Welcome to the Identifying Appropriate Symbol Communication Aids for Children who are non-speaking: clinical decision making project update for November 2016.
Since the grant was awarded by the NIHR’s Health Services and Delivery Research Programme in January 2016 the project team have made a flying start. First off we realised that we could not say the full project title every time we referred to the project, so our short hand for this is the I-ASC project.
Under the leadership of Professor Janice Murray this is a ground breaking and exciting project that is aimed at enhancing the quality of life for children who need electronic augmentative and alternative communication (AAC).
By January 2017 every part of the project team will be working on the project. Manchester Metropolitan is collaborating with the University of Leeds and Barnsley Hospital NHS Foundation Trust. This is a mixed methods study to deliver new decision making tools to support professionals in health, education and social care, as well as families and other key partners in the assessment process for those who need AAC.
- What attributes related to the child, and generic communication aids, do clinicians consider important in making decisions about communication aid provision?
- What other factors influence or inform the final decision?
- What attributes are considered important by other participants (e.g. the child and family) and how do these impact in the short, medium and long term?
- What decision support guidance and resources would enhance the quality, accountability and comparability of decision making?
So far we have visited special interest groups around England and Scotland meeting with speech and language therapists, occupational therapists, clinical scientists, teachers, people who use AAC and their families and support teams to raise awareness of the project and invite their support to take part in the various work packages.
There are six different strands to the study:
The first, which is coming towards the close involved 3 systematic reviews to establish current evidence relating to :
- speech, language and communication development with specific reference to children using symbol communication aids;
- the language and communication characteristics of both the child and the communication aids considered in decision making;
- clinical decision making related to aided communication in allied health professions
The second strand, which is work in progress, is to undertake focus groups with professionals who are actively involved in assessments to understand their current processes of decision making.
These first two outputs will be used to inform the fourth work package.
The third strand of the study, just beginning now, is working with 15-20 children and young people in three age groups, ages 4-6 years, ages 10-12 years and then age 18 plus, who are either going through an assessment for the first time or being reassessed. Besides interviewing the children and young people we are also interviewing their family member(s) and the professional team around them to appreciate what the assessment process means to them.
The fourth work package is the quantitative element of the study, this uses surveys and discrete choice experiments to evaluate clinical decision making processes. During 2017 professionals are being asked to make choices between various attributes, derived from the earlier work packages, typically considered in the assessment process to find out which determine their recommendations for prescribing AAC. This stage in the study aims to validate what has found out in the earlier focus groups and interviews.
The results from all these will then be used to develop the fifth stage decision making resource to support professionals and provide those who use AAC and their families with accessible knowledge and information about what to expect from the assessment process. Before being widely disseminated these resources will go back to focus groups, including people who contributed earlier to test their soundness and reliability for use in the real world.
The final part of the project is about dissemination. Led by the 2 co-researchers from Manchester Met this started on day one of the project with awareness raising and will continue to beyond the point the project outcomes are achieved.
For further information, email us at I-ASC@mmu.ac.uk.