Multiple Learning Disabilities Research Articles

Exploring the value of family shared reading with young people who have Profound and Multiple Learning Disabilities (PMLD)

Shared reading with young children is promoted as good practice in national and international policy. Existing literature explores cognitive and developmental benefits of family shared reading for young, typically developing children, but much less is known about benefits for young people with learning disabilities. Additionally, the analysis of ‘benefit’ is often cast in economic terms to society rather than through the sociological lens of everyday ‘family practice’. This paper explores the significance of shared reading for two young people with Profound and Multiple Learning Disabilities (PMLD), a group traditionally characterised as having a developmental age of 24 months or less and who may therefore continue to enjoy shared reading far beyond early childhood. Drawing on iterative qualitative data analysis of semi-structured interviews with two mothers, findings suggest that shared reading is a valued everyday practice fulfilling a range of functions such as emotional regulation, marking time and routine, and inclusion with siblings. The paper considers ways to support shared reading within PMLD families in research, policy and practice.

Health and healthcare of people with learning disabilities in the United Kingdom through the COVID‐19 pandemic

AbstractBackgroundDuring the COVID‐19 pandemic in the United Kingdom, many health services were withdrawn from people with learning disabilities, with negative impacts on people's health. What has happened to people's health and healthcare as we move beyond the pandemic?MethodsAccess to health services and health status were tracked for 550 UK adults with learning disabilities, using structured online interviews with people with learning disabilities and online surveys with family members or paid carers. Information was provided four times, from Wave 1 (in the winter 2020/2021 ‘lockdown’) to Wave 4 (autumn 2022, over a year after public health protections stopped).FindingsBy Wave 4, most people with learning disabilities had had COVID‐19, although high vaccination rates limited the number of people hospitalised. There was little evidence that use of GP services, community nurses, other therapists or annual health checks had increased over time, and at Wave 4 more people were having difficulty getting their medicines. People's health did not substantially improve over time. People with profound and multiple learning disabilities had poorer health and were less likely to be accessing health services.ConclusionsImprovements in access to health services for people with learning disabilities after the pandemic have not yet happened.

Sensory approaches for adults with severe or profound and multiple learning disabilities: A systematic literature review

Introduction: Sensory approaches are often used by Occupational Therapists working with clients with a severe or profound and multiple learning disabilities (SLD/PMLD). The aims of this review were to synthesise the outcomes of sensory approaches for adults with an SLD/PMLD and describe the key intervention components. Method: A mixed methods literature review of three databases was completed to identify studies where sensory approaches were used for clients with an SLD/PMLD. Peer-reviewed research articles published between January 1990 and April 2021 were included. Data quality was assessed using the Mixed Methods Appraisal Tool. A convergent-segregated approach to synthesis was taken, including thematic analysis of qualitative data and a narrative review of quantitative data. Results: Eighteen studies were included. Positive outcomes were reductions in challenging behaviour, stress and improved engagement, attention and communication. Three themes emerged, suggesting important components of sensory approaches for clients with an SLD/PMLD: matching sensory stimuli to the needs of the individual, sensory integration therapists and caregivers as facilitators and increased intervention duration and frequency. Conclusion: Evidence suggests that sensory approaches support positive social, emotional and cognitive outcomes for individuals with an SLD/PMLD. Essential features of sensory approaches for this client group are sensitive use of sensory stimuli, skilled facilitators and more intensive intervention protocols.

Children and young adults with profound and multiple learning disabilities: Evidence of intelligible subvocal language

IntroductionLiterature to date describes people with Profound and Multiple Learning Disabilities (PMLD) as pre-linguistic. In contrast, this study explores the existence and use of meaningful sub vocal (SV) language by twenty PMLD participants. MethodThe SV utterances of 20 PMLD participants were recorded and amplified. Recordings were investigated for evidence of language content and structure, listener intelligibility, and acoustic and phonetic features relative to normal speech and whisper. ResultsLanguage content and structure was identified. Listener intelligibility was demonstrated. Acoustic and phonetic features relative to normal speech and whisper were evident. ConclusionTwenty PMLD participants produced meaningful SV language intelligible to listeners. This study requires further robust research to fully confirm its findings but highlights implications for clinical practice and for understanding of PMLD communication competencies.This paper is accompanied by audio samples and transcriptions of recorded utterances to demonstrate the SV language produced by the participants. The quality of the samples varies due to the difficulties in recording SV utterances and the difficulties for participants in articulating clearly. This is not normal speech, but it is normal language. The listener may need to replay samples where the quality of the recording is poor.

The Impact Of Action- Oriented Approach On Teaching English To Students With Mild Specific Language Learning Difficulties

Students with mild specific language learning difficulties encounter numerous challenges when acquiring the English language, and require a significantly longer period of time to attain independent language proficiency compared to their non-disabled counterparts. The objective of this investigation is to analyze the impacts of implementing An Action-Oriented Approach in the instruction of English language to secondary school students who exhibit Mild Specific Language Learning Difficulties. In order to accomplish this objective, a training program utilizing the Action Oriented Approach was administered to a cohort of 15 students who exhibit Mild Specific Language Learning Difficulties, as developed by a team of experts. The study employed quantitative data collection instruments, namely Unit-based Achievement Tests for four units and Classroom Observation Forms administered to students with Mild Specific Language Learning Difficulties both prior to and following the training programme. The quantitative data were subjected to analysis using the SPSS 21 statistical software and R Program version 3.2.5. The findings of the study suggest that individuals with mild speech and language learning difficulties exhibit a delay in their learning progress. Nevertheless, employing suitable pedagogical approaches and methodologies can enable students with mild speech and language learning difficulties to achieve a level of learning commensurate with that of their peers. The results of Unit-based Achievement Tests indicate that students with Multiple Severe Learning and Language Disabilities (MSLLD) may exhibit greater progress in their academic development compared to their typically developing peers. Finally, the research findings suggest that the Action Oriented Approach is advantageous in instructing English language skills to students who experience minor challenges in learning the language.

Persons with profound and multiple learning disabilities as subjects of knowledge: Exploring the possibilities of empathy

AbstractBackgroundPersons with profound and multiple learning disabilities (PMLD) risk exclusion, both in research and as members of society. Because of their embodied communication, they face the challenges in being understood. Oftentimes, others speak on their behalf making inferences on what their perspective might be.MethodsEmpathy is suggested as an approach to grasp the perspective of a person with profound and multiple learning disabilities through engaging with embodied communication. The account of empathy suggested by Stein will be unfolded through an ethnographic study including persons with profound and multiple learning disabilities and their professional supporters. Given this background, the intent is to discuss the potential empathy can have in recognising persons with these disabilities as subjects of knowledge.Findings and ConclusionsThe characteristics of persons with profound and multiple learning disabilities provide energy to empathic situations in ways that advocate for the possibility of being recognised as subjects of knowledge. This is related to the competencies of the individual, ambiguous communication and the dependency relations in which they are involved. It is of utmost importance to respect the alterity of the other.

Collaborative music-making: special educational needs school assistants as facilitators in performances with accessible digital musical instruments

The field of research dedicated to Accessible Digital Musical Instruments (ADMIs) is growing and there is an increased interest in promoting diversity and inclusion in music-making. We have designed a novel system built into previously tested ADMIs that aims at involving assistants, students with Profound and Multiple Learning Disabilities (PMLD), and a professional musician in playing music together. In this study the system is evaluated in a workshop setting using quantitative as well as qualitative methods. One of the main findings was that the sounds from the ADMIs added to the musical context without making errors that impacted the music negatively even when the assistants mentioned experiencing a split between attending to different tasks, and a feeling of insecurity toward their musical contribution. We discuss the results in terms of how we perceive them as drivers or barriers toward reaching our overarching goal of organizing a joint concert that brings together students from the SEN school with students from a music school with a specific focus on traditional orchestral instruments. Our study highlights how a system of networked and synchronized ADMIs could be conceptualized to include assistants more actively in collaborative music-making, as well as design considerations that support them as facilitators.

Evidence‐based practice: the use and abuse of research

The authors of this position paper argue that there is currently very little evidence‐based practice in relation to learners with severe learning disabilities (SLD) and profound and multiple learning disabilities (PMLD), and that which there is, has often been badly used and/or abused. More specifically, we argue that relevant educational research undertaken so far has a strong tendency towards: (i) conflating the need for common strategies to be universally used in teaching, with the ‘need’ for a common curriculum; (ii) quoting research that applies to children with certain types of SEND as though it applies to all children with SEND; (iii) assuming there is a homogeneity of learning disability among people with the same condition (for example Down's syndrome, autism) and (iv) encouraging assumptions that any academic progress, no matter how small the gain, is axiomatically superior in value for all pupils. The authors conclude that there is need for a new look at ‘evidence‐based practice’ for these populations.

Reflections on Veronica Sherborne and the practical application of the Sherborne Developmental Movement

This personal reflection explores the life and work of Veronica Sherborne. It follows her journey from a student of physical education and dance at Bedford College in the 1940s to senior lecturer in special education at Bristol Polytechnic, where she taught student teachers about pair work with children with special educational needs and disabilities. It depicts how she met her mentor, Rudolf Laban, and young people with profound and multiple learning disabilities and their influences on the development of Sherborne Developmental Movement. Throughout the reflection, there are details about the teaching and impact of her pioneering movement work. It highlights the importance of her relational shared movement experiences in nurturing social engagement, bonding, emotional regulation, and focus in vulnerable children. There is reference to Sherborne’s intuition about movement, play, and touch as embodied languages. The author posits why neuroscience might recognise Sherborne Developmental Movement as a body-based bottom-up approach.

Developing thinking teachers: reflective practice in schools for children with severe learning disabilities and profound and multiple learning disabilities

The increasing complexity of children with SLD and PMLD can make day‐to‐day teaching challenging and emotionally taxing. Regular opportunities for teachers to reflect upon practice can help teachers make sense of what happens in the classroom and see the relationship between their personal theories, values and beliefs, and their thinking, knowledge and action. Reflective practice can also have a positive effect on teachers' wellbeing. Continuing Professional Development Practice in special schools should not ignore ‘professional artistry’ in teaching in favour of ‘technical‐rational’ aspects. This is discussed in reference to a practical exercise on Reflective Practice used with staff in a school for children with SLD and PMLD.

Digital participation of people with profound and multiple learning disabilities during the Covid‐19 pandemic in the UK

AbstractBackgroundDuring the Covid‐19 pandemic, there has been a worldwide increase in the use of digital technology. Many people with learning disabilities have learned new digital skills, taken part in online activities, and kept in touch with family and friends using video calls. However, the experiences of digital participation or nonparticipation for the people with profound and multiple learning disabilities (PMLD) is less understood.MethodBetween December 2020 and August 2021, family carers or paid support workers of adults with PMLD completed an online survey around the experiences of the person they care for during the Covid‐19 pandemic, including questions on Internet use. We draw on the findings of this UK‐wide study to explore the digital participation of the people with PMLD during the pandemic.FindingsAround half of the people with PMLD had Internet access at home. Around half of the participants interacted with others on video calls like Facetime or Zoom and most commonly used the Internet for being with family and friends online and streaming TV and films. In the event of another lockdown, 27.5% of the people supporting someone with PMLD said they would like support with technology to make seeing friends and family easier. For some the people, digital participation during the pandemic was not beneficial enough to want to continue when restrictions eased. For others, the new online experiences had the potential to be developed in their postpandemic lives.ConclusionAround half of the people surveyed participated in digital activities during Covid‐19. Future attention is needed to afford more people opportunities, and respond to access barriers experienced for the people with PMLD and those that support them.

SPLASH study: Exploring caregiver perspectives of adults with severe or profound and multiple learning disabilities accessing sedentary hydrotherapy

SPLASH study: Exploring caregiver perspectives of adults with severe or profound and multiple learning disabilities accessing sedentary hydrotherapy

Advancing inclusive research with people with profound and multiple learning disabilities through a sensory-dialogical approach.

People with profound and multiple learning disabilities are often excluded from the processes of knowledge production and face barriers to inclusion in research due to cognitive and communicative challenges. Inclusive research-even when intending to be inclusive-tends to operate within criteria that exclude people with profound and multiple learning disabilities. The aim of this article is to provide a state-of-the-art review of the topic of inclusive research involving people with profound disabilities and thereby challenge traditional assumptions of inclusive research. The review presents themes that will inform a discussion on how to challenge the criteria in ways that make it possible to understand inclusive research for people who communicate in unconventional ways. We argue that a fruitful way of rethinking inclusive research is by applying a sensory-dialogical approach that privileges the dialogical and sensory foundations of the research. We suggest this might be a way to understand inclusive research that regards the person's communicative and cognitive distinctiveness.

The role of music within the home‐lives of young people with profound and multiple learning disabilities: Parental perspectives

Accessible summary Music is often part of our lives. We asked parents what music is like for children and young people with profound learning disabilities at home. People listened to music more than they made music at home. Music is used for different reasons. Music can help families feel more connected. ​AbstractBackgroundMusic is weaved within our cultures; it is ever‐present within daily‐life and can considerably influence our mood, well‐being and relationships. This study explores parental perceptions of the role of music in the home‐lives of children and young people with profound and multiple learning disabilities in the UK. It considers parental views of how listening to and making music can shape the mood and behaviours of their child and their relationship.MethodsUsing a mixed‐method explanatory sequential design and cross‐sectional survey methodology, the study collected data from parents and carers of children and young people with profound and multiple learning disabilities. Data were collected from an online questionnaire (n = 48) followed by online one‐to‐one interviews (n = 10).FindingsParents reported that children and young people with profound and multiple learning disabilities more frequently listen to music than make music within the home. They also stated that music is used for enjoyment, to support mood‐regulation and to add structure to the lives of young people with profound and multiple learning disabilities. Parents finally reported that listening to music together helps families feel more connected and strengthened their relationships.ConclusionThis paper outlines the positive role music may have in the home lives of people with profound and multiple learning disabilities and their families.

Enabling design: a case of maker workshops as a method for including special educators in creating digital interactions for learners with profound disabilities

PurposeThis purpose of this paper is to present findings from three workshops that aimed to enable learners with profound and multiple learning disabilities to have a richer, more meaningful experience of a digital curriculum and to bolster a more meaningful creative exchange than currently offered by off the shelf products.Design/methodology/approachInformed by the maker culture and participatory action research, this workshop method focussed on making prototypes and creating concepts that encourage a dialogic approach for envisioning future technologies. As a process of enabling design, this approach placed participants at the heart of iterative methods that support imaginative ideation and improvisation, rather than the production of marketable products.FindingsA thematic analysis of post-workshop discussions revealed that participants felt inspired and supported to envision learner responses to stimuli as novel interactions, without prior knowledge of designing and coding. The collaborative approach provoked the articulation of narratives on learner ability and a reconsideration of “digital” with a contemporary curriculum for learners with profound disabilities.Practical implicationsRunning a maker workshop requires a time and resource commitment from all parties. The emphasis is on easy-to-follow, direct teaching together with low cost electronics and non-digital materials, ensured that these demands were kept to a minimum. However, the gains of participation can only be maintained when support exists both in and out of the workshop environment through the provision of resources and communication channels.Originality/valueThe originality of the workshops lies in the focus on basic electronics, coding and prototyping as a means to think about digital futures. As a method of enabling technologies to tap into learner ability, this process fostered design dialogues through the social act of making, sharing and learning without the need for prerequisite skills.

Healing touch: Using the arts to increase healthy touch between people with PMLD and their carers

For adults with learning disabilities, touch is a necessary element of their everyday care. Yet touch delivered by care providers is a contentious and marginal practice, which is often avoided due to fears of abuse allegations, and the effects of touch avoidance can be significantly detrimental to the quality of care provided. The Safe Touch pilot project, developed with a London-based organization providing care to adults with learning disabilities, including those with profound and multiple learning disabilities (PMLD), used performing arts practices and massage to help the staff develop and utilize ‘positive’ touch – touch for communication, interaction and well-being – when working with service users. Fifteen service users with learning disabilities and PMLD along with the organization’s staff participated in the project. Drawing on the project’s processes and findings, some successes and limitations in employing performing arts activities with care staff to increase the use of positive touch with people with PMLD were identified.

The psychopathological profile of children with specific learning disorders: the point of view of children and their mothers

ABSTRACT Individuals with Specific Learning Disorders (SLD) are at risk of increased psychological distress, such as internalising (e.g. anxiety) or externalising (e.g. aggressive behaviour) symptoms. This study investigates the psychopathological profile of children and adolescents with SLD from their point of view and the point of view of their mothers. The sample included 98 mother-child couples, with children having a single identified disability area (e.g. only dyslexia) or multiple disability areas. Children having SLD presented a higher than expected (based on the normal distribution) percentage of clinically relevant and borderline scores in internalising symptoms, as well as in the DSM-oriented scales of affective, anxiety, and somatic problems, ADHD and oppositional defiant problems; rates of symptoms were higher in mothers’ reports. More symptoms of ADHD and oppositional defiant disorder were reported for children with multiple learning disability areas, and more internalising symptoms were associated with dyscalculia. These results highlight the presence of both internalising and externalising symptoms in individuals with SLD, with stronger difficulties observed by mothers compared to children themselves. Also, having multiple learning disability areas in comorbility and having dyscalculia could be risk factors for more severe psychopathology in children with SLD; this information could guide clinical work.

Using Musical Play with children with profound and multiple learning disabilities at school

We all ‘play’ music! Play experiences for children with profound and multiple learning disabilities (PMLD) are often compromised, lost in complex care routines, increasingly stretched timetables and a lack of suitable play interventions. This study investigates combining music with play, using a set of guidelines and principles developed by the researcher and staff participants: Musical Play. It evaluates the impact of Musical Play on the play experiences of both the learners and staff. This study included five primary‐aged children and four teaching staff, during a five‐week implementation period in a UK special school. The study collected multiple data sources to evaluate the impact of the intervention. Results reveal that Musical Play elicited engaged, playful and creative responses, encouraging peer‐awareness and interactions. The intervention allowed staff a sense of freedom from target‐driven work, providing a unique opportunity to immerse themselves fully in the play experience.

Exploring delivery of 24-hour postural management for adults with profound and multiple learning disabilities

Keywords Caregiver Collaboration, PMLD (Profound and Multiple Learning Disability), 24-hour Postural Management

Arts, Disability and Crip Theory: Temporal Re-Imagining in Social Care for People with Profound and Multiple Learning Disabilities

People with profound and multiple learning disabilities (PMLD) are some of the most marginalised in society and are perceived to lack agency. This paper contests such a narrative, presenting findings from an innovative project in Scotland, UK, exploring the impact of artists working collaboratively with people with PMLD and their formal carers. Art is conceived as a social practice, a process, an embodied aesthetic and sensory experience that takes place between individuals. Theoretically, the paper adopts an original approach, combining crip theory, the capability approach and social pedagogy to re-imagine and re-position people with PMLD. The year-long qualitative study used data from reflective diaries (n = 111) and semi-structured interviews (n = 9) with artists, carers and management of a day centre. An Interpretative Phenomenological Analysis of these shared experiences was used. The results reveal an unsettling of prevailing norms and creative ways of doing and experiencing social care that is relational.