November is National Family Caregivers Month, which recognizes the love and sacrifice of more than 50 million Americans providing crucial care and medical assistance to parents, children, siblings, and other loved ones with or without disabilities, ensuring their health and dignity. According to the Family Caregiver Alliance (FCA), about 82% of caregivers care for one other adult, while 15% care for two adults, and 3% for three or more adults. On average, 46% of family caregivers who provide complex chronic care perform medical and nursing tasks and more than 96% provide help with activities of daily living (ADLs), such as personal hygiene, dressing and undressing, and getting in and out of bed, or instrumental ADLs such as taking prescribed medications, shopping for groceries, transportation, or using technology, among others.
Caregiving is an important public health issue that affects the quality of life for millions of people. Informal and family caregivers are the backbone of long-term care provided in people’s homes. However, caregiving can affect the caregiver’s life in myriad ways including their ability to work, engage in social interactions and relationships, and maintain good physical and mental health. It can also bring great satisfaction and strengthen relationships, both of which enhance quality of life. The Centers for Disease Control and Prevention (CDC) released a brief, Caregiving for Family and Friends – A Public Health Issue, which discusses the importance of understanding the physical and mental health burden on family caregivers, the range of tasks they may perform, and how public health professionals can advocate for changes to systems that promote the health and wellbeing of both family caregivers and their care recipients.
NARIC’s information specialists are often asked for information and resources related to caregiving. This month, we are highlighting evidence-based consumer products from the NIDILRR community for family caregivers, their families, and service providers. These products may include guides, calendars, factsheets, and more.
Below, you will find just a few examples of evidence-based consumer products produced by the NIDILRR community:
- The Research and Education to Support the Science of Independent Living for Inclusion and Engagement: National Center of Excellence RRTC (RESILIENCE RRTC) works to advance translational research and implementation science and increase the availability of evidence-based interventions that improve caregiver support services for those assisting family members with a disability. The Center hosts the Built to Scale Seminar Series, which explores the challenges and successes in scaling evidence-based health innovations for caregivers and their families. The center publishes two newsletters: The CAPABLE Newsletter, which keeps the caregiving community connected, and the Chicago Parent Program newsletter, which helps parents and other family caregivers stay informed on topics that are important to them.
- The Model Systems Knowledge Translation Center (MSKTC) enhances the use of research-based information to inform decision making by spinal cord injury (SCI), traumatic brain injury (TBI), and burn injury stakeholders, including family caregivers, and improves the lives and services for people with SCI, TBI, and burn injuries and their families.
- MSKTC published a guide, Family Caregiver Guide to Selecting Rehabilitation Programs for Persons with Disorders of Consciousness (DoC), that provides information on DoC, who should be included as part of the Rehab Program Staff, information on Rehab Program Goals, and information, training, and services for family caregivers, among other topics. This guide is also available in Spanish (PDF).
- The factsheet, Help Your Child Recover – Build Resilience After Burn injury, helps parents learn what to expect right after a burn injury, common behavior changes, building resilience in their children, and reactions to a child’s burn injury, among other topics. This factsheet is also available in Spanish (PDF).
- NARIC has published blog posts, podcast episodes, and Ask a Librarian articles on caregiving:
- Are there NIDILRR-funded resources for people who are new to disability? shares information and resources funded by NIDILRR for those new to disability, including family caregivers. This Ask A Librarian article is also available in Spanish.
- The following Research In Focus articles share reader-friendly summaries of the latest research from the NIDILRR community related to caregiving, including:
- NARIC’s Spotlight Blog shares resources, information, and more on family caregiving and related topics in English and Spanish. And NARIC’s Spotlight podcast’s latest episodes discuss caregiving in English and Spanish.
To learn more about these and other products from the NIDILRR community, contact NARIC’s information specialists.
