Exploring sleep and vision impairment through a Patient and Public Involvement and Engagement (PPIE) lens: insights from multiple stakeholders

Background Patient and Public Involvement and Engagement (PPIE) enhances the relevance and impact of health research. Our multidisciplinary study integrated PPIE to co-design research on sleep disorders in individuals with vision impairment (VI). While sleep disruption is well recognised in those with no light perception (NLP), sleep issues in individuals with less severe VI remain underexplored. Methods Individuals with VI, caregivers, charities, academics, and healthcare professionals were engaged to shape the study design. Contributors, recruited through VI support groups, identified sleep as a priority and helped refine the research questions, methodology, and study materials. An accessible online Insomnia Severity Index survey, pilot-tested by the group, assessed sleep quality and impact on daily functioning. Focus groups were held online and in person, with detailed notes analysed thematically and validated by contributors. Survey data were analysed descriptively. Results Thematic analysis identified four key themes: (1) sleep as a major concern, (2) the impact on families, (3) varied experiences with melatonin, and (4) interest in non-pharmacological interventions. Contributors emphasised the need for inclusive and adapted digital and device-based solutions. Conclusions This PPIE-led study highlights the need for tailored, non-pharmacological sleep interventions for people with VI, including those with less severe VI. Findings reinforce the importance of co-producing accessible digital solutions to ensure equitable care. Ongoing collaboration with stakeholders will be essential to developing and evaluating future sleep interventions aimed at improving quality of life in this population.