Black Veterans with CKD described healthcare experiences that were retraumatizing and further worsened their psychological and physical responses to racism, potentially exacerbating CKD symptoms.
Compared to White Veterans with chronic kidney disease (CKD), Black Veterans with CKD are twice as likely to progress to end-stage renal disease (ESRD) and make up approximately 37% of all ESRD patients in the VA healthcare system, while only comprising 12% of the Veteran population. Limited access to quality healthcare, lower socioeconomic status, environmental toxins, and health beliefs and behaviors all contribute to the racial disparities observed in CKD in U.S. healthcare. Despite increasing evidence of racial health disparities and mounting indications of healthcare inequalities in the U.S., research exploring the healthcare experiences of Black Veterans with CKD is limited.
Conducted by investigators with HSR&D’s Center for Health Equity Research & Promotion (CHERP), this qualitative study examined the healthcare experiences of Black Veterans with CKD to identify and explore any racial discrimination they encountered. Investigators interviewed Black Veterans with a diagnosis of CKD who used the Corporal Michael J. Crescenz VA Medical Center’s renal clinics in 2018 and 2019. Interviews (30-60 minutes in duration) were conducted by a Black male principal investigator and a Black male research assistant before or after appointments – or during dialysis. Interviews focused on three open-ended questions:
- What are some examples of racism you have experienced by a doctor?
- What are some examples of racism you have experienced by someone who works at the hospital who is not your doctor? and
- How do you think racism affects your health?
There were 36 Veterans (35 male, 1 female) with CDK in this study; all received care at the Corporal Michael J. Crescenz VA Medical Center in Philadelphia, PA, at the time of the interview which were conducted between October 2018 to September 2019. The mean duration of military service was eight years. Overall, 21 participants were dependent on dialysis, and 10 Veterans reported having an immediate family member (e.g., parent or sibling) with CKD. Hypertension was the most common comorbidity (9 participants).
Black Veterans with CKD experienced racism in clinical settings that produced physical and emotional stress and a strong sense of distrust in the healthcare system. They discussed ways in which racism produced emotional and physical stress. They also described a strong sense of distrust in the healthcare system coupled with a need to be hypervigilant during clinical encounters. When encountering racism, Veterans described bottling up their feelings, which sometimes led to maladaptive behavior (i.e., substance use). Veterans also talked about individual and collective positive strategies (i.e., faith) for coping with the stress of racism. Below are quotes from the Veterans in this study, who offered their perspective on receiving VA healthcare, revealing four prevalent themes.
Association of racism with emotional and physical stress: Veterans’ psychological reactions to racism invoked a sense of hopelessness. Some spoke about a perpetual trauma that produced constant pressure and all-encompassing worry. As one Veteran explained, “We’re under pressure all the time.”
- [Racism] makes me angry. It gives me headaches. It makes me irritable. It just—it makes me negative. It turns me into a negative person.
- I think it’ll give me high blood pressure. It’ll make me—by being high blood pressure, I mean, I’ll get angry over something that probably it should go my way, but it’s not going my way because they underestimate my intelligence or something, you know. So I believe that it do give me high blood pressure. It do probably make me run out here and eat something that I don’t want to eat because now I just wanna get away, you know.
Distrust in the healthcare system and hypervigilance: When in a healthcare setting, Veterans described feeling like they always had to prove themselves to medical staff and clinicians. They would arrive at their appointments worried about appearing presentable and perfect; even then, they described feeling judged and ignored. Participants described a strong sense of distrust.
- A poor Black man can’t go in a rich White man hospital and get the same treatment as a poor white man going in there with the same thing because they’re gonna take something that they have for white people and gonna want to tell me to go to the regular hospital.
- I’ve watched certain things. I’ve watched how the nurses—for the most part at dialysis they all use gloves, but I just watch how—the interaction with other patients that are White. They may spend time with them, talking with them, this or that, less time with me or the other African Americans that are in the clinic. But that’s their people. And so I don’t hold them—I don’t blame them for treating their people good; I blame us for treating our people bad.
- And it seemed like everything I asked [the physician] about— “Oh, don’t worry about that. Don’t worry.” I said, “What do you mean don’t worry about that? I asked you, I’m concerned about it.” “But I tell you when you need to worry.” So, I got rid of [that physician]. That one appointment I had with [them]…I got rid of [them] that same day because [they] didn’t show enough concern for my healthcare. [They]—you gotta listen to a patient in order to be able to treat that patient. [This physician] wasn’t willing to listen to me, so I seen we wasn’t gonna have a good relationship right there.
Bottling up of feelings and maladaptive behavior: The immediate behavioral reactions to racism often began with ignoring the racist event. Veterans stated that downplaying the initial encounter with discrimination and the subsequent stress helped to numb their ability to internalize their experience. They spoke about burying those feelings to preserve their sanity.
- I don’t—I try not to pay it any mind because, with me, really racism is like—I know I’m Black. I know a lot of people don’t like me because I’m Black. But after me serving in Vietnam and in Somalia, I don’t play the race card. I mean, I don’t even pay it no mind until it’s forced on me.
- [Racism] bothers me. It stresses me a little bit. But like I said, I try to keep that down because of my condition. I don’t need to be stressed out and lose this kidney.
Positive coping strategies: Veterans described a variety of strategies for managing the stress associated with racism. Several described engaging in activism as an outlet for coping with stress, while others spoke about using their faith as a way to cope.
- Well, that afflicts me because we’ve always been treated unfair, and it needs a lot of work. We need a lot of work on really turning ourselves around. I mean like, we have a lot of community involvement. I’m in a lot of community, different things with schools and all. I try to, you know, mentor young—I deal with the schools a lot in trying to mentor young people and all, to where, “pull your pants up, put a belt on.”
- I find myself talking to my husband a lot because he gets angry. For instance, he was stopped by police officers, and they were really, really nasty to him and had my daughter in the car and scared my baby to death.
- I’ll be honest with you. I pray about it. That helps me to calm down. My main thing, I get—I have hypertension, and that really bothered me, and I was very irritable. And like I said, I had to calm down. So, I usually pray about it. And once I prayed about it, it really calmed me down quite a bit because my—it took my mind off what the problem was. So, that’s kind of what I deal with as far as stress is concerned.
- I handle it by looking at sports, or just reading a book with my reader. Talk to my wife, my brother, or my son and talk to Jesus, my Lord and my savior.
Black Veterans with CKD described healthcare experiences that were retraumatizing and further worsened their psychological and physical responses to racism, potentially exacerbating CKD symptoms. Implementing care models that acknowledge racism as traumatic experience is one way VA and other healthcare institutions can lead the nation in developing anti-racist healthcare.
* This study was supported by HSR&D and QUERI.
Jenkins K, Keddem S, Bekele S, Augustine K, and Long J. Perspectives on racism in healthcare among black Veterans with chronic kidney disease. JAMA Network Open. 2022;5(5):e2211900.