Humanising the Healthcare Experiences of People with Learning Disabilities and/or Autism
Lead Research Organisation:
University of Sheffield
Department Name: iHuman
Abstract
Scandals, inquiries and reports into Winterbourne View, Whorlton Hall, Mendip House, Slade House and Yew Trees Hospital have revealed the tragic consequences of dehumanising care for adults with learning disabilities and/or autism. Previous research has evidenced a number of stubborn problems within healthcare; including ignorance, indifference and diagnostic overshadowing on the part of professionals (where underlying health conditions such as constipation or epilepsy are missed and symptoms incorrectly attributed to learning disability/autism). Uptake of annual health checks, screening and follow up appointments are low and there is evidence of inappropriate prescriptions of psychotropic drugs. Despite previous attempts to promote empowering, person-centred and holistic care practices, many people with learning disabilities and/or autism are dehumanised by healthcare.
Prior to the pandemic, people with learning disabilities and/or autism already died 20-30 years earlier than their non-disabled counterparts. By Autumn 2020, people so-labelled were six times more likely to die from the virus than the rest of the population. The human worth and value of people with learning disabilities and/or autism have been devalued by controversies associated with the Clinical Frailty Scale, healthcare rationing and the blanket deployment of 'Do Not Resuscitate' orders. The failure to prioritise care homes, a lack of access to PPE and testing, and changing vaccination guidance, risk rendering people with learning disabilities and/or autism as expendable and disposable.
We believe that a new approach is needed; especially now, as we plan for recovery and renewal in a post-pandemic world. Therefore, we will develop the concept of 'Humanising Healthcare'; identifying principles and practices of empathy, dignity, compassion, kindness and recognition. We will investigate the cultures, conventions, systems, relationships and practices of a neurology service and a learning disability service. This will allow us to identify the ways in which these two distinct services and their practitioners deliver humanising healthcare.
Our team of researchers with learning disabilities and/or autism, medical clinicians and social scientists have been meeting over the last 18 months to co-create this research project. 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 30 people with learning disabilities and/or autism through 300 days of observational research of a neurology service and a learning disability service and 120 narrative interviews with professionals, 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 and/or autism through festivals, a digital exhibition, a social media campaign and podcast series
Prior to the pandemic, people with learning disabilities and/or autism already died 20-30 years earlier than their non-disabled counterparts. By Autumn 2020, people so-labelled were six times more likely to die from the virus than the rest of the population. The human worth and value of people with learning disabilities and/or autism have been devalued by controversies associated with the Clinical Frailty Scale, healthcare rationing and the blanket deployment of 'Do Not Resuscitate' orders. The failure to prioritise care homes, a lack of access to PPE and testing, and changing vaccination guidance, risk rendering people with learning disabilities and/or autism as expendable and disposable.
We believe that a new approach is needed; especially now, as we plan for recovery and renewal in a post-pandemic world. Therefore, we will develop the concept of 'Humanising Healthcare'; identifying principles and practices of empathy, dignity, compassion, kindness and recognition. We will investigate the cultures, conventions, systems, relationships and practices of a neurology service and a learning disability service. This will allow us to identify the ways in which these two distinct services and their practitioners deliver humanising healthcare.
Our team of researchers with learning disabilities and/or autism, medical clinicians and social scientists have been meeting over the last 18 months to co-create this research project. 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 30 people with learning disabilities and/or autism through 300 days of observational research of a neurology service and a learning disability service and 120 narrative interviews with professionals, 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 and/or autism through festivals, a digital exhibition, a social media campaign and podcast series
Publications
Bottomley M
(2024)
Co-producing ethics guidelines together with people with learning disabilities
in British Journal of Learning Disabilities
Watkins LV
(2022)
A review of the pharmacotherapeutic considerations for managing epilepsy in people with autism.
in Expert opinion on pharmacotherapy
Milne-Ives M
(2022)
Humanizing Health and Social Care Support for People With Intellectual and Developmental Disabilities: Protocol for a Scoping Review.
in JMIR research protocols
Goodley D
(2022)
Affect, dis/ability and the pandemic
in Sociology of Health & Illness
Goodley D
(2023)
Being human as praxis: for people with learning disabilities
in Subjectivity
Description | Disability Matters |
Amount | £2,977,154 (GBP) |
Funding ID | 226705/z/22/z |
Organisation | Wellcome Trust |
Sector | Charity/Non Profit |
Country | United Kingdom |
Start | 09/2023 |
End | 08/2029 |
Title | Co-producing Open Research |
Description | An online seminar presented by Dan Goodley and members of Speakup Self-advocacy to explain the merits of co-producing research |
Type Of Material | Improvements to research infrastructure |
Year Produced | 2023 |
Provided To Others? | Yes |
Impact | Raised profile as co-production of a methodology for creating Open Research. Downloaded 35 times on 13.3.23 |
URL | https://figshare.shef.ac.uk/articles/media/Open_Research_Conversation_Participants_as_Co-investigato... |
Description | Project website |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Other audiences |
Results and Impact | A project website deploying text, images, film and cartoons to accessible share the key findings of the project |
Year(s) Of Engagement Activity | 2022 |
URL | https://sites.google.com/sheffield.ac.uk/esrchumanisinghealthcare/home |
Description | Sheffield Robotics showcase |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Sheffield Robotics (University of Sheffield), December 2022 - Dr Lauren White and Harry Gordon showcased our project at the Sheffield Robotics Network. Our presentation was centred on showcasing the importance of co-production methods to those in the Sheffield Robotics Community. In our presentation, we talked through all of our co-produced findings and research activities and highlighted how our student co-researchers have become makers of technology through working with maker{futures} and methods of co-production. We presented alongside fellow projects in the TAS Hub Network (Dr Dave Cameron on his project 'Imagining Robotic Care' and Prof Sanja Dogramadzi on her project 'TAS Node in Resilience Project') and the presentations were followed by networking activities. |
Year(s) Of Engagement Activity | 2022 |