When studying neonatal seizures, researchers often focus on the patient experience, leaving the emotional journey of parents less explored. Given that HIE is the top cause of neonatal seizures, it is reasonably assumed that our HIE parents navigate their own complex emotional path throughout this journey, marking a significant gap in providing them with effective, tailored support.
That’s why we’re proud to partner with the Neonatal Seizure Registry, not only because many of our Hope for HIE parents are actively involved as site partners and enroll in their studies, but also because their team shares our commitment to understanding how HIE’s long-term impacts affect parents’ mental health and well-being.
This recent study was conducted at Neonatal Seizure Registry sites in partnership with the NSR Parent Advisory Panel and aimed to characterize these emotional experiences. Its results highlight the need for future interventions to recognize and bolster parent resilience and drive meaningful improvements in how we effectively support essential members of our community – our parents and caregivers.
This is a strong area of focus that the NSR continues to study, and we’re eager to continue contributing to this research to improve the quality of life for all of our community members.
To connect in to Hope’s comprehensive support network, including access to our licensed social worker, certified child life specialist, and trained Peer Support Mentors, visit HIE.Support.
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