RESUMO
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.
RESUMO
Patients face numerous health-related decisions once advanced chronic kidney disease (CKD) is diagnosed. Yet, when patients are underprepared to navigate and discuss health-related decisions, they can make choices inconsistent with their expectations for the future. This pilot study, guided by the multiphase optimization strategy and community-engaged research principles, aimed to explore the acceptability of a developed patient component to a decision-support training intervention called ImPart (Improving Decisional Partnership of CKD Dyads). CKD patients and their family caregivers were recruited from an urban, academic medical center. Eligibility criteria for patients included a diagnosis of stage 3 or higher CKD (on chart review), and caregivers participated in interview sessions only. Patients without a caregiver were not eligible. The intervention was lay coach, telephone-delivered, and designed to be administered in 1-2 week intervals for 4 sessions. An interview guide, developed in collaboration with an advisory group, was designed to ascertain participants' experiences with the intervention. Caregiver interviews focused on changes in the patient's decision ability or engagement. Thirteen patients and eleven caregivers were interviewed. The program was viewed as "good" or "beneficial." Three themes capture the intervention's impact- 1) Frequent and deliberate disease-focused communication, 2) Future planning activation, and 3) Coaching relationship. The piloted intervention was successfully delivered, acceptable to use, and found to promote enhanced disease and future planning communication. By undergoing this work, we ensure that the patient component is feasible to use and meets the needs of participants before implementation in a larger factorial trial.