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Research partnerships between universities and the NHS can be incredibly rewarding. Here in NHS Ayrshire and Arran, the Learning Disability Service has completed a second project in partnership with the University of the West of Scotland.
This one looked at the experiences of clinicians, carers, and people with a learning disability in relation to the production and use of accessible information, with particular attention being paid to easy-read resources. The development of the project reflected the fact that despite strong arguments for the implementation of, in particular, easy-read resources, the evidence base regarding their efficacy was still very much developing, and the experiences of people using and working with them on a day-today basis had, arguably, been under-explored.
With this in mind, the project researcher interviewed people with a learning disability, and carers (paid and unpaid), as well as engaging with clinicians via an online survey and focus groups. Crucially, clinicians were drawn from a variety of backgrounds: a Learning Disability Service; Primary Care; an Adult Mental Health Services; and a Child and Adolescent Mental Health service. A key aim for the project was to explore the relevance of accessible information resources beyond the learning disability population.
Interview and focus group data emphasised the need to tailor information to the needs of the individual, and highlighted the ways in which standard information can disadvantage those with known or hidden literacy issues. Arguments for the general relevance of easy read information were off-set against concerns that many would find the materials ‘child-like’. People with a learning disability spoke positively about the relevance of scenarios using photographs, the use of simpler language and larger font. Carers described their key role as communication partners, and the way in which accessible information was used to frame discussions around health.
Providing information to meet the specific needs of the individual was a prominent theme for staff, carers and people with learning disabilities. At the same time, there was evident scope for the broader promotion of accessible information, as a means of addressing service-created inequalities, for all that this raised many questions with participants regarding costs and time involved in production, and the commitment of services to support and promote such approaches. Never-the-less, the frequently expressed concerns regarding hidden low-literacy populations, and other groups for whom information processing could present issues, underlined the relevance of taking a long, hard look at the complexity of a lot of the information provided routinely within the public sector – including a lot of that which is labelled as being ‘easy-read’.
Productive avenues for developing this agenda might lie in the greater use of established knowledge in relation to cognition and text/image processing, as well as in the considerable (and often under-used) expertise of designers and those involved in the development of effective user interfaces. The role of technology in supporting wellbeing is only going to increase, and in many ways, the format of information presentation within that technology provides fertile ground for pursuing simpler, more effective information provision, for everyone. As with so much at the moment, an openness to new ideas in the interests of forging effective relationships with (potentially) unfamiliar partners will be key. And SAIF will be at the fore!
To find out more see ‘The use of accessible information in the Healthcare of people with learning disabilities final report’ by Dominic Jarrett, Melody Terras and Sharon McGregor.
If you would like more information please contact:
Research and Information Officer
Learning Disability Service
NHS Ayrshire and Arran
Tel. 01563 826423