Hearing parents' voices: A priority-setting workshop to inform a suite of psychological resources for parents of children with rare genetic epilepsies

• Main Authors: Suzanne M. Nevin (Author), Claire E. Wakefield (Author), Ann Dadich (Author), Fleur LeMarne (Author), Rebecca Macintosh (Author), Erin Beavis (Author), Rani Sachdev (Author), Ann Bye (Author), Kenneth Nunn (Author), Elizabeth E. Palmer (Author)
• Format: Book
• Published: Elsevier, 2022-12-01T00:00:00Z.
• Subjects: article
• Online Access: Connect to this object online.

Objective: To understand parents' of children with developmental and epileptic encephalopathies needs and preferences for psychological resources. Methods: Using a person-based approach, a multidisciplinary panel of clinician and researchers (n = 9) hosted a priority-setting workshop to 1) unde...