Perioperative Ostomy Care and Education Experiences by Patient and Caregiver Health Literacy

INTRODUCTION: Patients with a new ostomy and their caregivers face challenges learning ostomy care. Health literacy impacts how patients access and understand health-related resources. This study sought to explore differences in perioperative ostomy care and education experiences for patients and caregivers by health literacy level. METHODS: Patients with a new ostomy and their caregivers of varying health literacy levels were purposively recruited to complete semistructured interviews to explore perioperative experiences regarding ostomy care. Health literacy level was defined using the Brief Health Literacy Screener. Interviews were transcribed and analyzed using a comparative thematic analysis approach. RESULTS: Among patients (n = 20) and caregivers (n = 15) interviewed, 45% of patients and 33% of caregivers had limited health literacy. Three major themes were identified representing unique barriers experienced by limited health literacy participants compared to adequate health literacy participants: "accessing ostomy-related resources" (i.e., difficulty obtaining and understanding education materials), "ostomy appliance instruction" (i.e., desire for more effective education and troubleshooting), and "attitudes/coping" (i.e., negative emotions surrounding their ostomy). Both health literacy groups reported "not knowing what to expect," "caring for inflamed skin," and "variability in utility of home health" as common barriers to ostomy care. CONCLUSIONS: Perioperative ostomy care and education experiences vary by patient and caregiver health literacy levels. Limited health literacy was associated with barriers regarding accessing resources, ostomy education, and attitudes/coping. These barriers should be addressed in future interventions to provide health literacy-sensitive ostomy care and education.