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Dr Elizabeth Tilley

Profile summary

Professional biography

I am Professor of Learning Disability Studies and chair The Open University's Social History of Learning Disability Research Group. I currently co-lead the University's C20 Social Work and Social Policy REF panel. Between 2020-2023 I was Associate Head of School for Research and Knowledge Exchange (KE) in the School of Health, Wellbeing and Social Care. In this role I was responsible for overseeing the School’s research and KE activities, including research strategy and implementation, research support and capacity building, and oversight of funded projects.

I completed my PhD on advocacy for people with learning disabilities in 2006, and then worked as a Policy Advisor at the General Social Care Council before joining the OU.

Research interests

My research interests are focused on addressing the health and social inequalities faced by people with learning disabilities and their families across the life course. Recent research has explored issues of belonging, reproductive health, ageing and end of life care, the impact of self-advocacy on health and wellbeing, and access to heritage for people with learning disabilities.  My work is interdisciplinary, with a particular interest in historical perspectives, ethics and participatory methods in health and social care research.

Between 2014-2017 I was Principal Investigator on the AHRC funded Inclusive Archive Project which laid the foundation for ongoing work concerned with collating and archiving the histories and stories of people with learning disabilities. In 2019-20 I led a UKRI ESRC funded project to set up a UK/Japan Inclusive Research Network on Intellectual Disability and Belonging, which explored the role of life stories in supporting international connections. More recently I was Co-Investigator and work package lead on the NIHR funded Growing Older Planning Ahead project, which focused on improving the support of older people with learning disabilities and behaviours that challenge others, and their family carers (2020-2023). I am currently Co-Investigator and work package lead on the NIHR funded Victoria & Stuart project, exploring how people with learning disabilities can be involved in end of life care planning (2022-2024) and am working closely with Dr Ned Redmore on research he is leading on day services for autistic people with profound learning disabilities (funded by Autistica).

In 2020 I was involved in research that explored the impact of self-advocacy and technology on people with learning disabilities during the Covid-19 pandemic. The Social History of Learning Disability research group also partnered with Three Ways School, learning disability charity Generate and independent consultant and researcher, Dr Nicola Grove to launch Surviving through Story, a project set up to collect the stories and experiences of people with learning disabilities during the pandemic.

I am an Executive Editorial Board member for the British Journal of Learning Disabilities, focusing on the In Response feature, where people with learning disabilities provide feedback on published articles.

Teaching interests

I co-wrote the free online course 'Exploring Learning Disabilities: Supporting Belonging' alongside people with learning disabilities and family carers. We also produced the interactive Living with a Learning Disability

I chaired K220 'Death, Dying and  Bereavement' in production and more recently chaired K313 'Leadership and Management in Health and Social Care'. 

I supervise PhD students on topics related to learning disability, disability, life stories and inclusive methodologies.

Externally funded projects

Co-producing an autism and profound learning disability service experience tool
RoleStart dateEnd dateFunding source
Co-investigator02 Aug 202331 Mar 2024Autistica

This project aims to co-produce a tool aimed at enabling day services to document the views and experiences of autistic people with profound learning disabilities for use in service development and evaluation. Such tools are of pressing need, as highlighted by the National Institute for Health and Care Excellence (2018) who regard capturing the views of people who access services as being key to improving social care provision. This group rely on service provision throughout adulthood, yet there are no tools or approaches that have been developed to capture this group’s views or experiences. The tool’s concept emanates from inclusive research involving autistic people with profound learning disabilities. It is now being co-produced to a practical application through interviews and workshops with autistic people, people with learning disabilities, family members and support practitioners. Autistica’s funding will expand and conclude co-production activities and support the development of a community informed application to NIHR’s Research for Social Care call.

Co-designing a toolkit of approaches and resources for end-of-life care planning with people with learning disabilities within social care settings
RoleStart dateEnd dateFunding source
Lead01 Apr 202231 Mar 2024NIHR National Institute for Health Research

Research to co-design end of life care planning resources for people with learning disabilities. Project will begin by inclusively reviewing existing tools/resources. The next stage will involve research to inform the co-production of end of life care planning tools and resources for people in services.

Improving the support for older people with learning disabilities and behaviours that challenge, family and professional carers, and end of life care planning for carers.
RoleStart dateEnd dateFunding source
Co-investigator01 Sep 202028 Feb 2023NIHR National Institute for Health Research

There are around 900,000 learning disabled people in the UK and around a fifth are estimated to engage in behaviours that challenge (BTC). These behaviours often occur when the person is upset by a change in their environment. While research and NICE guidance exists on older learning disabled people and their family carers, and separately on people with BTC; policy and research in the UK has so far failed to address how services can be addressed to support older learning disabled people with BTC. We know very little about how family caregivers face the choices and challenges about caregiving as they become older but know that decisions can be left too late to enable choice. We know even less about the experiences of older people with BTC particularly in the context of transitioning to older people’s services, in periods of crisis or at end of life. There is an even more pronounced absence in the academic and grey literature regarding the lives and experiences of older learning disabled people with no family carers. Our study will explore the support and health needs of older learning disabled people and carers and identify ways of easing transitions to different care settings through forward planning and reducing the development of BTC. This is particularly important as learning disabled people are living to an older age. We will explore how carers manage their caring role as they age themselves. How they experience and negotiate behaviours that challenge. How the concept of forward planning can be introduced in a way that is acceptable and reassuring to carers and their children. How health, social care and end of life care services can best support older learning disabled people with BTC including situations where active family involvement is absent. And how commissioners can be innovative in developing a service infrastructure that better meets the needs of this group.

Establishing a UK-Japan inclusive research network in intellectual disability: Co-producing a roadmap for belonging
RoleStart dateEnd dateFunding source
Lead01 Jan 201931 Dec 2019ESRC Economic and Social Research Council

This project aims to foster connections between researchers, self-advocates, families, service providers and policymakers in the field of learning disability, in UK and Japan, in order to explore how learning disabled people can be supported to feel like they belong. The collaboration will explore different theoretical and cultural understandings of ‘belonging’, ‘inclusion’ and ‘a good life’ to identify the places, spaces and relationships in which belonging can best be fostered, as well as to identify the barriers to belonging in different social and cultural contexts. Knowledge and practice will be shared in the areas of health and social care/welfare policy, service provision and advocacy. People with learning disabilities will be at the heart of the project, involved in their capacity as self-advocates and co-researchers. Thus the project will also involve a sharing of knowledge and practice concerning inclusive research, on the understanding that research is another context in which learning disabled people can be supported to ‘belong’.

Reproductive Rights, Contraception and Women with Intellectual Disabilities: Who Decides? Survey
RoleStart dateEnd dateFunding source
Co-investigator01 Apr 201430 Apr 2015Open Society Foundations

Contraceptive choices for women with learning disabilities’ is an Open University research project, supported by a grant from Open Society Foundations (Grant No: OR2014-12989). This inclusive project set out to explore women’s contraceptive decision-making and sought to include women with mild to moderate learning disabilities as well as women with high support needs. Between December 2014 and April 2015 we interviewed 19 women living in several locations across the United Kingdom.

Developing a co-produced, digital, and living archive of learning disability history: An exploration of ethics, ownership and new connectivities (K-12-021-ET)
RoleStart dateEnd dateFunding source
Lead01 Apr 201430 Jun 2017AHRC Arts & Humanities Research Council

The OU’s Faculty of Health & Social Care has been funded by the Arts and Humanities Research Council to develop a co-produced digital and living archive of learning disability history. The project, led by Dr Liz Tilley and conducted in collaboration with the University of East London (Rix Centre) and University of Leeds (School of Fine Arts, Art History and Cultural Studies), runs from 2014-2017. The project explores issues involved in developing an accessible digital archive in collaboration with people with learning disabilities, alongside stakeholders in the fields of technology and design; new media; health and social care; heritage, archives and museums; and education. During the project, a working prototype archive will be developed. The process of producing this prototype archive will enable the team to address a series of conceptual, ethical, legal and technological research questions; set out a sustainability plan for the long-term viability of a learning disability digital archive; and compile training resources and guidance for stakeholders in health and social care, education, and museums, libraries and archives to support people with learning disabilities to become actively involved in collating and recording their history. Please keep an eye on the project website for more information: https://www.klikin.eu/page/view/cat/3407

Learning Disability, Challenging Behaviour and Social Work: A Literature Review
RoleStart dateEnd dateFunding source
Lead01 Mar 201422 Oct 2014TCSW The College of Social Work

The project is a literature review for The College of Social Work, covering research evidence on best practice in learning disability, challenging behaviour, and social work. This project arises from the commitment of The College of Social Work to support the action programme agreed between the Department of Health and a range of professional bodies in the aftermath of the abuse at Winterbourne View, revealed in a TV documentary. Its aim is to produce guidance on good practice for social workers who support people with learning difficulties who display challenging behaviour. The objective of the literature review is primarily to inform the thinking of the College bodies – the project steering group and the Professional Assembly – who will be deciding what form the good practice guidance will take. The College wants to ensure that the advice is based on good evidence where that exists. It may also contribute directly to the development of curriculum guidance or other support materials. The final report can be found here: http://www.tcsw.org.uk/standard-2col-rhm-blog.aspx?id=8589948460

MacIntyre Commissioning for Compassion
RoleStart dateEnd dateFunding source
Co-investigator01 Mar 201430 Apr 2015MacIntyre

MacIntyre Care has, in recent years, rolled out ‘Great Interactions’, a comprehensive change management initiative to ensure that front line staff focus on the quality of the relationship between them and service users, their families, advocates and friends. In addition to training, this initiative has encompassed personality profiling, changes to recruitment practice, to appraisals and to first line manager practice; and tools for reflective practice. The Theory of Change is that workforce ‘behaviour’ rather than ‘values’ is the key to increasing choice and control in the lives of people with learning disabilities. This project evaluates the impact of ‘Great Interactions’ to provide evidence to influence commissioners to move away from commissioning based on cost and risk aversion to outcomes based commissioning. To accomplish this, and using a range of research methods including questionnaires, interviews and observation, the project focuses on the following: • What success looks like • The impact of ‘Great Interactions’ training on service users, families and staff

MacIntyre Memories: Jubilee website
RoleStart dateEnd dateFunding source
Co-investigator01 Mar 201429 Feb 2016MacIntyre

Since 1966, when it was founded by a parent of a disabled child, MacIntyre has grown to provide support services for over 1,000 children and adults with learning disabilities. To mark its first fifty years, in January 2016 MacInytre Care will launch a celebratory Jubilee history. Using a rich mixture of media including audio, video, photographs, illustrations and text, the Open University research team has worked with MacIntyre to develop an inclusive, interactive and accessible website that celebrates the history of MacIntyre and records their history within the context of the broader changes in learning disability policies and practices.

Pushing the boundaries of participatory research with people with learning disabilities (K-11-043-ET)
RoleStart dateEnd dateFunding source
Lead01 Mar 201331 Dec 2014ESRC Economic and Social Research Council

The focus of the ESRC seminar series (2012-2014) is to explore the methodological challenges related to: 1) involving people with learning disabilities in data analysis, and 2) involving people with learning disabilities who have high support needs in research. The project is led by Professor Jane Seale, in conjunction with Professor Melanie Nind, Dr Liz Tilley, and Dr Rohhss Chapman.

Publications

Menstruation and learning disability across the life course: Using a two‐part scoping exercise to co‐produce research priorities (2024)
Earle, Sarah; Ledger, Susan; Newton, Victoria; Rouse, Lorna and Tilley, Elizabeth
British Journal of Learning Disabilities ((Early access))


“Everyone has a story to tell”: A review of life stories in learning disability research and practice (2022-11-13)
Ledger, Sue; Mccormack, Noelle; Walmsley, Jan; Tilley, Elizabeth and Davies, Ian
British Journal of Learning Disabilities, 50(4) (pp. 484-493)


The history of the history of learning disability (2022-06-01)
Tilley, Elizabeth and Jarrett, Simon
British Journal of Learning Disabilities, 50(2) (pp. 132-142)


Transitions for older people with learning disabilities and behaviours that challenge others, and their family carers: a merged protocol for two rapid scoping reviews of evidence (2022)
Vseteckova, J.; Jordan, J.; Tilley, E.; Larkin, M.; Ryan, S. and Wallace, L. M.
Systematic Reviews, 11(1)


Surviving through story: Experiences of people with learning disabilities in the covid19 pandemic 2020–2021 (2022)
Bartlett, Terry; Charlesworth, Pat; Choksi, Ajay; Christian, Paul; Gentry, Susie; Green, Vicky; Grove, Nicola; Hart, Craig; Kwiatkowska, Gosia; Ledger, Sue; Murphy, Sharon; Tilley, Liz and Tokley, Kate
British Journal of Learning Disabilities, 50(2) (pp. 270-286)


Fifty years of the British journal of learning disabilities: The power of the past (2022)
Davies, Ian; Iriate, Edurne Garcia; Jarrett, Simon; Johnson, Kelley; Stainton, Tim; Tilley, Liz and Walmsley, Jan
British Journal of Learning Disabilities, 50(2) (pp. 119-121)


Transitions for older people with intellectual disabilities and behaviours that challenge others: a rapid scoping review (2022)
Tilley, Elizabeth; Jordan, Joanne; Larkin, Mary; Vseteckova, Jitka; Ryan, Sara and Wallace, Louise
Journal of Applied Research in Intellectual Disabilities, 36(2) (pp. 207-229)


Madhouse: Reclaiming the History of Learning Difficulties through Acting and Activism (2021-08-24)
Tilley, Elizabeth; Christian, Paul; Ledger, Susan and Walmsley, Jan
Journal of Literary & Cultural Disability Studies, 15(3) (pp. 347-363)


‘Working together is like a partnership of entangled knowledge’: exploring the sensitivities of doing participatory data analysis with people with learning disabilities (2021)
Tilley, Elizabeth; Strnadová, Iva; Ledger, Sue; Walmsley, Jan; Loblinzk, Julie; Christian, Paul Anthoney and Arnold, Zara Jane
International Journal of Social Research Methodology, 24(5) (pp. 567-579)


What works in community health education for adults with learning disabilities: A scoping review of the literature (2020-11)
Owens, Rebecca; Earle, Sarah; McNulty, Cliodna and Tilley, Elizabeth
Journal of Applied Research in Intellectual Disabilities, 33(6) (pp. 1268-1283)


The impact of self‐advocacy organizations on the subjective well‐being of people with intellectual disabilities: A systematic review of the literature (2020-10-27)
Tilley, Elizabeth; Strnadová, Iva; Danker, Joanne; Walmsley, Jan and Loblinzk, Julie
Journal of Applied Research in Intellectual Disabilities, 33(6) (pp. 1151-1165)


A critical reflection on accessing women with learning disabilities to participate in research about sensitive subjects through organisational partnerships (2020-06)
Earle, Sarah; Ledger, Sue; Tilley, Elizabeth; Walmsley, Jan; Chapman, Rohhss and Townson, Lou
British Journal of Learning Disabilities, 48(2) (pp. 162-169)


Building Relationships in Inclusive Research in Diverse Contexts (2020-05)
Chalachanová, Anna; Nind, Melanie; Power, Andy; Tilley, Elizabeth; Walmsley, Jan; Westergård, Britt-Evy; Ostby, May; Heia, Torill; Magne Gerhardsen, Alf; Magnus Oterhals, Ole and King, Matthew
Scandinavian Journal of Disability Research, 22(1) (pp. 147-157)


Ageing carers and intellectual disability: a scoping review of literature (2019-12-03)
Mahon, Aoife; Pappas, Ioannis; Randhawa, Gurch; Tilley, Elizabeth and Vseteckova, Jitka
Quality in Ageing and Older Adults, 20(4) (pp. 162-178)


A Systematic Scoping Review of the Interventions Available During Care Crises for People with Learning or Intellectual Disabilities (LD) who are Cared for by an Ageing Carer within the United Kingdom. (2019-08)
Mahon, A.; Vseteckova, J.; Tilley, E.; Pappas, Y. and Randhawa, G.
Biomedical Journal of Scientific and Technical Research, 20(5) (pp. 15389-15393)


Ageing carers and intellectual disability: a systematic scoping review of literature (2019)
Mahon, A; Vseteckova, Jitka; Tilley, Elizabeth; Pappas, Y and Randhawa, G
Biomedical Journal of Scientific and Technical Research, 19(4) (pp. 14473-14477)


Protocol: A systematic scoping review of the impact of mutual care on individuals with learning disabilities and their ageing carers in the United Kingdom. (2019)
Mahon, Aoife; Vseteckova, Jitka; Tilley, Elizabeth; Pappas, Yannis and Randhawa, Gurch
Biomedical Journal of Scientific and Technical Research, Article BJSTR-CAR-19-RW-153


Between speaking out in public and being person-centred: collaboratively designing an inclusive archive of learning disability history (2018)
Brownlee-Chapman, Chloe; Chapman, Rohhss; Eardley, Clarence; Foster, Sara; Green, Victoria; Graham, Helen; Harkness, Elizabeth; Headon, Kassie; Humphries, Pam; Ingham, Nigel; Ledger, Sue; May, Val; Minnion, Andy; Richards, Row; Tilley, Liz and Townson, Lou
International Journal of Heritage Studies, 24(8) (pp. 889-903)


The changing face of parent advocacy: a long view (2017)
Walmsley, Jan; Tilley, Liz; Dumbleton, Sue and Bardsley, Janet
Disability & Society, 32(9) (pp. 1366-1386)


The Conundrum of Training and Capacity Building for People with Learning Disabilities Doing Research (2016-11-30)
Nind, Melanie; Seale, Jane; Chapman, Rohhss and Tilley, Liz
Journal of Applied Research in Intellectual Disabilities, 29(6) (pp. 542-551)


The experiences of women with learning disabilities on contraception choice (2016-10-27)
Walmsley, Jan; Earle, Sarah; Tilley, Elizabeth; Ledger, Susan; Chapman, Rohss and Townson, Lou
Primary Health Care, 26(9) (pp. 28-32)


Contraceptive decision-making and women with learning disabilities (2016-09-01)
Ledger, Susan; Earle, Sarah; Tilley, Elizabeth and Walmsley, Jan
Sexualities, 19(5-6) (pp. 698-724)


Contraceptive choices for women with learning disabilities (2016-03)
Walmsley, Jan; Earle, Sarah; Tilley, Elizabeth; Chapman, Rohhss; Ledger, Susan and Townson, Lou
Learning Disability Practice, 19(2) (pp. 32-34)


Negotiating a third space for participatory research with people with learning disabilities: an examination of boundaries and spatial practices (2015)
Seale, Jane; Nind, Melanie; Tilley, Liz and Chapman, Rohhss
The European Journal of Social Science Research, 28(4) (pp. 483-497)


Management, leadership and user control in self-advocacy: an English case study (2013-12)
Tilley, Elizabeth
Intellectual and Developmental Disabilities, 51(6) (pp. 470-481)


Exploring the ethical underpinnings of self-advocacy support for intellectually disabled adults (2013-09)
Tilley, Liz and Chapman, Rohhss
Ethics and Social Welfare, 7(3) (pp. 257-271)


Life stories, intellectual disability, cultural heritage and ethics: dilemmas in researching and (re)presenting accounts from the Scottish Highlands (2013)
Marshall, Karrie and Tilley, Liz
Ethics & Social Welfare, 7(4) (pp. 400-409)


Who makes crucial decisions on reproduction and contraception? (2012-10)
Earle, Sarah; Tilley, Elizabeth and Walmsley, Jan
Learning Disability Practice, 15(8) (pp. 34-35)


‘The Silence is roaring’: sterilization, reproductive rights and women with intellectual disabilities (2012-05)
Tilley, Elizabeth; Earle, Sarah; Walmsley, Jan and Atkinson, Dorothy
Disability and Society, 27(3) (pp. 413-426)


Is it the end for anonymity as we know it? A critical examination of the ethical principle of anonymity in the context of 21st century demands on the qualitative researcher (2011-04)
Tilley, Elizabeth and Woodthorpe, Kate
Qualitative Research, 11(2) (pp. 197-212)


What's important to me? Using collaborative and creative approaches to shift the power in assessment (2022-03-25)
Ledger, Susan June; Martin, Anne-Marie and Tilley, Elizabeth
In: Atherton, Helen and Crickmore, Debbie eds. Intellectual Disabilities: Toward Inclusion (7th ed.) (pp. 53-76)
ISBN : 9780702081507 | Publisher : Elsevier


The public and the relational: The collaborative practices of the Inclusive Archive of Learning Disability History (2020-02-26)
Graham, Helen; Green, Victoria; Headon, Kassie; Ingham, Nigel; Ledger, Susan; Minnion, Andy; Richards, Rowena and Tilley, Elizabeth
In: Popple, Simon; Prescott, Andrew and Mutibwa, Daniel H. eds. Communities, Archives and New Collaborative Practices. Connected Communities (pp. 219-234)
ISBN : 9781447341895 | Publisher : Policy Press | Published : Bristol


Enabling people with profound and multiple learning disabilities to belong in public and community archive collections (2020)
Tilley, Elizabeth; Ledger, Susan and de Haas, Catherine
In: Nind, Melanie and Strnadová, Iva eds. Belonging for People with Profound Intellectual and Multiple Disabilities: Pushing the Boundaries of Inclusion (pp. 176-195)
ISBN : 978-0-367-20294-1 | Publisher : Routledge | Published : London


International perspectives on the sterilization of women with intellectual disabilities (2012-12)
Tilley, Elizabeth; Earle, Sarah and Walmsley, Jan
In: Earle, Sarah; Komaromy, Carol and Layne, Linda L. eds. Understanding Reproductive Loss: Perspectives on life, death and fertility (pp. 23-36)
ISBN : 978-1-4094-2810-7 | Publisher : Ashgate | Published : Farnham


The Voluntary Sector (2006-10)
Tilley, Liz
In: Welshman, John and Walmsley, Jan eds. Community Care in Perspective: Care, Control and Citizenship (pp. 219-232)
ISBN : 1-4039-9266-5 | Publisher : Palgrave Macmillan | Published : Basingstoke, UK


Resistance in Mencap's History (2006)
Tilley, Liz
In: Mitchell, Duncan; Traustadottir, Rannveig; Chapman, Rohhss; Townson, Louise; Ingham, Nigel and Ledger, Sue eds. Exploring Experiences of Advocacy by People with Learning Disabilities: Testimonies of Resistance (pp. 128-141)
ISBN : 1-84310-359-1 | Publisher : Jessica Kingsley Publishers | Published : London, UK


Advocacy for People with Learning Difficulties: The Role of Two Organisations (2007)
Tilley, Elizabeth Kate
PhD thesis The Open University


A systematic review of interventions available during care crises for individuals with learning disabilities (LD) who are cared for by an ageing carer within the United Kingdom (2018)
Vseteckova, Jitka; Tilley, Elizabeth; Mahon, Aoife; Pappas, Yannis and Randhawa, Gurch
PROSPERO International prospective register of systematic reviews, National Institute of Health Research.


A systematic review of interventions available during care crises for individuals with learning disabilities (LD) who are cared for by an ageing carer within the United Kingdom - protocol (2018)
Vseteckova, Jitka; Tilley, Elizabeth; Mahon, Aoife; Pappas, Yannis and Randhawa, Gurch
PROSPERO CRD42018117604


Histories of Institutional Change, Choice and Money (Special Issue of the British Journal of Learning Disabilities) (2010-06)
Tilley, Elizabeth and Graham, Helen
Wiley-Blackwell, Oxford, UK.