CSIRO PUBLISHING
Sexual Health, 2015, 12, 308–314 http://dx.doi.org/10.1071/SH15064
Online self-management for gay men living with HIV: a pilot study Tanya Millard A,H, Karalyn McDonald A,B,C, Sonya Girdler D, Sean Slavin E and Julian Elliot A,F,G A
Department of Infectious Diseases, Monash University, Level 5, Alfred Centre, 99 Commercial Road, Melbourne, Vic. 3004, Australia. B Jean Hailes Research Unit, Monash University, Melbourne, Vic. 3004, Australia. C Australian Research Centre in Sex, Health and Society, La Trobe University, Melbourne, Vic. 3000, Australia. D School of Occupational Therapy and Social Work, Centre for Research into Disability and Society, Curtin University, Perth, WA 6845, Australia. E Centre for Social Research in Health, University of New South Wales, Sydney, NSW 2052, Australia. F Infectious Diseases Unit, Alfred Hospital, Level 2 Burnet Tower, 85 Commercial Road, Melbourne, Vic. 3004, Australia. G Centre for Population Health, Burnet Institute, Melbourne, Vic., 3004, Australia. H Corresponding author. Email: [email protected]
Abstract. Background: The aim of this pilot study was to assess the feasibility, acceptability and effectiveness of Positive Outlook, an online self-management program for gay men living with HIV in Australia. Methods: Two pilot studies were conducted, a small feasibility study (Pilot 1) followed by a pilot randomised controlled study (Pilot 2). Pilot 1 employed a pre and post-test design and included 10 men. Within- and between-group differences were evaluated in Pilot 2, which involved 37 participants randomly assigned to receive the Positive Outlook Program or usual care. We report on feasibility, acceptability and a range of preliminary efficacy outcomes, including health education impact, HIV-related quality of life and HIV-related self-efficacy. Results: The program was well accepted by participants with some decline in engagement with the discussion boards witnessed over the duration of the program. Overall, intervention group participants demonstrated improvements in the majority of efficacy outcome measures, including HIV-related quality of life, self-efficacy, self-management skills, social support and adjustment to HIV. Conclusion: These pilot studies demonstrated that an online program to facilitate self-management among gay men living with HIV is both feasible and well accepted by participants who persisted with the program per protocol. Preliminary data suggest that the Positive Outlook program has the potential to enhance participants’ quality of life, self-efficacy and health related outcomes, and demonstrates the need for further study with a larger sample. Additional keywords: internet, Positive Outlook program, quality of life, self-efficacy, web-based. Received 1 November 2014, accepted 10 April 2015, published online 22 June 2015
Background Psychosocial aspects associated with an HIV diagnosis have been identified as substantially impacting health, wellbeing and quality of life.1,2 In a cross-sectional survey of people with HIV (PWHIV) in Australia, 40% of respondents reported ever experiencing depression, a rate almost double that of the general population.1,3,4 Depression among PWHIV has been linked with social isolation and withdrawal, and negatively impacts general health, wellbeing and health related quality of life.3,5,6 Considerable stress is experienced surrounding disclosure of HIV-positive status and perceived stigma has been identified as a constant barrier to disclosure.7,8 This is concerning considering that disclosure provides a means for social support and has found to be protective against depression Journal compilation CSIRO 2015
and participation in high-risk sexual behaviours.8,9 Despite existing services and supports, psychosocial issues continue to have a strong negative impact on the lives of PWHIV.2 Barriers to existing face-to-face programs include location and transport, lack of time, stigma and the desire for anonymity, and lack of engagement with the community organisations that deliver these programs.10,11 Improved access to the internet has increased the role that online delivery plays in health programs,12 particularly for populations that find it difficult to engage with existing services.13 Online health programs provide consumers with information and support,12 opportunities to learn self-help strategies,14 obtain peer support15 and additional support from health professionals.16 Online delivery offers several advantages www.publish.csiro.au/journals/sh
Online self-management for gay men living with HIV
over traditional face-to-face programs, including convenience, availability, anonymity and low scale-up costs.12,14 Online delivery is increasingly being employed in HIV programming, however, there is little empirical evidence of the effect of these programs on the health and wellbeing of PWHIV.17 The Positive Outlook program was developed to address the gaps within existing support programs for PWHIV, using online delivery and the anonymity and convenience this provides. This paper reports on the findings of the pilot phase of Positive Outlook. Two pilot studies were conducted, an initial feasibility study (Pilot 1) followed by a randomised controlled study (Pilot 2). Methods Intervention The Positive Outlook program is based on self-efficacy theory18 and utilises a self-management approach19 to enhance participants’ skills, confidence and ability to manage the psychosocial aspects of HIV in their daily lives. The program consists of a series of information modules, goal-setting and action-planning activities and discussion boards, and is delivered as a peer-facilitated closed group. Participants are encouraged to access the program via the password-protected Positive Outlook website for ~90 min per week for 7 weeks. The theoretical framework and full intervention description have been published previously.20 Control Control group participants in Pilot 2 continued with their ‘usual care’, including primary health and community based services and supports without any other additional intervention. Study design We conducted a single-arm pilot feasibility study followed by a pilot randomised controlled trial (RCT). Both studies aimed to determine feasibility and acceptability of the program and included a qualitative process assessment and a quantitative assessment of preliminary efficacy. Participants Inclusion criteria were a positive HIV diagnosis, male sex, age over 18 years, adequate English skills, residing in Australia, and access to a computer and the internet. For Pilot 1, participants were recruited through the Western Australian AIDS Council. For Pilot 2, participants were recruited nationally in response to web- and print-based advertisements delivered via Facebook, community organisations, the Star Observer and Melbourne Community Voice newspapers, hospitals and GP clinics. People registering interest in the study were sent electronic consent forms, baseline questionnaires and registration forms, they were then allocated into the ‘usual care’ control group or the intervention group using a computer-generated list of random numbers. Qualitative assessment Interviews with participants at completion of the program were used for process evaluation. A semi-structured interview explored participants’ experiences using the program, ease of website navigation and satisfaction with group process and website
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content. The questions also explored suggestions for change and improvement. Interviews were conducted via phone by a member of the research team (KM) and were digitally recorded. Interviews were then transcribed verbatim and thematically analysed.21 Participants in Pilot 2 were also sent a feedback questionnaire exploring their experiences using the program, most useful aspects and suggestions for change. They were also asked to rate the usefulness of the discussion boards, activities and content. Pseudonyms are used in the presentation of participants’ quotes throughout this manuscript. Quantitative assessment Measures Outcome measures were administered at baseline and post intervention. Primary outcome measures were: HIV-specific quality of life as measured by the Patient Reported Outcomes Quality of Life – HIV (PROQOL-HIV);22 outcomes of health education and self-management skills as measured by the Health Education Impact Questionnaire (HeiQ);23 and HIVspecific self-efficacy measured by a scale specifically developed for this study (Positive Outlook Self Efficacy Scale (POSE). This scale was developed to address a significant gap in the ability of existing standardised questionnaires to evaluate the specific outcomes targeted by this intervention; in particular, participants confidence in their skills and abilities for disclosure of HIV status and management of HIV within intimate relationships. Secondary outcome measures included the Depression, Anxiety, Stress Scale (DASS-21);24 social support as measured by the Duke Social Support Index (DSSI);25 self-efficacy as measured by the Generalised Self-Efficacy Scale (GSE);26 and domain-specific adjustment as measured by the Mental Adjustment to HIV Scale (MAH).27 Outcome measures are described in full detail in the previously described protocol.20 All scales have been validated for use in people in Australia and have either been specifically developed for PWHIV or validated for use in PWHIV; or are widely used instruments for people with chronic conditions and appropriate for use in this population given the absence of outcome measures specifically developed/ validated for PWHIV. Data analysis To evaluate preliminary effectiveness of the program, t-tests were conducted on pre-test and post-test data. Within-group comparisons were made using paired t-tests and between-group comparisons were made using independent samples t-tests. Statistical significance was set at P < 0.05. As these studies were not powered to detect statistical significance, results regarding efficacy need to be interpreted with caution. We aim to determine preliminary efficacy only. Data analysis was conducted using SPSS v20 (IBM, Armonk, NY, USA). Results Pilot 1 Ten men were enrolled in Pilot 1. The average age was 47 years, mean time since HIV diagnosis was 13 years, nine participants reported taking antiretroviral therapy and the majority were
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unemployed (78%). One participant withdrew in Week 5 due to personal issues.
facilitators and participants were anonymous was identified as a priority.
Usage, satisfaction and feedback
Preliminary efficacy evaluation
All participants posted at least once to the discussion boards. There was a decline in the use of the discussion boards over the 7 weeks, from seven participants posting in Week 1 to a single participant in Week 7. Six men were interviewed at completion of the program. Despite limited posts to the discussion boards, participants revealed that they were still engaging with the content and reading others’ posts. Participants reported that the website was relatively easy to navigate and that they were generally satisfied with the program content. For example, when asked what he got out of participating in the program, Steve responded: ‘Well a general idea of how other people are coping and what they are doing and their survival techniques. Yeah it gives you a bit of an idea about what to say and how to do it’. Ensuring both
Overall, improvements in the majority of outcome measures were demonstrated between pre-test and post-test follow-up. Significant improvements were achieved on the PROQOL-HIV subscales of physical health and symptoms (P = 0.04) and body change (P = 0.04); and the POSE for relationships (P = 0.04); emotions (P = 0.01) and total score (P = 0.04). A significant reduction in depression symptomology as measured by the DASS21 was also achieved between the two time points (P = 0.02) (Table 1). Changes between Pilots 1 and 2 To address the engagement issues identified during Pilot 1, we increased the target group size to 18 participants. In doing
Table 1. Pilot 1 preliminary efficacy DASS-21, Depression, Anxiety, Stress Scale; DSSI, Duke Social Support Index; GSE, Generalised Self-Efficacy Scale; HeiQ, Health Education Impact Questionnaire; MAH, Mental Adjustment to HIV Scale; POSE, Positive Outlook Self Efficacy Scale; PROQOL-HIV, Patient Reported Outcomes Quality of Life – HIV. *Denotes significance at P < 0.05 Outcome Primary outcome measures PROQOL-HIV Physical health and symptoms Body change Social relationships Intimate relationships Stigma Emotional distress Health concerns Treatment impact HeiQ Health-directed activity Positive engagement in life Emotional distress Self-monitoring and insight Constructive attitudes and approaches Skill and technique acquisition Social integration and support Health service navigation POSE Knowledge Communication Relationships Social Emotions Total score Secondary outcome measures DASS Depression Anxiety Stress DSSI Social participation Social satisfaction GSE (sum) MAH (sum)
Baseline mean (s.d.)
Follow-up mean (s.d.)
P-value
71.8 70.8 80.6 69.8 77.8 70.1 76.4 81.9
(23.6) (22.1) (33.1) (41.5) (28.5) (32.6) (22.0) (15.9)
77.7 82.8 88.9 66.7 75.0 86.1 77.3 77.5
(29.2) (20.5) (21.1) (40.6) (31.3) (19.7) (17.0) (18.6)
0.042* 0.042* 0.141 0.216 0.414 0.066 1.000 0.343
2.8 2.8 3.2 3.3 3.1 3.0 2.7 3.2
(0.8) (0.8) (0.7) (0.4) (0.8) (0.7) (0.9) (0.9)
2.8 2.9 3.2 3.1 3.2 3.2 3.0 3.3
(0.3) (0.7) (0.5) (0.5) (0.7) (0.6) (0.7) (0.8)
1.000 0.226 0.953 0.591 0.516 0.175 0.089 0.458
(3.3) (9.1) (11.3) (7.2) (9.5) (36.8)
0.778 0.574 0.038* 0.258 0.011* 0.038*
17.4 23.2 36.4 17.0 24.2 118.3
(3.2) (8.1) (11.9) (8.9) (10.4) (39.3)
10.9 (11.2) 3.4 (4.7) 8.4 (11.4) 8.0 17.0 28.8 95
(2.3) (3.7) (10.2) (9.6)
17.7 25.9 41.2 18.9 28.0 131.6
5.8 (9.6) 5.6 (8.6) 7.6 (8.0) 8.3 16.8 29.2 93.4
(2.12) (3.8) (10.4) (9.4)
0.017* 0.713 0.458 0.257 0.891 0.953 0.553
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this, we aimed to achieve a critical mass of interaction and increase the number of discussion board posts. An extra facilitator was recruited to support this. We also modified
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procedures so that facilitators remained anonymous to group participants and vice versa. Pilot 2 Seventeen participants were allocated to the intervention group and 18 to the control group. Participant disposition is outlined in Fig. 1. Groups were well balanced with regard to baseline characteristics (Table 2).
n = 57 registered interest n = 44 provided consent n = 35 completed baseline questionnaire and registration form
Usage, satisfaction and feedback Randomisation (n = 35)
n = 17 allocated to Positive Outlook intervention group n = 2 withdrew from the program for personal reasons
n = 18 allocated to ‘usual care’ control group
n = 9 completed post intervention follow-up assessment
n = 12 completed follow-up assessment
All but four intervention group participants posted to the discussion board at least once. Again, a steep decline in participant posts to the discussion boards occurred over the duration of the program, from 12 participants in Week 1, to 3 participants in Week 7. Interviews were conducted with four participants following the program and seven participants completed the feedback questionnaire. Despite the decline in discussion board posts, post-test interviews and follow-up questionnaires indicated that the intervention was very well accepted. Respondents consistently described the value of the program in providing the opportunity to share experiences and gain insight into how other people are managing in daily life. ‘Well I think it raised a lot of issues that we all got to discuss amongst ourselves. I found it interesting sharing stories with other people and I found it interesting reading what others thought about things.’
Fig. 1. Participant disposition (Pilot 2).
Table 2. Pilot 2 participant baseline characteristics ARV, antiretroviral Sociodemographic characteristics
Intervention
Age, mean (s.d.) Marital status Single Partnered Education Secondary school Tertiary Employment status Full time Part-time/casual Unemployed/retired Income (weekly) < $600 > $600 Country of birth Australia Other Living situation Alone With partner With others Year diagnosed HIV +, mean (s.d. years) Taking ARV medications Yes No Year began taking ARV medications, mean (s.d. years)
40.29 (11.56)
Control 42.72 (8.03)
Total 41.54 (9.83)
12 5
12 6
24 11
6 11
3 15
9 26
10 3 4
11 2 5
21 5 9
6 11
5 13
20 15
14 3
11 7
25 10
8 4 5 2002.06 (10.04)
4 5 9 2002.39 (8.27)
12 9 14 2002.23 (9.04)
13 4 2004.08 (9.24)
16 2 2006.15 (5.64)
29 6 2005.12 (7.58)
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Almost all of the participants who completed the survey (6/7) rated the discussion boards as the most useful aspect of the program, however, in the interviews, participants expressed the desire for a higher level of engagement with the boards. Reasons for limited posts included time limitations and feeling discouraged by the sporadic responses to posts, highlighted here by Joel: ‘Maybe coax more people into posting on the discussion board a bit more. I regret not posting more. I think it will take a bit of time to build. It looked like a lot of people dropped out and I was the only one who was still posting’. The key benefits described by participants were the anonymity enabled by the online nature of the program and the convenience of being able to access the program at any time. Jack said, ‘I guess there is the anonymity of doing it online. I guess it’s just the time factor, finding time to go online. Every
time a new discussion would open up, you would go and have a look at it and see if you could add anything relevant to what was being talked about’. The online mode of delivery was considered an advantage over face-to-face groups as it allowed for open and honest discussions about sensitive topics. Scott felt he could talk about anything: ‘Because it is online I think that people can feel that freedom there that they are not going to be judged or that it will affect them that much you know. . .it’s just having that forum where you can say what you want really’. Preliminary efficacy evaluation Participants in the intervention group demonstrated improvements in the majority of outcome measures.
Table 3. Pilot 2 preliminary efficacy Between refers to differences between intervention and control group, within is within intervention group only. PHS, physical health and symptoms; BC, body change; SR, social relationships; IR, intimate relationships; ST, stigma; ED, emotional distress; HC, health concerns; TI, treatment impact; HAD, health directed activity; PAE, positive and active engagement in life; ED, emotional distress; SM, self monitoring and insight; CAA, constructive attitudes and approaches; STA, skill and technique acquisition; SIS, social integration and support; HSN, health service navigation. K, knowledge; C, communication; R, relationships; S, social; E, emotions; TS, total score; DEP, depression; ANX, anxiety; STR, stress; PT, participation; SAT, satisfaction DASS-21, Depression, Anxiety, Stress Scale; DSSI, Duke Social Support Index; GSE, Generalised Self-Efficacy Scale; HeiQ, Health Education Impact Questionnaire; MAH, Mental Adjustment to HIV Scale; POSE, Positive Outlook Self Efficacy Scale; PROQOL-HIV, Patient Reported Outcomes Quality of Life – HIV. *Denotes P < 0.05
Outcome PROQOL-HIV PHS BC SR IR ST ED HC TI HeiQ HDA PAE ED SMI CAA STA SIS HSN POSE K C R S E TS DASS DEP ANX STR DSSI PT SAT GSE MAH
Intervention group mean (s.d.) Baseline Follow-up
P-value (within)
Control group mean (s.d.) Baseline Follow-up
P-value (within)
P-value (between)
65.4 64.8 75.0 54.2 50.0 64.2 59.8 83.1
(22.2) (19.2) (28.9) (37.3) (33.9) (26.6) (31.7) (13.9)
80.6 78.5 88.3 75.5 75.0 82.1 77.7 86.3
(26.3) (18.5) (27.9) (36.3) (32.3) (27.6) (30.1) (12.6)
0.005* 0.007* 0.016* 0.013* 0.008* 0.010* 0.008* 0.130
65.6 64.9 70.8 56.5 61.7 62.5 60.2 76.7
(18.7) (20.8) (22.0) (26.0) (30.0) (22.8) (22.3) (17.7)
85.4 80.8 80.8 74.4 74.2 80.1 77.3 86.0
(22.3) (23.4) (31.3) (31.3) (32.2) (31.7) (39.0) (15.7)
0.001* 0.055 0.125 0.063 0.153 0.019* 0.080 0.056
0.583 0.677 0.551 0.966 0.890 0.853 0.975 0.986
2.8 3.0 2.7 3.1 3.0 2.7 2.4 3.2
(0.6) (0.6) (0.7) (0.3) (0.7) (0.4) (0.7) (0.7)
3.0 3.0 2.7 3.1 3.1 2.8 2.5 3.1
(0.7) (0.5) (0.7) (0.3) (0.5) (0.4) (0.7) (0.70
0.166 0.203 0.747 0.632 0.442 0.400 0.421 0.116
2.8 2.9 2.7 3.1 3.0 2.8 2.7 3.1
(0.6) (0.7) (0.7) (0.4) (0.5) (0.6) (0.6) (0.5)
2.9 3.0 2.9 3.1 3.1 3.0 2.8 3.2
(0.7) (0.7) (0.7) (0.4) (0.6) (0.5) (0.8) (0.6)
0.074 0.149 0.108 0.712 0.049 0.028* 0.597 0.190
0.960 0.748 0.503 0.915 0.835 0.256 0.315 0.601
(5.3) (9.9) (13.0) (7.0) (9.6) (38.8)
0.216 0.053 0.080 0.875 0.927 0.076
15.7 23.2 36.2 17.8 24.4 117.3
(4.2) (12.1) (15.3) (8.4) (10.9) (48.5)
0.781 1.000 0.658 0.615 0.760 0.810
0.953 0.948 0.664 0.662 0.736 0.775
14.8 20.8 32.5 17.3 23.6 109.0
(5.1) (9.3) (14.2) (7.1) (9.1) (38.1)
15.3 23.4 35.0 17.2 23.6 114.6
(3.8) (11.4) (13.4) (5.7) (8.8) (38.6)
15.4 23.2 37.1 18.4 24.9 118.9
12.9 (12.9) 8.8 (11.0) 14.9 (10.9)
14.8 (13.0) 9.3 (11.5) 15.8 (11.8)
0.019* 0.509 0.361
15.0 (11.8) 10.7 (8.5) 16.0 (10.9)
12.2 (12.2) 8.5 (8.5) 13.1 (10.8)
0.137 0.023* 0.132
0.617 0.824 0.508
8.6 14.6 29.7 94.7
9.1 14.4 28.2 95.5
0.088 0.740 0.010* 0.499
9.0 16.5 30.0 96.6
8.8 15.9 30.7 95.0
0.825 0.167 0.406 0.364
0.765 0.760 0.227 0.904
(2.1) (5.0) (5.2) (10.5)
(2.3) (4.4) (6.0) (9.6)
(2.7) (3.1) (4.7) (8.4)
(1.9) (3.1) (5.7) (7.8)
Online self-management for gay men living with HIV
Significant improvements by intervention group participants between baseline and follow-up were found for PROQOLHIV subscales physical health and symptoms (P < 0.001); body change (P = 0.01); social relationships (P = 0.02); intimate relationships (P = 0.01); stigma (P = 0.01); emotional distress (P = 0.01); and health concerns (P = 0.01). Intervention group participants experienced a significant increase in depression symptomology scores (P = 0.02) and a reduction in general self-efficacy (P = 0.01). There were no significant between-group differences (Table 3). Discussion These two pilot studies provide important preliminary information about online self-management programs for gay men with HIV. The studies show that an online intervention aimed at facilitating self-management among gay men living with HIV is both feasible and well accepted, and support the conduct of a larger randomised study with sufficient power to assess program efficacy. A significant weakness of the program assessed in these pilot studies was the steep decline in posts to the discussion boards. This is a commonly reported problem in online delivery of health interventions with reduced levels of participant engagement over time.16,28,29 Data regarding number of logins and post-readings would have been beneficial in determining attenuation, however the software did not enable this function. The main reason for not posting cited by participants was time limitations. While the desire for higher group engagement was expressed, participants were discouraged by the delayed or lack of responses to posts. According to Bennett, loss of interest over time is a frequent outcome of the limited structure and low intensity typical of online interventions and may be improved through the use of push reminders, incentives, managing participant expectations and providing personal contact and feedback.12 Increasing the number of participants has been suggested as contributing to more active and lively discussion.16 However, increasing the group size for Pilot 2 of the present study did not improve discussion board engagement. In order to address this limited engagement, a weekly ‘live chat’ will be implemented in future versions of the Positive Outlook program. Through the facilitation of a live chat, we will aim to create an environment where ‘virtual’ conversations are enhanced by instant responses, while maintaining the anonymity of participants. We hypothesise that live chat will also assist in the development of group roles and enhance perceptions of social support. Participants will also be sent regular SMS and email reminders to encourage program use and discussion board engagement. Although these studies were not designed to determine efficacy and were not powered to detect significance, the data indicates that participation in the Positive Outlook program was associated with improvements in quality of life. The intervention group participants in both pilot studies demonstrated significant improvements in the PROQOL-HIV domains of physical health and symptoms and body change. Additionally, intervention participants in Pilot 2 achieved significant improvements for health concerns, and each of the psychosocial domains (social relationships, intimate relationships, stigma and emotional
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distress). These findings suggest potential efficacy, and thus justify the conduct of a larger RCT. Conflicting findings on the DASS for depression were observed between the two studies. In Pilot 1, participants’ depression scores improved, however in Pilot 2, they slightly worsened. While we do not believe this worsening reflects a true effect of the intervention, it is possible that bringing difficult psychological issues to the fore may have resulted in a lowering of mood in some participants. Participants should be closely monitored for depression symptomology in the proposed RCT. The data presented here from two pilot studies of the Positive Outlook program suggest that online self-management intervention for PWHIV are feasible and acceptable to participants and have the potential to enhance participants’ quality of life, self-efficacy and health-related outcomes. The ability to access both synchronous and asynchronous HIV information and education, goal-setting and skill-building activities and peer support via an online program could remove some of the current barriers to accessing support services for PWHIV in Australia. The program will be evaluated with a RCT with a sufficient sample size to assess program efficacy. Conflicts of interest None declared. References 1 Grierson J, Pitts M, Koelmeyer R. HIV Futures Seven: The health and wellbeing of HIV-positive people in Australia. In: Monograph Series Number 88. Melbourne: The Australian Research Centre in Sex, Health and Society, La Trobe University; 2013. 2 Millard T, McDonald K, Elliott J, Slavin S, Rowell S, Girdler S. Informing the development of an online self-management program for men living with HIV: a needs assessment. BMC Public Health 2014; 14: 1209. doi:10.1186/1471-2458-14-1209 3 Mao L, Kidd MR, Rogers G, Andrews G, Newman CE, Booth A, Saltman DC, Kippax SC. Social factors associated with major depressive disorder in homosexually active, gay men attending general practices in urban Australia. Aust N Z J Public Health 2009; 33: 83–6. doi:10.1111/j.1753-6405.2009.00344.x 4 Australian Bureau of Statistics (ABS). ABS 2007 National Survey of Mental Health and Wellbeing: summary of results. ABS cat. no. 4326.0. Canberra: ABS; 2008. 5 Judd F, Komiti A, Chua P, Mijch A, Hoy J, Grech P, Street A, Lloyd J, Williams B. Nature of depression in patients with HIV/AIDS. Aust N Z J Psychiatry 2005; 39: 826–32. doi:10.1080/j.1440-1614.2005. 01659.x 6 Jia H, Uphold CR, Wu S, Reid K, Findley K, Duncan PW. Healthrelated quality of life among men with HIV infection: effects on social support, coping and depression. AIDS Patient Care STDS 2004; 18: 594–603. doi:10.1089/apc.2004.18.594 7 Derlega VJ, Winstead BA, Greene K, Serovich J, Elwood WN. Reasons for HIV disclosure/nondisclosure in close relationships: testing a model of HIV–disclosure decision making. J Soc Clin Psychol 2004; 23: 747–67. doi:10.1521/jscp.23.6.747.54804 8 Mayfield-Arnold EM, Rice E, Flannery D, Rotheram-Borus MJ. HIV disclosure among adults living with HIV. AIDS Care 2008; 20: 80–92. doi:10.1080/09540120701449138 9 Crepaz N, Marks G. Serostatus disclosure, sexual communication and safer sex in HIV-positive men. AIDS Care 2003; 15: 379–87. doi:10.1080/0954012031000105432
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psychosocial issues for men living with HIV: a study protocol. BMC Public Health 2014; 14: 106. doi:10.1186/1471-2458-14-106 Pope C, Ziebland S, Mays N. Analysing qualitative data. BMJ 2000; 320: 114–6. doi:10.1136/bmj.320.7227.114 Duracinsky M, Herrmann S, Berzins B, Armstrong AR, Kohli R, Le Coeur S, Diouf A, Fournier I, Schechter M, Chassany O. The development of PROQOL-HIV: an international instrument to assess the health-related quality of life of persons living with HIV/AIDS. J Acquir Immune Defic Syndr 2012; 59: 498–505. doi:10.1097/ QAI.0b013e318245cafe Osborne RH, Elsworth GR, Whitfield K. The health education impact questionnaire (heiQ): an outcomes and evaluation measure for patient education and self-management interventions for people with chronic conditions. Patient Educ Couns 2007; 66: 192–201. doi:10.1016/ j.pec.2006.12.002 Lovibond PF, Lovibond SH. The structure of negative emotional states: Comparison of the Depression Anxiety Stress Scales (DASS) with the Beck Depression and Anxiety Inventories. Behav Res Ther 1995; 33: 335–43. doi:10.1016/0005-7967(94)00075-U Goodger B, Byles J, Higganbotham N, Mishra G. Assessment of a short scale to measure social support among older people. Aust N Z J Public Health 1999; 23: 260–5. doi:10.1111/j.1467-842X.1999. tb01253.x Schwarzer R, Jerusalem M. Generalized self-efficacy scale. In Weinman J, Wright S, Johnston M editors. Measures in health psychology: A user’s portfolio Causal and control beliefs. Windsor: NFER-NELSON; 1995. pp 35–37. Ross MW, Hunter CE, Condon J, Collins P, Begley K. The mental adjustment to HIV scale: measurement and dimensions of response to AIDS/HIV disease. AIDS Care 1994; 6: 407–11. doi:10.1080/0954 0129408258655 Jennings A, Powell J, Armstrong N, Sturt J, Dale J. A virtual clinic for diabetes self-management: pilot study. J Med Internet Res 2009; 11: e10. doi:10.2196/jmir.1111 Eysenbach G. The law of attrition. J Med Internet Res 2005; 7: e11. doi:10.2196/jmir.7.1.e11
www.publish.csiro.au/journals/sh
Sexual Health, 2015, 12, 308–314 http://dx.doi.org/10.1071/SH15064
Online self-management for gay men living with HIV: a pilot study Tanya Millard A,H, Karalyn McDonald A,B,C, Sonya Girdler D, Sean Slavin E and Julian Elliot A,F,G A
Department of Infectious Diseases, Monash University, Level 5, Alfred Centre, 99 Commercial Road, Melbourne, Vic. 3004, Australia. B Jean Hailes Research Unit, Monash University, Melbourne, Vic. 3004, Australia. C Australian Research Centre in Sex, Health and Society, La Trobe University, Melbourne, Vic. 3000, Australia. D School of Occupational Therapy and Social Work, Centre for Research into Disability and Society, Curtin University, Perth, WA 6845, Australia. E Centre for Social Research in Health, University of New South Wales, Sydney, NSW 2052, Australia. F Infectious Diseases Unit, Alfred Hospital, Level 2 Burnet Tower, 85 Commercial Road, Melbourne, Vic. 3004, Australia. G Centre for Population Health, Burnet Institute, Melbourne, Vic., 3004, Australia. H Corresponding author. Email: [email protected]
Abstract. Background: The aim of this pilot study was to assess the feasibility, acceptability and effectiveness of Positive Outlook, an online self-management program for gay men living with HIV in Australia. Methods: Two pilot studies were conducted, a small feasibility study (Pilot 1) followed by a pilot randomised controlled study (Pilot 2). Pilot 1 employed a pre and post-test design and included 10 men. Within- and between-group differences were evaluated in Pilot 2, which involved 37 participants randomly assigned to receive the Positive Outlook Program or usual care. We report on feasibility, acceptability and a range of preliminary efficacy outcomes, including health education impact, HIV-related quality of life and HIV-related self-efficacy. Results: The program was well accepted by participants with some decline in engagement with the discussion boards witnessed over the duration of the program. Overall, intervention group participants demonstrated improvements in the majority of efficacy outcome measures, including HIV-related quality of life, self-efficacy, self-management skills, social support and adjustment to HIV. Conclusion: These pilot studies demonstrated that an online program to facilitate self-management among gay men living with HIV is both feasible and well accepted by participants who persisted with the program per protocol. Preliminary data suggest that the Positive Outlook program has the potential to enhance participants’ quality of life, self-efficacy and health related outcomes, and demonstrates the need for further study with a larger sample. Additional keywords: internet, Positive Outlook program, quality of life, self-efficacy, web-based. Received 1 November 2014, accepted 10 April 2015, published online 22 June 2015
Background Psychosocial aspects associated with an HIV diagnosis have been identified as substantially impacting health, wellbeing and quality of life.1,2 In a cross-sectional survey of people with HIV (PWHIV) in Australia, 40% of respondents reported ever experiencing depression, a rate almost double that of the general population.1,3,4 Depression among PWHIV has been linked with social isolation and withdrawal, and negatively impacts general health, wellbeing and health related quality of life.3,5,6 Considerable stress is experienced surrounding disclosure of HIV-positive status and perceived stigma has been identified as a constant barrier to disclosure.7,8 This is concerning considering that disclosure provides a means for social support and has found to be protective against depression Journal compilation CSIRO 2015
and participation in high-risk sexual behaviours.8,9 Despite existing services and supports, psychosocial issues continue to have a strong negative impact on the lives of PWHIV.2 Barriers to existing face-to-face programs include location and transport, lack of time, stigma and the desire for anonymity, and lack of engagement with the community organisations that deliver these programs.10,11 Improved access to the internet has increased the role that online delivery plays in health programs,12 particularly for populations that find it difficult to engage with existing services.13 Online health programs provide consumers with information and support,12 opportunities to learn self-help strategies,14 obtain peer support15 and additional support from health professionals.16 Online delivery offers several advantages www.publish.csiro.au/journals/sh
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over traditional face-to-face programs, including convenience, availability, anonymity and low scale-up costs.12,14 Online delivery is increasingly being employed in HIV programming, however, there is little empirical evidence of the effect of these programs on the health and wellbeing of PWHIV.17 The Positive Outlook program was developed to address the gaps within existing support programs for PWHIV, using online delivery and the anonymity and convenience this provides. This paper reports on the findings of the pilot phase of Positive Outlook. Two pilot studies were conducted, an initial feasibility study (Pilot 1) followed by a randomised controlled study (Pilot 2). Methods Intervention The Positive Outlook program is based on self-efficacy theory18 and utilises a self-management approach19 to enhance participants’ skills, confidence and ability to manage the psychosocial aspects of HIV in their daily lives. The program consists of a series of information modules, goal-setting and action-planning activities and discussion boards, and is delivered as a peer-facilitated closed group. Participants are encouraged to access the program via the password-protected Positive Outlook website for ~90 min per week for 7 weeks. The theoretical framework and full intervention description have been published previously.20 Control Control group participants in Pilot 2 continued with their ‘usual care’, including primary health and community based services and supports without any other additional intervention. Study design We conducted a single-arm pilot feasibility study followed by a pilot randomised controlled trial (RCT). Both studies aimed to determine feasibility and acceptability of the program and included a qualitative process assessment and a quantitative assessment of preliminary efficacy. Participants Inclusion criteria were a positive HIV diagnosis, male sex, age over 18 years, adequate English skills, residing in Australia, and access to a computer and the internet. For Pilot 1, participants were recruited through the Western Australian AIDS Council. For Pilot 2, participants were recruited nationally in response to web- and print-based advertisements delivered via Facebook, community organisations, the Star Observer and Melbourne Community Voice newspapers, hospitals and GP clinics. People registering interest in the study were sent electronic consent forms, baseline questionnaires and registration forms, they were then allocated into the ‘usual care’ control group or the intervention group using a computer-generated list of random numbers. Qualitative assessment Interviews with participants at completion of the program were used for process evaluation. A semi-structured interview explored participants’ experiences using the program, ease of website navigation and satisfaction with group process and website
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content. The questions also explored suggestions for change and improvement. Interviews were conducted via phone by a member of the research team (KM) and were digitally recorded. Interviews were then transcribed verbatim and thematically analysed.21 Participants in Pilot 2 were also sent a feedback questionnaire exploring their experiences using the program, most useful aspects and suggestions for change. They were also asked to rate the usefulness of the discussion boards, activities and content. Pseudonyms are used in the presentation of participants’ quotes throughout this manuscript. Quantitative assessment Measures Outcome measures were administered at baseline and post intervention. Primary outcome measures were: HIV-specific quality of life as measured by the Patient Reported Outcomes Quality of Life – HIV (PROQOL-HIV);22 outcomes of health education and self-management skills as measured by the Health Education Impact Questionnaire (HeiQ);23 and HIVspecific self-efficacy measured by a scale specifically developed for this study (Positive Outlook Self Efficacy Scale (POSE). This scale was developed to address a significant gap in the ability of existing standardised questionnaires to evaluate the specific outcomes targeted by this intervention; in particular, participants confidence in their skills and abilities for disclosure of HIV status and management of HIV within intimate relationships. Secondary outcome measures included the Depression, Anxiety, Stress Scale (DASS-21);24 social support as measured by the Duke Social Support Index (DSSI);25 self-efficacy as measured by the Generalised Self-Efficacy Scale (GSE);26 and domain-specific adjustment as measured by the Mental Adjustment to HIV Scale (MAH).27 Outcome measures are described in full detail in the previously described protocol.20 All scales have been validated for use in people in Australia and have either been specifically developed for PWHIV or validated for use in PWHIV; or are widely used instruments for people with chronic conditions and appropriate for use in this population given the absence of outcome measures specifically developed/ validated for PWHIV. Data analysis To evaluate preliminary effectiveness of the program, t-tests were conducted on pre-test and post-test data. Within-group comparisons were made using paired t-tests and between-group comparisons were made using independent samples t-tests. Statistical significance was set at P < 0.05. As these studies were not powered to detect statistical significance, results regarding efficacy need to be interpreted with caution. We aim to determine preliminary efficacy only. Data analysis was conducted using SPSS v20 (IBM, Armonk, NY, USA). Results Pilot 1 Ten men were enrolled in Pilot 1. The average age was 47 years, mean time since HIV diagnosis was 13 years, nine participants reported taking antiretroviral therapy and the majority were
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unemployed (78%). One participant withdrew in Week 5 due to personal issues.
facilitators and participants were anonymous was identified as a priority.
Usage, satisfaction and feedback
Preliminary efficacy evaluation
All participants posted at least once to the discussion boards. There was a decline in the use of the discussion boards over the 7 weeks, from seven participants posting in Week 1 to a single participant in Week 7. Six men were interviewed at completion of the program. Despite limited posts to the discussion boards, participants revealed that they were still engaging with the content and reading others’ posts. Participants reported that the website was relatively easy to navigate and that they were generally satisfied with the program content. For example, when asked what he got out of participating in the program, Steve responded: ‘Well a general idea of how other people are coping and what they are doing and their survival techniques. Yeah it gives you a bit of an idea about what to say and how to do it’. Ensuring both
Overall, improvements in the majority of outcome measures were demonstrated between pre-test and post-test follow-up. Significant improvements were achieved on the PROQOL-HIV subscales of physical health and symptoms (P = 0.04) and body change (P = 0.04); and the POSE for relationships (P = 0.04); emotions (P = 0.01) and total score (P = 0.04). A significant reduction in depression symptomology as measured by the DASS21 was also achieved between the two time points (P = 0.02) (Table 1). Changes between Pilots 1 and 2 To address the engagement issues identified during Pilot 1, we increased the target group size to 18 participants. In doing
Table 1. Pilot 1 preliminary efficacy DASS-21, Depression, Anxiety, Stress Scale; DSSI, Duke Social Support Index; GSE, Generalised Self-Efficacy Scale; HeiQ, Health Education Impact Questionnaire; MAH, Mental Adjustment to HIV Scale; POSE, Positive Outlook Self Efficacy Scale; PROQOL-HIV, Patient Reported Outcomes Quality of Life – HIV. *Denotes significance at P < 0.05 Outcome Primary outcome measures PROQOL-HIV Physical health and symptoms Body change Social relationships Intimate relationships Stigma Emotional distress Health concerns Treatment impact HeiQ Health-directed activity Positive engagement in life Emotional distress Self-monitoring and insight Constructive attitudes and approaches Skill and technique acquisition Social integration and support Health service navigation POSE Knowledge Communication Relationships Social Emotions Total score Secondary outcome measures DASS Depression Anxiety Stress DSSI Social participation Social satisfaction GSE (sum) MAH (sum)
Baseline mean (s.d.)
Follow-up mean (s.d.)
P-value
71.8 70.8 80.6 69.8 77.8 70.1 76.4 81.9
(23.6) (22.1) (33.1) (41.5) (28.5) (32.6) (22.0) (15.9)
77.7 82.8 88.9 66.7 75.0 86.1 77.3 77.5
(29.2) (20.5) (21.1) (40.6) (31.3) (19.7) (17.0) (18.6)
0.042* 0.042* 0.141 0.216 0.414 0.066 1.000 0.343
2.8 2.8 3.2 3.3 3.1 3.0 2.7 3.2
(0.8) (0.8) (0.7) (0.4) (0.8) (0.7) (0.9) (0.9)
2.8 2.9 3.2 3.1 3.2 3.2 3.0 3.3
(0.3) (0.7) (0.5) (0.5) (0.7) (0.6) (0.7) (0.8)
1.000 0.226 0.953 0.591 0.516 0.175 0.089 0.458
(3.3) (9.1) (11.3) (7.2) (9.5) (36.8)
0.778 0.574 0.038* 0.258 0.011* 0.038*
17.4 23.2 36.4 17.0 24.2 118.3
(3.2) (8.1) (11.9) (8.9) (10.4) (39.3)
10.9 (11.2) 3.4 (4.7) 8.4 (11.4) 8.0 17.0 28.8 95
(2.3) (3.7) (10.2) (9.6)
17.7 25.9 41.2 18.9 28.0 131.6
5.8 (9.6) 5.6 (8.6) 7.6 (8.0) 8.3 16.8 29.2 93.4
(2.12) (3.8) (10.4) (9.4)
0.017* 0.713 0.458 0.257 0.891 0.953 0.553
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this, we aimed to achieve a critical mass of interaction and increase the number of discussion board posts. An extra facilitator was recruited to support this. We also modified
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procedures so that facilitators remained anonymous to group participants and vice versa. Pilot 2 Seventeen participants were allocated to the intervention group and 18 to the control group. Participant disposition is outlined in Fig. 1. Groups were well balanced with regard to baseline characteristics (Table 2).
n = 57 registered interest n = 44 provided consent n = 35 completed baseline questionnaire and registration form
Usage, satisfaction and feedback Randomisation (n = 35)
n = 17 allocated to Positive Outlook intervention group n = 2 withdrew from the program for personal reasons
n = 18 allocated to ‘usual care’ control group
n = 9 completed post intervention follow-up assessment
n = 12 completed follow-up assessment
All but four intervention group participants posted to the discussion board at least once. Again, a steep decline in participant posts to the discussion boards occurred over the duration of the program, from 12 participants in Week 1, to 3 participants in Week 7. Interviews were conducted with four participants following the program and seven participants completed the feedback questionnaire. Despite the decline in discussion board posts, post-test interviews and follow-up questionnaires indicated that the intervention was very well accepted. Respondents consistently described the value of the program in providing the opportunity to share experiences and gain insight into how other people are managing in daily life. ‘Well I think it raised a lot of issues that we all got to discuss amongst ourselves. I found it interesting sharing stories with other people and I found it interesting reading what others thought about things.’
Fig. 1. Participant disposition (Pilot 2).
Table 2. Pilot 2 participant baseline characteristics ARV, antiretroviral Sociodemographic characteristics
Intervention
Age, mean (s.d.) Marital status Single Partnered Education Secondary school Tertiary Employment status Full time Part-time/casual Unemployed/retired Income (weekly) < $600 > $600 Country of birth Australia Other Living situation Alone With partner With others Year diagnosed HIV +, mean (s.d. years) Taking ARV medications Yes No Year began taking ARV medications, mean (s.d. years)
40.29 (11.56)
Control 42.72 (8.03)
Total 41.54 (9.83)
12 5
12 6
24 11
6 11
3 15
9 26
10 3 4
11 2 5
21 5 9
6 11
5 13
20 15
14 3
11 7
25 10
8 4 5 2002.06 (10.04)
4 5 9 2002.39 (8.27)
12 9 14 2002.23 (9.04)
13 4 2004.08 (9.24)
16 2 2006.15 (5.64)
29 6 2005.12 (7.58)
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Almost all of the participants who completed the survey (6/7) rated the discussion boards as the most useful aspect of the program, however, in the interviews, participants expressed the desire for a higher level of engagement with the boards. Reasons for limited posts included time limitations and feeling discouraged by the sporadic responses to posts, highlighted here by Joel: ‘Maybe coax more people into posting on the discussion board a bit more. I regret not posting more. I think it will take a bit of time to build. It looked like a lot of people dropped out and I was the only one who was still posting’. The key benefits described by participants were the anonymity enabled by the online nature of the program and the convenience of being able to access the program at any time. Jack said, ‘I guess there is the anonymity of doing it online. I guess it’s just the time factor, finding time to go online. Every
time a new discussion would open up, you would go and have a look at it and see if you could add anything relevant to what was being talked about’. The online mode of delivery was considered an advantage over face-to-face groups as it allowed for open and honest discussions about sensitive topics. Scott felt he could talk about anything: ‘Because it is online I think that people can feel that freedom there that they are not going to be judged or that it will affect them that much you know. . .it’s just having that forum where you can say what you want really’. Preliminary efficacy evaluation Participants in the intervention group demonstrated improvements in the majority of outcome measures.
Table 3. Pilot 2 preliminary efficacy Between refers to differences between intervention and control group, within is within intervention group only. PHS, physical health and symptoms; BC, body change; SR, social relationships; IR, intimate relationships; ST, stigma; ED, emotional distress; HC, health concerns; TI, treatment impact; HAD, health directed activity; PAE, positive and active engagement in life; ED, emotional distress; SM, self monitoring and insight; CAA, constructive attitudes and approaches; STA, skill and technique acquisition; SIS, social integration and support; HSN, health service navigation. K, knowledge; C, communication; R, relationships; S, social; E, emotions; TS, total score; DEP, depression; ANX, anxiety; STR, stress; PT, participation; SAT, satisfaction DASS-21, Depression, Anxiety, Stress Scale; DSSI, Duke Social Support Index; GSE, Generalised Self-Efficacy Scale; HeiQ, Health Education Impact Questionnaire; MAH, Mental Adjustment to HIV Scale; POSE, Positive Outlook Self Efficacy Scale; PROQOL-HIV, Patient Reported Outcomes Quality of Life – HIV. *Denotes P < 0.05
Outcome PROQOL-HIV PHS BC SR IR ST ED HC TI HeiQ HDA PAE ED SMI CAA STA SIS HSN POSE K C R S E TS DASS DEP ANX STR DSSI PT SAT GSE MAH
Intervention group mean (s.d.) Baseline Follow-up
P-value (within)
Control group mean (s.d.) Baseline Follow-up
P-value (within)
P-value (between)
65.4 64.8 75.0 54.2 50.0 64.2 59.8 83.1
(22.2) (19.2) (28.9) (37.3) (33.9) (26.6) (31.7) (13.9)
80.6 78.5 88.3 75.5 75.0 82.1 77.7 86.3
(26.3) (18.5) (27.9) (36.3) (32.3) (27.6) (30.1) (12.6)
0.005* 0.007* 0.016* 0.013* 0.008* 0.010* 0.008* 0.130
65.6 64.9 70.8 56.5 61.7 62.5 60.2 76.7
(18.7) (20.8) (22.0) (26.0) (30.0) (22.8) (22.3) (17.7)
85.4 80.8 80.8 74.4 74.2 80.1 77.3 86.0
(22.3) (23.4) (31.3) (31.3) (32.2) (31.7) (39.0) (15.7)
0.001* 0.055 0.125 0.063 0.153 0.019* 0.080 0.056
0.583 0.677 0.551 0.966 0.890 0.853 0.975 0.986
2.8 3.0 2.7 3.1 3.0 2.7 2.4 3.2
(0.6) (0.6) (0.7) (0.3) (0.7) (0.4) (0.7) (0.7)
3.0 3.0 2.7 3.1 3.1 2.8 2.5 3.1
(0.7) (0.5) (0.7) (0.3) (0.5) (0.4) (0.7) (0.70
0.166 0.203 0.747 0.632 0.442 0.400 0.421 0.116
2.8 2.9 2.7 3.1 3.0 2.8 2.7 3.1
(0.6) (0.7) (0.7) (0.4) (0.5) (0.6) (0.6) (0.5)
2.9 3.0 2.9 3.1 3.1 3.0 2.8 3.2
(0.7) (0.7) (0.7) (0.4) (0.6) (0.5) (0.8) (0.6)
0.074 0.149 0.108 0.712 0.049 0.028* 0.597 0.190
0.960 0.748 0.503 0.915 0.835 0.256 0.315 0.601
(5.3) (9.9) (13.0) (7.0) (9.6) (38.8)
0.216 0.053 0.080 0.875 0.927 0.076
15.7 23.2 36.2 17.8 24.4 117.3
(4.2) (12.1) (15.3) (8.4) (10.9) (48.5)
0.781 1.000 0.658 0.615 0.760 0.810
0.953 0.948 0.664 0.662 0.736 0.775
14.8 20.8 32.5 17.3 23.6 109.0
(5.1) (9.3) (14.2) (7.1) (9.1) (38.1)
15.3 23.4 35.0 17.2 23.6 114.6
(3.8) (11.4) (13.4) (5.7) (8.8) (38.6)
15.4 23.2 37.1 18.4 24.9 118.9
12.9 (12.9) 8.8 (11.0) 14.9 (10.9)
14.8 (13.0) 9.3 (11.5) 15.8 (11.8)
0.019* 0.509 0.361
15.0 (11.8) 10.7 (8.5) 16.0 (10.9)
12.2 (12.2) 8.5 (8.5) 13.1 (10.8)
0.137 0.023* 0.132
0.617 0.824 0.508
8.6 14.6 29.7 94.7
9.1 14.4 28.2 95.5
0.088 0.740 0.010* 0.499
9.0 16.5 30.0 96.6
8.8 15.9 30.7 95.0
0.825 0.167 0.406 0.364
0.765 0.760 0.227 0.904
(2.1) (5.0) (5.2) (10.5)
(2.3) (4.4) (6.0) (9.6)
(2.7) (3.1) (4.7) (8.4)
(1.9) (3.1) (5.7) (7.8)
Online self-management for gay men living with HIV
Significant improvements by intervention group participants between baseline and follow-up were found for PROQOLHIV subscales physical health and symptoms (P < 0.001); body change (P = 0.01); social relationships (P = 0.02); intimate relationships (P = 0.01); stigma (P = 0.01); emotional distress (P = 0.01); and health concerns (P = 0.01). Intervention group participants experienced a significant increase in depression symptomology scores (P = 0.02) and a reduction in general self-efficacy (P = 0.01). There were no significant between-group differences (Table 3). Discussion These two pilot studies provide important preliminary information about online self-management programs for gay men with HIV. The studies show that an online intervention aimed at facilitating self-management among gay men living with HIV is both feasible and well accepted, and support the conduct of a larger randomised study with sufficient power to assess program efficacy. A significant weakness of the program assessed in these pilot studies was the steep decline in posts to the discussion boards. This is a commonly reported problem in online delivery of health interventions with reduced levels of participant engagement over time.16,28,29 Data regarding number of logins and post-readings would have been beneficial in determining attenuation, however the software did not enable this function. The main reason for not posting cited by participants was time limitations. While the desire for higher group engagement was expressed, participants were discouraged by the delayed or lack of responses to posts. According to Bennett, loss of interest over time is a frequent outcome of the limited structure and low intensity typical of online interventions and may be improved through the use of push reminders, incentives, managing participant expectations and providing personal contact and feedback.12 Increasing the number of participants has been suggested as contributing to more active and lively discussion.16 However, increasing the group size for Pilot 2 of the present study did not improve discussion board engagement. In order to address this limited engagement, a weekly ‘live chat’ will be implemented in future versions of the Positive Outlook program. Through the facilitation of a live chat, we will aim to create an environment where ‘virtual’ conversations are enhanced by instant responses, while maintaining the anonymity of participants. We hypothesise that live chat will also assist in the development of group roles and enhance perceptions of social support. Participants will also be sent regular SMS and email reminders to encourage program use and discussion board engagement. Although these studies were not designed to determine efficacy and were not powered to detect significance, the data indicates that participation in the Positive Outlook program was associated with improvements in quality of life. The intervention group participants in both pilot studies demonstrated significant improvements in the PROQOL-HIV domains of physical health and symptoms and body change. Additionally, intervention participants in Pilot 2 achieved significant improvements for health concerns, and each of the psychosocial domains (social relationships, intimate relationships, stigma and emotional
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distress). These findings suggest potential efficacy, and thus justify the conduct of a larger RCT. Conflicting findings on the DASS for depression were observed between the two studies. In Pilot 1, participants’ depression scores improved, however in Pilot 2, they slightly worsened. While we do not believe this worsening reflects a true effect of the intervention, it is possible that bringing difficult psychological issues to the fore may have resulted in a lowering of mood in some participants. Participants should be closely monitored for depression symptomology in the proposed RCT. The data presented here from two pilot studies of the Positive Outlook program suggest that online self-management intervention for PWHIV are feasible and acceptable to participants and have the potential to enhance participants’ quality of life, self-efficacy and health-related outcomes. The ability to access both synchronous and asynchronous HIV information and education, goal-setting and skill-building activities and peer support via an online program could remove some of the current barriers to accessing support services for PWHIV in Australia. The program will be evaluated with a RCT with a sufficient sample size to assess program efficacy. Conflicts of interest None declared. References 1 Grierson J, Pitts M, Koelmeyer R. HIV Futures Seven: The health and wellbeing of HIV-positive people in Australia. In: Monograph Series Number 88. Melbourne: The Australian Research Centre in Sex, Health and Society, La Trobe University; 2013. 2 Millard T, McDonald K, Elliott J, Slavin S, Rowell S, Girdler S. Informing the development of an online self-management program for men living with HIV: a needs assessment. BMC Public Health 2014; 14: 1209. doi:10.1186/1471-2458-14-1209 3 Mao L, Kidd MR, Rogers G, Andrews G, Newman CE, Booth A, Saltman DC, Kippax SC. Social factors associated with major depressive disorder in homosexually active, gay men attending general practices in urban Australia. Aust N Z J Public Health 2009; 33: 83–6. doi:10.1111/j.1753-6405.2009.00344.x 4 Australian Bureau of Statistics (ABS). ABS 2007 National Survey of Mental Health and Wellbeing: summary of results. ABS cat. no. 4326.0. Canberra: ABS; 2008. 5 Judd F, Komiti A, Chua P, Mijch A, Hoy J, Grech P, Street A, Lloyd J, Williams B. Nature of depression in patients with HIV/AIDS. Aust N Z J Psychiatry 2005; 39: 826–32. doi:10.1080/j.1440-1614.2005. 01659.x 6 Jia H, Uphold CR, Wu S, Reid K, Findley K, Duncan PW. Healthrelated quality of life among men with HIV infection: effects on social support, coping and depression. AIDS Patient Care STDS 2004; 18: 594–603. doi:10.1089/apc.2004.18.594 7 Derlega VJ, Winstead BA, Greene K, Serovich J, Elwood WN. Reasons for HIV disclosure/nondisclosure in close relationships: testing a model of HIV–disclosure decision making. J Soc Clin Psychol 2004; 23: 747–67. doi:10.1521/jscp.23.6.747.54804 8 Mayfield-Arnold EM, Rice E, Flannery D, Rotheram-Borus MJ. HIV disclosure among adults living with HIV. AIDS Care 2008; 20: 80–92. doi:10.1080/09540120701449138 9 Crepaz N, Marks G. Serostatus disclosure, sexual communication and safer sex in HIV-positive men. AIDS Care 2003; 15: 379–87. doi:10.1080/0954012031000105432
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