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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 •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]

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]

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 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]