Abstract: FR-PO820
Exploring Health-Related Decision-Making in Advancing CKD
Session Information
- Health Maintenance, Nutrition, Metabolism - II
November 03, 2023 | Location: Exhibit Hall, Pennsylvania Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Health Maintenance, Nutrition, and Metabolism
- 1500 Health Maintenance, Nutrition, and Metabolism
Authors
- Gazaway, Shena, University of Alabama at Birmingham, School of Nursing, Birmingham, Alabama, United States
- Nix Parker, Tamara M., University of Alabama at Birmingham, School of Nursing, Birmingham, Alabama, United States
- Gutierrez, Orlando M., The University of Alabama at Birmingham, Birmingham, Alabama, United States
- Lyas, Clare Nichols, The University of Alabama at Birmingham, Birmingham, Alabama, United States
- Dionne-Odom, James N., University of Alabama at Birmingham, School of Nursing, Birmingham, Alabama, United States
Background
Patients with chronic kidney disease (CKD) often rely on family caregivers to help cope with illness and make health-related decisions. While many patients desire detailed information about their disease and prognosis, clinicians often report not sharing prognostic information to maintain hope. These decision-making trends leave patients and caregivers under-informed, potentially resulting in missed opportunities for them to take greater ownership of their disease management. Given the scarcity of literature describing health-related decision-making before initiating renal replacement therapy, we undertook a study to describe the needs, challenges, and experiences of patients with CKD and their family caregivers when making health-related decisions.
Methods
A qualitative descriptive study was conducted with individuals with Stage 3 or higher CKD, including end-stage and their family caregivers. Recruitment occurred from April 2022 to December 2022 at two outpatient nephrology clinics within an urban academic medical center. Data was collected via one-on-one, semi-structured interviews. A community advisory group of CKD patients and clinicians developed the guide. Data were analyzed using thematic analysis.
Results
Patient and caregiver participants (N=30) were older (over 60; n=20), and the majority were female (n=21). Black (n=14) and White (n=16) individuals were represented almost evenly. Three themes describing the decision-making experience 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 demonstrated that decisions were triggered when health declined. Yet, decisions that impact disease progression were being made as early as stage 3. Decision-making was made difficult due to poor resource utilization and lack of information. Yet, the structure and nature of the medical appointment and resources served to remove challenges by assisting with enhanced communication and greater self-advocacy.
Conclusion
This study's findings demonstrate the need for decision-support interventions upstream of advanced illness that train patients and caregivers to be empowered participants in answer-seeking behaviors that enhance their ability to make informed patient-centered decisions.
Funding
- Private Foundation Support