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Purpose: This paper aims to describe the outcomes of the use of the Quality Outcome Measure for individuals with dementia (QOMID) within a dementia pathway for people with Down's syndrome (DS). The QOMID is a tool for clinicians to use with 17 outcome domains, each with descriptors for early, mid and late stage dementia, rated on a four point scale from rarely achieved for the person (1) to consistently and completely achieved for the person (4). Design/methodology/approach: Data from first time use of the QOMID with 49 people with DS and dementia was analysed to determine if specific outcome domains are more achievable than others, if this differs by stage of dementia and what recommendations are suggested. Findings: Results suggest that there were significant differences in achievability across the domains but that achievability did not vary between early and mid-stages of dementia. The themes with most recommendations were: quality of paperwork and documentation; improving communication with the person with DS and dementia; and working together with health and social care professionals. Practical implications: Results suggest that outcomes which fall outside of the typical learning disabilities skillset and are dementia specific are being achieved less often. Primarily, recommendations focused on practical solutions such as using visual timetables to communicate with the person and adapting their environment. Further work on integrating the QOMID and stage-related team training for care staff is underway. Originality/value: To the best of the authors' knowledge, this is the first detailed analysis of the use of the QOMID in clinical practice with people with DS and dementia. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to describe the development, use and evaluation of a web-based mental capacity assessment tool (MCA WAT) within the Learning Disabilities division of a Mental Health and Learning Disabilities Trust in England. Design/methodology/approach: The MCA WAT was developed to ensure there was contemporaneous recording of each capacity assessment; help staff improve their knowledge, confidence and satisfaction in completing assessments of capacity; and analyse the number and type of capacity assessments completed. Three questionnaires were developed: a 12-item multiple-choice knowledge questionnaire, a nine-item confidence questionnaire and a 10-item satisfaction questionnaire, which reflect the five core principles of the MCA (2005). Eight-five health and social care staff who were trained to use the MCA WAT and had used it at least once had their scores from pre- and post-use of the questionnaires analysed using Wilcoxon signed-ranks tests. Data on the use of the MCA WAT was analysed. Findings: Results showed a significant increase in knowledge, confidence and satisfaction from pre- to post-questionnaires. Concerns remain regarding staff understanding of who is the decision maker and the use of communication aids to enhance capacity. These issues are being addressed through training and updating the information boxes in the MCA WAT. The MCA WAT has been used to complete 3,645 capacity assessments over a five-year time scale, covering a wide range of decisions. Originality/value: This project demonstrates the effectiveness of a contemporaneous method of conducting and recording MCA assessments. [ABSTRACT FROM AUTHOR]

To explore the effects that impaired ability to sit-to-stand has on upright mobility and self-care in children with cerebral palsy and how this in turn may affect their caregivers. A mixed methods research design was conducted with 25 children who had cerebral palsy with moderate to high mobility limitations (GMFCS levels III and IV) and their caregivers. Caregivers were interviewed about their child's mobility and self-care. The independence of each child's activities was rated using the mobility and self-care domains of the Functional Independence Measure for Children (WeeFIM). Two themes were identified from qualitative analyses: Difficulty in sit-to-stand was perceived by caregivers to reduce their child's ability to independently and safely perform mobility and some self-care tasks; and negatively impacted the caregivers physically and psychologically. Mobility and self-care WeeFIM scores showed that these children required moderate assistance, and that self-care tasks involving sit-to-stand (toileting and bathing) required more assistance than self-care tasks that would not be expected to involve sit-to-stand (eating and grooming). Qualitative and quantitative findings were convergent. The ability to sit-to-stand independently may be an important precursor skill for independence in upright mobility and self-care for children with moderate to severe mobility limitations. [ABSTRACT FROM AUTHOR]

To explore caregiver perceptions about the outcomes and feasibility of a high repetition sit-to-stand home-based exercise program on themselves and their children with cerebral palsy who have mobility limitations. Face-to-face semi-structured interviews were conducted with 19 caregivers (17 women, mean age 39 y 6 mo (SD 8 y 4 mo) of 19 children with cerebral palsy (10 males, mean age 7 y 2 mo (SD 2 y 1 mo) classified as level III (n = 8) or IV (n = 11) on the Gross Motor Function Classification System. The children had completed a 6-week task-specific sit-to-stand exercise program. Each week a physical therapist and caregivers supervised the program: twice by the physical therapist and three times by the caregivers. Interviews were completed immediately after program completion, and transcripts were analyzed using a process of inductive thematic analysis within an interpretive description framework. Themes were: (1) caregivers saw positive changes in their children from completing the program, (2) seeing positive changes gave caregivers hope that their child could develop with further training, and (3) the program was feasible to complete. Caregivers perceived positive changes in their children and expressed increased hope for their child's future after a high repetition sit-to-stand exercise program, suggesting the program is feasible with caregiver supervision. [ABSTRACT FROM AUTHOR]

To determine if eccentric exercise was effective, safe and feasible in increasing function and quality of life in people with heart failure compared to usual care and a waitlist control group. A prospective, three-armed, parallel-design, assessor-blind, pilot randomised controlled trial with 1:1:1 allocation. Forty-seven participants (16 female; mean age 66 years) with mild to moderate heart failure were randomly allocated to either eccentric exercise, concentric exercise or a waitlist control group. Participants in the exercise groups completed twice-weekly exercise for eight weeks. Primary outcome was walking capacity. Secondary outcomes were quality of life, leg strength and fatigue. Outcomes were assessed at baseline, post intervention and three-month follow-up. Attendance, tolerability and adverse events were used to determine safety and feasibility. Intention-to-treat analysis showed no differences between eccentric exercise and either concentric exercise or waitlist for any outcome. Per-protocol analysis found improvements identified by the Minnesota living with heart failure questionnaire were significantly greater post-intervention for eccentric exercise compared to concentric exercise (−17.99 units, 95% confidence interval −35.96 to −0.01). No major adverse events were reported. In this small trial, eccentric exercise did not demonstrate superior outcomes to concentric exercise or a waitlist control group. The protocol for this trial was registered at clinicaltrials.gov, registration number: NCT02223624, registration date: 22 August 2014. Regular physical activity and referral to rehabilitation is recommended for people with chronic heart failure, however exercise can be challenging for this group. Eccentric exercise was safe and tolerable for participants with heart failure. Documentation of exercise progression is important to demonstrate a dose–response relationship. In this study there were no differences between groups who received eccentric exercise, concentric exercise or no exercise. [ABSTRACT FROM AUTHOR]

Background: Individuals with Down syndrome (DS) are at significant risk for early onset Alzheimer's disease (AD), likely due to the triplication of genes on chromosome 21 that facilitate AD neuropathology. To aid the effective early diagnosis of dementia in DS, we demonstrate the strategy of using single point assessment of cognitive performance with scoring normed for degree of intellectual disability to generate age related prevalence data for acquired mild cognitive impairment (AMCI).Methods: Four hundred and twelve adults with DS were assessed using the Neuropsychological Assessment of dementia in adults with Intellectual Disability. Normative data, banded by degree of intellectual disability, allowed identification of AMCI by atypical deviation from expected performance.Results: AMCI was evident in approximately 20% of adults with DS aged 40 and under, 40% aged 41-50 and 45% aged 51 and over. Relative risk increased significantly in those aged 46 and over. Analysis of prevalence by 5-year age bands revealed two peaks for higher prevalence of AMCI.Conclusions: Psychometric data indicate single point assessment of AMCI is possible for the majority of adults with DS. Two peaks for age-related prevalence of AMCI suggest the risk for onset of AD conferred by trisomy of chromosome 21 is moderated by another factor, possibly ApoE status. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to describe the development and evaluation of integrated intensive support service (ISS) for adults with learning disabilities who have complex needs and are at risk of admission to an inpatient unit. Design/methodology/approach: Existing services were remodelled. The service explored external service models and established an integrated ISS comprising intensive community support and intensive support beds. Findings: Data indicates that the majority of people referred to the service avoid both admission to an inpatient unit and placement breakdown. Most people admitted to the inpatient unit are not known to community services. Length of stay has significantly reduced. Practical implications: Other services can use the information to remodel how to provide intensive support and avoid admission to an inpatient unit. Originality/value: It demonstrates how remodelling can drive improvements to reduce placement breakdown and risk of admission. [ABSTRACT FROM AUTHOR]

Aim: To investigate if a sit‐to‐stand exercise programme for children with cerebral palsy (CP) would improve self‐care and mobility. Method: Thirty‐eight children with CP (19 males, 19 females; mean age 8y 0mo, SD 2y 4mo, age range 4y 0mo–12y 4mo) classified in Gross Motor Function Classification System (GMFCS) levels III and IV and their caregivers were randomly allocated to sit‐to‐stand training plus routine physiotherapy (balance and gait training) or routine physiotherapy only (controls). Task‐specific sit‐to‐stand training was completed five times a week for 6 weeks under physiotherapist (twice weekly) and caregiver (three times weekly) supervision. Blinded outcome assessments at week 7 were the self‐care and mobility domains of the Functional Independence Measure for Children, Five Times Sit‐to‐Stand Test (FTSST), and Modified Caregiver Strain Index (MCSI). Results: The sit‐to‐stand group self‐care increased by 2.2 units (95% confidence interval [CI] 1.3–3.1) and mobility increased by 2.2 units (95% CI 1.4–3.0) compared to the control group. In the sit‐to‐stand group, the FTSST was reduced by 4.0 seconds (95% CI −4.7 to −3.2) and the MCSI was reduced by 0.8 units (95% CI −1.2 to −0.4) compared to the control group. Interpretation: A sit‐to‐stand exercise programme for children with CP classified in GMFCS levels III and IV improved sit‐to‐stand performance and resulted in small improvements in self‐care and mobility, while reducing caregiver strain. What this paper addsSit‐to‐stand training improved independence in self‐care and mobility for children with cerebral palsy (CP).Home‐based sit‐to‐stand training programmes for children with CP can reduce the burden on supervising caregivers. What this paper adds: Sit‐to‐stand training improved independence in self‐care and mobility for children with cerebral palsy (CP).Home‐based sit‐to‐stand training programmes for children with CP can reduce the burden on supervising caregivers. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to consider the issue of types of assessment offered by services for people with learning disabilities from the research study "A Comparison of Dementia Assessment Services for People with Intellectual Disabilities". Design/methodology/approach: The commentary is based on a review of the associated literature. Findings: Assessment for possible dementia is a complex activity. The gold standard is to ensure that the assessment process is comprehensive including both direct assessments with the person and gathering information from key informants. The issues in not adopting this methodology are considered, as are issues in what services and assessments are called. Originality/value: The commentary considers the studies presented from a practitioner perspective. [ABSTRACT FROM AUTHOR]

The purpose of this pilot exploratory study was to determine any immediate effects of a session of aquatic exercise (AE) compared with contrast therapy shallow water treadmill running (CSWR). Twenty-nine elite footballers were allocated randomly to AE or CSWR, 48 hr after a practice match. Outcome measures included maximum vertical jump height; visual analog scale (VAS) for pain; the squeeze test for adductor strength, sit and reach test, and ankle and hip range of movement. A significant difference between groups was found for maximum vertical jump height with the AE group being able to jump higher after the intervention (95% CI [-8.63 to -1.28]). No other significant differences between groups were detected for any outcome. Significant within group effects were found for the CSWR group in improving sit and reach (p = .04), and reducing pain when performing the squeeze test (p = .02). Both interventions may have improved aspects of performance; however, more highly powered trials, incorporating a control group, need to be conducted. [ABSTRACT FROM AUTHOR]

Purpose: Assessment of executive functioning is an important element of a comprehensive assessment of intellectual abilities. Few assessments available are accessible for individuals with intellectual disabilities (ID) and none have population-specific norms. This paper aims to describe the adaptation of the behavioural assessment of dysexecutive syndrome (BADS). Design/methodology/approach: Adaptations were made to the BADS tests to create the BADS – intellectual disabilities (BADS-ID). Data from three doctoral dissertations were combined to explore the utility, reliability, validity and component structure of the BADS-ID. Properties of the BADS-ID were compared with the Cambridge Executive Functioning Assessment (CEFA). Findings: The BADS-ID is accessible to IQ range 50–70 and has a two-component structure. It has good inter-rater reliability, but poor internal consistency. It has a good face and content validity but evidence for concurrent and discriminative validity is weak. All properties are comparable to or better than the CEFA. Research limitations/implications: Further research is needed to improve reliability and validity. The development of an accessible test battery with known reliability and validity for individuals with ID should facilitate research into executive functioning in this population. There is the potential to develop population-specific norms from the data. Practical implications: An accessible test battery for individuals with ID is helpful in clinical situations. Originality/value: To the best of the authors' knowledge, this is the first study to explore the adaptation of the BADS for use with individuals with ID. [ABSTRACT FROM AUTHOR]

Having a diagnosis of Down syndrome (DS) is associated with intellectual disability (ID), pervasive developmental disorders and Alzheimer's dementia (AD). The association between these conditions has not been well evaluated. This paper looks to examine the current evidence pertaining to the relationship between dementia in people with DS and severity of ID and the presence of pervasive developmental disorders. A scoping review using PRISMA guidance was undertaken. Medline, Cochrane database, NHS evidence, Trial registers and Open Grey were searched in December 2018 and an updated search was completed in July 2020. Three search strategies were used to retrieve articles relating to DS, dementia, pervasive developmental disorders (including autism, autism spectrum disorder (ASD) and attention-deficit hyperactivity disorder (ADHD)) and severity of ID. Studies were included if they met the pre-defined inclusion criteria of investigating an association between autism/ASD, ADHD, or severity of ID and the development of dementia in people with DS. Studies were excluded if they did not include primary data, if the population included non-Down causes of ID, or if no specific outcome measure related to comorbid autism/ASD, ADHD, or severity of ID and dementia in people with a diagnosis of DS were reported. There were no exclusions related to study design. Papers were assessed for quality using the Mixed Methods Appraisal Tool (MMAT). The search identified 15 papers, publishing results from 12 studies, relating to severity of ID, DS and dementia. No papers were identified relating to pervasive developmental disorders, DS and dementia. There is limited evidence on how severity of ID impacts on the presentation, diagnosis, management or prognosis of dementia in people with DS. However, no evidence was found on comorbid pervasive developmental disorders, DS and dementia. This paper has identified multiple areas for future research. There is an urgent need for longitudinal studies into the presentation, development and progression of dementia in people with DS ensuring the severity of ID and comorbid pervasive developmental conditions are captured regularly to understand their influence on the dementia etiology and outcome. [ABSTRACT FROM AUTHOR]

Purpose: To determine the effects of sit-to-stand exercise programs on patient-related outcomes in people with physical impairments due to health conditions. Methods: This review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines and was registered prospectively. Seven electronic databases were systematically searched for relevant articles. Inclusion and exclusion criteria were used to screen the titles and abstracts of articles identified using the key search terms of sit-to-stand and exercise. Only randomized controlled trials were included. The methodological quality of papers was assessed using the Cochrane risk of bias tool. Results: A total of eight trials were included. A meta-analysis was conducted using four of the trials that focused on patients with neurological conditions. There was moderate-quality evidence that sit-to-stand exercise programs improve sit-to-stand performance, but no evidence from another meta-analysis that sit-to-stand training improved balance for patients with neurological conditions. There was also no evidence from individual trials that positive changes occurred in the outcomes of gait speed and distance, lower limb muscle strength, falls, or participation. Conclusions: Sit-to-stand training could be a useful intervention when patients have limited sit-to-stand function and the aim of treatment is to improve this performance. Sit-to-stand training could be a useful intervention for patients when the aim is to improve sit-to-stand performance. Sit-to-stand training may not be a useful intervention when the aim is to improve other functions such as balance. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to evaluate staff knowledge of Mental Capacity Act (MCA) capacity assessments within the Learning Disabilities division of a Mental Health and Learning Disabilities Trust. The limited research available suggests staff knowledge tends to be poor, particularly concerning who is the decision maker. Design/methodology/approach: A 12-item multiple choice questionnaire, which reflects the five core principles of MCA (2005), was developed. Questionnaires were completed by 262 health and social staff members who support people with LD. Findings: Results show high variability of MCA capacity assessment knowledge within the LD division. However, qualified staff and those from health services scored significantly higher across all categories on the questionnaire compared to non-qualified and social care staff, respectively. On average, all staff scored poorly when asked to identify "who is the decision maker?" in a case scenario question. Research limitations/implications: The main limitation is that we did not collect data on how many previous capacity assessments and discussions each person had been involved with. The findings clearly suggest current methods of training lack efficacy in helping staff apply MCA knowledge to their clinical work. Originality/value: Compared to past literature, this study utilised a novel and more comprehensive questionnaire. This focused on case scenario questions to assess staff situational judgement. In addition, the findings add to a sparse evidence base that provides a foundation for future research. [ABSTRACT FROM AUTHOR]

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Our pilot study investigated if children with Down syndrome engaged in the recommended 60 min of moderate to vigorous physical activity (MVPA) every day. Twenty-three children with Down syndrome (7 girls, 16 boys; mean age 11.7 years, SD = 3.1) wore a triaxial accelerometer for 7 consecutive days to measure their activity levels. The average daily MVPA undertaken was 104.5 min (SD = 35.3 min). Only 8 of 19 children (42.1%) completed at least 60 min of MVPA each day. Lower amounts of activity were associated with older children (r = -.67, p < .01). Parents, teachers, and health professionals need to encourage children with Down syndrome to take part in more frequent MVPA. [ABSTRACT FROM AUTHOR]

Purpose: Evaluate intra-rater and inter-rater reliability of the one-repetition maximum strength test in people with chronic heart failure. Design: Intra-rater and inter-rater reliability study. Setting: A public tertiary hospital in northern metropolitan Melbourne. Participants: Twenty-four participants (nine female, mean age 71.8 ± 13.1 years) with mild to moderate heart failure of any aetiology. Methods: Lower limb strength was assessed by determining the maximum weight that could be lifted using a leg press. Intra-rater reliability was tested by one assessor on two separate occasions. Inter-rater reliability was tested by two assessors in random order. Statistical analyses: Intra-class correlation coefficients and 95% confidence intervals were calculated. Bland and Altman analyses were also conducted, including calculation of mean differences between measures () and limits of agreement. Results: Ten intra-rater and 21 inter-rater assessments were completed. Excellent intra-rater (intra-class correlation coefficient2,1 0.96) and inter-rater (intra-class correlation coefficient2,1 0.93) reliability was found. Intra-rater assessment showed less variability (mean difference 4.5 kg, limits of agreement −8.11 to 17.11 kg) than inter-rater agreement (mean difference −3.81 kg, limits of agreement −23.39 to 15.77 kg). Conclusion: One-repetition maximum determined using a leg press is a reliable measure in people with heart failure. Given its smaller limits of agreement, intra-rater testing is recommended. Using a leg press to determine a one-repetition maximum we were able to demonstrate excellent inter-rater and intra-rater reliability using an intra-class correlation coefficient. The Bland and Altman levels of agreement were wide for inter-rater reliability and so we recommend using one assessor if measuring change in strength within an individual over time. [ABSTRACT FROM AUTHOR]

Objectives: Post diagnostic support (PDS) has varied definitions within mainstream dementia services and different health and social care organizations, encompassing a range of supports that are offered to adults once diagnosed with dementia until death. Method: An international summit on intellectual disability and dementia held in Glasgow, Scotland in 2016 identified how PDS applies to adults with an intellectual disability and dementia. The Summit proposed a model that encompassed seven focal areas: post-diagnostic counseling; psychological and medical surveillance; periodic reviews and adjustments to the dementia care plan; early identification of behaviour and psychological symptoms; reviews of care practices and supports for advanced dementia and end of life; supports to carers/ support staff; and evaluation of quality of life. It also explored current practices in providing PDS in intellectual disability services. Results: The Summit concluded that although there is limited research evidence for pharmacological or non-pharmacological interventions for people with intellectual disability and dementia, viable resources and guidelines describe practical approaches drawn from clinical practice. Post diagnostic support is essential, and the model components in place for the general population, and proposed here for use within the intellectual disability field, need to be individualized and adapted to the person's needs as dementia progresses. Conclusions: Recommendations for future research include examining the prevalence and nature of behavioral and psychological symptoms (BPSD) in adults with an intellectual disability who develop dementia, the effectiveness of different non-pharmacological interventions, the interaction between pharmacological and non-pharmacological interventions, and the utility of different models of support. [ABSTRACT FROM AUTHOR]

Purpose: To examine the validity and reliability of an activity monitor to estimate upper limb activity.Methods: Thirty-two adults after distal radial fracture were recruited. 15 adults performed five upper limb activities during two testing sessions, one week apart to investigate criterion validity against the criterion reference of three-dimensional motion analysis, convergent validity, and test-retest reliability. 17 adults in two therapy groups wore monitors for three consecutive days at baseline and six weeks post-intervention. Hypothesis testing (noninferiority) assessed comparison of group differences.Results: There were large, significant positive correlations between monitor counts and motion analysis for affected/unaffected wrists during the grocery shelving [r = 0.82, r = 0.73, respectively] and floor sweeping activities [r = 0.54, r = 0.59, respectively]. Large confidence intervals relative to means suggests the monitor could not accurately predict motion analysis distance or acceleration. Relative reliability was excellent in affected/unaffected wrists for crank ergometer [ICC(2,1) = 0.91, ICC(2,1) = 0.88, respectively], grocery shelving [ICC(2,1) = 0.83, ICC(2,1) = 0.89, respectively], and table dusting activities [ICC(2,1) = 0.77, ICC(2,1) = 0.83, respectively]. Correlations and reliability for typing were poor; hypothesis testing of group equivalence was not confirmed.Conclusions: There is preliminary evidence that an activity monitor is a valid and reliable tool to measure gross arm activity after distal radial fracture. Implications for Rehabilitation Distal radius fractures are one of the most common upper limb fractures that cause activity limitations and participation restrictions.After a distal radius fracture patients are often referred to therapy (physiotherapy, occupational therapy, hand therapy) for rehabilitation to return to pre-injury function and activity levels.Activity monitors may be a valid and reliable measurement tool that therapists can use with their patients to quantify gross arm activity to enable monitoring of injury recovery and rehabilitation adherence.Activity monitors may not be sufficiently reliable and valid to monitor fine movements of the wrist and hand after distal radius fracture. [ABSTRACT FROM AUTHOR]

Background: There is little evidence to guide pharmacological treatment in adults with Down syndrome and Alzheimer's disease. Aims To investigate the effect of cholinesterase inhibitors or memantine on survival and function in adults with Down syndrome and Alzheimer's disease.Method: This was a naturalistic longitudinal follow-up of a clinical cohort of 310 people with Down syndrome diagnosed with Alzheimer's disease collected from specialist community services in England.Results: Median survival time (5.59 years, 95% CI 4.67-6.67) for those on medication (n = 145, mainly cholinesterase inhibitors) was significantly greater than for those not prescribed medication (n = 165) (3.45 years, 95% CI 2.91-4.13, log-rank test P<0.001). Sequential assessments demonstrated an early effect in maintaining cognitive function.Conclusions: Cholinesterase inhibitors appear to offer benefit for people with Down syndrome and Alzheimer's disease that is comparable with sporadic Alzheimer's disease; a trial to test the effect of earlier treatment (prodromal Alzheimer's disease) in Down syndrome may be indicated. Declaration of interest A.S. has undertaken consulting for Ono Pharmaceuticals, outside the submitted work. Z.W. has received a consultancy fee and grant from GE Healthcare, outside the submitted work. [ABSTRACT FROM AUTHOR]

Purpose The purpose of this paper is to explore the importance of equal access to Improving Access to Psychological Therapies (IAPT) for people with intellectual disabilities.Design/methodology/approach The paper identifies barriers to access and shows how a reference group can work to solve the barriers and increase access.Findings The paper evaluates the authors’ progress to date and how the authors plan to continue to take the work forward.Practical implications The paper highlights some of the factors responsible for the authors’ success and gives information that will be helpful to other areas who are interested in facilitating equal access.Originality/value The paper demonstrates how the focus of a reference group can drive improvements across services to improve access for people with intellectual disabilities to IAPT services. [ABSTRACT FROM AUTHOR]

Purpose: To explore the perceived effects of an aerobic exercise program delivered in specialist schools for young people with cerebral palsy with high support needs. Methods: In-depth interviews were completed with 8 students with cerebral palsy, 10 parents, 8 teachers and 7 physiotherapists. Interviews were audio-recorded, transcribed verbatim and independently coded by two researchers. Data were analyzed using thematic analysis. Results: Two themes emerged: one about program impact and the second about influential design features. Exercise was perceived as important, and participants indicated that the program had resulted in positive physical (e.g., improved ease of mobility, fitness and stamina) and psychosocial (e.g., happiness, social experience, challenge) impacts. The school setting, program staff and student attitudes were key features of the program. Conclusions: These data converge with those from a randomized controlled trial and attribute physical and psychosocial benefits to a specialist school-based exercise program for young people with cerebral palsy. [ABSTRACT FROM AUTHOR]

Purpose: To evaluate the safety, adherence, and estimates of effect of an aerobic exercise program in specialist schools for young people with cerebral palsy. Methods: Nineteen students with cerebral palsy were randomly allocated to an intervention group who completed an aerobic exercise program (27 sessions over nine weeks) or a control group who completed social/art activities over the same time. Results: There were no serious adverse events and the exercise program was completed with high rates of attendance (77%) and adherence to target heart rate zones (79%). Effect sizes favored the intervention group for measures of cardiovascular performance (sub-maximal treadmill test, effect size d = 0.7; muscle power sprint test, d = 0.9) and participation (Preference for Active-Physical Activities, d = 0.6). Conclusions: An aerobic exercise program in specialist schools for young people with cerebral palsy, that may improve measures of cardiovascular performance, can be completed safely, with moderately high levels of adherence. [ABSTRACT FROM AUTHOR]

Purpose The purpose of this paper is to consider the implications for people with Down’s syndrome and their families of identifying those people who are at risk of developing dementia from the research study “Estimating the number of people with Down’s syndrome in Scotland and the cohort at elevated risk of early onset dementia”.Design/methodology/approach The commentary is based on a review of the associated literature.Findings Estimating the numbers is important but has serious implications for people who have an elevated risk and their families. Preparation and ongoing support and planning are vital to ensure that quality of life is maintained as dementia is identified and progresses.Originality/value The commentary considers the research presented from a practitioner perspective. [ABSTRACT FROM AUTHOR]

Purpose: Primary purpose to determine if cultural and linguistic diversity affects health-related outcomes in people with stroke at discharge from hospital and secondary purpose to explore whether interpreter use alters these outcomes. Method: Systematic search of: Cochrane, PEDro, CINAHL, Medline, Pubmed, Embase, PsycINFO and Ageline databases. Publications were classified into whether they examined the impact of diversity in culture, or language or culture and language combined. Quality of evidence available was summarized using Best Evidence Synthesis. Results: Eleven studies met inclusion criteria and were reviewed. Best Evidence Synthesis indicated conflicting evidence about the impact of culture alone and language barriers alone on health-related outcomes. There was strong evidence that hospital length of stay does not differ between groups when the combined impact of culture and language was investigated. Conflicting evidence was found for other outcomes including admission, discharge and change in FIM scores, and post-hospital discharge living arrangements. It is unknown if interpreter use alters health-related outcomes, because this was infrequently reported. Conclusion: The current limited research suggests that cultural and linguistic diversity does not appear to impact on health-related outcomes at discharge from hospital for people who have had a stroke, however further research is needed to address identified gaps. The different language, culture and beliefs about health demonstrated by patients with stroke from minority groups in North America do not appear to significantly impact on their health-related outcomes during their admission to hospital. It is not known whether interpreter use influences outcomes in stroke rehabilitation because there is insufficient high quality research in this area. Clinicians in countries with different health systems and different cultural and linguistic groups within their communities need to view the results with caution as further investigation is required outside North America to ensure optimal and equitable care for these groups. In the absence of clear outcomes from high quality research, clinicians should ensure patients and their families have an optimal understanding of the health condition, the rehabilitation process and the service system, irrespective of language or cultural differences. [ABSTRACT FROM AUTHOR]

Purpose: Primary purpose to determine if cultural and linguistic diversity affects health-related outcomes in people with stroke at discharge from hospital and secondary purpose to explore whether interpreter use alters these outcomes. Method: Systematic search of: Cochrane, PEDro, CINAHL, Medline, Pubmed, Embase, PsycINFO and Ageline databases. Publications were classified into whether they examined the impact of diversity in culture, or language or culture and language combined. Quality of evidence available was summarized using Best Evidence Synthesis. Results: Eleven studies met inclusion criteria and were reviewed. Best Evidence Synthesis indicated conflicting evidence about the impact of culture alone and language barriers alone on health-related outcomes. There was strong evidence that hospital length of stay does not differ between groups when the combined impact of culture and language was investigated. Conflicting evidence was found for other outcomes including admission, discharge and change in FIM scores, and post-hospital discharge living arrangements. It is unknown if interpreter use alters health-related outcomes, because this was infrequently reported. Conclusion: The current limited research suggests that cultural and linguistic diversity does not appear to impact on health-related outcomes at discharge from hospital for people who have had a stroke, however further research is needed to address identified gaps. [ABSTRACT FROM AUTHOR]

Purpose This paper is one of seven in this volume elaborating different approaches to quality improvement in education. This paper aims to delineate a methodology called Deliverology.Design/methodology/approach The paper presents the origins, theoretical foundations, core principles and a case study showing an application of Deliverology in the Kentucky Department of Education in the USA.Findings The core principles underlying the approach are embodied in its guiding questions: What is our system trying to do? How are we planning to do it? At any given moment, how will we know whether we are on track to succeed? and If we are not on track, what are we going to do about it?Originality/value Few theoretical treatments and demonstration cases are currently available on commonly used models of quality improvement in other fields that might have potential value in improving education systems internationally. This paper fills this gap by elucidating one promising approach. The paper also derives value, as it permits a comparison of the Deliverology approach with other quality improvement approaches treated in this volume. [ABSTRACT FROM AUTHOR]

Purpose: To determine whether English proficiency and/or the frequency of interpreter use impacts on health outcomes for inpatient stroke rehabilitation.Method: Study design: Retrospective case–control study.Participants: People admitted for inpatient stroke rehabilitation. A high English proficiency group comprised people with native or near native English proficiency (n = 80), and a low English proficiency group comprised people who preferred a language other than English (n = 80). Outcome measures: Length of stay (LOS), discharge destination and Functional Independence Measure (FIM).Results: The low English proficiency group showed a greater improvement in FIM from admission to discharge (p = 0.04). No significant differences were found between groups in LOS, discharge destination and number of encounters with allied health professionals. Increased interpreter usage improved FIM efficiency but did not significantly alter other outcomes.Conclusion: English proficiency does not appear to impact on health outcomes in inpatient rehabilitation with a primarily in-house professional interpreter service. However, there is a need for a larger powered study to confirm these findings.Implications for rehabilitationPeople with low English proficiency undergoing inpatient stroke rehabilitation in a setting with a primarily in-house professional interpreter service, achieved similar outcomes to those with high English proficiency irrespective of frequency of interpreter usage.A non-significant increase of 4 days length of stay was observed in the low English proficiency group compared to the high English proficiency group.For patients with low English proficiency, greater change in Functional Independence Measure efficiency scores was observed for those with higher levels of interpreter use relative to those with low interpreter use. Clinicians should optimise use of interpreters with patients with low English proficiency when possible. [ABSTRACT FROM PUBLISHER]

Purpose: To examine if individualised resistance training increases the daily physical activity of adolescents and young adults with bilateral spastic cerebral palsy (CP).Method: Young people with bilateral spastic CP were randomly assigned to intervention or to usual care. The intervention group completed an individualised lower limb progressive resistance training programme twice a week for 12 weeks in community gymnasiums. The primary outcome was daily physical activity (number of steps, and time sitting and lying). Secondary outcomes included muscle strength measured with a one-repetition maximum (1RM) leg press and reverse leg press. Outcomes were measured at baseline, 12 weeks and 24 weeks.Results: From the 36 participants with complete data at 12 weeks, there were no between-group differences for any measure of daily physical activity. There was a likely increase in leg press strength in favour of the intervention group (mean difference 11.8 kg; 95% CI −1.4 to 25.0). No significant adverse events occurred during training.Conclusions: A short-term resistance training programme that may increase leg muscle strength was not effective in increasing daily physical activity. Other strategies are needed to address the low-daily physical activity levels of young people with bilateral spastic CP.Implications for RehabilitationProgressive resistance training may increase muscle strength but does not lead to increases in daily physical activity of young people with bilateral spastic cerebral palsy (CP) and mild to moderate walking disabilities.Other strategies apart from or in addition to resistance training are needed to address the low daily physical activity levels of young people with bilateral spastic CP and mild to moderate walking disabilities. [ABSTRACT FROM PUBLISHER]

Objective: To determine if eccentric exercise is effective, tolerable and safe for adults with chronic cardiorespiratory disease. Data sources: We searched electronic databases from inception until January 2015 (Medline, CINAHL, Embase, SportDiscus, PEDro, Cochrane Central and AMED) supplemented by citation tracking and reference list scanning. Review methods: Included articles had to report effects of eccentric exercise, alone or as a primary component of intervention, of any intensity and duration, on adults with chronic cardiorespiratory disease. Trials needed to be reported as full text in a peer-reviewed journal and include control data (randomised, quasi-randomised and single group cross-over design trials). Any outcomes or comparison interventions were accepted. Methodological rigor was assessed using the PEDro scale. Results: Of 22 potentially relevant articles, 10 met inclusion criteria. They reported results from seven trials with a total of 112 participants across the diseases. PEDro scores were low (median 3). Eccentric exercise increased strength and mobility to comparable levels as concentric exercise, however, it did so with lower oxygen consumption (effect size as large as d = –3.07 (–4.12, –1.80)), and four-fold power output (effect size d = –3.60 (–5.03, –1.66)). There were no adverse events reported for eccentric exercise. Pain was avoided with familiarisation sessions and individual exercise prescription. Conclusion: Eccentric exercise is beneficial and at least comparable with traditional exercise in improving walking and strength for people with chronic cardiorespiratory disease. It was well tolerated and we identified no safety concerns for the use of this intervention for this population. [ABSTRACT FROM AUTHOR]

Purpose – Outcome measurement is a key priority for services. There are no papers on specific overall quality outcome measures for people with intellectual disabilities who have dementia. The purpose of this paper is to describe the development and piloting of a new measure. Design/methodology/approach – A process was developed to measure quality outcomes across all stages of dementia. The reliability of the tool was measured using Cronbach’s α coefficients, along with data about its clinical utility. Findings – The QOMID has good reliability, face validity and internal reliability suggesting that all domains contribute equally towards the construct of quality outcome. An exploratory factor analysis revealed that there may be four or five sub-factors within the QOMID, The clinical utility of the assessment tool was explored and it can be concluded that the QOMID is simple, fairly quick and effective. Research limitations/implications – The scale has good psychometric properties and the initial parameters for the QOMID were met. Further exploration of factors needs to be considered with a larger sample of participants. Practical implications – The scale was liked by assessors and gives a practical tool that can both measure the quality outcome for people at each stage of their dementia, and help to develop more effective care plans. Originality/value – This is the first measure to look at quality outcomes for people with intellectual disabilities and dementia and which takes a staged approach. [ABSTRACT FROM AUTHOR]

Aim The aim of the study was to describe daily physical activity levels of adolescents and young adults with bilateral spastic cerebral palsy ( CP) and to identify factors that help predict these levels. Method Daily physical activity was measured using an accelerometer-based activity monitor in 45 young people with bilateral spastic CP (23 males, 22 females; mean age 18y 6mo [ SD 2y 5mo] range 16y 1mo-20y 11mo); classified as Gross Motor Function Classification System ( GMFCS) level II or III and with contractures of <20° at hip and knee. Predictor variables included demographic characteristics (age, sex, weight) and physical characteristics (gross motor function, lower limb muscle strength, 6min walk distance). Data were analyzed using the information-theoretic approach, using the Akaike information criterion ( AIC) and linear regression. Results Daily activity levels were low compared with published norms. Gross Motor Function Measure Dimension-E ( GMFM-E; walking, running, and jumping) was the only common predictor variable in models that best predicted energy expenditure, number of steps, and time spent sitting/lying. GMFM Dimension-D (standing) and bilateral reverse leg press strength contributed to the models that predicted daily physical activity. Interpretation Adolescents and young adults with bilateral spastic CP and mild to moderate walking disabilities have low levels of daily activity. The GMFM-E was an important predictor of daily physical activity. [ABSTRACT FROM AUTHOR]

Accessible summary We looked at how staff think about the changes from working in a long-stay hospital setting to working in a home for people with learning disabilities. In homes, staff said that they were more relaxed and could spend more time and offer more choices to residents than they could when they worked in hospital settings., With the changes, staff often had to make their own decisions about the care they provide and were worried about getting it right., Staff felt that their managers were looking more closely at what they were doing., Staff said that team meetings, supervision and training helped them to cope with the changes., Summary This study describes research that was designed to explore the reflections and perspectives of staff who had experienced the change from institutional care to person-centred care and learn what factors had supported the change to, and continued adoption of, person-centred care. In-depth, semistructured interviews were conducted with seven participants working in residential homes for people with learning disabilities. The interviews were analysed using interpretative phenomenological analysis. Participants described positive changes, for example they were able to offer choice and spend time with residents. They perceived the work as less pressured and more relaxed. For some, this had the impact of encouraging them to work harder and freeing up their time to facilitate forming relationships with residents in the homes. Participants discussed an increased autonomy, responsibility and accountability in their work and a sense of being constantly monitored. There appeared to be reluctance amongst participants to own difficulties and anxieties associated with changes. Participants identified a number of strategies and issues that they felt had supported these changes. The research suggests some areas of consideration for implications regarding future practice in staff support and training within services for people with learning disabilities. [ABSTRACT FROM AUTHOR]

Accessible summary People with learning disabilities might have their children taken from their care. If they do, what then happens to the parents?, I talked to nine mums who had their children taken away from their care. They told me about what this was like and how they felt., This research gives advice to people (particularly professional people) about how to work better with mums who have had their children removed. It also shows that sometimes it is difficult for people with learning disabilities to know their rights and say what they think., Abstract There is a recognised risk of parents with learning disabilities having their children removed. Little research has investigated the impact of this on these parents. This article looks at the perceptions of nine mothers with mild learning disabilities and their experiences having had their children removed. Interview data were analysed using Interpretative Phenomenological Analysis ( IPA). Findings reveal the struggles mothers with learning disabilities faced being 'suitable mother' - including presumed incompetence and scrutiny of parenting. Participants' responses to having had their children removed are looked at and support reviewed. Finally issues of power were highlighted throughout Participants' accounts and the impact of this is discussed. Clinical implications indicate areas for service improvement. [ABSTRACT FROM AUTHOR]

Aim To describe the development of the Mini- Assisting Hand Assessment ( Mini- AHA) for children with signs of unilateral cerebral palsy ( CP) aged 8 to 18 months, and evaluate aspects of content and internal scale validity. Method The ability of the video-recorded Mini- AHA play session to provoke bimanual performance in children with unilateral CP and typical development was evaluated. Original AHA test items were examined for their suitability for younger children and possible new items were generated. Data from 108 assessments of children with unilateral CP (86 children, 53 males, 33 females; mean age 13mo, SD 3mo, range 8-18mo) were entered into a Rasch measurement model analysis to evaluate internal scale validity. A Spearman's correlation analysis explored the relationship between age and ability measures for children with unilateral CP. The frequency of maximum scores in 40 children with typical development (22 males, 18 females; mean age 12mo, SD 3mo) was examined. Results The Mini- AHA play session provoked bimanual responses in typically developing children 99% of the time. Person and item fit criteria established 20 items for the scale. The resultant unidimensional scale also demonstrated excellent discriminative features through high separation reliability. The item calibration values covered the range of person ability measures well. Age was not related to the ability measures for children with unilateral CP ( rs=0.178). All children with typical development achieved maximum scores. Interpretation Accumulated evidence shows that the Mini- AHA validly measures use of the affected hand during bimanual performance for children with unilateral CP aged 8 to 18 months. The Mini- AHA has the potential to be a useful assessment to evaluate functional hand use and the effects of intervention in an age group when potential for change is high. [ABSTRACT FROM AUTHOR]

Purpose – There is little research addressing the delivery of training for health professionals who are interested in using cognitive-behaviour therapy (CBT) techniques as an adjunct to their current role. This paper describes the establishment and evaluation of a CBT training course to develop CBT skills in staff working with people with intellectual disabilities in Trust healthcare settings. The course would enable staff to learn how they could incorporate these skills into their daily practice to help them understand and work more effectively with people with intellectual disabilities. Design/methodology/approach – A CBT training course was designed to teach staff the use of a number of basic and specific CBT techniques and principles that staff could use within their current roles. Specific issues in relation to people with intellectual disabilities were included, e.g. understanding cognitive deficits as well as cognitive distortions. The course ran for six sessions on a fortnightly basis, followed by a two-month follow-up session. Participants completed a pre- and post-assessment questionnaire and kept a reflective diary. Findings – The training clearly focused on teaching skills that were feasible for staff to use in their own work settings. The evaluations, especially from the reflective diaries and the post-course questionnaires clearly demonstrated that this aim was achieved. Originality/value – This was a pilot study as there has been no previously published evidence of using this approach within intellectual disabilities services. A further training course has been planned to continue evaluating the effectiveness of this approach. [ABSTRACT FROM AUTHOR]

Aim The aim of this study was to investigate whether individualized resistance training improves the physical mobility of young people with cerebral palsy ( CP). Method Forty-eight participants with spastic diplegic CP (26 males, 22 females; mean age 18y 1mo, SD 1y 11mo) classified as level II or III on the Gross Motor Function Classification System were allocated randomly to progressive resistance training or usual-care control. Resistance training was completed twice weekly for 12 weeks at a community gymnasium under the supervision of a physiotherapist. Exercises were based on instrumented gait analysis and targeted muscles contributing to walking difficulties. Outcomes at 12 weeks and 24 weeks included objective measures of mobility (6-min walk test, instrumented gait analysis, and Gross Motor Function Measure dimensions D and E), participant-rated measures of mobility (Functional Mobility Scale and Functional Assessment Questionnaire), and muscle performance. Results The strength of targeted muscles increased by 27% (95% CI 8-46%) compared with control group. There were no between-group differences in any objective measure of mobility at 12 weeks (6-min walk test: mean difference 0.1m; 95% CI −21 to 21m) or at 24 weeks. Participant-rated mobility improved (Functional Mobility Scale at 5m: mean 0.6 units; 95% CI 0.1-1.1 units; Functional Assessment Questionnaire: 0.8 units; 95% CI 0.1-1.6 units) compared with control group at 12 weeks. Interpretation Individualized progressive resistance training increased strength in adolescents and young adults with spastic diplegic CP. Despite participant-rated benefits, the increased strength did not result in objective improvements in mobility. [ABSTRACT FROM AUTHOR]

The article reports a study which evaluated the feasibility and safety of a home-based exercise programme for people with Alzheimer's disease. The results revealed that an individualized home-based balance, strengthening and walking exercise programme delivered by a physiotherapist appears to be safe and feasible for people with mild to moderate Alzheimer's disease. The programme may improve balance and mobility performance and reduce risk of fall in people with Alzheimer's disease.

Purpose: To systematically review and compare the daily habitual physical activity levels and sedentary times of young people with cerebral palsy to their typically developing peers and to physical activity guidelines. Method: After searching electronic databases, two reviewers independently applied criteria. Studies were required to include young people with cerebral palsy (up to 18 years) and to quantitatively measure habitual physical activity, defined as activity across at least one day. Data extraction was independently verified, and quality analysis completed by two reviewers. Results: Of 895 identified studies, six moderate to high quality studies were included. There were four measures of habitual physical activity. Participants were aged 5 to 18 years and typically had moderate to high gross motor function. Across all ages and levels of motor function, young people with cerebral palsy participated in 13% to 53% less habitual physical activity than their peers. Levels of activity were approximately 30% lower than guidelines. Sedentary times were twice the maximum recommended amount. Conclusions: Young people with cerebral palsy participate in significantly lower levels of habitual physical activity than their peers, and less than recommended guidelines. Long-term negative health consequences of inactivity such as metabolic dysfunction, cardiovascular disease and poor bone density are therefore more likely. [ABSTRACT FROM AUTHOR]

Accessible summary Sometimes older people get confused and forget things and need lots of help: this is called dementia. People with Down's syndrome are more likely to develop dementia than other people with learning disabilities. When people have dementia, they need extra help from their families or from their care staff. Psychologists talked to families and care staff about what they knew about dementia, and what they found difficult about caring for somebody with Down's syndrome and dementia. They were asked about what help they got from services and what help they would like in the future. It was found that: Most people found it hard looking after someone with Down's syndrome and dementia., Review meetings were very important to them. They asked to be there for assessments and meetings., Most people wanted to know more about Down's syndrome and dementia. They asked for a booklet about it and for someone to explain it to them., Some people worried a lot about the future., Summary It is well established that people with Down's syndrome are more likely to develop dementia than other people and that onset of dementia is likely to occur earlier at an earlier age. The article reports on a specialist service for people with Down's syndrome and dementia. The service has offered dementia screening and assessment to people with Down's syndrome for over 10 years and has also developed to offer support and training for carers. Semi-structured interviews were conducted with family carers, relatives and staff about the impact on them of caring for someone with Down's syndrome and how the dementia service supports them in this role. The resulting data were analysed using interpretative phenomenological analysis. The responses provide rich insights into the areas of 'knowledge and information', 'coping and support' and 'concerns about the future'. Interviewees also identified services they wanted for the future. As a result of this evaluation, a number of changes have been proposed and begun to be implemented within the service. The results have important implications for other health, social care and voluntary organisations. [ABSTRACT FROM AUTHOR]

Background The aim of the study was to explore the validity of the social-moral awareness test ( SMAT) a measure designed for assessing socio-moral rule knowledge and reasoning in people with learning disabilities. Comparisons between Theory of Mind and socio-moral reasoning allowed the exploration of construct validity of the tool. Factor structure, reliability and discriminant validity were also assessed. Materials and Methods Seventy-one participants with mild-moderate learning disabilities completed the two scales of the SMAT and two False Belief Tasks for Theory of Mind. Results Reliability of the SMAT was very good, and the scales were shown to be uni-dimensional in factor structure. There was a significant positive relationship between Theory of Mind and both SMAT scales. Conclusions There is early evidence of the construct validity and reliability of the SMAT. Further assessment of the validity of the SMAT will be required. [ABSTRACT FROM AUTHOR]

Background: Balance exercise is an important component of falls-prevention interventions, with growing evidence that it can be beneficial for people with Alzheimer's disease (AD). However, to implement a balance exercise program successfully for people with AD it is important to consider factors that can affect commencement and adherence to the program. This qualitative study explored these factors.Methods: Ten participants with AD, who had completed a six-month home-based balance exercise program, and their caregivers (n = 9) participated. A phenomenological theoretical framework with semi-structured interviews was used for data collection and analysis.Results: Factors influencing the decision to commence the program were: possible benefits of the program, recommendations from health professionals, value of research, positive attitude towards exercise, and minimizing caregivers’ burden. Factors influencing adherence to the program were grouped under 11 themes: six themes facilitated completion (program characteristics, physiotherapist, exercise recording sheet, caregivers’ support, sense of commitment, and perceived benefit) and five themes were barriers (pre-existing conditions, dislike of structured exercise, absence from home, caregiver's health or commitment, and bad weather).Conclusions: A home-based exercise program with regular support from a physiotherapist and caregiver are key elements facilitating continuing program adherence in people with AD. [ABSTRACT FROM AUTHOR]

Accessible summary [ABSTRACT FROM AUTHOR]