The case of the missing perspective…

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This project is focused on gathering perspectives from people about the equipment and services they receive from the NHS in order to inform improvement. There is a growing emphasis on the importance of engaging patients in evaluating and developing healthcare. Traditional methods of gathering data from patients include questionnaires, surveys, focus groups and interviews. Some patients are easier to engage in these methods of evaluation than others. People who rely on alternative and augmentative communication (AAC), or communication aids, not only have difficulty communicating but may have concurrent physical and/or cognitive difficulties which limit their ability to participate in giving feedback via traditional methods too. As a speech and language therapist, I am dedicated to supporting people who have communication difficulties to get their message across. As a clinical researcher, the experiences and needs of people who have communication difficulties and use AAC are at the heart of my academic enquiry. Professionals need to understand what people want to achieve from using communication aids in order to provide the most effective equipment and support. Thus, I started my current investigation to uncover the perspectives of people who have complex communication needs and may benefit from AAC. Where would I find them? Or did they ever exist at all?

During a research secondment, I attempted a protocol-driven literature review (dipping my toe in the water of the world of systematic reviewing), exploring what interventions were recommended for adults who required AAC to support their communication. I discovered that there was little consensus in the literature and few large scale studies. I asked people who used AAC and who were on (or had been known to) my local services’ caseload what they considered helped them to use their AAC effectively.  I returned to the literature to find out what others had found when they asked people who used AAC about their experiences and uncovered very few papers that directly engaged with people who use AAC. The plot thickens.

I deduced that further investigation into the search for user perspectives literature is required. I intend to build on the literature searches that I have used so far to hunt down any other research that captures user perspectives in the field of AAC. I will continue this line of enquiry by looking at key publications, by following up on citations in those publications and by wading through the grey literature. I am interested in finding out who has used direct methods for gathering feedback (i.e. interviews, focus groups) from people who rely on AAC and what these people say about their experiences. The case continues…