Biomedical subjects

R J Stancliffe

Publications and source records attributed to R J Stancliffe.

14 recordsLinked to original sources

PubMed2005

Quality of life and its measurement: important principles and guidelines.

BACKGROUND: The importance of the valid assessment of quality of life (QOL) is heightened with the increased use of the QOL construct as a basis for policies and practices in the field of intellectual disability (ID). METHOD: This article discusses the principles that should guide the measurement process, the major interrogatories (i.e. who, what, when, where, why, and how) of QOL measurement, issues and procedures in the cross-cultural measurement of QOL, and the current uses of QOL data. RESULTS: Based on the above methods, the article presents a number of important guidelines regarding QOL measurement. CONCLUSION: From a measurement perspective the use of the QOL construct is changing. Initially it was used as a sensitizing notion, social construct, and unifying theme. Increasingly, it is being used as conceptual framework for assessing quality outcomes, a social construct that guides quality enhancement strategies, and a criterion for assessing the effectiveness of those strategies. This new role places additional emphasis on the valid assessment of one's QOL.

Culture↗

PubMed2001

Living with support in the community: predictors of choice and self-determination.

Ensuring that people with intellectual disability experience typical levels of choice and self-determination has become an essential objective for quality disability services. Three perspectives on self-determination were identified in the literature: psycho-educational, ecological, and socio-political. Personal characteristics, specific self-determination competencies, and environmental variables all were found to be associated with choice and self-determination. Living environments that were smaller and more individualized were linked to greater choice and self-determination. The theoretical perspective investigators applied to the issues influenced approaches to research and intervention, and differences in emphasis were evident regarding the relative importance of self-determination competencies and environmental factors. MRDD Research Reviews 7:91-98, 2001.

Choice Behavior↗

PubMed2001

Living circumstances of children and adults with mental retardation or developmental disabilities in the United States, Canada, England and Wales, and Australia.

The purpose of this article was to collate evidence to describe where people with mental retardation or developmental disabilities live in five developed countries: United States, Canada, England, Wales, and Australia. Family homes are important dwelling places for people with mental retardation. They are the home of the great majority of children with mental retardation and a considerable proportion of adults with mental retardation. The likelihood of placement outside the family home increases with adulthood and progressively as people age. Adults with mental retardation live in a wide variety of settings, with formal residential provision frequently dependent on the arrangements that the authorities responsible for providing service support have chosen to make. There has been a considerable move away from accommodating people in large segregated and geographically isolated institutions in the countries considered. However, the current range of accommodation includes much with a distinctively different character to the homes where other citizens live. Many people still live in larger groups than would be ordinarily found in typical homes and this may necessitate departure from the architectural norm. In all of the countries considered, there has been a recent trend towards small community settings, compatible with typical housing architecture. This appears furthest advanced in the U.S. but is discernible elsewhere. Availability of residential services at a national level varies between 100 and 155 places per 100,000 total population. Regional variation within countries is even greater. In no case is the national availability considered adequate to meet the demand arising from changing need or expectations. MRDD Research Reviews 7:115-121, 2001. (c) 2001 Wiley-Liss, Inc.

Adult↗

PubMed2000

Substitute decision-making and personal control: implications for self-determination.

Levels of personal control exercised by 76 adults with mental retardation were contrasted by substitute decision-making status. Individuals with no guardian or conservator exercised more personal control than did those with a conservator, who exerted more personal control than did participants with a guardian. Similar group differences in self-determination competencies were also observed. When self-determination competencies were controlled statistically, significant group differences in exercise of personal control remained. Restrictive substitute decision-making status, inappropriate to current competencies, may have constrained individuals' levels of personal control. Reviewing substitute decision-making status on a regular basis and limiting or removing guardianship/conservatorship when it is not appropriate, may enhance personal control.

Adult↗

PubMed2000

Personal control and the ecology of community living settings: beyond living-unit size and type.

Personal control exercised by 74 adults from community living settings in Minnesota was evaluated. Comparisons between living-unit sizes or types controlled statistically for pre-existing differences in adaptive and challenging behavior. Individuals living semi-independently exercised more personal control than did residents of HCBS Waiver-funded settings, who had more personal control than persons from community ICFs/MR. Within the 1- to 5-person size range, size-related differences were detected in personal control. Using hierarchical regression, we found that personal characteristics, self-determination competencies, and environmental variables all made significant, unique contributions to predicting personal control. Path analysis also revealed that this range of variables was related to personal control. These findings strongly support an ecological approach to self-determination.

Adult↗

PubMed1999

Proxy respondents and the reliability of the Quality of Life Questionnaire Empowerment factor.

Previous studies have questioned the reliability of Quality of Life Questionnaire (QOL-Q) Empowerment scores, and reported marked disagreement between consumers' self-reports and proxy data from staff informants. The present study examined agreement between consumer self-reports and proxy responses from community living staff for 63 adults with intellectual disability. Substantial positive correlations between consumers and staff were evident No significant difference was found between total QOL-Q Empowerment scores for self- or staff reports. It was concluded that the QOL-Q Empowerment factor is sufficiently reliable for use both by self-report and proxy respondents. Even so, proxy data are not a substitute for consumer self-reports and the two data sources should not be treated as being interchangeable.

Adolescent↗

PubMed1999

Effectiveness and quality of individual planning in residential settings: an analysis of outcomes.

Individual Habilitation Plan objectives for adults with mental retardation living in institutional or community settings were evaluated for effectiveness and quality. Effectiveness was assessed by contrasting change in relevant outcomes over time for participants with and without individual plan objectives in specified content areas. No significant change in outcomes associated with having an objective was detected for any of the content areas. Except for functionality, ratings of individual plans on all quality domains were poor. Regression analyses mostly failed to show any significant relationship between quality domain ratings and outcomes, although there was weak but inconsistent evidence for validity of the technical adequacy and data-collection quality domains. Findings present a challenge to current expectations that presence and quality of IHP objectives are associated with improved outcomes.

Adult↗

PubMed1999

Effectiveness of challenging behavior IHP objectives in residential settings: a longitudinal study.

Effectiveness of challenging behavior Individualized Habilitation Plan (IHP) objectives in residential settings was examined. We evaluated three indicators of successful intervention: discontinuation of challenging behavior IHP objectives, change in challenging behavior over time, and frequency of one-to-one crisis intervention and found little evidence of effective intervention. Less than a fourth of participants had a challenging behavior objective discontinued within a year. There was no significant change in challenging behavior from one annual assessment to the next, although the decrease in asocial challenging behavior approached significance. Frequency of crisis intervention also did not change significantly over time. These findings suggest that most challenging behavior IHP objectives are ineffective in reducing challenging behavior.

Adult↗

PubMed1999

Interventions for challenging behavior in residential settings.

Predictors of interventions for challenging behavior by residential service providers were examined. Three forms of intervention investigated were (a) Individualized Habilitation Plan (IHP) objectives concerning challenging behavior, (b) one-to-one crisis intervention in the preceding 30 days, and (c) services from behavior management professionals in the preceding 6 months. Findings across these three interventions were largely consistent. Externalized challenging behavior (outwardly directed aggressive or disruptive behavior aimed at other people or objects) was consistently associated with all interventions. The implications of these findings for service providers and service users are discussed.

Adult↗

PubMed1998

Longitudinal study of institutional downsizing: effects on individuals who remain in the institution.

In a 4-year study we examined the longitudinal effects of deinstitutionalization programs on those who remain in institutions being downsized. Individual outcomes investigated were community access, social activities, community inclusion, family relationships, and choice. Effects of residential relocation on individual outcomes such as adaptive behavior were evaluated and total daily per-person expenditure on institutional services for participants was determined. Downsizing was associated with decreased community integration but no change in most other outcomes. Availability of therapy services fell over time, and individuals experienced many residential and day program moves within the institution. Per person expenditure on services increased substantially. Finally, no significant changes in adaptive behavior were associated with intrainstitutional moves.

Activities of Daily Living↗

PubMed1998

Analysis of expenditures and outcomes of residential alternatives for persons with developmental disabilities.

Expenditures, staffing, and outcomes were examined for 116 adults with severe or profound mental retardation who moved from state institutions in Minnesota to various community living settings and a comparison group of 71 persons who remained institutionalized. Outcome variables included community access, social activities, community inclusion, family relationships, and choice. Comparison of participants' personal characteristics revealed no differences between groups, but several differences emerged when the community sample was grouped by residence size or public versus private ownership. Where necessary, covariance analysis was used to adjust for these preexisting differences. Community residences were less costly and had more favorable staffing and uniformly better outcomes than did institutions. Few outcome differences were evident between community residents when compared by residence size or service ownership.

Adult↗

PubMed1997

Community living-unit size, staff presence, and residents' choice-making.

The impact of size of residence on residents' opportunities for choice was examined for Australian adults with mental retardation who lived in staff-supported community residences housing one to five residents. Significantly greater choice was exercised by individuals living in smaller settings, even when personal characteristics of individual residents were controlled statistically. Staff presence was confounded with living-unit size. Analyses including both staff presence and living-unit size revealed strong effects of staff presence, with more choice displayed in settings with longer periods when no staff members were present. Size effects were less evident once the variability associated with staff presence had been accounted for. Results suggest that both staff presence and living-unit size are important predictors of choice.

Activities of Daily Living↗

PubMed1997

Longitudinal study of deinstitutionalization and the exercise of choice.

Day-to-day choices available to former institution residents with severe/profound developmental disabilities (movers) were assessed before and after deinstitutionalization and compared with peers who remained in the same institutions (stayers). Data were gathered annually for both groups for 3 years after baseline. Personal characteristics of the two groups did not differ significantly at baseline, except that stayers exhibited more challenging behavior. This was controlled by using baseline challenging behavior as a covariate in group comparisons. Overall, movers exercised significantly more choice, although groups did not differ at baseline. Effects of deinstitutionalization did not differ with level of disability. However, the absolute level of choice available to both movers and stayers was very low.

Adult↗

PubMed1995

Assessing opportunities for choice-making: a comparison of self- and staff reports.

Self-report responses by adults with mental retardation about the availability of choice were compared with staff responses. Self-reports and staff responses were in clear disagreement on 3 of 10 items. In each case subjects reported that they had significantly more choice than was perceived by staff members. These items involved issues of major life impact for which less choice was available than for other items. Intermingling self-report and third-party responses in research about choice seems unwise because their equivalence cannot be assumed. In contrast to some previous studies, high levels of choice were reported on most items.

Adult↗