Family caregivers are exceptionally valuable partners in the patient-centeredness movement, often sitting at the center of the process of helping their loved ones receive the treatment they need. Yet far too often, their critical contributions don’t get the attention they deserve.
At PCORI, we pride ourselves on focusing on caregivers’ vital role in health and health care. That’s why we take pains to include them as one of the key groups whose questions and concerns help to guide the research we fund.
So it’s appropriate that during November, National Family Caregivers Month, we reflect on the unpaid care that family members and close friends provide day after day to people with medical problems and disabilities. Parents care for children with special needs, children care for aging parents, relatives care for other relatives, and friends care for friends. Such informal care is an important pillar of our long-term healthcare system. A reported 80 percent of US adults receiving long-term care at home rely exclusively on family and friends. There are nearly 66 million family caregivers in the United States, and the care they deliver annually is valued at an estimated $450 billion.
These invaluable caregivers need not only our appreciation but also our support. Their health and careers often suffer from the time and effort devoted to delivering care. Individuals can lift the burden by giving concrete help to caregivers they know: cooking a meal, providing transportation, searching for information, or just showing up to give the caregiver a break.
At PCORI, through our comparative effectiveness research agenda, we are dedicated to learning how to work with caregivers to help them be more effective, reduce their stress, and improve their satisfaction. And we rely on caregivers to share their valuable perspectives for improving health care for everyone.
Bringing the Caregiver’s Voice to Research
Caregivers have been an integral part of PCORI from our very beginning. One of us (GH), an advocate for caregivers, has been on PCORI’s Board of Governors since it was formed in 2010. Several staff members (including SS) have cared for family members for years. Caregivers are represented in all PCORI functions; they are members of our advisory panels as well as our merit review panels. At a recent regional workshop we organized as part of our effort to build a patient-centered research community, about 10 percent of attendees identified themselves as caregivers.
The voices of caregivers are essential to our mission of helping people make better-informed healthcare decisions and improving healthcare delivery and outcomes. Caregivers often both make the decisions about health care and carry them out, especially when the patient is a child, has multiple chronic conditions, has severe disabilities, or is experiencing cognitive impairment. The caregiver serves as the family case manager, and also as clinical staff. He or she may need to learn the treatment options available when an illness is diagnosed and determine how each may affect the patient and family.
The caregiver may also be responsible for navigating a sometimes confusing and fragmented healthcare system, taking the patient to medical appointments, administering medications correctly, enforcing dietary restrictions, supervising exercise programs, and following other aspects of a treatment regimen. As a result, caregivers have unique insight into how medical care is working and what research gaps may exist that should be the subject of PCORI-funded studies.
Research to Improve the Caregiving Experience
Through our research funding, we at PCORI are looking for ways to improve the experience and efficacy of caregivers, which would result in improving the quality of life of the patients they care for. What kinds of support are most effective? Respite care? Time off from paid work? Education and training? Online information? Our first funding cycles include projects that study a range of questions on caregiving. We highlight some of them below.
Caregivers of People with Dementia
In this study, Hispanic family members caring for people with dementia will be assigned to one of two programs. One is designed to reduce negative family interactions and improve family support for the primary caregiver. The other aims to boost caregiver skills through training in action-oriented problem solving, goal setting, and writing of action plans. Before the programs start and after six months, researchers will assess caregivers’ mental and physical health and levels of stress, as well as characteristics of the person they care for. This trial is based at Columbia University Health Sciences.
Caregivers of Breast Cancer Survivors
The goal of this study is to improve the quality of life of Latina survivors of breast cancer and their caregivers. It will examine the effect of a Spanish-language, culturally appropriate program developed with patient input by researchers at Georgetown University in Washington, DC. The program includes group discussions, led by trained facilitators, on a variety of topics. Survivors and caregivers will first have separate discussions, followed by a joint discussion.
The program is intended to improve patient-physician communication, adherence to treatment regimens, and satisfaction with care. The researchers will measure these factors in both the patients and caregivers and, if the intervention is successful, explore what parts are responsible for the improvement. The study team plans to share its results with more than 150 local and national groups that provide care to tens of thousands of Latino families facing cancer.
Mothers of Children with Mental Health Needs
A promising strategy to improve use of child mental health services is to provide mothers with the attitudes and skills required to take advantage of those services. Latino mothers who have a child with mental health needs will participate in a study to test a program intended to promote advocacy skills. The program was developed specifically for Latino families by researchers at the University of North Carolina in Chapel Hill.
They plan to enhance their program based on the results of the trial and parent input, and they will then test the effectiveness of the enhanced program. If this program can help reduce the current disparity in access to care, it may also reduce disparities in health outcomes in children with mental health needs.
Caregivers of Recipients of Stem Cell Transplants
Another study focuses on stem cell transplantation, which sometimes is used to treat leukemia and other serious blood. This is an extraordinarily challenging procedure for both the patient and caregiver, who must be available day and night for the first 100 days or more following the transplant. Not surprisingly, caregivers report stress, depression, and anxiety. A team at the University of Colorado in Denver found in previous work that caregivers who received training in coping and stress management reported reduced stress, anxiety, and depression compared to those who did not receive the training.
The researchers predict that less distressed caregivers will better attend to patient needs, and consequently patients will have improved quality of life. In the PCORI-funded project, the team will test whether the caregiver training, offered in part via smartphone, results in better patient outcomes. Other PCORI-funded research focuses on tools that will help both caregivers and those they care for make better-informed health and healthcare decisions. These studies consider tools for use by patients who have cancer or kidney failure and their caregivers.
We are excited to advance research that will make caregivers more effective, reduce the physical and psychological costs of caregiving, and, in so doing, contribute to improved outcomes that matter to them and to patients.
If you are a caregiver, we encourage you to contribute ideas to our ever-evolving research programs. Please visit PCORI’s Get Involved web page. If you know a caregiver, please take the opportunity of National Family Caregivers Month to express your appreciation, lighten his or her load, and join us in applying comparative effectiveness research to discover the best ways to benefit patients and caregivers.
Hunt is President and CEO of the National Alliance for Caregiving and a member of PCORI’s Board of Governors
Sheridan is PCORI’s Director of Patient Engagement.