Edinburgh Napier University

  Background: Medicine non-adherence has a significant impact on quality of life, mortality, and morbidity. In 2003, the World Health Organisation stated that medicines optimization may have a greater impact on chronic disease management compared to any other scientific advancement (Paterson et al., 2020). People with intellectual/developmental disabilities (IDD) may be in greatest need of support (Sabaté, 2003), yet there is a paucity of research evidence on what medicines support strategies are effective in this population. The aim of the study was to gain an in-depth understanding of the barriers and facilitators that contribute to medicine adherence for people with IDD. The research team consisted of two citizen researchers with IDD who took part in each stage of the research process.
Methods: The study was grounded in knowledge translation and participatory research principles to ensure the meaningful involvement of people with IDD and their carers (Sabaté, 2003). Nine adults with IDD and 2 carers participated in the two-phase study. Phase 1 consisted of participants engaging in focus groups that were led by researchers with IDD and phase 2 invited participants from phase 1 to take part in simulated real-world scenarios with nursing students at the Clinical Skills Centre at Edinburgh Napier University. The scenarios were based on situations discussed during the focus groups about how medicine adherence can be improved for adults with IDD. This was an interactive and reflective process where feedback was discussed, and scenarios were adapted to include feedback from participants with IDD.
Findings: Three main themes emerged from the preliminary findings; understanding prescribed medication; accessible information and packaging; and taking medication at home.
Conclusion: The findings of the study will help to better inform healthcare professionals on how to better support adults with IDD to take their prescription medication to ensure better health outcomes.