The Power of the Patient Perspective

The Power of the Patient Perspective

“‘I [Narrator] would never have a procedure done here: I’ve seen too much. To them, if you’re black and poor, you’re nothing but a guinea pig.’ I realized that my discomfort with her words went beyond the truth or falsity of her allegations: The mere fact that she believed them was unsettling, because she had worked in a hospital setting, was presumably better informed than most, yet she did not trust the medical system and seemed less likely to turn to it when ill. The perception of evil in such cases, I realized, can prove as damaging as the malfeasance itself.” Harriet A. Washington from her book Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present.

The above quote illustrates perceptions held by a woman of color about a particular hospital, and the healthcare system as a whole. Specifically, an African American woman believes that hospital staff treat African Americans, especially those who are low-income, in an unethical and careless manner. The reader may consider that, to the Narrator, the perceived origin of unequal treatment lies within providers’ disparate thoughts about African Americans. Nevertheless, the beliefs of the Narrator are also dangerous to both patient and provider, as well as to the healthcare system.

As a trained social psychologist and mixed-methodologist, it is my passionate duty to recognize and understand the power of human perception and related behaviors. Also, as a healthcare researcher, I recognize that healthcare represents a realm in which there is a dire need to understand human perception – the patient perspective, if you will. Take for example, the continuing challenge that frequent, non-urgent emergency department use poses to the current healthcare system in terms of costs, provider and hospital resources, and patient wellness. Despite a disproportionately high number of Medicaid patients frequently visiting emergency departments for non-urgent purposes, researchers and providers have largely approached the issue from the provider perspective using quantitative data sources.  However, a burgeoning body of literature featuring qualitative methodologies offers a more complete view of the issue, by exclusively focusing on the narrative provided by Medicaid patients (Glover & Purim-Shem-Tov, in press).1  Here, providers and researchers may develop and modify interventions addressing and decreasing non-urgent emergency department use by Medicaid patients.

Now, let’s step back and take a broader view of healthcare. Issues plaguing healthcare. Issues plaguing healthcare – including cultural mistrust and cultural competence, rising healthcare costs, access to healthcare, and a limited number of providers – are widespread across disciplines, specialties, and locations. Both patients and providers contribute to the existing issues within healthcare. One goal of a provider is to supply the best care possible to each patient in a culturally competent manner. However, the need for healthcare originates with patients, with their ultimate goal consisting of activation and engagement. I posit that the patient portion – activation and engagement – is the more arduous task when compared to provider goals.

Consider that patient activation and engagement require consistent effort and the undoing of potentially harmful beliefs of the medical system and its providers. Without a patient deciding to seek healthcare for an issue, and being able to act upon their decision (i.e., patient activation), subsequent steps made by both patients and providers are rendered useless. Once activated, the patient must remain engaged throughout the lifelong process of health and healthcare. Ultimately, patients bring their perspectives including social cognitive processes and heuristics to the healthcare system and, in part, have the power to influence the remainder of the healthcare process.

In order to achieve health equity, at the basic level, a patient should not represent a monolithic group upon which providers act. Nor should a patient simply represent a particular group based on race, ethnicity, gender, insurance status, etc.  Patients identify with and represent many groups; however, a disconnect often exists between how a provider perceives a patient and the way a patient identifies himself/herself. When patients are able to express their perspectives, they may indicate complex self-identification or identity intersectionality. Here, these complex identities inform their healthcare beliefs and choices.

By understanding and, subsequently, addressing the patient perspective and related healthcare experiences, providers may become culturally competent and advance methods of delivering effective healthcare. Perceptions – patient perspectives about healthcare included – are slow to change, and resulting behaviors often are inconsistent or short-lived.  Hence, cultural competency must be an ongoing process, with providers continuously challenging their notions about their patients. Providers must also be willing to provide care for the bespoke needs of vulnerable, disenfranchised groups of patients.  For the effectiveness of healthcare to take root, patients’ perceptions of the healthcare system, and the intentions of their providers, must be built upon a patient-provider partnership, patients’ trust of their providers, and continuous informed interactions.

 

1 Glover, Crystal M. and Purim-Shem-Tov, Yanina A. (in press). Emergency Department Utilization: A Qualitative Analysis of Illinois Medical Home Network Patients. Journal of Health Disparities Research and Practice.


Crystal M. Glover, PhD, is an Assistant Professor and BMO Harris Bank Health Disparities Research Fellow in the Department of Preventive Medicine, Rush University Medical Center.

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How Racial Categories Affect the Health Status of Mixed Race Young Adults

How Racial Categories Affect the Health Status of Mixed Race Young Adults

Since the 1967 repeal of anti-miscegenation laws in the United States, the number of interracial partnerships – and the resulting number of mixed race individuals – has skyrocketed.  According to the Pew Center, approximately 16% of young adults in the U.S. could be multiracial (two or more races), depending on the definition and how individuals are categorized in surveys. Yet, despite the increasing number of multiracial Americans, very little is known about the health outcomes and health patterns of this group in the context of health disparities. Through my research, I have sought to examine the health patterns of multiracial young adults, and to learn how changes in racial categories are related to health status.

The topic arose from my lived experience as a Black woman of mixed heritage, and from my professional background as a social worker. Over the years, I have met many multiracial young adults who ascribe to various health beliefs based on how they racially categorize themselves, and how others categorize them. One example is a Black/White individual who stereotypically smokes menthol cigarettes to confirm that they are Black in social settings, but might not always self-report as solely Black when asked formally. This led me to question the health behaviors of multiracial young adults, and the role of racial categorization in population health research. I questioned if multiracial adults indeed engage in riskier behaviors, such as cigarette smoking or heavier drinking, when compared to their single race peers, and if there might be a difference in health service use. I also wanted to know if the way we use race in population health research was dependent upon how individuals self-report their race, and if changes in self-reported race were related to health status in adulthood.

In my experience as a social work researcher, I quickly learned that multiracial individuals are not included in most population health research efforts, and if multiracial is included, it is a single all-inclusive category. Accordingly, my colleagues and I conducted a series of studies to determine if a single all-inclusive multiracial category was sufficient to account for the health of multiracial adults, compared to single race young adults. In one study, we found that the single category masks a lot of the variation in specific multiracial subgroups. When we compared the primary care service use of an all-inclusive multiracial group to monoracial White adults, we found no difference in health service use. When examined by subgroups (e.g., Asian-White or Black-Native American) some multiracial subgroups (e.g., Black-White and Black-Native American) are less likely than White adults to report primary care service use in the past year. These disparities in health service use would not have been evident if only examining an all-inclusive multiracial group of adults.

In another study, I examined whether changing racial categories in adolescence was associated with differences in health in young adulthood. The study examined the change in race over time, and sought to examine the health status of multiracial individuals who switched race either from many races to a single race, from a single race to multiracial, or reported consistent multiracial categories at both times.  After a series of tests, the results showed individuals who switch from a single race to multiracial are less likely to report fair/poor health status compared to single race adults.

This collective research is an entry to gaining a fuller understanding of multiracial Americans and changing health patterns in our country. If the trend in selecting two or more racial categories to self-designate one’s race continues, we will need to change our approach to using race in health research. Now more than ever, health researchers must ensure that special subgroups of multiracial Americans are categorically included in health research, and not left out of the conversations to improve our nation’s health.

I often think about racial categories for my mixed race child, who is also of Hispanic heritage. I wonder how she will self-report her racial categories, and how her information will frame the discussion of race and ethnicity in our country. My experiences are not unlike tens of millions of other Americans who are either self-identified as mixed race themselves, or are parents of mixed race children. It is time that we reexamine the fluidity in racial categories as we build a culture of health in the coming decades.


Karen Tabb Dina, PhD, MSW is an Assistant Professor of Social Work at the University of Illinois at Urbana-Champaign. She received her PhD in Social Welfare from the University of Washington, her MSW from the University of Michigan, and her BA from Eastern Michigan University. She conducts research on the social determinants of health (e.g., race, gender, and income) and health disparities. 

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The statistics are well-known. African Americans bear the heaviest burden of HIV of all racial ethnic groups in the United States, says the U.S. Centers for Disease Control and Prevention (CDC). And, the burden of this disease is carried squarely on the shoulders of African-American women. Their rates of new HIV infections are significantly higher than white women, and nearly five times that of Hispanic/Latino women. Adding insult to injury, 2011 CDC data show that almost 75,000 African Americans are living with HIV unaware.

Through my work as an HIV/AIDS advocate over the past decade, I’ve learned that the “why” is a little more complicated than the “what” when it comes to breaking down these inequities. And these inequities have fueled my passion to stem the spread of HIV/AIDS in communities of color. Through research and community interventions, I’ve learned that a lethal mix of economic, social, cultural, biological, environmental, and behavioral factors contribute to the HIV/AIDS devastation in communities of color.

Looking at the statistics along with the contributing factors makes it easy to assume that the future for infected African-American women is grim. What these facts and figures underestimate is the ability of African-American women to turn the tide on this deadly disease. The statistics downplay the resilience of a group of women that continues to thrive in the face of many other challenges. Through progressive and thoughtful interventions like Project THANKS and DASH, African-American women infected with HIV/AIDS are using empowerment and education to manage their diagnoses.

Project THANKS (Turning HIV/AIDS into New Knowledge for Sisters) is an evidence-based intervention that uses a community-based participatory and empowerment approach to prevent and manage the multiple conditions of HIV and other chronic diseases among African-American female HIV+ substance abusers. The goal: help women manage and improve their health when faced with complications associated with substance abuse, HIV, and other chronic diseases such as diabetes and hypertension. The program is targeted to meet the unique personal, familial, and cultural needs of women of color.

Project THANKS is a collaboration with Dr. Meena Mahadevan, Associate Professor of Nutrition Sciences at Montclair State University. The program is implemented over seven group sessions, and each session incorporates techniques that help the women set realistic goals, monitor their progress, and serve as sources of social support for one another. The program incorporates peer-facilitation and group mentoring techniques as well. At the end of each session, the women are encouraged to partner with a peer, and devise “action steps” or strategies that they can implement on their own. Because of participation in this program, dozens of women have stopped using drugs, become active participants in their own health, and maintained an optimal health status despite the complications of HIV and related illnesses.

Another intervention leverages the close relationships between infected mothers and their daughters to break the cycle of HIV/AIDS. Project DASH (Divas Against the Spread of HIV/AIDS) is a mixed-methods study that explores the relationship and communication characteristics between daughters and their HIV+ mothers, as predictors of sexual behaviors and HIV risk of the daughter. The objectives of the study are to: 1) explore the experiences of HIV+ minority women in New Jersey in accessing and navigating the healthcare system, 2) examine the relationship and communication characteristics between daughters and their HIV+ mothers and its impact on HIV prevention; and 3) serve as an intervention that targets mother-daughter sexual communication as a methodology to reduce HIV risk.

The preliminary results of Project DASH have tremendous potential to identify additional drivers of HIV/AIDS in urban communities, and examine specific elements of the mother-daughter relationship that can protect daughters against HIV risk and modifiable risk factors.

The findings from both studies suggest something very powerful: providing comprehensive services that include culturally sensitive education components, in addition to strengthening an individual’s existing personal, social, and environmental support networks, can improve health outcomes among African-American women living with HIV.

The intersection of poverty, disparities, and the social determinants of health are constantly at play. African-American women are naturally strong, even in the face of HIV/AIDS. They are playing up that trait to put survival into their hands. It is imperative that researchers and communities work together to educate and empower each other, as well as those infected, to reduce the prevalence of HIV.

Ndidiamaka N. Amutah, PhD, is an assistant professor at Montclair State University in the Department of Health and Nutrition Sciences. In this capacity, her research focuses on adverse birth outcomes for women of color, HIV/AIDS and women of color in an urban context, and community-based participatory research. To learn more about Dr. Amutah’s research, visit ndidiamutahphd.com.

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