IAANMP: More updates from advanced practice across Ireland

Healthy living for life: Enhancing equitable access to cancer prevention information and screening for adults with intellectual disabilities in Ireland

As a candidate (c)ANP in Intellectual Disability (ID) Health and Wellbeing, my role centres around disease prevention, early intervention, health maintenance, and access to equitable care. A recent milestone in this journey was the launch of the Marie Keating Foundation’s ‘Healthy Living for Life’ initiative, a landmark cancer education project developed in collaboration with people with an ID, Cavan Monaghan HSE disability services, and health action groups throughout Ireland.

This project demonstrates the transformative power of leadership, advocacy, and inclusive practice. It is a leading example of how health literacy can be co-designed and co-produced to enable people with ID to engage with cancer prevention and screening.

ANPs are ideally placed to lead these conversations, embedding health promotion in routine care, ‘making every contact count’, championing reasonable adjustments, and educating colleagues and carers. By leading on initiatives like ‘Healthy living for life’, ANPs help shape a system that sees, hears, and includes people with an ID.

The new accessible resources launched during the Marie Keating Foundation’s Adults with ID Celebration Day in June 2025. This was more than an event; it was a national statement of inclusion. More than 100 participants from health action groups across Ireland came together to showcase the yearlong work of co-developing a cancer prevention booklet and infographic that is accessible, empowering, and evidence based.

Through professional collaboration, we bridged a critical gap. As an ID cANP, I played a key leadership role working with the Marie Keating Foundation on the project. The ‘Healthy living for life’ project originated from a request by members of the MISE group’s ‘Keeping well Society’, a group I established while developing my role, and who asked for a session on cancer prevention. We found limited accessible information, and when the group saw the Marie Keating Foundation’s ‘Your health: Your choice’ materials, they asked if it could be made easier to understand.

I contacted the Foundation, who agreed to collaborate. With funding from Gilead Sciences and support from the Marie Keating Foundation’s health promotion nurses, we expanded the project to include six other health action groups across Ireland. Together, we co-produced accessible, user-friendly, cancer prevention resources shaped by the people they were designed for.

Health literacy is about making sure everyone can understand and use health information in a way that helps them live well. This project brings that to life. It shows the power of inclusion, advocacy, and co-production, where the people with lived experience are involved every step of the way. We have seen how ‘nothing about us without us’ isn’t just a slogan – it is the foundation for change.

My role involved supporting content development, staff training, and community engagement to ensure that every voice was heard. The Marie Keating Foundation nurses, who have received focused training in effective communication and accessible information sharing for adults with IDs, will be instrumental in scaling this work nationally by training others.

This initiative is not just about materials, it is about mindset. It shows what is possible when healthcare is built around inclusion, partnership, and professional leadership. It is also a clear call to action – we must all advocate for and embed health literacy in every interaction.

As ANPs in ID nursing, our leadership matters. Whether it is shaping policy, informing practice, or making every contact count, our role is to ensure that people with ID are never an afterthought in cancer prevention.

Health literacy is about making sure everyone can understand and use health information in a way that helps them live well.

Reflect on practice:

Reflect on your last patient interaction involving a person with an intellectual disability:

• How did you include the person with ID and their supporters in shared decisions?
• What approaches helped the individual express their needs, concerns, or preferences?
• Could your communication or materials be made more accessible or supportive?
• What changes would improve confidence, understanding, and advocacy for both individuals
  and carers?

Points to note in practice:

• Involve individuals with ID and those who support them when designing or adapting health information.
• Enable people with ID to understand their health and express what matters to them.
• Support autonomy by embedding shared decision-making into every healthcare interaction.
• Collaborate with carers, families, and support staff to ensure consistent, person-centred health messaging.
• Promote inclusive care environments and seek practical ways to make services more accessible.
• Make communication support and health literacy a routine, not exceptional, part of care delivery.