Informal caregiving is demanding and stressful. This stress may exceed the caregiver's ability to adapt, and many eventually become care recipients themselves as years of stress and deferred self-care put them at increased risk for illness. Self-care refers to the behaviors undertaken to maintain health and manage illness. Engaging in self-care may improve health status, defined as physical functioning and mental well-being. Caregivers of adults with heart failure (HF) are an understudied group. HF is extremely common. Most HF patients remain in the community through the end of their lives, depending on informal caregivers to assist them. The trajectory of illness in HF is highly variable, which limits the use of palliative care and respite services. As a consequence, HF caregivers report significant stress and poor self-care. Health coaching, a support intervention, can improve self-care in patients, but studies evaluating HF caregivers are limited, as are studies of the cost-effectiveness of support interventions for caregivers. Even less is known about the effect of caregiver support interventions on HF patient outcomes. Caregiving duties often confine caregivers to the home and many are unable to attend in-person sessions, so we have developed and pilot tested a virtual support intervention (ViCCY [?Vicky?] ? Virtual Caregiver Coach for You), that we propose to evaluate among HF caregivers. Using a randomized controlled trial (RCT) design, we will enroll informal HF caregivers with poor self-care (Health Self-Care Neglect scale score ?2), randomizing them 1:1 to an intervention or control group. Both groups will receive standard care augmented with Health Information (HI) delivered through the Internet, but the ViCCY caregiver group will also receive 10 front-loaded coaching support sessions tailored to individual issues. The control group will have access to the same HI resources over the same interval, using the same Internet program, but without coaching support. At baseline and 3, 6, 9, and 12 months, we will collect self-reported data on self-care, stress, coping, and health status. At 6 months, we will compare ViCCY to HI alone to assess intervention efficacy using intent-to-treat analysis. Our pilot data suggest that addition of support provided by the health coach will make ViCCY more efficacious than HI alone. A sample of 250 caregivers (125/arm) will provide >90% power to detect significant differences between the groups on the primary outcome of self-care (Aim 1). We will collect quality adjusted life years (QALYs) and health care resource use in caregivers over 12 months to assess cost-effectiveness of ViCCY (Aim 2). To explore the effect of caregiver outcomes on HF patients' outcomes (hospitalization rates, hospital days, mortality rates, QALYs) over a 12-month period (Aim 3) and knowing that not all HF patients will participate, we will consent a subgroup of the HF patients cared for by these caregivers (at least 40 dyads). If shown to be efficacious and cost-effective, our virtual health coaching intervention can easily scaled to support millions of caregivers worldwide. This application addresses the NINR strategic plan and is directly responsive to PA-18-150.

Public Health Relevance

Heart failure is extremely common in the aging population worldwide and the vast majority of these functionally limited patients are living at home with care provided to them by their loved ones. This study has the potential to address this underserved and distressed segment of the population (caregivers of heart failure patients) by improving their abilities to cope with the stress of providing daily care to a loved one and refocus their attentions onto themselves (self-care). If perceived stress decreases in caregivers and they are able to care for themselves more effectively, this study will provide a new and innovative way to increase the support available for these caregivers.

National Institute of Health (NIH)
National Institute of Nursing Research (NINR)
Research Project (R01)
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Special Emphasis Panel (ZRG1)
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Huss, Karen
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University of Pennsylvania
Other Health Professions
Schools of Nursing
United States
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