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© 2020 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd Background: Research has shown that there is variability in quality of life (QOL) outcomes for people with intellectual disabilities who live in group homes. The aim was to examine dimensions of group home culture as predictors of QOL outcomes. Method: The Group Home Culture Scale (GHCS) was used to measure staff perceptions of culture in 23 group homes. QOL data were available from 98 people with intellectual disabilities. Multilevel modelling was used to examine the associations between the GHCS subscales and four QOL-dependent variables. Results: Of the GHCS subscales, Effective Team Leadership and Alignment of Staff with Organizational Values significantly predicted residents’ engagement in activities. Supporting Well-Being significantly predicted residents’ community involvement. None of the GHCS subscales significantly predicted domestic participation and choice making. Conclusions: The findings suggest that strategies to improve Effective Team Leadership and Supporting Well-Being dimensions of culture may contribute to enhancing certain QOL outcomes.

BACKGROUND: The ageing of people with intellectual disability, accompanied with consequences like dementia, challenges intellectual disability-care staff and creates a need for supporting methods, with Dementia Care Mapping (DCM) as a promising possibility. This study examined the effect of DCM on the quality of life of older people with intellectual disability.METHODS: We performed a quasi-experimental study in 23 group homes for older people with intellectual disability in the Netherlands, comparing DCM (n = 113) with care-as-usual (CAU; n = 111). Using three measures, we assessed the staff-reported quality of life of older people with intellectual disability.RESULTS: DCM achieved no significantly better or worse quality of life than CAU. Effect sizes varied from 0.01 to -0.22. Adjustments for covariates and restriction of analyses to people with dementia yielded similar results.CONCLUSION: The finding that DCM does not increase quality of life of older people with intellectual disability contradicts previous findings and deserves further study.

BACKGROUND Ireland has a growing population of adult persons living with family carers, thereby increasing the demand for residential places. Simultaneously, government policy aimed to reprovision residents living in congregated settings but at a time when funding was curtailed due to the economic crisis. This study examines the movements of people into and among three types of residential options between 2009 and 2014. METHOD A cohort of 20,163 persons recorded on the National Intellectual Disability Database in 2009 was identified and tracked to the 2014 database. RESULTS An estimated 200 persons per annum (@1.6% of those living with families) moved from family care although the number of places available nationally fell by 9%. Moreover, transfers of existing residents into vacated places tended to exceed those from families. CONCLUSIONS More people will have to continue living with their families and for longer if funding for new places remains curtailed.

Background Group home frontline staff have a critical role in implementing service policies, yet research typically examines implementation issues from an organisational perspective. The aim of this study was to explore the self-perception of frontline staff about their role in group homes for people with intellectual disability. Method Constructivist grounded theory methodology guided the study. Data were collected with frontline staff through semistructured interviews and participant observations. Coding and sorting methods were used to analyse participants’ self-perception. Results Frontline staff felt they were valuable contributors who knew the service setting and residents well. Despite this staff felt powerless in their roles, excluded from organisational dialogue, stressed and exhausted. Conclusions Frontline staff have critical insight into service implementation although disability service organisations may limit their capacity to contribute to this. Further action could explore new ways to better nurture frontline staff engagement in organisational dialogue.

This study examines risk and protective factors associated with experiencing homelessness in the year after "aging out" of foster care. Using a state-level integrated administrative database, we identified 1,202 emerging adults in Washington State who exited foster care between July 2010 and June 2012. Initial bivariate analyses were conducted to assess the association between candidate predictive factors and an indicator of homelessness in a 12-month follow-up period. After deploying a stepwise regression process, the final logistic regression model included 15 predictive factors. Youth who were parents, who had recently experienced housing instability, or who were African American had approximately twice the odds of experiencing homelessness in the year after exiting foster care. In addition, youth who had experienced disrupted adoptions, had multiple foster care placements (especially in congregate care settings), or had been involved with the juvenile justice system were more likely to become homeless. In contrast, youth were less likely to experience homelessness if they had ever been placed with a relative while in foster care or had a high cumulative grade point average relative to their peers.

Background The purpose of this study was to uncover and understand factors influencing quality of care received by adults with developmental disabilities and/or mental health disorders living in group homes. Methods The present authors conducted a secondary analysis of data from nine focus group discussions with adults with developmental disabilities and/or mental health disorders, and their family and paid caregivers (N = 52). To focus the analysis, the present authors drew on the research literature to craft a model of quality of group home care using concepts of social inclusion and self-determination, and corresponding staff approaches that include active support and person-centred care. Results Social inclusion and self-determination for adults in group homes are facilitated by staff approaches and manifest in residents being understood and experiencing security and freedom. Conclusions The present authors offer recommendations for group home resources, training, communication and outcome measures that promote residents’ being understood and experiencing security and freedom.

Background\ud The front-line management role in services for people with intellectual disabilities remains rather under-researched. The aim of this study was to examine the experiences of registered managers in services for adults with intellectual disability who exhibit challenging behaviour.\ud \ud Method\ud Interviews, primarily focussed upon staff practice, were conducted with 19 managers of staffed group homes in SE England. Transcripts were analysed using interpretive phenomenological analysis.\ud \ud Results\ud Five groups of themes emerged: monitoring staff performance, supporting new ways of working, shaping staff performance, influence of external and employing agencies, and importance of participants' personal values and experiences.\ud \ud Conclusion\ud The themes identified contribute to a conceptual framework for thinking about front-line management/practice leadership. The limitations, and potential implications, of the findings are discussed.

Background A dimension of the culture in group homes is staff regard for residents. In underperforming group homes, staff regard residents as being not ‘like us’ (Bigby, Knox, Beadle-Brown, Clement & Mansell, 2012). We hypothesized the opposite pole of this dimension, in higher performing group homes, would be that staff regard residents positively. Method Three in-depth qualitative case studies were conducted in higher performing group homes using participant observation, interviews and document review. Results Consistent pattern of staff practices and talk, as well as artefacts, demonstrated staff had a positive regard for residents, who were seen as being ‘like us’. Explicit and continuing attention was given to sustaining positive regard for residents in everyday staff practices and to turning abstract values into concrete realities. Conclusions This positive cultural norm was established, operationalized and embedded through structures, such as a formal policy about language, and processes such as peer monitoring and practice leadership.

Objectives A prospective study was conducted to assess factors associated with risk of turnover among care workers in group homes (GHs) for elderly individuals with dementia. Methods In January, 2010, 51 out of 238 GHs in Sapporo City responded to our request for participation in a survey. During February and March of 2010, 438 out of 700 care workers (62.6%) in the GHs returned a completed questionnaire to us. They were followed up with until March of 2012, and 395 subjects (90.1%) responded to our survey, which was conducted twice. Over the course of 2 years, 91 subjects left their jobs. Cox's proportional hazards model was used for analysis, adjusting for gender and age. Results Less provision of social support by supervisors, colleagues, family or friends was significantly associated with increased risk of turnover. Financial aids for off-the-job training was marginally significantly associated with reduced risk of turnover. Longer duration of working for frail elderly care was significantly associated with decreased risk of turnover. Habitual smoking was significantly associated with increased risk of turnover. Conclusions Social support in the workplace may be important to reduce the risk of turnover in care workers at GHs. Further prospective studies are required in other areas in Japan.

Background Increased provision of out-of-family residential support is required because of demographic changes within the intellectual disabilities population. Residential support now has to be provided in a climate requiring both financial constraint and high quality service outcomes. The aim was to evaluate the quality of life consequences of living with less intensive staff support, resulting from the introduction of more targeted staff allocation coupled with telecare. Methods The study comprised 91 participants who lived in 33 settings. The targeted support/telecare intervention was implemented at staggered intervals in 25 of these settings (63 participants). Data on a range of participant and setting descriptors, quality of care, and a range of objective lifestyle indicators were collected at four points in time over 2 years. Impact of the intervention was evaluated using within-group comparisons over time. Results Comparison between pre- and post-intervention showed that staffing levels were significantly reduced by 23%, whereas they were constant in the absence of intervention. One health indicator improved in the absence of intervention and another improved following intervention. There were no significant changes in any other lifestyle indicators (safety, money, social and community activity, independence or choice). Conclusions A combination of targeted support and telecare had no adverse short-term affect on participants’ quality of life, but reduced staff input so it seems that they have a role to play in the strategic development of out-of-family placements for adults with intellectual disabilities. Further research is needed to explore in more detail how efficiency is achieved in practice.

Background The social exclusion of persons with intellectual disability is more marked in congregated than in individualised supported accommodation. Goal setting was used as a means of increasing individuals’ choices and engaging support staff in personalised planning.Method People living in four different housing and support options were invited to identify up to three ‘social inclusion’ goals they wanted to achieve in the coming months. Nine months later, a review was undertaken to see if their goals had been attained and also to identify what had helped or hindered individuals in doing this.The goal selection was then repeated and reviewed again after a further 9 months.Results The most commonly chosen goals were around social activities with other people and over half the participants were reported to have attained at least one of their goals within 9 months, particularly those in supported living arrangements that had greater hours of individual staff support. In the second 9-month period, fewer people chose goals, although the same proportion as before were successful. The main reason given for goal attainment was the information and support provided by staff. Conclusions Goal setting seems a suitable way of promoting social inclusion as it can be tailored to the needs and aspirations of individuals, although extra efforts may be needed to implement and sustain it with staff across all accommodation options.

Background: An increasing number of old people, and their medical requirements, cannot be managed by their families in their homes, which has been the traditional and prevalent practice in Japan. The number of people with dementia is increasing and behavioral and psychological symptoms of dementia (BPSD) make care difficult. In the present study, we investigated management techniques for BPSD in long-term care facilities in Japan by using the data mining method, which looks at the reported behaviors of care providers. Methods: First, interviews were conducted with 15 care providers to develop items for a questionnaire. These data were analyzed qualitatively and synthesized with criteria from the professional literature. The resulting self-report questionnaire on techniques used to manage different symptoms of dementia was completed by 275 care providers. We applied the association rule as a data mining method examining 15 management techniques related to 13 BPSD. Results: Analysis identified four types of management techniques: (i) emotional and behavior-concordance techniques; (ii) acceptance and supportive techniques; (iii) restraining techniques; and (iv) avoidance techniques. Different management techniques, and combinations of techniques, were found to vary in use and effectiveness with different BPSD. Conclusions: Good management techniques for many BPSD have been developed and are being implemented by care providers. The present study has the potential to inform researchers and care providers in Japan about the types of management techniques in current use, as well as areas of potential need for staff training.

The purpose of this descriptive study was to assess, from an occupational therapy perspective, the occupational performance needs of runaway females between 15 and 33 years old, residing in the state-run shelters in Mashhad, Iran. The inclusion criteria were: (1) participants who were 15 years old or above; (2) participants who resided in one of the state-run shelters in Mashhad; and (3) participants who could read, comprehend and write in Farsi. A written survey was completed by 44 runaway females (response rate: 36.6%). The findings revealed the occupational needs of this population to be as follows: vocational needs to find a meaningful job, emotional needs to manage depression and hopelessness, social participation needs to manage family and peer/friend relationships and peer interactions with the opposite sex to find an appropriate mate and educational needs to continue their education. Participants were from one area of Iran, so the results of the study cannot be generalized to runaway females residing in shelters in other areas of the country. Future research could include a qualitative design to explore more in-depth needs of this population. Also, a larger population of runaway females nationwide should be included in a study to increase generalizability. Copyright © 2008 John Wiley & Sons, Ltd.

This experiment compared the effectiveness of an unlocked, mental health consumer-managed, crisis residential program (CRP) to a locked, inpatient psychiatric facility (LIPF) for adults civilly committed for severe psychiatric problems. Following screening and informed consent, participants (n = 393) were randomized to the CRP or the LIPF and interviewed at baseline and at 30-day, 6-month, and 1-year post admission. Outcomes were costs, level of functioning, psychiatric symptoms, self-esteem, enrichment, and service satisfaction. Treatment outcomes were compared using hierarchical linear models. Participants in the CRP experienced significantly greater improvement on interviewer-rated and self-reported psychopathology than did participants in the LIPF condition; service satisfaction was dramatically higher in the CRP condition. CRP-style facilities are a viable alternative to psychiatric hospitalization for many individuals facing civil commitment.

A survey was conducted on aggressive behaviour within a population of 2412 persons with intellectual disability in Queensland, Australia. Two hundred and sixty-one individuals were identified who engaged in at least one form of aggressive behaviour, yielding an overall prevalence of 11%. The relative prevalence of aggressive behaviour was higher among institutionalized persons (35%) when compared to those living in group homes (17%) or other community-based facilities (3%). The aggressive behaviour sample included a higher percentage of males (64%). Most were described as functioning in the severe/profound (54%) or moderate (31%) range of intellectual disability with one-third having no intelligible speech. Two-thirds of the sample received medication for their challenging behaviour, while only one-third had behavioural programmes. Eighty per cent engaged in three or more forms of aggression. Many also displayed self-injury (34%) or property destruction (30%). Surveys of aggressive behaviour may prove useful for coordinating services.

Eighteen people with learning disabilities who moved from hospital to community-based homes were compared with a matched group of 18 who did not. A week-long time budget diary was used to record each occasion that the person left their home, the people accompanying them on each trip, their mode of transport and their destination. The diary was completed before they left the hospital and was repeated at least 1 year later. There was a strong correlation between the number of trips made from hospital wards at baseline and the number made at follow-up in both groups. Moving from the hospital had no significant effect on the number of trips made, but it did change their nature. Movers made more trips to unsegregated facilities; they made fewer trips alone and more in groups which included both staff and residents.

Aim: The aim of this study was to elucidate the components of end-of-life care provided to older adults with dementia who live in group homes (GHs) in Japan. Introduction: The number of GHs in Japan is rapidly increasing. Although GHs were originally not established to care for elderly people with advanced-stage dementia, many residents remain in the GH even after their stage of dementia advances; thus, end-of-life care is required. Methods: Interviews were conducted with seven GH administrators on their experience in providing end-of-life care to their residents. The constant comparative approach was used for data collection and analysis. Findings: Four themes emerged as essential components of end-of-life care in the GH setting: (i) maintaining a familiar lifestyle; (ii) minimizing physical and mental discomfort; (iii) proactively utilizing desirable medical care; and (iv) collaborating with family members. Conclusion: The combination of the four components seems to be a unique characteristic of end-of-life care in GHs in Japan. These findings may be used to establish a framework for end-of-life care at GHs.

Background One of the essential purposes of intervention programmes for people with profound intellectual disabilities (ID) is to enhance the desirable mood and behaviour and decrease the undesirable ones through stabilizing their emotion. There is lack of validated instrument to offer a comprehensive measure that covers the mood and behaviour, both desirable and undesirable, appropriate for people with profound ID. Method This study aimed to examine the validity and reliability of the Interact Short Form for evaluating the mood and behaviour of people with profound ID, and at the same time, review their emotional profile using the Interact Short Form. Both content validity using expert panel review and construct validity by means of factor analysis were investigated. A total of 75 people with profound ID were recruited. Inter-rater reliability was tested. The results of the Interact Short Form were described to reflect the emotional profile of this group of participants. Results Using the results of expert panel review and those from factor analysis, we found three subscales representing the mood and behaviour of people with profound ID. They were: ‘emotional expression’, ‘interests towards tasks’ and ‘behaviours to environment’. All three subscales were found to be internally consistent (α = 0.71–0.88). The Interact Short Form– People with profound ID version also showed good inter-rater reliability (mean = 0.72). The results of the Interact Short Form showed that this group of participants had fairly stable emotion under the structured setting and activities in the residential institutions where data were collected. Conclusions The Interact Short Form– People with profound ID version serves as a helpful tool for both clinical and research use in assessing the mood and behaviour of people with profound ID in a simple, comprehensive and systematic way.

Research on the merits of long-term group residences is inconclusive. The purpose of the present paper was to investigate the effects of supported group residence on the symptoms, social function, quality of life, general health quality, and the medical/psychiatric cost in Japan of a large number of psychiatric beds and long average length of stay. Patients were assessed every 6 months for 2 years using Positive and Negative Syndrome Scale, Katz Adjustment Scale, World Health Organization Quality of Life (WHO-QOL) and General Health Questionnaire 12-item version. Patients discharged to the supported group residence (SGR) significantly improved with regard to positive symptoms, the level of socially expected activities and free-time activities. The QOL physical domain of the inpatients was significantly more deteriorated compared to the SGR group. The total psychiatric/medical cost of the SGR group was approximately one-third that of the inpatient group, while the cost of the SGR to treat physical comorbidity was much higher. The present findings indicate that SGR has advantages for mental and social function but not for physical health. A major limitation of the present study was the high mean age (>60 years) of the subjects who had been hospitalized for a long period (mean, 24 years).

The aim of the study was to investigate the prevalence of violence directed towards caregivers working in group homes for persons with learning disabilities, and to examine the relation between violent incidents and caregivers' demographics such as gender, age, years in service, years at the present workplace and education, as well as emotional reactions to violence expressed by the caregivers. A questionnaire was distributed to all caregivers, i.e. Registered Nurses, assistant nurses and nurse's aides, working in group homes for persons with learning disabilities. The results showed that 31% of the caregivers (n = 120) had been exposed to violence during the preceding year with physical violence being the most common type of violence. All categories of caregivers were exposed to violence and emotional reactions were common. Weak relations were found between reported exposure to violence and various demographics among caregivers, such as age and education. Daytime work was the only independent factor in a regression model predicting violence towards the caregivers. Feelings of powerlessness, insufficiency and anger were the most frequently reported emotional reactions elicited by violent situations.

Lighthouse Youth Services in Cincinnati, Ohio, began placing foster youth, ages sixteen to eighteen, in individual apartments and other living arrangements in 1981 as a way of preparing them for life after foster care. The program has assisted over thirteen hundred youth and their children using scattered-site apartments, shared homes, roommate situations, host homes, and subsidized housing. The agency works with referring agencies to develop a transition plan one youth at a time and allows youth to move along a continuum of housing options depending on their level of functioning and behavior. Aftercare services assist youth for years after they leave custody. This chapter includes some case studies and summarizes the author's observations from running the program for the past twenty years.

While much of the industrialized world struggles for clues to the growing rise in obesity in their respective countries, researchers and service providers involved in understanding the health characteristics and health behaviors of persons with intellectual disability (ID) struggle with their own issues regarding the increased prevalence of obesity in this segment of the population. What is particularly alarming is that adults with ID residing in the United States in smaller, less supervised settings (e.g., group homes and family households) have a significantly higher rate of obesity compared to other countries and those living in larger and more supervised settings (e.g., institutions). These differences support the theory that the environment appears to exert a powerful influence on obesity in this population. Obesity presents a substantial threat to the livelihood of persons with ID and may have an effect on community participation, independent living, and healthy years of life. The lack of research on successful weight reduction strategies for obese persons with ID makes this an important and greatly needed area of research.

The aim of the present study was to describe violent events as narrated by care providers involving themselves. During a 12-month period, care providers reported 149 violent events. Using consecutive purposive sampling with maximum variation, 61 events were further investigated using narrative interviews with involved care providers. They were involved either as victims, perpetrators or as witnesses. The narratives were analysed using a qualitative descriptive analysis. The presentation of the result includes contextual aspects and three themes: 'misunderstanding each other', 'invasion of personal space' and 'acceptance of violence in work'. These themes represent a process of violence in the narratives. Mutual misunderstanding may be seen as an antecedent to violent events. Invasion of personal space is a theme revealing what violence is about. Acceptance of violence seems to be a natural consequence for the caregivers because the events are seen as unavoidable, impossible to solve and as a constituent of daily work.

Deinstitutionalization and community care were the most influential movements in the field of mental health in the last 30 years. In 1978 Italy was the first country to pass laws that would eliminate mental hospitals and replace them with community-based services. Italian ideas about community care provided inspiration for care in the community legislation when this was introduced in the UK. In order to be able to fairly assess and describe the benefits of Italian mental health care, the author visited a range of care facilities in a prescribed region in the north of Italy. In the course of investigation, the author sought to discover if the implementation of what were regarded by some as radical community attitudes in the care of people with mental health problems had led to innovative approaches when dealing with patients/clients requiring long-term care and treatment. Although the Italian approach is enlightened in many areas of care, the system still has to face up to the problems presented in caring for clients/patients with enduring mental health problems. The circumstances relating to care were unexpected and caused the author to revise his opinion of the Italian approach to community care.

To determine the effects of housing and neighborhood features on residential instability and the costs of mental health services for individuals with chronic mental illness (CMI).Medicaid and service provider data on the mental health service utilization of 670 individuals with CMI between 1988 and 1993 were combined with primary data on housing attributes and costs, as well as census data on neighborhood characteristics. Study participants were living in independent housing units developed under the Robert Wood Johnson Foundation Program on Chronic Mental Illness in four of nine demonstration cities between 1988 and 1993.Participants were assigned on a first-come, first-served basis to housing units as they became available for occupancy after renovation by the housing providers. Multivariate statistical models are used to examine the relationship between features of the residential environment and three outcomes that were measured during the participant's occupancy in a study property: residential instability, community-based service costs, and hospital-based service costs. To assess cost-effectiveness, the mental health care cost savings associated with some residential features are compared with the cost of providing housing with these features.Health service utilization data were obtained from Medicaid and from state and local departments of mental health. Non-mental-health services, substance abuse services, and pharmaceuticals were screened out.Study participants living in newer and properly maintained buildings had lower mental health care costs and residential instability. Buildings with a richer set of amenity features, neighborhoods with no outward signs of physical deterioration, and neighborhoods with newer housing stock were also associated with reduced mental health care costs. Study participants were more residentially stable in buildings with fewer units and where a greater proportion of tenants were other individuals with CMI. Mental health care costs and residential instability tend to be reduced in neighborhoods with many nonresidential land uses and a higher proportion of renters. Mixed-race neighborhoods are associated with reduced probability of mental health hospitalization, but they also are associated with much higher hospitalization costs if hospitalized. The degree of income mixing in the neighborhood has no effect.Several of the key findings are consistent with theoretical expectations that higher-quality housing and neighborhoods lead to better mental health outcomes among individuals with CMI. The mental health care cost savings associated with these favorable features far outweigh the costs of developing and operating properties with them. Support for the hypothesis that "diverse-disorganized" neighborhoods are more accepting of individuals with CMI and, hence, associated with better mental health outcomes, is mixed.

Several techniques have been used in applied research as controls for the introduction of a reinforcement contingency, including extinction, noncontingent reinforcement (NCR), and differential reinforcement of other behavior (DRO). Little research, however, has examined the relative strengths and limitations of these "reversal" controls. We compared the effects of extinction with those of NCR and DRO in both multi-element and reversal designs, with respect to (a) rate and amount of response decrement, (b) rate of response recovery following reintroduction of reinforcement, and (c) any positive or negative side effects associated with transitions. Results indicated that extinction generally produced the most consistent and rapid reversal effects, with few observed negative side effects.

In this study, we examined the relation between naturally occurring rates of self-injurious behavior and appropriate communicative behavior using prospective sequential and matching analyses of descriptive data. Results from both analyses suggested reliable covariation between both forms of behavior and staff attention. Findings are discussed in terms of the applicability of quantitative descriptive analyses to characterize behavior-environment relations in natural contexts.

The transition from hospital to community care for people with long-term mental illness is of growing concern. The aim of the present study was to illuminate if and how people with long-term mental illness have affected their neighbourhood after re-establishing themselves in apartments of their own. Nineteen neighbours of group homes for people with long-term mental illness, in seven different communities in eastern Norway, have been interviewed. The grounded theory procedures as well as the constant comparative method were employed to analyse the findings. From the data, one main category was identified: the need for information.

Background Within the literature on quality of life (QoL), life satisfaction (LS) has emerged as a key variable by which to measure perceived well-being, which is referred to as subjective QoL. The LS self-reports of 93 residents with intellectual disability (ID) living in community-based residences were compared with reports about their LS completed by their staff and parents. Method The residents were interviewed on their LS by social workers who did not belong to the staff of the interviewee's residence. The instrument used was the Life Satisfaction Scale (LSS). Staff and parents completed the short version of the LSS. Results Residents and staff's LS reports were positively correlated. However, significant differences were found between these two groups of informants when the residents were characterized as high functioning, had a low score in challenging behaviour, worked in an integrative employment setting and lived in an apartment. As opposed to staff/resident discrepancies, no differences were found between parents’ and residents’ LS reports. Conclusions If residents cannot to be interviewed about their LS, then the parent is the preferred person to respond on behalf of the resident. The current study highlights the importance of including both objective measures (e.g. functional assessment characteristics) and subjective measures (e.g. LS) in order to get a better understanding of the QoL of people with ID.

To restore mentally disabled persons to social activities, it is necessary to establish an appropriate facility and support system according to the severity of disorder. In the present study, in an attempt to obtain a guide to identifying conditions on which the use of the support house (engoryou) is effective, patients who had been discharged from the support house were divided into different groups by evaluation at discharge. The first group consisted of 30 patients who underwent continued social rehabilitation (recovery group); the second group consisted of 25 patients with discontinued social rehabilitation (the re-hospitalization group), and their demographic factors were compared. The findings are summarized as follows: (i) the recovery group had a significantly shorter total hospitalization period and a smaller number of hospitalizations before entry into the facility, as compared to the re-hospitalization group; (ii) the recovery group was significantly better than the re-hospitalization group in terms of the score of 'thought disorder', although there was no difference in total Brief Psychiatric Rating Scale (BPRS) score, at the time of entry into the facility; (iii) the recovery group was better than the re-hospitalization group in terms of the Rehabilitation Evaluation Hall and Baker (REHAB) items 'speech skills' and 'self-care' at the time of entry into the facility; (iv) the re-hospitalization group experienced relapse of symptoms, mainly positive ones, at the time of the discontinuation of the use of the facility or re-admission. These findings suggest that to make good use of the support house, the improvement of thought disturbance and self-care must be managed appropriately and the prolongation of hospital stay must be prevented before entry into the facility.

Background People with Down's syndrome (DS) are at increased risk of Alzheimer-type dementia (AD) when compared to the general population. Despite AD being a serious progressive disorder, little attention has been paid to the impact of the illness on formal caregivers. In the general population, the Caregiver Activity Survey (CAS) is used to measure time spent by family caregivers assisting people with AD in their day-to-day activities of living. In order to plan appropriate models of health and social care effectively for people with AD and DS, it is imperative that the care requirements of individuals at different stages of dementia are realized. An amended version of this survey, the Caregiver Activity Survey – Intellectual Disability (CAS-ID), was developed and tested for use by professional caregivers in the present study. Methods The CAS-ID was administered to 30 people with DS and their caregivers. Convergent validity was tested by comparing the results of the CAS-ID to other validated tests for cognitive and functional impairment in individuals with DS. Test–retest and inter-rater reliability were investigated. Results The final version of the CAS-ID consists of eight items: dressing, bathing/showering, grooming, toileting, eating and drinking, housekeeping, nursing care-related activities, and supervision/ behaviour management. The scale had excellent test–retest reliability, and correlated strongly with the Down Syndrome Mental Status Examination (DSMSE; r = −0.770), the Test for Severe Impairment (TSI; r = −0.881) and the Daily Living Skills Questionnaire (DLSQ; r = −0.855). Conclusions The present authors provide preliminary evidence for the validity and reliability of the CAS-ID. This instrument offers a means of identifying and measuring care and resources requirements as this population experiences symptoms of dementia. Such information may help assist healthcare professionals in planning supports and services to address the care challenges evidenced at different stages of the disease process.

Purpose To determine the degree of interest in using a computer for the purpose of accessing services from a nurse practitioner (NP) at domestic violence shelters (DVSs); and to identify issues of privacy and confidentiality that might arise from participation by victims of intimate partner violence (IPV) in a Telehealth intervention. Data Sources Focus groups with 19 women residing in two DVSs. Interviews were recorded, transcribed and themes were identified that answered the questions posed in the interviews. Conclusions Most of the women understood the term NP and were favorably inclined to seek services from one. Over half of the women were not familiar with computer use, but were willing to learn in order to receive health care services, both for episodic needs and for maintenance of chronic conditions. After learning of the method proposed to allow them to access an NP through the internet while still protecting their privacy and confidentiality, the women felt comfortable with this approach to meeting their health care needs. Implications for Practice Results from this study can be used to support the development and testing of Telehealth interventions for these victims of IPV.

Background The health status and health needs of adults with intellectual disability (ID) change with advancing age, and are often accompanied by difficulties with vision, hearing, mobility, stamina and some mental processes. Aim The present study collected health status information on a large cohort of adults with ID aged > or = 40 years living in small group, community-based residences in two representative areas of New York State, USA. Method Adult group home residents with ID aged between 40 and 79 years (n = 1371) were surveyed to determine their health status and patterns of morbidity. Results Most subjects were characterized as being in good health. The frequency of cardiovascular, musculoskeletal and respiratory conditions, and sensory impairments increased with age, while neurological, endocrine and dermatological diseases did not. Psychiatric and behavioural disorders declined with increasing age, at least through 70 years of age. Although most conditions increased with age, their frequency varied by sex and level of ID. Frequencies of age-related organ system morbidity were compared to data from the National Health and Nutrition Evaluation Survey III. It was found that adults with ID had a lower overall reported frequency of cardiovascular risk factors, including hypertension and hyperlipidaemia, and adult-onset diabetes. Inconsistencies with mortality data among older adults with ID were observed (which showed equal if not greater prevalence of deaths as a result of cardiovascular disease and cancer). Conclusion These results suggest that either a cohort effect is operating (i.e. contemporary populations are healthier than previous populations), or that there may be under-recognition of select risk factors and diseases.

The aim of the present study was to identify factors associated with variations in the levels of expressed satisfaction among adults with intellectual disability (ID) receiving residential supports. Semi-structured interviews were conducted with 96 people with ID. Forty-five subjects lived in village communities and 51 received community-based residential supports. Ratings were made of the participants' expressed levels of satisfaction in seven domains: (1) their home; (2) daytime activities; (3) social and recreational activities; (4) support from services; (5) friendships and relationships; (6) choices available to them; and (7) risks. The data indicated that: (1) interviewees living in village communities expressed greater satisfaction with friendships and relationships than interviewees living in community-based residential supports; (2) in the other six domains of life satisfaction which were investigated, there were no statistically significant differences between groups; (3) interviewees expressed greater satisfaction with their accommodation and day activities than with friendships, risks and support received; and (4) a wide range of variables relating to the personal characteristics of the interviewees and support received were associated with variations in levels of expressed satisfaction. Variation in the levels of expressed satisfaction was reliably associated with variables relating to the personal characteristics of the interviewees and the nature of the support received.

Breast cancer is one of the commonest cancers to affect women. Present health service guidelines call for screening and mammography for all women aged between 50 and 65 years in an effort to increase early detection and improve survival rates. Nulliparity is one of the associated risk factors for breast cancer. Women with intellectual disability (ID) are increasing in longevity and are frequently nulliparous, and therefore, they are at increased risk of developing breast cancer. The aim of the present study was to review the uptake and knowledge of women with ID living in the community of breast screening programmes. A postal survey of women aged > or = 50 years with ID living in community group homes was used to gather data. Only one-third of the women carried out regular breast examination and a similar proportion had received invitations to mammography. General practitioners and practice nurses were currently playing very minor roles in breast screening these women. Primary health care professionals may be missing opportunistic health promotion opportunities and the support services for women with ID living in the community could be provided with better training and resources to improve breast cancer screening in this vulnerable group.

Drawing from the Social Model of disability, six people with learning difficulties participated over 18 months in researching their own lived experiences. The method involved weekly group discussions supplemented by participant observation. The study's value stems from in-depth inquiry, which included the participants in the data collection, analysis, dissemination and consequences that they found meaningful. The participants lived in nurse managed community homes. They described how they had faced social and economic exclusion, for example, concerning marriage, child rearing and decently paid employment. With the assistance of nursing staff, the participants had overcome many other social barriers and were enjoying a wide range of activities and choices. Consequently, the participants lived varied lives which they described as interesting and worthwhile. Contemporary models of nursing had successfully directed nursing staff to support 'ordinary living'. However, some disabling assumptions were evident within contemporary nursing. Hence, models of nursing and service delivery were helping both to create lifestyles that the participants valued, whilst simultaneously contributing to their disempowerment.

The present study aimed to explore associations between sleep problems and daytime challenging behaviour in a community sample of adults with intellectual disability. Sleep and behaviour questionnaires were completed for 205 people aged 18 years or over living in health- or social-services-managed community housing. This sample represented an 86% return rate. The informants were carers and the individuals themselves where possible. Seventy-nine people with sleep problems were compared with 121 individuals without this difficulty; five people were excluded from the analysis. Individuals with sleep problems displayed significantly more daytime irritability, stereotypy and hyperactivity than those without sleep problems. Individuals displaying clinically significant aggression/temper, self-injury and screaming were significantly more likely to have a concurrent sleep problem, and these forms of challenging behaviour were significantly more severe in the sleep problem group. Associations between sleep problems and daytime challenging behaviour exist in this population, although the nature of any links remains unclear and should be the attention of future research.

This paper reports the measurement of both objective and subjective quality of life in samples of people either with intellectual disability or from the general adult population, drawn from Australia and Italy. Measures were made using the Comprehensive Quality of Life Scale. Generally, it was found that the scores for all groups were comparable. This finding is consistent with the provision of generally decent objective living conditions in both countries and subjective well-being homeostasis, wherein subjective quality of life is held within a predictable range. These results are discussed in the context of measurement difficulties imposed by the need for simple Likert scales and subjective data which are strongly negatively skewed.

Health characteristics of elderly personal care home care residents The purpose of this descriptive study was to explore the health characteristics of elderly personal care home residents. Personal care homes are community-based facilities that provide living arrangements, assistance with basic needs and protective oversight. Personal care home providers were interviewed regarding the health status of 80 elderly residents. The most frequent ADL needs were bathing, personal hygiene and dressing. Thirty-seven per cent of the residents had some bladder incontinence. Eighty-two per cent of residents needed some help with medication management. Over half of the residents had some cognitive impairment. These findings support the proposition of increased prevalence of cognitive impairment in personal care home residents as compared to the first studies a decade ago. The combination of functional deficits and cognitive impairment indicates that these elderly residents may have unmet health needs. The role of the registered nurse in this environment is discussed.

Active support, a package of procedures which includes activity planning, support planning and training on providing effective assistance, was introduced in five community residences serving 19 adults with severe intellectual disability following a multiple baseline design. The residents were directly observed to ascertain the level of assistance they received from staff and their engagement in activity. The introduction of active support increased the levels of assistance residents received, their engagement in domestic activities and their total engagement in activity. The intervention did not affect the level of social engagement. Across individuals, increases in assistance and engagement in activity were significantly and positively correlated. Both were significantly inversely related to resident adaptive behaviour. At baseline, staff gave more attention and assistance to people who were behaviourally more able. After the introduction of active support, receipt of attention was unrelated to adaptive behaviour and the behaviourally less able received more assistance. The disparity in activity between the more and less able was reduced. Gains were maintained in the majority of houses.

Objectives: To describe the development of a rating scale measure of caregivers' emotional reactions to aggressive challenging behaviour, and to report preliminary psychometric data for the scale. Design: Using previous research on staff working with people with learning disabilities, a range of likely emotional reactions to challenging behaviours were selected for possible inclusion in a rating scale measure. Methods: A total of 83 care staff from 23 community residences for people with learning disabilities rated their recent emotional reactions to aggressive challenging behaviour using 18 emotion items. A further sample of 18 care staff participated in a test–retest study after the initial stages of scale development. Results: A rating scale was developed on the basis of a factor analysis and further item analysis. The measure has two subscales: feelings of depression/anger (10 items), and feelings of fear/anxiety (5 items). The subscales have a high internal consistency, good test–retest reliability and are relatively unaffected by social desirability biases. Conclusions: The emotional reactions to aggressive challenging behaviour scale has excellent face and construct validity, and other preliminary psychometric data are promising. The scale has a number of potential research and clinical applications.

The case of a 50-year-old man with severe intellectual disability is described. After 20 years of institutional care, the subject was moved to a newly opened community group home. His physical and mental health deteriorated at this location after unproven allegations of sexual abuse which had taken place whilst he had been living in the institution. Although the subject's health continued to deteriorate, there was resistance to his readmission to the same hospital for assessment. He had always needed to be cajoled into eating, but this approach had not been followed by the home which had contributed towards his weight loss. The situation the subject, the carers and the health personnel found themselves in illustrates how problematic it is to find the right balance between restrictive practices and respect for an individual's choice.

Programs to teach sexual abuse prevention skills to persons with mental retardation have rarely been evaluated empirically, and typical evaluations are limited to assessment of the participants' knowledge rather than their performance of specific skills. In the present study, 6 adult women with mental retardation were trained in sexual abuse prevention, and performance was assessed using four separate measures: pretests and posttests of knowledge, verbal report, role play, and naturalistic probes. All women learned the skills but failed to exhibit them to criterion during the probes. We discuss the implications for further training and assessment of sexual abuse prevention skills.

A small-scale study of the inter-rater and staff:client reliability of the Schalock & Keith (1993) Quality of Life Questionnaire (QOL-Q) was conducted. Whilst the sample size was small and the QOL-Q achieved an acceptable overall level of reliability, the study replicated the pattern of low staff:client concordance and staff overestimation of the independence and autonomy of clients reported by Reiter & Bendov (1996). The results are briefly discussed in the context of the ongoing debate about the utility of proxy response in the literature.

In a previous study, the present authors reported on the prevalence of psychoactive (psychotropic and anticonvulsant) medication use among people with intellectual disability residing in community settings in the state of North Dakota, USA. The present study replicates the earlier survey. A questionnaire was sent to all group homes serving people with developmental disabilities. Questionnaires were obtained for 100% of North Dakota group home residents. Psychoactive medications (anticonvulsants included) were used by 38% of the 1384 residents represented. The results are discussed in relation to the previous study from North Dakota.

The community living preferences of 4 institutionalized adults with mild mental retardation were identified using photographs that depicted a variety of residential characteristics. Individuals then were taught to obtain information regarding their preferences during tours of community group homes, to report that information to their social workers, and to evaluate the homes based on the information obtained. A multiple baseline across participants design showed that all 4 participants substantially increased their skills at asking questions, reporting information, and evaluating homes. the results indicate that people with mental retardation can take an active role in major lifestyle decisions that others have typically made for them.