Caregiving in the United States has reached a crisis due to an aging population, a lack of investment in a professional caregiving infrastructure, and the COVID-19 pandemic. These factors pushed millions of Americans out of the workforce and into a caregiving role, particularly women. Those Americans already providing care for a loved one experienced a 36 percent increase in caregiving responsibilities during the pandemic.
Informal, unpaid caregiving is the backbone of long-term health care in the United States, with most caregivers providing care for family members and friends, whether due to sickness, injury or disability. Most of us will be a caregiver at some point in our lives, according to the Family Caregiver Alliance, which names caregiving a “universal occupation.”
The needs of caregivers are immediate and diverse. On June 24th, caregiver support — labeled as ‘human infrastructure’ — was bumped from the $1.2 trillion infrastructure deal. Now nestled in President Biden’s $3.5 trillion budget package, provisions such as extended paid family leave and improved access to professional caregiving services have an uncertain road ahead.
Caregivers should not have to wait for the political outcome. They need support now and in the future through health literacy.
Health literacy has been overlooked as an essential piece to caregiver support and empowerment. Health organizations, including health care systems, government agencies, and insurers, must direct their attention to health literacy as caregivers engage in vital tasks, including administration of medications, operating medical equipment, navigating a complex health care system, and dealing with legal and financial forms.
Although no one is completely health literate, only 12 percent of the population is considered proficient in health literacy. There is a major gap between what the health system expects caregivers to do and the support caregivers receive to do it.
Caregivers shouldn’t have to figure out where to look for resources and unscramble complex health information to put it in use, especially if they are time-strapped and overwhelmed. By virtue of their role as “caregivers,” they are rarely viewed as people who need care themselves. And, it’s important that health organizations don’t assume caregivers have all they require to fulfill their roles.
Addressing new challenges, Healthy People 2030 — our national health goals and objectives for the decade – has elevated health literacy in its framework by addressing both individual and organizational health literacy to advance health and well-being. Organizational health literacy refers to the extent to which organizations “equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.”
With this in mind, health organizations need to use plain language for both written and verbal information, avoiding jargon typically used in medical, legal, and financial spheres. Plain language is the law, and the CDC recommends that we use everyday words with real-life examples that will help an audience understand.
Numeracy is a key part of health literacy for patient safety when communicating with patients and caregivers. Errors and misinterpretations can be life-threatening. For instance, numbers are used to instruct and inform us, whether it’s calculating medication dosages, interpreting blood sugar readings or understanding the probability of recovery after cancer surgery.
The Agency for Healthcare Research and Quality shares tips health professionals can use to communicate numbers “clearly” and “meaningfully,” such as doing calculations for patients and caregivers, using numbers only when necessary, and choosing to use frequencies (e.g., 1 in 10) instead of abstract percentages.
Being mindful of any visual impairment on the part of caregivers and patients, easy-to-use visuals and graphs are valuable aids. Visual information can communicate risks and benefits, simplify text-heavy documents and instructions, map health service networks, and summarize the information overload that can accompany health care visits, treatment protocols, and payment plans.
Caregivers of family members report more stress and at a higher level than the general population. Financial concerns contribute to stress as caregivers report that they currently spend a quarter of their annual income on caregiving expenses, which contributed to the financial and mental strain during the COVID-19 pandemic. Mental health of caregivers is also a key issue with approximately 20 percent of family caregivers experiencing depression.
Interactions with health organizations should include information and resources that help caregivers cope with and reduce the stress of caregiving. Self-care routines, understanding the signs of depression, finding supportive caregiver social networks, and links to financial assistance are all central to caregivers’ well-being.
So, where do we go from here?
America shouldn’t have to wait for caregiving funding. We have a need for health literacy in action now to provide long-term support for caregivers and empower them in their roles. Health organizations and professionals must work with caregivers and care recipients to make it happen because caregiving affects us all.
Deanna Lernihan is a public health professional and medical writer. Sandra Vamos is an associate professor of public health.
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