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Background: The review examined the effectiveness of Active Support (RQ1) and stakeholders' experiences of the model (RQ2). Method: Data were meta-analysed (RQ1; studies = 14) and synthesized narratively (RQ2; studies = 10). Results: By follow-up (6 months post-training), effect sizes (RQ1) for resident total activity engagement were significant and ranged from small (d = 0.33, 95% CIs: 0.10-0.50) to large (Tau-U = 0.95, 95% CIs: 0.64-1.25) depending on study design. Follow-up changes in staff assistance were moderate (d = 0.56, 95% CIs: 0.23-0.89; Tau-U 0.63, 95% CIs: 0.32-0.93) and large for quality of support (d = 1.03, 95% CIs: 0.61-1.44). Other outcomes did not change. Conclusions: Active Support was more effective following complete staff training, in larger settings, at lower staff-to-resident ratios and with less experienced staff. Active Support training and outcomes were valued by staff and residents (RQ2), and staff experienced increased job satisfaction. Lower staff turnover and organizational readiness appear crucial for maintaining implementation.

Few published studies have reported on the psychological well-being of family members of individuals with Rett syndrome (RTT). Eighty-seven mothers of girls and women with RTT completed a questionnaire survey about their daughters' behavioral phenotype, current health, and behavior problems, and their own and a sibling's well-being. Mothers reported increased anxiety but similar levels of depression when compared to a normative sample. Across all problem domains on the Strengths and Difficulties Questionnaire, child and adolescent siblings (n = 39) were reported by mothers to have fewer difficulties than a normative sample. The severity of their daughters' RTT behavioral phenotype predicted increased anxiety and stress for mothers. Increased RTT daughters' current health problems predicted more maternal perceptions of positive gain.

This article examines two methodological issues regarding ways of obtaining and analyzing outcome data for people with intellectual disabilities: (a) self-report and proxy-report data and (b) analysis of population-based data sets. Some people with intellectual disabilities have difficulties with self-reporting due to problems of understanding and communication. However, there are serious doubts about the validity of proxy data for subjective issues. One important challenge with secondary analysis of population-based data sets is the difficulty of accurately identifying survey participants with intellectual disabilities. In both areas examined, it is important to recognize these constraints when interpreting research based on such data.

Background: Many people with intellectual disabilities display high levels of anger, and cognitive-behavioural anger management interventions are used routinely. However, for these methods to be used optimally, a better understanding is needed of different forms of anger assessment. The aim of this study was to investigate the relationship of a range of measures to self- and carer reports of anger expression, including instruments used to assess mental health and challenging behaviour. Method: Adults with intellectual disabilities, who had been identified as having problems with anger control, their key-workers and home carers all rated the service users' trait anger, using parallel versions of the same instrument (the Provocation Inventory). In addition, service users completed a battery of mental health assessments (the Glasgow Depression Scale, Glasgow Anxiety Scale and Rosenberg Self-Esteem Scale), and both groups of carers completed a battery of challenging behaviour measures (the Hyperactivity and Irritability domains of the Aberrant Behavior Checklist and the Modified Overt Anger Scale). Results: Participants had high levels of mental health problems (depression: 34%; anxiety: 73%) and severe challenging behaviour (26%). Hierarchical linear regression analysis was used to explore the extent to which anger ratings by the three groups of respondents were predicted by demographic factors, mental health measures and challenging behaviour measures. Older service users rated themselves as less angry and were also rated as less angry by home carers, but not by key-workers. More intellectually able service users were rated as more angry by both sets of carers, but not by the service users themselves. Significantly, mental health status (but not challenging behaviour) predicted service users' self-ratings of anger, whereas challenging behaviour (but not mental health status) predicted carers' ratings of service users' anger. Conclusions: Service users and their carers appear to use different information when rating the service users' anger. Service users' self-ratings reflect their internal emotional state and mental health, as reflected by their ratings of anxiety and depression, whereas staff rate service users' anger on the basis of overt behaviours, as measured by challenging behaviour scales.

Background: The quality of life of adults with intellectual disabilities living in the family home is an under-researched area. The current study compared indicators of household and community activity between adults living in family homes and those in out-of-family placements. Methods: Four datasets were merged to produce information on the household participation and social and community activities of 721 adult participants living independently (n = 30) or in family (n = 142) or staffed homes (n = 559). Data on age, gender, adaptive and challenging behaviour, and social impairment were also available. Participant characteristics and household and community activity indicators were compared across places of residence. In addition, for those living in family or staffed homes, multiple regression was used to examine the association between the activity indicators and place of residence after controlling for participant characteristics. Results: People living independently had higher household participation. People living in staffed housing had higher household participation and did more community activities more frequently than people living in family homes. Place of residence was a significant factor after controlling for participant differences. Conclusions: Interpretation should take account of the limited nature of the activity indicators. However, the comparison adds weight to other recent research suggesting that adults living in family homes may have fewer activity opportunities than those living in supported accommodation.

Background: The triad of impairments characteristic of autistic spectrum disorders and severe challenging behaviours are reasonably common among adults with intellectual disabilities. The aim was to investigate whether they had an impact on lifestyle among such adults living in staff-supported community housing. Methods: Data were collected on the adaptive and challenging behaviour, social impairment, attention from staff, social and community activities, household participation and engagement in activity of 427 adults living in 146 staffed houses. Presence of the triad of impairments characteristic of autistic spectrum disorders was based on items from the Disability Assessment Schedule. Categorization of severe challenging behaviour was based on scores on two domains of the Aberrant Behavior Checklist. Participants were divided into groups with and without the relevant characteristics and sub-samples selected which were matched on Adaptive Behavior Scale scores. Lifestyle outcomes were compared. In addition, multiple regression was used to examine the association between lifestyle outcomes and the presence of autistic spectrum disorders or severe challenging behaviours after controlling for other participant characteristics. Results: After controlling for adaptive behaviour, there were no significant differences between those with and without the triad of impairments. People with severe challenging behaviour received significantly more staff attention but were similar in terms of social, community and household activities. The regression analyses found small negative associations between Aberrant Behavior Checklist scores and variety of social and community activities and household participation after controlling for Adaptive Behavior Scale scores. Conclusions: Results support previous findings that low adaptive behaviour has a negative impact on lifestyle outcome. Compared with this, the presence of autistic spectrum disorders or severe challenging behaviour has little effect.

Background: The purpose of this study was to evaluate the quality of life consequences arising from the resettlement of adults with challenging behaviour severe enough to be deemed to require continuing healthcare from a traditional learning disability hospital to new purpose-built bungalows. The new accommodation was provided by a specialist NHS trust through special project arrangements designed to ensure that the provision of homelike accommodation in the community was coupled with "state of the art" staff training. Methods: There were 19 participants. Baseline data were collected on their adaptive and challenging behaviour and psychiatric status. Data on a variety of quality of care and lifestyle indicators were collected when the entire sample was in hospital ("T[subscript 1"]), when a minority had moved to the community, but the majority remained in hospital ("T[subscript 2]"), when the majority had moved to the community but a minority remained in hospital ("T[subscript 3]") and at follow-up ("T[subscript 4]"), when all lived in the community. Results: There were almost no areas of significant deterioration in quality of care or lifestyle outcome arising from moving to the community. The community provision was more homelike and associated with some improvement in working methods and staff contact received by participants, increased family contact, greater participant involvement in household activity and constructive activity generally and reduction in staff-reported challenging behaviour. Increases in the range and frequency of social and community activities over time were found but such increase also occurred while people remained in the hospital. Conclusions: This evaluation has shown that the quality of care and lifestyle outcomes associated with new NHS community settings for adults with learning disabilities and severe challenging behaviour assessed as requiring continuing healthcare were generally equivalent or superior to previous hospital levels. In this, findings were similar to other more general deinstitutionalisation studies. Certain improvement over time was found within the follow-up period studied. Further follow-up may be relevant as developing the desired working culture among staff from an institutional background may take longer than was given within the length of this study. (Contains 11 tables and 1 figure.)

The evidence base on outcomes associated with autism in older adulthood is limited. The expected increase in the prevalence of older adults with autism highlights the need to describe their profiles and service needs. Adults 50 years or older with an intellectual disability (ID) and the triad of impairments characteristic of autism spectrum disorders (ASD) were compared to peers with ID only, and younger adults with ASD and ID. After accounting for ability differences, older adults with ASD did not differ from those with ID in terms of behavior problems, psychiatric disorder, and quality of life. Any differences in the skills of adults with ASD were associated with decreased adaptive skills, and not the presence of ASD per se.

Background: An earlier study (Baxter "et al." 2006) found that a structured health check conducted in primary care identified clinically significant previously unrecognized morbidity among adults with intellectual disabilities. The aim here was to examine whether follow-up health checks would identify equally significant newly identified morbidity and to investigate this as a function of the interval between health checks. Method: Adults with intellectual disabilities who had had an initial health check (n = 108) participated: group 1 (n = 39) had a repeat health check an average of 28 months later, group 2 (n = 36) had a repeat health check an average of 44 months later and group 3 (n = 33) did not have a subsequent health check. Thirty participants in group 1 had a second repeat health check an average of 14 months after the first repeat. An audit of the results of the health check established whether morbidity was newly identified. Information was collected on each participant's age, gender, place of residence, skills, challenging behaviour, social abilities, psychiatric status and perceived health. Comparisons within groups over time or between groups at a point in time were made using non-parametric statistics. Results: A similar number of newly identified health problems were found at the repeat health check compared to the initial check. The nature of needs identified was also similar. There was no association between the number of new needs identified at the repeat health check and the interval between it and the initial check. The perceived health of participants receiving health checks tended to decline. Conclusions: As the level of new need revealed by repeated checks at even the shortest interval since the previous check studied here (mean = 14 months) was as high as that found by the initial check, annual health checking could be a justifiable intervention for this population. Decline in perceived health may represent more accurate assessment by carers following feedback from the health checks

Background: Studies have found that health checking in primary care led to the identification of previously unrecognized morbidity among adults with intellectual disabilities. The aim here was to evaluate whether health checking stimulated increased consultation with the general practitioner or another member of the primary care team, increased health promotion actions undertaken outside the health check or increased contact with specialists. Method: Data on the above three categories of activity were abstracted from the medical records of 77 adult participants with intellectual disabilities for eight 6-month periods before and seven 6 month periods after they had undergone a health check. Comparisons of access to care before and after the health check were made using non-parametric statistics. Results: On average, participants had 5.4 and 1.8 primary care and specialist consultations per year respectively. There were no significant differences in either rate before and after the health check. The frequency of health promotion actions increased significantly after the health check from a mean of 1.2 to 2.2/year. Conclusions: Comparison of the primary care and specialist consultations rates of people with intellectual disabilities with those for the general population might suggest that the former have greater access to these services. However, comparison to the general practitioner consultation rates of patients with other chronic conditions would seem to indicate that contact with primary care may not be commensurate with need. Attention to health promotion is inadequate. Further research is required to substantiate whether health checking increases health promotion and how increased health promotion activity would affect the health of this population.

In a matched-groups design, costs and quality of life outcomes for adults with intellectual disabilities with relatively low support needs were compared between those in fully staffed group homes (n = 35) and in semi-independent living (n = 35). Data were collected on participant characteristics, setting organization, various lifestyle outcomes, and costs. There were no differences in the majority of lifestyle outcome measures. Fully staffed participants had better outcomes in money management and some health indicators. Semi-independent living participants had better outcomes for choice and community activities undertaken without staff support. Costs for semi-independent living were less. On balance, semi-independent living could offer certain cost-effective lifestyle advantages provided that sufficient attention is given to health, living, and financial well-being.

Background: Anti-psychotic medications are widely prescribed to people with intellectual disabilities and have a range of negative side effects. The aim was to identify the level of knowledge of anti-psychotic medications and their side effects among key carers or home managers of adults with intellectual disabilities living in residential group homes who are prescribed such medication. Method: The sample was 25 of the 30 adults on the caseloads of community nurses in one community learning disability team who lived in residential services and who were prescribed anti-psychotic medication. Key carers (n = 22) or home managers (n = 3) were interviewed about their knowledge of these medications and their side effects, the source of their knowledge and their needs for training. Results: Knowledge of potential side effects was somewhat limited. Only two were identified by the majority of respondents. Most respondents felt insufficiently informed and in need of further training. Conclusions: There is a role for an informed professional, such as a community nurse, to ensure that carers receive good, verbal and written information about such medications and their side effects at the time of prescription.

Background: There are no studies that have compared outcomes for staff in different types of supported accommodation for people with intellectual disabilities and challenging behaviour. This study looked at stress, morale and intended job turnover in staff in two types of community-based residential supports: non-congregate settings where the minority of residents have challenging behaviour; and congregate settings where the majority of residents have challenging behaviour. Materials and methods: A self-completion survey questionnaire was used to collect information on the basic characteristics of staff, levels of staff stress, job satisfaction and propensity to leave their employment. Results: One hundred and fifty-seven questionnaires were returned from staff, the majority of whom were on fixed-term contracts. Congregate settings were not associated with higher levels of stress as might be assumed. Overall, over a quarter of staff reached criterion on the General Health Questionnaire-12 for experiencing emotional distress, and over a third were likely to actively seek new employment in the next year. The greatest perceived sources of stress were lack of resources and lack of staff support. The lowest level of satisfaction was with the rate of pay. Those in non-congregate settings reported greater perceived stress because of lack of procedures to deal with challenging behaviour. Conclusions: High levels of intended staff turnover may be more due to job insecurity and lack of support than service user challenging behaviour. Employers seeking to reduce turnover should pay attention to basic pay and conditions, as well as staff training in appropriate methods for dealing with challenging behaviour.

Background: The aims were to: (i) explore the association between age and size of setting and staffing per resident; and (ii) report resident and setting characteristics, and indicators of service process and resident activity for a national random sample of staffed housing provision. Methods: Sixty settings were selected randomly from those accommodating six or fewer adults with intellectual disabilities in Wales. Nine settings subsequently withdrew. Information from the remaining 51 was obtained on resident ages, gender, adaptive behaviour, physical and sensory disabilities, social impairment and challenging behaviour, the number and working hours of staff, staff:resident ratios at different times of the day, working practices, resident receipt of attention and assistance from staff and resident activity. The sample of 51 residences was divided into four groups of 12, 13, 13 and 13 settings each, according to ascending average adaptive behaviour scale scores. Results: Age of residence was associated with larger size of residence and fewer staff hours per resident. Higher staffing per resident was associated with smaller setting size. Staffing per resident differed across adaptive behaviour groups to a limited extent. Size and age of residence, working practices, resident receipt of attention and assistance from staff did not differ across groups but resident engagement in activity did. Considerable within-group variation was found. Conclusions: The data illustrate trends in provision over time. In addition, they give a picture of recent practice and raise questions about whether staff input, on one hand, and staff training and performance, on the other hand, are well enough matched to the different needs of residents at different points of the adaptive behaviour spectrum.

There are relatively few examples of emancipatory research in which people with an intellectual disability become co-workers in the research process. The current study examined the feasibility of training someone with an intellectual disability to conduct quality of life interviews with peers. The extent to which response bias in a sample of 21 people with an intellectual disability varied according to whether interviews were conducted by a researcher or a person with an intellectual disability was also investigated. Response bias was found not to be related to the characteristics of the interviewer. Amongst people who responded without bias, responses were not tailored to interviewer characteristics. The study demonstrated that people with an intellectual disability can be trained and supported to be competent data collectors and to hold positions of responsibility in the research process.

Policy appears to regard person-centred planning (PCP) as underpinning strategic planning. While accepting the logic of its role in planning for individuals, this commentary argues that PCP cannot fulfil a strategic planning role because the development of PCP on a wide enough scale to be useful for this purpose is itself a strategic development, which will take considerable time and resources to achieve. There is still a place for population-based norms or targets based on available epidemiological data to indicate the needed scale of provision and associated resource requirement. Three illustrations are described. In conclusion, it is noted that the current lack of indicative provision targets is a weakness of recently issued policy, an absence which does nothing to safeguard the interests of those who depend on service support.

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.

Analysis of data from 51 group homes for people with intellectual disabilities in Wales found variation in staff input was related to residents' challenging behavior, smaller residence size, provider agency, and residents' receipt of attention. Resident activity was related to resident adaptive behavior and receipt of attention but not resource input. Cost effectiveness implications are discussed. (Contains references.) (Author/DB)

Structured interviews with 154 adults with mental retardation showed two-thirds were either unable to respond or exhibited response bias. There was a significant difference in scores on the Adaptive Behavior Scale between those who exhibited response bias and those who did not. The substitution of a proxy respondent is discussed. (Contains references.) (Author/CR)

A staff training intervention, Active Support, designed to increase the participation in activities by adults with severe mental retardation living in community residences, was evaluated in 38 residences involving 303 staff members and 106 persons with mental retardation. Active Support resulted in increased engagement in activities, especially for people with lower adaptive behavior. (Contains references.) (Author/DB)

Active Support, a package of procedures which includes activity planning, support planning, and training on providing effective assistance, was evaluated in five community residences serving 19 adults with severe mental retardation. Findings indicated that the likelihood of a resident engaging in activity significantly increased following staff training in Active Support, an increase that was maintained at follow-up. (Contains references.) (Author/DB)

Draws together the results of seven studies that investigated factors influencing the effects of service quality in community-based residential services for people with severe mental retardation. Results found that quality of staff and resident activity is dependent on an interaction between the structure, orientation, and procedures followed within the setting. (Author/CR)

This article reviews the literature on quality of life for people with mental retardation and proposes a model of quality of life that integrates objective and subjective indicators, a broad range of life domains, and individual values. The model includes five dimensions: physical well-being, material well-being, social well-being, emotional well-being, and development and activity. (Author/DB)

Small community homes in England for severely and profoundly mentally retarded adults are described and compared to institutional settings and larger community units. The small homes were found to produce beneficial client functioning and high levels of staff/client interaction. The paper concludes that interaction effects are possibly more powerful than single effects. (Author/JDD)

This survey of nine institutional and community settings serving persons with severe handicaps found (1) in groups managed by one or two staff, staff interactions, and client adaptive functioning improved with decreased group size; and (2) improvement in staff performance and client behavior from addition of staff to a client group was marginal or nonexistent. (Author/DB)