The perspectives of agents working in positions of authority within health sector organisations regarding the involvement of experts by experience with an intellectual disability: An exploratory study

Background:
In this study, agents working in positions of authority within health sector organisations shared their perspectives concerning both the involvement of experts by experience with intellectual disabilities within their own organisations and their recommendations as to how best to involve experts by experience in policy and practice.

Method:
Using purposive sampling, eight agents were selected for semi-structured interviews. The interviews were analysed using thematic analysis.

Results:
The results indicated the importance of involving experts by experience. However, they also highlighted several barriers such as a lack of emphasis on genuine attention, insufficient visibility and recognition of expertise, and a lack of support for sustainable inclusion.

Conclusions:
Agents are willing to involve experts by experience in health sector organisations, but practical challenges hindered them from actually doing so. This study emphasises the importance to find solutions for better inclusion in policies.