Journal of intellectual disability research : JIDR
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J Intellect Disabil Res · Sep 2011
The impact of living arrangements and deinstitutionalisation in the health status of persons with intellectual disability in Europe.
Despite progress in the process of deinstitutionalisation, very little is known about the health conditions of people with intellectual disability (PWID) who live in large institutions and PWID living in small residential services, family homes or independent living within the community. Furthermore, there are no international comparison studies at European level of the health status and health risk factors of PWID living in fully staffed residential services with formal support and care compared with those living in unstaffed family homes or independent houses with no formal support. ⋯ Particular illnesses were found to be highly prevalent in PWID. There were important differences between different living arrangements depending on the level of formal support available and the stage of deinstitutionalisation. PWID are in need of tailored primary health programs that guarantee their access to quality health and health promotion and the preventative health actions of vaccination programs, systematic health checks, specific screenings and nutritional controls. Extensive national health surveys and epidemiological studies of PWID in the EC member states are urgently needed in order to reduce increased morbidity rates among this population.
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J Intellect Disabil Res · Aug 2011
Needs and challenges of daily life for people with Down syndrome residing in the city of Rome, Italy.
Population-based surveys on the quality of life of people with Down syndrome (DS) are difficult to perform because of ethical and legal policies regarding privacy and confidential information, but they are essential for service planning. Little is known about the sample size and variability of quality of life of people with DS living in the city of Rome, which has a population of 2.7 million inhabitants. The aim of the present study is to explore the needs and challenges in health, social integration and daily life, of people with DS living in Rome. ⋯ The health, employment and social needs of the majority of people with DS in the city of Rome are not being met. The findings of this study underscore the urgent need for more comprehensive inclusion in society of adults with DS and for the provision of support services to create an enabling environment for inclusion. Because of the variability of performance among individuals with DS, there is a need to create more case-specific options in terms of work, living arrangements, social networking and medical services. Schooling and social inclusion in childhood alone do not guarantee a satisfactory quality of life in adulthood. It is argued herewith that policy of inclusion and support should extend over the entire lifetime of people with DS.
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J Intellect Disabil Res · Jul 2011
Nature and quality of antipsychotic prescribing practice in UK psychiatry of intellectual disability services.
Antipsychotics are perceived to be over-used in the management of behavioural problems in people with an intellectual disability (ID). Published guidelines have set good practice standards for the use of these drugs for behavioural indications. We sought to identify the range of indications for which antipsychotic drugs are prescribed in people with ID and to audit clinical practice against the standards. ⋯ In clinical practice, most prescriptions for antipsychotic drugs in people with ID are consistent with the evidence base and the overall quality of prescribing practice, as measured against recognised standards, is good, although in some patients potentially remedial side effects may not be detected and treated.
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J Intellect Disabil Res · Jun 2010
Case ReportsEnd-of-life decisions: an important theme in the care for people with intellectual disabilities.
While end-of-life decisions in the general population have received attention in several countries, not much is known about this in people with intellectual disabilities (IDs). Therefore, the prevalence and nature of end-of-life decisions were investigated in a Dutch centre providing residential care for 335 people with IDs. ⋯ This study demonstrates that medical end-of-life decisions played a part in significant numbers of people with IDs who have died within this centre, but further studies are needed to establish decision-making processes.
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J Intellect Disabil Res · Mar 2010
Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome.
The study examined the profile of stress in mothers and fathers of preschool children with autism, Down syndrome and typically developing children. A further aim was to assess the association between parenting stress and coping style. ⋯ The results indicated a higher level of stress in parents of children with autism. Additionally, an interaction effect was revealed between child diagnostic group and parent's gender for two scales of parenting stress: dependency and management and limits of family opportunities. Mothers of children with autism scored higher than fathers in parental stress; no such differences were found in the group of parents of children with Down syndrome and typically developing children. It was also found that parents of children with autism differed from parents of typically developing children in social diversion coping. Emotion-oriented coping was the predictor for parental stress in the samples of parents of children with autism and Down syndrome, and task-oriented coping was the predictor of parental stress in the sample of parents of typically developing children. The results strongly supported earlier findings on parenting stress in parents of children with autism. They also shed interesting light on the relationship between coping styles and parental stress.