Journal of intellectual disability research : JIDR
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J Intellect Disabil Res · Dec 2012
Learning Disability Liaison Nursing Services in south-east Scotland: a mixed-methods impact and outcome study.
There have been significant concerns about the care and treatment of people with intellectual disabilities (ID) when attending general hospitals, which have led to inquiries that highlight service and systems failures. One response has been the development of Learning Disability Liaison Nursing (LDLN) Services across the UK that aim to ensure that additional, specialist support is available for patients, their carers and general healthcare professionals. ⋯ The LDLN Services were valued by stakeholders by achieving person-centred outcomes. With their expert knowledge and skills, the liaison nurses had an important role in developing effective systems and processes within general hospital settings. The outcomes highlight the importance of supporting and promoting LDLN Services and the challenges in delivering the multifaceted elements of the role. There is a need to take account of the complex and multidimensional nature of the LDLN role and the possible tensions between achieving clinical outcomes, education and practice developments and organisational strategic initiatives.
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J Intellect Disabil Res · Nov 2012
Historical ArticleThe human rights context for ethical requirements for involving people with intellectual disability in medical research.
The history of ethical guidelines addresses protection of human rights in the face of violations. Examples of such violations in research involving people with intellectual disabilities (ID) abound. We explore this history in an effort to understand the apparently stringent criteria for the inclusion of people with ID in research, and differences between medical and other research within a single jurisdiction. ⋯ Stringent ethical requirements are likely to continue to challenge researchers in ID. A human rights perspective provides a framework for engaging both researchers and vulnerable participant groups.
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J Intellect Disabil Res · Nov 2012
Protection, participation and protection through participation: young people with intellectual disabilities and decision making in the family context.
Research suggests that persons with intellectual disabilities (ID) are expected to be more compliant than persons without disabilities and that expectations for compliance begin in childhood. No study, however, seems yet to have included a primary focus on the participatory rights, or rights to express opinions, desires and preferences and to be heard and taken seriously in decision making among young people with ID who are not yet considered legally adult. The purpose of the two current studies was to explore how the right to participation is negotiated for young people with ID in a family context and to determine family members' recommendations for strategies to facilitate the participation of young people with ID. ⋯ Although young people with ID may make fewer independent decisions about their lives than typically developing peers, support in decision making can enable both increased protection and independence.
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J Intellect Disabil Res · Sep 2012
Health professionals' attitudes and emotions towards working with adults with intellectual disability (ID) and mental ill health.
Mainstream mental health services are providing more care for individuals with an intellectual disability (ID); this has implications for staff and service users. Attitudes of staff towards people with ID in mental health services may be negative and negative staff attitudes may have a detrimental impact on service provision. ⋯ The research suggests that numerous factors, including the role of emotional experience and a number of environmental aspects, need to be considered in the context of providing mental health services to adults with ID to ensure the highest quality. Research limitations and clinical implications of the study are also considered.
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J Intellect Disabil Res · Mar 2012
Comparative StudySocial impairments in Rett syndrome: characteristics and relationship with clinical severity.
While behavioural abnormalities are fundamental features of Rett syndrome (RTT), few studies have examined the RTT behavioural phenotype. Most of these reports have focused on autistic features, linked to the early regressive phase of the disorder, and few studies have applied standardised behavioural measures. We used a battery of standardised measures of behaviour and functioning to test the following hypotheses: (1) autistic behaviour is prominent throughout childhood in RTT; (2) autistic features are more salient in individuals with milder presentation; (3) severity of autistic behaviour is associated with a wider range of behavioural problems; and (4) specific MECP2 mutations are linked to more severe autistic behaviour. ⋯ Our data suggest that in RTT, autistic behaviour persists after the period of regression. It also demonstrated that neurological and behavioural impairments, including autistic features, are relatively independent of one another. Consistent with previous reports of the RTT phenotype, individual MECP2 mutations demonstrate complex associations with autistic features. Evidence of persistent autistic behaviour throughout childhood, and of a link between hand function and social skills, has important implications not only for research on the RTT behavioural phenotype, but also for the clinical management of the disorder.