Background. Over 65 million people in the United States currently provide informal care to an individual with a chronic condition, often with limited or no self-management training or community-based support. As a result, care partners often experience high levels of burden, which may lead to emotional distress, depression, poor health, increased service utilization, greater isolation and reduced quality of life. Care partners of individuals with stroke and TBI experience the transition of care without the necessary skills, training, or resources to manage the new challenges they face. There is a critical need to provide accessible evidence-based training to care partners early in the rehabilitation process, so they can manage issues that arise over time, especially during the transition from the hospital back to the community. Without access to training, care partners will continue to experience high levels of burden.
Goals/objectives. Our long-term goal is to improve the health, well-being, and participation of care partners and individuals with TBI and stroke. The objective of the proposed project is to (1) determine the feasibility and acceptability of delivering remote, group-based PST to care partners of adults with TBI and stroke, and (2) collect pilot data for designing a larger RCT adequately powered to determine if PST produces a clinically meaningful effect for improving care partner outcomes.
Outcomes. Assessments conducted at baseline, completion of intervention, and 1-month post include: participant adherence rate, self-reported acceptability (Acceptability of Intervention Measure), feasibility (adherence rate; Feasibility of Intervention Measure), and appropriateness (Intervention Appropriateness Measure) of the intervention; and whether the intervention has the potential to improve care partner outcomes--perceived burden (Zarit Burden Interview), positive aspects of caregiving (Positive Aspects of Caregiving), depressive symptoms (Patient Health Questionnaire-9), coping skills (Brief Coping Orientation to Problems Experience), and problem-solving skills (Social Problem-Solving Inventory-Revised). Additional baseline assessments will include: 1) Demographics (age, gender, race, ethnicity, education); 2) Care relationship information (nature, duration, living status); and 3) care recipient dependency (Care partner Assessment of Function and Upset). Intervention feasibility data will be collected each zoom session (completed or not, reasons for non-completion, technical issues). Participants will participate in a semi-structured one-on-one interview using the Narrative Evaluation of Intervention Interview at the 1-month follow-up.
Intervention. Care partners will participate in a remote, group-based PST intervention that consists of 1 one-on-one session and 6 group-based PST sessions (1/wk) that follow a structured format. Each session begins with sharing experiences from the past week. Then the PST step sequence will be repeated and explained. Each week one PST step will be highlighted. With emphasis on the highlighted step for that week, the PST framework will be applied to one or more examples from the participants. Participants will complete homework assignments each week—using real life problems to learn the steps of PST on their own, thus acquiring problem solving skills that will be applicable to future problems or barriers. Participants will participate in a one-on-one semi-structured interview to collect client-centered pre-implementation data to hone the intervention for a future RCT.
Knowledge developed. At the completion of this project, we will have established the feasibility and acceptability of a remote, group-based PST intervention for care partners of individuals with TBI and stroke and collected pilot data assessing if remote, group-based PST has the potential to produce a clinically meaningful effect for improving care partner outcomes.
