MOTIVATIONS FOR AND BARRIERS TO HIV TESTING IN AUSTRALIA

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1 MOTIVATIONS FOR AND BARRIERS TO HIV TESTING IN AUSTRALIA INFORMATION TO SUPPORT THE REVISION OF THE NATIONAL HIV TESTING POLICY 2006 Rachel Koelmeyer Jeffrey Grierson Marian Pitts The Australian Research Centre in Sex, Health and Society La Trobe University March 2011

2 CONTENTS ACRONYMS & ABBREVIATIONS...3 PURPOSE OF REPORT...4 CONTEXT...4 DATA SOURCES...5 HIV Futures Six Survey...5 Midsumma Testing Patterns Survey...5 Social Research Report on the Check-It-Out Campaign...6 FINDINGS...7 Key Findings...7 Differences in Testing Practices over Time: Data from the HIV Futures Six Survey...8 Pre- and Post-Test Discussions...8 Characteristics of PLHIV Undergoing Testing...9 Motivations for HIV testing: Data from the HIV Futures Six Survey Motivations for HIV testing: Data from the Check-It-Out Evaluation Barriers to HIV testing: Data from the MidSumma Survey Barriers to HIV testing: Data from the Check-It-Out Evaluation DISCUSSION & RECOMMENDATIONS REFERENCES The Australian Research Centre in Sex, Health and Society Page 2 of 20

3 ACRONYMS & ABBREVIATIONS ACT ARCSHS ARV HIV MSM NSW NT PLHIV QLD SA STI TAS VIC Australian Capital Territory Australian Research Centre in Sex, Health and Society Antiretroviral treatment Human Immunodeficiency Virus Men who have sex with men New South Wales Northern Territory People Living with HIV Queensland South Australia Sexually Transmitted Infection Tasmania Victoria The Australian Research Centre in Sex, Health and Society Page 3 of 20

4 PURPOSE OF REPORT The purpose of this report is to provide information on the motivations for and barriers to HIV testing in Australia to support the review of the National HIV Testing Policy 2006, and in particular, the section on pre- and post-test discussions [1]. For completeness, we have also included data on changes in reported testing practices over time. CONTEXT The benefit and implications of taking a HIV test have changed over the course of the HIV epidemic. In the early days of the epidemic, prior to the introduction of effective antiretroviral treatments (ARV) in the mid-1990s, testing did not offer a great benefit to an individual in terms of treatment options and often led to increased anxiety, stigma and discrimination. Since more effective treatments have become available, the advantages of HIV testing to the individual undergoing testing have become clearer, particularly in terms of treatment, health monitoring and social support. The National HIV Testing Policy 2006 recommends that individuals undergoing HIV testing engage in a pre- and post-test discussion with their health care professional as an integral component of HIV testing [1]. Under the policy, the pre-test discussion should include obtaining the individual s informed consent for the test; assessing the individual s risk for contracting HIV and whether post-exposure prophylaxis is appropriate; assuring the individual of the confidentiality of the test; providing the individual with accurate information about the transmission of HIV, testing process and implications of testing positive, and an assessment of the individual s readiness for undergoing the test [1]. Post-test discussion guidelines are provided for both possible outcomes of HIV testing [1]. In the case that the test result is negative, the policy recommends that the provision of the negative test result and associated post-test discussion be conducted in accordance with the individual s education and HIV awareness in a manner appropriate to the individual s gender, culture and language [1]. Positive test results must be provided in person and the post-test discussion should address the individual s immediate needs and support; and, education, information and support about the emotional impact of the result, safe behaviour, disclosure of the individual s HIV status and treatment options [1]. The current HIV testing policy supercedes the 1998 Australian National Council on AIDS and Related Diseases/Intergovernmental Committee on AIDS and Related Diseases (ANCARD/IGCARD) HIV Testing Policy [2]. The Australian Research Centre in Sex, Health and Society Page 4 of 20

5 DATA SOURCES HIV Futures Six Survey The HIV Futures Six Survey was a national, cross-sectional survey of people living with HIV (PLHIV), conducted from October 2008 April 2009 to provide current information on the clinical and social aspects of living with HIV in Australia. The survey was an anonymous, self-complete survey addressing the following aspects of living with HIV: the health status of PLHIV; the attitudes of PLHIV towards HIV and ARV; service use and information sources about living with HIV and treatments; relationships, sex and the social world of PLHIV; illicit drug use practices; and, the socioeconomic situation of PLHIV (housing, employment and finances). This report includes findings from the HIV Futures Six Survey about the motivations of PLHIV for undergoing a HIV test when they first tested positive for HIV and the testing practices at the time the respondent underwent the test. The overall findings of the HIV Futures Six survey and a full description of the study methodology are reported elsewhere [3]. Overall, 1106 PLHIV completed the survey, representing an estimated 6.6% of the Australian population of PLHIV at the time [3]. The HIV Futures Six Survey data presented here have been weighted against Australian HIV surveillance data to ensure they are representative of the broader population of PLHIV in Australia [4]. Midsumma Testing Patterns Survey The MidSumma Testing Patterns Survey was conducted in January 2010 to assess testing patterns and preferences for syphilis and HIV tests among gay men. Survey respondents were recruited at the MidSumma gay community event in Victoria. A total of 376 people responded to the survey, of which 372 respondents self-identified as men. The majority of respondents (91.7%; 341) identified as gay or homosexual, 4.8% identified as bisexual and 3.2% identified as heterosexual. Participants were asked to rate how much each of ten potential barriers affected their ability to get tested for HIV using a Likert-scale where a score of one represented the barrier having no effect on the respondent s ability to get tested and a score of five represented the barrier very much affecting the respondent s ability to get tested. The data were summarised using the mean score for each item. Data from the MidSumma Testing Patterns Survey are currently unpublished. The Australian Research Centre in Sex, Health and Society Page 5 of 20

6 Social Research Report on the Check-It-Out Campaign In 2006, researchers from the Australian Research Centre in Sex, Health and Society (ARCSHS) conducted a social research project to evaluate the Check-It-Out Campaign conducted through the Victorian AIDS Council/Gay Men s Health Centre [5]. The campaign was funded by the Victorian Department of Human Services and aimed to increase testing for Sexually Transmitted Infections (STIs) and HIV among homosexually active men in Victoria [5]. The evaluation included five group interviews of six to eight HIV-negative men and focused on the social context in which STI and HIV testing occurs [5]. The interviews addressed knowledge and beliefs around STI testing and treatment; information sources; and, communication practices around sexual health and STI/HIV testing, including an assessment of the motivations and barriers for testing [5]. Thematic analysis was used to identify themes arising during the interviews [5]. Overall, the evaluation found that motivations and barriers arising during the group interviews concurred with the available literature on the motivations for, barriers to and experiences of HIV-positive and HIVnegative gay men in undergoing HIV testing [5]. Further information on the motivations for and barriers to HIV testing are included in this report. The Australian Research Centre in Sex, Health and Society Page 6 of 20

7 FINDINGS Key Findings Among HIV Futures Six respondents who reported undergoing a HIV test since 2006, only 25.7% reported engaging in a pre-test discussion, while 76.3% reported engaging in a post-test discussion. Over time, we observed a reduction in the proportion of respondents reporting testing positive in NSW and an increase in the proportion of respondents reporting testing positive in VIC and QLD. The most frequently reported reasons for undergoing a HIV test at the time of testing positive for HIV were becoming ill, routine health screening and a particular risk episode. There were some differences in the main reason for undergoing a HIV test at the time of testing positive among the main subpopulations of PLHIV (men who have sex with men, MSM, heterosexual men and women). MSM were more likely to report undergoing HIV testing as part of routine health screening. Women were more likely to report undergoing testing due to becoming ill or because their partner tested positive. Heterosexual men were more likely to report undergoing testing at their doctor s suggestion. The following potential barriers to respondents willingness to undergo a HIV test appeared to have the greatest impact on respondents decision to get tested: needing to tell sexual partners if they were diagnosed with HIV, the fear that others would find out about the testing, finding time to get tested, knowing where to go to get tested and having to return for the test result. The Australian Research Centre in Sex, Health and Society Page 7 of 20

8 Differences in Testing Practices over Time: Data from the HIV Futures Six Survey Pre- and Post-Test Discussions Overall, 22.6% of respondents reported undergoing a pre-test discussion prior to their positive HIV test; 55.5% reported undergoing a detailed post-test discussion. We investigated whether there was a difference in the proportion of respondents undergoing a pre-test discussion according to the period of HIV testing, focusing on respondents who were tested prior to the widespread availability of effective antiretroviral treatment (prior to 1998) and those who were tested after effective antiretroviral treatment became widely available, during the period when the 1998 ANCARD/IGCARD HIV Testing Policy was the governing testing policy ( ) and during the period in which the Department of Health and Ageing National HIV Testing Policy 2006 was the governing policy (2006 on). Respondents reported taking a HIV test between 1972 and The majority of respondents (53.2%) were tested prior to 1998, 32.3% were tested between 1998 and 2005 and14% underwent testing from 2006 onwards. No differences were observed in the proportion undergoing a pre-test discussion according to the period of testing (prior to 1998, , 2006 onwards); however there was a non-significant trend towards a higher proportion of those tested since 1998 reporting engaging in a pre-test discussion (Table 1). Table 1. Proportion of Respondents Engaging in a Pre-Test Discussion Over Time Percent Reporting By Period of Testing # Engaged in Pre-Test Discussion? Prior to onwards (n=531) (n=323) (n=140) Yes No # χ 2 test for difference: χ 2 = 2.267, df = 2, p = The Australian Research Centre in Sex, Health and Society Page 8 of 20

9 In contrast, there was a significant difference in the proportion of respondents reporting undergoing a detailed post-test discussion over time (Table 2). An increased proportion of respondents engaged in a post-test discussion between 1998 and 2005 and again from 2006, compared to respondents who were tested prior to Table 2. Proportion of Respondents Engaging in a Post-Test Discussion Over Time Engaged in Post-Test Discussion? Percent Reporting By Period of Testing # Prior to 1998 (n=531) (n=323) 2006 onwards (n=140) Yes No # χ 2 test for difference: χ 2 = , df = 2, p = <0.001 Characteristics of PLHIV Undergoing Testing We also investigated whether the characteristics of respondents undergoing a HIV test in each time period differed according to the main subpopulations of PLHIV (men who have sex with men, MSM; heterosexual men and women), country of birth and the state in which the respondent underwent testing. Age at testing was not investigated given the natural collinearity between age and period of testing. We did not detect any differences in the proportion of MSM, heterosexual men and women undergoing a HIV test in each period (χ 2 = 5.963, df = 4, p = 0.202), nor according to whether or not the respondent was born in Australia or overseas (χ 2 = 2.250, df = 2, p = 0.325). However we did observe some differences according the state in which the respondent tested positive. Given the lower proportion of PLHIV living in South Australia (SA), the Australian Capital Territory (ACT), Tasmania (TAS) and the Northern Territory (NT), we grouped respondents from SA, the ACT, TAS and the NT to assess differences in reported testing over time according to state. Our analysis reveals a decrease in the proportion of respondents reporting testing positive in NSW over time, particular since 2006, and an increase in the proportion of respondents reporting testing positive in VIC and QLD over time (Table 3). These differences may be explained by local health promotion campaigns targeted towards HIV testing. The Australian Research Centre in Sex, Health and Society Page 9 of 20

10 Table 3. Proportion of Respondents Undergoing a HIV test Over Time in Each State Percent of Respondents By Period of Testing # State of Testing Prior to onwards (n=494) (n=290) (n=124) SA/ACT/TAS/NT NSW VIC QLD WA # χ 2 test for difference: χ 2 = , df = 8, p = The Australian Research Centre in Sex, Health and Society Page 10 of 20

11 Motivations for HIV testing: Data from the HIV Futures Six Survey Respondents of the HIV Futures Six Survey were asked to provide the primary reason they took a HIV test at the time they were diagnosed with HIV. Table 4 outlines the reasons specified by the full sample of respondents. The most frequently reported reason for taking a HIV test was becoming ill. Routine health screening, a particular risk episode, doctor s suggestion and being a member of a risk group were also frequent reasons for taking a HIV test. Among those who reported other reasons for taking the test, experiencing persistent constitutional symptoms/suspected seroconversion illness, having another sexually transmitted infection (STI), testing in relation to other medical treatment and donating blood were the most common other reasons for testing specified. A small proportion of respondents (2.8%) reported being tested without their knowledge, in conflict with the requirement for obtaining informed consent for HIV testing during the pretest discussion [1]. We investigated whether the primary reasons for HIV testing have changed over the HIV epidemic. Our analysis focused on main reasons for HIV testing, which were specified by >1% of respondents. Over time, there has been an increase in the proportion of respondents taking an HIV test due to becoming ill or as part of routine health screening, and a decrease in the proportion taking a test due to their doctor s suggestion, because they were a member of a risk group or because their partner tested positive (see Table 5). There also appears to have been a decrease over time in the proportion of people who were tested without knowledge. We further investigated whether there were any differences in the main reasons for HIV testing according to age at the time of testing, whether the respondent was born in Australia or overseas, the state in which the respondent underwent HIV testing, and the main subpopulations of PLHIV. The Australian Research Centre in Sex, Health and Society Page 11 of 20

12 While a statistically significant difference in the main reasons for HIV testing according to age at the time of testing was not observed, there did appear to be a non-significant trend towards differences in the reasons for testing according to age (see Table 6). Those aged between years appeared more likely to report the following reasons for testing: became ill, routine health screening and their doctor s suggestion. Those aged and years appeared more likely to report testing due to a particular risk episode and starting a new relationship. It is possible that our analysis is insufficiently powered to detect a difference in the main reasons for HIV testing according to age. Table 4. Reasons for Taking a HIV Test Reason Frequency Percent Became ill Routine health screening Particular risk episode Doctor s suggestion Member of risk group Partner tested positive Other Starting new relationship 29 3 Tested without knowledge Antenatal testing 9 1 Required to undergo test (e.g., for migration) 10 1 Contact tracer/other health care worker suggestion Friend testing positive Overseas travel Insurance Medical test/research Availability of new treatments Total The Australian Research Centre in Sex, Health and Society Page 12 of 20

13 Table 5. Main Reasons for Taking a HIV Test According to Period of HIV Testing Percent Reporting By Period of HIV Testing # Reason Prior to onwards (n=511) (n=309) (n=136) Became ill Routine health screening Particular risk episode Doctor s suggestion Member of risk group Partner tested positive Other Starting new relationship * Tested without knowledge * # χ 2 test for differences in main reasons: χ 2 = , df = 16, p = <0.001 * Cells with frequencies <5. Interpret these percentages with caution. Table 6. Main Reasons for Taking a HIV Test According to Age at Time of HIV Testing Percent Reporting By Age at Testing # Reason years years years (n=475) (n=361) (n=89) Became ill Routine health screening Particular risk episode * Doctor s suggestion Member of risk group Partner tested positive Other * Starting new relationship * Tested without knowledge * # χ 2 test for differences in main reasons: χ 2 = , df = 16, p = * Cells with frequencies <5. Interpret these percentages with caution. The Australian Research Centre in Sex, Health and Society Page 13 of 20

14 We found no differences in the main reasons for HIV testing according to whether the respondent was born in Australia or overseas (χ 2 = 5.031, df = 8, p = 0.754) or according to the state in which the respondent underwent HIV testing (χ 2 = , df = 32, p = 0.944). It is possible however that we did not have sufficient power in our analysis to detect differences in the main reasons for testing according to state, given the high degrees of freedom and small number of respondents in each category. Some differences were found in the main reasons for testing between the main subpopulations of PLHIV (Table 7). MSM were most likely to report undergoing HIV testing as part of routine health screening. Women were most likely to report testing due to becoming ill and because their partner had tested positive. Heterosexual men were most likely to report undergoing testing at their doctor s suggestion. Table 7. Main Reasons for Taking a HIV Test According to Subpopulations of PLHIV Percent Reporting By Subpopulation # Reason MSM (n=775) Heterosexual Men (n=64) Women (n=84) Became ill Routine health screening Particular risk episode Doctor s suggestion Member of risk group * Partner tested positive Other Starting new relationship * 1.2* Tested without knowledge * 3.6* # χ 2 test for differences in main reasons: χ 2 = , df = 16, p = * Cells with frequencies <5. Interpret these percentages with caution. The Australian Research Centre in Sex, Health and Society Page 14 of 20

15 Motivations for HIV testing: Data from the Check-It-Out Evaluation The discourse around motivations for undergoing a HIV test identified the key motivations for undergoing a HIV test to be those associated with a particular risk episode and regular testing practice [5]. Regular testing for HIV was well known as a common practice among gay men and found to be a strong social motivator for HIV testing [5]. There was a strong sense of the social responsibility of getting tested [5]. The consequences of becoming HIVpositive, as well as the fear and anxiety of becoming positive, were found to be both motivators and barriers to HIV testing [5]. The Australian Research Centre in Sex, Health and Society Page 15 of 20

16 Barriers to HIV testing: Data from the MidSumma Survey Of the respondents who completed the MidSumma survey, 86.1% of respondents had undergone a HIV test at some point, while 13.6% of respondents had never been tested. When asked how much impact each of ten potential testing barriers had on respondents willingness to take a HIV test, needing to tell sexual patterns of their HIV status and having to return to their doctor to get the test result had the greatest impact overall on the respondents decision to get tested (see Table 8). Finding time to get tested and the fear that undergoing the test would become known to other people were also among the barriers most impacting on the decision to get tested. Table 8. Mean Scores for Barriers to HIV Testing (all Respondents) Barriers to testing for HIV Mean Score # Needing to tell my sexual partners if I am diagnosed with HIV 2.48 Having to return for test result 2.39 Finding time to get tested 2.24 Worry that testing would become known to other people 2.23 Getting an appointment 2.09 Needing to have a discussion with the doctor after getting my test results 2.07 Knowing where to go 2.03 Finding a doctor 2.02 Cost of testing 1.99 Having to test too often 1.98 Embarrassment about testing 1.97 Needing to have a discussion with the doctor before getting tested 1.97 # For Likert scale where 1 = no effect and 5 = very much impacted on ability to undergo a HIV test. Among those who had never undergone a HIV test, needing to tell sexual partners about their status and fear that taking the test would become known to other people remained among the strongest barriers; however, other barriers, particularly knowing where to go, finding a doctor and embarrassment about testing, ranked more highly as barriers than in the overall population of respondents (Table 9). Overall, the mean scores for each barrier were higher in those who had not been tested. The Australian Research Centre in Sex, Health and Society Page 16 of 20

17 Table 9. Mean Scores for Barriers to HIV Testing Amongst Those Never Tested (n=48) Barriers to testing for HIV Mean Score # Needing to tell my sexual partners if I am diagnosed with HIV 2.91 Worry that testing would become known to other people 2.83 Finding a doctor 2.66 Knowing where to go 2.74 Embarrassment about testing 2.63 Needing to have a discussion with the doctor after getting my test results 2.57 Getting an appointment 2.48 Having to return for test result 2.49 Finding time to get tested 2.36 Needing to have a discussion with the doctor before getting tested 2.30 Cost of testing 2.30 Having to test too often 2.24 # For Likert scale where 1 = no effect and 5 = very much impacted on ability to undergo a HIV test. Barriers to HIV testing: Data from the Check-It-Out Evaluation Overall, the researchers found that the barriers identified during the Check-It-Out campaign evaluation agreed with the known barriers to HIV testing identified in the existing literature [5]. The primary barriers to testing were fear of the consequences of testing positive, the stigma around testing and some structural barriers [5]. The stigma around testing largely related to being labelled as gay or a member of an at risk group by undergoing a HIV test [5]. Structural barriers to testing included the cost and convenience of testing, including the consultation length and how busy the clinician was seen to be [5]. A further barrier identified was generalised anxiety around HIV testing, with HIV testing deemed to be associated with a great deal of cultural and emotional baggage for gay men [5]. A lack of information about HIV, its prevention, diagnosis and treatment were not found to be barriers to undergoing HIV testing [5]. The Australian Research Centre in Sex, Health and Society Page 17 of 20

18 DISCUSSION & RECOMMENDATIONS Of those respondents who have undergone HIV testing since the National HIV Testing Policy 2006 came into effect, a high proportion of respondents to the HIV Futures Six Survey report undergoing a detailed post-test discussion (76.3%); while, a significantly lower proportion report undergoing a detailed pre-test discussion (25.7%). The reasons for the low reported incidence of a pre-test discussion are unknown. Further investigation of the reasons for not engaging in a detailed pre-test discussion prior to HIV testing is warranted. It is possible that factors such as provider burden, a high level of client knowledge about testing and providers not wanting to overwhelm clients with too much information may explain the low reported incidence of a pre-test discussion. Any investigation of the reasons for not engaging in a pretest discussion and the content of the discussion should consider the perspective of the client as well as the provider and should also incorporate an assessment of whether the client was satisfied with the level of information provided, even if they did not report engaging in a detailed pre-test discussion. The most commonly reported reasons for undergoing HIV testing were becoming ill, routine health screening and a particular risk episode. Over time, the proportion of respondents reporting testing due to becoming ill or as part of routine health screening has increased. Some differences were also observed in the reasons for testing according to the main subpopulations of PLHIV (MSM, heterosexual men and women). Barriers to HIV testing included social, psychological and some structural barriers. Social barriers included needing to tell sexual partners of their status and fear of others finding out about the testing. Psychological barriers included the perceived consequences of testing positive and generalised anxiety and embarrassment about testing. Structural barriers included having to return for the test result, finding time to get tested and knowing where to go to get tested. Continuing to address the stigma associated with HIV and being deemed an at risk population, and the convenience of HIV testing are likely to be important for ensuring high HIV testing rates. In particular, rapid HIV testing is likely to overcome some of the structural barriers associated with HIV testing. The current guidelines do to some extent address the convenience of testing by allowing flexibility in how the post-test discussion is conducted for HIV-negative individuals. Continuing to provide information about the management of HIV infection to the general population is also likely to be important for addressing psychological barriers to HIV testing. The Australian Research Centre in Sex, Health and Society Page 18 of 20

19 Overall, the guidelines for pre-test and post-test discussions set out in the National HIV Testing Policy 2006 are reasonable and in our opinion necessary for ensuring those undergoing testing have a clear understanding of the risks of HIV transmission, how HIV testing works and their rights in undergoing testing and particularly if they test positive. The Australian Research Centre in Sex, Health and Society Page 19 of 20

20 REFERENCES 1. Department of Health and Ageing, National HIV Testing Policy , Department of Health and Ageing, Commonwealth of Australia. 2. ANCARD/IGCARD, HIV Testing Policy. 1998, Australian National Council on AIDS and Related Diseases/Intergovernmental Committee on AIDS and Related Diseases. 3. Grierson, J.G., et al., HIV Futures 6: Making Positive Lives Count, in Monograph Series Number , The Australian Research Centre in Sex, Health and Society, Latrobe University: Melbourne, Australia. 4. National Centre in HIV Epidemiology and Clinical Research, HIV/AIDS, viral hepatitis and sexually transmissible infections in Australia Annual Surveillance Report , National Centre in HIV Epidemiology and Clinical Research, The University of New South Wales Sydney, NSW. 5. Grierson, J. and R. Thorpe, Social Research Report on the Check-It-Out Campaign. 2006, Australian Research Centre in Sex, Health and Society, La Trobe University. The Australian Research Centre in Sex, Health and Society Page 20 of 20

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