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. Data from VOICES-SF were obtained from intellectual disability service providers for each death within their supported population over 18 months, 149 decedents in all. RESULTS: Only 34.2% of deaths were anticipated, death was often sudden or followed a short illness. Four dying trajectories were identified, and categorized by length of illness, service use, care outcomes, symptom control and cause of death. CONCLUSIONS: Recognition that most deaths in this group were unanticipated implies a need for better preparation for less expected dying and better anticipation. A descriptive epidemiology of dying among people with intellectual disabilities is needed.

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. For 158 (71%) deaths, respondents returned a supplemented and modified version of VOICES-SF. RESULTS: The observed death was 12.2 deaths per 1,000 people supported per year, but just over a third deaths had been deaths anticipated by care staff. Mortality patterns, place of usual care and availability of external support exerted considerable influence over outcomes at the end of life. CONCLUSION: Death is not a common event in intellectual disability services. A major disadvantage experienced by people with intellectual disabilities was that their deaths were relatively unanticipated. People with intellectual disabilities living in supported living settings, even when their dying was anticipated, experienced poorer outcomes.

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. DESIGN: Nationwide population-based postbereavement survey. PARTICIPANTS: 38 ID care providers took part in the study. The supported over 13 000 people with ID. Over the 18-month period of data collection, 222 deaths were reported. The survey was completed, by care staff, for 157 (70.7%) of those deaths. RESULTS: Decedents had complex health, functional and behavioural needs. Death was unanticipated in a high proportion of cases. Quality of care provided across care settings was generally well rated. However, hospital care and care provided at the time of was less well rated, particularly in comparison with the general population. Respondents reported low levels of involvement in care and awareness of approaching death among adults with ID, and lower than in the general population. CONCLUSIONS: Access to end-of-life care for adults with ID may be constrained by a failure to identify approaching the end of life. The high proportion of unexpected deaths in this population warrants further study. There is a need to increase and support the involvement of adults with ID to be active partners in planning care at the end of their lives.

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. Detailed behavioural data, Psychiatric Assessment Schedule for Adults with a Developmental Disability (PAS-ADD) checklist and Adaptive Behaviour Scale (Part 1) scores were collected on 76% of the 930 adults identified. RESULTS: Just under 17% of participants reached threshold scores on one on more subscales of the PAS-ADD checklist. There was some evidence of increasing behavioural severity being associated with increasing psychiatric symptoms. There were no associations between specific forms of challenging behaviour and individual symptoms. CONCLUSIONS: The data would appear supportive of previous suggestions that it is unlikely that the majority of challenging behaviours in adults with intellectual disability are underpinned by psychiatric disorder.

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. There is also some limited evidence of other beneficial outcomes. All published research to date has involved people with ID in community group homes with 24-hour staffing. CONCLUSION: The established efficacy of AS for increasing engagement means that research attention can now be given to: (a) developing AS to enhance its positive impact on outcomes such as choice and relationships; (b) exploring the wider implementation of AS beyond community group homes and people with ID; and (c) examining the effectiveness of wide-scale implementation of AS, with careful attention to issues such as management, organisational and staffing factors, and cost.

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. It describes some good practice standards and highlights the need for further research and debate in this complex area.

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. AIM: To determine the likelihood that a structured health check by the primary care team supported by appropriate education would identify and treat previously unrecognised morbidity in adults with an intellectual disability. DESIGN OF STUDY: Individuals were identified within primary care teams and a structured health check performed by the primary care team. This process was supported by an educational resource. Face-to-face audit with the team was performed 3 months following the check. SETTING: Forty general practices within three health authorities in south and mid-Wales participated. They had a combined registered patient population of 354 000. METHOD: Health checks were conducted for 190 (60%) of 318 identified individuals; 128 people moved, died, withdrew from the study, or refused to participate. RESULTS: Complete data were available on 181 health checks; 51% had new needs recognised, of whom 63% had one health need, 25% two health needs, and 12% more than two. Sixteen patients (9%) had serious new morbidity discovered. Management had been initiated for 93% of the identified health needs by the time of audit. This study is the first to identify new disease findings in a primary care population and the likelihood that such disease will be treated. CONCLUSIONS: The findings reflect a concern that current care delivery leaves adults with an intellectual disability at risk of both severe and milder illness going unrecognised. Health checks present one mechanism for identifying and treating such illness in primary care.

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. We collected information through interviewing service personnel in each type of setting on the costs of service provision, the nature of support provided, and the quality of life of residents. We also conducted observations in each setting. Results suggest that noncongregate residential supports may be more cost effective than congregate residential supports.

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. Behavioral responsiveness was measured by calculating the likelihood of appropriate activity occurring given the occurrence of staff interaction. This likelihood was represented by the statistic Yule's Q. Seizure frequency was also evaluated. RESULTS: Participant responsiveness after drug review was similar to baseline indicating an absence of long-term adverse effects. Participants experienced a significant decrease in seizure frequency. CONCLUSION: It was concluded that drug review led to seizure reduction while behavioral measurement confirmed no loss of responsiveness.

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. Staffing input was associated with resident receipt of attention, as were operational arrangements. Resident activity was related to resident adaptive behavior and receipt of attention but not resource input. Cost-effectiveness implications are discussed.

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. Nor did they differ in terms of the homeliness or physical integration of settings. However, there were significant differences between providers on the important variables of working methods and staffing levels. Resident ability correlated with staffing levels and organisational culture, but not with staff working methods. The results and their implications are discussed in the context of other research which has used the same measures.