Humanising Healthcare
Research type
Research Study
Full title
Humanising the Healthcare Experiences of People with Learning Disabilities (including autistic people who also have learning disabilities)
IRAS ID
317389
Contact name
Dan Goodley
Contact email
Sponsor organisation
University of Sheffield
Duration of Study in the UK
2 years, 11 months, 31 days
Research summary
Despite many attempts to promote empowering, person-centred and holistic care practices, many people with learning disabilities are dehumanised by healthcare. We believe that a new approach is needed. We will develop the concept of 'Humanising Healthcare’. Between September 2022 and August 2025 we will investigate the cultures, conventions, systems, relationships and practices of two distinct NHS specialist services. This will allow us to identify the ways in which these two services and their practitioners deliver humanising healthcare.
First, we will write a literature review that captures the key priorities and determinants of health for people with learning disabilities and/autism. Second, we will identify ideas and concepts to understand humanising healthcare by reading medical humanities, disability studies, posthumanities and disability activism literature and discuss the merits of these ideas during co-production workshops. Third, we will implement an investigation of the healthcare experiences of people with learning disabilities and/or autism through observational research of a neurology service and a learning disability service and narrative interviews with people with learning disabilities and their significant others including patients and family members. Fourth, we will analyse the observations and interviews, informed by co-production workshops and our theoretical resources. Fifth, we will identify healthcare practices - including referrals, assessments, diagnoses, clinical judgements, investigations, treatments, service management, commissioning, medical training and continued professional development - that are under-pinned by the principles of empathy, compassion, dignity, kindness and recognition. We will share these through a website, manifesto, healthcare toolkit, practitioner training materials, journal articles, conference presentations and co-production research resources, supported by an experts-by-experience advisory board and clinical and practitioner expert group. Finally, we will increase public awareness of the healthcare realities and aspirations of people with learning disabilities through festivals, a digital exhibition, a social media campaign and podcast series.
REC name
Yorkshire & The Humber - Leeds West Research Ethics Committee
REC reference
22/YH/0228
Date of REC Opinion
24 Oct 2022
REC opinion
Favourable Opinion