Unit for Development in Intellectual and Developmental Disabilities

A Cluster Randomised Controlled Trial of Early Positive Approaches to Support (E-PAtS) for families of young children with intellectual disability

Funder: NIHR

Collaborators: Cardiff University, University of Kent, University of Birmingham, University College London, University of Warwick, Ulster University and Oxford University.

Brief: Associate Professor Richard May (UDIDD) and colleagues are undertaking a nationwide Randomised Controlled Trial funded by the NIHR looking at the efficacy of the Early Positive Approaches to Support (E-PAtS) programme. E-PAtS is a parent/carer support programme for families of young children with intellectual disability

https://www.epats-study.com/

Funder: NIHR

Collaborators: University of Birmingham, Bangor University, Jigsaw School, Ulster University, and the University of Kent.

Brief: Associate Professor Richard May (UDIDD) is currently leading a project examining Positive Behaviour Support (PBS) for people with learning disabilities in the UK. This project aims to capture information about professionals working in various roles within PBS with a view to identifying service delivery needs within the field.

Funder: Sharland Foundation

Collaborators: University of Birmingham, University of Warwick, Ulster University, Bangor University, Pyramid Educational Consultants Brief: Associate Professor Richard May (UDIDD) is working with a team from Pyramid Education on three projects related to skills teaching.

• The first project focuses on developing and validating an implementation fidelity tool for the Picture Exchange Communication System (PECS). While PECS is very widely used, implementation is often sub-optimal as shown in some of our team’s previous work (see https://pubmed.ncbi.nlm.nih.gov/38341815/). We are hopeful that this project will culminate in a tool that will become a benchmark for implementing PECS in both clinical practice and research settings.
• The second project consists of a feasibility study of the Pyramid Classroom Model. This model is a class-wide approach designed for students with learning disabilities that emphasises communication skills and individualised, evidence-based instruction. We are exploring the acceptability and feasibility of the model with a view to conducting a full scale randomised controlled trial to evaluate its efficacy.
• Finally, Dr May, and colleagues are also exploring the feasibility and acceptability of using PECS with adults with learning disabilities.

UDIDD is collaborating, along with others, in the CONNECT study, led by the University of Birmingham and funded by the National Institute for Health and Care Research (NIHR). The project aims to improve community engagement and participation among adults with learning disabilities, who are often at risk of social isolation. Although various interventions exist to promote participation, the concept is often poorly defined, and it remains unclear which approaches are effective, for whom, and under what circumstances. The CONNECT uses realist review, realist evaluation, and co-production methods to explore these questions. The study aims to co-produce a practical framework and guidance to support the implementation and evaluation of community participation interventions for people with learning disabilities. The project runs until June 2027.

The University of South Wales has been funded by Marie Curie Research to conduct a cutting-edge research study on access to end-of-life care for adults with learning disabilities. UDIDD members are leading this study in collaboration with the University of Southampton, Learning Disability Wales and the All Wales Forum of Parents and Carers. Researchers with learning disabilities are being supported to collaborate in the study at Kingston University. Getting the right care at the end of life means dying people and those close to them can live well right up to the end. Many people may need this sort of care, but it might not always be easy to recognise that someone with a learning disability is dying especially if they do not have cancer or dementia. In this study we will talking with bereaved family carers and bereaved support staff, as well as GPs and other health care professionals about the challenges there are in recognising that someone with learning disability might be dying when they do not have cancer or dementia. Most people with learning disabilities do not die from those 2 illnesses, thus it is important to look at this to improve access to end-of-life care for may many more people with learning disabilities. For more information about this study please contact [email protected].

This project is being carried out with Dr. Alexis Jones (FLSE) and in collaboration with a Senior Educational Psychologist who supports schools for learners with Additional Learning Needs. A class of learners are being given access to a computer-based reading intervention with the primary dependent measures being changes in pre-intervention reading scores as well as feedback on the programme from both the learners and teaching staff. The research team are also evaluating adaptations made to aspects of the programme and dependent measures so that they are more accessible for this population.

This project is being carried out with Dr. Aimee Giles and involves interviewing professionals from multiple disciplines on their experiences of using prompting methods (for example, visual cues) when teaching children with learning disabilities. To date, interviews have been carried out with speech and language therapists, occupational therapists, and professionals working in the field of behaviour analysis. Themes identified from these interviews are being used to inform a survey on how prompting methods are used and how professionals overcome potential barriers (e.g., learners becoming dependent on prompts, or limited generalisation of skills).

This project aims to conduct secondary analysis of a national population-based database (Secure Anonymised Information Linkage, SAIL), to find out the prevalence of urinary tract infections (UTIs) and incontinence (urine, bowel, or both types together) amongst adults with a learning disability, when compared to adults who do not have a learning disability in the general population. We know UTIs and incontinence are common amongst adults with a learning disability, but the actual prevalence is not yet known. Previous preliminary research has indicated that adults with a learning disability are five times more likely to be admitted to hospital for a UTI.

These emergency admissions are seemingly avoidable with earlier detection of UTIs or UTI prevention. Our recent research has also shown that adults with a learning disability who are incontinent, experience high rates of UTIs and repeated UTIs. For this reason, we would also like to find out if adults with a learning disability who are incontinent are more likely to experience UTIs, repeated UTIs, and hospital admissions for UTIs, compared to adults with a learning disability who are continent.

This project will additionally identify associated risk factors for UTIs and associated risk factors for incontinence amongst adults with a learning disability. Adults with a learning disability have different patterns of health than adults who do not have a learning disability in the general population, so these risk factors may be different from risk factors already identified for adults who do not have a learning disability in the general population. This work is important for determining the scope and scale of the problems of UTIs and incontinence amongst adults with a learning disability, and for identifying risk factors that are potentially modifiable and amenable to future interventions to reduce or prevent UTIs and incontinence amongst adults with a learning disability.

Project Staff: Associate Professor Carmel Conn (UDIDD) and colleagues

USW is working in partnership with University of Bristol and the Welsh Government Additional Learning Needs (ALN) Team on an impact project funded by the ESRC Impact Acceleration Account. The project, which is titled ‘Strengthening the Vision: Advancing Inclusive Education Initiatives in Wales’, is an 18-month project and has the aim of developing a shared understanding of what an inclusive education system should look like in Wales. Specifically, focus group discussions with teachers, and learners are being used to gather their perspectives on inclusive education in Wales and what constitutes 'generally available' provision. These insights will inform a policy brief for policymakers and the creation of a model of inclusive education in Wales.

Project Staff: Associate Professor Carmel Conn (UDIDD)

Drawing on Bacchi’s ‘What’s the problem represented to be?’ framework, this study interrogates inclusive education policy across the four nations of the UK and the Republic of Ireland. The research team, involving senior academics in the five nations, are analysing policy documentation selected on the basis of its relevance, currency and provenance. How the ‘problem’ of inclusive education is articulated and portrayed across the five nations is being investigated in terms of its content, emphasis and discourse.

Project Staff: Associate Professor Carmel Conn (UDIDD)

This research examines the policy-practice intersection, specifically focusing on how additional learning need (ALN) practices in primary schools in Wales have developed in response to recent educational reform through a focus on the work of the additional learning needs coordinator (ALNCo) and their collaboration with others. The study is using focus groups of ALNCos across south Wales to explore their sense of connectedness within the education system and the conditions that support the development of inclusive educational practices.

Funder: Commissioned and funded by British Academy and JISC

Project Staff: Dr Steve Walden (UDIDD, University of South Wales), Samantha Taylor and Rhiannon Currie (TRAC, University of South Wales), Dr Owen Barden (Trinity College Dublin), Professor Liz Tilley (The Open University), and colleagues from the University of Iceland

This project used the digitised UK Medical Heritage Library Corpus (UKMHLC) to generate new knowledge about the history of learning disability in the UK. The overall objective was to make an important contribution to the growing field of interdisciplinary and participatory research about learning disabilities. The project used a bespoke qualitative (thematic/interpretative) research methodology in addressing this objective, combining archival research with participatory research sessions comparing the life of Antonia Grandoni, a woman from 19thC Italy who lived with a learning disability, with the lived experience of learning-disabled research participants from The Brain Charity and USW TRAC (People First) to generate new knowledge. A series of focused workshops was conducted in which the archive Material pertaining to Antonia’s experiences was presented, discussed, analysed, interpreted and responded to. A range of analytical, interpretive, and creative methods appropriate for the research participants was negotiated with the including narratives, visual arts-based approaches, and creative writing, in addition to the work of professional graphic illustrators.

Funder: Creative Innovation Champions – Pilot Development Programme at USW

Collaborators: All-Wales People First (AWPF)

The Unit for Development in Intellectual and Developmental Disabilities (UDIDD) is collaborating with All-Wales People First (AWPF) to enhance the participation of people with learning disabilities (LD) from Black, Asian, and minority ethnic communities in Self-Advocacy. This initiative, funded by the University of South Wales’ Creative Innovation Development Programme, aims to tackle real-world challenges that promote economic growth and social equity in Wales.

The project specifically seeks to address barriers to engagement and foster greater inclusion within AWPF and similar organisations. While policy frameworks such as the Anti-Racist Wales Action Plan (2022–2023) support these aims, individuals who are both from minoritised ethnic backgrounds and have learning disabilities often face compounded disadvantages. As a result, the intended outcomes of such policies require sustained, targeted action to be fully realised. This study adopts a two-phase participatory approach, incorporating workshops guided by the Nominal Group Technique (NGT) to identify key challenges and collaboratively develop practical solutions. The project will result in a co-produced “Top Tips” framework to support inclusive engagement, strengthen social connections, and improve access to Self-Advocacy services for ethnically diverse people with LD.

Project staff: Joseph Powell, Edward Oloidi, Prof Stuart Todd (UDIDD) & Roiyah Saltus

This study seeks to improve understanding of the care and support experiences of racialised family and relative carers of individuals with learning disabilities (LDs). It also examines how third-sector LD organisations and local/regional groups engage with and include these carers in their work. The study adopts a two-phase methodological design.

Phase 1 applies a scoping review framework (Arksey & O’Malley, 2005) to map the existing evidence base, identify key themes, and highlight gaps in knowledge related to carers’ expectations, lived experiences, and access to third-sector and community-based support services.

Phase 2 builds on the scoping review findings through stakeholder consultations with third-sector organisations and regional advocacy groups working with racialised communities, people with LDs, and their carers. These consultations aim to contextualise and enrich the findings, ensuring they are relevant to practice and can inform the development of more inclusive policies and approaches.

Funder: Commissioned and funded by Cwm Taf People First

Project Staff: Dr Steve Walden (UDIDD, University of South Wales) and Cwm Taf People First

This focus group-based project explored the lived experiences of people with learning disabilities across different historical periods in Wales and the UK. Local Eisteddfods were used as a sociohistorical reference point to compare past experiences with those of contemporary (and some contemporaneous) Cwm Taf People First (CTPF) members. A performance element was also included, where CTPF members formed a choir and performed an original song on equality and being heard at Eisteddfod 2024. An academic poster was presented at the event. The final thematic analysis has recently been completed. A research paper is being prepared for initial submission to the British Journal of Learning Disabilities (BJLD), and an abstract has been accepted for presentation at the 30th anniversary Social History of Learning Disability (SHLD) conference in July 2025.

Funder: The Community Foundation

Project Staff: Dr Steve Walden (UDIDD, University of South Wales), Professor Emily Underwood-Lee (UDIDD), Gray Hill, and Hiroko Uenishi

This Community Foundation-funded project used a group-based focus approach in collaboration with Two Rhythms in Cardiff to explore the impact of its unique arts-based model on individuals with severe learning disabilities, their families, and support staff. A book chapter on the history of Two Rhythms and the role of the arts for people with severe and profound learning disabilities has been accepted for publication in Professor David Bolt’s forthcoming volume Cultural Stations of Disability (Routledge). The funder's report is currently being finalised, after which a research paper will be prepared for initial submission to the British Journal of Learning Disabilities (BJLD).

UDIDD is collaborating with other UK universities and third sector organisations in Bailey Thomas funded study led by the University of Birmingham.  This new piece of work follows and builds on from the successful study the team worked on during the pandemic.  You can find out more about the previous study here. In this new piece of work our focus will be only be on the lives  of people with profound disabilities and their carers since evidence suggested that recovery from the pandemic was slower and more difficult for this group.

The project will run until the end of 2028. 

Project Staff: Prof Ruth Northway, Dr Stacey Rees and Dr Edward Oloidi

Commissioned by Improvement Cymru this project has focused on the development of a tool to assist communication for people with learning disabilities in healthcare settings. 

A range of such tools already exist but they vary in terms of content, format and name. This project sought to develop a unified document that would reduce such variation in order to promote greater patient safety.  

A mixed methods approach used including a review of existing tools and evidence, an on-line survey and four focus groups with people with learning disabilities. 

Information was sought regarding the content, format and length of the proposed tool. A prototype tool based on the evidence gathered has been developed.

Project staff: Dr Matt Hutt, Dr Carmel Conn (UDIDD Member)

USW is working in collaboration with other Welsh Higher Education Institutions in the three educational regions of Wales to co-construct a model with schools for an evidence-informed education profession in Wales. Each regional group is engaging with their respective schools through a dialogic approach to the research that is designed to understand the needs of schools in relation to an evidence-informed profession. USW is working in partnership with Cardiff Metropolitan University, the EAS and CSC consortia, and local schools in the region. The project is seeking to facilitate school settings in terms of accessing, evaluating and using relevant evidence, concepts and ideas and to identify relevant needs in relation to this. 

Project staff: Prof Ruth Northway, Dr Stacey Rees and Edward Oloidi (UDIDD Members)

The Unit for Development in Intellectual & Developmental Disabilities (UDIDD), working in partnership with our Teaching and Research Advisory Committee (TRAC), DRIVE and the All Wales Forum of Parents and Carers, have been commissioned by Improvement Cymru to develop an outcomes measurement tool for people with learning disabilities. This project will run from January  - June 2022 and will adopt a three stage approach. First the views of key stakeholders will be sought as to what the tool should contain and what format it should take. This information will be used to co-produce a draft tool (Stage 2) which will then be circulated to stakeholders for feedback (Stage 3).  

Project staff: Prof Ruth Northway, Dr Michelle Culwick, Dr Wahida Shah Kent, Dr Stacey Rees and Dr Nicky Genders (UDIDD Members) 

Prof Ruth Northway, Dr Michelle Culwick, Dr Wahida Kent, Dr Stacey Rees and Dr Nicky Gendershave have been commissioned by Welsh Government to develop guidance for social workers who are supporting families where a parent has a learning disability. A range of activities have been undertaken including a scoping of relevant literature and research, interviews with parents who have a learning disability and focus groups / interviews with professionals. Draft guidance has been developed and this is currently being reviewed by key stakeholders to finalise it for publication in Spring 2022. Alongside this the team are also producing accessible information for parents with learning disabilities who are involved with Children’s Services and the Family Court. 

Project Staff: Edward Oloidi, Prof Stuart Todd and Prof Ruth Northway

Ed Oloidi, Stuart Todd and Ruth Northway have been commissioned by Improvement Cymru to scope the literature and web-based resources relating to the needs of people with learning disabilities from Black and Minority Ethnic Groups. This project will inform the work of a Task and Finish Group of the Welsh Government Learning Disability Ministerial Advisory Group.

Project staff: Dr Stacey Rees and Prof Ruth Northway (UDIDD Members)

The health inequalities and inequities that people with learning disabilities face are heavily evidenced. Further evidence is beginning to emerge regarding the impact of Covid-19 on people with learning disabilities, and it has been recognised that the pandemic has exacerbated these existing health inequalities and inequities (Desroches et al, 2020).  In addition, ethical concerns relating to various aspects of their care in the context of Covid-19 have been raised.

During the first wave of the pandemic issues were raised about the tool used to assess suitability for treatment within intensive therapy units (ITU) and its validity for use with people with learning disabilities. Further concerns were raised in relation to Do Not Attempt Resuscitation (DNAR) decision making in relation to people with learning disabilities. Evidence is also emerging that, as a group, they are at increased risk of contracting and experiencing severe effects of Covid-19 compared with the wider population (Henderson et al, 2020). Social impacts include an increase in social isolation (Tromans et al, 2020), with many regular services closing, impacting daily routines and carer support.

Middleton et al (2020) highlight the changes that learning disability nurses have made in Scotland due to Covid-19 and an account from Northern Ireland details contingency planning for the pandemic (Rogers et al, 2021). Only one piece of empirical research focusing on the role of the specialist nurse working with people with learning disabilities has been published and this was undertaken in the USA (Desroches et al, 2020). Thus, whilst it appears that nurses have adapted their practice to meet the changing needs of people with learning disabilities in the context of Covid-19 there is a research gap which this current project seeks to address.

The overall research question that this research study seeks to address is:

‘How have RN(LD)s working in England and Wales adapted their practice during Covid-19?’

The specific objectives are:

• To explore what RN(LD)s have been doing to adapt their practice during Covid-19.
• To identify how these adaptations have taken place.
• To understand the impact of their practice, and the outcomes that have been achieved.

The research study will adopt a qualitative design, using semi-structured interviews based on a critical incident technique design (Flanagan, 1954). It aims to recruit RN(LD)s working in England and Wales who have been working as a RN(LD) for the previous two years. The data will be analysed using thematic analysis (Braun and Clarke, 2006).

This study will offer a significant contribution to the learning disability nursing evidence base and provide essential insight into the practices of the RN(LD) throughout the Covid-19 pandemic. This is fundamental to future public health planning, policy development to ensure that the healthcare needs of people with learning disabilities are met, and to the further development of nursing practice and education. It will also provide a basis for future research.

Project Staff: Professor Ruth Northway & Dr Edward Oloidi

The impetus to map Learning Disability Research in Wales arose from the Welsh Government’s Improving Lives Programme. 

The need for better information regarding current learning disability research activity is key to Welsh Government’s action plan that aims to improve services and supports for people with learning disabilities and their families based on the best available evidence. 

This project was commissioned to identify current research activity in Wales in relation to learning disabilities to inform priority setting for future research. 

Using a network approach to identify research projects, a proforma was specifically developed to collect a mixture of fixed and open response data. 

Findings show that there is a range of research currently being undertaken that is focused on people with learning disabilities in Wales.   

Project Staff: Professor Ruth Northway, Rachel Morgan, Dr Edward Oloidi (UDIDD Members), Kathryn Price and Clare Churcher (University of South Wales)   

People with learning disabilities experience many health inequalities and difficulties with accessing timely and appropriate healthcare. 

A recurring issue in the literature surrounding such inequalities is that health staff often report that they feel they lack the knowledge and skills to identify and meet the health needs of people with learning disabilities. 

Improvement Cymru therefore commissioned UDID to develop a competency framework to set out the values, knowledge and skills required by health staff when supporting people with learning disabilities in relation to their health. 

The views of key stakeholders were gathered via a series of telephone interviews and these were analysed along with existing educational frameworks and relevant evidence. An educational framework has been developed based on this range of evidence.

Project Staff: Professor Ruth Northway, Dr Edward Oloidi, Dr Michelle Culwick (UDIDD Members) & Dr Jane Prince (University of South Wales)   

A mixed method investigation in to how perceived public perceptions regarding personal and sexual relationships of adults with intellectual disabilities (ID) might influence social care workers’ attitudes, beliefs and behaviours in Wales.

Law and policy place responsibility on services and staff to uphold sexuality rights and needs amongst adults with an intellectual disability (ID). However, little is known about how wider views of ID and sexual and personal relationships might affect social care workers’ (SCWs) attitudes, beliefs and behaviour towards such needs. 

Funded by the Welsh Government Academic Social Care Collaboration (ASCC), this two-stage mixed methods study explored the views of SCWs concerning how perceived social perceptions of ID might affect their own attitudes, beliefs and behaviours towards personal and sexual relationships amongst adults with an ID. 

Semi-structured qualitative interviews were conducted with 18 SCWs at stage one. A self-completion survey developed from findings at stage one was completed (n=276 - 14%) by SCWs at stage two. 

Findings indicate four dominant themes with sociocultural factors as the overarching influence on a practice-policy gap, fear and prioritisation of safety needs. 

Project Staff: Paula Hopes, Dr Edward Oloidi (UDIDD Members), and Dr Juping Yu (University of South Wales)   

Funded by Public Health England, this project sought to critically appraise existing literature concerning the role of the learning disability nurse working with children, young people and families. 

The overall objective of this study was to address the paucity of evidence pertaining to learning disability nurses’ roles and enhance understanding concerning where and how they work with children, young people and families. 

Using relevant search terms, a literature search was carried out on six relevant databases for papers published between 2000 and early 2018. Other sources searched included key websites, grey/unpublished literature, and direct access to prominent authors whose publications were reviewed where available. 

Full texts were reviewed against the inclusion and exclusion criteria before critical appraisal took place. Findings show that planning, promoting and supporting the delivery of personalised and meaningful care for children, young people and families are a fundamental role of learning disability nurses.  

Project Staff: Professor Ruth Northway and Dr Stacey Rees (UDIDD Members)

The health inequalities that people with learning disabilities face are heavily evidenced.  Some of these inequalities relate to the barriers that people with learning disabilities experience when accessing secondary healthcare.  

This two stage mixed method study explored the role of the community learning disability nurse, and how they overcome any barriers when supporting access to healthcare for people with learning disabilities.

It also explores any differences in the role when there is an acute liaison nurse in post, and any difference in the role according to level of seniority. 

Project Staff: Dr Beth Pickard (UDIDD Member)

This research project utilised a Qualitative Content Analysis, informed by Critical Disability Studies, to understand the implicit portrayal of disability on Welsh universities’ Disability Service (or equivalent) web pages. 

A concept-driven coding frame demonstrated primarily deficit-based interpretations of disability and a lack of disabled students’ voices.

It is proposed that by sharing this research with Welsh universities, it will be possible to develop anti-oppressive pedagogies and to raise consciousness of alternative interpretations of disability as a valid and valued identity.

Project Staff: RCT People First and TRAC, Dr Steven Walden and Dr Stacey Rees (UDIDD Members)

A celebration event led by Cwm Taf Morgannwg Our Voice Matters project in conjunction with RCT People 

First, USW and the TRAC team, that aims to showcase and highlight the powerful impact the voices of citizens and people with lived experiences have in shaping the future of services and communities across the region.

During phase 1 of the project, research has been undertaken to examine the current co-production climate within Cwm Taf Morgannwg and identify pockets of best practice as an aid to increase the effectiveness of how citizen voice is engaged and used, and the level of value it is given.  

Through this research, the USW/People First TRAC initiative has been accepted as a critical example of how the voices of people with learning disabilities can be captured and empowered to make real and positive social change within the health care sector.  

As such this event will use the TRAC example, alongside others from across the region, to outline where and how change needs to happen so that all citizens can be given a voice that is valued. 

Project Staff: Dr Stacey Rees, Dr Nicky Genders (UDIDD Members) and Dr Ruth Wyn Williams (Bangor University) 

A fall in applications to learning disability nursing across the UK had been evident over recent years. Some universities in England had seen such a steep decline in applications that the courses were at risk as they were no longer viewed as viable. 

This project aimed to reverse this trend and to increase applications to courses in Wales.

It produced a targeted recruitment campaign for learning disability nursing which capitalised on the 100 years of learning disability nursing events during 2019. 

A key output was the development of a video which was developed in partnership with TRAC members and acted by members of Hijinx Theatre Company 

Project Staff: Dr Beth Pickard (UDIDD Member) and Hijinx Inclusive Theatre Company

Collaborative pedagogical project with Hijinx Inclusive Theatre Company, four local special schools and USW Creative and Therapeutic Arts undergraduate students. 

This pedagogical project has been developed over the course of three years to enable first year university students to develop their knowledge and understanding of inclusive arts by learning alongside disabled pupils and disabled actors.

This project seeks to challenge the notion of learning about disability in the classroom and positions the learning in the community, with disabled pupils and disabled actors as the authorities on this experience. 

University students have facilitated creative arts workshops in local special schools, which have enabled over sixty additional pupils to engage with Hijinx’s inclusive theatre work.

Project Staff: Prof Stuart Todd, Prof Jane Bernal, Prof Kathy Lowe, Prof Edwin Jones (UDIDD Members), Dr Rhian Worth, Ms Julia Shearn, Dr Paul Jarvis, Dr Katherine Hunt (University of Southampton), Mr Phil Madden (Learning Disability Wales), Prof Mary McCarron (Trinity College Dublin), Prof Owen Barr (Ulster University), Prof Thilo Kroll (University College Dublin), Prof Rachel Forester Jones (University of Bath), Prof Sue Read (University of Keele)

Adults with intellectual disability (ID) experience inequality in access to healthcare that is considered to extend to end of life care. Their experiences of healthcare at end of life and how these compare with the general population are unknown. 

This study sought to describe end of life care outcomes for adults with ID living in residential care in the UK using the VOICES-SF questionnaire and compare these with the general population. 

A nationwide population-based post-bereavement survey demonstrated that access to end of life care for adults with ID may be constrained by a failure to identify approaching end of life.

Project Staff: Prof Irene Tuffrey Wijne (University of St Georges), Prof Stuart Todd, Prof Jane Bernal

(UDIDD Member), Dr Lawrence Taggart (Ulster University), Dr Janet Finlayson (Caledonia University) and Dr Claire Lam (University of St Georges)

Illness and death are part of life for everyone, including people with intellectual disabilities (ID). 

This UK-wide study investigated the extent to which staff communicate about death with people with ID facing terminal illness or bereavement. Staff who support people with ID in the UK (n=690) completed an electronic survey. 

Findings indicate that death affects many people with ID. Staff require training and support in communicating death.

Project Staff: Prof Edwin Jones (UDIDD Member)

The All Wales Challenging Behaviour Community of Practice (CBCoP) enables knowledge sharing and development of good practice. CBCoP members share a common interest in improving the quality of life of people with learning disabilities, who are at risk of using behaviours that challenge to communicate and get their needs met. 

Members support and learn from each other, by sharing good practice that fits within the positive behavioural support (PBS) framework. The CBCoP has developed into a cohesive and dynamic expert group with direct representation on the Welsh Government’s Learning Disabilities Ministerial Advisory Group. 

This feedback loop keeps the government informed of developing good practice and helps formulate national policy and implementation plans.

Project Staff: Dr Katja Valkama(UDIDD Member)

The Academic Network of European Disability experts (ANED) was created by the European Commission in December 2007. 

The aim is to establish and maintain a pan-European academic network in the disability field that will support policy development in collaboration with the Commission's Disability Unit. 

ANED builds upon the expertise of existing disability research centers, supported by national experts, thematic rapporteurs, and links to relevant networks in the disability policy field. 

Its philosophy and aims support the objectives of European disability policy towards the goal of full participation and equal opportunities for all disabled people. ANED provides a coordinating infrastructure of academic support for implementation of the European Disability Strategy and the United Nations Convention on the Rights of Persons with Disabilities.

Project Staff: Dr Katja Valkama(UDIDD Member)

The study sought to describe how well new models of applying for rehabilitation enable fast access to rehabilitation and a low threshold. 

Data were collected via forms filled in by Kela's benefit processors, focus group interviews with Kela's benefit processors and collaborators and one individual interview. 

Results showed that with new models for applying for rehabilitation, the client's rehabilitation path is partially accelerated. For example, in the direct decision model, the rehabilitation course may not start faster than before, even if the beginning of the process speeds up. 

New types of customer groups also require new types of work and operating models. The models make it possible to have a low threshold for applying for rehabilitation, because, for example, the need is identified in those places that are part of people's everyday lives (eg educational institutions). 

However, enabling the need to be identified requires a number of issues to be addressed, such as adequate policies, expertise and resources.

Project Staff: Dr Katja Valkama (UDIDD Member)

This project was jointly funded by the Ministry of Health and the Finnish Universities of Applied Sciences (UAS). The collaboration and partnership which started in 2013 sought to establish a comprehensive plan of nursing development in Kazakhstan until 2019.

The plan was designed to position Kazakhstan’s nursing care system in line with the international level, in accordance with the needs of modern Public Health to improve the quality, efficiency and safety of Public Health in Kazakhstan. 

This long term collaboration and partnership ensures successful results as understanding of the operating environment is comprehensive. 

The stages of development – forming, storming, norming and performing - were used to construct the current situation as well as the plans and prospects for reforming the nursing services in the Republic of Kazakhstan.

Project Staff: Prof Stuart Todd, Prof Jane Bernal (UDIDD Members), Dr Rhian Worth, Ms Julia Shearn (University of South Wales), Dr Katherine Hunt (University of Southampton), Prof Mary McCarron (Trinity College Dublin), Dr Sarah Brearly (University of Lancaster)

This study looks at the situation of people with learning disabilities (LD) living in non LD care settings. That is, typically care and nursing homes for older people.  It is considered that there is a substantial proportion of people with LD, mainly older people, living in such situations.  However, little is known about them.  

This study has obtained data on 132 people with LD in such settings at two time periods. They were a difficult group to identify and find.  They are considerably older than people with LD living in LD services, services from which many people had moved from into their current settings.  

The need for end of life care and level of mortality of this group were high indicating that end of life care research in LD needs to focus more than it has on this group.

Project staff: Dawn Cavanagh, Prof Ruth Northway, Prof Stuart Todd (UDIDD Members)

Annual health checks are effective in identifying unmet health needs and are generally acceptable to people with learning disabilities (LD). However, little is known about how the health issues identified within health checks are followed up and addressed; how people with LD self-manage any conditions identified, and the kind of support they may (or may not) receive to self-manage  their health.

This longitudinal qualitative study explored the views of 12 people with LD (18-64 years) in Wales (and where appropriate their supporters) just after the annual health check concerning their experience, issues identified and any actions proposed. Participants were again interviewed six months and then eleven months after to explore whether planned actions had been taken, their perceptions of these, what they had (or had not) achieved, how health conditions were being self-managed and the support they were receiving.

Findings shows that there was little support offered for maintaining health and wellbeing when living with a health condition in between health checks, with participants often reliant upon family or paid carers to support them in trying to make any lifestyle change.

Project Staff: Dawn Cavanagh (UDIDD Member)

This research was  undertaken on behalf of the LGBT Forum for People with LD and/or autism living in Wales to better understand the challenges facing those who may identify as LGBT+.

There is a paucity of information regarding the challenges facing service providers in supporting relationships and sexuality for people with LD in their services. It is intended that this exercise will inform understanding around the systemic barriers that may prevent people with LD from experiencing intimate relationships.

A desktop review of policies and procedures relating to relationships and sexuality of people with LD amongst supported living providers across Wales explored: (1) if organisational policies encourage proactive support around sexuality (2) do policies explicitly mention support for sexual diversity or lesbian, gay, bisexual and transgender (LGBT) people with LD (3) to what degree is there a balance between the responsibility to safeguard people with LD and the need to secure their Human Rights around relationships and sexuality within policies? (4) Is sexuality an explicit part of support plans for people with a LD in the setting?

Content analysis revealed that many policies lack information regarding how people’s relationships/sexuality needs could be supported. Most policies explicitly prioritised protection and safeguarding at the expense of support for sexuality/relationship needs. Improved training around sexuality and relationship policy and procedures is required.

Project Staff: Dr Victoria Markham (UDIDD Member), Dr Alexis Jones et al.,

This project is being carried out with Dr. Alexis Jones (FLSE) and in collaboration with a Senior Educational Psychologist who supports schools for learners with Additional Learning Needs. A class of learners are being given access to a computer-based reading intervention with the primary dependent measures being changes in pre-intervention reading scores as well as feedback on the programme from both the learners and teaching staff. The research team are also evaluating adaptations made to aspects of the programme and dependent measures so that they are more accessible for  this population.

Project Staff: Dr Victoria Markham (UDIDD) and Dr Aimee Giles (FLSE)

This project is being carried out with Dr. Aimee Giles  and involves interviewing professionals from multiple disciplines on their experiences of using prompting methods (for example, visual cues) when teaching children with learning disabilities. To date, interviews have been carried out with speech and language therapists, occupational therapists, and professionals working in the field of behaviour analysis. Themes identified from these interviews are being used to inform a survey on how prompting methods are used and how professionals overcome potential barriers (e.g., learners becoming dependent on prompts, or limited generalisation of skills).

Project Staff: Dr Richard May, Dr Victoria Markham (UDIDD Member) and Christopher Seel (PhD student - FLSE)

This project is a replication of a previous study [Markham, V., Roderique-Davies, G., Austin, J., Molina, J., & May, R. (Manuscript in Preparation). Evaluating Procedural Variables of two Stimulus Fading Strategies to Teach Complex Discrimination Skills]. The project will extend this previous work by evaluating errorless learning strategies commonly employed in receptive language instruction (e.g., highlighting the correct target or making it more salient for the learner to select) and compare these interventions to trial-and-error teaching. These interventions will be evaluated with neurotypical adults in the first instance to identify procedural parameters which may alter acquisition of the skill and generalisation to novel  stimuli.

• Associate Professor Carmel Conn
• Dr Michelle Culwick
• Dr Liz Ellis
• Emeritus Professor Amanda Kirby
• Colin Macpherson
• Dr Victoria Markham
• Associate Professor Richard May
• Rachel Morgan
• Emeritus Professor Ruth Northway
• Dr Edward Oloidi
• Dr Beth Pickard
• Stacey Rees
• Professor Stuart Todd
• Professor Emily Underwood-Lee
• Dr Steven Walden

Professor Jane Bernal’s background is in the Psychiatry of Learning Disabilities. Until 2011, she was the Medical Editor of intellectualdisability.info. Jane was a Senior Lecturer at St George’s University in London, has taught both at undergraduate and post-graduate levels, and developed multidisciplinary teaching.

Her research interest is in death and dying as it affects the lives of people with learning disabilities. She also has a longstanding on research development interest in ethics and communication, including how and whether people are told they may be dying.

Professor Catherine Bright has served as a Consultant Psychiatrist in Learning Disability at Aneurin Bevan University Health Board (ABUHB) since 2004. She holds a Postgraduate Certificate in Clinical Leadership and served as Clinical Director at ABUHB from 2014 to 2020. Although now partially retired, she continues to work part-time within the Learning Disability Acute Liaison Team at ABUHB. She holds a PhD in Physiology from the University of Edinburgh and an LLM in Legal Aspects of Medical Practice. Her academic interests include the role of medical professionals in learning disability acute liaison services, access to healthcare, patient quality and safety, mental capacity and consent, human rights, and end-of-life care.

Dr Nicky Genders was previously the Head of the School of Care Sciences at the USW. Post qualification as a learning disability nurse, she worked in different roles in community-based services for children with learning disabilities until becoming a clinical nurse tutor. In over 30 years in higher education, Nicky has held several leadership roles including Associate Head of School in 2014. 

She is passionate about high quality health and social care professional education. Her research interest includes parenting by people with learning disabilities, learning disability nurses’ identity, and leadership. 

Paula is a Consultant Nurse and has spent most of her career working with those whose behaviour is described as challenging. Paula is passionate about functional analysis, seeking to understand behaviour as a message and utilising value-based approaches to make improvements to quality of life for the individual and those around them. Her interests are in nurse education, professional development, joint-working with people with learning disabilities, death and dying particularly in relation to the inclusion of people with learning disabilities at end of life decision making.

Neil James is a Visiting Professor at the University of South Wales, with extensive expertise in curriculum design, delivery, and monitoring, alongside leadership roles in quality assurance processes and student support. He holds a Senior Fellowship with the Higher Education Academy. With senior-level clinical practice experience, Professor James facilitates learning and assessment across a spectrum of courses, from Diploma to Master levels, and provides academic supervision up to PhD level.

Throughout his career, Neil has held significant leadership positions within schools, faculties, and universities, including roles such as Course Director and Director of Practice Education at the School of Health Sciences, and Associate Dean for Learning, Teaching, and Quality at the Faculty of Medicine and Health (UEA). Currently, he serves as the Consultant Nurse for Learning Disability at Swansea Bay University Health Board, while also holding honorary positions at UEA and the University of Swansea.

Neil's research interests encompass family carer experience, challenging behaviour, mental health and learning disability, autism, forensics, qualitative research, and Interpretative Phenomenological Analysis.

His projects include addressing unmet needs within Learning Disability and Autism Services, exploring family carers' experiences regarding admission to Assessment and Treatment Units, and co-producing resources to reduce restrictive practices and raise awareness of Positive Behaviour Support (PBS).

Professor Edwin Jones is retired and maintains an interest in promoting inclusion, social justice and human rights as a Visiting Professor at the University of South Wales and a Board member of First Choice Housing Association. He has held previous roles as the strategic lead for PBS at BILD. Service Improvement and Research Lead, in Mental Health and Learning Disabilities, Swansea Bay Health Board. Edwin worked on service improvement, training and policy development focussing on Positive Behavioural Support. Edwin was a founding member of The All Wales Challenging Behaviour Community of Practice. He has held positions as visiting lecturer (International University of Catalonia), external examiner (University of Glasgow and University College Dublin), special advisor (British Institute of Learning Disabilities), Vice chair UK APBS Alliance, member of the Welsh Government Learning Disability Ministerial Advisory Group, Restraint Reduction Network and PBS academy.

Dr Rachel Jones is the National Lead for Improvement Cymru’s Learning Disability Programme. A psychologist by background, Rachel is a long-standing advocate for specialist research in the field and the application of evidence-based approaches to address systemic challenges. 

Russ Kennedy has worked in support and social care for 22 years. Since 2017, he has led Dimensions Cymru, an organisation that supports people with learning disabilities and autism in Wales. Russ is particularly interested in:

• The health and wellbeing of people who have profound and multiple learning disabilities.
• The influence of support worker health-related behaviours on the people they support.
• How multiple exclusion or discrimination affects the health and wellbeing of people who have learning disabilities and/or autism.

Dr Kathy Lowe was senior lecturer and researcher at the University of Wales (1980-2002) and Special Projects Team member at ABM University Health Board (2002 to 2019). She co-developed the Active Support Model, post-graduate/MSc courses, and three e-learning PBS qualifications at BTEC Levels 3, 4 and 5.

She is Visiting Professor (University of South Wales), visiting lecturer (International University of Catalonia), member of several local and national groups and international journal editorial boards.

Dr Maria Vincent is a GP Specialist in Learning Disability Medicine and runs a unique clinical service within Swansea Bay University Health Board, offering specialist assessments for patients with learning disabilities, severe challenging behaviours, and complex needs.

She graduated with honours in Medicine (MBChB, 2011) and Neuroscience (BSc, 2008) from the University of Bristol, and attained MRCGP in 2016. Maria completed a Postgraduate Diploma in Clinical Psychiatry (Distinction) at the University of South Wales in 2021.

Maria is a GP Partner at the Vale of Neath Practice, Glynneath, and a Visiting Fellow at the University of South Wales. She is part of the research team on the READY Study, which focuses on improving end-of-life care for people with learning disabilities who have conditions other than cancer or dementia. She maintains an active interest in research linked to learning disability health inequalities.

Maria is passionate about medical education in learning disability and regularly teaches on the Learning Disability Psychiatry Academic Programme. She has delivered sessions on complex case management, the GP’s role in learning disability care, endocrinology, and condition-specific health issues. Her ambition is to see Learning Disability Medicine recognised as its own distinct medical specialty.

Dr Lance Watkins is a Consultant Psychiatrist and Epilepsy Pathway Lead within the Epilepsy Specialist Service, part of the Mental Health and Learning Disabilities Service Group at Swansea Bay University Health Board—a tertiary service for people with intellectual disabilities and complex epilepsy.

He holds an Honorary Associate Professorship at Plymouth University and is a member of the Cornwall Intellectual Disability Equitable Research (CIDER) group. Dr Watkins also serves as the Clinical Lead for Learning Disability Research at the National Centre for Mental Health (NCMH), Cardiff. Dr Watkins has a broad range of research interests within the field of intellectual and developmental disabilities. His current projects include:

• Enhancing primary care liaison with learning disability services and improving uptake of the annual health check;
• Investigating pharmacological burden in older adults with intellectual disabilities;
• Evaluating smartphone applications for autistic individuals;
• Exploring bone health in this population.

He has a particular interest in epilepsy in the context of neurodevelopmental disorders. Currently, he is working on a joint NIHR-funded project between NCMH and Plymouth University to develop a prospective epilepsy register for people with intellectual disabilities, including biological profiling.

Dr Watkins is also a member of the Cochrane Epilepsy Review Team author group, contributing to the update of systematic reviews on pharmacological and non-pharmacological interventions for people with epilepsy and intellectual disabilities.

Yasmeen Multani
Degree: PhD
Project title: Exploring Autistic children’s play: Developing an alternative narrative of play through lively stories

Emma Reardon
Degree: PhD by Portfolio
Project title: An evaluation of how using Autistic lived experience influences outcomes in Autistic lives

Lauren Milton McNally
Degree: DPsych
Project title: An exploration of how autistic people maintain their well-being and construct mental health support

Jonathan Mark Prescott
Degree: MRes
Project title: Towards healthy intimate and family relationships: ‘what matters’ and well-being amongst cared-for adults and c

Lisa Harwood
Degree: PhD
Project title: The impact of yoga on static and dynamic balance in adults with learning disabilities in 3 Day Centres in Rhondda Cynon Taff

Caroline Andrews
Degree: MRes
Project title: Our Social Networks: Exploring the benefits of storytelling in building agency, identity and wellbeing with people with learning disabilities

Josephine Robinson
Degree: DPsych
Project title: Experiences of Bereavement in Adults with a Learning Disability

Emma Foley
Degree: MRes
Project title: Complete - Breaking Down Barriers to Research

Joseph Powell
Degree: MRes
Project title: Building Bridges: A Scoping Review of Support, Expectations and Engagement Experiences with Voluntary Organisations Among Family Carers for Learning Disabled Individuals from Racialised Backgrounds

Sarah Jane Killick
Degree: MRes
Project title: Supporting families after the death of an adult son or daughter with learning disabilities: an exploratory study involving third sector organisations