A survey of adult caregivers of people with developmental and epileptic encephalopathies: A long-term care planning needs assessment.

Objective: Provide the perspective of caregivers planning for adulthood in people with developmental and epileptic encephalopathies (DEEs).

Results: Family members (N = 134) of people with DEE (1-44 years old) responded to an anonymous, internet-based survey to assess the needs of DEE families. Respondents included parents/guardians (n = 121, 90.

Psychosocial impact on siblings of patients with developmental and epileptic encephalopathies.

Objective: Caring for children with developmental and epileptic encephalopathies (DEEs) places substantial demands on the entire family unit, including siblings. The Sibling Voices Survey assesses parental and sibling responses to questions designed to assess how children adapt to growing up with siblings with DEE.

Methods: Participants responded to 1 of 4 online, age- and role-specific surveys (9-12, 13-17, and ≥18-year-old [adult] siblings; parents responded with perceptions of their unaffected child's/children's feelings).