SERENITY: SEveRE Neurological Impairment and children with medical complexity
Severe Neurological Impairment (SNI) is a term that is commonly used in the medical literature to describe children with significant disability and complex medical needs. These children have unique challenges and almost every organ system is affected both directly and indirectly by their neurological impairment. This may have a significant effect on the quality of life of these children and their families. Consistency in research in the area of SNI is hampered by the lack of a consistent definition of the term. To date, no one has quantified the multiorgan dysfunction that is associated with SNI. This impairs our ability to adequately plan healthcare services and ensure that these children and their families are receiving the support that they require.
The aims of the SERENITY project are:
- To create a consensus-based definition of Severe Neurological Impairment
- To quantify the multi-organ dysfunction associated with SNI
- To assess the quality of life of these children and their families.
McDonald, D.; Allen, J.; Hauer, J. Severe Neurological Impairment—The challenges of definition, healthcare planning and end of life care. In Proceedings of the Combined AACPDM 73rd Annual and IAACD 2nd Triannual Meeting, Anaheim, CA, USA, 21 September 2019.
Allen J. Caring for Children with Complex Needs: The Irish Perspective. In Proceedings of the Combined AACPDM 73rd Annual and IAACD 2nd Triannual Meeting, Anaheim, CA, USA, 21 September 2019.
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