Psychological and psychiatric service use among family caregivers of individuals with Angelman Syndrome: A cross-sectional study.

OBJECTIVES

This study aims to assess the perceived impact of caregiving for persons with Angelman Syndrome (AS) on the health of family caregivers and the extent and costs of using psychological and psychiatric services.

METHODS

An anonymous, computer-assisted online survey among 84 family caregivers was conducted in collaboration with the Foundation for Angelman Syndrome Therapeutics Poland.

RESULTS

86.9% of caregivers experienced a negative impact of long-term caregiving on their physical and mental health. Many parents neglected their own health needs, including undergoing medical examinations (81%), taking prescribed medications (41.7%), engaging in physical activity (81%), and maintaining healthy dietary habits (53.5%). 63.1% of parents reported seeking specialist consultations or participating in health-related interventions, while 33.3% used professional psychological and psychiatric care, including pharmacotherapy (15.5%). A correlation was observed between the use of psychological and psychiatric ser- vices and both the age of the individual with AS and the occurrence of epileptic seizures in the past year. Most of the costs of the parents' psychological and psychiatric care incurred in 2024 were covered by private funds. While the total expenditure for such care amounted to 32,604.50 Euros, 96.2% of this sum was paid exclusively out of pocket.

CONCLUSIONS

To alleviate caregiver stress and burden, there is an urgent need to develop effective interventions and emotional support systems for caregivers. It is necessary to adopt a comprehensive approach to the mental health of families of individuals with AS, incorporating professional psychological and psychiatric care. Additionally, adjustments in the reimburse ment system for psychiatric services provided to caregivers are needed.