The chief executive officer of the Child Neurology Foundation discussed the need to change conversations about children living with neurological disorders and creating more healthy environments for them. [WATCH TIME: 4 minutes]
WATCH TIME: 4 minutes
"Getting the appropriate diagnosis obviously leads to appropriate treatment options—we hope. Not talking about it inhibits additional resource navigation that the clinical team, as well as the family, can be pursuing to improve that [individual’s] quality of life."
Stigma, both enacted and internalized, is experienced by children with chronic neurologic conditions and has been found to increase psychological distress, lower self-esteem, and impact social engagement, thus lowering quality of life. For years, organizations such as the Child Neurology Foundation have been dedicated to creating a safe space for children with neurological conditions and their families by providing services and helping guide them through questions they may have.
In terms of eliminating these stigmas, Amy Brin, MSN, MA, PCNS-BC, the executive director and chief executive officer of the Foundation, believes that the community has made progress, but that there is more work to be done. In fact, while it might not be visible to everyone, 1 in every 5 children have a neurological condition. Not acknowledging the condition can also lead to negative consequences, including the increased social isolation, she said.
In an interview with NeurologyLive®, Brin provided insight on the ongoing efforts to eliminate stigmas among children with neurological conditions and the steps that still need to be taken. She also discussed the negative impacts of concealing conditions and the need to build support systems dedicated to helping these individuals out.