Parallel stigma? Nurses and people with learning disabilities

The present paper discusses the history of learning disability nursing in the context of its development within the nursing profession and its relationship with people with learning disabilities. The study provides a brief sketch of the development of learning disability nursing as a discrete branch of the nursing profession before exploring its history in the light of theories of marginalization and stigma. Although the present author recognizes the profound differences between the history of people with learning disabilities and those paid to care for them, he seeks to establish some common ground on the basis of parallel stigma.     

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.     

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.     

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.     

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.     

Day services for people with mental handicaps: A PURPOSE IN LIFE?

There is a continuing debate about the future of day services for people with mental handicaps. In this study people who attended adult training centres were interviewed to ascertain their views on their day placements. They were glad to have somewhere to go during the day and enjoyed elements of the daily programmes. However, most people felt that in the long-term the services did not make a positive contribution to their lives and wished for ordinary jobs.     

Domiciliary and day care services: Why do people with dementia refuse?

Objective: To explore the reasons given for refusal of day services, and to examine the relationship between willingness to accept day services and clinical variables.

Method: Fifty people with dementia who lived alone and had refused day services were interviewed.

Results: The most common reasons for reluctance to attend day services were the belief that they did not need day services, that they liked being on their own, and the belief that they would not enjoy it. People who persistently refused day services tended to have additional worries about meeting new people, losing their independence and being institutionalised. Fifty-four per cent of people with dementia who lived alone and had refused day services scored six or more on the Cornell Scale for Depression in Dementia, suggesting possible presence of major depression.

Conclusion: In patients with dementia who live alone and refuse day services, their misconceptions about day services and possibility of undiagnosed depression need further exploration.     

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).