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Ryan, Karen; Guerin, Suzanne; Dodd, Philip; McEvoy, John
doi: 10.1111/j.1468-3156.2010.00662.xpmid: N/A
Accessible summary • People with intellectual disabilities are living for longer than ever before and are experiencing the deaths of their friends and other service users. • This study describes the experiences of people with intellectual disabilities who have lived through the death of a friend or service user from the point of view of staff from intellectual disability and palliative care services. • It is important to understand the experiences of people with intellectual disabilities to try and help people cope with the deaths of their friends. • The study shows that it helps to include people with intellectual disabilities when their friends become unwell and to talk openly with them about what is happening. Summary Research is lacking on the effect of the deaths of fellow service users on people with intellectual disabilities. This qualitative study formed part of a project which aimed to describe the provision of palliative care to people with intellectual disabilities in Ireland and to assess the population’s palliative care needs. We report on findings from 16 focus groups held with staff in which participants described their perception of the experiences of people with intellectual disabilities when other service users die. Interviews were analysed using Framework Analysis. The findings highlight the emotional impact of the death of a friend on people with intellectual disabilities. Situations where staff facilitated the involvement of services users are described, and the study points to the benefits of this approach. Possible barriers to involvement are highlighted. The findings affirm the importance of ensuring that people with intellectual disabilities have a good understanding of the concept of death to alleviate the bereavement experience.
doi: 10.1111/j.1468-3156.2010.00663.xpmid: N/A
Accessible summary • Many people want to make sure that all people with intellectual disability are safe from harm. • This report shows that some staff find it hard to say why they feel people with intellectual disabilities need to be protected. • Sometimes care staff feel they can stop people with intellectual disabilities doing the things they want to because the staff are frightened those people may be harmed or hurt. Summary Protection of those deemed vulnerable has received increasing attention since 2000. This article reports on care staff views of vulnerability using original data from a research study (Parley. Vulnerability and abuse: an exploration of views of care staff working with people who have learning disabilities, PhD Thesis, 2007) in which care staff views relating to vulnerability and abuse of adults with learning disability were explored. Using semi‐structured interview informants perspectives were explored. The results revealed that most informants felt that people with learning disabilities are all vulnerable and that this definition allows staff the authority to take protective measures to ensure their safety. This desire to introduce protective measures however may result in people with learning disabilities being denied the right to self‐determination, thereby limiting their enjoyment of some life experiences and lessening the excitement of life that others take for granted.
Greenhill, Beth; Whitehead, Richard
doi: 10.1111/j.1468-3156.2010.00664.xpmid: N/A
Accessible summary • When people are risk assessed, they are sometimes denied their human rights. • In this paper, we say that if we balance the human rights of service users, their carers and people in their community we can manage risk much better. • This means that people who use services are involved in their own risk assessments. • It also means people’s human rights are looked at in the way they are supported. Summary Recent reports highlight the extent to which many people with learning disabilities are not afforded access to their basic human rights. In addition, traditional approaches to risk management often focus on professional assessments of risks and challenging behaviour and exclude service user perspectives. In this paper, we outline what we believe to be the key principles of a human rights‐based approach (HRBA) to risk assessment and management. We argue that if we balance the human rights of service users, their carers and members of their communities, we can, in effect, manage risk within a much more positive paradigm. A HRBA to risk emphasises service user inclusion, recognises the impact of diverse identities on risk behaviours and makes the human rights in risk management decisions explicit. We believe a human rights approach offer a coherent unifying framework for much current best practice; prompting all involved to design proactive, proportional risk management strategies which balance the rights involved in the person’s risky behaviours with the rights involved in the management strategy. The tools we have developed within our service, structuring a HRBA to risk assessment and management, are briefly presented. Case examples are included to illustrate key points.
Brewster, Stephanie; Coleyshaw, Liz
doi: 10.1111/j.1468-3156.2010.00665.xpmid: N/A
Accessible summary • This article is about research which asked children and young people with autistic spectrum disorder what they like to do in their leisure time. We also asked what activities they would like to do but cannot. The children told us their views using whatever ways to communicate they preferred. • Younger children liked to play with friends, go swimming, bowling and other activities with their parents. Older children liked to stay at home and use the Internet. Joining in with leisure activities seemed to be harder for these children than for those without autism. • The children and young people told us what prevented them from joining in with leisure activities. Children wanted to feel safe and did not like people being unfriendly towards them. This put the older children off going outdoors. • This research is important as children with ASD are often not asked what they think about things especially if the children have difficulties communicating in an ordinary way. Summary The importance of active participation in leisure activities for everybody is identified by Carr (2004) but issues around leisure in the lives of children with disabilities have received little recognition. The experience of children/young people (henceforth referred to simply as children, for brevity) with autistic spectrum disorders (ASD) in accessing and engaging in leisure pursuits is particularly lacking in the literature. This article describes a small‐scale investigation of the views of children and young people with ASD around their access to leisure activities. The distinctive range of impairments characteristic of ASD is discussed in terms of their impact on the child’s possibilities for accessing this area of life. Findings indicate the significant challenges these children face in achieving an active and varied life outside of school and home environments. The importance and also the challenge of consulting with children with disabilities are discussed.
Leeds, Lesley; Srinivasan, Janaki
doi: 10.1111/j.1468-3156.2010.00666.xpmid: N/A
Accessible summary • People with a learning disability are at special risk of developing certain problems with their health. A stroke can also happen to people with a learning disability. • It can sometimes be difficult to tell whether someone has had a stroke, especially if they seem well. Sometimes, people can develop mental health problems after a stroke. • It can be difficult for professionals to understand what has happened to the person, and certain tests, such as a brain scan, need to be carried out to work out what is wrong with the person. • We talk about the importance of getting to know the person well to help understand what their problems are and how to treat the problems. This is to make sure that they get the right diagnosis and treatment. Summary People with a learning disability are just as likely as people in the general population to be at risk of cerebrovascular disease, due to the presence of undetected/undertreated vascular risk factors. When people with a learning disability are presenting with additional cognitive impairment, it is important to consider a range of conditions that may account for this. Stroke is a major cause of cognitive impairment in older people, affecting at least one‐third of stroke survivors (Leeds 2001). However, post‐stroke psychosis is rare following stroke, and, as can be seen from the case of ‘May’, individuals can make a good recovery with appropriate assessment and intervention. It is important that a diagnosis of dementia is given only after all other potentially treatable conditions have been excluded, and there is a stepwise global deterioration without any other explanation.
Rae, Helen; Murray, George; McKenzie, Karen
doi: 10.1111/j.1468-3156.2010.00667.xpmid: N/A
Accessible summary We looked at how much teachers knew about helping children with a learning disability who had behaviour that was challenging in school. We found that: • Some teachers knew very little about challenging behaviour and all the different ways to help children with this. • Some teachers had beliefs about challenging behaviour that can be unhelpful. We need to find ways to help teachers find out more about challenging behaviour and to think about it in different ways. One way to do this could be to give them training about it. Summary The present study examined Scottish teaching staff knowledge about the definition and management of challenging behaviour displayed by children with an intellectual disability. Knowledge levels were relatively low, and participants were most likely to define challenging behaviour by function or topography. Teaching staff were largely unaware of positive programming strategies, suggesting that they may not be properly equipped to manage challenging behaviour effectively in the longer term. The teaching staff were found to hold attributions which research suggests are associated with reduced helping behaviour and increased anger. This indicates a continuing need to identify effective ways of promoting more accurate knowledge and positive attributions in teaching staff.
Bentley, Sarah; Nicholls, Rickie; Price, Maxine; Wilkinson, Aaron; Purcell, Matthew; Woodhall, Martin; Walmsley, Jan
doi: 10.1111/j.1468-3156.2010.00668.xpmid: N/A
Accessible summary • This paper is about an oral history project to find out about long‐stay hospitals in their local area carried out by a group of young people with learning disabilities. • It describes how they went about the project and made a film, and what they learnt through doing it. Summary We are five young people with learning disabilities who found out about the history of hospitals for people with learning disabilities in our area, and made a film about the project. The project taught us what life had been like for some people with learning disabilities only 30 years ago. It was very different to our lives; we have more choice, more freedom and more opportunities. As part of the project, we learnt how to ask questions, to listen, to record information and to produce a film.
doi: 10.1111/j.1468-3156.2010.00670.xpmid: N/A
Accessible summary • People with Down syndrome can have problems with the way they think, feel, and act. • Those who help people understand these difficulties need to have information about the factors that can contribute to such problems. • This knowledge is important so difficulties can be found early, and help given. Summary The dual disability literature is marked by a lack of reviews with respect to assessment of specific aetiological groups. The current review summarises the wide body of literature relevant to the assessment of psychiatric and behavioural problems in people with Down syndrome. Adequate assessment within this population requires knowledge, not only of epidemiological findings with respect to psychiatric and behavioural problems, but also an understanding of other important areas including psychometrics, neurocognitive functioning, dementia and other medical issues. These areas are reviewed, and directions for future research are proposed.
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