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. 2021 Oct 3;24:101580. doi: 10.1016/j.pmedr.2021.101580

Brief report: HIV-related healthcare stigma/discrimination and unmet needs among persons living with HIV in England and Wales

John Mark Wiginton a,, Jessica L Maksut b, Sarah M Murray c, Jura L Augustinavicius c, Meaghan Kall d, Valerie Delpech d,1, Stefan D Baral b,1
PMCID: PMC8683854  PMID: 34976641

Abstract

We characterized the prevalence of, and estimated associations between, (1) HIV-related healthcare stigma/discrimination and (2) unmet social, mental, and chronic condition healthcare needs among persons living with HIV (PLHIV) in England and Wales. We used data from Positive Voices 2017, a national, cross-sectional probability survey of PLHIV in England and Wales, in which N = 3,475 PLHIV provided complete data on demographic characteristics (control variables; age, ethnicity, gender, sexual identity), HIV-related healthcare stigma/discrimination (exposures; treated differently from other patients, care was refused/delayed, worried about being treated differently, avoided seeking needed care, all due to HIV status), and unmet needs (outcomes; unmet peer support, psychological care, management of chronic health conditions, and isolation help needs). Modified Poisson regression models with log links and robust variance estimators were used to produce prevalence ratios and 95% confidence intervals for unadjusted and adjusted associations between demographic characteristics, HIV-related healthcare stigma/discrimination (individual items and total scale score), and unmet needs variables. Two in five participants (40%) endorsed at least one HIV-related healthcare stigma/discrimination item; and 474 (14%), 428 (12%), 459 (13%), and 501 (14%) reported an unmet peer support, psychological care, chronic health condition management, and isolation help need, respectively. Each HIV-related healthcare stigma/discrimination item and the summed scale score were significantly, positively associated with all four unmet needs variables in unadjusted and adjusted models. Trainings for all healthcare workers in HIV-competent, non-stigmatizing care, as well as the development of engagement and delivery approaches for psychosocial care for PLHIV, are needed.

Keywords: Persons living with HIV, England, Wales, HIV-related healthcare stigma/ discrimination, Healthcare, Unmet needs

1. Introduction

In 2016, the United Nations approved the 2030 95–95–95 targets: that at least 95% of all persons living with HIV (PLHIV) are diagnosed, 95% of those diagnosed are taking antiretroviral treatment (ART), and 95% of those on ART are virologically suppressed (England, 2030, London – The first global city to exceed UNAIDS 95-95-95 ambitions, 2018). London was the first city to announce – in November 2018 – that it had surpassed these targets at 95–98-97 (The Lancet HIV, 2019). Despite these important gains, HIV-related stigma/discrimination affect key health and health-related outcomes for PLHIV in the United Kingdom (UK), including limiting treatment and care access (Kall et al., 2020), disclosure of HIV status (Daskalopoulou et al., 2017 Jan 1, Anderson et al., 2008 Sep 1, Ndirangu and Evans, 2009 Apr 1), support-seeking behaviors (Stackpool-Moore et al., 2013), and general well-being (Anderson et al., 2009).

While HIV-related stigma can be experienced as mistreatment, rejection, discrimination, and violence (i.e., enacted stigma), it also manifests as perceptions or fears of being mistreated, rejected, or discriminated against due to one’s HIV positive status (i.e., perceived and anticipated stigmas) or as the internalization of negative beliefs associated with an HIV positive status (i.e., internalized stigma) (Stangl et al., 2019). For PLHIV in the UK, few studies have examined how perceived and anticipated HIV-related stigmas – not just enacted stigma or discrimination – related to the healthcare setting have affected PLHIV’s ability to access and benefit from needed ancillary services, including psychosocial care (e.g., therapeutic care, coping resources). This may be especially important for individuals with high HIV-related internalized stigma, as it is known to adversely impact interpersonal outcomes and has important implications for psychological and physical health (Overstreet et al., 2013).

Thus, while the UK has met UNAIDS’ HIV treatment-specific targets, it is unclear to what extent HIV-related healthcare stigma/discrimination may continue to impact the broader health needs of PLHIV. Understanding correlates of social, mental, and physical health needs for PLHIV is especially important given the disproportionately high prevalence of various social, psychological, and chronic condition-related problems in this group (Gourlay et al., 2017, Hibbert et al., 2018), their high cost, and their known associations with key HIV treatment outcomes (Remien et al., 2019). Given that HIV-related healthcare stigma/discrimination has the potential to impede psychosocial support-seeking behaviors (Burnham et al., 2016), in this report we document the prevalence of unmet peer support, psychological care, management of chronic health condition, and isolation help needs in a cross-sectional sample of PLHIV in England and Wales, and assess associations between four individual HIV-related healthcare stigma/discrimination variables (as well as a summed scale score of these variables) and the abovementioned four unmet needs.

2. Methods

Data were drawn from Positive Voices 2017, a national cross-sectional probability survey of PLHIV aged 18 years and older accessing HIV care services in England and Wales (Kall et al., 2020). Individuals were randomly selected through Public Health England’s national HIV/AIDS surveillance platform and invited in person (i.e., in clinics) to participate through local HIV clinics between January and September 2017. Eligible individuals were 18 or older, residents of England or Wales, attended one of these clinics in the prior year, and could complete a survey in English (with assistance if needed). A total of N = 4,422 participants (from a total of 8,608 contacted, resulting in a 51.4% response rate) from 73 HIV clinics in England and Wales self-completed the omnibus-style survey on paper or online, representing approximately 1 in 20 (5.3%) PLHIV in England and Wales.

The survey included four HIV-related healthcare stigma/discrimination items from the HIV-related Healthcare Stigma/Discrimination scale from the 2015 HIV Stigma Index (Stigma Survey, 2015). The same question – “Because of your HIV status, have you ever experienced any of the following in a healthcare setting?” – was applied to four scenarios: “been treated differently from other patients” (enacted stigma), “felt that you were refused healthcare or delayed a treatment or medical procedure” (perceived stigma), “been worried that you would be treated differently than other patients” (anticipated stigma), and “avoided seeking healthcare when you needed it” (anticipated stigma). Response options included “no,” “yes, in the past year,” and “yes, more than a year ago.” Both affirmative responses were collapsed, as we were interested in links between stigma/discrimination and unmet need regardless of recency of stigma/discrimination exposure. In addition to examining each stigma/discrimination item individually, we created an overall stigma/discrimination score by summing all affirmative responses for a possible total score that ranged from 0 to 4 (α = 0.77).

The survey also included four items to assess unmet needs related to peer support, psychological care, chronic health condition management, and isolation help. Peer support refers to the sharing of knowledge and skills, practical assistance, and connecting individuals with resources, opportunities, and communities of support and other PLHIV; psychological care includes psychotherapeutic care; chronic health condition management includes monitoring and coordinating treatment and patient education for chronic health conditions; and isolation help refers to the provision of social support and socialization. Response options included “I did not need this,” “I have received this,” “I needed this, but could not get it,” and “I needed this, but did not try to get it.” The former two response options were collapsed and coded “0” for “no unmet need”; the latter two response options were collapsed and coded “1” for “unmet need.”

Modified Poisson regression models with log links and robust variance estimators were used to produce prevalence ratios (PR) and 95% confidence intervals (CI) for associations between demographic characteristics, HIV-related healthcare stigma/discrimination, and unmet needs. Each of the four HIV-related healthcare stigma/discrimination items were treated as exposures in separate models, as was the overall HIV-related Healthcare Stigma/Discrimination scale score. Bivariate associations between each of the individual four unmet needs variables and each of the individual HIV-related healthcare stigma/discrimination items, as well as the overall scale score, were first estimated without covariates (i.e., unadjusted). For bivariate associations significant at the p < 0.10 level, multivariable models were constructed with the inclusion of covariates (age, ethnicity, gender, sexual identity) to yield adjusted associations between each stigma/discrimination item and unmet need outcome. Covariates for the adjusted models were included if they were associated with a given unmet need outcome at the p < 0.10 level. Significance for the adjusted models was set at p < 0.05. Analyses were performed in Stata 15.1. Ethical review was completed by the Health Research Authority and the London Harrow NHS Research Ethics Committee (Project ID 13/LO/0279). The current secondary analysis of deidentified data was considered exempt from review by the Johns Hopkins University Institutional Review Board.

3. Results

Of the 4,422 PLHIV who completed the survey, 4 were removed during data-cleaning due to substantial missingness on key demographic variables. Of the 4,418 observations in the full sample, 3,475 (78.7%) were retained as complete cases in the present analysis. The largest proportions of individuals were aged 45–54 years (35.3%), white British/Irish ethnicity (54.7%), cisgender male (75.3%), and identified as gay or homosexual (55.3%). Two in five participants (40.3%) endorsed at least one stigma/discrimination item, and nearly one in four (23.5%) endorsed two or more. The mean stigma/discrimination scale score was 0.81 (standard deviation [SD] = 1.19). Of the 3,475 participants, 474 (13.6%) reported an unmet peer support need, 428 (12.3%) reported an unmet psychological need, 459 (13.2%) reported an unmet chronic health condition management need, and 501 (14.4%) reported an unmet isolation help need (Table 1).

Table 1.

Demographic characteristics and HIV-related healthcare stigma/discrimination endorsement among persons living with HIV in England and Wales, overall and by unmet need outcome variable, 2017 (N = 3,475).

Characteristics Total Unmet Peer Support
Unmet Psychological Care
Unmet Chronic Health Condition Management
Unmet Isolation Help
Yes
n = 474
No
n = 3,001
Yes
n = 428
No
n = 3,047
Yes
n = 459
No
n = 3,016
Yes
n = 501
No
n = 2,974
Age, n (%)
18–34 408 (11.7) 74 (18.1) 334 (81.9) 74 (18.1) 334 (81.9) 59 (14.5) 349 (85.5) 71 (17.4) 337 (82.6)
35–44 931 (26.8) 163 (17.5) 768 (82.5) 136 (14.6) 795 (85.4) 156 (16.8) 775 (83.2) 150 (16.1) 781 (83.9)
45–54 1,228 (35.3) 152 (12.4) 1,076 (87.6) 137 (11.2) 1,091 (88.8) 155 (12.6) 1,073 (87.4) 176 (14.3) 1,052 (85.7)
55–64 657 (18.9) 75 (11.4) 582 (88.6) 64 (9.7) 593 (90.3) 74 (11.3) 583 (88.7) 79 (12.0) 578 (88.0)
65+ 251 (7.2) 10 (4.0) 241 (96.0) 17 (6.8) 234 (93.2) 15 (6.0) 236 (94.0) 25 (10.0) 226 (90.0)
Ethnicity, n (%)
White British or Irish 1,901 (54.7) 230 (12.1) 1,671 (87.9) 243 (12.8) 1,658 (87.2) 200 (10.5) 1,701 (89.5) 260 (13.7) 1,641 (86.3)
Other white background 363 (10.5) 62 (17.1) 301 (82.9) 63 (17.4) 300 (82.6) 57 (15.7) 306 (84.3) 54 (14.9) 309 (85.1)
Black African 777 (22.4) 114 (14.7) 663 (85.3) 64 (8.2) 713 (91.8) 135 (17.4) 642 (82.6) 114 (14.7) 663 (85.3)
Other minority background 434 (12.5) 68 (15.7) 366 (84.3) 58 (13.4) 376 (86.6) 67 (15.4) 367 (84.6) 73 (16.8) 361 (83.2)
Gender, n (%)                  
Cisgender man 2,618 (75.3) 352 (13.5) 2,266 (86.6) 348 (13.3) 2,270 (86.7) 332 (12.7) 2,286 (87.3) 380 (14.5) 2,238 (85.5)
Cisgender woman 827 (23.8) 116 (14.0) 711 (86.0) 76 (9.2) 751 (90.8) 124 (15.0) 703 (85.0) 117 (14.2) 710 (85.9)
Transgender or nonbinary 30 (0.9) 6 (20.0) 24 (80.0) 4 (13.3) 26 (86.7) 3 (10.0) 27 (90.0) 4 (13.3) 26 (86.7)
Sexual Identity, n (%)                  
Gay/homosexual 1,920 (55.3) 259 (13.5) 1,661 (86.5) 283 (14.7) 1,637 (85.3) 237 (12.3) 1,683 (87.7) 286 (14.9) 1,634 (85.1)
Straight/heterosexual 1,316 (37.9) 178 (13.5) 1,138 (86.5) 119 (9.0) 1,197 (91.0) 191 (14.5) 1,125 (85.5) 174 (13.2) 1,142 (86.8)
Bisexual 148 (4.3) 22 (14.9) 126 (85.1) 16 (10.8) 132 (89.2) 17 (11.5) 131 (88.5) 21 (14.2) 127 (85.8)
Asexual or other identity 91 (2.6) 15 (16.5) 76 (83.5) 10 (11.0) 81 (89.0) 14 (15.4) 77 (84.6) 20 (22.0) 71 (78.0)
HIV-related healthcare stigma/discrimination, n (%)
Treated differently 650 (18.7) 152 (23.4) 498 (76.6) 151 (23.2) 499 (76.8) 155 (23.9) 495 (76.2) 173 (26.6) 477 (73.4)
Care refused or delayed 367 (10.6) 98 (26.7) 269 (73.3) 96 (26.2) 271 (73.8) 110 (30.0) 257 (70.0) 122 (33.2) 245 (66.8)
Worried/treated differently 1,226 (35.3) 248 (20.2) 978 (79.8) 234 (19.1) 992 (80.9) 252 (20.6) 974 (79.5) 280 (22.8) 946 (77.2)
Avoided needed care 577 (16.6) 151 (26.2) 426 (73.8) 155 (26.9) 422 (73.1) 153 (26.5) 424 (73.5) 178 (30.9) 399 (69.2)

Unadjusted models revealed that each individual stigma/discrimination item and the summed stigma scale score were significantly, positively associated with each unmet need. When adjusting for covariates, having been treated differently from other patients remained associated with unmet peer support (aPR = 2.00; 95% CI = 1.68, 2.39), psychological care (aPR = 2.32; 95% CI = 1.94, 2.78), chronic health condition management (aPR = 2.24; 95% CI = 1.88, 2.66), and isolation help needs (aPR = 2.28; 95% CI = 1.93, 2.68). Having felt that healthcare was refused/delayed remained associated with unmet peer support (aPR = 2.16; 95% CI = 1.78, 2.63), psychological care (aPR = 2.39; 95% CI = 1.95, 2.93), chronic health condition management (aPR = 2.71; 95% CI = 2.25, 3.27), and isolation help needs (aPR = 2.70; 95% CI = 2.26, 3.21). Having been worried about being treated differently than other patients remained associated with unmet peer support (aPR = 1.91; 95% CI = 1.61, 2.26), psychological care (aPR = 2.12; 95% CI = 1.77, 2.54), chronic health condition management (aPR = 2.20; 95% CI = 1.85, 2.61), and isolation help needs (aPR = 2.28; 95% CI = 1.93, 2.68). Having avoided seeking necessary healthcare remained associated with unmet peer support (aPR = 2.19; 95% CI = 1.84, 2.61), psychological care (aPR = 2.72; 95% CI = 2.27, 3.25), chronic health condition management (aPR = 2.42; 95% CI = 2.03, 2.88), and isolation help needs (aPR = 2.68; 95% CI = 2.27, 3.15). A one-unit increase in stigma/discrimination remained associated with unmet peer support (aPR = 1.35; 95% CI = 1.28, 1.42), psychological care (aPR = 1.43; 95% CI = 1.35, 1.52), chronic health condition management (aPR = 1.43; 95% CI = 1.35, 1.51), and isolation help needs (aPR = 1.45; 95% CI = 1.38, 1.52) (Table 2).

Table 2.

Demographic and HIV-related healthcare stigma/discrimination correlates of unmet needs among persons living with HIV in England and Wales, 2017 (N = 3,475).

Unmet Peer Support
Unmet Psychological Care
Unmet Chronic Health Condition Management
Unmet Isolation Help
Characteristics PR
(95% CI)
aPR
(95% CI)*
PR
(95% CI)
aPR
(95% CI)≠
PR
(95% CI)
aPR
(95% CI)¥
PR
(95% CI)
aPR
(95% CI)£
Age
18–34
35–44
45–54
55–64
65+

ref
0.97 (0.75, 1.24)
0.68 (0.53, 0.88)
0.63 (0.47, 0.85)
0.22 (0.12, 0.42)

ref
0.81 (0.62, 1.04)
0.62 (0.47, 0.80)
0.54 (0.39, 0.73)
0.37 (0.23, 0.62)

ref
1.16 (0.88, 1.53)
0.87 (0.66, 1.15)
0.78 (0.57, 1.07)
0.41 (0.24, 0.71)

ref
0.93 (0.72, 1.20)
0.82 (0.64, 1.06)
0.69 (0.51, 0.93)
0.57 (0.37, 0.88)
Ethnicity
White British or Irish
Other white background
Black African
Other minority background
Gender
Cisgender man
Cisgender woman
Transgender or nonbinary

ref
1.41 (1.09, 1.83)
1.21 (0.98, 1.49)
1.30 (1.01, 1.66)

ref
1.04 (0.86, 1.27)
1.49 (0.72, 3.06)

ref
1.36 (1.05, 1.75)
0.64 (0.50, 0.84)
1.05 (0.80, 1.37)

ref
0.69 (0.55, 0.87)
1.00 (0.40, 2.51)

ref
1.49 (1.14, 1.96)
1.65 (1.35, 2.02)
1.47 (1.14, 1.90)

ref
1.18 (0.98, 1.43)
0.79 (0.27, 2.32)

ref
1.09 (0.83, 1.43)
1.07 (0.87, 1.32)
1.23 (0.97, 1.56)

ref
0.97 (0.80, 1.18)
0.92 (0.37, 2.30)
Sexual identity
Gay or homosexual
Straight or heterosexual
Bisexual
Asexual or other identity

1.00 (0.84, 1.19)
ref
1.10 (0.73, 1.65)
1.22 (0.75, 1.97)

1.63 (1.33, 2.00)
ref
1.20 (0.73, 1.96)
1.22 (0.66, 2.24)

0.85 (0.71, 1.02)
ref
0.79 (0.50, 1.26)
1.06 (0.64, 1.75)

1.13 (0.95, 1.34)
ref
1.07 (0.71, 1.63)
1.67 (1.10, 2.51)
HIV-related healthcare stigma/discrimination
Treated differently 2.05 (1.73, 2.44) 2.00 (1.68, 2.39) 2.37 (1.98, 2.83) 2.32 (1.94, 2.78) 2.22 (1.86, 2.64) 2.24 (1.88, 2.66) 2.29 (1.95, 2.70) 2.28 (1.93, 2.68)
Care refused/delayed 2.21 (1.82, 2.68) 2.16 (1.78, 2.63) 2.45 (2.01, 2.99) 2.39 (1.95, 2.93) 2.67 (2.22, 3.21) 2.71 (2.25, 3.27) 2.73 (2.29, 3.24) 2.70 (2.26, 3.21)
Worried/treated differently 2.01 (1.70, 2.38) 1.91 (1.61, 2.26) 2.21 (1.85, 2.64) 2.12 (1.77, 2.54) 2.23 (1.88, 2.65) 2.20 (1.85, 2.61) 2.32 (1.98, 2.73) 2.28 (1.93, 2.68)
Avoided needed care 2.35 (1.98, 2.79) 2.19 (1.84, 2.61) 2.85 (2.39, 3.40) 2.72 (2.27, 3.25) 2.51 (2.11, 2.98) 2.42 (2.03, 2.88) 2.77 (2.36, 3.25) 2.68 (2.27, 3.15)
Total scale score 1.37 (1.30, 1.44) 1.35 (1.28, 1.42) 1.44 (1.37, 1.52) 1.43 (1.35, 1.52) 1.43 (1.35, 1.50) 1.43 (1.35, 1.51) 1.45 (1.38, 1.53) 1.45 (1.38, 1.52)

*Unmet peer support need demographic covariates: age, ethnicity.

≠Unmet psychological care need demographic covariates: age, ethnicity, gender, sexual identity.

¥Unmet chronic health condition management need demographic covariates: age, ethnicity, gender, sexual identity.

£Unmet isolation help need demographic covariates: age, ethnicity, sexual identity.

A sensitivity analysis using all available data found parameter estimates comparable to those when using complete cases, with minor decreases in magnitude being observed for unmet peer support need, and minor increases in magnitude being observed for other unmet needs. Inferences were unchanged (Supplemental Tables 1-2).

4. Discussion

Roughly 9 in 10 of all PLHIV in the UK have been medically diagnosed with HIV and are virally suppressed due to effective treatment and care (Public Health England, 2020). Despite this, our study shows that HIV-related stigma and discrimination persists in the healthcare setting in England and Wales, and that PLHIV in these contexts experience unmet social, mental, and physical health needs, all of which may affect quality of life and HIV-treatment outcomes. We observed strong, independent associations between HIV-related healthcare stigma and discrimination and these unmet needs, suggesting that such stigma and discrimination may in fact underpin these needs, or at the very least exacerbate them, though additional research to establish causality and identify the mechanisms linking these associations is needed. Moreover, addressing these unmet needs is key to promoting the overall health and well-being of PLHIV (Flickinger et al., 2017).

Prior literature suggests that healthcare stigma reduction strategies should be multilevel in nature and involve all staff members, not just health professionals, in training and crafting policy; use participatory methods and involve PLHIV in the development of training; and periodically monitor stigma among health workers (Nyblade et al., 2009). Arguably, additional, structural-level changes that would make ancillary services which provide peer and isolation support, psychological care, and chronic condition management available where HIV treatment and care are also offered, and ensuring those environments are stigma-free, may help to eliminate unmet needs in these areas.

Unadjusted models demonstrated that each demographic characteristic was associated with multiple unmet needs. Notably, each unmet need was more common among the younger age groups (18–34 years, 35–44 years). Prior research has shown that peer support is particularly important for young PLHIV, improving mental health and self-esteem, improving status disclosure and retention in care, and increasing ART-adherence (Wogrin et al., 2021). In other words, intervening on unmet peer support needs could indirectly impact each of the other unmet needs for young PLHIV. Future work with young PLHIV might consider strategies to link individuals in need of peer support to in-person or virtual HIV-related support groups and peer programs. Additionally, the other unmet needs tended to be more common among ethnic, sexual, and/or gender minorities, illustrating how intersecting stigmas may disadvantage multiply marginalized individuals, and underscoring the need for intersectional approaches to research and intervention development.

5. Limitations

Participants may have underreported HIV-related healthcare stigma/discrimination or unmet needs due to the sensitive nature of these topics. Second, causal inferences between HIV-related healthcare stigma/discrimination and unmet care needs are not possible as the data are cross-sectional. Third, other marginalized identities may further shape these associations but were unexamined due to limited variability or lack of assessment (e.g., gender identity, English proficiency). Fourth, limiting eligibility to English-speakers may have deterred enrollment of immigrant communities and precludes an assessment of stigma in these groups. Finally, smaller clinics were not included in this study; therefore, our results may not be generalizable to these settings.

6. Conclusion

These results illustrate harmful associations between HIV-related healthcare stigma/discrimination and unmet care needs among PLHIV in England and Wales, such that HIV-related healthcare stigma/discrimination may serve as barriers to accessing needed ancillary services. While HIV stigma mitigation strategies are available (Fast Track Cities, 2020), they may not fully address HIV-related healthcare stigma/discrimination not directly related to HIV treatment. Future training for healthcare workers is needed, including healthcare workers beyond the HIV/sexual health specialty, in HIV-competent, non-stigmatizing care, as is the development of engagement and delivery approaches for psychosocial care for PLHIV in England and Wales. We recommend that future research efforts in this area explore the impacts of other forms of stigma, including internalized stigma, stigma in other settings, and geographic differences in stigma burden.

Declaration of Competing Interest

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Acknowledgements

This study was funded by the National Institutes of Health, including support from the National Institute of Mental Health (R01MH110358). Additionally, JLM received research support from the National Institute of Allergy and Infectious Diseases (T32AI102623). The Positive Voices survey was supported by funding from Public Health England and research grants from Gilead Sciences Inc. The funders had no role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript. The authors have no conflicts of interest to report.

Footnotes

Appendix A

Supplementary data to this article can be found online at https://doi.org/10.1016/j.pmedr.2021.101580.

Appendix A. Supplementary data

The following are the Supplementary data to this article:

Supplementary data 1
mmc1.docx (21.1KB, docx)

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