Exploration of the relationships between health literacy and experience of care integration in parents of children with special healthcare needs: a cross-sectional study

Abstract

This study sought to identify health literacy profiles of Australian parents of children with special health care needs (SHCN), and explore the relationships between health literacy, experiences of health care integration, and parent stress. A cross-sectional study design was used. Anonymous data were collected via an online survey including the Health Literacy Questionnaire (HLQ), a modified version of the Pediatric Integrated Care survey (PICS), parent perceived stress, and additional child and family demographic questions including child quality of life using the EQ-5D-Y. We performed a cluster analysis using the HLQ to identify health literacy profiles, and used descriptive statistics to examine relationships between health literacy profiles, health care integration and parent perceived stress. A total of 126 Australian parents of children with varied special health care needs participated, with needs predominantly related to disability (53.7%) and/or respiratory conditions (38.9%). Cluster analysis identified three health literacy profiles, which illustrated different health literacy strengths and gaps. The health literacy profiles were similar in terms of demographic characteristics but the profile with higher health literacy was associated with better experiences of health care integration and lower levels of parent stress. Parents of children with SHCN have specific health literacy strengths along with skills and knowledge gaps, which are associated with how health care is experienced and perceived stress managing their child’s health. Consideration of parent health literacy can provide valuable information to inform more effective models of care and family supports.