Abstract
BackgroundThe Scottish Intercollegiate Guidelines Network (SIGN) is the leading national clinical guideline producer in Scotland. Improved design and dissemination of guidelines produced for the public can empower people to take an active role in self-management and shared decision-making. The public version of the guideline examined covered getting assessed and diagnosed with autism, and approaches that can help. The aim of this study was to test a public version of a guideline for the parents of children and young people with autism, implement improvements, and identify what works in making it usable and accessible.MethodsWe recruited mothers from across Scotland. User testing involved formal ‘think aloud’ semi-structured interviews that guided users through the booklet. Interviews took place individually and were recorded and transcribed. Key findings were identified and themed using the honeycomb user experience model.ResultsFourteen user-testing interviews were conducted. Facilitators for usability and desirability of the guideline included the chunking of text, consistent use of colour and boxes to highlight important information. Simple language, written in a tone of partnership, helped to engage mothers. Value arose from the guidelines ability to explain the process of diagnosis and make mothers feel empowered in their relationships with healthcare professionals. There was a lack of consensus on the usefulness of rating the strength of evidence and recommendations.ConclusionThere was a marked similarity between what was important to the mothers and what has been found to be important to other groups. The involvement of service users and carers in the guidelines development was key to its credibility. One size does not fit all in presenting evidence-based recommendations to the public and it is a challenge to provide sufficient information while avoiding information overload. Recommendations and evidence levels are suitable for use in public versions, but these should be kept as simple as possible.
Highlights
The Scottish Intercollegiate Guidelines Network (SIGN) is the leading national clinical guideline producer in Scotland
Fearns et al BMC Health Services Research (2022) 22:77 recognition of the value of public versions, an evaluation of guidelines on the resection of hepatocellular carcinoma found that only 2 of 22 guidelines had developed information for the public [5] and a review found just 24% of tools developed to aid the implementation of guidelines were for the public [6].The DECIDE (Developing and Evaluating Communication Strategies to support Informed Decision and practice based on Evidence) project [7] found that awareness of clinical guidelines is low in the general public, and that even when people are aware of them they may not perceive them any more positively than alternative sources of health information [1, 4, 8]
The points of key importance about the credibility, usability, findability and desirability of this public versions of a clinical guideline for parents and carers of children and young people with autism, were similar to those identified by the DECIDE project in other groups [4, 8]
Summary
The Scottish Intercollegiate Guidelines Network (SIGN) is the leading national clinical guideline producer in Scotland. Guidelines are developed to guide clinicians’ decision-making, but there is a growing interest and demand for public versions of clinical guidelines. In the UK, both the Scottish Intercollegiate Guideline Network (SIGN) and the National Institute for Health and Care Excellence (NICE) produce versions of their guidelines for the public. Public versions can help people to participate more actively in their care and engage in shared decision-making [4]. “One size does not fit all” in public versions, but it is clear that a guideline must be attractive, easy to use and be available in multiple formats to be accessible and useful to the public [7]
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