Affiliation:
1. Tranzo, Tilburg School of Social and Behavioural Sciences Tilburg University Tilburg The Netherlands
2. Centre for Residential Epilepsy Care Epilepsy Center Kempenhaeghe Heeze The Netherlands
Abstract
AbstractBackgroundWhile epilepsy can decrease quality of life and self‐determination in individuals without intellectual disabilities, the impact of epilepsy on experienced self‐determination in people with intellectual disabilities remains unclear.MethodWe conducted semi‐structured interviews with six adults (four men, two women) aged 30–61 with mild intellectual disabilities and drug‐resistant epilepsy to investigate their experiences of self‐determination. The data were analysed using Interpretative Phenomenological Analysis.ResultsThree main themes were identified: (A) I am a competent person with epilepsy; (B) My social needs: being accepted as I am and stability in relationships; and (C) Being in control.ConclusionsIn this study, the impact of epilepsy on experienced self‐determination of people with mild intellectual disabilities outweighs the influence of intellectual disabilities. Identity formation, friendships with peers, and autonomy support in risk management are identified as important topics in supporting this group.
Subject
Developmental and Educational Psychology,Education