Project Summary/Abstract: Our long-term goal is to optimize stroke recovery by developing family-centered
rehabilitation interventions that support continued and progressive functional improvements in the stroke
survivor - without increasing caregiver burden. Stroke is a leading cause of long-term disability, with the
majority of stroke survivors reporting prolonged difficulty using their affected upper extremity. Contrary to
expectations, upper extremity functional capacity improvement is not always reflected in stroke survivor activity
performance in daily life. Family carepartners play a key role in stroke survivor recovery and perseverance in
practicing upper extremity activities. However, carepartners often feel unprepared, experience high strain, and
reduced quality of life. To address this gap, we developed our theory-based family-centered intervention,
Carepartner and Collaborative Integrated Therapy (CARE-CITE), that uses well-established autonomy-
supportive strategies (characterized by empathy, choice, problem-solving, and reduced use of controlling
language) to engage carepartners during stroke survivor in-home rehabilitation activities. To positively motivate
stroke survivors to persist in upper extremity task practice, the carepartners learn how to create an autonomy-
supportive environment through instructional web-based modules that feature exemplary videos of family
scenarios practicing in-home rehabilitation activities. In virtual therapist-guided home training sessions, the
dyad and therapist-co-creates a tailored and progressive exercise program that integrates meaningful upper
extremity practice into daily activities of living. Across three preliminary studies, we have demonstrated good
recruitment, adherence, and safety, with strong content validity, high carepartner satisfaction, and low study
burden. Promising data for improvements in chronic and sub-acute stroke survivors showed clinically
meaningful improvements in upper extremity functional capacity and activity performance assessments, as well
as social participation. Carepartners showed reduced strain and family conflict with improved quality of life.
The goals of this R01 are to use a fully virtual, two-group randomized clinical trial (n=110 dyads) to test the
efficacy of CARE-CITE at two months and sustainability of improvements at 6 months compared to an
attention control group. The specific aims are to determine the effects of CARE-CITE on stroke survivor upper
extremity functional capacity (Aim 1), upper extremity daily activity performance (accelerometry and patient-
reported measures), and social participation (Aim 2). Additionally, we will evaluate the effects on carepartner
strain, conflict around stroke recovery, and quality of life (Aim3). Aligned with the NIH Research Plan on
Rehabilitation, the impact of this work is the development of innovative family-level interventions to improve
both stroke survivor and carepartner outcomes. Upon the successful study completion, our next goal will be to
translate this clinically feasible CARE-CITE intervention into current stroke systems of care; and to expand its
application for use in other disability-related conditions broadening public health impact.
