Minoritized populations (persons of racial or ethnic background consisting of a minority percentage of the population) are more likely to develop kidney disease; however, they experience many barriers to quality care, including kidney disease education and adequate support1 Lack of access to these resources leads to suboptimal dialysis initiation, lack of permanent vascular access,2 and lower use of home dialysis and transplantation3 all of which increases morbidity and mortality.
Standard education and support for kidney disease, such as written or video educational materials, are not always adapted to cultural and health literacy differences among populations and have not demonstrated improvement in patient self-efficacy or engagement with self-management. Peer support programs have been successfully used to improve self-management and decision-making behaviors for patients with chronic disease and may offer a patient-centered approach to providing education and support. Increasing the role and scope of peer support may improve access to quality kidney care education through social and informational support and modeling of self-advocacy. The aim of this perspective is to describe the role of peer support for minoritized populations with kidney disease in improving access to quality kidney care.
What is Peer Support?
Peer support programs consist of trusted partnerships between individuals with similar sociodemographic background who have overcome similar health challenges. Peer support is based on the premise that those in a similar position are best able to support their peers through provision of shared experiences and practical information. Peer support has been used in a wide array of chronic diseases to improve self-management and outcomes, including cancer, depression,4 illicit drug use5 and diabetes.6 Peer delivered services can contribute to positive adjustment through social support, can provide resolutions of issues through experiential knowledge, and may mediate positive behavior change as credible role models.7 Delivery mechanisms vary from informal social support and nonjudgmental listening from peers to formalized peer meetings through kidney care programs. Meetings may be one-on-one or in groups, online, over telephone, or face to face, and may be held in a variety of settings such as home, hospital, and community.8
Evidence for Peer Support in Kidney Disease
Peer support can augment traditional models of chronic kidney disease care, through peer validation of patient experiences, pragmatic resources for living with disease, information sharing, and sharing first-hand experiences. Peer support in chronic kidney disease has been shown to improve the transition to dialysis, informed decision-making about end-of-life and modality decision-making, emotional support regarding the challenges of dialysis, and adherence and self-management while receiving dialysis.9
Peer support for people with advanced chronic kidney disease has demonstrated success in patients’ experience transitioning to dialysis. This is a particularly challenging time where complex information has to be processed in order to make difficult decisions,S1 and peer support can give access to practical information about kidney disease based on lived experience, empathy and understanding, positive role models of coping with treatment for the future, as well as helping patients adapt to chronic illness by normalizing adherence to demanding treatment regimens and increasing sense of empowerment.
Peer support may also play an important role in dialysis decision-making. Patients and caregivers may often feel a lack of decisional power in dialysis decision-making due to the complexity of the presented information and a power dynamic between themselves and the provider. Especially for minoritized individuals, the role of community and experiences of their family and peers play an invaluable role in shaping decision-making. Being able to discuss the decision to pursue home dialysis and transplant with other patients who undergo these treatments may normalize the dialysis experience, reduce fear and apprehension about decision-making, and improve decisional self-efficacy during the process of dialysis initiation. One study evaluating the feasibility and acceptability of peer support among Latinx individuals who are of undocumented immigration status receiving emergency dialysis found that peer support built camaraderie and emotional supportS2 and played a major role in the motivation and resilience needed to undergo transplantation.S3 Transplant recipients have expressed a need to develop more robust peer support to face the multiple hurdles associated with kidney transplantation.S4 Peer support has also been effective with end-of-life planning and decision-making for people on dialysis; one peer intervention utilizing the National Kidney Foundation’s peer mentoring program found that peer support had a significant effect on advanced directive outcomes, including completion of advanced directives and level of comfort discussing end-of-life care.S5
Peer support also has demonstrated improvement in patient engagement with care, improvements in psychological well-being, dialysis self-management,S6 and dialysis adherence for patients receiving hemodialysis and peritoneal dialysis. One study of patients receiving dialysis and peer support noted those receiving peer support had fewer missed treatments; as well as improvement in dialysis knowledge, self-efficacy, perceived social support, and health-related quality of life.9 Preliminary results from a recent multicenter trial showed that peer support was effective in reducing hospitalizations among patients receiving dialysis but that this effect was population-specific.S7 For patients receiving home dialysis, the self-management ability of home dialysis patients receiving peer support improved, as did biochemical indicators of peritoneal dialysis adequacy.S8 Patient empowerment through peer support can improve self-efficacy, awareness of lifestyle restrictions, and adherence to dialysis.
How Peer Support Can Mitigate Disparities in Access to Kidney Care and Education
The addition of peer support for minoritized populations and populations with low health literacy or limited proficiency in the predominant language may be invaluable to overcome systemic barriers to culture and language concordant information and education (Figure 1). First, the patient experience of discrimination and racism is likely to affect willingness to engage in traditional modes of education and patient care. For example, dialysis patients identifying as Black in the US reported experiencing racism and discrimination and felt distrust in the healthcare system.S9 Similarly, undocumented immigrants with kidney failure have reported discrimination due to language barriers or immigration status.S3,S10 Cultural differences, such as family-oriented decision-making and cultural values, may not be considered fully with traditional forms of kidney disease education and support. Healthcare professionals infrequently understand the enormous influence of culture, such as religiosity or fatalism, on patient responses to medical issues such as healing and suffering, and on patient-physician relationships.S11 Peer support can help circumvent barriers to care related to mistrust and miscommunication.
Figure 1.
Evidence for benefits of peer support in minoritized populations with kidney disease. CKD, chronic kidney disease.
The value of peer support for minoritized populations has been demonstrated widely across the spectrum of chronic disease; in one study utilizing culture concordant peer support for Latinx individuals with breast cancer, peer support helped participants express their feelings, reduce feelings of anxiety and depression, learn to ask questions, and express their needs.S12 For Latinx populations with type 2 diabetes, peer support is associated with patient empowerment and self-efficacy.S13 Culture and race concordant peer support has been associated with more improvement in subjective well-being and lower anxiety in African Americans receiving dialysis compared with White populations.S4 Adaptation of peer support programs to address the unique needs of these populations may serve to improve patient-centered care and lead to improved clinical and patient outcomes.
Limitations of peer support implementation
In order for a successful peer support program integration into current care structures, program leaders must consider the patient, provider, and systemic barriers and facilitators to program implementation. On the patient level, key facilitators to patient adoption and uptake include inclusivity and connectivity between mentor-mentee pairs and personalized peer support care, whereas barriers include poor relationship dynamics as well as poor support and delivery of services.S14 Some ways to improve upon these barriers include a warm and supportive environment through appropriate peer training and establishing connectivity between mentor-mentee pairs through matching on similar characteristics and flexibility in the program’s delivery. On the clinician level, clinician promotion is a significant facilitator of peer support programs, whereas low staff referrals and difficulty matching mentor-mentee pairs present challenges to the process.S14 Therefore, robust peer mentorship programs require structured support systems that facilitate ongoing recruitment of both mentors and mentees and an iteratively refined patient-centered training program. Lastly, systemic barriers in improving the reach and implementation of robust peer support programs may be due to lack of prioritization of kidney care peer support by national organization guidelines and federal policy. Promotion of peer support by governing agencies and national organizations is crucial to improve uptake and reach through incorporation of peer support into payment structures and guideline-directed care.
Despite these hurdles, implementation of kidney care peer support programs has demonstrated feasibility.S15 Peer support programs all over the world, including the US, UK, Taiwan, Iran, the Netherlands, Indonesia, and China have demonstrated that peer support positively impacts psychosocial outcomes, disease self-management, and healthcare engagement.S16 The success of peer support services for patients with kidney disease in practice settings across the world highlights a future role in achieving equity in kidney disease care for minoritized and underserved people.
Conclusion
Peer support programs play an important role in the education, adherence, and quality of care delivery for patients with kidney disease, especially for those from vulnerable or socially disadvantaged backgrounds. Support from health systems and payors to integrate robust and tailored peer mentorship programs into nephrology care holds promise to improve care for minoritized populations with kidney disease.
Disclosure
All the authors declared no competing interests.
Footnotes
Supplementary References
Supplementary Material
Supplementary References
References
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