Learning Disabled Population Research Articles

Writing Disabilities in Spanish-Speaking Children: Introduction to the Special Series

This special issue of the Journal of Learning Disabilities focuses on studies of writing disabilities in Spanish-speaking children. The World Health Organization (2001) included writing difficulties as one of the problems considered to constitute an impediment to school participation, a significant element in the normal developmental process of the child. In this introduction, I describe the background of a larger project promoted by the United Nations Educational, Scientific and Cultural Organization (UNESCO). This special series offers recent findings on writing disabilities in Spanish-Speaking children within the UNESCO project. The pilot study was carried out in the Canary Islands, an autonomous Spanish region located between three continents and composed of seven islands in the Atlantic Ocean. Most of the current empirical evidence on writing disabilities comes from English, a language with deep orthography; therefore, it is very relevant to investigate the writing process in Spanish, a language with shallow, fine-grained orthography. Included are a number of articles that form a conspectus on writing disabilities in the Spanish language. Topics center on early grade writing assessment, prevalence of writing disabilities, handwriting and keyboarding, transcription and text generation, graphonomic and handwriting analysis, and instructional practices with an learning disabled population.

Prevalence of Behavioural and Psychological Symptoms of Dementia in Individuals with Learning Disabilities.

A review of 23 studies investigating the prevalence of Behavioural and psychological symptoms of dementia (BPSD) in the general and learning disability population and measures used to assess BPSD was carried out. BPSD are non-cognitive symptoms, which constitute as a major component of dementia regardless of its subtype Research has indicated that there is a high prevalence of BPSD in the general dementia population. There are limited studies, which investigate the prevalence of BPSD within individuals who have learning disabilities and dementia. Findings suggest BPSDs are present within individuals with learning disabilities and dementia. Future research should use updated tools for investigating the prevalence of BPSD within individuals with learning disabilities and dementia.

Process evaluation in drugs trials within adult learning disability populations: a systematic review

The majority of RCTs focus on outcomes rather than on the processes involved in implementing an intervention. Process evaluations within trials examine not only the implementation but also the receipt and setting of an intervention which aids the interpretation of outcome results. Currently, process evaluations tend to be the domain of ‘complex interventions’ in health and public health research rather than drugs trials (CTIMPs). CTIMPs tend to be thought of as more ‘simple’ interventions having linear pathways from the intervention to the outcome. However, as pharmacological interventions move past early stage research and are rolled out into practice, their implementation shifts to becoming complex in nature. This is particularly true when implementing interventions in populations where neurodevelopmental impairments mean an individual may lack capacity. Parents/carers looking after the best interests of such individuals effectively become extra ‘layers’ through which the intervention needs to be administered. This added degree of complexity is something which is perhaps not routinely addressed. This systematic review is of drug trials that have been carried out in adult populations with neurodevelopmental impairments which incorporat a process evaluation element. A systematic search of PsycINFO, EMBASE, MEDline, CINAHL and the Cochrane Central Register of Controlled Trials will be undertaken. The aim being to identify existing methods of evaluating interventions and provide a qualitative narrative of these. Results will be used to develop the approach taken to later stage CTIMPs particularly in this population and to explore the potential for a new framework for evaluating interventions of this nature.

Psychosocial impact of involvement in the Special Olympics

Existing evidence suggests that people with intellectual disabilities are vulnerable to low self-esteem leading to additional psychosocial issues such as social exclusion and stress. Previous research into the involvement of Special Olympics (SO) of people with intellectual disabilities has indicted positive psychosocial outcomes. Involvement in sport is known generally to have psychological and social benefits. This study aimed to compare the psychosocial impact of involvement in sport through the SO to no or limited sports involvement, for a sample of people with intellectual disabilities. A cross sectional design was employed comparing three groups, SO, Mencap Sports, and Mencap No Sports on the variables: Self-esteem, quality of life, stress levels and social networks. One hundred and one participants were recruited either through the SO or Mencap. Data were collected through the completion of validated questionnaires by one to one interviews with the participants. Analysis revealed that self-esteem, quality of life, and stress were all significantly associated with SO involvement. Logistic regression analysis was used to explore whether scores on these variables were able to predict group membership. Self-esteem was found to be a significant predictor of group membership, those in the SO having the highest self-esteem. The findings provide further evidence of a positive association between sport involvement and increased psychological wellbeing, especially for those involved in the SO. The implications of these findings for practice and future research into the relationship between sport and psychological wellbeing within the learning disabled population are considered.

Problems with oral formulations prescribed to children: a focus group study of healthcare professionals.

There is evidence to suggest that adherence with prescribed medication is lower amongst adolescents and children than in adults. Medication adherence rates between 11 and 93 % in paediatric patients have been reported. More research needs to be carried out in order to understand why medicines adherence is low and how adherence can be improved in children with long-term conditions. Personal communication with paediatricians in secondary care has highlighted that problems are most likely to be encountered by parents, carers, nurses and children themselves when administering medicines for prevalent long-term childhood conditions. To explore problems with oral medicines prescribed to paediatric patients from the perspectives of medical practitioners, pharmacists and nurses. Setting Two NHS trusts in the West Midlands, UK. Four focus groups (FG) were conducted. Five nurses, eight medical practitioners and six pharmacists participated in focus groups. The themes explored were problems experienced when prescribing, dispensing and administering oral medicines for children. Main outcome measure Themes evolving from Healthcare professionals reports on problems with administering medicines to paediatric patients. Two main themes: sensory and non-sensory emerged from the data. Included within these were taste, texture, colour, smell, size, swallowing, quantity, volume and manipulation with food. Taste was the most commonly reported barrier to medicines administration. Texture was reported to be a significant problem for the learning disability population. Medicines manipulation techniques were revealed across the groups, yet there was limited knowledge regarding the evidence base for such activity. Problems surrounding the supply of Specials medicines were discussed in-depth by the pharmacists. Organoleptic and physical properties of medicines are key barriers to medicines administration. A robust scientific evidence-based approach is warranted to inform standardised protocols guiding healthcare professionals to support safe and effective medicines manipulation across all settings. Pharmacists' knowledge of Specials medicines needs to be recognised as a valuable resource for doctors. Findings of this study should help to optimise paediatric prescribing and direct future formulation work.

G413(P) Problems with the administration of oral formulations to children: Perspectives of medical practitioners, pharmacists and nurses

IntroductionThere is limited evidence regarding healthcare professionals (HCP)s knowledge of issues with medicines administration in paediatric patients with chronic conditions. The few studies that have been conducted have included HCPs...

Hearing problems in the learning disability population: is anybody listening?

Accessible summary people with learning disability tend to have more hearing problems than other people. often these hearing problems are not picked up by doctors, nurses, carers or even by the people themselves. living with undetected hearing loss means people miss out on information, social opportunities and entertainment. routine screening for hearing loss would improve the lives of many people with learning disability. SummaryWe undertook this project because we believed that hearing loss experienced by the target population was greater than the referral figures suggested. Therefore, we set up a trial service initiative designed to examine the efficacy of different referral routes into audiology services for adults with learning disability. This retrospective analysis focuses on the generation of data on hearing loss on a small population sample (n = 136) gathered over a 6‐month period in 2012. We suggest remedial action now to prevent more problems in the future.

Barriers to access to cancer screening for people with learning disabilities: a review

BackgroundThe life expectancy of people with learning disabilities is increasing. Nowadays, mean life expectancy is estimated to be 74, 67, and 58 years for those with mild, moderate, and severe learning disabilities, respectively. The incidence and pattern of cancer among people with learning disabilities is rapidly changing, partly because of increased longevity and the lifestyle associated with independent living. There is strong evidence that the uptake of preventive services such as immunisation and screening is low among people with learning disabilities. Many studies have reported low uptake of screening activities, including cervical smear tests, breast self-examinations, and mammography, by people with learning disabilities. This study aimed to explore the barriers to access to cancer screening for people with learning disabilities and the effectiveness of interventions to improve uptake to cancer screening for them. MethodsA mixed-method review was undertaken, including both qualitative and quantitative research methods in the search. I did searches in June, 2012, using the British Nursing Index, CINAHL, Embase, HMIC, Medline, PsycINFO, and Social Science Citation Index via Web of Knowledge. I did not attempt to assess the grey literature. The studies to be included used participant adults, men and women, who had a learning disability (mild, moderate, or profound). All types of cancer for which there is a national UK cancer screening programme in place were included: breast, cervical, and bowel. Non-cancer screening programmes were excluded. Studies examining the increase of uptake of cancer screening programmes in adults without a learning difficulty or learning disability were excluded. Studies seeking to assess the effectiveness of interventions to increase the uptake of cancer screening programmes for this population were included. Those examining the barriers faced for people with learning disabilities accessing cancer screening programmes were included. Study design was not limited to randomised controlled trials; case-control and cohort studies and non-experimental designs were included. One reviewer searched and reviewed all abstracts and papers. Searches returned 28 unique results. The titles and abstracts of these papers were reviewed, 12 were selected for retrieval. Of the 12 papers reviewed in full, seven were included in the review. Reasons for rejecting studies were that the studies were related to the genetic screening of learning disabilities, cancer, or both; were on incidence of cancer in the learning disabled population; or cited cancer or learning disabilities as comorbidities for another intervention under study. The quality of each study was assessed with one of two methods dependent on the nature of the study. FindingsOne quantitative and six qualitative studies were identified. The studies ranged in quality; all included studies were deemed sound, but the quality scores varied across the range of study designs. The quantitative study used one-to-one counselling as an intervention to improve uptake of cervical screening. The qualitative studies used a mixture of qualitative methods to gather data on the barriers perceived by women with learning disabilities, their carers or support staff, or staff involved in cancer screening services. Thematic analysis of the qualitative studies was undertaken and three key themes of the perceived barriers were identified: scarcity of information, fear of medical intervention, and embarrassment. InterpretationThe evidence for strong interventions to reduce the barriers to access to cancer screening for people with learning disabilities is very weak, but the evidence about what barriers do exist is stronger. Interventions to tackle these barriers need to be developed and assessed to contribute to the evidence base in this area. It is important that steps are taken to improve the services available for people with learning disabilities as life expectancy and therefore cancer risk increases. FundingNone.

P168 Learning disabilities and palliative care: Building bridges – supporting care

Palliative care for people with learning disabilities (PWLD) is often complex but it is vital that these challenges are faced. It is also important to recognise that life limiting illness...

Assessment of Gross Motor Proficiency in Children with Learning Disability

Background: A growing body of literature suggests that deficits in motor skill performance exist in the learning disabled population.10 Subjects: 30 learning disabled children, 30 normal children Method: Gross motor skills of the learning disabled and normal children were assessed using Motor Skills Inventory. A comparison of the gross motor skills was done between the two groups. Conclusion: The children with learning disability seem to have a delay in development and maturity of gross motor skills.

Assessment of nutritional knowledge of learning disability support workers

Background: People with Learning Disabilities (LD) are one of the most vulnerable groups in Britain (DOH, 2001). The Disability Rights Commission (2006) found that one in three people with LD are obese compared with one in five of the general population. As the learning disability population move from institutional care into community residences, nutrition is an increasingly important issue. Food is no longer prepared in kitchens by catering staff and clients are more dependent on support workers for the provision of their food. Several studies have examined nutritional education and the impact this has on service users although few have assessed the nutritional knowledge of learning disability support workers. The aim of this study was to assess the nutritional knowledge of learning disability support workers in the community setting. Methods: In this cross-sectional survey, managers of seven community homes within a locality of Manchester were approached and agreed for staff to participate in the study. In total 60 questionnaires were distributed. The questionnaire was adapted from a validated assessment tool (Pamenter and Wardle, 1999) with the addition of questions that assessed knowledge of the Eatwell plate, food groups and food labelling. Questionnaires were collected 2 weeks after distribution. All data were coded and analysed using SPSS 16 (SPSS Inc., Chicago, IL, USA). Descriptive statistics of incidence and % correct response were used to examine the data. Independent t-tests were used to compare differences between the answers of those who had received previous training and those who had not. Ethical approval was gained from Leeds Metropolitan University research ethics committee. Results: The response rate was 42% (n = 25) and of this group 44% (n = 11) had received previous nutrition training. The questionnaire revealed a lack of nutritional knowledge, the most notable of which was knowledge of the Eatwell plate (8% were aware of the plate model and 4% correctly stated all food groups); food portion sizes (36% correctly stated the portion size of fruit, vegetables and dairy foods and 32% the portion size of meat); food labelling (28% correctly stating the saturated fat content regarded as ‘high’). There was no statistical significant difference between the answers of those who had previous training and those who did not. Of respondents, 88% indicated that they would benefit from nutritional training and 48% did not feel confident with their current nutritional knowledge. Discussion: Lack of nutritional knowledge of key workers within the care setting is of concern. Service users frequently rely on their support workers for menu planning and food provision. Coronary heart disease is the second most common cause of death in people with LD and lack of knowledge of fat recommendations is an important area of focus for the future. Support workers themselves welcomed further input and the apparent lack of difference in nutritional knowledge between those who have received previous training compared to those without, suggests that this should be ongoing. Conclusions: The nutritional knowledge of learning disability support workers in the community setting is poor and nutritional education programmes are now required to develop the nutritional knowledge of staff and evaluate their subsequent impact on clients with learning disability.

A systematic review of the effectiveness of weight management interventions in adults with learning disabilities

Background: The increased prevalence of overweight and obesity in adults with a learning disability (LD) was highlighted by the Disability Rights Commission report (DRC 2006) as causing significant health risk and major health problems. The report called urgently for the development of evidence-based guidelines of effective weight loss methods for this target group, NICE (2006) guidelines similarly require clinicians working in weight management to promote interventions that are effective and evidence-based. Despite one review no systematic reviews in this area existed, thus the aim of this research was to systematically review current literature on weight management interventions for adults with LD to identify effective interventions. Method: A comprehensive, systematic search of the literature was conducted (via Academic Search Complete, AMED, CINAHL, Cochrane, Medline, PsycINFO and SCOPUS's electronic bibliographic databases) using key terms, and supplemented with hand searching of key journals, references and citations. Inclusion and exclusion criteria were applied to studies identified. Studies were included if they examined one or more weight management interventions recommended by NICE (2006): diet, physical activity, behavioural interventions, anti-obesity medication or bariatric surgery, in adults with a LD. Exclusion criteria were a mixed population, weight loss not reported and diagnosis of Prader-Willi Syndrome. The literature was assessed for quality using the validated Critical Appraisal Skills Programme tools (Public Health Resource Unit 2006) and the data synthesised for evaluation. Results: A total of 11 studies were identified: six quasi-experimental trials and five pre-experimental studies, no studies of anti-obesity medication or bariatric surgery were found. Weight loss was modest across all types of interventions; only one study showed clinically significant weight loss of 5–10% but had poor external validity and thus was not able to be generalised to the wider LD population; one study provided low level evidence for weight maintenance however did not demonstrate clinically significant weight loss. The overall quality of evidence reviewed was judged to be poor. Discussion: With the exception of one study, findings indicated modest, clinically insignificant weight loss which falls short of weight loss achieved by the general population using the same interventions, suggesting further adaptation to the programmes may be needed. However, the research reviewed has major methodological flaws relating to the research design, absence of randomisation, limited use of control groups, studies which are underpowered and insufficient long-term follow-up. Future research should take account of these flaws and also give greater consideration to the heterogeneity of this population with regards to inclusion criteria and analysis in order to draw out more useful conclusions for practice. Conclusion: There was insufficient evidence to support the effectiveness of currently recommended interventions for weight loss and weight maintenance in adults with LD and a need for further high quality research to inform clinical practice and decision-making in this area, thereby improving the long term health and well-being of this population.

P03-590 - Do we care enough about epilepsy in learning disability inpatient population?

IntroductionEpilepsy is a common neurological condition affecting 1–2 percent of the population. At least 3,50,000 are affected in the UK, one quarter of whom have active epilepsy. There is higher representation of epilepsy in estimated 1.2 million learning disabled population in the UK. Rough estimates predict some 5 percent of such population are in institutional care; 30 percent requiring medical attention.ObjectivesLighthouse Healthcare provides inpatient tertiary care services to Learning Disability population with complex needs. A sizeable proportion of the inpatient population has complex and refractory epilepsy. As the services are provided at various hospital sites, we wanted to review the care of all the patients with epilepsy and compare it with national standards as set by the National Institute of Health and Clinical Excellence in England and Wales (NICE).AimsAs most of the patients were already diagnosed elsewhere, we reviewed the medical records and compared the care with the standards envisaged in the NICE guidelines on the management of Epilepsies.MethodsWe contacted the Clinicians responsible for the care of all current inpatients and identified the cohort with epilepsy. We then reviewed the medical records for their conformity with NICE recommendations.ResultsBesides missing records, we identified that there were major deficiencies in recording the breakthrough seizure activity as well as epilepsy review on yearly basis either by general practitioner or in specialist clinics.ConclusionsThe care provided to this vulnerable group falls short of standards expected in a secondary/tertiary care setting.

Screening for mental health problems in adults with learning disabilities using the Mini PAS‐ADD Interview

Accessible summaryThis study interviewed the key workers of 96 adults with learning disabilities using the Mini PAS‐ADD Interview to identify whether they had a potential mental health problem. Prevalence rates of mental health across the UK and in other countries have been published but such figures are not known in Northern Ireland. This study found: 33.3% of the sample was identified to have a potential mental health problem. This sample was found to score higher on the sub‐scales of depression and psychosis compared with other prevalence studies. The community informants (i.e. nurses and social workers) were found to be competent in using the Mini PAS‐ADD Interview as identified by the sample of in‐depth psychiatric interviews undertaken by a psychiatrist. SummaryPrevalence rates vary considerably regarding the mental health of people with learning disabilities. This variation is a consequence of the assessment methods used to identify such clinical conditions and also different populations studied. The aim of this study was to screen for mental health problems in adults with mild‐to‐moderate learning disabilities. This study took place in one region of the UK providing community‐based services to 96 adults with mild‐to‐moderate learning disabilities. Using the Mini PAS‐ADD Interview schedule, a number of specifically trained interviewers, interviewed staff who supported these adults with learning disabilities in their particular work/day care setting to determine whether or not participants had a potential mental health problem. This study found a 33.3% prevalence rate of mental health problems in this community sample. This sample was found to score higher on the sub‐scales of depression and psychosis compared with other prevalence studies. The Mini PAS‐ADD Interview was found have an overall sensitivity of 1 (100%); its specificity was 77%. The results of this study fall between previous community prevalence studies that range from 14% to 50%. The practical issues of the screening process are discussed. Methodological limitations are also highlighted in accurately predicting prevalence rates of mental health problems in the learning disability population by clinical staff.

Trauma and post‐traumatic stress disorder (PTSD) in a high secure forensic learning disability population: future directions for practice

Literature on trauma and post‐traumatic stress disorder (PTSD) has neglected the needs of people with intellectual disability, particularly those in forensic settings. The National Centre for High Secure Learning Disability Services at Rampton Hospital conducted a service evaluation on aspects of trauma experience and post‐trauma symptoms in the current population. File information and self‐reports indicated that most individuals had experienced a great deal of lifetime trauma, typically multiple types of abuse. A high rate of potentially trauma‐related symptoms was noted in files. However, file records of potentially traumatic events, including abuse, were often lacking in detail. There was limited information about the events themselves, and there was no information to suggest that any trauma‐specific assessments had been used to measure trauma exposure or symptoms. PTSD as a diagnosis was rarely considered, and there was little consideration of trauma‐specific interventions. While some individuals said that their experiences had resulted in a lot of distress, others could not talk about the past at all. This paper discusses the problem of assessing past trauma and response in a forensic intellectual disability population, and future directions for practice in forensic services. The service under study plans to address the needs of patients who have experienced trauma and abuse by conducting routine structured assessments, offering adapted evidence‐based psychological interventions where appropriate, and providing trauma‐specific education for staff to promote a compassionate approach.

Another joint statement regarding learning disabilities, dyslexia, and vision—A rebuttal

Several medical organizations have published yet another joint statement trivializing vision therapy and vision disorders in the learning-disabled population. A review of the references in the joint statement as well as other references find that the joint statement is misleading because of inappropriate citations and selected references, as was the case with previous joint statements. The most current joint statement ignores the results of evidence-based research and makes recommendations regarding the treatment of convergence insufficiency that have no scientific validity. Ophthalmology should not allow professional rivalry to cloud its judgment regarding optometry's involvement in the diagnosis and treatment of learning-related vision problems.

Evaluation of anger management groups in learning disability populations

Evaluation of anger management groups in learning disability populations

MHiLD: a model of specialist mental health services for people with learning disabilities

There are high rates of emotional, behavioural and psychiatric problems (Cooper et al, 2007) in the learning disability population. This paper describes the Mental Health in Learning Disabilities (MHiLD) service for adults with learning disabilities in four South London boroughs. This service has been in operation in two South East London boroughs from 1982, and was extended to a third in 1999 and a fourth in 2006.

Comparative survey of comorbidities in people with learning disability with and without epilepsy

Aims and MethodTo ascertain the prevalence of epilepsy and understand the differences in the comorbidities of non-epileptic and epileptic patients with learning disabilities. A simple comparative survey was undertaken between the two main groups of patients: non-epileptic and epileptic.ResultsThe prevalence of epilepsy in the study group was 30%. A total of 70% of patients with any type of challenging behaviour were in the non-epileptic group compared with 59% in the epileptic group. Depression was the most common diagnosis in both groups, being slightly more in the non-epileptic group.Clinical ImplicationsOur study suggests that there is no association between epilepsy and the prevalence of challenging behaviour of psychiatric conditions within the learning disabilities population.

People with a Learning Disability and Dysphagia: A Cinderella Population?

Dysphagia has been linked to many medical conditions but most studies are performed on mainstream populations, i.e., not those with dementia or other conditions with intellectual disability (U.S.) or learning disability (UK). Why this is so is perhaps rooted in arcane attitudes about participation in research and informed consent of so-called vulnerable populations, in addition to the usual research challenges that beset us all. This lack of knowledge undermines service planning and health-care provision for a considerable group of people who make up an increasing part of our caseloads. The signs and symptoms of swallowing problems in this population include coughing on food or drink or saliva accumulation, drooling, choking, difficulty triggering a swallow, chest infections, weight loss, dehydration, malnutrition, aversion to food, behavior changes, difficulties chewing, rushing food or long mealtimes, and difficulty taking medication. The problem with the learning disability population is that often these signs are attributed to the learning disability, not to a fundamental problem with the biomechanics of swallowing, i.e., diagnostic overshadowing. Health risks for people with learning disabilities include chest infections, chronic lung disease, asphyxia, obstructive sleep apnea, and hypoxemia in oral feeding [1–3]. Severe, chronic chest problems or choking can result in death [4]. Respiratory infection is a very common cause of death for people with learning disabilities. One study cites respiratory infection as a cause of death for 52% of adults with a learning disability [5]. Clearly there is overlap with our traditional world of dysphagia. There are no reliable reports on the prevalence of dysphagia in children or adults with learning disabilities. There are estimates of the proportion of people with learning disabilities who have dysphagia within restricted populations. These estimates vary from 36% [6] based on speech-language pathology caseload reports to 73% of an in inpatient population over 10 years ago [1]. More recently in the UK the National Patient Safety Agency [7] has identified dysphagia as one of five key risk areas for people with learning disabilities. They also identified that illness and disease in people with learning disabilities can be misor undiagnosed. When considering dysphagia within this framework, it should be acknowledged that estimates of the prevalence of dysphagia do not adequately represent true prevalence figures. In people with cerebral palsy, dysphagia is reported to be widespread, particularly in those who have profound and multiple learning disabilities. Again, figures vary due to different methodologies and different populations, but it P. Leslie (&) Communication Science and Disorders, University of Pittsburgh, 4033 Forbes Tower, Pittsburgh, Pennslyvania 15260, USA e-mail: pleslie@pitt.edu