A health promotion initiative to support healthy diet and lifestyle decision-making by people with intellectual disability.

Brief overview of the project

People with intellectual disability have a right to be involved in and make decisions that affect them. Don’t Mention the Diet! is a health promotion initiative that was co-produced with people with intellectual disability. Evidence suggests this group experience challenges related to health literacy and health promotion materials can be inaccessible. This project resulted in the design of an eight-month module with a double helix structure intertwining educational and personal development elements. It demonstrates how active involvement of people with intellectual disability in the design and provision of appropriate educational supports can assist them to make informed decisions about their diets and lifestyle.

Description of Public and Patient Involvement (PPI) in this project  

A collaborative patient and public involvement (PPI) approach was adopted to integrate the knowledge and experience of the team members in designing and delivering a health promotion module that educated and empowered students around lifestyle decision making. In this initiative, we used the term co-designer to reflect the active involvement of the three team members with intellectual disability.

Who is/was involved?

The team included three adults with mild or moderate intellectual disability and five intellectual disability nurses, four of whom work in nurse education and one who works as a Clinical Nurse Specialist in communication. 

Challenges and/or solutions

The co-designers communicate in different ways. Some speak and some sign. Therefore, we were cognisant throughout the project that the methods of communication we used were inclusive of all team members. This can present as a challenge but with imagination and willingness to learn, it became a way of working and in time was no longer a challenge.

What difference did public involvement make?

The inclusion of co-designers in the team was key to ensuring successful module design and delivery. Listening to the self-identified health education needs and responding collaboratively resulted in an educational initiative that held relevance and met student’s needs.

What would you advise researchers about involvement?

We recommend the inclusion of PPI researchers so their voices are heard and their experiential knowledge informs the development of knowledge that effects them. It strengthens and ensures the relevance of the study and its findings to the community they represent.

Contact information and related links

• Dr. Anne-Marie Martin
• Lecturer and Programme Leader (BSc Nursing-Intellectual Disability)
• Room 1.15, School of Nursing and Midwifery, University College Cork, T12 AK54
• +353 (0) 21 490 1451
• a.martin@ucc.ie 

Article: Martin, A. M., Divane, S., Twomey, S., O’Neill, L., McCarthy, J., Egan, C., Dalton, C. and Caples, M. (2021), Don’t Mention the Diet! A health promotion initiative to support healthy diet and lifestyle decision-making by people with intellectual disability. British Journal of Learning Disabilities (early online) https://doi.org/10.1111/bld.12382