Background: The objective of this study is to explore experiences of Czech mothers caring for children with profound intellectual and multiple disabilities. Methods: Semistructured interviews combined with biographical narration of mothers of children with profound intellectual and multiple disabilities and a short questionnaire for demographic…

Background: People with severe learning disabilities and complex needs are more likely to experience delayed discharge from hospital; however, there is little research into their experience in hospital and as they move out as part of the Transforming Care Programme. Methods: Six family members of people with complex needs who had moved out of…

Background: Service culture refers to the practices, views and values within service organisations. Developing positive cultures has been thought imperative to improving social care, though day services and their cultures remain an under-researched area. For many autistic people with profound learning disabilities, day services are the sites at…

It is perhaps inevitable that the academic study of learning disabilities is often undertaken by established scholars with little lived experience of the condition. So, what has it been like for someone from outside the academy, with a long career in the arts, who is also the father of a severely learning-disabled young man, to write a book-length…

Background: Persons 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. Methods: Empathy is suggested…

This paper presents the findings of an original research project commissioned by BookTrust, a respected UK charity that gifts books to children, young people (CYP) and their families. It explored the impact and modus of pleasurable engagement with books among CYP with severe and profound learning disabilities and applied a critical,…

Background: This study looked to investigate the sometimes conscious and sometimes intuitive decision-making processes of Intensive Interaction practitioners. More specifically, this study set out to develop a rich description of how practitioners make judgements when developing a dynamic repertoire of Intensive Interaction strategies with people…

Raymond, a 62 year old gentleman diagnosed with severe and profound learning disabilities, autistic spectrum disorder and severe challenging behaviour, who had lived in long stay campus-based hospital accommodation for 46 years was supported to move to a community project developed to support people to live in their own bespoke flat. This…

This is a report of a service improvement pilot project undertaken at an inpatient autism service for adults with intellectual disabilities and severe challenging behaviours. Within the service, a key facet of the care pathway was the use of a biopsychosocial case formulation. Formulation meetings were led by psychology and involved a full…

A systematic literature review was undertaken to determine the evidence base underpinning the strategy of Self Directed Support and whether evidence demonstrates that this policy is accessible to everyone with a learning disability. It also sought to identify whether there were any barriers to Self Directed Support for people with severe or…

This paper reports on the key findings from a review of the literature on future planning for adults with a learning disability who live with older parents and carers. This area has gained attention in recent years, owing to the improved life expectancy of people with a learning disability and the increasing number who now outlive their parents.…

Although there is increasing interest in service user involvement in research, such involvement rarely extends to people with profound and multiple learning disabilities. New developments in visual methodologies offer the potential for people with profound and multiple learning disabilities to be included in research. At the same time, however,…

To plan the effective delivery of local services, it is important to find out the extent to which children with learning disabilities are perceived as experiencing difficulties such as finding it hard to behave or make friends, or being overactive. Having obtained ethical approval, the Strengths and Difficulties Questionnaire was sent to 178…

People with learning disabilities have higher levels of health needs compared with the general population (Nocon, 2006, Background evidence for the DRC's formal investigation into health inequalities experienced by people with learning disabilities or mental health problems. London and Manchester, Disability Rights Commission). Research has shown…

Estimates suggest that up to one quarter of people who have a severe learning disability engage in self injurious behaviour (SIB). SIB poses serious risks, both to the person's physical health and their quality of life. Behavioural approaches have made a contribution to supporting people who engage in SIB, although the last review of these…