Preferences and Experiences of Parents/Guardians of Adolescents and Young Adults with Epilepsy and Intellectual Disability on Decision-Making Surrounding Contraception.

Objective: To explore the preferences of parents/guardians of adolescents and young adults (AYA) of childbearing potential with co-occurring epilepsy and intellectual disability (ID) regarding decision making on contraception.

Methods: We conducted semi-structured interviews with parents/guardians of female AYAs (12-28 years old) with co-occurring epilepsy and ID recruited from a tertiary-care children's hospital. We confirmed the diagnoses of epilepsy and ID with the patient's neurologist and parent/guardian. All degrees of ID (e.g. mild/moderate/severe) were eligible. We audio-recorded and transcribed interviews. Two coders performed qualitative thematic analysis.

Results: Twenty-five parents/guardians completed interviews. Themes included: 1) Parents/caregiver's desire for birth control for their child was more centered around menstruation-related concerns rather than pregnancy prevention; 2) Many parents were afraid of potential adverse side effects of contraception for their children, including perceptions that risks might outweigh benefits; 3) A common important factor in contraceptive decision making was ease of administration and generally the pill form was preferred, 4) Longer-acting methods, if chosen, were largely selected due to trusting recommendations from healthcare providers, yet were often feared due to perceptions of lower ease of reversibility if problems arise as well as greater challenges in delivery or placement.

Conclusions: Findings may inform interventions to improve contraceptive care for AYAs with epilepsy and ID including development of discussion guides and decision aids for parents/caregivers.