Is a peer support group feasible, acceptable, and of value for undocumented immigrants with kidney failure who rely on emergency dialysis?
In this qualitative study of 23 undocumented immigrants with kidney failure receiving emergency dialysis, a peer support group intervention had high recruitment, retention, and delivery rates, suggesting it was feasible. Interviews suggested that the intervention was acceptable and valued by participants, who stated that it built camaraderie and a means to share strategies for self-advocacy.
These findings suggest that a peer support group may be a patient-centered strategy to provide peer emotional support and camaraderie for undocumented immigrants with kidney failure.
Most undocumented immigrants with kidney failure rely on emergency dialysis (defined as dialysis after a patient presents as critically ill) and experience significant depression and anxiety and high mortality. Culturally and language-concordant peer support group interventions may be associated with reduced depression and anxiety and may provide emotional support.
To investigate the feasibility and acceptability of a single-group peer support group intervention.
Design, setting, and participants
This qualitative and single-group prospective study for undocumented immigrants with kidney failure receiving emergency dialysis was conducted in Denver, Colorado, from December 2017 to July 2018. The 6-month intervention included peer support group meetings in the hospital while participants were hospitalized for emergency dialysis. Data were analyzed from March to June 2022.
Main outcomes and measures
To assess feasibility, the recruitment, retention, implementation, and delivery for the intervention were tracked. To measure acceptability, interviews were conducted with participants using a structured format. To assess the value of the peer support group intervention, themes and subthemes were identified from interviews with participants and group meetings.
Of 27 undocumented immigrants with kidney failure receiving emergency dialysis, 23 participants (9 females [39.1%] and 14 males [60.9%]; mean [SD] age, 47  years) agreed to participate (recruitment rate, 85.2%). Among them, 5 individuals withdrew and did not attend meetings and 18 participants (retention rate, 78.3%) attended a mean of 6 of 12 meetings (50.0%). From interviews and meetings, 3 themes, with associated subthemes, were identified: camaraderie and emotional support from peers (subthemes: peer support is vital for people newly diagnosed with kidney failure, safe space to build relationships and share hardship with peers, hospital setting for peer support is ideal, solidarity to survive and change policy, and sustainability of the peer support group), solutions to improve care and resilience (subthemes: self-advocacy, self-motivation and optimism, kidney disease education, emotional support from peers caregivers, and faith), and emotional and physical aspects of receiving emergency dialysis (subthemes: psychosocial and physical distress, mixed experiences with language-concordant care, emotional exhaustion from end-of-life conversations, and gratitude for clinicians).
Conclusions and relevance
This study found that peer support group intervention achieved feasibility and acceptability. The findings suggest that a peer support group may be a patient-centered strategy to build camaraderie and provide emotional support in kidney failure, especially for socially marginalized uninsured populations who report limited English proficiency.
Latinx individuals experience a 2.1-fold greater incidence of kidney failure than non-Latinx White individuals and face structural racism and discrimination that contribute to kidney health disparities.1 Compared with non-Latinx White individuals, Latinx individuals are less likely to receive predialysis nephrology care2 or a living donor kidney transplant3 or be treated with home dialysis therapies.4 Latinx individuals with kidney failure face a disproportionate burden of social challenges, including poverty, lower levels of education, and limited English proficiency.5-7 People with undocumented US citizenship status (ie, people who entered the US without proper documentation) are primarily Latinx and face additional challenges. Undocumented immigrants are barred from all Medicare health care coverage and the Patient Protection and Affordable Care Act marketplace exchange plans.8 In most states, availability of dialysis is limited to emergency dialysis, defined as hospital-based dialysis when the patient is critically ill.9 Compared with scheduled, thrice-weekly dialysis, emergency dialysis was found to be associated with a higher hospitalization rate,10 4 times the yearly cost,11,12 and 5-fold and 14-fold higher mortality rates at 1 and 5 years, respectively10 Undocumented individuals receiving emergency dialysis face significant psychosocial distress associated with the weekly accumulation of symptoms, frequent near-death experiences, unpredictable access to dialysis, and a high level of burden on their caregivers.13-15
Undocumented immigrants receiving emergency dialysis have reported high levels of depression, anxiety, and reliance on family and peers for support.6,15-17 Peer support group programs provide patients and their caregivers with social, emotional, and health information support.18-20 In a systematic review,19 more than two-thirds of peer support programs reported improvement in health outcomes. To our knowledge, peer support interventions for undocumented Latinx individuals receiving emergency dialysis have not previously been studied. In this study, we evaluated the feasibility and acceptability of a single-group peer support group intervention during hospitalization for undocumented individuals receiving emergency dialysis.
This was a 6-month, single-group, prospective qualitative study of a peer support group intervention. The Colorado Multiple Institutional Review Board (COMIRB) approved this study. All study participants provided written informed consent. We used the Consolidated Criteria for Reporting Qualitative Research (COREQ) reporting guideline.
Eligible participants were adult, undocumented, English- or Spanish-speaking immigrants who self-identified as Latinx/o/a, Hispanic, or both; were diagnosed with kidney failure; and were typically admitted for emergency dialysis on a Tuesday. Race demographics were not collected; only ethnicity was collected given that this was part of inclusion criteria. Institutional policy was to admit these patients overnight every 7 days, and Tuesday was selected for this study because on that day, there were a mean of 14 patients hospitalized for emergency dialysis.
The study lead investigator (L.C.) identified patients, and a culturally and language-concordant research assistant approached participants face to face for study enrollment in December 2017 and January 2018. Participants received $20 compensation for enrollment and $5 for each meeting they attended.
Peer Support Group Intervention
Participants attended 90-minute support group meetings in a hospital conference room on Tuesday evenings while hospitalized for emergency dialysis. To build trust and personalismo (personalized relationships, a Latinx value), meetings had the following structure. (1) The research assistant led meetings. (2) Participants collectively selected topics. (3) Every meeting was started with an icebreaker. (4) A dinner prepared according to a kidney-friendly diet was provided. (5) An optional arts and crafts activity was available. (6) One caregiver per participant was invited. (7) Meeting frequency was weekly for 1 month followed by every 2 weeks for 2 months and then monthly for 3 months. The peer support group intervention lasted 6 months, and there were 12 meetings.
Outcome Measures and Data Collection
Primary outcomes were feasibility and acceptability, 2 preliminary steps toward the design of an intervention trial. To assess feasibility, we tracked recruitment, retention, and intervention implementation and delivery (ie, frequency, number, and duration of meetings). To measure acceptability, we conducted interviews with participants using a structured format. Meetings were audio-recorded, translated, and transcribed to assess the value of peer support relationships and analyze themes that participants emphasized. Verbatim quotes from meetings and interviews conducted in Spanish were translated to English by a translation company (Datagain). Exploratory measures were collected at baseline and study completion. Anxiety and depression were assessed using the Generalized Anxiety Disorder 7-item scale (GAD-7) and Patient Health Questionnaire 9 (PHQ-9). The GAD-7 includes 7 symptoms of generalized anxiety disorder, and the PHQ-9 includes 9 criteria for depression, with 1 item asking about ideation of suicidal behavior or self-harm. Scores are calculated based on how frequently a person experienced symptoms over the last 2 weeks (eg, a “not at all” response is scored as 0, “several days” as 1, “more than half the days” as 2, and “nearly every day” as 3). The sum of these responses gives a total score. For the PHQ-9, a score of 4 or less is minimal depression, 5 to 14 is mild (5-9) to moderate (10-14) depression, and greater than 14 is moderate severe (15-19) to severe depression (20-27). For the GAD-7, a score of 0 to 4 is minimal anxiety, 5 to 9 is mild anxiety, 10 to 14 is moderate anxiety, and greater than 15 is severe anxiety.
Interview transcripts were analyzed by 4 study members (L.C., K.R., K.A.I., and C.H.) of the COMIRB-approved study team using Excel software (Microsoft) from March 1 to June 1, 2022. In this team, 2 members (L.C. and K.A.I.; internal medicine physicians) had previous clinical interactions with participants, while 2 other members (K.R. [nephrology physician] and C.H. [epidemiologist]) did not. Coding and analysis were conducted according to principles of grounded theory and thematic analysis.21,22 Line-by-line coding was performed to inductively identify concepts. Similar concepts were grouped into initial themes and subthemes, and then conceptual links among them were identified. Consensus on themes and subthemes was reached after review of the analysis and discussion to ensure that findings reflected the full range and depth of data.21,22 Our study was not powered to detect changes in exploratory measures, and we thus provide results at baseline only.
A total of 23 Latinx adults participated (9 females [39.1%] and 14 males [60.9%]; mean [SD] age, 47  years) among 27 individuals who were approached (Table 1), for a recruitment rate of 85.2%. There were 12 meetings, with a mean (SD) duration of 88 (19) minutes. During the first meeting, participants selected topics they wanted to discuss (eTable in Supplement 1).
Feasibility and Acceptability
Of 23 participants, 5 participants withdrew prior to meetings and 18 participants (retention rate, 78.3%) attended a mean of 6 meetings (50.0%). Reasons for withdrawing included that the participant moved to Mexico (2 participants), transitioned to a different inpatient dialysis schedule (2 participants), and transitioned to outpatient scheduled dialysis (1 participant). No common patterns of missing meetings were identified. Reasons for missing a meeting included admission to the medical intensive care unit, being on isolation status, a change in the date of weekly hospital admission, and admission to another hospital. We identified 3 themes. The first 2 themes (camaraderie and emotional support from peers and solutions to improve care and resilience) related to the acceptability of the peer support intervention, and the third theme (emotional and physical aspects of receiving emergency dialysis) related to experiences receiving emergency hemodialysis (Table 2).
Theme: Camaraderie and Emotional Support From Peers
Peer Support Is Vital for People Newly Diagnosed With Kidney Failure
Participants described emotional distress when first learning of their diagnosis because they did not understand their diagnosis, prognosis, or what it would mean to receive only emergency dialysis. One participant said, “I was devastated when they told me about my kidneys. I wanted to die. …I think someone newly diagnosed with kidney failure must be encouraged.” Participants also described the importance of sharing about symptom accumulation leading up to emergency dialysis with those who were newly diagnosed so they could “learn the ropes.”
Safe Space to Build Relationships and Share Hardship With Peers
Participants described that it was difficult to get to know each other in the inpatient dialysis center setting, while the peer support group setting allowed for more personalized connections and relationship building. One participant said, “When you are sitting down at a dialysis chair, you really don’t get to interact much with others compared to getting to know each other at these meetings.” Participants also felt camaraderie and the importance of a safe space for sharing personal hardship and learning from each other about their illness. They described challenges in sharing their physical symptoms and anxiety about death with family. One participant said, “it can be difficult…to talk to your kids because you don’t want your kids to become very depressed. They might try to commit suicide or do poorly in school.” Another participant said, “it’s important to ask questions in a way that you don’t feel judged. …here, no one will scold you.”
Hospital Setting for Peer Support Is Ideal
Participants described feeling physical distress after having “so much fluid removed” after 7 days without dialysis. Meeting in the hospital setting was ideal for participants who were physically stressed and needed to cope with emergency dialysis. One participant said, “It was a good way to interact with people because it helped me cope with the stress from dialysis. …after getting done with dialysis, you don’t always feel your best. …I really liked getting together with other people who are going through this.”
Solidarity to Survive and Change Policy
Group members supported each other in advocating for receipt of outpatient dialysis and reducing financial burdens by obtaining private health insurance. Participants decided they would fundraise and use the money to support those who needed health insurance. One participant said, “we don’t have money to pay for medication…but we all have to work. …we can donate and receive according to our finances. This is what this group is about—if we unite, we can get through this.” The group also developed a messaging application (WhatsApp) and social media (Facebook) group for members and their families to communicate about fundraising, social resources, and advocacy.
Sustainability of Peer Support Group
Participants expressed enjoying group sessions and made plans to spend time together outside the hospital setting. When the study was coming to an end, participants formalized the peer group by developing a nonprofit organization called Club Riñones Latinos (Latino Kidney Club). One participant said, “we want to make a group because we all have kidney issues and not a lot of information. …motivating ourselves is the best strategy.” Another participant said, “We have in mind to create a group, but we don’t know how to build relationships with funders. …we wouldn’t be talking about creating this group if you hadn’t brought us together.”
Theme: Solutions to Improve Care and Resilience
Self-advocacy was discussed during every meeting as a means for participants to improve their care. For example, participants discussed downloading a phone translation application so that they could ask clinical care–related questions. They also shared thoughts about the “chain of command” and understanding which individuals they could access if they needed to address a hospital issue. They spoke about avoiding physicians who treated them badly. They noted the importance of knowing one’s body and being adamant when dialysis needed to be stopped to avoid excess fluid removal.
Self-motivation and Optimism
Participants described that staying healthy was a personal decision because individuals can choose to believe that they are going to die or live a long life. One participant said, “I haven’t been doing this for long, but…when they started me on dialysis…a lot of people said I was going to die. But kidney failure will not kill you if you don’t want it to. You can be okay if you want. You can live a lot of years. …it’s all up to you.”
Improve Kidney Disease Education
Participants described learning about kidney disease on their own. Some participants formed close relationships with their clinicians and asked questions about their kidney disease. One participant said, “There’s a point that I think is very important: to have a very open communication with your doctor. I have done this, and thank God, because she’s helped me a lot.” They also talked about the importance of being honest with their dietitians about culturally traditional foods so that they could receive clarity on dietary restrictions.
Emotional Support From Peers and Caregivers
Participants described that their family, caregivers, and peers provided support and motivation to stay healthy. With respect to peer support, one participant said, “I was feeling very depressed at the beginning, and then once I was going through the program and attending the meetings, it was giving me more hope.” With respect to family, 1 participant said, “I think it’s also having a partner that says, ‘Hey, how are you? Snap out of it!’ Or having someone that asks you, ‘How do you feel?’”
Faith played a major role among participants in coping with emergency dialysis. Participants described praying often and using their faith to foster resilience and gratitude for life. One participant said, “I have a lot of faith in God, and I pray a lot. …I understand that everything happens for a reason and that everything happens on God’s time. …God is going to give me time to meet my grandkids and spend time with them.”
Theme: Emotional and Physical Aspects of Receiving Emergency Dialysis
Psychosocial and Physical Distress
Participants described feelings of depression and weekly anxiety from symptoms. One participant said, “I get a panic attack because I don’t want to die. …I think that if I go to sleep that I won’t wake up again.”
Mixed Experiences With Language-Concordant Care
Participants had varied experiences receiving language-concordant care, including having to self-advocate for an interpreter, working with interpreters who did not interpret well, and asking for Spanish educational materials after receiving them in English. One participant said, “there are good and not-so-good interpreters. …There are interpreters who say whatever they want and I’ve had to say, ‘Excuse me, I didn’t say that.’”
Emotional Exhaustion From End-of-Life Conversations
Participants reported feeling emotionally weighed down by weekly conversations about end-of-life care and advance directives. These conversations took place weekly because they were part of the hospital admission history and physical. Participants reported that these conversations exacerbated their sense that death was imminent. They also described that talking about or making plans for death were taboo in their culture, and they wondered if their clinicians were discussing end-of-life care because they wanted the participant to die. One participant said, “when clinicians talk about advance directives and end-of-life [care], I’m not sure if they want to inform me or scare me. …is this the doctor’s way out of responsibility because they want us to die?” Others said they felt it was a good idea to be prepared and make plans early.
Participants expressed gratitude toward clinicians with whom they had built close relationships during weekly hospital admissions. Participants said they were aware that clinicians and the hospital were required to provide emergency dialysis rather than standard outpatient dialysis because of state policies. Participants also expressed gratitude for emergency dialysis, stating that in their home countries, they would have died because emergency dialysis was not offered.
In this single-group, prospective qualitative study, we found that a peer support group support intervention for undocumented immigrants with kidney failure receiving emergency dialysis was feasible and acceptable. To our knowledge, this is the first prospective peer support group intervention for this population and so may represent a novel strategy to provide emotional support to a uniquely marginalized community whose members face mistrust and discrimination and lack health care coverage.
Peer support may represent a powerful tool associated with an improved illness experience among undocumented immigrants receiving emergency dialysis. In previous studies of patients experiencing chronic kidney disease, peer support was associated with improved self-efficacy and emotional well-being, increased aid in treatment decisions, and increased help for patients developing coping strategies to manage their conditions.23,24 For people with kidney disease who are from minoritized racial and ethnic backgrounds, peers with similar cultural backgrounds and lived experiences have been found to be an important source of support.7,19,25 In 1 study26 using culture-concordant peer support for Latinx individuals with breast cancer, participants reported that peer support helped them express their feelings, feel less anxious and depressed, learn to ask questions, and express their needs to health care professionals and made them feel that someone understood their experience. A peer-led and culturally tailored support group intervention for Mexican-American individuals with type 2 diabetes was associated with increased empowerment and self-efficacy among participants.27 Our data suggest the potential value of peer support for improved depression and anxiety, as well as the provision of emotional support through sharing of lived experiences, self-advocacy, and coping mechanisms.
Participants in our study shared struggles with emergency dialysis, such as anxiety and depression, and encouraged each other to discuss these issues with their families and clinicians. Individuals encouraged each other to advocate for themselves while hospitalized by asking for interpreters or knowing their dry weight to avoid sequelae of hypotension in dialysis. Moreover, participants discussed their awareness of the injustice of not being able to receive optimal treatment owing to their immigration status; however, they also said they felt gratitude for the care received because dialysis was not available in their home countries.
An important finding from our study was the use of peer support to promote self-advocacy with policymakers. After this study, participants organized themselves and engaged in research and advocacy with the study team (L.C. and C.C.). Participants formed the Latino Kidney Club, and they developed their own social media and messaging application groups to communicate about advocacy, fundraising, and social resources. Additionally, many participants partnered with L.C. and C.C. to engage in community-based research and to publish studies finding worse outcomes with emergency dialysis.14,15 In 2019, a coalition of patients and partners (eg, clinicians, community organizations, and policy leaders) successfully expanded access to standard outpatient hemodialysis for undocumented immigrants with kidney failure through a billing change in Emergency Medicaid.9,28 Colorado became the twelfth state to explicitly expand health care coverage of standard dialysis through Emergency Medicaid; 4 years later, 20 states provided statewide health care coverage of standard outpatient hemodialysis.29
This study may have key implications for patients with chronic disease who are members of marginalized populations. Other studies examining the role of peer-to-peer mentoring for patients receiving dialysis found that patients receiving dialysis who were mentored had fewer missed dialysis treatments, improved end-of-life discussions, and increased self-efficacy and social support.30-32 Implementing a peer support program requires identifying, educating, and supervising peer mentors; a 2023 study33 found that this was feasible, and multiple organizations, including the National Kidney Foundation and Centers for Medicare & Medicaid Services, offer peer-mentoring services for patients receiving dialysis.34-36 However, challenges remain, including engagement of patients receiving mentoring and consistent training for mentors. Peer mentorship may also be held outside the dialysis center, allowing for greater privacy, but would require modifying the workflow of the dialysis unit. For undocumented immigrants receiving emergency dialysis, peer support offered a source of companionship in our study. A future randomized clinical trial of peer support may investigate improved depression, anxiety, and emotional resilience through sharing coping mechanisms. Lastly, our findings suggest that peer support may be a powerful tool to promote self-advocacy and patient engagement in treatment choices.
This study has several limitations. Our work included a small sample size and recruited from a single hospital system; therefore, our findings may not be generalizable. Policies for emergency hemodialysis vary by institution, and there may be differences in patient lived experience in access to dialysis care. Furthermore, all study participants were Latinx; therefore, their illness experience cannot be generalized to other racial and ethnic groups. An additional limitation of this study is that race was not collected. Latinx individuals self-report being of any race. Although race is a social construct, it is important to collect race data because systemic and structural racism are pervasive and fundamental causes of health disparities through discrimination and unequal distribution of resources, wealth, and power. According to the US Census, Colorado Latinos as a group self-report as 1.7% American Indian, 3.6% Asian, 4.7% Black, and 86.5% White.37
In this qualitative study, undocumented immigrants with kidney failure who relied on emergency dialysis described wanting to formalize a peer support group because they reported camaraderie and learned strategies to improve their resilience, including self-advocacy and optimism. Our results suggest that group peer support may be feasible and acceptable; it may also provide a patient-centered strategy to address the need for depression, anxiety, and social support services among patients with kidney failure, especially for socially marginalized, uninsured populations whose members report limited English proficiency.
Accepted for Publication: May 4, 2023.
Published: June 21, 2023. doi:10.1001/jamanetworkopen.2023.19277
Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2023 Cervantes L et al. JAMA Network Open.
Concept and design: Cervantes, Camacho, Alamillo, Chandler, Chonchol, Welles, Steiner, Hasnain-Wynia.
Acquisition, analysis, or interpretation of data: Cervantes, Rizzolo, Indovina, Hazel, Welles, Steiner.
Drafting of the manuscript: Cervantes, Rizzolo, Indovina, Hazel, Welles.
Critical revision of the manuscript for important intellectual content: All authors.
Statistical analysis: Cervantes, Indovina, Welles.
Obtained funding: Cervantes.
Administrative, technical, or material support: Cervantes, Camacho, Alamillo, Chandler.
Supervision: Cervantes, Chonchol, Steiner, Hasnain-Wynia.
Conflict of Interest Disclosures: Dr Cervantes reported serving on several boards, including for the Center for Health Progress, Vuela for Health, Public Benefits Corporation Colorado Connect, and Denver Health and Hospital Authority and receiving grants from the National Institutes of Health (NIH) National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) during the conduct of the study. Dr Rizzolo reported receiving grants from the NIH NIDDK during the conduct of the study. Dr Chonchol reported receiving grants from the NIH NIDDK during the conduct of the study and outside the submitted work. Dr Steiner reported receiving grants from the NIH outside the submitted work. No other disclosures were reported.
Funding/Support: This study was supported by internal funding from the University of Colorado School of Medicine.
Role of the Funder/Sponsor: The funder had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
Data Sharing Statement: See Supplement 2.
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