Co-creating an intervention to promote physical activity in adolescents with intellectual disabilities: lessons learned within the Move it, Move ID!-project.

ABSTRACT

BACKGROUND: Co-creation is a method to develop acceptable, contextually appropriate and potentially more effective interventions. Adolescents with intellectual disabilities (ID) seldomly participate in research and program development due to the assumption that they lack the capacity to understand and discuss the related topics. OBJECTIVE: This study describes reflections on a co-creation process with adolescents with ID from the point of view of the researchers in developing an intervention to increase physical activity. It was the aim to highlight elements that must be considered when implementing co-creation and consequently formulate important lessons learned. METHODS: Twenty-three adolescents (14-22 y) with mild to moderate ID participated in six co-creation sessions at their school. The objectives and working methods in each session are described. Inductive thematic analysis was conducted on the researchers' reflection forms, which were completed after each session. RESULTS: Seven main themes could be distinguished from the data experiences related to assistance (i.e., teacher presence) during sessions, the importance of building rapport, co-decision making power, the impact of different group dynamics, the relevance of adapted questioning, the influence of co-creative working methods and required characteristics of a co-creation researcher. CONCLUSION: Seven lessons learned were formulated when preparing and conducting co-creation with adolescents with ID. Innovative, concrete (non-abstract) and creative working methods are highly needed. Describing the entire process transparently could be a first step to turn co-creative research into an evidence-based methodology.

Studies show that people with intellectual disabilities are less physically active than the general population. This is a problem, since people with intellectual disabilities experience more health problems, and physical activity might be an important angle to reduce these health problems. However, current interventions to promote physical activity in this target group do not appear to work because they do not match their needs and preferences. Therefore, it is important to develop interventions together with them, in collaboration, what is called "co-creation". This has not happened much in research with people with intellectual disabilities before (and especially not with adolescents having intellectual disabilities), because researchers often have the perception that they do not have the capabilities to understand and discuss research related topics. This study elaborates on the researchers' experiences in conducting co-creative research with adolescents and young adults with mild to moderate intellectual disabilities, and formulates 'lessons learned' so that future researchers can start from these findings when they themselves want to engage in a co-creation process with this target group. The results showed that co-creation is feasible with this target group, if co-creation methods are selected that fit the target group (e.g. making use of visuals, asking concrete (non-abstract) questions and providing clear but short instructions). We suggest that (standardized) innovative and creative working methods are needed when conducting co-creation with this target group. Moreover, to be better armed against the enormous flexibility expected of a co-creative researcher, it might be helpful to make an assessment of the group dynamics before conducting co-creation. The presence and contribution of the physical education teacher in these co-creation sessions was seen as an added value for several reasons. By describing this entire process transparently and in detail, this could be a first step in making co-creation an evidence-based methodology, also for vulnerable populations.