J Pediatr Genet 2020; 09(04): 235-242
DOI: 10.1055/s-0040-1712178
Original Article
Georg Thieme Verlag KG Stuttgart · New York

Stress and Coping in Caregivers of Children with RASopathies: Assessment of the Impact of Caregiver Conferences

Athena Ganetsos
1  Division of Medical Genetics, Department of Pediatrics, Stanford University, Palo Alto, California, United States
,
Ellyn Farrelly
1  Division of Medical Genetics, Department of Pediatrics, Stanford University, Palo Alto, California, United States
,
Pilar Magoulas
2  Department of Molecular and Human Genetics, Baylor College of Medicine, Texas Children's Hospital, Houston, Texas, United States
,
1  Division of Medical Genetics, Department of Pediatrics, Stanford University, Palo Alto, California, United States
› Author Affiliations
Further Information

Publication History

14 February 2020

20 April 2020

Publication Date:
22 May 2020 (online)

Abstract

The study aimed to assess baseline stress and coping mechanisms among caregivers of children with RASopathies (i.e., cardiofaciocutaneous and Costello's syndrome) and the impact of attending biennial caregiver conferences. Caregivers completed the Perceived Stress Scale, Coping Health Inventory for Parents, and demographic surveys prior to family conferences, and 1- and 6-month postconferences. Baseline stress was increased and associated with child age, parental age, and number of conferences attended. After 1 month, caregiver stress was lowered among men and caregivers attending ≥2 support conferences.