Supporting self-determination in people with mild intellectual disabilities and drug-resistant epilepsy: A concept mapping study on the views of relatives and professionals

Background: Epilepsy, especially in combination with mild intellectual disabilities (ID), can substantially affect quality of life and self-determination. Individuals with both conditions face specific barriers to self-determination, including communication difficulties, overprotective attitudes and restrictions in daily activities.

Objective: This study aimed to examine how different stakeholders—relatives, support staff and supporting professionals—perceive and support self-determination in people with mild ID and drug-resistant epilepsy.

Methods: Using a concept mapping approach, ideas on self-determination support were collected in online focus group meetings and individual interviews with relatives (n = 9), support staff (n = 8) and supporting professionals (n = 12). Participants sorted and rated the statements, which were subsequently analyzed using multidimensional scaling and hierarchical cluster analysis. This resulted in three concept maps that were interpreted by an expert group (n = 5).

Results: The 273 statements were grouped into five to seven clusters per concept map. Across the three maps, four core strategies for supporting self-determination were identified: (1) aligning support to individual needs, (2) connecting with the person, (3) promoting personal development and (4) collaborating within the support network. Moreover, each stakeholder group emphasized several unique themes.

Conclusions: Each stakeholder group emphasized different aspects of these strategies, underlining the importance of considering all perspectives and fostering open dialogue about views on self-determination support. Future research should prioritize the development of risk-management guidelines in close collaboration with people with mild ID and drug-resistant epilepsy and their relatives, and the integration of these guidelines into the strategies identified in this study to promote self-determination and quality of life.