‘I Didn't Know That in the Background They Write Reports About Me’: Understanding the Health Literacy Implications of Allied Health Reports through the Experiences of People With Lifelong Communication Disability

BACKGROUND AND AIMS: People with lifelong communication disability receive services, including written reports, from allied health professionals. Allied health reports can contribute to health literacy barriers or facilitators in relation to people with communication disability accessing, understanding, appraising, and using the information in the reports. Research into allied health reports has not adequately included the experiences of people with lifelong communication disability and this group are also underrepresented in the health literacy research. The aim of this study was to understand the experiences and views of people with lifelong communication disability about accessing, understanding, appraising, and using information in their allied heath reports. This was done to inform clinical implications for report writers and reduce health literacy barriers for people with lifelong communication disability. METHODS: This qualitative study applied constructivist and pragmatist methodology underpinned by a well-established health literacy theoretical model. Australian adults with lifelong communication disability were recruited through purposive and snowball sampling methods. Participants able to give their own informed consent and who had received services from at least one allied health professional were eligible to participate. In-depth interviews were analysed using reflexive thematic analysis to derive main themes and component subthemes. RESULTS: Two main themes were identified in the data: 'This is personal' and 'These are our documents', each with three subthemes. Although all participants wanted to receive, read, and understand their allied health reports, only six of the nine had received and read their allied health reports. For allied health reports to fulfil the intended purposes, participants wanted allied health professionals to build trusting relationships and use feedback to write reports that accurately represent them and their support needs. CONCLUSIONS: People with lifelong communication disability have a right to access their health information in formats that they can understand and use to achieve their goals. However, they may not be informed that reports are being written about them or given their reports. Reading allied health reports is a highly personal and emotional experience for people with lifelong communication disability who emphasise the importance of building and maintaining trusting relationships with allied health professionals. To reduce health literacy barriers, allied health professionals should provide people with lifelong communication disability access to the information in their own reports in ways that can be understood and used. WHAT THIS PAPER ADDS: What is already known on the subject Health literacy involves the ability to access, understand, appraise, and apply health information in the context of individual and environmental barriers and facilitators. People with lifelong communication disability have not adequately been included in health literacy research to date and are underrepresented in research into allied health reports. What this paper adds to existing knowledge People with lifelong communication disability do not always receive a copy of their allied health reports. When they do, reading these reports can be a personal and emotional experience. People with lifelong communication disability want to access and understand their reports. People with lifelong communication disability also want trusting relationships with allied health professionals where they can give feedback on reports for more accurate representations of themselves. What are the potential or actual clinical implications of this work? Allied health professionals should support the health literacy of people with lifelong communication disability. They need to build and maintain trusting relationships with their clients, provide access to reports, and listen to feedback on the reports so that people with lifelong communication disability can understand and use their own report to achieve their goals.