Humanising the Healthcare Experiences of People with Learning Disabilities and/or Autism: Qualitative Data From Interviews and Ethnographic Data and Research Materials, 2022-2025

Goodley, Daniel (2025). Humanising the Healthcare Experiences of People with Learning Disabilities and/or Autism: Qualitative Data From Interviews and Ethnographic Data and Research Materials, 2022-2025. [Data Collection]. Colchester, Essex: UK Data Service. 10.5255/UKDA-SN-857910

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

Data description (abstract)

'Humanising the Healthcare Experiences of People with Learning Disabilities and/or Autism' - Humanising Healthcare for short - is a project that brings together researchers with learning disabilities, clinical researchers and social scientists to investigate and identify forms of compassionate and affirmative healthcare that are experienced by people with learning disabilities. Our dataset includes accessible project proposals, information sheets and consent forms; qualitative data including coded interview transcripts and participant observations fieldnotes of patients with learning disabilities; coded interviews between self-advocates with learning disabilities and entries to an online exhibition which showcases the innovative advocacy, consultancy, training, advice and innovation produced by our non-academic advocacy-based organisation partners (who are researchers in their own right): Barod, Speakup Self-advocacy, Sheffield Voices and Sunderland People First. Our team has worked together to prepare this data set and we insist that anyone using or accessing our dataset should read our 'Humanising Open Data’ documents - which works as a background document setting out how we critically, conceptually and pragmatically engage with the idea and practice of Open Data.

Our project - Humanising Healthcare - posits a new approach; the development of the concept of 'Humanising Healthcare', where we identify principles and practices of empathy, dignity, compassion, kindness and recognition. Our research team sought to investigate the cultures, conventions, systems, relationships and practices of a neurology service and a learning disability service. Our thinking was that this focus on specific services would allow us to identify the ways in which these two distinct services and their practitioners deliver humanising healthcare.

The project started in August 2022 and run until August 2025 (with a no cost extension until December 2025). Throughout the time of the project we have provided regular updates on our work through our project website:
https://sites.google.com/sheffield.ac.uk/esrchumanisinghealthcare/home

The uploaded document 'readme Goodley Humanising Healthcare 2025' describes the data we have uploaded relating to the following phases of research detailed below. We are also asking any users of our data to read this document 'Phase 0 Thinking of using this dataset? Read the team’s approach to Open Data that involves people with learning disabilities': which explains our rationale, philosophy and approach to the depositing of some data while retaining other data. We consider both of these documents compulsory reading for any user of our data.

Phase 0 - refers to the over-arching documents relating to the overall project including research proposal and the 'Humanising Open Data' document which explains our co-produced approach to Open Data.

From then on the data is organised according to research fieldwork which has five key phases to it.

Phase 1 - qualitative research fieldwork - has focused on two NHS healthcare services - a neurology service and a learning disability service - and to date, two social science researchers (Dr Nikita Hayden and Dr Bojana Daw Srdanovic) have carried out the following qualitative fieldwork: We recruited 8 (neurology service) and 6 (Learning disability service) people with learning disabilities. One participant with learning disabilities (neurology) passed away during the time of our project, while another person so-labelled and their family decided to withdraw from the study (neurology): thus confirming that our ongoing informed consent and withdrawal processes were responsive. One participant with learning disabilities (learning disability service) did not engage with the study after recruitment.

51 ethnographic encounters with 12 people with learning disabilities were carried out - across the two NHS sites - encompassing face-to-face and online observations of consultants’ appointments, cancelled appointments, multidisciplinary team meetings, clinical meetings, checkups and open clinical days.

13 semi-structured interviews were undertaken with nine people with learning disabilities accessing the two NHS services. Although we did employ inclusive interview methods, a further four interviews were completed with additional patient-participants with learning disabilities, but the methods were not sufficiently inclusive for the interviews to contribute data for this study.

28 semi-structured interviews with significant others of the people with learning disabilities (including parents, siblings, trusted friends and trusted professionals). One of our significant others passed away during the time of the study.

Running in parallel with this fieldwork, we have worked with researchers with learning disabilities to help us lead, manage and direct the research project.

Phase 2 - relates to work of The Executive Team - which prioritises the expertise and input of those members with learning disabilities who are paid to work with us through the consultancy fees of their organisations; Speakup Self-advocacy Rotherham; Sheffield Voices; Sunderland People First and Barod. These members of The Executive are researchers in their own right - holding the social science and clinical researchers to account - and are involved in all stages of the project from writing the successful research grant; submission of ethics; assessment of methods and fieldwork plans; analysis of emerging data and collaborative writing of different outputs and dissemination. The Executive has met online and face-to-face 13 times over the course of the two year project. Researchers with learning disabilities are not just involved in the process of doing research; they are a central part of The Executive that is responsible for the curation of Open Data. We know that research on the lives of people with learning disabilities is often undertaken by researchers without learning disabilities. In contrast, we work in collaboration with researchers with learning disabilities towards a model of research and a research reality that they support.

In addition to the work of The Executive, a further element of empirical work has been carried out which foregrounds researchers with learning disabilities as the generators of their own knowledge about humanising healthcare.

Phase 3 - self-advocates interviewing self-advocates - had two elements to it. The first invited Speak Up to group interview Sheffield Voices; Sunderland People First interviewed Speak Up; Sheffield Voices interviewed Barod; Barod interviewed Sunderland People First. This sharing of peer generated knowledge has been invaluable and has fuelled our analysis. Four interviews were completed. The second element to this phase involved a number of one-to-one self-advocates interviewing another about their experiences of the NHS; with an emphasis on sharing stories about when healthcare appears to be positive and affirmative. 12 interviews were completed.

As a team of researchers from advocacy-based organisations, universities and clinical settings, we are committed to disseminating through Phase 4: Emergent findings to people with learning disabilities, self-advocacy groups and their supporters and families; healthcare practitioners, service providers and policy makers; social science, humanities and clinical researchers. We use different formats including online presentations, Easy Read publications, illustrations, podcasts and journal articles. Indeed, in our Researchfish.com submission (itself an example of Open Research), we write that our early findings at this stage of the research include:

A review of the literature where we identified that, compared to the general population, people with learning disabilities die on average younger, are more likely to die from avoidable deaths, and are at a higher risk of a range of mental and physical health conditions. This evidence demands that we identify, share and inculcate forms of humanising healthcare.

+ Researchers with learning disabilities can and should be involved with all stages of research from conception, to grant submission, to ethics, the design of methods and methodology, analysis of data and the dissemination of findings.
+ People with learning disabilities’ engagement with self-advocacy groups provides essential support and peer advocacy during the post-pandemic period of society; a time where their human value, worth and human rights have been seriously undermined.
+ The healthcare of people with learning disabilities cannot be divorced from a broader understanding of society's continued dehumanisation and devaluation of people so-labelled which risks rendering them fragile, anxious and separated from their local communities.
+ People with learning disabilities and their involvement with self-advocacy creates new kinds of empathic relationships, forms of support, access to knowledge and communities that not only sustain their lives and aspirations but also create new kinds of knowledge about humanising healthcare.
+ While it is important to understand healthcare practices, services and professional interventions, self-advocacy groups have the potential to also raise the health and well-being of people with learning disabilities.
+ Examples of humanising healthcare on the part of clinical practitioners - from consultants, nurses to professional services - are associated with compassion, empathy affirmation and care that assume patients with learning disabilities are human beings first.
+ We need to be consistently mindful of the dangers of the ideology of diagnostic overshadowing: where the assumed learning disability of a person over-shadows a more thorough understanding of the health and well-being as a human being.
+m Researching humanising healthcare raises important questions about epistemology (how we understand people with learning disabilities); methodology (how we research with and for people with learning disabilities) and ontology (how we conceptualise the very nature of humanisation and healthcare).
+Empathic, compassionate and humanising healthcare can only be understood in the context of contemporary cultural logics which continue to construe people with learning disabilities as less than human.
+ A ‘Reclaiming the Human in Healthcare Manifesto’ is required to convey the key tenets of compassionate healthcare for people with learning disabilities: one that we write in collaboration with people with learning disabilities.
Finally, our project has curated Phase 5: An online Exhibition. This space is an online celebration of the advocacy, consultancy, training, advice and innovation produced by Barod, Speakup Self-advocacy, Sheffield Voices and Sunderland People First that seeks to promote the humanisation of people with learning disabilities. This work engages with healthcare services and the NHS but also the broader social context which includes social care, education and community living. Our job as researchers is to act as conduits: to share the excellence of the work of our research partners.

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