Health literacy and medication administration performance by caregivers of adults with developmental disabilities

Abstract

Objectives To measure health literacy (HL) of caregivers of adults with intellectual/developmental disabilities (IDDs); to determine the association between HL and a medication administration task (MAT) assessment; and to identify caregiver characteristics associated with higher HL and MAT scores. Design Cross-sectional study. Setting Southeastern Michigan. Participants Caregivers, aged 18 years or older, who provided supportive care of adults with IDDs. Interventions Survey and demonstration. Main Outcome Measures Short Test of Functional Health Literacy in Adults (STOFHLA); a MAT assessment consisting of interpretation of five sets of medication instructions followed by demonstration of understanding using a pill box; and a survey of caregivers' demographics, medication-related experiences, education, characteristics of persons for whom they provide care, and care-related activities performed. Results A total of 47 caregivers provided data. Caregivers had a mean age of 45.7 ± 14.6 years; 41 (87.2%) were women and 38 (80.9%) had education beyond high school. Caregivers were involved in obtaining medication from pharmacies, reminded the person with IDD to take medications and/or administered them to the person, documented medication and health information, and accompanied persons with IDD to physician offices. Most did not conduct monitoring procedures. The STOFHLA mean score was 34.5 ± 2.5 (median, 35; range, 22–36), while the MAT mean score was 12.0 ± 2.2 (median, 12; range, 6–15). Compared with family caregivers, direct support staff more frequently had undergone some medication training and had other people with whom they could discuss medication questions, but they had worked with the person with IDD a significantly shorter amount of time. No significant differences in STOFHLA and MAT scores between the family caregivers and direct support staff were observed. Caregiver education was significantly correlated with the STOFHLA score. MAT scores were not significantly correlated with caregiver characteristics. Conclusion Caregivers are involved in the medication use process for people who have IDD. Ensuring caregiver understanding of medication regimens and/or improving medication-related HL may be an important step to ensure safe and effective use of medications by people with IDD.

Health literacy of caregivers of adult care recipients: A systematic scoping review

“…), cancer patients (Hendrix et al . ) or adults with developmental disabilities (Erickson & LeRoy ). Caregiver sample sizes ranged from 8 to 464 (SD ± 136.1; Chiarchiaro et al .…”

“…, Rahman , Chiarchiaro et al . , Erickson & LeRoy , Hendrix et al . ), two focused on literacy status/reading ability (Eames et al .…”

“…Two studies included both formal and informal caregivers (Garcia et al . , Erickson & LeRoy ) or formal caregivers only (Lindquist et al . ).…”

“…, Gibson , Chiarchiaro et al . , Erickson & LeRoy ), five used the REALM (Eames et al . , Hoffmann et al .…”

Introduction to the special issue: Family Support of Persons with Disabilities Across the Life Course

“…For example, from birth through early childhood family caregiving uniquely includes a focus on play for parent and sibling caregivers (Guralnick, Connor, & Johnson, 2009;Kresak, Gallagher, & Rhodes, 2009). By contrast, family members caring for adults and older adults are tasked with managing medications (Erickson & LeRoy, 2015;Hodgson, Gitlin, Winter, & Hauck, 2014). However, at the individual caregiver level, we need to better understand the amount of time and financial resources family members invest in providing these tasks, data with implications for understanding caregiving across multiple levels of analysis (e.g., family training interventions, state/national policies regarding paying family members, etc.)…”