Dialysis Patient Perspectives on CKD Advocacy: A Semistructured Interview Study

Abstract

Background: Health advocacy groups provide education, raise public awareness, and engage in legislative, scientific, and regulatory processes to advance funding and treatments for many diseases. Despite a high burden of chronic kidney disease (CKD) in the United States, public awareness and research funding lag behind those for other disease states. We undertook this study of patients receiving maintenance dialysis to describe knowledge and beliefs about CKD advocacy, understand perceptions regarding advocacy participation, and elicit ideas for generating more advocacy in the dialysis community.

Study design: Qualitative study.

Setting & participants: 48 patients (89% response rate) receiving in-center hemodialysis (n=39), home hemodialysis (n=4), and peritoneal dialysis (n=5) from 14 US states.

Methodology: Semistructured interviews.

Analytical approach: Transcripts were thematically analyzed.

Results: 5 themes describing patient perspectives on CKD advocacy were identified: (1) advocacy awareness (advocacy vs engagement knowledge, concrete knowledge, CKD publicity), (2) willingness to participate (personal qualities, internal efficacy, external efficacy), (3) motivations (altruism, providing a purpose, advancement of personal health, self-education), (4) resource availability (time, financial and transportation, health status), and (5) mobilization experience (key figure, mobilization network). Participants displayed operational understanding of advocacy but generally lacked knowledge about specific opportunities for participation. Personal qualities and external efficacy were perceived as important for advocacy participation, as were motivating factors such as altruism and self-education. Resources factored heavily into perceived participation ability. Most participants identified a key figure who invited them to participate in advocacy. In-person patient-delivered communication about advocacy opportunities was identified as critical to enhancing CKD advocacy among patients living on dialysis therapy.

Limitations: Potential selection bias and inclusion of only English-speaking participants may limit generalizability.

Conclusions: Overall, our results suggest that there may be untapped advocacy potential within the dialysis community and highlight the need for local in-person patient-led initiatives to increase patient involvement in CKD advocacy.

Keywords: Health advocacy; advocacy participation; altruism; chronic kidney disease (CKD); dialysis; dialysis community; disease awareness; education; fundraising; interview; lobbying; patient activism; patient engagement; qualitative research.