Project Summary/Abstract:
Stroke is a leading cause of serious, long-term disability, and has a very sudden onset. Families are often
thrust into providing care without sufficient training from health care providers, having to learn on their own to
provide care. Studies show that caregiving without proper training can be detrimental to caregiver’s physical
and mental health, which can impede survivor rehabilitation and lead to institutionalization and higher societal
costs. Unlike existing stroke caregiver interventions, which require costly face-to-face interactions, and that
focus primarily on the survivor’s care, the nurse-led Telephone Assessment and Skill-Building Kit (TASK II) is
delivered completely by telephone, and empowers caregivers to address both their own and the survivor’s
needs using innovative skill-building strategies. Aligned with current patient and caregiver guidelines, TASK II
demonstrated evidence of content validity, treatment fidelity, caregiver satisfaction, and efficacy for reducing
caregiver depressive symptoms; however, TASK II revealed a need for a stronger focus on self-management
(SM) strategies to improve caregiver symptoms and health, along with enhanced use of other telehealth modes
of delivery. In an NINR-funded R21, the Telehealth Assessment and Skill-building Kit (TASK III) was optimized
through the innovative leveraging of technologies and SM strategies to improve stroke family caregiver
symptoms and health. A new goal setting tip sheet promotes caregivers’ self-management of their own
symptoms and health through the use of novel skill-building strategies. Caregivers now choose how they want
to access the TASK III Resource Guide (mailed hard copy, eBook, USB drive, or interactive website
(https://www.task3web.com/) and how they would like to interact with the nurse (telephone, FaceTime, or
online videoconferencing). Preliminary TASK III data provided evidence for feasibility of recruitment, retention,
treatment fidelity, high satisfaction, and positive data trends in 74 stroke family caregivers randomized to TASK
III (n=36) or to an Information, Support, and Referral (ISR) group (n=38). The purpose of the proposed study is
to test short-term (immediately post-intervention at 8 weeks) and long-term (12, 24, and 52 weeks) efficacy of
the TASK III intervention, compared with the ISR group, in 296 stroke caregivers. The primary outcome is
caregiver life changes (i.e., physical health, physical functioning, emotional well-being, general health) as a
result of providing care. Secondary outcomes include depressive symptoms (in caregivers with mild to severe
depressive symptoms), other symptoms (stress, fatigue, sleep, pain, shortness of breath), unhealthy days, SM
of diet/exercise, and self-reported healthcare utilization. Theoretically-based mediators include task difficulty,
threat appraisal, and self-efficacy. Program evaluation outcomes (satisfaction, technology ratings) will also be
analyzed. If TASK III is shown to be efficacious in the proposed randomized controlled clinical trial, our next
goal will be to translate TASK III into ongoing stroke systems of care; and to adapt it for use among caregivers
with other debilitating/chronic conditions providing a tremendous public health impact.