The HIV epidemic has been present for over four decades but stigmatisation and discrimination continue to challenge the public health sector and remain active in all cultures (Shefer et al, 2013; Marsicano et al, 2014). Women of sub-Saharan African descent continue to dominate new HIV infection rates out of all ethnicities. New diagnoses for Black women living with HIV (BWLWH) have fallen over the past 10 years but, collectively, Black women in the UK were disproportionately represented in 2021, with 42.8% Black African, 3.65% Black Caribbean and 3.14% in the category of Black other accounting for new diagnoses (UK Heath Security Agency, 2022). By the end of 2022, sub-Saharan African women accounted for 63% of all cases of HIV in eastern and southern Africa (UNAIDS, 2023).
BWLWH are affected by intersectionality. Intersectionality is a way of comprehending social relations by examining forms of discrimination that overlap (Jackson-Best and Edwards, 2018). This means acknowledging complicated social systems such as racism, sexism, class discrimination and ageism, all of which can be present at the same time in an individual's life.
In a care setting, health professionals are expected to acknowledge and prevent these societal barriers where possible and expand their knowledge to meet the patient's needs (Blackwood et al, 2019).
Therefore, an extended literature review was undertaken to explore the experiences of healthcare services for BWLWH and, consequently, how intersectionality impacts the treatment and care they receive.
Methodology
Extended literature reviews are a form of secondary research conducted using existing primary research that can contribute to evidence-based practice (Harris, 2020). They are undertaken to consolidate existing knowledge and identify gaps in that evidence to suggest where further research is required (Holland and Rees, 2010; Aveyard, 2018). The SPIDER framework (sample, phenomenon of interest, design, evaluation and research type) was used to create a focused question (Cooke et al, 2012; Amir-Behghadami, 2021): how does intersectionality impact on the quality of healthcare services for BWLWH?
Searches were undertaken on three electronic databases – CINAHL, ASSIA and Scopus – to identify relevant qualitative studies. Keywords derived from the research question and alternative synonyms were used consistently within each database. These included: Black women; African women; experiences; perception; viewpoint; opinions; healthcare; nursing; medicine; HIV; and HIV/AIDS. Boolean operators and truncations were used as appropriate to strengthen the systematic search process. Literature was selected against inclusion and exclusion criteria.
Literature from 2008 onwards was included only. In 2008, the Swiss Federal Commission released substantial evidence that supported the effectiveness of antiretroviral medication and low transmission rates, thus allowing for safe unprotected sex (Rojas Castro et al, 2012). It is recognised that this date limit could still result in a multitude of studies that focused on dated practices and issues. However, the authors felt these studies would nonetheless cover women's experiences that were relevant to the research question.
Finally, eight studies that met the criteria for the literature review were identified. These were Vyavaharkar et al (2008), Logie et al (2011), Cannon Poindexter (2013), Arrey et al (2017), Sangaramoorthy et al (2017), Brincks et al (2019), Rice et al (2020) and Filippone et al (2023).
Critical appraisal of the chosen studies was undertaken using the Holland and Rees (2010) qualitative critical appraisal tool to identify their strengths and limitations and allowing themes and commonalities to be identified.
Findings
To evaluate BWLWH's experiences of healthcare services, the findings of the eight identified articles were reviewed and the themes explored. The importance of identifying themes is highlighted by Braun and Clarke (2019); this can be done by familiarising oneself with the literature, then finding, reviewing and defining the themes within.
The main themes discussed here are discrimination, stigmatisation and racism. This article will follow the framework presented by Braun and Clarke (2019) by summarising each of the article's findings, assessing their quality and critically analysing each study against the others.
Discrimination
Rice et al (2020) used purposive sampling to investigate the quality of care received by Black and Latina women living with HIV in the USA. Findings identified that 90% (n=92) of the participants were Black, and they came from areas including Atlanta, Brooklyn, New York, Chicago and Jackson.
Twelve focus groups were created and, using a semistructured format, experiences of health care were discussed. Findings identified most participants experienced direct HIV discrimination, for example, the use of extensive personal protective equipment, such as gloves, masks and eyewear, during care. This led to negative emotional and psychological outcomes because participants felt isolated, as well as physical negative consequences as they declined care from providers. Participants' opinions suggested that indirect discrimination regarding race and culture contributed towards this behaviour, with judgement put before care and potentially impacting their health.
Both evidence of and a fear of discrimination appear to be commonalities between multiple studies. Filippone et al (2023) purposely sampled 41 Black and Latino people with HIV to engage in semistructured interviews, which were recorded. The aim was to find out why racial and ethnic inequities within the HIV care continuum persist in the USA. One participant, Wynn, expressed her fear of discrimination as she had a substance use disorder. She had experienced and feared judgemental comments such as ‘it would be better not to use’ (Filippone et al, 2023: 10) if she had consumed drugs the day before the appointment; she cancelled meetings with practitioners because of previous comments. Wynn and another participant, Maya, were not given nuanced advice on how substance abuse specifically affects treatment. This association of such comments with healthcare providers and their stigmatisation and discrimination regarding drug use could have impacted negatively upon Wynn's and Maya's overall health.
Participants in this study emphasised anxiety about the toxicity of HIV medication on vital organs, leading to them altering regimens themselves (Filippone et al, 2023). This led to disapproving comments from practitioners and a lack of acknowledgment of participants' need for education on their medication. Some participants who had altered their regimen and had less than 100% adherence still had an undetectable viral load.
Similarly, Arrey et al (2017) found exclusion. Semistructured interviews and hospital records investigated the stigma and discrimination affecting sub-Saharan African women in health care in Belgium. Participants were treated after other patients within a health service, despite having pre-arranged appointments ahead of them. One participant was operated on after all others because of her diagnosis and potential risk of transmission.
The health of BWLWH was not prioritised when addressing their susceptibility to infection in healthcare facilities, Rice et al (2020) found. Cleanliness of the facilities was of concern and participants had to wait to be seen for long periods of time with other potentially infectious people.
Intersectionality affected some participants in the study conducted by Brincks et al (2019). This US study, involving 801 participants, aimed to determine the association between attending primary care for HIV and discrimination, physician mistrust and medical system mistrust; participants recalled discrimination because of HIV status during appointments.
Brincks et al (2019) took a quantitative approach, using a 12-item scale to measure areas of medical mistrust, if present. Participants came from areas including New York, Philadelphia, Los Angeles, Dallas, Birmingham, Miami, Atlanta, Chicago, Baltimore, Pittsburgh and Boston. Findings indicated that those who were homeless, lived in southern areas of the USA and generally had poorer access to care had a high association with never receiving primary HIV care. Geographical, financial and social disadvantages meant many people were not able to get their health needs met.
Of those sampled, 20% reported discrimination because of HIV status, 15% experienced drug use discrimination and 10% were discriminated against because of their sexual orientation (Brincks et al, 2019). The study also raised concerns that some people might be less likely to report discrimination because they internalised pervasive negative views.
Vyavaharkar et al (2008) explored the experiences and perceptions of BWLWH. The topics explored were accessibility, availability and quality of healthcare services in South Carolina in the USA. Similarly, Arrey et al (2017) identified discrimination when two participants were declined physical examinations for potential blood clots and ovarian cysts. The recurring reason was the HIV diagnosis, with participants suggesting that indirect discrimination regarding race and culture contributed towards this behaviour. Therefore, judgement was put before patient care, potentially impacting the participants' health.
Stigmatisation
Sangaramoorthy et al (2017) used the Multidimensional Measure of Internalised HIV Stigma Scale created by Berger et al (2001). The overall average score of those who answered the question on whether they experienced HIV stereotyping was 0.6 in a scale of 0–1, indicating that stigma was high. The study found that, because people perceived HIV and other forms of intersectional discrimination such as that around geographical location and poor adaptation to different cultures, they preferred to travel to a clinic further from home to receive a respectful standard of care; this resulted in some financial constraints and reduced adherence in care.
Financial concerns also impeded participants' care within Rice et al's (2020) study. Some of them criticised America's care system, expressing that healthcare providers may be providing only certain treatments for them because of the financial benefit (Rice et al, 2020).
Negative experiences resulted in participants within Arrey et al's (2017) study demonstrating avoidance behaviours when seeking medical support from a pharmacy or GP as clinical staff had shown a lack of HIV knowledge and stigmatised attitudes.
Cannon Poindexter (2013) revisited the semistructured interview transcripts of four BWLWH from a previous study conducted in New Zealand, presenting their findings within a narrative approach. The aim was to gain a greater insight into stigma and discrimination experienced by BWLWH. Negative GP attitudes were demonstrated towards HIV in one participant's experience, and inconsistencies with practitioner continuity of care was reported (Cannon Poindexter, 2013).
Rice et al's (2020) participants expressed similar concerns. Previous unsatisfactory experiences led participants to fear having to find a new provider if they needed to and not getting the same quality of care as they were receiving now. Positive comments were also made within the study. Many participants were satisfied with the care provided and were aware that it would not be normal to experience the same standard of care everywhere.
At the time of Rice et al's (2020) research, many women within the study said they had experienced little stigma or discrimination from their healthcare provider. One participant said her provider was proactive in their approach to her health; this was expressed by addressing that they should review the medication she was on after 7 years to see how the drugs were affecting different bodily systems.
Others' attitudes towards the life histories of BWLWH, such as having multiple partners, may have impacted upon areas such as mental health and, in some cases, led to substance misuse (Brincks et al, 2019; Filippone et al, 2023). General feelings of reduced empowerment were reported. Arrey et al (2017) and Filippone et al (2023) reported that participants were disappointed to have lost social connections and familial support because of HIV stigma.
Intersectional experiences were presented in Rice et al's (2020) study. One older BWLWH thought her health did not need to be addressed as urgently as that of younger generations, and this was especially important in comparison with White people and men. The concept of neglect was suggested in the study, as one participant stated that there had been a lack of urgency to address her health needs when she was younger and, now she was older, young people, especially those who were White, were more of a priority for healthcare providers. This statement raises concerns that Black women are stigmatised not only because of their sex, race and HIV status; their age also contributes towards an unsatisfactory standard of care.
Participants from Arrey et al's (2017) and Sangaramoorthy et al's (2017) studies disclosed that they needed more education regarding HIV and its route of transmission to further advocate for their rights and educate the staff who they felt were not caring for them as expected.
Cultural differences in response to discovering HIV diagnoses were noted. In Cannon Poindexter's (2013) study, participants felt that negative attitudes were unjustly directed towards them, particularly from people who were also of sub-Saharan African descent. It was suggested that this was because of cultural norms of blame and HIV being associated with illness and death (Cannon Poindexter, 2013). In other studies, such as Filippone et al (2023), participants did not experience such stigma around HIV but issues were subtler. Examples included: health professionals lacking confidence in the participants' own knowledge of HIV and ability to manage their own health, which led to participants feeling less confident in being autonomous; and fear of being judged for having to sell their medication to survive (Filippone et al, 2023).
Racism
Living as a Black woman in many societies results in some form of racism occurring, whether indirect or direct (Arrey et al, 2017). Some women in the studies experienced their cultural background and race as barriers, preventing them from receiving equal care, a further example of intersectionality.
Racial barriers were identified by Logie et al (2011). Using opportunistic sampling and thematic analysis, they explored the stigmatisation and associated coping strategies of women with HIV. One participant stated that BWLWH were treated differently from other people of either sex of other races. This form of exclusion supported another participant's argument that HIV is often viewed as a disease associated with homosexual White men and intersectionality is an everyday problem for BWLWH.
The issue of medical mistrust because of ethnicity was suggested by Vyavaharkar et al (2008). One participant reported that, in her opinion, White staff had previously given her inaccurate health advice that did not correlate with her lived experiences and reinforced her experience of institutional racism as the advice applied only to White people.
Cannon Poindexter (2013) reported that a student nurse was told that African people who immigrated were spreading ‘African HIV’ (Cannon Poindexter, 2013: 714) to members of the public. Racism, discriminatory behaviour and peer pressure led to this participant quitting her degree. Cannon Poindexter (2013) reported that a student nurse experienced racism from a health professional because of ethnicity and HIV status, reinforcing the idea that HIV is associated with being ‘foreign’.
Discussion
Slavery, oppression and segregation are the foundations of institutionalised discrimination and racialised framing, which limit healthcare access and outcomes for many Black people on a global scale (Feagin and Bennefield, 2014; McDoom et al, 2015). The stereotyping of hypersexual behaviour and deviancy of Black women contributes a great deal towards intersectionality and the stigmatisation of HIV, resulting in inequitable treatment and a negative impact upon their mental health (Logie et al, 2011; Earnshaw et al, 2015). A consistently lower standard of care means expectations of treatment will remain the same; consequently, the poor quality of care will be less likely to be addressed (Conner and Norman, 1998).
The psychological theory of attachment, as explained by Bowlby (1973), introduces the idea that early, internalised experiences with caregivers impact on the way an individual perceives themselves and whether they are deserving of care. This theory suggests that the quality of care received will set the standard to be expected of future experiences (Bowlby, 1973). Applying this theory to structural discrimination in addition to a lack of knowledge of HIV in staff, health and wellbeing will be reduced (Vyavaharkar et al, 2008; Logie et al, 2011; Cannon Poindexter, 2013; Okoror et al, 2014; Arrey et al, 2017; Sangaramoorthy et al, 2017). The standard of care delivered in a healthcare setting can impact upon patients' own knowledge of their own medical needs, which again affects the quality of care provided (Flash et al, 2014; Frew, et al, 2016; Randolph et al, 2020).
Owing to their experience, many BWLWH appear to live in expectation of intersectionality, which results in a lower quality of life for many (Brewer and Dundes, 2018). Reduced health and wellbeing is associated with lower incomes and high levels of discrimination (Arrey et al, 2017; Randolph et al, 2020). Consistent evidence demonstrates that women living in lower-income areas receive a poorer quality of care than those in higher-income areas (Flash et al, 2014; Frew et al, 2016).
Black women who come from poorer economic areas are more likely to experience discrimination associated with intersectionality because of their vulnerable position within society (Burns, 2015; Brincks et al, 2019; Randolph et al, 2020). In all studies reviewed, many had a low income.
Negative themes around HIV care emerged and these themes should be compared against research involving different patient groups. Research on the topic of HIV care within the past 10 years has shown a lot of improvements in the perception and treatment provided among diverse populations, such as LGBT people, Black and Asian men (Rao et al, 2018; Boga and Dale, 2022; Logie et al, 2022).
Studies conducted before the past 10 years would suggest that lower income BWLWH and their families have had a poor experience with healthcare providers; however, within the past 5 years, evidence has shown a more positive outcome within this demographic, demonstrating how effective education, funding and destigmatisation of HIV is (Wolfe et al, 2021; Bhanji et al, 2023).
Positive experiences may also be a result of government action plans, including more funding to increase access to HIV healthcare facilities, testing, treatment and support within the UK to reduce the prevalence of HIV cases (Department of Health and Social Care, 2021).
HIV continues to be a public health challenge as the stigma surrounding it is active in many cultures (Shefer et al, 2013; Marsicano et al, 2014). The fear of stigmatisation and discrimination overpowers the control public health has over the epidemic (Marsicano et al, 2014). This is exacerbated by the fact that 72 countries criminalise the transmission of HIV, thus impacting upon research examining the social and scientific aspects of the disease (Logie and Turan, 2020). Criminalisation creates a negative public view, which is then directly associated with HIV; the possibility of prosecution for those transmitting HIV further victimises BWLWH (Logie and Turan, 2020).
Despite the barriers resulting from intersectionality, the studies exploring the experiences of older BWLWH showed they had become better able to deal with stigmatisation, discrimination and racism as they grew older (McDoom et al, 2015; Sangaramoorthy et al, 2017). Charmaz (2002) suggested this is because of identity reconstruction occurring when a meaningful societal role needs to be maintained, regardless of having to live with a long-term condition. The supportive familial role expressed by many participants within Rice et al's (2020) and Sangaramoorthy et al's (2017) study allowed a sense of control to be regained, which boosts psychological wellbeing instead of them letting negative staff behaviour affect their holistic health (Charmaz, 2000; 2002).
Limitations
As with all research, there are limitations that may have impacted upon the quality of the literature review.
First, there was a lack of studies that exclusively identified and discussed intersectionality and relating factors that could contribute to or prohibit access to medical treatment for a patient with HIV (Geter et al, 2018; Djiadeu et al, 2020). The lack of evidence on this topic highlights the insufficient recognition it is generating within the healthcare industry.
In addition, Arrey et al (2017), Rice et al (2020) and Filippone et al (2023) all used purposive sampling to recruit their participants. The benefit of this strategy when conducting qualitative research is that, although it will involve a smaller sample size than a quantitative study, participants may provide more detailed and emotive responses (Aveyard, 2018). Using a specific target audience in purposive sampling allows for greater comparison to be made between different cultures, and facilitates the purpose of the research (Aveyard, 2018). However, as with any study where participants are selected, the results may present bias and may not be reliable when assessing levels of trustworthiness (Nobel and Smith, 2015).
Most of the papers originate from America, which suggests there is a lack of recognition of the topic in the UK and other countries. Differences between healthcare systems may be reflected in the results and the overall health education for BWLWH and, especially, practitioners and quality of care provided for BWLWH. Geographical locations, health systems, the impact of non-governmental organisations and individual experiences are not always comparable between countries.
Recommendations
Effective communication between patients and staff can help address feelings of stress and anxiety (Logie et al, 2011). Communicating issues effectively allows patients to have topics clarified, thereby reducing the likelihood of misunderstanding.
Feedback forms could be used to ensure staff members know when a negative experience has occurred with a patient and the potential consequences such as disruption with continuity of care (Rice et al, 2020).
Overall, the literature review met the aim of the study using eight articles from various areas of the world. The lack of literature on the topic highlights gaps that may be open to further research. This highlights the need for more research that draws on how BWLWH's care can be improved.
Another suggestion is establishing whether there is difference in treatment and attitudes between those classified as sick with HIV and those who are deemed healthy with HIV.
Conclusion
Intersectionality is present across multiple countries, and correlates with a poor standard of care for BWLWH. Stigmatisation of HIV is still largely present in many different communities across the world, commonly involving ignorance on the part of staff regarding cultural diversity that is different from their own.
As a result of intersectionality, the needs of BWLWH are not being fully met in a multitude of ways, including physically, financially and emotionally, although more positive experiences have been reported in recent years.
Valuable relationships formed through familial connections allowed for older BWLWH to maintain a sense of identity, which empowered them to maintain a good standard of health. This could be integrated into healthcare systems globally by taking note of attributes presented by family members and social support figures and replicating them on a healthcare level. Providing the support required for all BWLWH will allow those who do not have the same social support to cope with the injustice of intersectionality more effectively.
Recommendations for future practice would include comprehensive training for all health professionals in caring for patients who may be HIV positive. An increase in knowledge will help reduce stigma and discrimination.
Clear communication skills are significant in health care and should be evaluated, for example through patient feedback forms, to improve practice.
KEY POINTS
- Intersecting discriminations, for example, around sex, race and HIV status, can have a detrimental effect on the care of Black women with HIV
- Exploration of the standard of care received by Black women with HIV shows many of their experiences were unsatisfactory
- Geographical, cultural and financial factors can impact upon quality of and adherence to care
- Patients who had not received adequate education from health professionals have lower levels of empowerment, autonomy and satisfaction with care
CPD reflective questions
- What approaches could be taken within a healthcare setting to reduce the effects of intersecting discriminations such as racism, sexism and prejudice around HIV?
- How can financial and geographical complications be addressed by healthcare providers to increase adherence to care?
- What actions can be taken to make Black women living with HIV feel they are a priority?