Disorders of consciousness research project

Dr Jonathan Pool, a music therapist at The Children’s Trust, tells us about a new research project on disorders of consciousness.

The project will measure the outcomes of MuSICCA, an assessment tool for children and young people with disorders of consciousness.

  We know that a growing number of children and young people are surviving severe acquired brain injuries due to advances in healthcare. However, many fail to emerge from coma and continue to live with disorders of consciousness (DOC). My colleagues and I initiated a research project as a way to develop and validate an assessment tool that supports goal-planning for children and young people who have DOC. The assessment tool—the Music therapy Sensory Instrument for Cognition, Consciousness and Awareness (MuSICCA) – will be the only or one of the very few, that are validated for assessing awareness of children and young people with disorders of consciousness. This is important because having assessment tools validated means that families and clinicians know how much we can trust the information they give us about something. The children affected by disorders of consciousness cannot tell us about their awareness and the teams working with them must find trustworthy ways of finding out this information. This helps the teams plan goals, treatment, care and education for each individual child, suited to their specific needs and sensory capabilities. It helps reduce over-stimulation and under-stimulation. Families will benefit from the information from the MuSICCA and greater certainty about what their child is able to experience, tolerate and use in terms of sensory stimulation. The research is being led by The Children’s Trust and will involve participating professionals and organisations from the UK, Ireland and the USA. The British Medical Journal has published an article about the research project, which provides more information on the proposed methods and analysis of the research project. The research will be completed in approximately the next 3-4 years.
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