Journal of Intellectual Disabilities recent issues

Learning disability nurse education: An opportunity to contribute to shaping the future?

Barr, O. — 2009-09-28

Service users leading the way: Focus group methodology in developing accessible information DVDs with people with learning disabilities

Boyden, P., Esscopri, N., Ogi, L., Brennan, A., Kalsy-Lillico, S. — 2009-09-28

The English government sees it important to view service users as active partners in the delivery of accessible resources. The current article follows a brief report which described an innovative project on developing an accessible DVD explaining the Birmingham Clinical Psychology Service to people with learning disabilities. The article describes three focus groups involving adults with learning disabilities that met to reflect and evaluate the accessibility of the DVD. This process formed the evaluative phase of the DVD development project where people with learning disabilities evaluated the accessibility, level of understanding, and clarity of the DVD content. The DVD was rated positively by the focus groups, and minor changes were made to the final version of the DVD. The article also reflects upon the use of focus groups as a methodological approach in researching the views of people with learning disabilities.

Acceptance and Commitment Therapy (ACT) with a learning disabled young person experiencing anxious and obsessive thoughts

Brown, F. J., Hooper, S. — 2009-09-28

This case study describes how the ACT model was adapted to treat anxious and obsessive thoughts in a young person with moderate/severe learning disabilities. Using mindfulness and ACT-based experiential activities, the client learned to notice her thoughts and distance herself from their literal content. The negative impact that the client’s anxious thoughts had on her life was reduced and she was able to return to a part-time college course. The article describes how the client engaged with some ACT-based activities, such as mindfulness and defusion exercises. The outcome suggests that the experiential, activity-based nature of ACT may offer a more accessible intervention model for learning disabled people than traditional CBT models based on verbal reasoning skills. However, the intervention also required considerable individual adaptation and it is likely that this will be the case in work with people with learning disabilities.

Patient satisfaction with a hepatitis B vaccination programme among persons with an intellectual disability

Cooney, F. — 2009-09-28

This article demonstrates that a patient satisfaction survey can be carried out to evaluate the acceptability of a hepatitis B vaccination programme among persons with an intellectual disability. In this exploratory study, involving six clients, 41 care staff and three managers of intellectual disability services, core themes were identified on the acceptability of the programme. The following recommendations are made: a respectful attitude should be shown to all clients by the healthcare providers; appropriate information about the programme should be provided that is tailored to the needs and receptive capability of all recipients and their carers; the intervention should be delivered in an environment, and by healthcare personnel, familiar to clients; carers should be attentive to the possibility of adverse effects; and explicit, ethically stringent policies should be in place on the use of physical restraint. The article makes suggestions regarding future work in assessing patient satisfaction among this client group.

Learning to take the world seriously: An ethnographic study of the management of knowledge in a special school for children with intellectual disabilities

Todd, S. — 2009-09-28

This article reports on an ethnographic and sociological study of the curriculum inside a special school for students with severe intellectual disabilities in the UK. There are few such studies since it is the routing of children into the special education system that has been sociologically captivating. Bernstein’s analytical approach to the study of curricula is proposed as useful since it draws attention to the structure of the curriculum and is less concerned with assumptions about its content. It also highlights the social messages that are embedded within the curriculum. The data suggest that two codes were in operation within the curriculum. The first was designed to draw the out-of-school experiences of students into the classroom for greater scrutiny. The second involved the strict regulation of ‘dangerous’ knowledge, that is sexual knowledge. The implications of findings are discussed in relation to curriculum development, self-identity and the strength and nature of social boundaries.

Evaluation of clinical checklists for fragile X syndrome screening in Brazilian intellectually disabled males: Proposal for a new screening tool

2009-09-28

Patients with fragile X syndrome present a variable phenotype, which contributes to the underdiagnosing of this condition. The use of clinical checklists in individuals with intellectual disability can help in selecting patients to be given priority in the molecular investigation of the fragile X mutation in the FMR1 gene. Some features included in checklists are better predictors than others, but they can vary among different populations and with patient age. In the present study, we evaluated 20 features listed in four clinical checklists from the literature, using a sample of 192 Brazilian male patients presenting with intellectual disability (30 positive and 162 negative for fragile X mutation). After statistical analysis, 12 out of the 20 items analyzed showed significant differences in their distributions between the two groups. These features were grouped in a new checklist that can help clinicians in their referral for fragile X testing in patients with developmental delay.

Moving forward ... but are services moving forward together

Barr, O. — 2009-07-23

The reported experience of four women with intellectual disabilities receiving emergency psychiatric services in Canada: A qualitative study

Lunsky, Y., Gracey, C. — 2009-07-23

Hospital emergency departments are not well prepared to meet the needs of individuals with intellectual disabilities. Negative experiences can be very traumatic, particularly when the emergency visit is because of a behavioural or psychiatric problem. A focus group study was conducted in 2005 in Toronto, Canada with four women with intellectual disabilities who had paid repeated visits to their local emergency department due to a psychiatric or behavioural crisis. These women spoke about not feeling respected, the trauma of being restrained physically or chemically, and about hospital staff not being comfortable working with women with intellectual disabilities. Clinical implications are discussed and recommendations are presented to improve the experience of women who require emergency services in the future.

Problems, problems: You are such a problem!

Shaw, S. — 2009-07-23

A learning disability discourse has developed over time and is driven by social policy and professional power. Landmark legislation such as the Disability Discrimination Act 1995 has promoted public accessibility for disabled and disenfranchised people. The social construction of difference and disability contributes to the ways people with learning disability are seen and described by others. Many professionals tell stories about their experiences of working with people who are learning disabled. Some stories construct the people with learning disabilities as heroic and tragic, but most construct them as problems to be solved. This qualitative study demonstrates that learning disability constructions in practice-based stories are not merely postcards from the past but indicators of the present and are a demonstration of the issues facing learning disability nurses. I argue that there are tensions in the way learning disability is constructed and ultimately communicated by learning disability nurses.

Using blended and guided technologies in a university course for scientist-practitioners: Teaching Applied Behaviour Analysis to autism professionals

Roll-Pettersson, L., Ala'I-Rosales, S. — 2009-07-23

Although the incidence of autism spectrum disorders is increasing worldwide, there is a shortage of professionals trained to provide effective interventions. The article describes an advanced university course in Applied Behaviour Analysis (ABA) and autism tailored to meet the needs of Swedish professionals from multiple disciplines. The course implemented both blended-learning technologies (web, telecommunication, and in vivo) and guided-design (problem-solving) exercises to promote the scientist-practitioner model. Overall, students advanced their skills related to identifying extant scientific literature, choosing appropriate single-subject design evaluation methods, and critically analysing the effects of attempted interventions. Students rated the course as having high social validity and predicted the course content would positively affect their professional practice. The relevance of the course and future directions are discussed in the context of meeting the global need for effective autism intervention professionals.

Fostering independence in health-promoting exercise

Lynnes, M. D., Nichols, D., Temple, V. A. — 2009-07-23

The Integrated Model of Physical Activity and Disability was used to design a strength and aerobic exercise program for adults with intellectual disability participating in Special Olympics. This study examined the extent to which four participants could acquire exercise skills in a face-to-face context and apply these skills at home with indirect support. Adherence to the program, as well as program satisfaction, was examined. Participants were able to acquire the strength skills and most were able to use these skills at home with minimal support. The participants liked the approach, in particular the individualized planning and follow-up via telephone calls. These participants were able to use an exercise DVD independently at home and three of the four participants showed a threefold increase in exercise frequency. The utility of the approach lies in the capacity to extend the reach of face-to-face programs beyond tangible constraints such as facilities and staff availability.

A survey of learning disability inpatient services in Scotland in 2007

Perera, C., Simpson, N., Douds, F., Campbell, M. — 2009-07-23

A national review of learning disability services in Scotland, The Same As You? recommended that Health Boards should close all long stay beds by 2005 and reduce assessment and treatment places to specified levels. A psychiatry-led service planning study was carried out in 2007 to find out whether these recommendations had been met. The extent of delayed discharges was also investigated. All 15 Health Boards in Scotland responded and supplied the requested information. There were 388 adults with learning disabilities within inpatient services, 91 of whom were within forensic learning disability services. The age, gender, reasons for admission and length of stay are reported for this inpatient population. Recommendations are made for future recording of delayed discharges and the adequacy of the number of assessment and treatment inpatient places in Scotland is discussed.

This issue

Barr, O. — 2009-03-30

Teaching children generalized imitation skills: A case report

Brown, F. J., Peace, N., Parsons, R. — 2009-03-30

Generalized imitation plays an important role in the acquisition of new skills, in particular language and communication. In this case report a multiple exemplar training procedure, with an errorless learning phase, was used to teach Ben, a 13-year-old child with severe intellectual disabilities, to imitate behaviours modelled by an adult instructor. After exposure to seven multiple exemplars, Ben learned to imitate novel actions to criterion (i.e. generalized imitation). These skills were maintained at 90 percent at 6 week and 18 week follow-up. In line with earlier research, this article provides some further support for the finding that multiple exemplar training can facilitate the reliable emergence of generalized imitation skills. Topographically similar behaviours during the learning phase can be difficult to discriminate and hence can slow the learning process. Future research could explore how generalized imitation supports the development of basic communication and activity skills.

People with intellectual disabilities as bloggers: What's social capital got to do with it anyway?

McClimens, A., Gordon, F. — 2009-03-30

The concept of social capital, the socially constructed category of intellectual disability and the social practice of blogging may appear initially to be unconnected. In this study we report on an attempt to link the three as we examine the consequences of giving a group of people with intellectual disability supported access to the Internet and specifically to that section of cyberspace known as the `blogosphere'. Using the Social Capital Question Bank as a framework, we interrogate the data in an attempt to discover whether the qualities associated with successful inclusion within society might be available via the blogging community. Along the way we touch on issues related to policy, daily life and who or what counts as a friend.

A survey of clinical nursing skills in intellectual disability nursing

McKeon, M. — 2009-03-30

In this study the question asked is: what clinical nursing skills are predominantly used in intellectual disability nursing? A survey of the nursing needs of people with moderate to severe intellectual disability in both residential and community units was undertaken with a questionnaire. The measure was a Likert design scale ranging across: skills used more than once a day, skills used daily, skills used weekly, skills used monthly, skills very rarely used, and skills never used. The results of the study help to identify, plan, and direct the type and level of nursing skills taught to the intellectual disability nursing students and provides an insight into the current nursing skills used in the intellectual disabilities field.

Building psychological resilience in support staff caring for people with intellectual disabilities: Pilot evaluation of an acceptance-based intervention

Noone, S. J., Hastings, R. P. — 2009-03-30

Support staff in intellectual disability services may experience significant work-related stress. The aim of the present study was to pilot an intervention called the Promotion of Acceptance in Carers and Teachers (PACT). Fourteen staff provided data on work stress and general wellbeing before and after attending PACT workshops over 1.5 days. A waiting list control subgroup of six staff also completed measures over a 6 week period. Support staff distress reduced significantly from pre-intervention to follow-up, whereas their reports of work-related stressors increased slightly. Psychological wellbeing and work stress did not change over time in the waiting list sample. Although the study is not tightly controlled, these pilot data suggest that the PACT may have a beneficial effect on staff wellbeing whilst not necessarily directly reducing experience of work stress. Thus, the PACT shows promise as a means of developing psychological resilience in support staff.

Instruments for the detection of depressive symptoms in people with intellectual disabilities: A systematic review

Perez-Achiaga, N., Nelson, S., Hassiotis, A. — 2009-03-30

Affective disorders, particularly depression, are common in adults with intellectual disabilities. However the detection of these disorders is hindered by the varied presentation of depressive symptoms across the range of intellectual disability. We undertook a systematic review of the available English-language diagnostic instruments for depressive disorders for adults with all levels of intellectual disability. We appraised the studies based on the instruments' psychometric properties, sensitivity and specificity. We included 21 of 28 identified studies which contained original data on validity and reliability; the `gold standard' ranged from clinical opinion to other established instruments, some of which had limited validation in people with intellectual disability. In view of the benefits of psychological treatments for common mental disorders, it is important to develop instruments to be used in monitoring cognitive as well as behavioural outcomes for people with intellectual disability and depressive disorders.

Learning for health and sharing successes

Barr, O. — 2008-12-15

The relationship between challenging behaviour and mental ill-health in people with intellectual disabilities: A review of current theories and evidence

Allen, D. — 2008-12-15

Challenging behaviours and problems of mental ill-health are common amongst people with intellectual disabilities. The article examines conceptual similarities and differences between these conditions, examines the data on comorbidity, and explores possible hypothetical relationships between behavioural and psychiatric disorder in this population. While there is little evidence at present to suggest that many of the challenging behaviours seen in people with intellectual disabilities are underpinned by problems of mental ill-health, only qualified conclusions are possible because of limitations in the quality and scope of existing research. A conceptual model for looking at the risk variables that may contribute to both conditions is suggested, and requirements for future research and current multi-disciplinary practice are outlined.

`It's OK for people to feel angry': The exemplary management of imminent aggression

Duperouzel, H. — 2008-12-15

Ward managers working in a medium secure learning disability service were asked to identify members of staff who they believed to be superior in the management of violent and aggressive individuals. A grounded theory approach was used to interview staff about their management of imminent aggression. The participants explained their strategies in terms of the following eight themes, which were common to all interviews: safety and de-escalation, attribution and control, relationships, understanding and empowerment, anticipating reactions, creating a faÇade, communication, and humour. The participants described the importance of building up trusting relationships with clients when trying to understand the reasons for the client's behaviour. They also explained how they offer a `get-out clause' to the client, a way for the client to decide to calm down without losing face. The participants also reported that creating the appearance of being in control can help, as does the use of humour to aid communication.

Following up Fighting Fit: The long-term impact of health practitioner input on obesity and BMI amongst adults with intellectual disabilities

Chapman, M. J., Craven, M. J., Chadwick, D. D. — 2008-12-15

This article presents findings on the long-term impact of health practitioner input to reduce obesity amongst adults with intellectual disabilities. Body mass index (BMI) was measured for an input group (N = 33) and a comparison group (N = 40) 6 years after the input group first received input. Data on BMI were collected at baseline, 6 months, 1 year and 6 years. Mean BMI for the input group reduced steadily over 6 years. Mean BMI in the non-input group rose initially, stabilized and then decreased (although remaining higher than at baseline). The input group demonstrated improvements in obesity levels and lost more weight than the non-input group. However, the differences between groups did not reach statistical significance. This and the improvements in BMI within the non-input group may be due to the relatively small sample size, effect size and the impact of other local initiatives.

Intellectual disability in homeless adults: A prevalence study

Oakes, P. M., Davies, R. C. — 2008-12-15

There has been considerable recent interest in the health and associated socio-economic inequalities faced by adults with learning disabilities. A serious and so far under-reported aspect of this is homelessness. This study sought to determine the prevalence of intellectual disability in a homeless population. Fifty people registered at a general practice in north-east England for socially excluded groups, and staying in temporary accommodation for the homeless during 2006—7, were assessed for learning disability. Full-scale and verbal IQ scores for the group were significantly lower than would be expected in the general population, but there was no significant difference in performance IQ. Homeless people are significantly more likely to have an intellectual disability than the general population. The implications for practice and policy development are far reaching. Further work is required to confirm these findings and to explore the experience of homeless people with intellectual disability.

Forthcoming events

Mcnally, S. — 2008-12-15