Expecting the unexpected: measures, outcomes and dying trajectories for expected and unexpected death in adults with intellectual disabilities in social care settings in the UK.

Background: Considerable attention is rightly paid to preventable deaths in adults with intellectual disabilities. The pattern of these deaths and the implications for services have been less considered.

Method: This paper forms part of a larger cross-sectional study of deaths in a defined population of adults with intellectual disabilities.

Last months of life of people with intellectual disabilities: A UK population-based study of death and dying in intellectual disability community services.

Background: Population-based data are presented on the nature of dying in intellectual disability services.

Methods: A retrospective survey was conducted over 18 months with a sample of UK-based intellectual disability service providers that supported over 12,000. Core data were obtained for 222 deaths within this population.

End-of-life care in intellectual disability: a retrospective cross-sectional study.

Background: Adults with intellectual disability (ID) experience inequality in access to healthcare that is considered to extend to end-of-life care. Their experiences of healthcare at the end of life and how these compare with the general population are unknown.

Aim: To describe the end-of-life care outcomes for adults with ID living in residential care in the UK using the VOICES-SF questionnaire and compare these with the general population.

Screening for psychiatric disorders in a total population of adults with intellectual disability and challenging behaviour using the PAS-ADD checklist.

Background: Previous research has suggested a variety of possible relationships between the presence of symptoms of psychiatric disorder and challenging behaviours in people with intellectual disability. This study explores this relationship in a total population sample of adults with challenging behaviour.

Materials And Methods: Over 800 service settings in a defined geographical area were screened to identify individuals with challenging behaviour.

Active support: a critical review and commentary.

Background: Active Support (AS) is an approach for promoting increased engagement in activities by people with intellectual disability (ID).

Method: We critically reviewed the available research on AS, and added a commentary to help guide future research and practice.

Results: Despite weaknesses in the research design of some studies, there is consistent evidence that AS results in increased engagement in activities.

Restraint and self-injury in people with intellectual disabilities: a review.

Most of the recent debate concerning the ethics of physical interventions has focused on the management of aggressive and destructive behaviours, neglecting the management of self-injurious behaviour. This is an important omission, given the extremely serious consequences that can arise from this form of challenging behaviour. The present article reviews types of restraint used to manage self-injury, prevalence of use, and main and side effects of restraint use.

Previously unidentified morbidity in patients with intellectual disability.

Background: Adults with a learning disability frequently have unmet health needs. The cause for this is complex and may be related to difficulties in accessing usual primary care services. Health checks have been widely recommended as a solution to this need.

Quality and costs of community-based residential supports for people with mental retardation and challenging behavior.

A longitudinal matched-groups design was used to examine the quality and costs of community-based residential supports to people with mental retardation and challenging behavior. Two forms of provision were investigated: noncongregate settings, where the minority of residents had challenging behavior, and congregate settings, where the majority of residents had challenging behavior. Data were collected for 25 people in each setting.

Exploring the evaluation of antiepileptic drug change in people with intellectual disabilities and high-frequency epileptic seizures: seizure control and sustained responsiveness to the environment.

Purpose: Optimum antiepilepsy medication should be successful in reducing seizures with minimal adverse effects on the patient's ability to concentrate or general level of awareness. The purpose was to investigate the potential of a method of measuring responsiveness to environmental events as a means of reflecting awareness levels among people with intellectual disabilities undergoing review of medication for high-frequency epileptic seizures.

Methods: Observations of 22 participants referred to a specialist clinic were conducted three times a month over a 5-month period following the initial baseline measures and clinical intervention.

Rational resourcing and productivity: relationships among staff input, resident characteristics, and group home quality.

Relationships among staff input per resident, resident characteristics, setting characteristics, and service quality were investigated. Data were obtained from 51 group homes in Wales on (a) resident numbers, ages, gender, adaptive behavior, challenging behavior, and additional disabilities; (b) allocated staff hours and actual staff costs; (c) provider agency, date of provision, and internal operational arrangements; and (d) resident receipt of staff attention and resident activity. Variation in staff input was related to resident challenging behavior, smaller residence size, and provider agency or date of provision.

Characteristics of staffed community housing services for people with learning disabilities: a stratified random sample of statutory, voluntary and private agency provision.

Within the staffed housing model relatively little is known about the characteristics of different types of provider agency. Data on size, homeliness and physical integration of settings, organisational culture, working methods, staffing levels and resident characteristics, were collected on a stratified random sample of provision in South-West England and Wales. Provider agencies did not differ significantly on three of the four variables relating to residents' characteristics.