This month is National Health Literacy Month—but what does this term mean in the context of significant childhood illness? Plain and simple, health literacy is the degree to which individuals have the capacity to obtain, process, and understand health information and services needed to make appropriate health decisions.
Although health literacy is most often used when referring to a patient’s understanding of basic health information, the term certainly can apply to a parent’s understanding of the complex medical information required for appropriate management of their child’s chronic or serious medical condition or disability.
According to health.gov, people with limited health literacy lack access to knowledge or have misinformation about the nature and causes of disease or the relationship between treatment options and various health outcomes. They may not have the skills necessary to navigate the healthcare system. Being able to manage all the information required to properly implement their child’s care plan can also be a part of health literacy. A parent’s culture or personality may affect his or her willingness to ask questions of their medical team or voice opinions about treatments. Having the ability to advocate for insurance coverage for the treatments necessary for their child can also affect health literacy.
But above all, one major aspect that contributes to a parent’s health literacy is how health care providers communicate with parents. Certainly how health information is delivered, especially during highly stressful situations such as a new diagnosis, affects the likelihood that parents will both understand and retain this information.
Here is a summary from health.gov of recommended communication tips that professionals can use with parents:
- Use plain language—leave the language of the “culture of medicine” out of the conversation with patients and families.
- Communicate important medical information and treatment options in the client’s primary language through a translator if necessary.
- Build families’ skills by defining technical terms and helping them understand what is being communicated.
- Break down complex information into sizable chunks and relate the information to the client’s experience whenever possible.
Sheri Sobrato Brisson is a brain tumor survivor who discovered the importance of self-reflection during her recovery. From her personal illness experience and a dozen years supporting families and children with serious illness, her life’s philanthropic mission is to empower families and children facing serious illness. She has started and facilitated support groups for children with illness and their families for over twenty years with organizations such as the American Cancer Society, National Brain Tumor Foundation, Ronald McDonald House, and Packard Children’s Hospital. She has served as Board Member for many children’s health nonprofit organizations including American Cancer Society San Jose, UCSF/Mt. Zion Auxiliary, Creighton Health Institute, and Okizu Foundation. Brisson received her master’s degree in counseling from Santa Clara University and her undergraduate degree in human biology from Stanford University.
Read more about Sheri at https://diggingdeep.org