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A related scientific statement, "Family Caregiving for Individuals with Heart Failure" presents an overview of the challenges faced by unpaid family members who serve as caregivers for patients with heart failure.
Because heart failure is a progressive disease with alternating periods of stability, caregiver demands change over time. Following an initial diagnosis of heart failure, caregivers may need to provide emotional support to help patients cope with their heart failure diagnosis, potential social isolation and loss of independence.
As the disease progresses, patients often need help with the activities of daily living, such as bathing, toileting, dressing, medication adherence and navigating the health care system. In advanced heart failure, caregivers are often engaged to assist with management of intensive care therapies such as mechanical circulatory support that would previously have been undertaken by health care professionals in clinical settings.
"There is a critical need for health care providers to clearly understand the demands of caregiving and how these change throughout the trajectory of heart failure. Development of tools to screen and identify caregivers who are at high risk for depression and distress are also needed," said Lisa Kitko, Ph.D., R.N., chair of the family caregiving writing committee, and associate professor and associate dean of graduate education at the Pennsylvania State University College of Nursing in University Park, Pennsylvania.
"It is also important to assess caregiver capabilities, including their motivation to provide care; their physical, sensory, motor and cognitive ability to perform required tasks; their level of distress and depression. This includes making referrals to obtain supportive services, such as counseling and respite care on behalf of the caregiver," said Kitko.
Health care providers should include caregivers when working with the patient to make difficult decisions, such as whether to surgically implant medical devices designed to help the heart pump more effectively or deciding when it is time to deactivate these devices and progress to palliative or hospice care. "Palliative and/or hospice care providers may also have resources to support caregivers," said Kitko.
It is estimated that caregivers spend an average of 22 hours per week caring for patients with heart failure, and thus, they play an integral and instrumental role in providing care. Unpaid caregivers often experience loss of income, benefits and career opportunities, which can be financially burdensome to the entire family.
These costs may be disproportionately borne by older adults, women and persons in underserved race/ethnic groups already at higher risk for financial insecurity.
In addition to the financial costs, significantly higher physical and psychological health risks, such as social isolation and disruption of outside relationships, have been observed among people caring for family members with chronic illnesses such as heart failure.
"In our current health care system, there is a lack of incentives for clinicians to evaluate caregiver needs and offer direct support.
The largest barrier is the lack of payment and reimbursement mechanisms that would allow clinicians to provide direct support to caregivers," said Kitko.
"Other barriers include a lack of systematic mechanisms to identify caregivers and make referrals for those with the highest distress and unmet needs; medical record systems that can accommodate caregiver assessment, intervention and tracking; limited funding for community-based agencies that provide caregiver services; minimal time for clinical interactions with patients, which limits the ability address caregiver concerns or distress; and lack of clear guidelines for caregiver support provision." Source:
American Heart Association Journal reference:
Havranek; EP., et al . (2020) Addressing the Social Determinants of Cardiovascular Health for All: Defining the Problem and Creating Solutions. Circulation . doi.org/10.1161/CIR. 228 .
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