Exploring the experiences of self‐determination of individuals with mild intellectual disabilities and epilepsy

• Published in: Journal of applied research in intellectual disabilities 2023-11, Vol.36 (6), p.1326-1336
• Main Authors: Haenen, Alexandra, Frielink, Noud, Ool, Jans, Tan, Francis I. Y., Embregts, Petri J. C. M.
• Format: Article
• Language: English
• Subjects: Adults; Competence; Empowerment; Epilepsy; Experience; Intellectual disabilities; Interpersonal Relationship; interpretative phenomenological analysis; Locus of Control; Mild Intellectual Disability; Qualitative research; Quality of Life; Self Determination; Self image
• ISSN: 1360-2322; 1468-3148
• DOI: 10.1111/jar.13151

Background While 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. Method We 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. Results Three 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. Conclusions In 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.