Supporting self-determination of individuals with severe or profound intellectual and multiple disabilities according to relatives and healthcare professionals: A concept mapping study

Background: This study aimed to identify perspectives of relatives and healthcare professionals regarding self-determination support for people with severe or profound intellectual and multiple disabilities, highlighting agreements and differences in their viewpoints.

Method: Following a concept mapping study, online focus group meetings yielded statements on self-determination support from relatives (residential facilities: n = 6, family homes: n = 7) and healthcare professionals (residential facilities: n = 9, family home: n = 5). Participants clustered and rated statements, resulting in four concept maps interpreted by experts (N = 6).

Results: The 285 statements were categorised into 5-7 clusters per map, revealing key strategies for self-determination support: communication and choice making (facilitated by aids), sensitivity, familiarity, and collaboration among involved parties.

Conclusion: Each group placed different emphasis on these strategies, highlighting importance of continuous support in their implementation. Future research should prioritise practical implementations of these strategies to enhance self-determination.

Keywords: concept mapping study; healthcare professionals; relatives; self‐determination; severe or profound intellectual and multiple disabilities.