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

## TL;DR

This study explores how parents of teenagers and young adults with epilepsy and intellectual disability make decisions about contraception, focusing on their concerns and preferences.

## Contribution

The study provides new insights into contraceptive decision-making preferences of parents of adolescents with epilepsy and intellectual disability.

## Key findings

- Parents prioritize managing menstruation over preventing pregnancy when considering contraception.
- Many parents fear potential side effects of contraception, perceiving risks as outweighing benefits.
- Ease of administration is a key factor, with pill form being preferred over longer-acting methods.

## Abstract

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

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 (eg, mild/moderate/severe) were eligible.
We audio-recorded and transcribed interviews. Two coders performed
qualitative thematic analysis.

Twenty-five parents/guardians completed the interviews. Themes
included the following: (1) Parents’/caregivers’ 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 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 health
care 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.

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.