Coulson, N. Living with HIV/AIDS and use of online support groups 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 Do not miss the next Medicine 2.0 congress on 17/18th Sept 2009 ( www.medicine20congress.com ) Order Audio Recordings (mp3) of Medicine 2.0’08 presentations at http://www.medicine20congress.com/mp3.php

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

Do not miss the next Medicine 2.0 congress on 17/18th Sept 2009 ( www.medicine20congress.com )

Order Audio Recordings (mp3) of Medicine 2.0’08 presentations at http://www.medicine20congress.com/mp3.php

Living with HIV/AIDS and use of online support groups Neil Coulson PhD & Phoenix Mo

Background According to UNAIDS (2007) 33.2 million people worldwide are living with HIV/AIDS Individuals living with HIV/AIDS face a number of complex physical, social, emotional and psychological challenge ` (e.g. Bogart et al., 2000; Bader et al., 2006) 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 One important factor is that of Social Support!!!

According to UNAIDS (2007)

33.2 million people worldwide are living with HIV/AIDS

Individuals living with HIV/AIDS face a number of complex physical, social, emotional and psychological challenge `

(e.g. Bogart et al., 2000; Bader et al., 2006)

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

One important factor is that of Social Support!!!

Social Support Within the HIV/AIDS literature, social support has been associated with: higher immune function greater use of active coping strategies better quality of life better psychological health Potential barriers to social support (face to face) physical limitations, stigma, social rejection (e.g. Schrimshaw et al., 2003; Serovich, Brucker & Kimberly, 2000) New opportunities for social support via online support communities

Within the HIV/AIDS literature, social support has been associated with:

higher immune function

greater use of active coping strategies

better quality of life

better psychological health

Potential barriers to social support (face to face)

physical limitations, stigma, social rejection

(e.g. Schrimshaw et al., 2003; Serovich, Brucker & Kimberly, 2000)

New opportunities for social support via online support communities

Online Support Groups A growing number of studies have described the reasons for, and benefits associated with peer to peer online support groups Asynchronous formats 24 hours/day, 7 days a week, at any convenient time Geographical / temporal / transportation barriers absent Anonymous – which may facilitate self-disclosure and intimacy Socio-demographic factors are not as obvious (e.g. age, social status) Group composition – size and heterogeneity A useful adjunct to traditional forms of care

A growing number of studies have described the reasons for, and benefits associated with peer to peer online support groups

Asynchronous formats

24 hours/day, 7 days a week, at any convenient time

Geographical / temporal / transportation barriers absent

Anonymous – which may facilitate self-disclosure and intimacy

Socio-demographic factors are not as obvious (e.g. age, social status)

Group composition – size and heterogeneity

A useful adjunct to traditional forms of care

Living with HIV/AIDS & Online Support Reeves (2001) Qualitative interview study with 10 HIV/AIDS patients Four themes emerged: Use of the Internet for finding information making social connections advocacy ‘ escaping’ from stress of HIV/AIDS The importance of the Internet in facilitating connections, particularly through accessing online support groups

Reeves (2001)

Qualitative interview study with 10 HIV/AIDS patients

Four themes emerged:

Use of the Internet for finding information

making social connections

advocacy

‘ escaping’ from stress of HIV/AIDS

The importance of the Internet in facilitating connections, particularly through accessing online support groups

Research Aims The extent to which participation in online support groups may benefit individuals living with HIV/AIDS is not clear Notable exceptions: ComputerLink and Comprehensive Health Enhancement System (CHESS) Better social support, improved quality of life, reduced social isolation, better decision making and more active participation in individual health care 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

The extent to which participation in online support groups may benefit individuals living with HIV/AIDS is not clear

Notable exceptions: ComputerLink and Comprehensive Health Enhancement System (CHESS)

Better social support, improved quality of life, reduced social isolation, better decision making and more active participation in individual health care

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

Methods Procedure A total of 8 HIV/AIDS-related websites were contacted and invited to participate in the study. One positive response. Not professionally led or moderated 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 Inclusion criteria: At least 18 years old and HIV positive for at least 1 month A 4 week recruitment period was used

Procedure

A total of 8 HIV/AIDS-related websites were contacted and invited to participate in the study.

One positive response.

Not professionally led or moderated

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

Inclusion criteria:

At least 18 years old and HIV positive for at least 1 month

A 4 week recruitment period was used

Methods Participants A total of 640 respondents completed the online questionnaire Male (82.9%) Mean age = (45.52; range 19 – 73 years) Approximately 85% were college educated or higher Approximately half were single Geographical representation: 80.3% North America, Europe (8.8%), Africa (6.9%), Asia (2.5%) and Australia (1.4%) Average time since diagnosis 9.7 years (range <1 to 18) 62.3% asymptomatic, 12.7% symptomatic, 25% AIDS

Participants

A total of 640 respondents completed the online questionnaire

Male (82.9%)

Mean age = (45.52; range 19 – 73 years)

Approximately 85% were college educated or higher

Approximately half were single

Geographical representation:

80.3% North America, Europe (8.8%), Africa (6.9%), Asia (2.5%) and Australia (1.4%)

Average time since diagnosis 9.7 years (range <1 to 18)

62.3% asymptomatic, 12.7% symptomatic, 25% AIDS

Measures I Medical History Time since diagnosis, disease stage and most recent immunologic status (CD4 cell count) Online Support Group Use 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 Perceived Social Support MOS-SSS – A 19 item measure of four domains of social support (i.e. tangible, affectionate, positive social interaction, emotional/informational)

Medical History

Time since diagnosis, disease stage and most recent immunologic status (CD4 cell count)

Online Support Group Use

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

Perceived Social Support

MOS-SSS – A 19 item measure of four domains of social support (i.e. tangible, affectionate, positive social interaction, emotional/informational)

Measures II Health Status 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) Coping 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

Health Status

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)

Coping

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

Analysis Respondents were classified into one of three groups which represented the estimated time spent accessing online support groups in the past month Group 1: ‘non-users’ (41.4%) Group 2: ‘infrequent users’ (26.4%) Group 3: ‘frequent users’ (32.3%)

Respondents were classified into one of three groups which represented the estimated time spent accessing online support groups in the past month

Group 1: ‘non-users’ (41.4%)

Group 2: ‘infrequent users’ (26.4%)

Group 3: ‘frequent users’ (32.3%)

Demographic/Medical Gender (p<.05) Females were more likely to be frequent/infrequent users than non-users Relationship status (p<.001) Single respondents were more likely to be frequent users than infrequent/non-users Age (p<.05) Frequent/infrequent users were significantly younger than non-users Time since diagnosis (p<.001) Frequent/infrequent users more recently diagnosed Disease stage (p<.05) Asymptomatic more likely to be non-users/infrequent whereas those with AIDS more likely to be frequent than infrequent/non-user

Gender (p<.05)

Females were more likely to be frequent/infrequent users than non-users

Relationship status (p<.001)

Single respondents were more likely to be frequent users than infrequent/non-users

Age (p<.05)

Frequent/infrequent users were significantly younger than non-users

Time since diagnosis (p<.001)

Frequent/infrequent users more recently diagnosed

Disease stage (p<.05)

Asymptomatic more likely to be non-users/infrequent whereas those with AIDS more likely to be frequent than infrequent/non-user

Social Support and Health Status Social Support No significant difference between the groups Health Status Significant difference in use according to health status (p<.01) 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 Frequent users were also more likely to report more pain and poorer general health than non-users Repeated the analysis with covariates (see earlier slides) and the overall significant difference was retained Frequent users reported lower scores on role limitations due to physical problems and social functioning as well as general health

Social Support

No significant difference between the groups

Health Status

Significant difference in use according to health status (p<.01)

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

Frequent users were also more likely to report more pain and poorer general health than non-users

Repeated the analysis with covariates (see earlier slides) and the overall significant difference was retained

Frequent users reported lower scores on role limitations due to physical problems and social functioning as well as general health

Coping Significant difference in coping according to use of online support groups (p<.05) Both frequent/in-frequent report greater use of instrumental support and planning strategies than non-users Frequent users report greater use of active coping and emotional support strategies than infrequent/non-users Infrequent users reported greater use of distraction than non-users Repeated the analysis with covariates (see earlier slides) and the overall significant difference was retained Both frequent/in-frequent report greater use of instrumental support and planning strategies than non-users Frequent users report greater use of active coping and emotional support strategies than infrequent/non-users

Significant difference in coping according to use of online support groups (p<.05)

Both frequent/in-frequent report greater use of instrumental support and planning strategies than non-users

Frequent users report greater use of active coping and emotional support strategies than infrequent/non-users

Infrequent users reported greater use of distraction than non-users

Repeated the analysis with covariates (see earlier slides) and the overall significant difference was retained

Both frequent/in-frequent report greater use of instrumental support and planning strategies than non-users

Frequent users report greater use of active coping and emotional support strategies than infrequent/non-users

Discussion The aim of this study was to consider the physical and psycho-social factors associated with the use of online support groups 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 Despite the cross sectional nature of the study, some interesting findings were revealed which merit consideration in future studies

The aim of this study was to consider the physical and psycho-social factors associated with the use of online support groups

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

Despite the cross sectional nature of the study, some interesting findings were revealed which merit consideration in future studies

Discussion A number of differences between the groups were revealed Demographic/Medical Gender Age Relationship Status – availability of support? Time Since Diagnosis Finding information, especially treatment, is one of the greatest needs for individuals living with HIV/AIDS – especially those recently diagnosed (Huber & Cruz, 2000; Lau et al., 2003) Disease Stage May be related to poor physical health, rejection by friends and family

A number of differences between the groups were revealed

Demographic/Medical

Gender

Age

Relationship Status – availability of support?

Time Since Diagnosis

Finding information, especially treatment, is one of the greatest needs for individuals living with HIV/AIDS – especially those recently diagnosed

(Huber & Cruz, 2000; Lau et al., 2003)

Disease Stage

May be related to poor physical health, rejection by friends and family

Discussion A number of differences between the groups were revealed Health Status Poorer health status among frequent users Social Support No differences revealed Is this due to our TIME measure? A lack of association was also found by Eastin & LaRose (2005) Coping Greater use of some strategies by more frequent users Empowerment?

A number of differences between the groups were revealed

Health Status

Poorer health status among frequent users

Social Support

No differences revealed

Is this due to our TIME measure?

A lack of association was also found by Eastin & LaRose (2005)

Coping

Greater use of some strategies by more frequent users

Empowerment?

Limitations of the Study Cross-sectional nature of the study Recruitment – just one website Is this a sign of things to come? Measurement issues Time spent online What about level of participation, membership life cycle

Cross-sectional nature of the study

Recruitment – just one website

Is this a sign of things to come?

Measurement issues

Time spent online

What about level of participation, membership life cycle

Future Directions (Research) Areas to focus on: Level of participation and the membership life cycle e.g. lurkers versus posters Empowerment processes and outcomes Impact of participation on patient decision making Negative experiences (e.g. horror stories) Impact of success stories (e.g. infertility) Reasons for leaving online support groups

Areas to focus on:

Level of participation and the membership life cycle

e.g. lurkers versus posters

Empowerment processes and outcomes

Impact of participation on patient decision making

Negative experiences (e.g. horror stories)

Impact of success stories (e.g. infertility)

Reasons for leaving online support groups