How can the experience of hospital outpatient departments for Neurofibromatosis (NF) patients with sensory challenges be improved?

Background This project aims to co-design an intervention to improve outpatient departments for people with sensory impairments and differences (sensory challenges). 24% of the population in the UK had a disability in 2021/226. This includes 9% with hearing and 9% with visual impairments6 and over four million people in the UK will experience visual impairment by 20507. People with Learning Disabilities and Autistic adults (a group likely to experience sensory differences) experience barriers to healthcare including unsuitable and inaccessible appointment locations8. People with nerve tumour predisposition conditions such as neurofibromatosis (NF) have increased prevalence of visual, hearing, learning and behavioural differences11,20-23. There were 124.5 million NHS outpatient appointments between 2021/229. My systematic review10 found studies exploring hospital design, but few considering outpatient departments and fewer still focused on people with sensory challenges. Inclusive Design Principles suggest far reaching benefits from inclusive healthcare spaces24. Research question How can the experience of hospital outpatient departments be improved for NF patients with sensory challenges? Aims To explore experience and co-design an intervention improving the experience of outpatient departments for people with NF sensory challenges. Methods Underpinned by a constructionist philosophy and the development stage of the MRC Framework for Complex Interventions, this study uses Experience Based Co-Design (EBCD): Months 0-9 Project set-up. Months 4-15 1: Ethnographic data collection (shadowing, static observation, interviews) of staff, patients and carers in outpatient waiting rooms: - Ethnographic transcripts translated from field notes analysed using Reflexive Thematic Analysis (RTA). Months 10-18 2a: Staff focus groups using topic guides and arts-based tools to explore perceptions of patient barriers: - Audio data analysed using RTA. Months 17-27 2b: Recorded walking-interviews with patients and carers highlighting barriers and facilitators: - Audio and video data analysed using RTA; videos edited and interwoven into one film presenting common themes. Months 27-32 3: Staff, patient and carer workshops using prompts/topic guide and arts-based tools to explore collective responses to videos (phase 2b) and establish improvement priorities: Audio data analysed using Reflexive Content Analysis (RCA). Months 33-41 4: Working groups of patients, carers and staff co-designing and developing an intervention: - Audio data analysed using RCA. Months 38-45 Review, thanking participants; dissemination; preparing for intervention testing via a feasibility study. Anticipated impact/dissemination A dissemination strategy will develop in response to stakeholder conversations. Dissemination may use social media/blogs, lay groups, the Science Gallery London and other community collaborations to facilitate creative and accessible information sharing. Reports will be published and shared with researchers, patients, carers, and other stakeholders. It is unknown what the outputs will be as the intervention will be co-designed through the project. It may improve attendance and treatment adherence, reduce anxiety, improve patient and staff satisfaction and improve therapeutic relationships by: Development of a toolkit (identifying context-specific local scale interventions). Staff educational tools. Evidence and experience based design guidance. Measures of impact may include patient and staff satisfaction scores and 'did not attend' rates. Demographic data including equality, diversity and inclusion (EDI) characteristics will contextualise the data and ensure inclusivity.