October is National Health Literacy Month – a time to recognize the importance of making health information easy to understand and the health care system easier to navigate. Although this month primarily targets health care professionals and organizations, family caregivers and older adults can benefit from the resources and tools available.
Research and public input led to the development of the Healthy People 2030 Initiative of the Department of Health. A primary focus is improving “The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” 1
- Personal health literacy is the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.
- Organizational health literacy is the degree 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.
As a family caregiver, you cannot make health care providers improve their skills to “enable individuals to find, understand, and use information and services to inform health-related decisions and actions” but you can improve your skills. By using better skills, you may be able to improve overall communication and even reduce your effort as well as that of the health care provider.
Key Health Literacy Research Findings
- We must not blame the individual for not understanding information that has not been made clear.
- Everyone, no matter how educated, is at risk of misunderstanding health information if the topic is emotionally charged or complex.
- In almost all cases, physicians and other health professionals try to and believe they are communicating accurate information.
- In some cases, patients may believe they have understood directions but may be embarrassed to ask questions to confirm their understanding.
- Healthcare organizations and their systems and procedures have a significant role to play in ensuring understanding in the healthcare setting.
- It is increasingly difficult for people to separate evidence-based information, especially online, from misleading ads and gimmicks.
- The communication of “risk” in an effective and fair way continues to be a challenge for both the provider and the patient.
- There are additional challenges in understanding how to select insurance plans and benefits, especially for those who have not previously been insured.
Research shows low health literacy is more frequent among older adults, minority populations, individuals of low socioeconomic status and low levels of education, those who live with chronic disease or reduced quality of life; and medically underserved people. 2
Given the limitations of so many older adults to get the information that they need, family caregivers need more knowledge about communicating more effectively with health care providers
Nationally, low health literacy exists for a number of reasons. Some people may struggle to understand because they have Limited English Proficiency (LEP); others may have limited education and poorer communication skills. If healthcare providers use medical language that their patients are not familiar with and do not understand, then people who lack language skills or knowledge about the healthcare system are at a greater risk of misunderstanding their diagnosis or instructions.
Building understanding and trust is a process. Practice the following and your ability to communicate will grow stronger. 3
- Active listening—Really listen and paraphrase what you heard. This also helps clarify information for the care receiver and ‘decode’ jargon.
- Ask for clarification—Try to understand the meaning that the speaker intends.
- Ask questions—Check your understanding by saying, “The part that isn’t clear to me is…” “Can you clarify what you mean by…?”
- Demonstrate Understanding—Use phrases such as “So what you are saying is…”
- Avoid Assumptions—Ask questions until you are sure of what is being said. Say “If I understand you right, you mean…”
- State your difficulties and concerns—If you have a worry or concern, state them briefly and clearly.
- Encourage collaboration—Work actively as part of a team. You are an important part of the overall health and independence of your care receiver.
- Focus on common goals—Agree on the actions that need to be taken to achieve those goals.
- Clarify responsibilities—Be clear on who is responsible for what. Make sure that the people involved can do what they are responsible for. If needed, get extra help along the way with a particular task.
- Speak openly and honestly—Explain how you and the person in your care are responding emotionally to the treatment plan.
- Help with problem solving—As the caregiver, you have important information about what may be contributing to problems or causing difficulties. Share this information with the health care team.
- Express appreciation—Remember to say “thank you.
From the Medicare Interactive website,Communicating with Health Care Providers, 4 learn more about:
- Being prepared for doctor visits.
- Sharing information.
- Asking questions.
- Getting information in writing.
- Following up.
Information Technology related to health communication and information
Written instructions and shared digital medical records may help communication in the future. Members of a Health Communication and Health Information Technology (HC-HIT) Workgroup developed objectives related to health communication and information technology (IT). They are to provide data to track progress toward achieving these objectives throughout the decade. 5
- Health Literacy Communication, National Institute of Health
- Language and Literature, US Department of Health and Human Services
- Tips for communicating with health care providers, Medicare Interactive
- Communicating with Health Care Providers, FamilyCaregiversOnline
- Health Communication and Health Information Technology Workgroup, Healthy People 2030, Us Department of Health and Human Services
We hope this information is helpful to you in the important work you do as a family caregiver.
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