A child with a neurodisability needs a wide circle of support. Parents, siblings, educators, and the wider community all play an important role in improving outcomes. In turn, parents and family members need their own support to manage challenges and navigate the health care system.
Researchers funded by Kids Brain Health Network are learning what really matters to children and youth with neurodisabilities and their families. With effective translation, this knowledge is improving programs on offer and helps families gain access to effective support.
Autism Spectrum Disorder (ASD)
What does it mean to grow up with ASD? What kind of support is most effective? Our researchers are delving into the lived experiences of youth with ASD, and gathering their perspectives as expressed through stories, images and video. The ASD Voices project aims to translate insights gained into better, more targeted support for youth living with autism and their families.
Cerebral Palsy (CP)
When a newborn baby is diagnosed with an acute brain injury, parents are often in shock. At the same time, clinicians are sharing diagnoses, and making predictions and recommendations while faced with a significant amount of uncertainty. Our Neuroethics researchers recognized a real need for improvement these early interactions between clinicians and parents, and following extensive consultation, they generated a position paper they are working to translate into clinical practice.
Fetal Alcohol Spectrum Disorder (FASD)
While multiple organizations and programs offer support to children and youth with FASD and their families, navigating the system can be a challenge and often, families are not aware of all the resources available. With funding from Kids Brain Health Network, the Fetal Alcohol Resource Program is bringing together key community organizations and mobilizing expertise from a range of sectors to coordinate service delivery, raise awareness of resources, and increase access to different kinds of support in the Ottawa region. In addition, this program offers training workshops to build better understanding of issues associated with FASD in frontline staff in mental health and education organizations.