HIV in the UK: Changes and Challenges; Actions and Answers The People Living With HIV Stigma Survey UK 2015 Scotland STIGMA SURVEY UK 2015
SCOTLAND The landscape for people living with HIV in the United Kingdom (UK) is dramatically different from what it was ten or twenty years ago. Advances in treatment mean the life expectancy of HIV positive people can be the same as that of the general population. Living with HIV in the age of undetectability and reduced risk of transmission should mean a better quality of life for people living with HIV. 1 However, despite some shifts in public attitudes, a considerable number of people in the UK still hold stigmatising attitudes towards people living with HIV. 2 Consequently, stigma remains a significant obstacle for many people living well with diagnosed HIV. The People Living with HIV Stigma Survey aimed to provide an evidence base of the HIV-related stigma and discrimination experienced by people living with HIV in the UK. Building on the experience of the 2009 People living with HIV Stigma Index, the 2015 survey was a collaborative cross sector community-led initiative that captured participants feelings and experiences with partners, family and friends, at work, in faith and in healthcare settings related to their HIV within the previous 12 months. 3 1576 participants were recruited from community organisations and HIV clinics throughout the UK. This report is one of eleven report cards covering key findings of the UK Stigma Survey 2015. The reports were developed by community for community. We thank Public Health England for assistance in the data collection and analyses of the survey. All of the report cards and survey methodology can be downloaded from the UK Stigma Survey website. This report card focuses on the experiences of the 106 participants living in Scotland. HIV-related stigma is commonly understood as a process of devaluation and may constitute: Self or internalised stigma: the acceptance of negative self-beliefs associated with being HIV positive Anticipated or perceived stigma: the awareness of negative beliefs and expectation of negative treatment amongst people living with HIV Discrimination: the negative and devaluing treatment of people due to their status. These may fall within the purview of the law. 4 These different types of HIV-related stigma were measured in a number of ways in the survey. Participants were asked about negative and positive feelings in relation to their status to assess levels of self or internalised stigma. They were also asked if they had worried about or avoided situations in relation to their HIV to assess levels of anticipated or perceived stigma and, finally, whether they had experienced different treatment in relation to their HIV to capture discriminatory treatment. With the understanding that a person s experience of stigma may be different in their personal, social and working life, participants were asked to describe their experiences of stigma with partners, family and friends, and in their workplaces, faith communities and healthcare settings over the past 12 months. 1 Undetectability means a person s viral load, or the amount of virus in the blood of an HIV+ person, is lower than the amount a blood test can detect. A person with undetectable virus is extremely unlikely to transmit the virus to another person. See: http://www.aidsmap.com/noone-with-an-undetectable-viral-load-gay-or-heterosexual-transmits-hiv-in-first-two-years-of-partner-study/page/2832748 2 National AIDS Trust. HIV Public Knowledge and Attitudes, 2014 http://www.nat.org.uk/media/files/pdf20documents/mori_2014_report_final.pdf 3 In order to further explore how people living with HIV experience stigma, 40 semi-structured interviews were conducted with a representative sample by a community researcher. Many of the quotations used in the report cards come from these interviews. 4 Strive. Measuring HIV Stigma and Discrimination, 2012. Available at: http://strive.lshtm.ac.uk/system/files/attachments/strive_stigma20brief-a4.pdf (Accessed February 4th 2016). 2/11
Summary of findings in this report Most people in Scotland had disclosed their HIV status to someone, and generally felt well supported by those aware of their status All participants with one main partner in the last 12 months had shared their status with their partner Anticipated stigma was most commonly reported, with many participants worrying about sexual rejection and treatment in the workplace, and avoiding sexual encounters due to their status in the last year Over half felt positive about life and in control of their health, yet half reported feelings of internalised stigma in the last year Over half felt supported in primary care, yet a third had not disclosed to their dentist. Many feared being treated differently in primary care and some avoided care when required. Over half had sought HIV-related support in the last year, a fifth from a local HIV support organisation 1. Who took part? 106 (7) of the 1576 survey participants lived in Scotland. Most participants in Scotland were men (7, n=78), and 4 people identified as trans. Over half (56, n=60) of male participants identified as men who have sex with men (MSM) and 77 (n=71) as white British or Irish. 91 (n=21) of women identified as heterosexual and 7 (n=17) as Black, Asian or minority ethnic (BAME). Half of all participants in Scotland were between ages 35 and 50. 4 people had injected recreational or performance enhancing drugs, and 1 person had been paid for sex, in the last 12 months. 5 2 2 5 ETHNICITY 8 White British / Irish Other white (not British/Irish) Black/African/Caribbean Mixed white, black, Asian Asian Any other 32 AGE GROUP 1 52 24 and under 25-34 35-50 Over 50 Figure 1. Demographics of participants HIV testing, diagnosis and treatment The majority of participants in Scotland had been diagnosed with HIV in the UK (n=98); were diagnosed in the last year. Of those diagnosed in the past 5 years in the UK, most (n=22, 67) reported being tested for HIV voluntarily, while 6 participants felt they were made or pressured to take a test (Figure 3). One reason given for this was: being tested in post-operation intensive care. 100 participants (9) in Scotland were currently on antiretroviral treatment (ART). This was similar by gender and ethnicity, and to the overall population accessing HIV care in Scotland (92). 3 men, 2 women and 1 trans person reported they were not on ART; 4 out of these 6 were diagnosed more than a year ago. 5 More demographic information is available in the appendix. 3/11
In the last year 2010-2014 2005-2009 1995-2004 25 2 2 16 12 Decision to test for HIV among those diagnosed in the UK in the last 5 years 72 Yes, I took the decision myself to be tested (i.e. it was voluntary) I was made or pressured to take a test I was tested without my knowledge Before 1995 15 No response 1 Figure 2. Time since diagnosis in the UK Figure 3. Decision to test for HIV among participants diagnosed in the UK in the last 5 years Changes and challenges 2. Telling others The majority of participants in Scotland (9, n=100) reported that at least one member of their family or friend group, a partner, or someone in their workplace or faith community was aware of their status. Generally, participants felt well supported upon telling someone in their social or professional circle. Almost half (n=46) felt empowered upon telling someone. I just decided to tell him straight away, before we even went on a date. I told him because I wanted him to have that choice and it didn t make any difference, as it turned out, and we re still together. I feel very fortunate he s been a tremendous support to me over the last two years Woman, 36 years old, white ethnicity and living in Glasgow, diagnosed 2014 Partners Most (69, n=74) reported they were sexually active in the last 12 months. Most participants also reported that their partners were aware of their status (all people with one main partner reported their partner was aware); those with only a main partner felt most supported (Figure 4). Family and friends Two thirds of participants (n=74) reported at least one member of their family was aware of their status and three in five (6, n=48) felt well supported (Figure 5). More participants reported that at least one friend was aware of their status (n=82), and two thirds (n=55) felt well supported (Figure 6). Percentage of people Percentage of partners aware Percentage reporting good support Sexually active with only main sexual partner 1 Main and others Multiple 31 25 71 60 6 5 100 82 Figure 4. Awareness of HIV status and support in sexual relationships You just really want to stick to someone who really understands what you are going through and where you are coming from Woman, 60 years old, black African ethnicity and living in Glasgow, diagnosed 2003 4/11
6 All Almost all Some None No response 45 62 65 36 2 21 1 15 17 21 2 2 Awareness among family Awareness among friends Figure 5. Awareness of HIV status and support among participants family members Figure 6. Awareness of HIV status and support among participants friends Workplace All Almost all Some None 6 Half of the 63 participants working at the time of the survey reported that someone at work was aware of their status (n=31). Among these, the majority felt well supported (n=21). 13 (12) had decided not to apply for or turned down employment or a promotion in the last 12 months due to their status. 6 6 37 51 Awareness among employers and / or co-workers Figure 7. Awareness of status and supportin the workplace Faith A quarter (8/33) of participants in Scotland who had ever been active in a religious community reported that someone in their faith group was aware of their status; half (4) of these reported feeling supported upon telling someone. Three of the eleven participants active in a faith group in the last year reported someone in the community was aware, and 2 individuals felt supported. Ever active in faith community Active in the last 12 months 10 2 27 31 50 67 of people Aware Figure 8. Awareness of status and support in faith settings Pressure to tell others Not all participants in Scotland felt in control of disclosing their status, with some reporting they had felt pressure from family, friends and co-workers to tell others about their HIV in the last 12 months. Family 1 Friends Workplace 7 Figure 9. Pressure to tell others in the last 12 months 5/11
3. Experiences of stigma and discrimination Felt and experienced stigma are affected by many factors, including gender, sexuality, ethnicity and socioeconomic position, along with HIV status. The survey attempted to examine these layers of stigma and measure to what extent instances of worry, avoidance and discrimination could be attributed to participants HIV status. Participants worried primarily about sexual rejection (29), being gossiped about (2) and being excluded from social gatherings (19) due to their HIV. A third (3) had avoided sexual encounters in the last 12 months due to their status. One in seven had experienced sexual rejection in the last year due to their status, compared to a fifth of participants in the UK overall. In the last 12 months... of all who report experience is due to HIV of all who answered yes Have you worried about: Have you: Have you experienced: Gossip Sexual rejection Excluded - social gatherings Excluded - family gatherings Verbal harassment Workplace treatment Job security Physical assault Avoided sex Avoided social gatherings Avoided family gatherings Avoided employment / promotion Left a job / income source Gossip Sexual rejection Verbal harassment Excluded - family gatherings Excluded - social gatherings Job change - consensual Lost job Been refused employment / promotion Physical assault Job change - against wishes 2 3 1 1 1 7 7 9 9 6 15 1 16 1 3 1 6 9 2 4 29 42 19 3 12 20 12 11 25 2 22 19 17 20 25 3 30 35 5 Figure 10. Worry, avoidance and discrimination in the last 12 months 6/11
4. Mental health and well being Two thirds of participants in Scotland felt positive about life (67) and as good as anyone else (6) in the last 12 months. Three out of five (60) felt in control of their health in the last year. Yet, many felt ashamed (42), guilty (39), and blamed themselves (5) in relation to their status in the last 12 months. Two in five (41) had a negative self-image in relation to their status, compared to 37 of people in the UK overall. One in five (22) reported suicidal ideation in the last year, comparable to1 of the population in the UK overall. 5. Healthcare 91 of participants in Scotland stated their GP was aware of their status, and two thirds (66) of these felt well supported. Fewer (65) reported their dentist was aware, and three in five (59) felt well supported. GP / Dentist aware No response GP / Dentist not aware 6 7 Awareness & 5 5 support in GP practice 91 66 19 7 Moderate Low None No response Awareness 30 & support in dental practice 5 65 59 22 12 Moderate Low None No response Figure 11. Awareness and support in GP practice Figure 12. Awareness and support in dental practice Nevertheless, a third worried about being treated differently to other patients at their GP and dentist, while 1 and 12 had avoided care in either setting respectively. Similar trends were observed in outpatient and inpatient care (Figure 13). 8 people () reported they were pressured by a healthcare worker to disclose their status to others in the last 12 months. Worried about being treated differently Avoided seeking care Felt refused or delayed treatment 31 3 1 12 10 2 20 21 7 6 GP Dental practice STI clinic Outpatient Inpatient Figure 13. Worry, avoidance and feeling refused in healthcare settings 7/11
5. HIV and the law Pressure to tell others 7 (n=7) of participants in Scotland reported being denied insurance products (e.g. health, dental, life, or job protection) in the last year. Two people (2) had been investigated by the police in relation to their HIV status. 5 out of 8 participants who reported they had been discriminated against due to their status had sought redress using the Equality Act 2010. Only 16 of participants in Scotland felt able to influence legal or rights matters affecting people living with HIV, yet a third (32) had tried to address an issue of HIV-related stigma or discrimination within their community, while almost half (46) have offered emotional support to other people living with HIV in the last 12 months. Prosecution for HIV transmission in the UK Overall, 91 of participants were aware that people have been prosecuted for recklessly transmitting HIV to a sexual partner, and one in five (1) believed that transmission of HIV should be a criminal offence; half (4) were not sure. Most (90) thought that both partners, regardless of status, are responsible for preventing the transmission of HIV. Two in five (42) reported that the risk of criminal prosecution relating to HIV transmission has influenced decisions to tell others they are positive. 7. Support and advocacy Participants were asked if they had sought support related to their HIV in the last year; more than half of participants in Scotland reported they had. One in five Scottish participants, and a third of those diagnosed in the last year, had sought support from a local organisation. Two in five (4) had not sought support of any kind. Local HIV support organisation Online Peer group NHS patient support group Local policy organisation Faith group Community group None Overall 20 20 9 17 7 1 4 Diagnosed in last year 30 1 11 1 42 Table 1. Sources of support in the last 12 months (participants could choose more than one) 8/11
Actions to address stigma and discrimination for which participants in Scotland would most like to advocate include: HIV education in schools, raising public awareness and knowledge, and providing emotional, educational and referral support to people living with HIV (Figure 14). Education in schools Raising public awareness and knowledge 5 65 Providing support (emotional, physical and referral) Advocating for evidence-based media coverage of HIV Advocating for the rights of all people living with HIV 37 36 3 Educating people living with HIV about living with HIV Advocating for and/or providing support to marginalised groups 11 19 Figure 14. Addressing stigma and discrimination for people living with HIV (participants could choose more than one) 9/11
Actions and Answers 8. Conclusions Overall, the survey findings show that stigma and discrimination continue to impact the lives of HIV positive people in Scotland today. I was diagnosed in January, and in February I went to the HIV Scotland conference Woman, 36 years old, white ethnicity and livingin Glasgow, diagnosed 2014 Most people had told someone about their HIV status, and the majority reported good levels of support from those aware of their status. However, many worried about negative treatment, and some experienced HIV-related discriminatory treatment. Findings indicate that sexual relationships are particularly difficult to navigate for people living with HIV, despite all people with one main partner reporting they had shared their status with their partner. A third feared sexual rejection and had avoided one or more sexual encounters in the last year. Knowledge of undetectability could impact highly on the stigma felt by people living with HIV in sexual relationships, and further education regarding undetectability targeted at community members and the general public is important. Many participants reported feelings of internalised stigma and had a poor self-image. As in the rest of the UK, there is a need to improve support for people living with HIV including the provision of psychological and peer support especially in the year after diagnosis. Half had sought support, a fifth from a local organisation, in the last year. Participants in Scotland believe that stigma needs to be addressed across society, with public awareness campaigns and better HIV education in schools. Efforts to promote third sector offers, emphasising interventions geared towards the most at-risk groups and factoring in e-literacy and access to care and services, could additionally improve the quality of life of PLWHIV in Scotland and the UK as a whole. 10/11
Appendix: Methodology and demographics Participants were recruited from over 120 cross-sector community organisations and 46 NHS HIV clinics throughout the UK; in Scotland, 64 participants were recruited through community organisations, and 42 through clinics. The survey was predominantly quantitative, with space for open comment after most questions where additional detail would help with clarification. The 106 participants in Scotland (7 of all) were broadly representative of the general population of people living with HIV in Scotland, which accounts for around 5 of all people living with HIV in the UK. 63 participants (59) were working at the time of the survey. Comparable to the rest of the UK, hardship was not uncommon, with a fifth (1, n=20) of participants in Scotland struggling constantly with or falling behind on financial commitments, while a third (30, n=32) had sometimes or often gone short of food in the last year. Figure 1. Regional distribution of all participants (n=1576) 37 25 SECTOR OF EMPLOYMENT AT TIME OF SURVEY 19 Private sector Public sector Voluntary sector Not currently working 41 Socioeconomic status 3 Lower SES Mid-level SES Higher SES 15 26 Figure 2. Sector of employment at time of survey (n=106) Figure 3. Socioeconomic status (n=106) Participants were grouped into 3 socio-economic status (SES) groups according to education, employment, size of residence and whether they had skimped on food or fallen behind on bills in the last 12 months. The socioeconomic status (SES) of Scottish participants was comparable to the national distribution, with 3 of people in the low SES group and 41 in the high SES group. 32 (n=33) had ever been active in a faith setting, 11 in the past 12 months; 81 (n=27) identified as Christians. 50 of participants were in a relationship at the time of the survey (Figure 4). 32 participants (30) reported no sexual partners in the last 12 months. Living with a husband, wife or partner In a relationship with a partner (not living together) In a relationship with more than one partner No relationship and/or single 1 15 35 Figure 4. Relationship status at time of survey (n=106) 49 Employment Status Percentage Employed full time 51 Employed part time 6 Casual work 2 Unemployed 15 Volunteering 1 Sick/disabled 2 Looking after home 5 Retired 10 Student Table 1. Employment status in last year (n=106) Supported by a grant from ViiV Healthcare 11/11