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
Dan Goodley
(2023)
Disability and the medical posthumanities
in interconnections: journal of posthumanism
Daw Srdanovic B
(2024)
Failing ethnographies as post-qualitative possibilities: reflections from critical posthumanities and critical disability studies
in Qualitative Research in Psychology
Goodley
(2024)
Disability Studies: An Interdisciplinary Introduction
Goodley D
(2023)
Affect, dis/ability and the pandemic.
in Sociology of health & illness
Goodley D
(2024)
Depathologising the university
in Pedagogy, Culture & Society
Goodley D
(2023)
Being human as praxis: for people with learning disabilities
in Subjectivity
Goodley Dan
(2024)
Disability Studies: An Interdisciplinary Introduction
Goodley Dan
(2024)
Disability Studies: An Interdisciplinary Introduction
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
Watkins LV
(2022)
A review of the pharmacotherapeutic considerations for managing epilepsy in people with autism.
in Expert opinion on pharmacotherapy
| Description | The Humanising Healthcare team brings together a collaboration of 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 research 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. 41 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 10 interviews undertaken with people with learning disabilities accessing the two NHS services. 23 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. We have planned follow up meetings with all people with learning disabilities and their families in Spring 2025; where we will share key findings of the research to honour their contributions and accounts. Running in parallel with this fieldwork, we have worked with researchers with learning disabilities to help us lead, manage and direct the research project. The Executive Team 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 11 times over the course of the project. 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. This phase - self-advocates interviewing self-advocates - invited Speak Up to 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. As a team of researchers from advocacy-based organisations, universities and clinical settings, we are committed to disseminating our 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. Our early key findings at this stage of the research include: 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 diagnostic overshadowing: where the learning disability of a patient over-shadows a more thorough understanding of the health and well-being as a human being. 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. |
| Exploitation Route | The findings of this research and their potential impact are described in our Impact Narrative section. It is worth flagging here that, as detailed in our Researchfish submission, the co-production and participatory elements of this work have fed into and informed the writing of two Wellcome Trust grants that have been successfully funded. |
| Sectors | Education Healthcare Government Democracy and Justice |
| URL | https://sites.google.com/sheffield.ac.uk/esrchumanisinghealthcare/writing-and-dissemination |
| Description | Our narrative impact is a work in progress that reflects our commitment, as a team of researchers from advocacy-based organisations, universities and clinical settings, to disseminating our 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. We will work on five pathways to impact, including: Informing researchers - through sharing our research findings relating to the co-production of ethics applications with researchers with learning disabilities with researchers in universities through a journal article, online presentation and Easy Read version. Addressing practitioners, families and self-advocates - Writing of an Plain English / Photosymbols 'Reclaiming the Human in Healthcare Manifesto'' to be shared with self-advocacy groups, parent organisations and practitioner groups (including England and Wales Clinical Commissioning Groups, NHS Trusts, Learning Disability Mortality Review and NHS Learning Disability and Autism Programmes, Welsh Government Learning Disability Ministerial Advisory Group, Learning Disability Ministerial Advisory Group, Healthcare Inspectorate Wales and Care Inspectorate Wales, Royal Colleges/Societies (Psychiatrists, GPs, Medicine), NHS/Public Health England/Cymru, NIHR, NICE, Care Quality Commission, National LD Senate. We will share this across social media contexts. Informing medical education and pedagogy - through a the deliversty of a number of teaching sessions for medical students in three universities. Address the health, science and research sectors - through a commitment to creating of anti-ableist research and university cultures - through the involvement of two of our self-advocacy partners - Sheffield Voices and Speakup Self-advocacy - in the work of the Wellcome Anti-Ableist Research Culture project (https://www.sheffield.ac.uk/ihuman/waarc). Raising public awareness of the research and innovation capacities of people with learning disabilities through a social media campaign: https://www.sheffield.ac.uk/ihuman/news/be-cancer-aware-disability-co-production-action |
| First Year Of Impact | 2023 |
| Sector | Education,Healthcare |
| Impact Types | Cultural Societal |
| Description | Developing a capital model of the lives of disabled young people |
| Amount | £25,000 (GBP) |
| Organisation | Scope |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 01/2020 |
| End | 06/2021 |
| 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 | 08/2023 |
| End | 08/2029 |
| Description | ESRC Impact Acceleration Accounts funding for Impact website, working title www.humanstoo.com - a web resource for people with learning disabilities and their supporters |
| Amount | £11,000 (GBP) |
| Organisation | University of Sheffield |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 08/2015 |
| End | 09/2016 |
| Description | Further Funding: Economic and Social Research Council Festival of Social Science, 2014 |
| Amount | £1,008 (GBP) |
| Organisation | Economic and Social Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 11/2014 |
| End | 11/2014 |
| Description | Social Sciences and Humanities Research Council Network Grant |
| Amount | $24,795 (CAD) |
| Organisation | Government of Canada |
| Department | SSHRC - Social Sciences and Humanities Research Council |
| Sector | Public |
| Country | Canada |
| Start | 06/2015 |
| End | 10/2015 |
| Description | WAARC: Wellcome Anti-Ableist Research Culture: Wellcome Institutional Funding for Research Culture Award |
| Amount | £1,000,000 (GBP) |
| Funding ID | 228084/Z/23/Z |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 04/2024 |
| End | 03/2026 |
| Description | WUN Mobility funding for Goodley to disseminate findings with colleagues University of Sydney |
| Amount | £1,800 (GBP) |
| Organisation | Worldwide Universities Network |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 06/2015 |
| End | 08/2015 |
| 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... |
| Title | Participatory Ethics - Good Practice Guidelines. |
| Description | This document details 10 guidelines to make ethics applications more accessible to researchers with learning disabilities. |
| Type Of Material | Improvements to research infrastructure |
| Year Produced | 2023 |
| Provided To Others? | Yes |
| Impact | This accessible guide, combining easy read and images, outlines 10 stages to co-producing ethics applications to the Health Research Authority, working with researchers with learning disabilities. The tool is regularly accessed online. |
| URL | https://sites.google.com/sheffield.ac.uk/esrchumanisinghealthcare/co-producing-ethics |
| Description | 'Be Cancer Aware' as Disability Co-Production in Action |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | 'Be Cancer Aware' as Disability Co-Production in Action Disability Matters teamed up with Humanising Healthcare to capture effective disability co-production on film Be Cancer Aware Film Be Cancer Aware Film Disability Matters and Humanising Healthcare projects launch the film Be Cancer Aware, in collaboration with Sunderland People First. At one of our Disability Matters Online Symposia events last year, our audience asked us a question. How can we highlight the research and scholarship being done by those in our community with learning disabilities? How can we work to ensure their research expertise is represented? To explore approaching this question the Disability Matters team teamed up with colleagues on the Humanising Healthcare project. Our discussions brought us to think of film as a means of capturing the research of one of our research partners. We also engaged with a film-maker. The outcome was Be Cancer Aware, a film showcasing the work being done by Sunderland People First, who have over 20 years of experience championing the rights of people with a learning disability and autistic people; and carrying out research and innovation with a host of external stakeholders. Be Cancer Aware is a training session created and facilitated by people with learning disabilities. The aim is to help people with learning disabilities, as well as those who support them, to understand the signs of cancer, the screening process, and where to go for support and advice. The film captures the difficulties in navigating inaccessible healthcare, and how Sunderland People First draw on their own personal experience and research to inform the training. Their work is an example of effective co-production research and innovation in action. As a programme, we wish to explore ways of showcasing the amazing work and discussion occurring in all spheres of the disability community. Thank you to Sunderland People First, Humanising Healthcare and our film-maker Joanna Tobbell. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.sheffield.ac.uk/ihuman/news/be-cancer-aware-disability-co-production-action |
| Description | 2nd International Conference on Disability Studies: Disability Matters: Critically Examining Disablism and Ableism |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Postgraduate students |
| Results and Impact | 2nd International Conference on Disability Studies: Disability Matters: Critically Examining Disablism and Ableism A collaboration between the Aristotle University of Thessaloniki, Faculty of Education, Department of Primary Education, School of Education, University of Sheffield, and iHuman, University of Sheffield Poster reads:2nd international conference on disability studies. Disability Matters, Critically examining disablism and ableism. 19-21 April. The Critical Disability Studies team based on iHuman of the University of Sheffield had the privilege to co-organise and present their work in the 2nd International Conference on Disability Studies, with the title "Disability Matters: Critically Examining Disablism and Ableism". Specifically, eleven members took part: Rebecca Lawthom, Katherine Runswick-Cole, Dan Goodley, Kirsty Liddiard, Harriet Cameron, Rhea Halsey, Lauren White, Ryan Bramley, Nikita Hayden, Bojana Daw Srdanovic and Antonios Ktenidis. The conference was organised in collaboration with the Aristotle University of Thessaloniki, Faculty of Education, where it also took place. Special thanks to Professor Yiota Karagianni and Christina Lazaridou for the exceptional collaboration! More information about the conference, including the programme and abstracts of the papers, can be found here. What follows is a series of quotes from the Critical Disability Studies team regarding their experience of the conference: Visiting Thessaloniki and Aristotle University as a community of disability scholars felt like an act of co-production. Sharing knowledges and practices in person felt like a real act of scholar activism. We know that financial and economic pressures mean Greek disability activists and scholars cannot always visit so sharing this time together felt as if we were building community (bell Hooks) . Antonios as a boundary spanner worked his magic as aligned to all of our work, we had to make access work and work access. Interesting to spend time with students who were prepared to give up time to actively participate at the weekend. (Rebecca Lawthom) Yiota and colleagues pulled off a rare feat: in bringing together disabled activists and disability researchers into a space where dialogue and sharing occurred across different languages and through different forms of translation. (Dan Goodley) What a wonderful space to come together and share personal perspectives and political insights. It was powerful to see intersections of theory, practice and political agendas across languages and contexts. Not to forget the building of community! (Lauren White) What a joy and privilege it was to be part of this transdisciplinary conversation! As one of the speakers (alongside Katherine Runswick-Cole) I felt that the audience, with their whole hearts, critical ears, nodding and headshaking, hand-waving and clapping, and with their hopeful but challenging questions, brought our words to life. The experience gives us energy to keep going! (Harriet Cameron) It was an absolute privilege to spend time in Thessaloniki with disability studies academics and disabled activists. Their stories of discrimination and hate crime were shocking, but sadly familiar to those of us visiting from the UK, where we have our own stories to tell. The conference was a timely reminder of the importance of collectivity and activism with and by marginalised people - wherever they are in the world. (Katherine Runswick-Cole) I thoroughly enjoyed this experience, what an honour to have been involved. Yiota and Antonios helped create a space to which we could gather together and share. I particularly liked hearing from many Greek activists and artists, such as Antonis Rellas, showing that despite our differences, many aspects of the disabled experience are universal. Long may these dispolitical spaces thrive! (Rhea Halsey) What a unique moment it is when two almae matres (Aristotle University of Thessaloniki and University of Sheffield) come together for such a meaningful purpose: the 2nd International Conference on Disability Studies, Disability Matters: Critically Examining Disablism and Ableism. Among the highlights for me were the community that was built, the interactions inside and outside the 'classroom', the solidarity, the dis/political love (to quote Martina Smith), the learning and sharing that took place, the care, the connections, the food, the fun and so much more. A great reminder of the difference communities can make! (Antonios Ktenidis) Efharisto, Aristotle University of Thessaloniki! In the face of all the discrimination Disabled people face - from the cruel political rhetoric surrounding Personal Independence Payments in the UK, to the dehumanising cuts to funding for Disabled people in Greece - how moving it was to be sat in a room with dozens of academics, activists, friends and family, who have all, quite frankly, had enough of how things are. There are too many amazing experiences to mention, but one that really stood out for me was the presentation by the Emancipation Movement for the Disabled, whose mantra, "Zero Tolerance", resonates across national borders. The photos of the protest these brilliant activists held outside the Greek Parliament on December 3rd 2012 - the International Day of Disabled People - will stay in my memory for a very long time. Thanks to Thessaloniki, thanks to Antonios (University of Sheffield) and Yiota (Aristotle University of Thessaloniki), and thank-you to all of these brilliant Critical Disability Studies colleagues who I continue to learn from. (Ryan Bramley) I very much appreciated the opportunity to be a part of this event and to visit this terrific city. I was struck by the warmth, generosity and kindness of the people that we met in Thessaloniki and I am very grateful to Antonios and Yiota for inviting us to speak and to learn more about the incredible disability activism happening in Greece. I hope that there will be more opportunities for us to learn from you in the future. (Nikita Hayden) It was such an utter joy to visit Thessaloniki. Listening to talks given by Greek Disability activists and scholars truly reinforced the idea that no struggle is possible without care. Hearing about the connections and mutual aid across different activist groups in the city has left a lasting impression on me. Another thing: the sense that the Aristotle University is a vital and vibrant location of learning and debate. I absolutely loved that the conference was attended by students, as well as activists, artists and academics. Thank you to Antonios, Yiota and the many others who made us feel so welcome. (Bojana Daw Srdanovic) Robot reading books iHuman How we understand being 'human' differs between disciplines and has changed radically over time. We are living in an age marked by rapid growth in knowledge about the human body and brain, and new technologies with the potential to change them. The University of Sheffield Undergraduate courses Postgraduate taught courses PhD study Accommodation International students Jobs Information for visitors Player Student policies and protection plan Make an online payment Support us Student hub Staff hub Alumni Departments and services Students' Union Library Contact The University of Sheffield Western Bank Sheffield S10 2TN +44 114 222 2000 Top-100 THE World University Rankings Russell Group University of the year - What University? Student Choice Awards 2024 Five Queen's Anniversary Prizes Facebook logo X logo YouTube logo Instagram logo TikTok Footer menu Feedback Privacy Accessibility |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.sheffield.ac.uk/ihuman/news/2nd-international-conference-disability-studies-disability-m... |
| Description | Art of Medicine, Love of Humanity Podcast series |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Podcast Series 'The Art of Medicine: Love of Humanity' available here. In this podcast series we talk to activists and researchers with learning disabilities who tell us about the ways in which they have tried to push for humanising healthcare |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://podcasters.spotify.com/pod/show/esrchumanhealth |
| Description | Conceptualising Inclusive Care, Cancer and Social Exclusion Event, Truly Inclusive Care |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | We delivered a talk titled 'Conceptualising Inclusive Care: Reflections from the Humanising Healthcare project'. The event was titled 'Cancer and Social Exclusion' for the Truly Inclusive Care series, and was held on Friday 17th May 2024 by the Christie NHS Foundation Trust's School of Oncology. The audience were mainly NHS healthcare practitioners, including, consultant doctors, nurses, occupational therapists, NHS managers, radiographers, dieticians, physiotherapists, public health specialists, GPs, clinical psychologists and psychiatrists. Many of these healthcare practitioners specialised in cancer or palliative care. There were also social workers and local authority employees, a government affairs lead, medical educators, researchers. The audience were mainly from the UK, but some attendees were also from Ireland. The audience consisted of 315 attendees (270 online and 45 in-person). We were given one quote of feedback on our talk by the organisers which highlighted that a participant felt that our talk helped them to think differently and acknowledge their own skills. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Disability Matters Podcast |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Conversations about Arts, Humanities and Health is a series of free, online events where scholars, health professionals, and the public discuss how arts and humanities can inform healthcare. Hosted by The University of Kent and with the support of the Churchill Foundation, these events seek to develop meaningful dialogue and connection between humanities and medicine. Dan Goodley joined colleague Kirsty Liddiard to discuss the ways in which Disability Matter's Scholarship work offers a paradigm shift to disability as driving subject in the medical humanities. The podcast also made reference to Humanising Healthcare: as an example of co-produced research. A link to the podcast can be found below |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://podcasters.spotify.com/pod/show/convoartshealth |
| Description | Humanising Healthcare - Online Exhibition |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | The Humanising Healthcare - Online Exhibition is an online, crowd-sourced exhibition which showcases the work of people with learning disabilities and their organisations as they fight for more humanising kinds of healthcare. |
| Year(s) Of Engagement Activity | 2022,2023 |
| URL | https://sites.google.com/sheffield.ac.uk/esrchumanisinghealthcare/exhibition |
| Description | Humanising Healthcare and Disability Matters |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Dan Goodley and Rebecca Lawthom presenting at the Nordic Network of Disability Research Conference in Iceland, 9th to the 12th May as part of the Critical Disability Studies iHuman/ School of Education community. Our paper showcased some of the aims and ambitions of the Humanising Healthcare team and connected with researchers from Nordic countries. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Humanising Healthcare in Cornwall |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Other audiences |
| Results and Impact | Bojana Daw Srdanovic presented at the event 'Don't leave us behind'. The event was organised by our partner's CIDER from Cornwall. It was about getting ideas on how people with learning disabilities can become involved in research. It asked the question of how to make research accessible. Bojana's presentation was about how caring for each other can help us make research accessible. When people care about and for each other, they can be honest. They feel safe and get creative. When we care for each other we become serious about meeting each other's access needs. Bojana also presented the Good Practice Guidelines we developed for Humanising Healthcare. It was great to get some feedback on it - one attendee said that the guidelines are clear and should be used for all inclusive research projects. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Humanising Healthcare in Prague |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Dan Goodley represented the Humanising Healthcare team this week, delivering a keynote paper entitled People with learning disabilities as public intellectuals. Invited keynote address, Goodley, D. (2023). People with learning disabilities as public intellectuals.Sociology of Health and Medicine in the Public Arena: During the Covid-19 Pandemic and Beyond, Research Network of Sociology of Health and Medicine, Prague, May 2023. As a team we are committed to a number of outputs - including plain English, Easyread and academic paper - and this paper was written for academics and practitioners. A version of this paper will be published in the journal Subjectivity in 2023. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://iss.fsv.cuni.cz/en/esarn16 |
| Description | Humanising healthcare of people with intellectual disabilities |
| 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 | Dan Goodley gave a keynote presentation to Faculty of Psychiatry of Intellectual Disability Annual Conference Date: Wednesday 1st - Thursday 2nd November 2023 Venue: Leeds Hilton Conference Centre Day 1 - Wednesday 1st November 2023 |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.rcpsych.ac.uk/members/your-faculties/intellectual-disability-psychiatry |
| Description | Inclusive Leadership Conference, EDIS, Francis Crick Institute, London |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Dan Goodley was invited to present as part of a panel on Inclusive Leadership at the EDIS2023 event at the Francis Crick institute in London. Dan joined Hamied Haroon, the Chair of National Association of Disabled Staff Networks, to lobby for the centralisation of disabled people in the conceptualisation and management of research. More details of the EDIS2023 event can be found here: https://edisgroup.org/edis-symposium-2023-delegate-booklet/ |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://edisgroup.org/edis-symposium-2023-delegate-booklet/ |
| Description | Interview for national radio |
| Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | Professor Dan Goodley, from the University of Sheffield's School of Education, explains the importance of the International Day of Disabled Persons, which took place on Sunday. Voice of Islam - (item starts: 31:14) |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://voiceofislam.co.uk/the-breakfast-show/ |
| Description | National Student Psychiatry Conference 2024 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Postgraduate students |
| Results and Impact | As part of the National Student Psychiatry Conference (2024), we provided a workshop on the Humanising Healthcare project for medical students interested in becoming psychiatrists. The workshop included a talk and a discussion. Participants reported a change in views and some expressed an interest in staying in touch with the project or getting involved. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.rcpsych.ac.uk/become-a-psychiatrist/med-students/national-conference |
| 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 | RADiANT take over |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | We did a series of three talks for RADiANT's CPD series - primarily for healthcare practitioners. There were about 80 attendees. The talk titles were as follows: (1) Introducing the Humanising Healthcare project; (2) Co-production with people with learning disabilities; (3) Theorising Humanising Healthcare. Audience members shared that the talks had challenged their views. |
| Year(s) Of Engagement Activity | 2023 |
| 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 |
| Description | Workshop - Communications, Autistic people, and People with Learning Disabilities, University of Durham |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | We did a workshop for a hybrid event titled "Communications, Autistic people, and People with Learning Disabilities". Our talk was titled 'Theorising Humanising Healthcare with people with learning disabilities and/or autism'. We provided a talk and a workshop. There were about 30 people present. About half were researchers (including postgraduate students) and about half of the attendees were people with learning disabilities and/or autism and their parents. |
| Year(s) Of Engagement Activity | 2023 |