| Literature DB >> 34533567 |
Lilia Cervantes1,2,3, Katherine Rizzolo4, Alaina L Carr5, John F Steiner6, Michel Chonchol4, Neil Powe7,8, Daniel Cukor9, Romana Hasnain-Wynia2.
Abstract
Importance: Latinx individuals with end-stage kidney disease (ESKD) constitute 19% of US patients receiving in-center scheduled hemodialysis. Compared with non-Latinx White patients, Latinx individuals often face poor economic, environmental, and living circumstances. The challenges for health care professionals engendered by these circumstances when Latinx individuals present with ESKD and possible solutions have not been well described. Objective: To examine the perceptions of interdisciplinary health care professionals who work in dialysis centers in urban settings with large racial and ethnic minority populations about how social challenges affect the care of Latinx patients with ESKD. Design, Setting, and Participants: This qualitative study administered semistructured interviews of interdisciplinary health care professionals at 4 urban dialysis centers in Denver, Colorado, from April 1 to June 30, 2019. Interviews were audio recorded, transcribed verbatim, and analyzed using thematic analysis. Main Outcomes and Measures: Themes and subthemes of barriers to care.Entities:
Mesh:
Year: 2021 PMID: 34533567 PMCID: PMC8449281 DOI: 10.1001/jamanetworkopen.2021.25838
Source DB: PubMed Journal: JAMA Netw Open ISSN: 2574-3805
Demographic Characteristics of 30 Interdisciplinary Dialysis Center Health Care Professionals
| Characteristic | Finding |
|---|---|
| Age, mean (SD), y | 42.0 (11.6) |
| Female sex | 23 (77.0) |
| Male sex | 7 (23.3) |
| Race and ethnicity | |
| Asian | 2 (6.6) |
| Black | 2 (6.6) |
| Latinx | 9 (30.0) |
| Non-Latinx White | 17 (56.6) |
| Bilingual | 12 (40.0) |
| Time providing direct dialysis care, mean (SD), y | 9.8 (6.4) |
| Discipline | |
| Clinical social worker | 4 (12.3) |
| Hemodialysis technician | 7 (23.3) |
| Registered dietitian | 3 (10.0) |
| Physician assistant | 1 (3.3) |
| Nurse practitioner | 1 (3.3) |
| Registered nurse | 8 (26.6) |
| Physician | 6 (20.0) |
Data are presented as number (percentage) of participants unless otherwise indicated.
Themes and Subthemes With Illustrative Quotes From Health Care Professionals
| Themes and subthemes | Illustrative quotes |
|---|---|
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| Language interpretation by telephone | “Most patients are not comfortable with it [telephone interpretation]. It really would be so much easier and more comfortable if you had someone that spoke their language in front of them. It would be nice if some of the clinicians could speak other languages.” (nurse) |
| In-person language interpretation | “[Our dialysis organization] prefers that we use the language line because it is less costly than an in-person language interpreter…sometimes they allow us to have an in-center interpreter but only once per month.” (social worker) |
| Burden of ad hoc interpretation | “There’s nobody here to interpret. There are two of us that speak Spanish and I know that when we’re not here to help translate but they don’t use a phone interpreter. I don’t even know that the dialysis staff know what’s available, honestly. These patients don’t understand the importance of their renal therapy because there’s no one there to interpret. They have no idea what they’re being told. That’s why I try to be there to interpret for them.” (hemodialysis technician) |
| Low-quality health care | “I see limited English proficiency as a huge barrier. So many different languages. I can sometimes figure out what Spanish speakers are saying but instructing new patients on a diet that don’t understand English is a barrier.” (registered dietitian) |
| Lack of language- and culturally concordant materials | “You’re sending them home with a handout in a totally different language and you’re expecting them to be adherent? How do you expect them to use this at home? I just wish that there was a way we could have all of these material in Spanish, for different cultures, so that everyone is getting information and not feeling they’re stuck or confused.” (registered nurse) |
| Health literacy levels | “[Low health literacy] prevents them from understanding what we’ve recommended…so, it’s not that they didn’t hear what was being said but it wasn’t explained in a way that made sense.” (physician) |
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| Unreliable transportation | “Everyone that’s poor has issues with transportation. It’s always been an issue. Our city is particularly horrible with transportation for these poor patients.” (registered nurse) |
| Economic instability | “And then I have patients who will cancel other appointments because they know that their Medicare is going to pay 80% and they're going to get billed for 20% or when they walk into the office they are going to get a higher co-pay. That was another conversation I had this morning with a patient. He was really upset. He's been paying these co-pays for other doctors’ appointments and he can't afford them.” (social worker) |
| Loss of insurance benefits | “If I don’t think that the patient can fill out paperwork at home and they don’t have family that can help them out either, then I sit down with them and help them fill out paperwork. I also have financial coordinators that can help them fill out other financial paperwork.” (social worker) |
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| Social isolation | This patient fell and I asked her, ‘Did you tell your daughter?’and she responded, ‘Oh, she’s busy.’ The patient says that she is home all day by herself.” (hemodialysis technician) |
| Hopelessness | “If they feel depressed, they don’t care about their health and they don’t come to treatment. There’s a patient that said, ‘I’m done, I don’t want to do dialysis no more. If I don’t get on the transplant list again, I’m just going to |
| Stigma of illness | “The dietary restrictions that they always tell me about and especially culturally the foods that they want to eat, that they like to eat, they can't eat. That's going to affect how you feel and how you can participate in your family gatherings when you're not supposed to be eating certain things and everybody else is eating them.” (physician) |
| Balancing personal social challenges | “We have a young woman that has so much going on. She has 3 kids with an ex-husband and son in jail. As a mom, she puts her needs last and those of her kids first. So, she puts dialysis on the back burner because she has to put all of this other stuff first. I kind of understand why she’s not in dialysis and why it’s not a priority for her. She has so many issues.” (physician assistant) |
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| Culturally responsive care | “We have an immigrant that never received education. She doesn’t speak anything but her native language. I told this NP [nurse practitioner], ‘You’re talking to her in English and you’re giving her information in English. You’re talking down to her and then you’re calling her stupid? It’s not that she’s stupid. You’re not communicating with her well.’ So, these are things that we struggle with that take a lot of time to resolve to prevent harm because you have a provider that is getting upset with patients that don’t speak English instead of taking their time to realize that there are language, education, and cultural barriers.” (social worker) |
| Patient empowerment and activation | “And I think sometimes you lose focus. Just because this clinic, they get audited by the state, and I know that there’s a lot of things that we can work on to improve and make sure that this clinic can be better. And I just think that people just need to focus on, okay, we’ll do the policy but don’t lose track of the patients. Because the patients, these are human beings, they’re not just, you know, like things that come and go. Like these are people that actually want to.” (hemodialysis technician) |
| Supporting primary caregivers | “I feel like to truly understand the need for renal therapy, they need medical knowledge, and if a family member is present, that is really helpful. We don’t know if they talk about their illness with their family. So, if spouse or child comes to dialysis, we try to have the conversation.” (physician assistant) |
| Peer support with navigation of the health care system | “Many of us can’t relate but someone who comes from their community would have an easier time connecting and could talk to them about kidney transplantation and maybe have more of an impact than the rest of us.” (physician) |