How far are people with learning disabilities involved in funeral rites?

Many referrals to specialist learning disability services follow bereavement and loss experiences. Research and clinical experience both suggest that people who have not been fully involved in funeral rituals have delayed and/or prolonged grief reactions. This study in a multicultural inner London borough examined local religious and cultural practices following bereavement of people with learning disabilities. Interviews were sought with funeral directors and representatives from six religious groups to build up a picture of local practice, resources and knowledge, particularly with regard to how people with learning disabilities are involved in the process. It was found that most of the local funeral directors had little direct experience of people with learning disabilities. The religious group representatives who were interviewed also spoke of a lack of involvement of people with learning disabilities. A pamphlet has been designed for funeral directors and religious groups to give to families or friends of people with learning disabilities who have been bereaved.     

Diagnosis and drugs: help or hindrance when people with learning disabilities have psychological problems?

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.     

Putting words into their mouths? Interviewing people with learning disabilities and little/no speech

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.     

‘Why are my friends changing?’ Explaining dementia to people with learning disabilities

There are many publications that seek to explain the causes and effects of dementia for the non‐learning disabled population and there is evidence of the benefit of supporting carers and of establishing support groups. However, there is much less published material aimed at people with learning disabilities, and little focus on the specific needs of people who share their homes and lives with other people with learning disabilities who develop dementia. This article is based on group work with residents who had expressed bewilderment at the gradual changes they were witnessing in two of their housemates with dementia with whom they had shared a home and friendships over many years. Employing a wide range of visual aids, equipment, role plays and exercises, we sought to make the explanation of dementia as accessible and concrete as possible. The group also provided a forum for the residents to talk about the effects of living with others who develop dementia. Evaluation showed how a relatively short intervention can result in positive changes for both the people with learning disabilities who develop dementia and their peers.     

Does choice influence quality of life for people with mild intellectual disabilities?

Consumer choice is a key concept in developmental disability intervention, but relatively little quantitative research has focused on the relationship between choice and quality of life. This study used data from Washington state's Division of Developmental Disabilities 2002 National Core Indicators study (Human Services Research Institute, 2001a, 2001b) to examine the relationship between choice and 3 quality-of-life indicators: community inclusion, rights, and opportunities for relationships. Consumers (N = 224) with mild intellectual disabilities participated in the study. Structural equation modeling was used to assess the influence of type of living arrangement and choice on quality of life. Consumers who lived in the community and made more choices had higher scores on quality-of-life indicators. The findings have implications for disability policy, practice, and future research.     

Physical activity and nutrition health promotion interventions: what is working for people with intellectual disabilities?

A scoping review of studies on physical activity and nutrition health promotion interventions for individuals with intellectual disabilities was conducted. Searches included MEDLINE, PsycINFO, and CINAHL databases from 1986 through July 2006. The final number included 11 articles comprising 12 studies. Generally, this review indicated some evidence for fitness and psychosocial benefits of community-based physical activity and exercise programs for adults with intellectual disabilities. When combined with a more comprehensive health behavior education program incorporating exercise and nutrition information, some evidence exists for reductions in weight.     

Do people with mental illness deserve what they get? Links between meritocratic worldviews and implicit versus explicit stigma

Meritocratic worldviews that stress personal responsibility, such as the Protestant ethic or general beliefs in a just world, are typically associated with stigmatizing attitudes and could explain the persistence of mental illness stigma. Beliefs in a just world for oneself (“I get what I deserve”), however, are often related to personal well-being and can be a coping resource for stigmatized individuals. Despite these findings in other stigmatized groups, the link between worldviews and the stigma of psychiatric disorders is unknown. We measured just world beliefs for self and others as well as endorsement of the Protestant ethic in 85 people with schizophrenia, schizoaffective or affective disorders and 50 members of the general public. Stigmatizing attitudes toward people with mental illness (perceived responsibility, perceived dangerousness, general agreement with negative stereotypes) were assessed by self-report. Using a response-latency task, the Brief Implicit Association Test, we also examined guilt-related implicit negative stereotypes about mental illness. We found a consistent positive link between endorsing the Protestant ethic and stigmatizing self-reported attitudes in both groups. Implicit guilt-related stereotypes were positively associated with the Protestant ethic only among members of the public. Among people with mental illness, stronger just world beliefs for self were related to reduced self-stigma, but also to more implicit blame of persons with mental illness. The Protestant ethic may increase (self-)stigmatizing attitudes; just world beliefs for oneself, on the other hand, may lead to unexpected implicit self-blame in stigmatized individuals. Public anti-stigma campaigns and initiatives to reduce self-stigma among people with mental illness should take worldviews into account.     

How to improve sharing and application of knowledge in care and support for people with intellectual disabilities? A systematic review

Background

To optimise care and support for people with intellectual disabilities (ID), sharing and application of knowledge is a precondition. In healthcare in general, there is a body of knowledge on bridging the ‘know‐do‐gap’. However, it is not known to what extent the identified barriers and facilitators to knowledge sharing and application also hold for the care and support of people with ID, due to its specific characteristics including long‐term care. Therefore, we conducted a systematic review to identify which organisational factors are enabling and/or disabling in stimulating the sharing and application of knowledge in the care and support of people with ID.

Method

A systematic review was conducted using five electronic databases of relevant articles published in English between January 2000 and December 2015. During each phase of selection and analysis a minimum of two independent reviewers assessed all articles according to PRISMA guidelines.

Results

In total 2,256 articles were retrieved, of which 19 articles met our inclusion criteria. All organisational factors retrieved from these articles were categorised into three main clusters: (1) characteristics of the intervention (factors related to the tools and processes by which the method was implemented); (2) factors related to people (both at an individual and group level); and, (3) factors related to the organisational context (both material factors (office arrangements and ICT system, resources, time and organisation) and immaterial factors (training, staff, size of team)).

Conclusion

Overall analyses of the retrieved factors suggest that they are related to each other through the preconditional role of management (i.e., practice leadership) and the key role of professionals (i.e. (in)ability to fulfill new roles).