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Abstract  Adults with developmental disabilities often experience health disparities when compared with the general population. Early detection of risk of disease may help to reduce such disparities, but many adults often do not participate in preventive health care at recommended levels. The aim of the present study was to describe health screening activities involving a large group of adults and explore how factors, such as living arrangement, type and severity of disability, and age, influence reported rates of participation. The study involved administering surveys to adults with disabilities and their immediate support persons (parents, carers, and professional support workers) and asking whether adults had visited a general practitioner (GP) and what was their participation in preventive services during the previous 12‐month period. Participation in preventive screening services ranged between 3% (screening for sexually transmitted infection) and 58% (screening for elevated blood pressure), and rates for certain services appeared low, particularly in comparison with equivalent screenings in the general population. Results showed a relationship between participation rates and living situation, type of disability, and age, but not severity of disability. The results suggest that higher rates of participation in preventative health activities among those enrolled in formal services may reflect a greater obligation or concern among paid workers and possibly a lack of awareness of health issues by families, and also that screening disparities may be attributed to GPs who may be applying guidelines from the general population but who are not aware of disability‐specific issues when examining adults with disabilities.

Background People with severe intellectual disability are considered vulnerable to exploitation in research. Discovery of exploitative practices in recent history has motivated the development of guidelines for informed consent and proxy decision‐making procedures when involving these individuals in research.Methods Issues for determining capability to provide informed consent and the proxy decision process are reviewed according to the literature, current ethics guidelines and recent legislature in Victoria, Australia.Results The complex process of involving in research people with severe intellectual disability who are particularly vulnerable by virtue of their institutionalized residential status is discussed within the context of a recent project into examining potential nutritional determinants of Pica behaviour (i.e. the eating of inedible items).Conclusions This example serves to highlight the role of legislation, various government bodies and researchers in balancing principles of protection of vulnerable groups and rights to self‐determination.

Abstract  This paper addresses the issues of assessment and psychological interventions of mental health in people with complex communication needs of people with intellectual disability and/or cerebral palsy. The literature indicates that research data have been lacking in this area, with a dearth of appropriate assessment tools and information on how to adapt evidence‐based psychological interventions for this group. Existing psychological intervention research has been characterized by case studies and quasi‐experimental designs with adults with mild intellectual disability who possess relatively good communication skills. In addition, there have been a few experimental studies with a focus on anger management with this group. In light of the lack of an empiric base, clinical practice for people with complex communication needs must draw on the evidence base for the general population, and adaptations of key elements of psychological therapies. Given the paucity of research addressing the mental health issues of people with complex communication needs, there is a need for the development of mental health assessment tools that enable clinicians to directly obtain information from the individual and for building the evidence base for counseling people with complex communication needs.

AbstractBackgroundResearch 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.MethodThe 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.ResultsOf 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.ConclusionsThe findings suggest that strategies to improve Effective Team Leadership and Supporting Well‐Being dimensions of culture may contribute to enhancing certain QOL outcomes.

This article reviews the literature related to issues of communication augmentation for individuals with severe and profound intellectual disabilities within the framework of the "Participation Model" (Rosenberg & Beukelman, 1987). This model consists of a communication opportunity strand and a communication access strand. The opportunity strand is discussed briefly in terms of the knowledge and attitudinal barriers that may limit communication, with suggestions for remediation of these problems. The access strand is discussed in detail, beginning with a review of current methods of assessing capability in relevant domains. The relevant literature related to the learning characteristics of both unaided and aided communication techniques is reviewed next, followed by a discussion of potential external constraints that may affect the range of options for consideration. This information facilitates the next step of selecting communication options with a view to the current and future needs and capabilities of the individual. Following this, a review is presented of vocabulary selection and effective instructional techniques in augmentative communication interventions. Finally, evaluation issues are discussed in relation to level of disability.

AbstractCompared to mothers, research into the role and involvement of fathers in families with a child with a disability appears limited. The aim was to scope and critically appraise the available literature, with a focus on fathers' perceptions and experiences of their role in parenting a child with a developmental disability. A systematic search was conducted of research published from 2000 to 2017 that addressed the aim. Articles were included if data were available about fathers' experiences and/or perceptions of their role in relation to a child with disability; those addressing stress responses to fathering only were excluded. Information was extracted for summary. Twenty‐one studies (12 quantitative, 9 qualitative), conducted across 10 countries, met inclusion criteria. Key themes of qualitative studies included the process of fathers adapting to their child's disability, planning for the future, involvement with health services and how their perceptions and experiences shaped their participation in the family. Results of quantitative studies demonstrated differences in experiences of fathers compared to mothers as well as in approaches fathers applied to cope with challenging experiences. The review highlights current gaps in understanding the experiences of fathers and their perceptions about their own roles in parenting a child with disability. There is a need for further research into factors that might influence fathers' participation within their families.

AbstractBackgroundOrganizational culture in group homes for people with intellectual disabilities has been identified as influencing staff behaviour and residents' quality of life (QOL). Despite this influence, culture has been under‐researched, with no published and validated instrument to measure its dimensions in group homes. The aim was to develop such a measure.MethodThe Group Home Culture Scale (GHCS) was developed using a theory‐driven approach. Items were generated from the research literature, which were reviewed by experts and tested in cognitive interviews. Data from 343 front‐line staff were used for exploratory factor analysis.ResultsThe content and face validity of the GHCS were found to be acceptable. Exploratory factor analysis indicated that the GHCS measured seven dimensions of group home culture. Cronbach's alpha for the dimensions ranged from 0.81 to 0.92.ConclusionsThe GHCS has potential use in research to determine whether dimensions of group home culture predict the quality of staff support and residents' QOL.

AbstractInternationally, there is a commitment to inclusive education for students with disability. In Australia, equality of access to mainstream schools is a key policy feature, with educational exclusion of children with disability being unlawful. In this review, the aim was to identify and analyze contemporary documents that point to failures in inclusive policy and legislation in Australia and the state of Victoria by demonstrating educational exclusion of school students with disability. A search of the gray literature was conducted to identify relevant documents from 2010 to 2017. Reference lists of retrieved documents were also searched for other sources. The review included 23 documents and findings demonstrated that the needs of children and families are often not met, with a disconnection evident between inclusive educational policy, legislation, and practices that exclude children with disability from mainstream education. Restrictive practices and gatekeeping act to dissuade families from enrolling children in mainstream education, with many seeking enrolment in special schools. However, concerns with special school practices, such as the use of restrictive interventions have been documented. Parents have resorted to homeschooling, with associated emotional and economic consequences. Tensions between schools and parents were evident, with parents not always having the opportunity to be fully involved in decision‐making processes and planning. The key finding of this review was a clear gap between policy and legislative intentions and practices in schools. Lack of clarity on reasonable adjustments and an underpinning research evidence base to policy results in schools being left to develop their own practices. Strong leadership is needed from principals, and a whole of school commitment, to traverse policy practice gaps that continue to impact on the ability of children with disability to be well‐supported in accessing mainstream schools.