Abstract
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.
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.
| Original language | English |
|---|---|
| Pages (from-to) | 1326 - 1336 |
| Journal | Journal of Intellectual Disabilities |
| Volume | 36 |
| DOIs | |
| Publication status | Published - 2023 |
Keywords
- epilepsy
- intellectual disabilit
- interpretative phenomenological analysis
- self-determination
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Exploring the experiences of self-determination of individuals with mild intellectual disabilities and epilepsy
Haenen, A. (Creator), Frielink, N. (Creator), van Ool, J. S. (Contributor), Tan, F. I. Y. (Creator) & Embregts, P. J. C. M. (Creator), DataverseNL, 21 Oct 2024
DOI: 10.34894/wfcvso, https://dataverse.nl/citation?persistentId=doi:10.34894/WFCVSO
Dataset