Health literacy rates among pediatric tracheostomy caregivers

As health outcomes and disparities become more important in national healthcare, physicians must be aware of every patient's health literacy in order to deliver effective care. Our goal was to measure the health literacy rates in the caregivers of our pediatric tracheostomy population. These caregivers specifically have an immense responsibility that requires a certain capacity for understanding and learning complex skills. Thus far there have been no studies or surveys investigating the rates of health literacy in this population or tracheostomy patients in general. Caregivers' literacy rates were measured by administering a Test of Functional Health Literacy in Adults (TOFHLA). This test uses actual materials that patients might encounter in a typical clinic and consists of a reading comprehension and numeracy section. To assess impact of the complex care on caregiver quality of life, we simultaneously administered the Pediatric Tracheostomy Health Status Instrument (PTHSI), a validated caregiver quality of life measurement.

Caregivers of children with tracheostomies were recruited and surveyed during the Pediatric Tracheostomy Clinic between July 2019-October 2019. Twenty - six caregivers completed the TOFHLA; 24 completed all three parts - the TOFHLA, the demographic survey, and the PTHSI.

Health literacy rates among patient families in the out-patient setting with experience with tracheostomy were deemed "adequate" in 85% of caregivers; the remaining 15% of caregivers scored "inadequate". Overall adult literacy rates in the general population in this state are 26% "inadequate." Approximately 80% of our caregivers rely solely on Medicaid for healthcare insurance and nearly half of participants reported an annual household income less than $5000. Ages of caregivers ranged from 20 to 61 years, with no significant correlation to health literacy. The average PTHSI score was 36 (SD 8.6), denoting a moderate level of caregiver burden but no correlation to the caregiver health literacy score was found. When comparing caregiver health literacy scores in relation to education level, caregivers with college and post-graduate education had higher literacy scores than those with a high school education, p = .0086. In addition, when comparing African American to white caregivers, white caregivers were found to have higher health literacy scores, p = .036. Notably, caregiver burden as measured by the PTHSI score did not differ significantly between caregivers in lower income and higher income levels, p = .91.

Health literacy measurements for caregivers of children with complex medical conditions exceed the health literacy rates of the general population in our state, potentially biased by the intensive training provided to families during their prolonged hospitalization. Healthcare disparities may impact the medically complex child differently from the healthy child. Assumptions about health, wealth and caregiver burden may be inaccurate and warrant further evaluation. Assessing health literacy before institutionalization has occurred may enable us to more accurately design caregiver training programs to further augment literacy and health literacy.