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. 2021 Fall;11(1):134–148.

The Evolution of Dignity: An Intervention Model to Engage and Retain HIV-Positive Black Women in Care

Ivy Turnbull 1, Deane Taylor 2, Alicia Beatty 3, June Trimble 4, Elizabeth Cabrera 5
PMCID: PMC9930504  PMID: 36818207

Abstract

The Black community is currently battling two pandemics, one is HIV, and the other is COVID-19. Similarly, as with HIV, COVID-19 has shone a spotlight on our healthcare system’s structural failings and revealed the disproportionate impact on the Black community, particularly Black women. Black women accounted for the largest proportion of new HIV diagnoses (58 %) among all women in 2018 and represented about one-quarter of new HIV diagnoses among all Black Americans. Additionally, Black women’s exposure to an abundance of misinformation about the COVID-19 infection resulted in an increased risk of complications and death from the COVID-19 virus compared to other racial and ethnic groups.

Factors that increase HIV transmission risks for Black women include living in poverty, intimate partner violence, and stigma associated with HIV. Moreover, environmental, physical, cultural, financial, social, and psychological barriers are identified as unique challenges for this population’s cohort. After being diagnosed with HIV, Black often were unable to access quality HIV care. Access and retention in care are tantamount to the overall well-being of women who are HIV positive.

Frequently healthcare providers may attempt to engage and retain patients using only clinical measures. Our non-clinical intervention, The Evolution of Dignity, supports medical outcomes by creating a process that empowers women to motivate themselves toward improved health outcomes while ensuring their engagement and retention in care. Thus, by implementing our comprehensive intervention, all of the necessary elements contributing and promoting improved service utilization and medical adherence are integrated.

Keywords: HIV, Black women living with HIV, COVID-19, Healthcare, Intervention

Introduction

Like HIV the COVID-19 pandemic has shone a spotlight on our healthcare system’s structural failings and revealed the disproportionate impact on the Black community, particularly Black women. Black women who are HIV positive are often challenged by circumstances that result in an inability to access care which is tantamount to their overall well-being.

According to the Centers for Disease Control and Prevention (CDC), (2020), more than 7,000 women received an HIV diagnosis in the United States. Black women accounted for the largest proportion of new HIV diagnoses (58%) among all women in 2018 (CDC, 2020). The rate of new diagnoses among Black women is 14 times the rate among white women. Black women also represented about one quarter (26%) of new HIV diagnoses among all Blacks in 2018 (CDC, 2020). Notably, the rate of new infections among Black women has decreased over time, the decline has plateaued in recent years (Ojikutu & Mayer 2021).

Recent epidemiological data show that Black communities are being disproportionately impacted by COVID-19, resulting in higher morbidity and mortality rates compared to other racial and ethnic groups. For Black women in particular, a long-standing history of systemic racism and marginalization has resulted in increased vulnerability and susceptibility to certain adverse health outcomes. (Chandler, 2021).

As with HIV, the advent of COVID-19 underscores the enduring connection between systemic racism and health. Initially information circulated that people with HIV who were on effective treatment were not at greater risk of contracting COVID-19 (Cole, 2020). Nevertheless, Black women were more likely to suffer from pre-existing health conditions that exacerbates their vulnerability to COVID-19. These pre-existing conditions, coupled with a myriad of health disparities and inequities experienced by Black women living with HIV, profoundly impacted their ability to maintain positive health outcomes.

Background

The unprecedented COVID-19 pandemic has exacerbated the marginalization, stigma, health disparities, and structural racism that was already crippling Black communities (Nydegger & Hill, 2020). Black Americans experience worse health outcomes, decreased access to healthcare, and lower quality healthcare across various diseases and conditions than other races (Ford, 2017). Clear overlaps exist between the COVID-19 pandemic and the HIV epidemic. Across the United States, the number of COVID-19 cases, hospitalizations, and deaths among Black people are considerably overrepresented compared to population density (Artiga et al., 2020); Garg et al., 2020). Similarly, as HIV rates decline overall nationally, rates in the South remain alarming because vulnerable communities, particularly those of color, endure a disproportionate burden of HIV (Centers for Disease Control and Prevention, 2005; Fleming et al., 2006; Hill et al., 2020).

Disparities in health in America have been documented since the early 20th century. W.E.B. Dubois first observed racial and ethnic inequalities in health in 1906 (Dubois, 2003). Despite decades of awareness, most of the gaps in life expectancy and disease incidence between racial and ethnic groups have remained the same, while in some they have even widened. It is estimated that 83,000 deaths occur each year as a result of racial and ethnic health disparities (Satcher, et al., 2005).

Smedley, et al. (2003) in the Institute of Medicine’s report Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care, discussed tracing the dimensions of racial health disparities in the United States. In addition to having higher rates of morbidity and mortality diabetes, cardiovascular disease and HIV/AIDS, health care received by Black Americans was of lower quality and more difficult to access than that received by Whites (Smedley, et al., 2003). Black women are much more likely to have higher rates of diseases and disabilities and have shorter life spans. It is essential that HIV/AIDS must not be relegated to the litany of other health disparities that continues to jeopardize the health and longevity of Black women living with and vulnerable to HIV.

Problem/Challenge

According to Randolph, et al., (2020) mistrust in the U.S. health care system, grounded in perceived structural racism, is a key factor preventing Black women from seeking out HIV prevention and treatment services. For many Black women, their own health is not a priority when choosing between taking care of themselves and their families. Black women living with HIV often times sacrifice their own health and well-being by ignoring their unmet healthcare needs.

For the Black woman living with HIV there is an overwhelming sense of being seen as invisible to their care providers, and the disregard of their lived circumstances is often overlooked or not considered outside of their viral load. Given the challenges that HIV introduces to the newly diagnosed woman at access points to care, creates a significant opportunity for the HIV service-provider to consider interpersonal concerns faced by these individuals regarding HIV care and treatment.

Black Woman Living with HIV and the Provider

To serve Black women who historically have been disproportionally impacted by HIV/AIDS and now COVID 19, it is critical to start with providers working to build trust and nurture dignity through each encounter to offer the services. Thus, Jacobson (2009, p.1) argued that “actions taken to respect, protect, and fulfill human rights promote dignity, while those that violate human rights also violate dignity.” To establish a mutual bond between the Black woman living with HIV and her provider, requires time to build trust and understanding. In such, a mutual relationship is not limited to discussions of adherence to medication.

Every encounter between the provider and the patient should lead towards building of a respectful relationship that nurtures the Black woman living with HIV dignity and dissolves the traditional one-sided hierarchical walls often found in healthcare systems. Additionally, the inclusion of non-clinical protocols are essential to the goal of better healthcare outcomes for Black women living with HIV. In order for these women to fully engage in their care it is critical that they believe their providers understand and respect their values and culture. Thus, the provider begins to foster the human-rights and dignity of the Black women living with HIV.

Access to care for Black women living with HIV was as unpredictable as a “roll” of the dice. The women often admitted their lives were chaotic and managing multiple medical care appointments were difficult. These women often felt invisible and found it difficult to engage in care because of logistical and structural barriers and service delivery models that are often highly centralized. Evidence suggests that larger investments in decentralized HIV services may hold significant benefits to both the cost and better health outcomes (Rochat, et al., 2011).

The healthcare system’s failure prompted us to create a comprehensive, culturally competent, coordinated system of care to address the service fragmentation. The goal was to expand access points to reduce barriers to care and further increase the engagement and retention of Black women living with HIV. Thus, we introduced a family-centered care approach.

Family Centered Care Approach

Central to any definition of family-centered care is the concept of partnerships between consumers and providers of health care. Family-centered care is described as “an approach to health care that offers a new way of thinking about the relationships between families and health care providers.” Specifically, family-centered care is an approach to the planning, delivery, and evaluation of care that is governed by mutually beneficial partnerships between the providers and consumers of health care ( Johnson, et al., 2008).

The role of service providers is not to “fix” the family. Rather, the service providers’ responsibility is to address the whole family system and assist members in developing the communication, power, boundaries, roles, flexibility, and cohesion they need to create a healthy family ecosystem (Werner, et al., 2007). Thus, the key to developing rapport is flexibility of behavior and the desire to step into someone else’s world. It’s not about how many family members you can tell what to do, it’s about how many family members you can understand empower and motivate (Comaford, 2013). By implementing a family-centered care approach and creating our non-clinical intervention Evolution of Dignity (EOD) it allowed us to decentralize our traditional HIV healthcare delivery-system which was cost-effective and beneficial to the health outcomes of the Black women living with HIV.

Non-clinical intervention

The relationship between care team providers and Black women living with HIV must be nurtured. Therefore, the intent for designing an appropriate non-clinical intervention was to mitigate the systems barriers which prevented these women from achieving their best healthcare outcomes. The non-clinical intervention, EOD, supports medical outcomes by creating a process that empowers women to motivate themselves toward becoming active partners in their care.

Literature Review

HIV/AIDS and COVID-19

The history of the AIDS epidemic in the U.S. is exacerbated by racism, bias, and discrimination resulting in disparities in access to care, treatment, and prevention for Black women at risk of HIV/AIDS. Structural racism, not race, is the true driver of health inequities and poor health outcomes among this cohort of the population. Reducing the racial disparity in HIV will require interventions that address structural and social factors, including lack of access to quality health care.

The initial public health response on HIV/AIDS was not focused on Black communities in most of the country, despite evidence of an emerging epidemic. Thus, leaving a segment of the population ignorant in its understanding of the virus, its spread, and its potentially devastating impact on Black America.

The HIV/AIDS epidemic presents a much different challenge than the one faced at its initial appearance 40 years ago. According to the CDC, forty-eight women died from AIDS from 1980–1981. Based on the epidemiological data since then, it can be concluded that these women were, most likely women of color, specifically Black women between the ages of 15 and 44 years (Zierler & Kreiger, 1997). By 2004, HIV became the leading cause of death for Black women between the ages of 25–44 (Kaiser Foundation, 2007). In 2005, the rate of AIDS diagnoses for Black women became 20 times that of the rate for White women (Gavett, 2012). In 2018 the highest rates of diagnoses of HIV infection among Black women were in the South (CDC, 2020).

According to the CDC, the rate of new infections among Black women has decreased over time, however this decline has plateaued in recent years. As we enter the 4th decade of the epidemic, Black women continue to be disproportionately affected by HIV. The majority of new HIV infections, showing the greatest prevalence, and the highest rates of HIV-related deaths were among Black women living with HIV in the U.S., despite making up less than 15% of the female population (CDC, 2020).

Harvard University researchers, Rushovich’s et al., (2021) study shows that Black women are dying from COVID-19 at significantly higher rates than white men. Key findings of the study include Black women have COVID-19 mortality rates that are almost 4 times higher than that of white men and three times higher than that of Asian men, as well as higher than white and Asian women. The disparity in mortality rates between Black women and white women is over three times the disparity between white men and white women.

The study is the first to quantify the inequities in COVID-19 mortality looking at both race and sex group. It is well understood that racism and social inequities, not genetics, are responsible for racial disparities in COVID-19 mortality. The Harvard researchers’ findings challenge the focus of biology as an explanation for sex differences in COVID-19 mortality. Thus, the researchers argue that societal factors related to gender in combination with racism and socioeconomic status are also important explanatory factors.

Family-Centered Care and Dignity

Family-centered approaches represent the most appropriate and cost-effective models for responding to the challenge of HIV prevention, treatment, and care in poorly resourced settings. Leeper, et al. (2010) posit that data from family-centered care sites suggest that this model is an effective tool for recruiting Black women living with HIV, preventing mother to child transmission, supporting patient adherence and clinic attendance, and improving clinical outcomes. Family-centered care is an approach to the planning, delivery, and evaluation of care that is governed by mutually beneficial partnerships between the providers and consumers of health care (Smedley, et al., 2003). Family-centered care based on a bio-psychosocial systems approach: the primary focus of health care is the client in the context of their family (Shelton, et al., 1987).

Family-centered care is a comprehensive strategy that addresses the biopsychosocial nature of HIV. It is a highly individualized, gender-responsive approach treatment of HIV for women. Gender-responsive treatment is predicated on the distinctive characteristics of the female physiology and women’s roles, socialization, experiences, and relative status in the larger culture (Werner et al., 2007).

Gender-responsive treatment is trauma informed, strengths based, and relational (Grella, 2004). For treatment to be responsive for women also requires that the focus of treatment is organized around maintaining affiliations and creating healthy connections to others, especially other family members (Werner et al., 2007). Such treatment provides a full range of services to address the array of problems associated with HIV prevention, care, and treatment.

See me before you attempt to treat me is the sentiment of many Black women in healthcare settings. At the very least, healthcare professionals must extend the courtesy of listening to the patient before concluding that the answer rests solely with the provider without the patient’s input. Furthermore, an individual’s dignity is manifested in such things as self-respect and self-value. Clearly, dignity is fragile and can be dishonored or eroded, especially in established hierarchical settings, like healthcare facilities. Jacobson (2009) suggest that there is an established hierarchy in healthcare settings in which the provider and patient are not seen as partners in the patient’s care.

Furthermore, Jawad (2020) agreed with the researchers’ findings and suggested that an additional pre-existing condition rarely discussed in healthcare is racial inequality. Such an omission may reveal a lack of understanding of the contributing factors to poorer health outcomes for Black women living with HIV. Many minority groups could not follow universal policies such as social distancing during the pandemic due to living in densely populated areas ( Jawad, 2020). Similar issues regarding housing and access to affordable healthcare were also problematic for Black women living with HIV. These women are often the working poor who are also underinsured and live in inadequate housing conditions.

Therefore, Jacobson (2009) contended that dignity abuses could be connected to inequalities rooted in social influences. Schmidt, Trappenburg, and Tonkens (2020) agree with Jacobson (2009), suggesting that socially marginalized groups have contributing factors such as sicknesses, drug abuse, or poverty, increasing the risk of dignity abuse. Still, dignity can evolve if nurtured. If both providers and Black women living with HIV seek to understand, empathize, and work to build trust, dignity can be built ( Jacobson, 2009).

Evolution of Dignity Intervention

The non-clinical intervention, The Evolution of Dignity, supports clinical outcomes by creating a process that empowers women to motivate themselves toward improved health outcomes while ensuring their engagement and retention in care. Thus, by implementing our comprehensive intervention, all of the necessary elements contributing and promoting improved service utilization and medical adherence are integrated.

The Evolution of Dignity Change Model

While designing the Evolution of Dignity intervention (EOD) a review of the following models were used to develop the framework for our intervention. The Cycle of Change (Prochaska, DiClemente, & Norcross, 1993); The Multicultural Organizational Development Model ( Jackson & Holvino, 1988); and (Chronic Care Model (Glasgow, et al., 2001). The five phases of the EOD intervention focused on establishing and arranging clear ways to develop the relationship between the collaborative care team and the woman. The model also provided a process to making the system changes necessary by breaking down the intervention into organized phases. The collaborative care team consisting of Black women living with HIV, and clinical and non-clinical providers were charged with spearheading the systems changes.

Phases of the Evolution of Dignity Intervention

  • Phase 1: Integration of Service (4 months): During the initial assessment of the healthcare system, multiple issues were identified that hindered easy access to care. The team identified strategies to integrate both the clinical and non-clinical services to create greater access points. The team balanced two tasks, one was to address system barriers and the other was to gain buy-in from the stakeholders. A project manager was assigned to ensure that team remained focused on the established targets.

  • Phase 2: Service Readiness (5 months): A facilitated strategic process by which providers, Black women living with HIV, and other stakeholders identified an appropriate change concept. The process for service integration was streamlined, to address structural and cultural barriers that were inclusive of empowerment training for the Black women living with HIV.

  • Phase 3: Pilot Design and Planning (3 months): Planning focused on the integration of clinical and non-clinical services. A Plan Do Study Act (PDSA) process was implemented to monitor the EOD intervention. The result of this phase was the initial pilot test for a one day per week integration of clinic and non-clinical services.

  • Phase 4: Implementation (3 months): The findings from the PDSA process provided insight to the collaborative care team on what to adjust and where to monitor improvements of the EOD intervention. To operationalize the EOD intervention, team members prepared a weekly report to summarize their work.

  • Phase 5: Sustainability: (On-going): Continuous assessment and evaluation occurred throughout all phases of the EOD intervention process by using a PDSA framework. Service and sustainability decisions continued based on lessons learned from the pilot.

Figure 1.

Figure 1

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Findings of the Intervention

The Evolution of Dignity (EOD) intervention contributed to the improved engagement and retention of Black women living with HIV in care. Designed as a non-clinical intervention, the EOD consisted of five phases adapted from the models listed above. The EOD intervention created a process that supported, empowered, and motivated Black women living with HIV towards improved health outcomes.

The EOD intervention featured a comprehensive, coordinated culturally competent family-centered care approached in the design that addressed the lived experience of Black women living with HIV which encouraged trusted relationships between the women and providers that nurtured dignity. Finally, the EOD endorsed the decentralization of traditional healthcare delivery systems and limited access to care barriers.

Discussion

Dignity matters. Black women are often subject to discrimination when accessing healthcare. Respecting the human rights of Black women seeking care is critical for better health outcomes. This is particularly true for Black women living with HIV. A growing body of literature suggests that discrimination against Black women living with HIV in health care settings may be especially harmful to their overall health and well-being (Rice, et al., 2019). The healthcare system ignores the values, culture, and the lived experiences of Black women living with HIV leading to the women often feeling diminished. Those feelings result in the women’s lack of engagement in their HIV care and treatment that is essential for sustaining their lives.

The paper’s intent is to convey that service delivery systems created without the input of Black women living with HIV/AIDS impedes efforts to reverse the course of the HIV/AIDS epidemic in this population and further exacerbates this public health crisis. It also examines how structural racism, health inequities, race, class, and gender shape how healthcare is offered and delivered in this country.

We looked beyond existing service delivery systems and proposed an intervention EOD that features a comprehensive, coordinated, culturally competent family-centered care approached in the design and takes into account the lived experience of Black women living with HIV/AIDS. The purpose of the intervention was to encourage trusted relationships between the women and providers that nurtured dignity. Another purpose of the EOD was to decentralize traditional healthcare delivery systems that limited access to care for Black women living with HIV.

The work we embarked upon in designing the EOD was part of our commitment to ensuring that Black women living with HIV had long, healthy, and productive lives. We believed that the relationship between the women and their providers was essential to their survival and wanted to create a process which provided them with an “active” voice in their health care decisions. We anticipated that creating service delivery systems that were responsive to Black women living with HIV would inform their providers on how to better treat them based on their culture and lived experience. Though our model may have limitations more research is needed in this area.

Lessons Learned

The lessons learned have national implications, as they set forth promising strategies. By implementing the Evolution of Dignity intervention, we learned three significant lessons that will assist healthcare leaders in being more mindful of the importance of dignity for all patients accessing healthcare and specifically about Black women living with HIV. These keys steps are only a starting point in retaining Black women living with HIV in healthcare and the beginning of the evolution of dignity for this population.

  1. Seize the opportunity to listen. When working with Black women living with HIV, it is crucial to understand that they balance a variety of family demands that often prevent them from prioritizing their care. It does not suggest that the women do not care about their health. First, Black woman living with HIV need to share their issues with a provider in the healthcare system regarding their care. Second, there must be a mechanism in place to address the women’s non-clinical needs. Finally, the women will be able to focus on adherence to her medical regimen.

  2. Build trusting relationships. Take small steps to build trust between the Black woman living with HIV and her providers. Understand that all parties need to recognize that they are on the same team, with the same objective: the woman’s best health outcomes. Here’s the thing, when we all are more flexible, we are capable of achieving trust between all parties. Establish appropriate boundaries. Dissolve inflated impenetrable walls of hierarchies that may hinder the woman from being honest. Mutual trust beginning with good communication, must be a priority.

  3. Make the system work. Send signals to the Black women living with HIV they are important by creating healthcare systems that work for their needs, not the other way around. Healthcare systems serving Black women must be built to assist the women in remaining in care. So often, leaders responsible for healthcare systems overlook this critical step.

Conclusion and Policy Implications

Many of the existing HIV/ AIDS policies and interventions fail to respond to Black women’s needs and realities, and therefore fail to significantly reduce their HIV risk and vulnerabilities. Since the beginning of the epidemic in the United States 40 years ago, Black women living with and at risk for HIV/AIDS have not only confronted the disease but continue to face many related obstacles. Their race, class, gender, economic and political status in society causes them to have the least access to resources and benefits which can significantly improve their lives (Albertyn, 2000).

The available evidence on race, class, gender inequities within relationships, the workplace, the economy, and political structures confirm that Black women are more vulnerable than other groups of women to HIV/AIDS. Though the data clearly reveal that Black women are disproportionately affected by this disease, there are very few HIV/AIDS-related policies that specifically focus on the needs of Black women as a group.

Black women have been ignored in the HIV/AIDS epidemic far too long, being invited to the political table long after agendas have been set and policy decisions have been made. This practice perpetuates the belief that participation in the HIV/AIDS policy decision-making process is a privilege rather than a “right.” The political engagement and leadership of Black women living with and vulnerable to HIV/AIDS is an essential component of an effective and comprehensive national response to the epidemic in this country. Influencing mechanisms and processes by which Black women living with and vulnerable to HIV/AIDS become integral actors in determining federal, state, and local HIV policies hold significant promise for transforming the infection rates in this population.

As with HIV, Black Americans have some of the highest COVID-19 infection rates (Godoy &Wood, 2020). For Black women living with HIV, COVID-19 is particularly life-threatening. Obinna (2021) submits that bold interventions must be taken in order to protect those most vulnerable to COVID-19. Moreover, the effects of COVID-19 have exposed harsh truths about health inequities in our healthcare systems. These truths reveal that historical practices of racial exclusion and discrimination have contributed to race-based disparities in health. Addressing the spread of COVID-19 must include a closer examination of the legacies of discrimination which have shaped Black communities in the U.S. (Obinna, 2021).

Footnotes

Authors’ Note

We have no conflict of interest to disclose. Correspondence concerning this paper should be addressed to Ivy Turnbull at bpanivy1@aolcom.

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