Enhancing Quality of Life in African American Patients with Chronic Kidney Disease: An Evidence-Based Intervention.

This study aimed to assess the effectiveness of achronic kidney disease (CKD) peer coach's educational intervention on the quality of life of African-American individuals with CKD. This study employed an experimental research design to assess a peer coaching educational intervention for African-American individuals with CKD. The theoretical underpinning was grounded in social learning theory, emphasizing observational learning, imitation, and modeling. 165 patients were randomly assigned to either the intervention group (n = 81) or the control group (n = 84). Pre- and post-intervention analyses showed no significant differences in most health measures between the two groups. However, the intervention group demonstrated significant improvement in the energy/fatigue subscale, witha16-point difference supporting the intervention group (p = .003). Additionally, the intervention group showed increased scores in the pain subscale (p = .015), while the control group did not. The CKD educational intervention highlighted cultural considerations and provided cost-effective strategies for social workers. It emphasizes the importance of targeted educational interventions and calls for further research and interventions to address the comprehensive needs of CKD patients and improve their quality of life.

Exploring the health-related decision-making experiences of people with chronic kidney disease and their caregivers: A qualitative study.

BACKGROUND: This study aimed to explore the decision-making experience of patients with chronic kidney disease (CKD) and their caregivers. METHODS: This was a qualitative descriptive study of the decision-making experiences of individuals with stage 3-end-stage CKD and their family caregivers. One-on-one, semistructured interviews were conducted using a guide developed and approved by a community advisory group. Data were analyzed using thematic analysis. RESULTS: Three themes were identified: (1) decisions triggered by declining health and broad in scope, (2) challenges to decision-making and (3) factors influencing decision-making. Participants' experiences with health-related decision-making demonstrated that decisions were triggered when health declined. Yet, decisions that impact disease progression were being made in stage 3. Decision-making was made difficult due to lack of information, complex co-morbidities, and poor resource utilization. However, the structure and nature of the medical appointment, supportive caregivers, and resources served to remove challenges. CONCLUSION: Decision-support interventions must train patients and caregivers to be empowered participants in answer-seeking behaviours upstream of advanced illness. PUBLIC CONTRIBUTIONS: This work was conducted in full collaboration with a community advisory board consisting of patients with CKD, caregivers and clinicians. These members are noted in the acknowledgement section, and those who worked with the team to develop the interview guide, study protocols, and manuscript preparation are included as authors. As part of their role, advisory members met monthly, providing input on recruitment, study progress, inclusion of diverse voices and added relevance to study findings.

The Impact of COVID-19 on Patient, Family Member, and Stakeholder Research Engagement: Insights from the PREPARE NOW Study.

BACKGROUND: Little is known about the impact of COVID-19 on patient, family member, and stakeholder patient-centered outcomes research engagement. OBJECTIVE: To answer the research questions: (1) What is the impact of COVID-19 on the lives of patients with kidney disease and their families? (2) What is the impact of COVID-19 on research engagement for patient and family member research team members who are themselves at very high risk for poor COVID-19 outcomes? and (3) How can we help patients, family members, and stakeholder team members engage in research during COVID-19? DESIGN: We conducted virtual semi-structured interviews with patient and family member co-investigators and kidney disease stakeholders from the PREPARE NOW study during November 2020. The interview guide included questions about participants' experiences with the impact of COVID-19 on research engagement. PARTICIPANTS: Seven patient and family member co-investigators and eight kidney disease stakeholders involved in a kidney disease patient-centered outcomes research project participated in the interviews, data analysis, and writing this manuscript. APPROACH: We used a content analysis approach and identified the main themes using an inductive process. KEY RESULTS: Respondents reported three main ways that COVID-19 has impacted their lives: emotional impact, changing behaviors, and changes in health care delivery. The majority of respondents reported no negative impact of COVID-19 on their ability to engage in this research project. Suggestions for patient-centered outcomes research during COVID-19 and other emergencies include virtual research activities; active engagement; and promoting trust, honesty, transparency, and authenticity. CONCLUSIONS: COVID-19 has had a significant negative impact on patient, family member, and stakeholder research team members; however, this has not resulted in less research engagement. TRIAL REGISTRATION: Clinicaltrials.gov NCT02722382.

Engaging patients and family members to design and implement patient-centered kidney disease research.

We need more research projects that partner and engage with patients and family members as team members. Doing this requires that patients and family members set research priorities and fully participate in research teams. Models for this patient and family member engagement as research partners can help increase patient centered outcomes research. In this article, we describe how we have successfully engaged patients with kidney disease and family members as Co-Investigators on a 5-year research project testing a health system intervention to improve kidney disease care. Background This article describes a method for successful engagement of patients and family members in all stages of a 5-year comparative effectiveness research trial to improve transitions of care for patients from chronic kidney disease to end-stage kidney disease. Methods This project utilized the Patient-Centered Outcomes Research Institute's conceptual model for engagement with patients and family members. We conducted a qualitative analysis of grant planning meetings to determine patient and family member Co-Investigators' priorities for research and to include these engagement efforts in the research design. Patient and family member Co-Investigators partnered in writing this paper. Results Patients and family members were successfully engaged in remote and in-person meetings to contribute actively to research planning and implementation stages. Three patient-centered themes emerged from our data related to engagement that informed our research plan: kidney disease treatment decision-making, care transitions from chronic to end-stage kidney disease, and patient-centered outcomes. Conclusions The model we have employed represents a new paradigm for kidney disease research in the United States, with patients and family members engaged as full research partners. As a result, the study tests an intervention that directly responds to their needs, and it prioritizes the collection of outcomes data most relevant to patient and family member Co-Investigators. Trial registration NCT02722382 .