A review of instruments developed to measure outcomes for carers of people with mental health problems

Objective: Community-based care for mental disorders places considerable burden on families and carers. Measuring their experiences has become a priority, but there is no consensus on appropriate instruments. We aimed to review instruments carers consider relevant to their needs and assess evidence for their use. Method: A literature search was conducted for outcome measures used with mental health carers. Identified instruments were assessed for their relevance to the outcomes identified by carers and their psychometric properties. Results: Three hundred and ninety two published articles referring to 241 outcome measures were identified, 64 of which were eligible for review (used in three or more studies). Twenty-six instruments had good psychometric properties; they measured (i) carers' well-being, (ii) the experience of caregiving and (iii) carers' needs for professional support. Conclusion: Measures exist which have been used to assess the most salient aspects of carer outcome in mental health. All require further work to establish their psychometric properties fully.

Young people with intellectual disabilities attending mainstream and segregated schooling: perceived stigma, social comparison and future aspirations

Mainstream schooling is a key policy in the promotion of social inclusion of young people with learning disabilities. Yet there is limited evidence about the school experience of young people about to leave mainstream as compared with segregated education, and how it impacts on their relative view of self and future aspirations. Sixty young people with mild to moderate intellectual disabilities in their final year of secondary school participated in this study. Twenty-eight individuals came from mainstream schools and 32 attended segregated school. They completed a series of self-report measures on perceptions of stigma, social comparison to a more disabled and non-disabled peer and the likelihood involved in attaining their future goals. The majority of participants from both groups reported experiencing stigmatized treatment in the local area where they lived. The mainstream group reported significant additional stigma at school. In terms of social comparisons, both groups compared themselves positively with a more disabled peer and with a non-disabled peer. While the mainstream pupils had more ambitious work-related aspirations, both groups felt it equally likely that they would attain their future goals. Although the participants from segregated schools came from significantly more deprived areas and had lower scores on tests of cognitive functioning, neither of these factors appeared to have an impact on their experience of stigma, social comparisons or future aspirations. Irrespective of schooling environment, the young people appeared to be able to cope with the threats to their identities and retained a sense of optimism about their future. Nevertheless, negative treatment reported by the children was a serious source of concern and there is a need for schools to promote the emotional well-being of pupils with intellectual disabilities.

Does training improve understanding of core concepts in cognitive behaviour therapy by people with intellectual disabilities? A randomized experiment

Background. People with intellectual disabilities (ID) experience similar or even higher rates of mental health problems than the general population and there is a need to develop appropriate treatments. Cognitive behaviour therapy (CBT) is effective for a wide range of disorders in the general population. However, there is some evidence that people with ID may lack the cognitive skills needed to take part in CBT. Aims. To test if people with ID can learn skills required for CBT, specifically the ability to distinguish between thoughts, feelings, and behaviours and to link thoughts and feelings (cognitive mediation). Method. A randomized independent groups design was used to examine the effect of training in CBT on two tasks measuring CBT skills. Thirty-four adults with ID were randomly allocated to the experimental condition ðN ¼ 18Þ or to the control condition ðN ¼ 16Þ. CBT skills were assessed blind at baseline and after the intervention. Results. The training led to significant improvements in participants’ ability to link thoughts and feelings, and this skill was generalized to new material. There was no effect of training on participants’ ability to distinguish amongst thoughts, feelings, and behaviours. People with ID can, therefore, learn some skills required for CBT. This implies that preparatory training for CBT might be useful for people with ID. The results might be applicable to other groups who find aspects of CBT difficult.

Cognitive Therapy Abilities in People with Learning Disabilities

Background  There is a need to develop and adapt therapies for use with people with learning disabilities who have mental health problems. Aims  To examine the performance of people with learning disabilities on two cognitive therapy tasks (emotion recognition and discrimination among thoughts, feelings and behaviours). We hypothesized that cognitive therapy task performance would be significantly correlated with IQ and receptive vocabulary, and that providing a visual cue would improve performance. Method  Fifty-nine people with learning disabilities were assessed on the Wechsler Abbreviated Scale of Intelligence (WASI), the British Picture Vocabulary Scale-II (BPVS-II), a test of emotion recognition and a task requiring participants to discriminate among thoughts, feelings and behaviours. In the discrimination task, participants were randomly assigned to a visual cue condition or a no-cue condition. Results  There was considerable variability in performance. Emotion recognition was significantly associated with receptive vocabulary, and discriminating among thoughts, feelings and behaviours was significantly associated with vocabulary and IQ. There was no effect of the cue on the discrimination task. Conclusion  People with learning disabilities with higher IQs and good receptive vocabulary were more likely to be able to identify different emotions and to discriminate among thoughts, feelings and behaviours. This implies that they may more easily understand the cognitive model. Structured ways of simplifying the concepts used in cognitive therapy and methods of socialization and education in the cognitive model are required to aid participation of people with learning disabilities.

Interviewing children and young people with learning disabilities: guidelines for researchers and multi-professional practice

We argue that it is important for researchers and service providers to not only recognize the rights of children and young people with learning disabilities to have a ‘voice’, but also to work actively towards eliciting views from all. A set of guidelines for critical self-evaluation by those engaged in systematically collecting the views of children and young people with learning disabilities is proposed. The guidelines are based on a series of questions concerning: research aims and ethics (encompassing access/gatekeepers; consent/assent; confidentiality/anonymity/secrecy, recognition, feedback and ownership; and social responsibility) sampling, design and communication

Change strategies to assist agencies in developing supported living services for people with developmental disabilities /

This material has been funded through a grant from the Illinois Planning Council on Developmental Disabilities.

The employment of people with mental illness

People with a mental illness are among the most socially and economically marginalised members of the community. They experience high levels of unemployment and nonparticipation in the labour force. Unemployment has a number of negative effects including the loss of purpose, structure, roles and status and a sense of identity which employment brings. Employment enables social inclusion in the wider community and is an important way that people with a mental illness can meaningfully participate in the wider community. Australia has a mental health strategy, which guides the ongoing reform of mental health services. However, specific strategies to address the social and economic marginalisation of people with a mental illness have not been addressed. A recovery-oriented approach is recommended, which integrates the key sectors involved. To date there has been little intersectoral collaboration between the various sectors such as mental health services, housing, and vocational services. People require more role-specific assistance to enable them to participate in socially valued roles implicit with citizenship. There is a need to formulate improved pathways to assistance and more evidence-based forms of assistance to re-establish career pathways. This report aims to: 1) collect relevant overseas and Australian evidence about the employment of people with mental illness; 2) identify the potential benefits of employment; 3) describe patterns of labour force participation in Australia among people with mental illness; 4) identify how mental illness can cause barriers to employment; 5) outline the type of employment restrictions reported by people with mental illness; 6) identify the evidence-based ingredients of employment assistance; 7) identify relevant policy implications; and 8) suggest strategies to improve employment outcomes and career prospects for people with mental illness.

Association of anticholinergic burden with adverse effects in older people with intellectual disabilities:an observational cross-sectional study

BACKGROUND: No studies to date have investigated cumulative anticholinergic exposure and its effects in adults with intellectual disabilities. AIMS: To determine the cumulative exposure to anticholinergics and the factors associated with high exposure. METHOD: A modified Anticholinergic Cognitive Burden (ACB) scale score was calculated for a representative cohort of 736 people over 40 years old with intellectual disabilities, and associations with demographic and clinical factors assessed. RESULTS: Age over 65 years was associated with higher exposure (ACB 1-4 odds ratio (OR) = 3.28, 95% CI 1.49-7.28, ACB 5+ OR = 3.08, 95% CI 1.20-7.63), as was a mental health condition (ACB 1-4 OR = 9.79, 95% CI 5.63-17.02, ACB 5+ OR = 23.74, 95% CI 12.29-45.83). Daytime drowsiness was associated with higher ACB (P<0.001) and chronic constipation reported more frequently (26.6% ACB 5+ v. 7.5% ACB 0, P<0.001). CONCLUSIONS: Older people with intellectual disabilities and with mental health conditions were exposed to high anticholinergic burden. This was associated with daytime dozing and constipation.

Young people with learning disabilities who sexually harm others: the role of criminal justice within a multi-agency response

This paper outlines the key findings from a recent study of statutory service responses to young people with learning disabilities who show sexually inappropriate or abusive behaviours, with a particular focus on the involvement of criminal justice agencies. The study found that although inappropriate sexual behaviours were commonplace in special schools, and that serious acts of abuse including rape had sometimes occurred, education, welfare and criminal justice agencies struggled to work together effectively. In particular, staff often had difficulty in determining the point at which a sexually inappropriate behaviour warranted intervention. This problem was frequently compounded by a lack of appropriate therapeutic services. In many cases this meant that no intervention was made until the young person committed a sexual offence and the victim reported this to the police. As a consequence, young people with learning disabilities are being registered as sex offenders. The paper concludes by addressing some of the policy and practice implications of the study’s findings, particularly those which relate to criminal justice.

NEW Solutions: An Australian health promotion programme for people with mental illness

The prevalence of people who are overweight or obese is continuing to rise. This is a key risk indicator of preventable morbidity and mortality resulting from many diseases. The increase in the number of obese people is associated with dietary practices and a reduction in physical activity. There is a need to implement strategies for the reduction of obesity in at-risk groups. People with a mental illness are at high risk of many physical illnesses related to behavioural factors, which include poor diet and lack of exercise. Health promotion programmes need to be incorporated into mental-health services to improve the general health and wellbeing of people with a mental illness. An Australian psychiatric rehabilitation service developed and implemented a health promotion programme, NEW Solutions, which aimed to address issues related to weight gain, dietary practice and physical inactivity.

Orientation system for people with cognitive disabilities

In health care there has been a growing interest and investment in new tools to have a constant monitoring of patients. The increasing of average life ex-pectation and, consequently, the costs in health care due to elderly population are the motivation for this investment. However, healthmonitoring is not only important to elderly people, it can be also applied to people with cognitive disabilities. In this article we present some systems, which try to support these persons on doing their day-to-day activities and how it can improve their life quality. Also, we present an idea to a project that tries to help the persons with cognitive disabilities by providing assistance in geo-guidance and keep their caregivers aware of their location.

Resilience factors of university and college students with learning disabilities as revealed through retrospective interviews /

This qualitative study examined resilience factors of eight university and college students with learning disabilities as revealed through retrospective interviews. This study has added to the existing literature surrounding resilience especially as it relates to individuals with learning disabilities. This study may provide additional insight into the emotional impacts of repeated and chronic risks on students with learning disabilities. The major themes that emerged using the interpretive phenomenological analysis method (Smith & Osborn, 2003) were organized under these four major headings: Challenges and Obstacles, Surviving Challenges, Supportive Conditions, and A Journey of Discovery and Hope. An adaptation of the listening guide analytical method (Gilligan, Spencer, Weinberg, & Bertsch, 2003) was also utilized and offered a more personal depiction of the participants and an exploration of the unique contributions their stories made to this study. Specifically, a theme of feeling trapped/wanting to escape emerged as a reaction to adversity faced during elementary school years. Furthennore, this study has demonstrated that for several of the participants, the benefits of positive outlets extended beyond nurturing areas of strength and self-esteem to also include the provision of a short respite from their challenges and enhanced feelings of overall well-being. Additionally, this study may add to the existing literature surrounding character traits evident in resilient students, specifically highlighting the significance of optimism and selfacceptance.