As the population of the United States ages, an increasing number of older patients develop chronic illnesses, including cognitive, sensory, and functional limitations or a combination of these. These patients need increasing support from the health care system and their family caregivers. Family members are often involved as informal caregivers for those with life-limiting conditions and take on many physical, emotional, and financial responsibilities, including helping with basic activities of daily living, such as bathing and dressing, coordinating health care appointments and transportation, managing medications, and performing housework. As a result, many of these family caregivers must confront challenges to their own physical, emotional, and financial wellbeing. These hidden costs of caregiving reduce not only their quality of life but also the quality of care they provide.
A fundamental precept of palliative care is providing for patients and their families as a unit. But in clinical practice, palliative care teams rarely have time to comprehensively assess family caregiver needs. Even when they can do so, the effectiveness has been limited because there has been no implementation of a standardized system of assessment to understand caregivers’ particular needs.
There has long been a need to improve support for family caregivers of patients with serious illnesses. A caregiver support project funded by Archstone Foundation aimed to do so by building the capacity of palliative care teams to systematically assess family caregiver needs and intervene in meaningful ways.
The UCSF Caregiver Support Project
The University of California at San Francisco’s Division of Palliative Care Medicine employs clinicians, educators, and researchers dedicated to improving the quality of care for patients with serious illnesses and those approaching end of life. In 2009, the Palliative Care Quality Network was established at UCSF. With support from several organizations, including the Foundation, the PCQN has grown into a network of more than 120 palliative care teams and has joined several other palliative care registries to form the Palliative Care Quality Collaborative (PCQC). Together, they have developed the processes needed to implement robust educational and quality improvement initiatives, including the caregiver support project.
Led by Dr. Steven Pantilat, Professor of Medicine, and Dr. Carly Zapata, director of the PCQN and an assistant professor, the goal of the UCSF project is to improve support for the family caregivers of patients served by palliative care teams by conducting needs assessments and developing interventions and resources tailored to their needs.
The Making of a Toolkit
A report on family caregiving released in 2016 by the National Academies of Science, Engineering, and Medicine, partially funded by Archstone Foundation, stressed the importance of providing “high-quality, setting-appropriate, and caregiver-defined respite services.” And so, the UCSF caregiver support project ensured a diverse group of family caregivers was involved in the process of identifying needed respite services and contributing to their development. This process was a cooperative effort among family caregivers, experts in caregiver support, and seven outpatient PCQN member teams located throughout the state of California and offering both clinic and home-based palliative care services.
By adapting and refining existing caregiver screening instruments, the team developed a systematic caregiver needs assessment survey – one designed to meet the clinical practice constraints of participating palliative care teams. The team also collaborated with health literacy consultants to create a caregiver toolkit tailored to a diverse caregiver population. It included 2-page quick guides on relevant topics and a more detailed Caregiver Handbook. The topics covered were:
- Managing care at home
- Caregiving in the hospital and clinic
- Talking with children about serious illness
- Paying for healthcare and other basic needs
- Planning ahead
- End-of-life care
- Self-care
Over the course of the study, these materials were piloted, implemented, evaluated, and refined. The final version of the caregiver handbook was translated into Spanish and Chinese and made accessible on the PCQN website. Participating family caregivers overwhelmingly appreciated the chance to share their experience and rarely had been attended to in any way by the healthcare system prior to being surveyed for this project and team, underscoring the need for routine caregiver assessment and support.
Increased support for family members helping with palliative care not only addresses caregivers’ specific needs but also improves the quality of care they provide. Archstone Foundation will continue its support for family caregivers through our Three Ts strategy – Teams, Training, and Technology – in support of our mission to improve the lives of older Californians and their caregivers.
Special thanks to Dr. Steven Pantilat, and Dr. Carly Zapata, UCSF, for their contributions to this post.
