CATCH colleagues, Rebecca Palmer and Mark Jayes, developed and evaluated a tool to support professionals to engage people with communication difficulties in health research studies.
Communication disorders may be associated with acquired health conditions, including stroke, brain injury, Parkinson’s disease and dementia, and lifelong conditions such as learning disability and cerebral palsy. People with communication disorders have often been excluded from health research studies, perhaps because the process of gaining informed consent from this population is considered to be challenging. This is unethical and limits the generalizability of research findings.
The Consent Support Tool has been developed specifically to facilitate involvement of people with communication disorders in health research studies, and to help health research professionals obtain informed consent from this population. It offers researchers an easy-to-use, practical, clinically evaluated tool which has been designed to help identify individual communication needs, and recommend strategies for providing accessible information about a research study, and for supporting participation within the study.
The accompanying manual explains how and why to use this tool in the context of the Mental Capacity Act (2005), and recommends strategies to help evidence that any consent taken is informed.
The Consent Support Tool book is available to purchase here.