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Background: Related to the target group of young children with a significant cognitive and motor developmental delay, the aims of this study were to obtain more insight into (the interrelations between) several characteristics of these children's expressive communicative behaviour and to explore associations between child behaviour, partner behaviour and contextual factors. Methods: A coding scheme was specifically developed and used to code observational data of 38 children. Three different communication‐eliciting situations were video recorded. Potential communicative acts were detected, described, coded and counted within various coding categories. Data analysis mainly involved chi‐square tests in combination with Cramer's V and Friedman's two‐way analysis of variance by ranks. Findings: Potential communicative acts of young children with significant cognitive and motor developmental delay can be described in terms of focus, used modalities, level of initiative, communication complexity, signs of functionality and signs of emerging intentionality. The communicative focus of the children is mostly elicited by the prompt given by the communication partner and relates to certain behavioural modalities. Specific scaffolding behaviours of the partner are associated with the communication complexity of the children. Conclusion: This study provides some concrete suggestions on how to organise the interaction with these children. Accessible summary: This paper is about young children with significant cognitive and motor developmental delays.The communication behaviours of this group seem all to alike.We took a closer look at these children's communication behaviours and how these relate to what other people do and the context of their interactions.We found that if you describe these children's low‐level communication behaviours in great detail, interesting differences can be seen, and other people can help the children to focus on specific objects or to shift attention from an object to person they are interacting with. [ABSTRACT FROM AUTHOR]

Accessible summary • We have done research about cancer, death and dying. People with learning disabilities who had cancer were in our studies. This paper is about making sure that our research is ethical. This means that we don’t want to cause any harm (or make people upset) when we do the research. We ask: • How do we find people to be in our studies? • What should we do if people cannot understand the research they are in? • What should we do if people do not want us to use a made-up name in our writing? • What should we do if, during the research, we see that people with learning disabilities are not treated right? • What is the relationship with the researcher? Is the researcher a nurse, a helper or a friend? There has been increasing recognition of the fact that people with learning disabilities can and should be involved as active participants in research. However, in the area of cancer and palliative care, they continue to be protected and excluded from contributing to expanding our knowledge base and the shaping of care provision. This paper explores the issues involved in including people with learning disabilities as participants in research around cancer, death and dying. It stems from the authors’ own experience of conducting research around cancer and palliative care, where people with learning disabilities were the key informants. Methodological issues include the choice of methodology and problems around recruiting a sample. Ethical issues include informed consent, participants’ requests to forego anonymity, observation of sub-optimal care and issues around the boundaries between the roles of researcher and clinician. [ABSTRACT FROM AUTHOR]

Accessible summary • Using drama in research means people who communicate in different ways can take part in research. Drama was used to find out what students do in school PE and their free-time. • Students from a special school agreed to take part in the drama session. Two drama workers ran the session. • A video recorder was used to help remember what happened during the drama session. • A report was written about the drama session and presentations made to people working in schools, social services and sport. In this paper I continue to develop the growing interest in working with research approaches that enable people experiencing severe learning disabilities to participate in research activities. In particular, I discuss a research project that adopted a number of data generation strategies, including a drama pilot project. In this paper I focus on the drama pilot project by reviewing the processes involved in working with drama as a research approach. In reflecting upon the use of drama I explore a number of issues concerning the process of transcription and the competing discourses of research and engaging in a creative performance. Although I identify a number of challenges encountered in this drama pilot I would argue that this technique remains a worthwhile and relevant strategy for engaging with many students, including those experiencing severe learning disabilities. [ABSTRACT FROM AUTHOR]

Accessible summary •We are people with and without learning disabilities doing research together. •In this paper we talk about the good bits and the bad bits of doing research together. In our paper we talk about what it is like to be a group of people with and without learning disabilities researching together. We describe the process of starting and maintaining the research group and reflect on the obstacles that we have come across, and the rewards such research has brought us. Lastly we put forward some ideas about the role of professionals in such a group that we hope people might find useful. [ABSTRACT FROM AUTHOR]

Accessible summary •Many people with learning disabilities have pain that never goes away. This is called chronic pain. •Lots of work has been done on chronic pain for people without learning disabilities, but not much is known about how to help people who have learning disabilities and chronic pain. •This paper looked at what helped people without learning disabilities to live with chronic pain and adapted it to be used for people with learning disabilities and chronic pain. •This paper found that it helped one woman and so it describes what was done so other people can use the same ideas in the future. Chronic pain is a prevalent, under-diagnosed problem in the learning disability population. This is in part due to communication problems, unrecognized pain behaviours and the effects of medication. As a consequence, chronic pain often goes untreated and causes ongoing distress. This paper initially describes the main research that has been carried out into learning disabilities and chronic pain management and then goes on to detail the case of a 32-year-old woman with mild–moderate learning disabilities who has been suffering from chronic pain for 16 months. A multi-modal and multidisciplinary assessment was carried out to explore the physical and psychological underpinnings of her pain and its impact on her quality of life. A cognitive-behavioural pain management intervention was developed by adapting a manual for non-learning disabled adults to meet the physical, social and cognitive needs of the client. Sessions were carried out once a week for 4 months and improvements were reported in the level of pain intensity, levels of anxiety and depression and the range of activities she took part in. [ABSTRACT FROM AUTHOR]

Accessible summary • Listening to what young people with severe learning disabilities have to say about inclusion is important. • Researchers must be prepared to use a range of resources to facilitate communication. • Resources must be appropriate and familiar to the individual. This paper describes the evaluation of a drama production which involved 6 young people with profound and complex learning needs and 23 pupils from a mainstream school. The young people worked together on the project for nearly 2 years. At the end of the project we wanted to find out what the young people with disabilities thought of the inclusion project. Very often, the thoughts of young people with learning disabilities are not included because professionals do not have the resources or experience to conduct the interviews. This paper explains how the interviews were arranged, what tools were used and finishes with two case studies which are examples of what the young people thought. This research demonstrates that young people with severe learning disabilities have important messages to tell us about their experiences of inclusion. This paper gives examples of how we can enable young people with severe learning disabilities to express their views. [ABSTRACT FROM AUTHOR]

This paper is about my job as a research supporter. I was part of a team, with three people with learning difficulties. They had paid jobs as researchers. The project was at a People First organisation, and it was about direct payments.These are the things I tried to do in my job:It is not always easy to do these things. The supporter needs to learn how to step back, and find ways for researchers with learning difficulties to do things for themselves.It is important that people with learning difficulties know how powerful they can be when they are doing research.People First organisations need to decide for themselves about the research they may want to do.Thank you to CHANGE for the use of pictures from their PictureBank. In a previous article [Brit J Learn Disabil27: 48–51], entitled‘Researching Together’, I described the process by which a team of People First researchers and myself worked together on a small-scale project in Bristol. The project was started by self advocates, and followed their own ideas, although they had support. Walmsley refers to it [Disabil Soc16: 198] as a‘team approach, rather than one where the people with learning disabilities are in charge’, admitting that the title‘Researching Together’ led her to this conclusion. My basic aim in writing this sequel, then, is to consider the notion of‘together’. Is the equation of togetherness about equal roles, or does it automatically imply that one partner is more powerful than the others? This is a practice paper, which offers some analysis of our own experiences in a large-scale, funded research project, in which the self advocates had paid employment as researchers. All members of the team can contribute to this kind of reflexivity. The article concludes that inclusive research is something new, with its own hallmarks and styles. The research supporter has to remain aware of the potential power in her own role, and to be prepared to divest herself of that power and to step back, so that People First members take control of the process of research. [ABSTRACT FROM AUTHOR]

This paper explores the use of disposable cameras and Talking Mats as research tools to access the views of young people with learning disabilities about their social activities. A pilot study was carried out with nine 16-year-old young people in a special school. They were given a single-use motorized camera. This was used to record the out-of-school activities they participated in, both in the home and community, for 1 week. The young people were asked to sort their photographs using Talking Mats symbols. This was followed by parental interviews to check for validity and reliability. The paper reports on the potential use of photography and Talking Mats as research tools with young people with learning disabilities, and how their use may break down some of the language barriers inherent in traditional interview methods. The author discusses some of the practical and methodological issues arising from the study. [ABSTRACT FROM AUTHOR]

Accessible summary • Many people with learning disability have poor health, compared with other people. • Each person taking part in this study told their health story and set themselves health targets. • Some of the things they learnt were: what to do when they are in pain; how to make appointments with the doctor; and how to make their needs clear when they are in the doctor’s surgery. • This research is important in helping people feel more confident when they visit their doctor, and in making it more likely that they are able to stay healthy. • The health of people with learning disabilities is poor when compared with the general population but this difference is not reflected in higher rates of access to primary healthcare. • This paper will report on a study undertaken to run and evaluate a 12-week programme to enable people with learning disabilities to better access primary healthcare. • The importance of this research lies in the successful outcomes achieved, and in the distinctive properties of the programme, which used practice-based groups, and focussed on the development of health skills as well as health knowledge. [ABSTRACT FROM AUTHOR]

Accessible summary Leaving school can be difficult for many young people with learning disabilities. We wanted to know how teachers and support workers work together to make leaving school easier for young people with learning disabilities. Also, what do teachers think should be the next step for young people? Many young people want a job but when we asked teachers and support workers they said most people go to college and do not get a job. We asked teachers why this happens. The paper reports the findings of a study of professionals in strategic and operational positions who were involved in transition planning for young people with learning disabilities. Respondents were asked to comment on what they regarded as the optimal aim and outcome of transition from school to post-school placements. The results illustrate the problems and advantages of inter-agency partnerships in delivering meaningful post-school destinations for young people leaving school. [ABSTRACT FROM AUTHOR]

Accessible summary • As people get older, many are not able to move as quickly as they used to and many find it harder to think about how to sort their problems. • Sometimes people develop what is called dementia. If someone has dementia then you may notice changes in their memory or how they behave. • There are a few kinds of dementia – one is called Alzheimer’s dementia; another is called vascular dementia; another is called Lewy Body dementia. • If people have these illnesses they find that gradually they are not as able to do the things they used to. They may forget more things like people’s names or how to make their tea. • There are other illnesses that can look a bit like these dementia illnesses and sometimes it is hard to tell if someone has a dementia illness or if they have some other illness instead of or as well as the dementia. • Many of these illnesses can be helped with medicine or with the right sort of support so it is important to sort out just what it is that is making the problem for the person. • If someone really does have a dementia illness then staff members need to know this so they can help the person. Sometimes this means moving into a different house or having different staff members who understand the difficulties. • Sometimes it is hard to find the right place for a person to live. This is because if they have dementia, then as they get older they may need more and more help. • The man in this paper was not able to speak to people but the writer used something called Talking Mats. When there is an important time in their life when they have to choose what they would like to do, Talking Mats is a way to find what a person wants without them speaking, by using pictures. Assessment for a diagnosis of dementia is hard enough under the best possible conditions. There are possible alternative or concomitant diagnoses, such as depression, to consider. However, when the possible dementia concerns a gentleman with severe learning disabilities and with a severe communication disorder then this assessment becomes even more difficult. Still more complications may arise from practical pressures such as general changes in health and hence of support needs; changes in support staff; what housing options are available at the time; and what options are or may be available in anticipation of future needs. This brief case-study highlights the difficulties and competing pressures that complicate further just such a differential diagnosis. [ABSTRACT FROM AUTHOR]

Accessible summary • Many parents with learning with learning disabilities have their children taken away. • Advocates help parents with learning disabilities understand what is happening and to get their voice heard. • Advocates should know how to work with people with learning disabilities and know about the child protection system. The child protection system happens when others think that parents aren’t looking after their children well enough. Parents with learning disabilities frequently become involved with child protection and judicial proceedings. Parents report not understanding and being disempowered by the child protection system. This paper presents fourteen parents’ views regarding how two specialist advocacy services supported them during child protection. The parents believed that they were treated with more respect by child protection professionals when their advocate was with them. They reported being able to understand the child protection process and have their voice heard. The parents also praised their advocates for the emotional support they provided them and the way in which they were able to challenge child protection professionals’ practice because of their advocates’ experience in child protection. The advocates were supporting parents according to the guidance regarding supporting parents involved in child protection. They used strategies common to advocates working with adults with learning disabilities. The development of specific advocacy services supporting parents with learning disabilities should be supported. [ABSTRACT FROM AUTHOR]

The White Paper ‘Valuing People’ [ Department of Health (DoH) (2001) Valuing people: a new strategy for learning disability for the 21st century, London, HMSO] indicates that people with a learning disability need to become more actively involved in the decisions that affect their lives. This includes being offered active choices in access to health services. Psychologists, therefore, need to think about how to give people with learning disabilities enough relevant information in an accessible way to promote informed consent to treatment. This study investigates how much information adults with mild and moderate learning disabilities understand about psychology services, before and after watching a video designed to explain what seeing a psychologist entails. The video was shown to 19 participants at a local Social Education Centre. Participants’ knowledge increased significantly after watching the video. They were able to answer questions about its content better when asked after short sections of the video when presented, rather than after an uninterrupted presentation. [ABSTRACT FROM AUTHOR]

This paper presents the stories of three mothers with learning difficulties whose children have been involved in care proceedings. Drawing on the example of the legendary interviewer, Studs Terkel, the authors let the mothers describe their experiences of the child protection system in their own words. From out of their intensely personal accounts comes a political narrative about the role of the state in the policing of marginalized and vulnerable families. [ABSTRACT FROM AUTHOR]

The purpose of this paper is to present a model of practice termed ‘Network Training’ which describes a structured approach to working with the network of support around an individual with learning disabilities. Within learning disability services there are many contexts in which the support system has opportunities to come together. For example, care management review meetings; person centred planning meetings and a multitude of clinical and service forums. However, each would have its own purpose and agenda ultimately impacting on the extent to which people within to system can contribute to resolving issues pertinent to the person with learning disabilities. We describe a model of practice we have developed over several years. Systemic theory has influenced the way in which we practice. Using a case example, a model of the Network Training process is outlined. Reference is made to the role of the facilitator and the authors’ clinical experiences of using this approach. Issues of evaluation are also discussed. [ABSTRACT FROM AUTHOR]

This paper describes the use of a new project, ‘from the inside looking out’ (FILO) (N. Richardson Unpublished data), to develop communication, interaction and emotional literacy skills with people with profound and multiple learning disabilities. The authors utilized tools derived from Intensive Interaction Therapy [D. Hewett & M. Nind (1994) Access to communication. London, David Fulton Publishers; D. Hewett & M. Nind (1998) Interaction in action: reflections on the use of Intensive Interaction. London, David Fulton Publishers] and applied these within a FILO paradigm to run an 8-week group with five participants where the aim was to build relationships and enhance awareness of emotional variables. The results were measured using both quantitative and qualitative analysis and it was found that a number of discreet observable behaviours related to interactive ability were positively changed across all participants. Important processes within the group are analysed and recommendations for expanding this approach in the future are discussed. [ABSTRACT FROM AUTHOR]

The need for specialized treatment programmes to address the specific requirements of different populations has been well recognized. One important area of treatment development has been for offenders who are unsuitable for existing mainstream treatment programmes. This paper describes the process of adapting an existing sexual offender treatment programme for use with sexual offenders who have special needs in an Australian correctional setting. The population comprised individuals with a variety of special needs including borderline or mild intellectual functioning, severe literacy problems, significant communication difficulties, and other important deficits and special needs. It should be noted that some of these special needs individuals would not meet the diagnostic criteria for intellectual disability and this programme is aimed at the broader group inclusive of a number of special needs. Therapeutic adaptations have been guided by current research and practice, and specific examples are described and discussed. The authors believe that these adaptations may also have some utility for mainstream sexual offender treatment programmes. Research into the efficacy of these treatment adaptations with this population is currently underway. [ABSTRACT FROM AUTHOR]

The paper reports on the development and piloting of the Social Inclusion Interview Schedule (SIIS). This uses pictures to explore social networks and feelings of social inclusion. The background, conceptual framework and development of the interview schedule are discussed and interim findings are highlighted. The challenge of not just identifying the constituents of a social network but also attributing some measure of intensity to the relationships and activities identified will be considered. The study site is Bradford in the UK and the study population are young people with learning disabilities and their carers. There is a specific focus on people from the South Asian community resident in the city. [ABSTRACT FROM AUTHOR]

Studies have indicated that people with learning disabilities have few friends. Making friends requires both opportunities and skills. This paper focuses on the development of skills in order to facilitate friendship; an area that has received limited attention in the literature. Traditional social skills approaches are considered briefly, before moving on to discuss peer-mediated approaches. Peer-mediated approaches appear promising, with positive changes in the social behaviour of children with disabilities reported. It appears few studies have directly investigated maintenance, and evidence of generalization is limited. Factors that may improve generalization and maintenance are discussed. Finally, consideration is given to whether peer-mediated approaches actually facilitate friendship, rather than simply increasing interaction. [ABSTRACT FROM AUTHOR]

People with learning disabilities who are unable to speak are often excluded from research. Techniques to support interviewing, such as Talking Mats, can help to improve the quality of research in which such people could not otherwise participate. Talking Mats, in common with many techniques which augment communication, relies on someone else selecting the vocabulary to be made available. This paper outlines the Talking Mats framework, and discusses various methods of vocabulary selection. In particular it reports on empirical work with two effective communication aid users, who were invited to advise on vocabulary. It is proposed that many of the difficulties of research involving people with limited communication, can be ameliorated by viewing the process of accessing their views not as a one off event, but as an ongoing process. [ABSTRACT FROM AUTHOR]

Although it has been suggested that about 2.5% of the population as a whole should be regarded as having a mild-to-moderate learning disability, only about 0.25% of the population is registered as having a learning disability. This paper considers why this disparity exists. It is suggested that although 2.5% of the population may be a good estimate for people with IQs less than 70, a better estimate of the proportion of the population who reach a dual criteria of having both a low IQ and social/skill defects is about 1%. It is pointed out that even if true prevalence rate of learning disability is nearer to 1% rather than 2.5%, services still only know of a small proportion of people who could be considered to have a learning disability, and there are probably a large number of people with unidentified learning disabilities. It is also noted that the term ‘learning disability’ can be very confusing as it is not clear if it refers to people who have IQs below 70, people with both intellectual and adaptive disabilities or people who have been given a learning disability label. The implications of this for services and research are discussed. [ABSTRACT FROM AUTHOR]

Although predisposing and facilitating factors for delirium are common in learning disabled patients, little is known about the occurrence of delirium in these patients. This paper presents three case reports and results of a manual and computer (Medline, Embase Psychiatry) search. In the literature only two case reports of delirium in learning disabled patients were found. These data were added to those of our three cases. The respective age of the patients was 16, 17, 51, 55 and 78 years. Delirium was associated with eye surgery, anticholinergic overdose, urinary infection, Alzheimer's disease and pulmonary infection, respectively. All patients had predisposing factors for delirium. The literature on delirium in learning disability is scarce. A reason for this may be that the diagnosis is often missed. Delirium is very distressing and raises morbidity and mortality. However, it is treatable, so more attention should be given to diagnosis and treatment, especially in these vulnerable patients. A practice guideline for the assessment and treatment of delirium in learning disability is given. [ABSTRACT FROM AUTHOR]

This paper overviews the phenomena of social stories in conveying social messages to children with autistic spectrum disorder and learning disabilities. The use of social stories in a clinical psychology service for children with predominantly severe learning disabilities is discussed. A case study is presented describing the use of a social story as part of a conventional behavioural intervention on a boy presenting problems surrounding sleep behaviours. [ABSTRACT FROM AUTHOR]

Learning disability nursing has had an interesting history over recent decades. Despite many predictions of it being replaced it has survived to engage in a variety of roles in contemporary learning disability services. This paper acknowledges the anomalous position of the profession and discusses its current position within nursing, and within learning disability services. [ABSTRACT FROM AUTHOR]

In this paper, the role of the nondisabled researcher who supports inclusive research in learning disability is explored. The author argues for more transparency about the role in order to highlight the challenges of working inclusively on research projects, the real contribution of people with learning difficulties to research, and the training/support implications of working inclusively. [ABSTRACT FROM AUTHOR]

This paper outlines the development of the sociocultural study of people with an intellectual disability, focusing in particular on the pioneering work of Robert Edgerton, Robert Bogdan and Steven Taylor, David Goode and John Gleason. As part of this analysis, I shall critically assess the contributions and limitations of these authors. I argue that the parameters of the debate have tended to become too rigid. The sociocultural study of intellectual disability has mostly focused on the experiences of people with mild intellectual disabilities, extrapolating from these experiences conclusions about the nature of intellectual disability in general, while the experiences and life worlds of those whose impairments are severe, profound, and often multiple, are often ignored. However, the portrayal and analysis of such people's lives are essential for our greater understanding and appreciation of intellectual disability, and of human difference in all its diverse manifestations. It is also essential for understanding, accepting and respecting people with severe and profound intellectual disabilities, and recognizing that such people are already living socially meaningfully lives as they are, despite not conforming to the dominant and socially prescribed norms and expectations of meaningful action and behaviour. The methodological and theoretical tools that are required to engage with and interpret such lives, however, are profoundly different to those used by the majority of sociocultural theorists in the field, as shall be discussed below. [ABSTRACT FROM AUTHOR]

A wide range of prevalence rates of psychiatric disorders in people with learning disabilities has been reported, and as yet, there appears to be no general consensus on how to improve the process of diagnosis in order to achieve better agreement. Distinguishing behavioural disturbance from psychiatric disorders is clearly problematic, and empirical and conceptual issues concerning the nature of these disorders brings into question the validity and reliability of psychiatric diagnosis in people with learning disabilities. Concern has been widely expressed about the high frequency with which psychotropic medication is prescribed to this client group. The present paper reviews some of the recent literature, and questions whether psychiatric diagnosis and the use of psychotropic medication are sufficiently evidence-based to be justified practice. [ABSTRACT FROM AUTHOR]