As Americans live longer and face higher rates of chronic conditions, family members are increasingly stepping up to provide their day-to-day care. PCORI recognizes the critical and growing role these nearly 66 million family caregivers play in our complex healthcare system. So we mark National Family Caregivers Month by highlighting a few of the PCORI-funded projects that focus on not only how to improve the invaluable support caregivers offer but also how for care of these frontline health providers themselves.
Last year, we commemorated National Family Caregivers Month by describing how PCORI support is bringing the caregiver’s voice to both our process of funding research and the way those studies are conducted. We highlighted projects that focus on improving the quality of life of patients through addressing the needs of their caregivers. These studies engage caregivers throughout the research process to ensure that their valuable perspectives inform the development of improved approaches to treating some of the most challenging diseases.
This year, we thought we’d share examples of a different approach to improving the lives of caregivers and the patients they support. Through our Pipeline to Proposal awards, we invest in projects that build capacity for patients, caregivers, researchers, and other healthcare stakeholders to build partnerships from the ground up around a common healthcare interest. Below we describe five Pipeline to Proposal awards that highlight caregivers. We expect Pipeline to Proposal partnerships to lead to high-quality research ideas and collaborations. To date, we’ve funded 30 Tier I Pipeline to Proposal awards, which support the initial development of partnerships. We plan to announce additional opportunities for funding across all tiers of the program later this month.
Caregivers for the Elderly
The CISE Project for Family Caregivers is based at the Chinese Information and Service Center (CISE), a community nonprofit organization in Washington state. The center recognized the burden placed on people in the Chinese-American community who are providing long-term caregiving to family members. CISE, which provides social services, recognized the emotional and physical toll on caregivers, most of whom are helping elderly relatives. Our Pipeline to Proposal award supports the development of a partnership between CISE, a researcher, and a caregiver to create a community-based needs assessment to improve caregiver training and support. Following the principles of community-based participatory research, the project will interview family caregivers to understand their needs and solicit their ideas about an ideal training program.
Taking Care of Our Parents: Improving the Coordination of Care for Elderly Community Members, a community partnership initiative led by the Leaving Well Coalition in Utah, addresses the fragmentation of the long-term care continuum. By learning from community members who have provided care, this project aims to improve the way caregivers navigate an often-confusing healthcare system. The project has created an advisory committee of advocates for elders and experts from agencies with responsibilities for aspects of elder care. It used a short survey to ask elderly patients and caregivers about ways in which they can be better supported. That survey helped identify individuals to participate in personal interviews and group discussions aimed at identifying common issues in elder care. These activities are a first step in defining a research question that addresses needs of the community of elderly patients and caregivers.
Improving the Lives of Alzheimer's Patients and Their Caregivers: A Patient-Centered Statewide Approach is a project from the Billings Clinic Center for Clinical Translational Research in Montana. This project aims to engage patients, stakeholders, and researchers to develop a research agenda that will improve the lives of patients with Alzheimer's disease and related dementias. The project will take a comprehensive approach to promoting awareness of the disease, encouraging early detection, improving disease management and care coordination, and addressing caregiver burden. This team is identifying gaps in care and developing the infrastructure to engage in research to address the needs of their community.
Caregivers across the Spectrum
Although most family caregivers support older family members, there are also many parents and other relatives providing care for children and young adults with special needs. We are committed to investing in projects that address the needs of this community.
Increasing Patient Engagement and Capacity Building between Community Stakeholders and Patients to Improve Diabetes Education and Management among School-Aged Children is developing a partnership of diabetes patients and their families, school nurses, school personnel, diabetes nurses, and diabetes care advocates to address concerns that children are receiving suboptimal diabetes care while at school. Through focus groups, community meetings, and a leadership council, this project seeks to create a community group that will develop a research agenda to determine effective ways to support schools in providing better diabetes care and improve their communication with caregivers. This project is based at Seattle Children's Hospital in Washington state.
Establishing a Patient-Centered Research Community for Cystic Fibrosis is a project of CysticLife, an Arizona-based online community for patients with cystic fibrosis and their caregivers. Cystic fibrosis patients tend to be children and young adults because the average life expectancy is 40 years. CysticLife provides a forum for its members to regularly share about what is working for them, what isn't, and what side effects they are experiencing. With PCORI funding, a partnership of patients, caregivers, clinicians, and researchers will develop research questions important for the cystic fibrosis community to make informed treatment decisions.
We are excited about investing in these projects that strengthen relationships between patients, caregivers, researchers, and other stakeholders, particularly in communities that have been underrepresented in research.
If you are a caregiver, we thank you for your contributions to the nation’s healthcare system and encourage you to contribute ideas to our ever-evolving research programs; find out more in the Get Involved section of our website. If you know a caregiver, we hope you’ll express your appreciation and see how you can help. We welcome you to join us in supporting comparative effectiveness research to learn the best ways to support caregivers and their patients.
Konopka and Clyatt are senior program associates in PCORI’s Engagement program
Sheridan is PCORI’s Director of Patient Engagement