Exploring the Acceptability of a Community-Enhanced Intervention to Improve Decision Support Partnership between Patients with Chronic Kidney Disease and Their Family Caregivers

Project Overview The goal of this 12-month, 3-phase formative evaluation intervention pilot study was to create a patient component to a decision support training intervention in development for family caregivers, called ImPart (Improving Decisional Partnership of CKD Dyads). ImPart consists of two caregiver components: 1) coaching on effective decision support and 2) decision support communication training. As a part of the original intervention, patients were only to receive Ottawa Decision Guide training. After understanding through interviews with patients and caregivers that this was not enough, we undertook this study to develop a more comprehensive patient-focused component to the intervention. The purposes of the study were: In Phase I, to use collaborative research principles to partner with patient and caregiver stakeholder group to use previously collected interview data to adapt the caregiver decision support training for patients. In Phase II, to test the refined patient component in a single-arm pilot study consisting of two consecutive waves of 5 patient/caregiver dyads/waves. While only patients participated in the decisional support training, caregivers were also interviewed to explore their perceptions of the patient’s ability to be a better decisional-support partner. To ensure that diverse experiences were captured, we purposively ensured that 50% of participants identify as Black. In Phase III, to share the preliminary data regarding acceptability and useability and complete final refinement of the patient component. This deposit provides the interview data from the Phase 2 acceptability interviews with CKD patients-caregivers dyads to describe their health-related decision-making experiences, needs, and challenges. These data have led to discussions about how patient training in communication could enhance the decision support partnership between the patient and caregiver. Additionally, this study was guided by an engaged, established patient and caregiver stakeholder group. Consisting of 8 members (4 patients, 4 caregivers/ 4 Black) this group has partnered with the study team since development and are committed to continue serving as their health allows in ongoing research endeavors. By using data and engaging those who have experience in CKD we have created a more robust dyadic version of ImPart that is better designed to empower the CKD dyad, with the decisional partnership and communication skills required to navigate advanced CKD before illness decisions are necessary (stage 3B and 4) so they can: 1. contemplate the decision needed; 2. positively deal with emotions; 3. request the resources/support needed; and 4. make decisions that reflect one’s expectations, values, and preferences.