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Background Communication interventions can facilitate communication between people with profound and multiple learning disabilities (PMLD) and familiar partners such as family and educational setting staff, including speech and language therapists. Various communication interventions are routinely used but their clinical and cost-effectiveness are unclear. Intensive Interaction (II) is one intervention that focuses on early interaction abilities. II can be delivered by staff in educational settings and/or at home. Despite many settings already implementing II, staff are sometimes untrained or have not received up to date training, potentially leading to inconsistencies in how the technique is applied and the quality of the interactions. We will provide structured training in II to educational setting staff and parents/carers with coordinated activities developed jointly for each child/young person to be delivered within the educational setting and at home. This study aims to establish whether Intensive Interaction delivered within educational settings improves communication skills of children and young people with PMLD. Methods A multi-site pragmatic cluster randomised controlled trial comparing usual care with Intensive Interaction and usual care. Clusters will be educational settings. This study will recruit 330 participants (aged 3–25 years) with PMLD from 66 educational settings within Great Britain. Each participant will have a corresponding teacher, parent/carer, and interventionist. Potential participants will be screened by their educational setting for eligibility prior to giving informed consent. Data will be collected at baseline, 32 weeks, and 52 weeks post-randomisation and will assess health and educational outcomes including participants’ communication skills, behaviour, wellbeing, and quality of life. The primary outcome is communication skills, measured by the Communication Complexity Scale (CCS) at 32 weeks post-randomisation. Setting staff will video record an interaction with each participating child/young person. Communication will be coded by members of the research team blinded to allocation using the CCS. Discussion This study addresses a much used but currently under-researched intervention and results will inform the support provided to children and young people with PMLD in their educational settings and at home. Trial registration The trial was prospectively registered on the ISRCTN registry on 3rd May 2023 (registration number: ISRCTN81099965, https://www.isrctn.com/ISRCTN81099965 ).

The touch encounters of individuals with PMLD are an under-researched area. The limited and dated research from nursing and social care acknowledges that people with PMLD are likely to encounter high levels of touch throughout their lives. Of these touches, a greater amount will be \"procedural\" or \"functional\" (task-oriented) touches than \"expressive\". An exploratory case study approach was used. In-person and video observations generated quantitative and qualitative data on and by, two teenage participants labelled as having PMLD. An adapted observation schedule on touch encounters was used. Perspectives captured during the video observations resulted in variations in the touch experiences when compared to in-person observation. These findings are discussed considering relevant theories and research. Findings suggested the use of a body-worn camera as a non-invasive approach to gathering information from the participants with PMLD, whilst also facilitating a more participatory role for people with PMLD in research. KEY WORDS profound and multiple learning disabilities (PMLD), profound intellectual and multiple disabilities (PIMD), touch, inclusive research, body-worn camera.

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.

Purpose This paper aims to identify the characteristics practitioners consider essential to effective multisensory rooms and the barriers they experience when trying to realise the potential of such rooms. Design/methodology/approach The paper presents semi-structured interviews with 27 multisensory room practitioners from a range of backgrounds followed by analysis to identify key characteristics and barriers. Findings Eleven positive room characteristics were identified. The three deemed most significant were that the rooms are dark, activity associated and uninterrupted spaces. Two negative room characteristics were identified: inaccessible design and broken equipment. Ten barriers to effective multisensory room practice were identified and grouped according to themes of logistics, suboptimal usage and practitioner capabilities. Research limitations/implications The research focuses on a small self-selecting sample, coded by one person acting independently of any institution. This is an under researched area which would benefit from further more rigorous investigation. Practical implications This research enables practitioners to remove barriers to effective multisensory room practice and to focus on the characteristics most significant in generating benefits for room users. Understanding of the essential characteristics and potential barriers to effective practice will allow practitioners to better exploit limited resources of time, money and staffing. Originality/value Past research into multisensory rooms has focused on specific user groups or specific multisensory environments. This research examined multisensory room practice across both a range of environments and a range of users, giving an original overview of current multisensory room usage in the UK.

Purpose The purpose of this paper is to provide some thoughts following on from reading “Evaluating service users’ experiences of using Talking Mats®”. Design/methodology/approach This commentary outlines some considerations for the continued discussions about how to engage people who have profound and multiple learning disabilities. Findings The literature is not clear on the involvement of people with more profound and multiple learning disabilities, or for those who do not use much spoken language. Some papers have explored the notions of involvement and interpretation of pre-intentional communicators’ desires and interests. Originality/value There needs to be a robust discussion across carer, academic and service user communities to consider what the communication rights and needs are for people who have profound and multiple disabilities.

Purpose Bereavement and loss are key factors in poor emotional wellbeing among people with profound and multiple learning disabilities (PMLD). However, little attention has been drawn to this group in the grief and disability literature. The purpose of this paper is to make sense of bereavement and loss in people with PMLD, with reference to theoretical contributions to the field and studies of grief reactions. Design/methodology/approach A systematic review revealed 34 relevant published works. These were analysed for relevant contributions. Findings Three main types of theoretical contributions have been made; traditional grief theories, cognitive approaches and attachment-based perspectives. Although a limited number of case studies exist, a range of grief reactions have been reported in people with PMLD. Traditional grief theories and cognitive approaches are somewhat limited in making sense of grief responses in this group, while attachment-based perspectives may prove useful in providing theoretical and therapeutic direction. Research limitations/implications Further research is required to more accurately describe the nature of relationships in people with PMLD. Practical implications Major contributions to the field point to the value of facilitating engagement with the grieving process, through communication around the loss and training for staff. In addition, attachment-based perspectives are offering routes for establishing therapeutic relationships that may help to resolve behavioural difficulties. Originality/value This paper provides an overview of the perspectives within bereavement and disability, drawing together clear theoretical frameworks for future research and practice.

Purpose – The purpose of this paper is to provide some thoughts following on from reading: “Experiential learning: changing student attitudes towards learning disability”. Design/methodology/approach – This commentary outlines some considerations for the continued development of using service users in tertiary education as educators. Findings – The literature is not clear on the involvement of people with more profound and multiple learning disabilities, or for those who do not use much spoken language in tertiary level teaching. Originality/value – A further cultural shift is needed to ensure that all people with learning disabilities regardless of their communication style have the opportunity to share their experiences within a teaching and learning context.

This article describes the changes in the population of people with learning disabilities in Sheffield and the associated demand for specialist learning disability services, primary and acute health services and the wider public realm. It comments particularly on people with the most complex needs. The study to produce this data was in two parts: an analysis of changes in the overall number of people with a learning disability which included a projection of how the number might change over the next ten years, and an analysis of the health and support needs of young people with profound and multiple learning disabilities (PMLD), and how these might change in the future. The findings are compelling. The overall number of people with a learning disability in Sheffield increased by 25% in the 10 years from 1998 to 2008, the number of children and young people with a learning disability increased by nearly 120% and young people with PMLD were found to have an unprecedented level of health and social care need, which will increase further as they enter adulthood. The implications of the findings are discussed and suggestions for further research are offered.

Research confirms that children and young people with severe learning disabilities do not have the same level of access to high-quality care, health education and health promotion activities as children and young people without disabilities. This article discusses a quality improvement, action research project to investigate alternative approaches to health promotion that enhance the health and well-being of children and young people with complex neurodisabilities. The project involved assessment of school records and completion by staff of an eight-question survey. It found that the proactive approach of school nurses in raising awareness and understanding through questioning was positively received, and reinforced how meaningful and relevant information could be delivered to these young people. The project also had unexpected benefits, including more integrated team working, increased knowledge, greater awareness and understanding of the importance of health promotion participation, and student satisfaction.

This chapter describes music therapy work with adults with learning disabilities. This group of people have a cognitive disability that will not change, bringing with it challenges to living a fulfilled and satisfying life and sometimes associated health issues. A wide range of issues, from severe communication problems, bereavement, mental health problems, challenging behavior, to end-of-life issues require music therapists to bring a wide range of skills and approaches to their work. This chapter presents the diagnosis and history of this population, and the history of music therapy work in the area. The process of therapy is described, treatment models, and methods considered and clinical examples given.