Supporting Caregivers in the Community and Healthcare Setting
By Valerie Steinmetz, Director of Program Development
Over 48 million caregivers in the US provide caregiving support to loved ones without pay, averaging 24 hours a week. Caregivers are quintessential for many individuals with advanced and chronic conditions to continue living in their homes. While some caregivers experience benefits of caregiving, such as becoming closer to the care recipient and being more present, the caregiving role can also be complex, difficult, and mentally and physically demanding. Additionally, a large body of evidence demonstrates associations between caregiving and poor physical and mental health outcomes.
There are a rising number of federal, state, and local legislation that benefit caregivers. Federal legislation, such as the CARES Act, effective in 42 states, requires hospitals to incorporate caregivers’ contact information into the patients’ medical record and provide training for medical tasks they are to perform in the home. The Family and Medical Leave Act in California offers unpaid, job-protected caregiver leave. In-Home Support Services (IHSS) for Medi-Cal enrollees, provides caregiver support for hours dependent on need and also offers a way for caregivers to become an IHSS provider and receive compensation to assist their loved one. Finally, Veterans Affairs provides caregivers need-based stipends and educational caregiver training. While these benefits are proving effective for caregivers that receive them, not all caregivers are eligible for such benefits, and many do not have the resources they need. Additionally, caregivers need support in the home and healthcare settings, as well as coordination across these settings.
Efforts are growing to support caregivers and connect them to community resources as well as integrating them into the healthcare team. ACCA’s Advanced Illness Care Program is a unique community-based care navigation program that has focused on helping those with advanced illness and their caregivers for over 10 years. ACCA has spoken with Pastors, faith leaders, clinicians, and community leaders to better understand needs of those with advanced illness as well as their caregivers. Many shared that caregivers do not know what questions they need to ask when supporting their loved ones nor what services they could receive.
“Many shared that caregivers do not know what questions they need to ask when supporting their loved ones nor what services they could receive. ”
In my doctoral program work at the UC Davis Betty Irene Moore School of Nursing (BIMSON), I’m participating in a graduate academic unit certificate (GAUC) on family caregiving. The family caregiving GAUC works to prepare healthcare professionals to integrate family caregivers into the healthcare team and ensure they are supported and have the education needed to conduct caregiving activities, such as medical/nursing tasks. Providing training of this nature to the healthcare team and nursing science researchers allows for continued support of the patient in the home setting and ensures caregivers feel prepared, have the education needed, and know who to contact and when, if additional needs arise.
In order to fully gauge caregiving needs, an assessment can help the care team, family, patient and caregiver(s) better understand caregiving assistance needed, associated caregiving education, and additional resources or financial assistance necessary. The Family Caregiving Institute at the BIMSON developed the 9 Family Caregiver Domains of Preparedness that can be used in caregiving education materials that reflects the recipient’s preferences and goals for care. The domains include household tasks, personal care, mobility, health monitoring, emotional and social support, care coordination, medical/nursing tasks, share decision making, and caregiver self-care. ACCA’s Workbook for Caregivers reflects these caregiving domains, providing an assessment of caregiving needs for the person needing care and the caregiver. The workbook also provides practical tools, such as developing a caregiving fellowship of individuals who can help with caregiving activities for the care recipient. Another tool within the Workbook is designed to help the caregiver’s wellbeing, focusing on taking care of themselves so they can take care of others. AICP caregiver participants have shared how useful this workbook is to them as well as their work with their Care Navigators in supporting their own needs and empowering them to advocate for and support their care recipient.
ACCA, in partnership with UCD BIMSON strategic and evaluation leaders, is currently working to prepare a public facing training on the Workbook for Caregivers to caregivers outside of the AICP. With funding from the state CalGrows program, they are also incorporating feedback from the Care Team and AICP participants, editing the Workbook for Caregivers to make it more user friendly with additional storytelling elements.
Support for family caregivers from community and health organizations as well as federal, state, and local legislation are helping individuals navigate caregiving needs and activities. However, expansion to reach a broader group of caregivers and providing additional financial, health and social supports, are needed. Learnings from programs like ACCA and BIMSON can inform future community programs and healthcare teams on how to best help caregivers and patients with caregiving needs.
“Providing training of this nature to the healthcare team and nursing science researchers allows for continued support of the patient in the home setting and ensure caregivers feel prepared, have the education needed, and know who to contact and when, if additional needs arise. ”