Participatory development of eHealth technologies for people with intellectual disabilities : recommendations and lessons learned

Background: The use of digital technologies, such as smartphones and computers, has increased noticeably for people with intellectual disabilities (ID). Digital technologies focusing on health opens doors for better participation in society and independence in the everyday lives of people with ID. However, these eHealth technologies do not always meet the needs of people with ID, as this group often gets excluded from the development of new eHealth interventions. This could therefore impair the benefits eHealth technologies can provide for this specific and complex group of people. Participatory development (PD), in which people with ID are involved throughout the entire development process could help meet the needs of this target group, as PD will allow the development of an eHealth technology more suited for people with ID. However, only a scarce number of studies focus on stakeholder involvement in the eHealth development process, amplifying the need for PD for people with ID. Aim: The aim of this study, therefore, focuses on the key factors for a successful PD of eHealth technologies for people with ID. More concretely the study aims to identify frameworks, models and approaches used for PD, which stakeholder groups could contribute to PD and how stakeholders are currently involved in the development process, as well as aiming to describe the best practices and lessons learned from PD for people with ID. Method: A qualitative multi-method research approach was used in this study. Consisting of a scoping review and semi-structured interviews. The scoping review was performed to get insight into the PD processes described in the literature, the interviews focused on gaining knowledge about the practical experiences of professionals who had involved people with ID in the development process of eHealth. Both methods were carried out separately and consisted of a data extraction process and an iterative coding process, data was later synthesized and combined into overarching categories. Results: A total of 22 studies focusing on PD for people with ID were included in the scoping review, complemented by five interviews with professionals with experience in ID and PD. Frameworks, models and approaches were used in almost all (n=20) studies, the variation in frameworks used was wide, as almost all studies used their own specific framework. Compared to the interviews the use of frameworks was scarce, as not one interviewee mentioned the direct use of a framework. The identified stakeholders could be divided into seven stakeholder groups, healthcare professionals were the largest group mentioned in the identified studies and relatives the biggest group mentioned in the interviews. The current involvement of stakeholders and people with ID in the PD could be divided into different subsections, which highlighted: communication, roles of people with ID and other stakeholders, moment of PD, effects on people with ID when participating in PD, benefits for research and eHealth, pitfalls and problems and PD session formats, structures and methods. The best practices and lessons learned derived from the identified studies and interviews mainly highlighted the focus on equality, emerging yourself in the target group, visualizing PD sessions and including all stakeholders in PD. Conclusion: Following the results, the recommendation and lessons learned from this research focus on communication, set-up of PD sessions and the involvement of relatives and support staff. Frameworks models and approaches can be taken as guidelines for PD combined with critical thinking. PD should be flexible and add value to all involved stakeholders. Nevertheless, further research is needed to validate these recommendations to help optimize PD with people with ID.