Welcome to the Identifying Appropriate Symbol Communication Aids for Children who are non-speaking: clinical decision making project update for March 2018.
The “Identifying Appropriate Symbol Communication Aids for Children who are non-speaking: clinical decision making” (I-ASC) project was awarded funding by the NIHR’s Health Services and Delivery Research Programme in January 2016. A ground-breaking and exciting project led by Professor Janice Murray, I-ASC aims to enhance the quality of life for children who need electronic augmentative and alternative communication (AAC).
A collaborative team from Manchester Metropolitan University, University of Leeds and Barnsley Hospital NHS Foundation Trust delivered a mixed methods study, to develop 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?
Special interest groups around the United Kingdom have contributed to the project through partaking in the various work packages and helping to raise awareness. Examples of these groups include speech and language therapists, occupational therapists, clinical scientists, teachers, people who use AAC and their families and support teams.
There were six different strands to the study:
The first 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 the communication aids considered in decision making;
- clinical decision making related to aided communication in allied health professions
The second strand involved focus groups with professionals who are actively involved in assessments to understand their current processes of decision making.
In the third strand children and young people who use AAC were invited to take part and share their experiences of AAC assessments. Children and young people in three age ranges were invited, 4-6 years, 10-12 years and then 18 plus. Besides interviewing the children and young people, we also interviewed their family member(s) and the professional team around them to appreciate what the assessment process means to them.
Informed by the first and second strand, the fourth work package involved a quantitative element of the study. During this strand, surveys and discrete choice experiments were used to evaluate clinical decision making processes. Professionals were 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. The aim of this stage was to validate what has found out in the earlier focus groups and interviews.
These results were combined to produce the fifth stage, a 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 were evaluated using focus groups, including people who contributed earlier to test their soundness and reliability for use in the real world.
The final aspect of the project is about dissemination. Led by the 2 co-researchers from Manchester Metropolitan University, this element started on day one of the project with awareness raising and continues beyond the point the project outcomes are achieved.
on, email us at I-ASC@mmu.ac.uk.