pain, emotional well-being and general health) </li></ul></ul><ul><li>Coping </li></ul><ul><ul><li>Brief Cope – A 28 item scale that measures 14 types of cognitive or behavioural coping processes (i.e. positive reframing, religion, substance abuse, venting, humor, instrumental support, acceptance, active coping, behavioural disengagement, self-blame, denial, self-distraction, emotional support and planning </li></ul></ul>
  12. 12. Analysis <ul><li>Respondents were classified into one of three groups which represented the estimated time spent accessing online support groups in the past month </li></ul><ul><ul><li>Group 1: ‘non-users’ (41.4%) </li></ul></ul><ul><ul><li>Group 2: ‘infrequent users’ (26.4%) </li></ul></ul><ul><ul><li>Group 3: ‘frequent users’ (32.3%) </li></ul></ul>
  13. 13. Demographic/Medical <ul><li>Gender (p<.05) </li></ul><ul><ul><li>Females were more likely to be frequent/infrequent users than non-users </li></ul></ul><ul><li>Relationship status (p<.001) </li></ul><ul><ul><li>Single respondents were more likely to be frequent users than infrequent/non-users </li></ul></ul><ul><li>Age (p<.05) </li></ul><ul><ul><li>Frequent/infrequent users were significantly younger than non-users </li></ul></ul><ul><li>Time since diagnosis (p<.001) </li></ul><ul><ul><li>Frequent/infrequent users more recently diagnosed </li></ul></ul><ul><li>Disease stage (p<.05) </li></ul><ul><ul><li>Asymptomatic more likely to be non-users/infrequent whereas those with AIDS more likely to be frequent than infrequent/non-user </li></ul></ul>
  14. 14. Social Support and Health Status <ul><li>Social Support </li></ul><ul><ul><li>No significant difference between the groups </li></ul></ul><ul><li>Health Status </li></ul><ul><ul><li>Significant difference in use according to health status (p<.01) </li></ul></ul><ul><ul><li>Frequent users reported significantly lower scores for physical functioning , role limitations due to physical problems and social functioning compared with infrequent users or non-users </li></ul></ul><ul><ul><li>Frequent users were also more likely to report more pain and poorer general health than non-users </li></ul></ul><ul><li>Repeated the analysis with covariates (see earlier slides) and the overall significant difference was retained </li></ul><ul><ul><li>Frequent users reported lower scores on role limitations due to physical problems and social functioning as well as general health </li></ul></ul>
  15. 15. Coping <ul><li>Significant difference in coping according to use of online support groups (p<.05) </li></ul><ul><ul><li>Both frequent/in-frequent report greater use of instrumental support and planning strategies than non-users </li></ul></ul><ul><ul><li>Frequent users report greater use of active coping and emotional support strategies than infrequent/non-users </li></ul></ul><ul><ul><li>Infrequent users reported greater use of distraction than non-users </li></ul></ul><ul><li>Repeated the analysis with covariates (see earlier slides) and the overall significant difference was retained </li></ul><ul><ul><li>Both frequent/in-frequent report greater use of instrumental support and planning strategies than non-users </li></ul></ul><ul><ul><li>Frequent users report greater use of active coping and emotional support strategies than infrequent/non-users </li></ul></ul>
  16. 16. Discussion <ul><li>The aim of this study was to consider the physical and psycho-social factors associated with the use of online support groups </li></ul><ul><ul><li>In particular, our study sought to explore the medical and heath characteristics of online support group participants and whether the frequency of accessing groups was related to coping and social support </li></ul></ul><ul><ul><li>Despite the cross sectional nature of the study, some interesting findings were revealed which merit consideration in future studies </li></ul></ul>
  17. 17. Discussion <ul><li>A number of differences between the groups were revealed </li></ul><ul><ul><li>Demographic/Medical </li></ul></ul><ul><ul><ul><li>Gender </li></ul></ul></ul><ul><ul><ul><li>Age </li></ul></ul></ul><ul><ul><ul><li>Relationship Status – availability of support? </li></ul></ul></ul><ul><ul><ul><li>Time Since Diagnosis </li></ul></ul></ul><ul><ul><ul><ul><li>Finding information, especially treatment, is one of the greatest needs for individuals living with HIV/AIDS – especially those recently diagnosed </li></ul></ul></ul></ul><ul><ul><ul><ul><li>(Huber & Cruz, 2000; Lau et al., 2003) </li></ul></ul></ul></ul><ul><ul><ul><li>Disease Stage </li></ul></ul></ul><ul><ul><ul><ul><li>May be related to poor physical health, rejection by friends and family </li></ul></ul></ul></ul>
  18. 18. Discussion <ul><li>A number of differences between the groups were revealed </li></ul><ul><ul><li>Health Status </li></ul></ul><ul><ul><ul><li>Poorer health status among frequent users </li></ul></ul></ul><ul><ul><li>Social Support </li></ul></ul><ul><ul><ul><li>No differences revealed </li></ul></ul></ul><ul><ul><ul><li>Is this due to our TIME measure? </li></ul></ul></ul><ul><ul><ul><li>A lack of association was also found by Eastin & LaRose (2005) </li></ul></ul></ul><ul><ul><li>Coping </li></ul></ul><ul><ul><ul><li>Greater use of some strategies by more frequent users </li></ul></ul></ul><ul><ul><ul><li>Empowerment? </li></ul></ul></ul>
  19. 19. Limitations of the Study <ul><li>Cross-sectional nature of the study </li></ul><ul><li>Recruitment – just one website </li></ul><ul><ul><li>Is this a sign of things to come? </li></ul></ul><ul><li>Measurement issues </li></ul><ul><ul><li>Time spent online </li></ul></ul><ul><ul><li>What about level of participation, membership life cycle </li></ul></ul>
  20. 20. Future Directions (Research) <ul><li>Areas to focus on: </li></ul><ul><ul><li>Level of participation and the membership life cycle </li></ul></ul><ul><ul><ul><li>e.g. lurkers versus posters </li></ul></ul></ul><ul><ul><li>Empowerment processes and outcomes </li></ul></ul><ul><ul><li>Impact of participation on patient decision making </li></ul></ul><ul><ul><li>Negative experiences (e.g. horror stories) </li></ul></ul><ul><ul><ul><li>Impact of success stories (e.g. infertility) </li></ul></ul></ul><ul><ul><li>Reasons for leaving online support groups </li></ul></ul>

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