Aims of the project:

‘Get Wise’ is a European collaborative project between Trinity Centre for Ageing and Intellectual Disability and  Erasmus MC. Guided by the mission to promote empowerment through knowledge, the programme delivers health education through an innovative online platform in an accessible easy-read manner designed with people with intellectual disability (ID).

How were people found who wanted to be involved?

Independent advocacy groups of individuals with intellectual disability were invited to contribute to the project. Service providers were approached, ethics approval was gained and an invite went to a number of service users. In total over 30 individuals from Ireland and a similar number from the Netherlands participated in the project.

How were people involved?

The project adopts a strengths-based approach to co-creation, promoting involvement in the development of this online programme. Focus groups collaboration was the original plan however due to COVID19, the collaboration had to be changed and online interviews were conducted, ensuring individuals with ID could contribute despite physical distancing requirements.

What training and support was offered?

The project team developed easy-read information to support online involvement, explain what the project was about and what was expected. Facilitators in the participants homes (keyworkers) supported the individuals to access the internet so that they could go online.

What difference did public involvement make?

The programme is developing an online health educational programme for individuals with intellectual disability. Having their voice and perspective shape the content development adds richness that otherwise would not have been captured. Involving the end user ensures the material included is relevant and meaningful to their lives and promotes what is important to them. Overall making the programme more applicable and pertinent to the individuals learning.

What would you advise researchers about involvement?

Through creativity and imagination, involvement of individuals is possible, no matter who or no matter what obstacles you face. This promotes transparency of your research, improving its robustness and strength.  Having citizen engagement included in any project promotes the involvement of those most important in the process, instilling in them a sense of empowerment to lead development and ultimately, as in the case of this project, ensuring the voice of the individual was at the heart of the health educational programme.

Contact details: Dr Éilish Burke, Ussher Assistant Professor, School of Nursing & Midwifery, Trinity College Dublin