Transition staff discuss sex education and support for young men and women with intellectual and developmental disability

Background Young people with intellectual and developmental disability (IDD) get information, education, and support about social and sexual relationships from different sources. Staff are often involved in providing this education and support. We explored if and how this support is offered to young people transitioning to adulthood.Methods Focus groups were conducted with 17 staff from 3 transition services to illicit information about their experiences providing this education and support.Findings A key theme was that staff are “reluctant counsellors.” Although staff provided social and sexual education, they reported being underprepared and relied primarily on their own values as guidance. They did this in full recognition that transition services filled a social gap for participants, blurring the lines between education and social support.Conclusion Further research is needed to inform sexuality and relationship policy and practice during transition to adulthood, as this is a key learning and developmental time for young adults with IDD.

Masculinity theory in applied research with men and boys with intellectual disability

Researchers in intellectual disability have had limited theoretical engagement with mainstream theories of masculinity. In this article, the authors consider what mainstream theories of masculinity may offer to applied research on, and hence to therapeutic interventions with, men and boys with intellectual disability. An example from one research project that explored male sexual health illustrates how using masculinity theory provided greater insight into gendered data. Finally, we discuss the following five topics to illustrate how researchers might use theories of masculinity: (a) fathering, (b) male physical expression, (c) sexual expression, (d) men's health, and (e) underweight and obesity. Theories of masculinity offer an additional framework to analyze and conceptualize gendered data; we challenge researchers to engage with this body of work.

Diabetes in people with an intellectual disability : a systematic review of prevalence, incidence and impact.

To establish the prevalence and incidence of Type 1 and Type 2 diabetes in people with an intellectual and developmental disability and determine their impact on health and well-being and to appraise the evidence available to inform good practice in diabetes management for people with intellectual and developmental disabilities.

Gendered service delivery : a masculine and feminine perspective on staff gender

Despite acknowledgement that paid caregivers have a significant impact on the lives of people with intellectual disability, the subjective experience of staff gender is rarely considered in research. Qualitative data from a study on the sexual health needs of men and boys with intellectual disability is presented. We designed this study to determine what impact staff gender has on the sexual health needs of men and boys with intellectual disability. Findings suggest that although staff traverse the same geographies of care, they do it in uniquely gendered ways. Staff gender is an important consideration when dealing with sexual health matters and can enhance the type and quality of relationships between people with intellectual disability.

An effective program design to support older workers with intellectual disability to participate individually in community groups

The foreshadowed increase of older people with intellectual disability has become a reality in many developed countries. As these adults age, improved quality of life can be achieved through applications of conjoint policy aims of inclusion and participation. A transition-to-retirement (TTR) program developed for employees of a large multisite disability employment service in Sydney, Australia, used these aims to effect successful partial retirement. The authors describe the program logic of the TTR, detailing its conceptual components as the first step to enabling it to be tested and replicated in other settings. The TTR program has three components: promoting the concept of retirement, laying the groundwork for inclusion of would-be retirees with intellectual disability in the community, and constructing the reality. The third component comprised five stages: planning, locating a group, mapping new routine, recruiting and training mentors, and monitoring and ongoing support. The project's participants were 24 older employees, who replaced 1 day a week of work with membership of a community group and were supported by mentors who facilitated involvement of the participants in their group. Data collected provided information on the implementation of the program, the time and costs expended, and challenges encountered. Key to the model was a coordinator, skilled in generic case management and specific disability interventions (such as active support), who collaborated with others to manage the program. The authors note that by detailing the program logic underpinning the TTR program, they have exposed the hidden work of supporting meaningful inclusion of people with intellectual disability in community groups and added to the limited stock of evidence-informed programs in this area. © 2014 International Association for the Scientific Study of Intellectual and Developmental Disabilities and Wiley Periodicals, Inc.

Knowledge and perceptions of newly graduated medical practitioners in Malaysia of their role in medical care of people with developmental disabilities

Improving content and consistency on developmental disabilities in undergraduate medical curricula has been recommended as a means of improving health outcomes for people with developmental disabilities. Although often the subject of studies in Western countries, little is known about content on developmental disabilities in undergraduate curricula in developing countries. A study was undertaken to: (1) explore content and experience with developmental disabilities received in undergraduate training by medical practitioners in Malaysia; and (2) explore perceptions of their role in the identification and management of developmental disabilities in practice. Comparisons were made according to location of training. Data were collected using a 107-item questionnaire that was administered to 230 newly graduated house officers on their first rotations in seven public hospitals in Peninsula Malaysia. Deficits and inconsistencies were indicated in both content and experience of developmental disabilities during training. Uncertainty about their role in the identification and management of developmental disabilities was evident. Greater inconsistencies and deficits were evident for respondents trained in Eastern and Middle Eastern countries compared with those trained in Malaysia and Western countries. Results suggest a need for increased content, consistency, and intentional exposure in relation to developmental disabilities during undergraduate training across all training settings.

Iniatives to reduce the use of seclusion and restraints on people with developmental disabilities: a systematic review and quantitative synthesis

Contrary to the expectations articulated in public policy, restrictive interventions are commonly used in support services for people with developmental disabilities. This systematic review and quantitative synthesis was undertaken to investigate whether the use of seclusion and restraints on people with developmental disabilities can be reduced. Searches of the Academic Search Complete, CINAHL, MEDLINE, and PsycINFO electronic databases returned 7226 records, of which 11 met the inclusion criteria for this review. A further 3 papers were obtained through scanning the reference lists of those articles included from the initial literature search. All 14 studies were single-subject designs focusing on initiatives to reduce physical or mechanical restraint. Between the baseline and intervention phases, there were mean reductions in the frequency and duration of restraint use of 79% (SD = 21%, n = 13 subjects from 7 studies) and 45% (SD = 58%, n = 10 subjects from 6 studies), respectively. For studies in which restraint use to manage agitation and aggression was targeted, there was a 79% (SD = 21%, n = 13 subjects from 7 studies) decrease in the frequency and a 28% (SD = 67%, n = 6 subjects from 3 studies) reduction in the duration of restraint. With respect to studies in which restraint use to prevent self-harm was targeted, there was a 71% (SD = 34%, n = 4 subjects from 3 studies) reduction in restraint use. Effect sizes were calculable, using non-overlap approaches, for 9 of the 14 studies. The magnitudes of the effect sizes suggest that, on average, the interventions were effective in reducing the use of restraints. The effects generated in studies where restraint use for self-harm was targeted were typically more pronounced than those in which restraint use for agitation and aggression was addressed. There were broad variations, however, in the percentage reductions in restraint use and in the magnitudes of the effect sizes. Although the findings of this review are encouraging, more research is needed, in which greater attention must be paid to rigorous research design, application, and analysis.

Parents' perception of the quality of life of preschool children at risk or having developmental disabilities.

Despite increased concern for the health related quality of life (HRQOL) of people with disabilities, little is known about the HRQOL of children with developmental disabilities. The present study aimed to explore the HRQOL of children who were at risk or having developmental disabilities in Hong Kong. Using the parent-reported Chinese Pediatric Quality of Life Inventory (PedsQL), the HRQOL of 173 children (2–4 years) with signs of delays in development was contrasted with that of 132 children with typical development. We found that those who exhibited high risk of developing a developmental disability had significantly lower overall well-being (76.3 ± 13.7 vs. 84.2 ± 11.3; p<0.001) and psychosocial health (71.3 ± 15.6 vs. 82.5 ± 12.9; p<0.001) but not necessarily physical health. The findings are consistent with previous findings in children with different disabilities and chronic illnesses. They suggest children at risk or having DDs need help in restoring their quality of life up to the standard experienced by their healthy peers, particular in psychosocial aspects such as social functioning, emotion functioning, and school functioning.

Introducing active support in the United States : staff training developments and research directions

Aim: Active Support, an evidence-based intervention developed in the UK and tested in Australia, enables direct support professionals to engage people with high support needs in meaningful and rewarding every day activities. This paper outlines the practical details of adapting the Active Support curriculum for service providers in the US and outlines an evaluation methodology that will inform both service delivery and future developments of Active Support.

Method: Active Support curricula developed in the UK and Australia were adapted for implementation the US.Train-the-trainer activities were conducted in early 2008 in three group homes serving 12 people with intellectual or developmental disabilities. A formative evaluation process was used to identify changes in the materials and training design needed to support a randomized controlled trial of the intervention in 20 small group homes.

Results: Modifications in the delivery of training are needed to account for differences in scheduling patterns and high turnover rates in US group homes, and to adjust British/Australian terminology to the U.S. context.

Conclusions: The translation of active support into the U.S. context requires modifications to support successful implementation. Research is planned to document the success of the modified curriculum in improving outcomes for persons with disabilities.

An ecobehavioural analysis of interactive engagement of children with developmental disabilities with their peers in inclusive preschools

Ecobehavioural analysis procedures were used to examine the interactive engagement of children with developmental disabilities due to Down syndrome who attended inclusive preschools for 2 years. Compared with typical children, the children with disabilities displayed infrequent interactions with peers for the duration of the study. For the children with disabilities, interactive engagement was largely unrelated to the characteristics of class activities, while typical children responded positively to activities expected to promote peer interaction. The results are discussed in terms of the inadequacy of informal strategies commonly applied in inclusive preschool settings to promote interactive engagement in children with disabilities.