A study protocol for a pilot randomised trial of a structured education programme for the self-management of type 2 diabetes for adults with intellectual disabilities

BACKGROUND: The need for structured education programmes for type 2 diabetes is a high priority for many governments around the world. One such national education programme in the United Kingdom is the DESMOND Programme, which has been shown to be robust and effective for patients in general. However, these programmes are not generally targeted to people with intellectual disabilities (ID), and robust evidence on their effects for this population is lacking. We have adapted the DESMOND Programme for people with ID and type 2 diabetes to produce an amended programme known as DESMOND-ID. This protocol is for a pilot trial to determine whether a large-scale randomised trial is feasible, to test if DESMOND-ID is more effective than usual care in adults with ID for self-management of their type 2 diabetes, in particular as a means to reduce glycated haemoglobin (Hb1Ac), improve psychological wellbeing and quality of life and promote a healthier lifestyle. This protocol describes the rationale, methods, proposed analysis plan and organisational and administrative details.

METHODS/DESIGN: This trial is a two arm, individually randomised, pilot trial for adults with ID and type 2 diabetes, and their family and/or paid carers. It compares the DESMOND-ID programme with usual care. Approximately 36 adults with mild to moderate ID will be recruited from three countries in the United Kingdom. Family and/or paid carers may also participate in the study. Participants will be randomly assigned to one of two conditions using a secure computerised system with robust allocation concealment. A range of data will be collected from the adults with ID (biomedical, psychosocial and self-management strategies) and from their carers. Focus groups with all the participants will assess the acceptability of the intervention and the trial.

DISCUSSION: The lack of appropriate structured education programmes and educational materials for this population leads to secondary health conditions and may lead to premature deaths. There are significant benefits to be gained globally, if structured education programmes are adapted and shown to be successful for people with ID and other cognitive impairments.

TRIAL REGISTRATION: Registered with International Standard Randomised Controlled Trial (identifier: ISRCTN93185560 ) on 10 November 2014.

Women's cognitive and emotional processing during sexual arousal : the effects of erotic film and absorption

Sexual arousal is a complex and dynamic element of women’s sexuality. Accounts vary, however most multidimensional models highlight the cognitive, affective and physiological components of the female sexual arousal response. While literature examining the peripheral physiological changes that occur during female sexual arousal abounds, there has been a dearth of literature pertaining to the cognitive and affective components. Thus, while many authors have included cognitive and emotions as independent components of the female sexual arousal response, there has been little empirical research to validate this approach. The aim of the current thesis was to examine the cognitive and affective components of female sexual arousal in more depth, investigating the nature of the relationship between these components under various experimental conditions. In order to do so, two integrated studies were conducted, each highlighting the effects of either external or internal variables on women’s subjective sexual arousal, absorption, positive affect and negative affect. Study One was designed to evaluate women’s emotional and cognitive processing of two elements of erotic film – foreplay and erotic context. 60 women were asked to report their subjective sexual arousal, absorption, positive affect and negative affect in response to one of four erotic film excerpts. The erotic excerpts varied in accordance with the degree of foreplay (low vs. high) depicted and the context in which the sexual activities took place (novel vs. habitual context). Women in the study responded more favourably to the high foreplay erotic film excerpt, subsequently reporting higher degrees of subjective sexual arousal, absorption and positive affect. Women also responded favourably to the erotic excerpt filmed in a novel context, reporting greater subjective sexual arousal as a result. The environment in which the sexual encounters were filmed failed to have an effect however, on women’s absorption or their positive or negative affect. The results of Study One suggest that stimulus specific variables, such as the degree of foreplay depicted, have a significant influence on female cognitive and emotional processing of erotic film. The results also suggest that a relationship exists between absorption, subjective sexual arousal and positive affect, albeit a correlational one. Specifically, there was evidence of parallel processing during sexual arousal, as participant reported sexual arousal, absorption and positive affect all increased and decreased in unison. Based on the results it was suggested that future research attempt to experimentally manipulate one of these variables, to examine its direct effect on the remaining variable. Thus, Study Two aimed to examine the effects of absorption on women’s cognitive and emotional processing of erotica. Study Two manipulated absorption at two levels (high vs. low), examining the impact of these states on participants’ subsequent absorption, subjective sexual arousal and positive and negative affect. 62 women were asked to read one of two sets of test session instructions. The first, participant-oriented instruction set, instructed participants to immerse themselves in the erotic film excerpt, as if they were active participants in the sexual exchange. The second, spectator-oriented instruction set, directed participants to observe and evaluate the erotic film. These instructions were designed to elicit high and low degrees of absorption, respectively. The utility of this approach when manipulating female absorption, was demonstrated by self reported ratings of absorption, given at the conclusion of the film presentation. Participants were also asked to report their subjective sexual arousal and positive and negative affect at the conclusion of the erotic film presentation. The findings of this study suggest that the adoption of a participant-oriented (high absorption) perspective elicits more favourable responses from participants than a spectator-oriented (low absorption) perspective, with participants in the former experimental group reporting greater degrees of subjective sexual arousal and positive affect. Negative affect was equivalent across experimental conditions, with the participants reporting that they experienced little to no aversive feelings during either of the experimental conditions. The results suggest that the degree to which a women immerses and absorbs herself in a sexual stimulus has a significant impact in her subsequent cognitive and affective processing of that stimulus. More specifically, it appears that women respond more favourably when they are highly absorbed and immersed in a stimulus, reporting greater subjective sexual arousal and positive affect. Overall, the results of Studies One and Two highlight the dynamic and complex nature of female sexual arousal. It appears that women have definite cognitive and affective responses to sexual stimuli. The magnitude of these responses may be mediated by a number of factors however, including the intrinsic qualities of the stimulus and the degree to which the woman attends to the stimulus. Both these variables act to either enhance or inhibit the sexual arousal response. There results have important implications for current sexuality literature. While women’s cognitions and emotions in response to erotic film were generally highly correlated, in some instances they differed, warranting their inclusion as separate elements in models of female sexual arousal. Furthermore, it might be suggested that the inclusion of an additional variable – absorption – into current models of female sexual arousal would prove beneficial, aiding researchers to better understand and predict the arousal process. As such, recommendations are made for a revised model of female sexual arousal. In terms of future directions, the results of the present thesis have implications for the treatment of sexual dysfunctions, suggesting that clinicians need to understand the internal and external variables that might contribute to the aetiology and maintenance of their presenting problems.

Investigative interviewing of children with intellectual disabilities

This research was designed to examine two broad issues in relation to the investigative interviewing of children (aged 9 to 13 years) with mild and moderate intellectual disabilities. First, how do children with intellectual disabilities perform (relative to children matched for chronological and mental age) when recalling an event in response to various questions? Second, what question types and interview strategies do police officers and caregivers use to elicit accurate and detailed accounts about an event from children with intellectual disabilities? The rationale for exploring each of these issues was to determine possible ways of improving the elicitation of evidence from children with intellectual disabilities. While children with intellectual disabilities constitute a high proportion of all child victims of abuse (Conway, 1994; Goldman, 1994; Morse, et ah, 1970), they rarely provide formal reports of abuse and of those incidents that are reported, few cases progress to court (Henry & Gudjonsson, 1999). Study 1 used a standard interview protocol containing a variety of questions and an interview structure commonly used in investigative interviews. Specifically, the memory and suggestibility of eighty children with either a mild and moderate intellectual disability (M age = 10.85 years) was examined when recalling an innocuous event that was staged at their school. The children's performance was compared with that of two control groups; a group of mainstream children matched for mental age and a group of mainstream children matched for chronological age. Overall, this study showed that children with both mild and moderate intellectual disabilities can provide accurate and highly specific event-related information hi response to questions recommended in best-practice guidelines. However, their recall was less complete and less clear in response to free-narrative prompts and less accurate in response to specific questions when compared to both mainstream age-matched groups. Study 2 provided an in-depth analysis of the types of questions and strategies used by twenty-eight police officers and caregivers when interviewing children with either mild or moderate intellectual disabilities (M age = 11.13 years) about a repeated event that was staged at their school. The results revealed that while the approach used by the police officers was generally consistent with best-practice recommendations (i.e., their interviews contained few leading, coercive or negative strategies), there were many ways in which their approach could be improved. This study also showed that the caregivers used a high proportion of direct and negative strategies to elicit information from their children. Even when caregivers used open-ended questions, their children provided less event-related information than they did to police interviewers. The results of both studies were discussed in relation to current 'best-practice' guidelines for interviewing children and recommendations were offered for improving the quality of field interviews with children who have intellectual disabilities.

Work-related self-efficacy among community residents with psychiatric disabilities

A new measure of work-related self-efficacy for people with psychiatric disabilities is reported. The 37-item scale measures self-efficacy in four relevant activity domains: 1) vocational service access and career planning, 2) job acquisition, 3) work-related social skills, and 4) general work skills. The scale was developed in a 12-month longitudinal survey of urban residents diagnosed with schizophrenia or schizoaffective disorder (n = 104). Results indicate validity of both a four-factor structure differentiating four core skill domains, and a single factor representing total work-related self-efficacy. The favorable psychometric properties support further research and trial applications in supported employment and psychiatric vocational rehabilitation.

Knowledge and understanding of choice diversity of residential care staff working with individuals with intellectual disabilities

The present study aimed to trial the effectiveness of 10 newly developed brief vignettes portraying typical interactions between staff and people with intellectual disabilities in residential care settings to assess the knowledge and understanding of staff about choice diversity, pre- and post-attendance at a staff training workshop. A total of 29 residential staff completed the Vignette Rating Scale and a knowledge questionnaire pre- and post-training. A t- test conducted on the vignettes revealed that respondents identified fewer choices in the post-test vignettes compared to the pre-test vignettes. Results showed no significant difference between the pre- and post-test data on the knowledge questionnaire. The questionnaire revealed a high level of knowledge about choice prior to and following training. The vignettes, however, proved effective in measuring changes in awareness of choice diversity among residential staff following participation in a staff training workshop.

Factors associated with high anticholinergic burden in aging adults with intellectual disabilities:a cross-sectional study

Background: Anticholinergic (AC) medications are associated with cognitive and functional decline in older people, with risk of adverse outcomes increasing with increasing AC exposure. Older people with intellectual disabilities are at increased risk of high AC exposure owing to higher prevalence of multimorbidity, particularly psychiatric morbidities. Objectives: The aims of this study were to determine individual’s AC exposure using the AC cognitive burden (ACB) scale, identify therapeutic classes contributing to burden and determine clinical and demographic factors associated with two levels of AC exposure (ACB score 1–4, ACB 5+). Methods: Cross-sectional (self-report/proxy report)medication data were drawn from Wave 1 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing, a study on ageing of 753nationally representative people with ID aged over40 randomly selected from the National Intellectual Disability Database. Medication data were available for 736 (98%). Each individual’s cumulative AC exposure was calculated using the ACB. Multinomiallogistic regression was performed identifying clinical and demographic factors associated with ACB score1–4, and ACB 5+. Results: In the eligible population of 736 participants(mean (±SD) age 54.1 (±8.8) years,55% female), 522(70.9%) were exposed to an ACB medicine (ACB 1+); 214 (29%) had an ACB score of 5+; mean total ACB score= 4.5 (±3.0). Antipsychotics accounted for35.6% of the cumulative ACB score. Age over 65yearswas associated with increased likelihood of both levels of AC exposure (ACB 1–4—adjusted OR 3.28; 95%CI 1.49–7.25, ACB 5+—adjusted OR 3.08; 95%CI1.21–7.63) and having a mental health condition(ACB 1–4—adjusted OR 9.79; 95%CI 5.63–17.02, ACB 5+—adjusted OR 23.74; 95%CI 12.29–45.83). Conclusions: Using a simple cumulative measure proved an effective means to capture total burden and established that AC exposure was high and associated with older age and mental health morbidity. This highlights need for comprehensive medication reviews for older people with intellectual disabilities.

Challenges to improve inter-professional care and service collaboration for people living with psychiatric disabilities in ordinary housing

The aim of this study was to describe health care- and social service professionals' experiences of a quality-improvement program implemented in the south of Sweden. The focus of the program was to develop inter-professional collaboration to improve care and service to people with psychiatric disabilities in ordinary housing. Focus group interviews and a thematic analysis were used. The result was captured as themes along steps in process. (I) Entering the quality-improvement program: Lack of information about the program, The challenge of getting started, and Approaching the resources reluctantly. (II) Doing the practice-based improvement work: Facing unprepared workplaces, and Doing twice the work. (III) Looking backevaluation over 1 year: Balancing theoretical knowledge with practical training, and Considering profound knowledge as an integral part of work. The improvement process in clinical practice was found to be both time and energy consuming, yet worth the effort. The findings also indicate that collaboration across organizational boundaries was broadened, and the care and service delivery were improved.

Deficiência mental e sexualidade: Perspectivas e atitudes num centro ocupacional e de formação e inserção profissional

Dissertação de Mestrado apresentada ao Instituto Superior de Psicologia Aplicada para obtenção de grau de Mestre na especialidade de Psicologia Clínica.

A rational (unapologetically pragmatic) approach to dealing with the irrational - the setencing of offenders with mental disorders

People with mental impairment are so heavily over-represented in prisons and jails that jails have been labeled “warehouses for the mentally ill.” In many parts of the United States, there are more mentally impaired offenders in prisons than in hospitals for the mentally unwell. Offenders laboring with impaired mental functioning are often regarded as being less morally culpable for their crimes and hence less deserving of punishment. However, the reduced mental functioning of offenders does not diminish the harm caused to victims. People are no less dead if mentally unwell offenders kill them rather than offenders who are mentally sound. This tension has proven an intractable problem for sentencing law and practice. There are no clear, fair, and effective principles or processes for accommodating impaired mental functioning in the sentencing inquiry. It is an under-researched area of the law. In this Article, I explore this tension. Key to ascertaining the proper manner in which to incorporate mental illness into the sentencing system is clarity regarding the importance of consequences to the offender, as opposed to moral culpability. I analyze current approaches to sentencing offenders with mental health problems in both the United States and Australia. Despite the vastly different sentencing regimes in these countries, both systems are deficient in dealing with mentally ill offenders, but for different reasons. I propose a solution to administering sentences to offenders with a mental disorder that is equally applicable to both sentencing systems. Mental impairment should mitigate penalty. However, in determining the extent and circumstances in which it should do so, it is cardinal not to lose sight of the fact that those who are sentenced for a crime are not insane, and they were aware that their acts were wrong--otherwise they would not have been found guilty in the first instance. I argue that a standard ten percent sentencing discount should be accorded to offenders who were mentally disordered at the time of sentencing. There should be an even more substantial discount when it is likely that offenders will find the sanction--in particular imprisonment--more burdensome due to their mental state. This difference would ensure some recognition of the reduced blameworthiness of mentally impaired offenders and the extra hardship that some forms of punishment inflict on mentally *2 ill offenders, while not compromising the important objectives of proportionality and community protection. The only situations when mental disorder should not mitigate penalty are when the offender is a recidivist, serious sexual or violent offender. In these circumstances, the interests of the community are the paramount consideration. The analysis in this paper applies most directly when a term of imprisonment is imposed. However, the reasoning also extends to the threshold decision of whether or not a term of imprisonment should be imposed in the first place.

“I want to see the Queen” : experiences of service use by ageing people with an intellectual disability

People with intellectual disability are a relatively new but growing minority group within Australia's ageing population. Disability policies point to the equal right of people with disabilities to a quality of life similar to that of other citizens. Disability services are increasingly required to provide individualised and responsive services, irrespective of age, for people with lifelong disabilities. The present study explored the everyday lives of older people with intellectual disability in Victoria and Queensland, examining their experiences of using disability services and the ways in which services responded to their ageing. The aim of the study was to inform practice and service development for older people with intellectual disability. The findings suggest that services facilitate important social relationships with other service users and staff. Most older people had a sense of belonging and led busy but directionless lives in two disconnected worlds. Their lives were subject to significant external present-focused control. Yet, despite this, neither services nor family members took responsibility for ensuring their sense of continuity or supporting the development of plans about their future. The experiences described suggest an urgent need for, but significant challenges in the implementation of, holistic indivdualised planning similar to the UK concept of person-centred planning.

Work-related self-efficacy among community residents with psychiatric disabilities

A new measure of work-related self-efficacy for people with psychiatric disabilities is reported. The 37-item scale measures self-efficacy in four relevant activity domains: 1) vocational service access and career planning, 2) job acquisition, 3) work-related social skills, and 4) general work skills. The scale was developed in a 12-month longitudinal survey of urban residents diagnosed with schizophrenia or schizoaffective disorder (n = 104). Results indicate validity of both a four-factor structure differentiating four core skill domains, and a single factor representing total work-related self-efficacy. The favorable psychometric properties support further research and trial applications in supported employment and psychiatric vocational rehabilitation.

Improving adherence physical activity with a smartphone application based on adults with intellectual disabilities (APPCOID)

Background People with intellectual disabilities (ID) have lower levels of physical activity and quality of life and they have a lot of barriers to face when taking part in physical activity. Other problems are the poor adherence to physical activity such people have so this study is designed to improve adherence to physical activity for people with intellectual disabilities with the assistance of an application for smartphones. The aim of the study will be to improve physical activity and physical condition after multimodal intervention and to analyse the promotion of adherence to physical activity through a multimodal intervention and an app intervention (mHealth) in people with ID. Methods A two-stage study will be conducted. In stage 1 a multimodal intervention will take place will be done with physical activity and educational advice over eight weeks, two days a week. Data will be measured after and before the intervention. In stage 2 a randomized controlled trial will be conducted. In the intervention group we will install an application to a smartphone; this application will be a reminder to do a physical activity and they have to select whether they have or haven’t done a physical activity every day. This application will be installed for 18 weeks. Data will be measured after and before the application is installed in two groups. We will measure results 10 weeks later when the two groups don’t have the reminder. The principal outcome used to measure the adherence to physical activity will be the International Physical Activity Questionnaire; secondary outcomes will be a fun-fitness test and self-report survey about quality of life, self-efficacy and social support. Samples will be randomized by sealed envelope in two groups, with approximately 20 subjects in each group. It’s important to know that the therapist will be blinded and won’t know the subjects of each group. Discussion Offering people with ID a multimodal intervention and tool to increase the adherence to a physical activity may increase the levels of physical activity and quality of life. Such a scheme, if beneficial, could be implemented successfully within public health sense. Trial registration ClinicalTrials.gov Identifier: NCT01915381.

Do people with diabetes who need to talk want to talk?

Aim. To examine whether the people with diabetes who ask for psychological support are those who are experiencing clinically significant levels of psychological distress.
Method. In total 300 people with diabetes were asked to complete psychometrically validated questionnaires that assessed subjective need and objective psychological distress.
Results. High levels of psychological distress were reported: 25% of the sample reported depressive symptomatology, 41% reported clinically significant levels if anxiety and 51% reported a degree of binge eating behaviour. Participants also indicated a desire to talk to diabetes professionals about various problem areas in diabetes. Chi-square analysis demonstrated that those reporting psychological distress, especially depression, were most likely to indicate a desire to talk to somebody about living with diabetes.
Conclusions. Those who want to talk are those who need to talk. Future service development issues should acknowledge the needs and expressed wishes of service users.

Changes in the attitudes of GPs to health screening of patients with learning disabilities

GP's appear reluctant to undertake health screening for people with learning disabilities. This article describes a specialist health screening service delivered mainly by community learning disability nurses to nearly 600 children and adults. Prior to the service being established, 141 GPs within a defined area were surveyed and 51% responded. Although a majority thought the service would be helpful, three-quarters felt it was better provided within the context of specialist services. After screening, 54% of the sample (318 persons) were referred to their GP for further assessment and treatment, nearly all for physoical health needs. A second study investigated the attitudes of 91 GPs who had patients refrrered. Those (45) who reported dealing with a referral were more favourably disposed to undertaking health screening within their practice, whereas those (23) who had been uninvolved continued to opt for specialist provision. Options for encouraging more GPs' to offer preventive health care to theisclient group are discussed, including medical training, extra consulting time and linking community learning disbaility nurses with GP practices.