Dataset on the psychosocial impact in families with children with developmental and epileptic encephalopathies

Area of Science:

• Pediatric Neurology
• Psychosocial Health
• Caregiver Support

Background:

• Caring for children with developmental and epileptic encephalopathies (DEE) presents significant challenges for primary caregivers.
• The complex care needs associated with DEE negatively affect caregiver quality of life, leading to increased stress, anxiety, and depression.
• Caregiver well-being is impacted across multiple domains, including social support, employment, and family relationships.

Purpose of the Study:

• To quantitatively assess the psychosocial impact of caring for a child with DEE on caregiver quality of life.
• To provide policymakers with essential data to inform support services for families affected by DEE.
• To highlight the need for interventions supporting caregiver well-being.

Main Methods:

• Development of a database utilizing the Childhood Rare Epilepsy Social Impact Assessment (CRESIA) instrument.
• Quantitative assessment of caregiver quality of life using the CRESIA psychosocial impact measurement tool.
• Focus on measuring the psychosocial burden associated with caring for children with DEE.

Main Results:

• The study established a quantitative framework for evaluating the psychosocial impact on caregivers of children with DEE.
• The CRESIA instrument was employed to gather data on caregiver quality of life.
• The findings underscore the measurable psychosocial effects on individuals providing care for children with these complex neurological conditions.

Conclusions:

• Effective support systems are vital for caregivers of children with DEE to mitigate negative psychosocial impacts.
• Quantitative data is essential for policymakers to address the needs of families managing DEE.
• Promoting caregiver well-being is critical for the long-term health of families affected by developmental and epileptic encephalopathies.