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.
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.
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).
Dr Carmel Conn (UDIDD Member)
The research is one of several projects currently being funded by Welsh Government to investigate the impact of the pandemic in the education sector. It has the aim of providing information about decision making of educators in relation to grouping practices used with learners with additional learning needs (ALN), and also of gaining insight into the differing experiences of learners around the time of the pandemic as well as their priorities for the future. The project is a collaboration between USW, Swansea University, University of Wales Trinity Saint David and Wrexham Glyndwr University with data collection taking place in two regions of Wales. A mixed methods design is being used to gather information about grouping practices from learners and educators, with focus groups and interviews taking place in schools in the two regions and a questionnaire going out to ALNCos in primary and secondary schools.
Dr Carmel Conn (UDIDD member), Neil Mahoney, Yasmeen Multani & Jodie Rees
An evaluation study of the impact of a postgraduate professional learning course that seeks to support the co-construction of knowledge and practitioner reflection in relation to autistic learners in Further Education.
Support for this group of learners has been identified as a priority area for professional learning in Wales and Welsh Government funding has been used to fund a cohort of students on the Postgraduate Certificate SEN/ALN (Autism) that is taught in the School of Education, Early Years and Youth Work at USW.
Participants in the evaluation study represented all FE colleges in Wales and included experienced teachers and leaders, most of whom have a role focused on inclusion and learning support within their setting. The study involved two phases of data collection: a baseline questionnaire and follow up interviews at the end of the year of study.
Findings are that practitioners did not believe they gained new knowledge about autism, but felt the course confirmed their existing beliefs and supported the development of more nuanced understandings about autism. This has given rise to more professional confidence about practice. New knowledge gained from insider accounts was described in relation to the nature of difference for autistic learners with implications for what is seen as important in terms of the focus of support practices.
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.
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:
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.
Dr Carmel Conn (UDIDD member), Dr Matt Hutt
This research is focused on inclusive education in the Welsh context and is the result of a collaboration with Dr Cathryn Knight and Professor Tom Crick at Swansea University.
Teachers' attitudes and perceived efficacy to implement inclusive education are understood to be critically important to the achievement of an inclusive education system, but no research to date has investigated teachers’ attitudes towards inclusion in Wales.
The aim of this research is to find out about how teachers perceive and understand the concept of inclusive education and what barriers to inclusion are described by teachers in Wales.
The two-phase study used data collection approaches including a nation-wide online questionnaire focused on teachers’ attitudes towards inclusion, followed by in-depth interviews with a representative sample of teachers. Phase 1 of the research is now completed, and Phase 2 will be carried out in the next academic year.
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.
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.
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.
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.
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.
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
Dr Steven Walden (UDIDD Member) & Dr Owen Barden (Liverpool Hope University)
Funded by the British Academy/JISC Digital Research, this project is using the digitised UK Medical Heritage Library Corpus (UKMHLC) to generate new knowledge about the history of learning disability in the UK.
The overall objective is to make an important contribution to the growing field of interdisciplinary and participatory research about learning disabilities.
The project is using a bespoke qualitative (thematic/interpretative) research methodology to address this objective, combining archival research with participatory focused workshops.
The project aims to demonstrate how access to archive material, and the research process itself, for a marginalised group can be enhanced.
The intention is that the lived experience of learning disabled participants will help generate new knowledge.
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 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: 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.
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.
(UDIDD Member), Dr Lawrence Taggart (Ulster University),
Dr Janet Finlayson (Caledonia University) and Dr Claire Lam (University of St
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.
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.
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.
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.
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.
Paula Hopes (UDIDD Member)
SBUHB commissioned an external review of the community learning disability services across the health board footprint.
The reviewers used an appreciative inquiry methodology to enable those involved in the review (clinicians and managers from across the service) to identify their preferred future for community learning disability services.
The report of the clinical review suggests that current specialist community learning disability services require significant development. A Community Learning Disability Team project group has been established in partnership with people with learning disabilities to take forward the recommendations for the review and service transformation is planned.
Dr Carmel Conn (UDIDD Member)
The purpose of the study was to evaluate the early impact of the ALN transformation work that has taken place within the SEWC region, with specific reference to the work of the region’s ALN Transformation Lead.
The specific aim was to explore experiences of support for preparation for change of key stakeholders in local government, the regional education consortium, the education sector and across children’s services using focus groups and telephone interviews.
Specific research questions focused on what was effective in ALN transformation work, what was less effective and what are important next steps.
Dr Carmel Conn (UDIDD Member)
The aim of the project is to evaluate the implementation, effectiveness and anticipated impacts of the professional standards for teaching, leadership and assisting teaching in terms of their ability to support the development of a highly-skilled workforce ready to meet the challenges of education reform in Wales.
The evaluation will address the following objectives: to assess engagement with standards amongst practitioners, to review the implementation of the standards amongst practitioners, to understand what factors and/ or conditions support or impede effective implementation of and engagement with the standards, to consider whether the standards have been effective, to explore the anticipated impacts of implementing the standards at the practitioner, school and system level, and to make recommendations for future policy and practice across the whole system.
The project recently completed an inception phase, but the first phase of interviews is currently on hold.
Dr Carmel Conn (UDIDD Member)
The aim of the project was to produce professional learning tools for the EAS, namely, a quality assurance model which can be applied across the range of professional learning opportunities within the region, and a methodology for capturing the impact of professional learning.
The project involved co-constructing these tools in partnership with teachers and leaders from the EAS region through a series of panel meetings. The impact capture model that has been developed describes different ways of thinking about the impact of Professional Learning and can be applied to any activity where Professional Learning occurs.
It seeks to capture potential impact as comprehensively as possible and has been trialled by a number of schools in the region.
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.
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.
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.
Dr Wahida Shah Kent (UDIDD Member)
This mixed methods study explored the support systems of the families of Black and Minority Ethnic (BME) children with life-limiting conditions. Interviews were undertaken with twenty parent carers of BME children with life-limiting conditions, and ten practitioners working with the families of children with life-limiting conditions, in both Wales and England. The aim was to shed light on the lived experiences of this group of families, hitherto missing from the academic literature. Interviews were also conducted with professionals working with families of children with life-limiting conditions. The research explored if there was ethnic variance in terms of the experiences of this group of families in accessing support, and identify potential barriers to both informal and formal support. And also, to ascertain if professionals working with them perceived their needs and experiences to be different from white families.
Findings from the research indicate that the families of BME children with life-limiting conditions face some similar challenges caring for their child and family, to those faced by white families. Religion and culture were not found to form a barrier to use of formal services. Those families accessing formal support overall found it helpful, and formed strong relationships with practitioners. However, it is the way they and their needs are perceived by some providers of formal support services which demonstrate that they are perceived as being different and, constitutes barriers to attempts to access formal support. Assumptions and beliefs around the needs of BME families appeared to be based on ‘racial’ and ethnic stereotypes and anecdotal evidence, which the qualitative and quantitative and findings of this research challenge.
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.
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).
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.