Monitoring and supporting development in children on home invasive mechanical ventilation.

Abstract

Each child on home invasive mechanical ventilation is unique with different diagnoses, co-morbidities, families, environment, needs, and developmental conditions. While studies mostly focused on survival and morbidities of these children, every child on home invasive mechanical ventilation has the right to reach his/her optimal developmental potential. This can be achieved by monitoring and supporting child development holistically, especially in the early childhood period when brain development is happening rapidly and plasticity is highest. Key theory-based frameworks should be used as universal principles to address child development. These are bioecological theory, family-centered care, World Health Organisation International Classification of Functioning Disability and Health framework, monitoring approach, child-friendly healthcare approach, and transdisciplinary care. Monitoring and supporting the development of children on home invasive mechanical ventilation aims to support children in reaching their own full developmental potential, to keep track of children's development, know and support the child's and family's strengths and vulnerabilities over time, address risk factors, support the child's development with the family, use specialized services when needed. When all these principles are put together for children on home invasive mechanical ventilation, monitoring and supporting child development should be a standard approach urgently and holistically in cognitive, receptive, and expressive language, fine and gross motor, relating, play and self help domains, while committing to strengths-based family-centered care, functionality, participation in life, avoidance of stigma, and providing transdisciplinary follow-up.