Assessing the Subjective Happiness of Parents of Children With Severe Motor and Intellectual Disabilities Receiving Home Care.

BACKGROUND: Home care for children with severe motor and intellectual disabilities (SMID) is challenging for parents because it is highly intensive and long-lasting. The pursuit of happiness is an essential goal for everyone. However, only a few studies have focused on the happiness of families with such children. OBJECTIVE: The study aimed to examine the subjective happiness of parents of children with SMID receiving home care and identify the factors associated with their happiness. METHODS: We conducted a cross-sectional online questionnaire-based survey of 23 parents of children with SMID and nurses with children without disabilities as controls at Tottori University Hospital, Yonago, Japan from July 1 to August 31, 2023. We set the subjective happiness scale (SHS) scores as the outcomes. We used the Mann-Whitney U test to compare the SHS scores between the two groups. Moreover, we extracted the clinical and demographic factors affecting the SHS scores of parents of children with SMID using univariate linear regression analysis. RESULTS: We obtained responses from 12 parents with SMID and 105 controls. The average SHS scores of parents with SMID and controls were 4.8 and 4.7, respectively, and both groups did not differ significantly. Univariate analysis showed that parental male sex and the presence of a tracheostomy were negatively associated with the SHS scores of parents. CONCLUSIONS: The SHS scores did not differ significantly between parents with SMID and controls. However, more attention seemed necessary for fathers and parents of children who have undergone tracheostomies. Given the exploratory nature of this study and its small sample size, larger-scale investigations are warranted. Additionally, qualitative research conducted after establishing trustful relationships could provide further insights.

Abnormal eye movements increase as motor disabilities and cognitive impairments become more evident in Multiple Sclerosis: A novel eye-tracking study.

Background: Eye movements can reflect brain alterations and inform on the presence of motor disabilities and cognitive impairments in people with multiple sclerosis (pwMS). Objective: The aim of the study was to determine the correlation between motor and cognitive measurements and eye movement parameters when performing the n-back task (NBKT). Methods: This was a cross-sectional study carried out at Ramos Mejía Hospital, a center specialized in demyelinating diseases in Buenos Aires, Argentina. The study population consisted of 66 patients with relapsing-remitting multiple sclerosis (RRMS) and 5 patients with secondary progressive multiple sclerosis (SPMS). pwMS performed the n-back test while using a device head mounted display (HMD) with eyetracking capabilities in order to capture eye movement. Clinical motor and cognitive measures were assessed with Expanded Disability Status Scale (EDSS), Nine Hole Peg Test (NHPT), Timed 25-Foot Walk (T25FW), and Symbol Digit Modalities Test (SDMT). Results: pwMS showed strong and statistically significant correlations between gaze duration; number of fixations, saccade amplitude and motor disabilities and cognitive impairments as measured by EDSS, NHPT, T25FW, and SDMT. Conclusion: This study found significant correlations between eye movement behavior and motor and cognitive disability in pwMS. These findings suggest that eye movements have the potential to be used as a surrogate biomarker in MS progression.

"When everyone is responsible, no one takes responsibility": exploring pediatric physiotherapy services in Israel.

BACKGROUND: According to Israel's National Health Insurance Law (1994), the Ministry of Health is responsible for the provision of health services in the country including physiotherapy services; moreover, the Special Education Law (1988), stipulates that physiotherapy services for children with motor disabilities, as well as other allied health services, are provided by the Ministry of Education in educational settings. Thus, children with motor disabilities are entitled PT services under two different laws by two different ministries. METHOD: To describe the physiotherapy services for children with motor disabilities and examine how policymakers view these services, we conducted a qualitative study including in-depth semi-structured interviews with 10 policymakers from the Ministry of Health and the Ministry of Education, and the national directors of physiotherapy services from three of the four health maintenance organizations in Israel. RESULTS: Study results indicate that there is an array of physiotherapy services and providers. Despite the regulation of these services for children with motor disabilities, uncertainty and lack of knowledge were found about various issues. Therefore, the thematic analysis was structured around four descriptive questions: Where do the children receive physiotherapy? Who is eligible for physiotherapy treatment and who receives treatment? What interventions do children with motor disabilities receive? Who provides therapy for children with motor disabilities? CONCLUSIONS: Policymakers are dubious regarding the provision of these services, questioning whether children with motor disabilities receive physiotherapy services according to their needs. In addition, the abundance of suppliers does not necessarily improve the quality of services provided to children with motor disabilities, which may ultimately harm their developmental potential.

Cholelithiasis prevalence and risk factors in individuals with severe or profound intellectual and motor disabilities.

BACKGROUND: The prevalence and risk factors of cholelithiasis in individuals with severe or profound intellectual and motor disabilities (SPIMD) are poorly characterised. Thus, we aimed to investigate the prevalence and risk determinants of cholelithiasis in a cohort with SPIMD under medical care in a residential facility. METHODS: We categorised 84 patients in a residential hospital for persons with SPIMD into groups: those with (Group CL) and without (Group N) cholelithiasis. Gallstones were detected via computed tomography, ultrasonography or both. We evaluated gastrostomy status, nutritional and respiratory support, constipation, and bladder and kidney stones. Data were significantly analysed using univariate and multivariate logistic regression analyses. RESULTS: The prevalence rate of cholelithiasis in our SPIMD cohort was 27%. There were no significant differences in sex, age, weight, height, or Gross Motor Function Classification System between the two groups. However, more patients received enteral nutrition (39.13% vs. 6.56%; P = 0.000751) and were on ventilator support (56.52% vs. 19.67%; P = 0.00249) in Group CL than in Group N. Enteral nutrition [odds ratio (OR) 10.4, 95% confidence interval (CI) 1.98-54.7] and ventilator support (OR 20.0, 95% CI 1.99-201.0) were identified as independent risk factors for the prevalence of cholelithiasis in patients with SPIMD. CONCLUSIONS: Patients with SPIMD demonstrated an increased prevalence of cholelithiasis, with a notable association between nutritional tonic use and respiratory support. Therefore, to emphasise the need for proactive screening, it is crucial to devise diagnostic and therapeutic strategies specific to patients with SPIMD. Further investigation is essential to validate our findings and explore causative factors.

Prediction of refractory gastroesophageal reflux disease in young children.

BACKGROUND: Many children respond to medical treatment for gastroesophageal reflux disease (GERD). However, some may require invasive intervention for refractory disease. Due to the lack of prognostic tools in children, this study aimed to develop a predictive model for refractory GERD. METHODS: A retrospective review was performed in children with symptoms of GERD at a university hospital. Refractory GERD was defined as an unresponsive disease after optimal treatment with medication for >8 weeks. The predictive model was constructed based on clinical features and 24-h multichannel intraluminal impedance-pH (MII-pH) monitoring results. RESULTS: A total of 205 children were included with a median (IQR) age of 0.6 (0.3, 2.0) years. Over half of the patients (59.5%) had motor disabilities. Forty-four children (21.5%) were diagnosed with refractory GERD and subsequently underwent fundoplication. Multivariable analysis suggested that the refractory disease was associated with motor disabilities (OR: 5.35; 95% CI: 2.06-13.91), recurrent aspiration pneumonia (OR: 2.78; 95% CI: 1.24-6.26), prematurity with an onset of GERD at a post-conceptual age <40 weeks (OR: 6.76; 95% CI: 1.96-23.33), and abnormal total reflux episodes according to age (OR: 2.78; 95% CI: 1.24-6.19), but not the acid exposure time or symptom association analysis. The predictive model for refractory GERD based on associated factors revealed an area under the ROC curve of 76.8% (95% CI: 69.2%-84.3%) with a sensitivity of 77.3% and a specificity of 64% when applying a cutoff score of ≥2.5. CONCLUSIONS: The predictive model, using clinical features and MII-pH, may be an additional tool to predict refractory GERD in young children.

Bilirubin-Induced Transcriptomic Imprinting in Neonatal Hyperbilirubinemia.

Recent findings indicated aberrant epigenetic control of the central nervous system (CNS) development in hyperbilirubinemic Gunn rats as an additional cause of cerebellar hypoplasia, the landmark of bilirubin neurotoxicity in rodents. Because the symptoms in severely hyperbilirubinemic human neonates suggest other regions as privileged targets of bilirubin neurotoxicity, we expanded the study of the potential impact of bilirubin on the control of postnatal brain development to regions correlating with human symptoms. Histology, transcriptomic, gene correlation, and behavioral studies were performed. The histology revealed widespread perturbation 9 days after birth, restoring in adulthood. At the genetic level, regional differences were noticed. Bilirubin affected synaptogenesis, repair, differentiation, energy, extracellular matrix development, etc., with transient alterations in the hippocampus (memory, learning, and cognition) and inferior colliculi (auditory functions) but permanent changes in the parietal cortex. Behavioral tests confirmed the presence of a permanent motor disability. The data correlate well both with the clinic description of neonatal bilirubin-induced neurotoxicity, as well as with the neurologic syndromes reported in adults that suffered neonatal hyperbilirubinemia. The results pave the way for better deciphering the neurotoxic features of bilirubin and evaluating deeply the efficacy of new therapeutic approaches against the acute and long-lasting sequels of bilirubin neurotoxicity.

Exploring the Connection of Brain Computer Interfaces and Multimedia Use With the Social Integration of People With Various Motor Disabilities: A Questionnaire-Based Usability Study.

We have designed a platform to aid people with motor disabilities to be part of digital environments, in order to create digitally and socially inclusive activities that promote their quality of life. To evaluate in depth the impact of the platform on social inclusion indicators across patients with various motor disabilities, we constructed a questionnaire in which the following indicators were assessed: (i) Well Being, (ii) Empowerment, (iii) Participation, (iv) Social Capital, (v) Education, and (vi) Employment. In total 30 participants (10 with Neuromuscular Disorders-NMD, 10 with Spinal Cord Injury-SCI, and 10 with Parkinson's Disease-PD) used the platform for ~1 month, and its impact on social inclusion indicators was measured before and after the usage. Moreover, monitoring mechanisms were used to track computer usage as well as an online social activity. Finally, testimonials and experimenter input were collected to enrich the study with qualitative understanding. All participants were favorable to use the suggested platform, while they would prefer it for longer periods of time in order to become "re-awakened" to possibilities of expanded connection and inclusion, while it became clear that the platform has to offer them further the option to use it in a reclining position. The present study has clearly shown that the challenge of social inclusion cannot be tackled solely with technology and it needs to integrate persuasive design elements that foster experimentation and discovery.

Risk Factors for Long Bone Fractures in Patients with Severe Motor and Intellectual Disabilities: A 6-year Follow-up Retrospective Study.

Objectives: We investigated the clinical situation of fractures that occurred in patients in the severely disabled patients' ward of our hospital. The study aimed to identify risk factors for the occurrence of long bone fractures in the extremities, which pose problems in nursing care. Methods: We retrospectively studied fractures that occurred between April 2015 and March 2021 among a total of 126 patients in the severely disabled patients' ward of our hospital. The fracture site, frequency of occurrence, cause of injury, and other parameters were investigated. We statistically compared the fracture group and non-fracture group with respect to age, sex, body position before fracture, motor function, food intake status, body mass index, use of anti-epileptic drugs, hip dislocation, and maximum extension angle and range of motion of elbow/knee joints. Results: Among 126 patients, a total of 35 fractures occurred in 28 patients (22%). There were 19 long bone fractures of the extremities in 17 patients. Multiple logistic regression analysis using the occurrence of long bone fractures of the extremities as the objective variable identified the following significant independent variables: age [odds ratio (OR)=1.087, P=0.008], maximum extension angle of the elbow joint (OR=1.039, P=0.023), range of motion of the elbow joint (OR=0.940, P=0.003), and range of motion of the knee joint (OR=0.972, P=0.034). Conclusions: This study reveals that older age and flexion contracture of elbow and knee joints are risk factors for the occurrence of long bone fractures in severely disabled patients.

The Impact of Whole-Body Vibration Training on Bone Minerals and Lean Mass in Children and Adolescents with Motor Disabilities: A Systematic Review and Meta-Analysis.

Whole-body vibration training (WBVT) offers a potential auxiliary treatment method for the rehabilitation of motor disabilities to address a reduction in bone minerals and lean mass caused by motor-disability rehabilitation. The aim of this review was to analyze the efficacy of WBVT in muscle-bone rehabilitation. In order to investigate the potential effect of WBVT on children and adolescents with motor disabilities, a meta-analysis was carried out. From January 2006 to June 2021, studies that met certain criteria were searched for in the Scopus, PubMed, Web of Science, and EBSCO databases. An analysis of standardized mean differences was performed using the STATA 15.1 software with a 95% confidence interval (PROSPERO registration number: CRD42021258538). Eight studies were selected that included 179 male and 139 female children and adolescents suffering from motor disabilities. The results of the meta-analysis showed that WBVT significantly improved femur bone-mineral density ((p < 0.01, z = 2.66), standardized mean difference (SMD) (95% CI) = 0.41 (0.11, 0.72)), total body-bone mineral content ((p < 0.01, z = 3.08), SMD (95% CI) = 0.26 (0.10, 0.43)), and lean mass ((p < 0.01, z = 2.63), SMD (95% CI) = 0.22 (0.06, 0.39)). In addition, there was no significant effect of WBVT on lumbar spine bone mineral density in the disabled children and adolescents ((p = 0.21, z = 1.25), SMD (95% CI) = 0.17 (-0.10, 0.43)). WBVT can improve femur bone density, total body bone mineral content, and lean mass in children and adolescents suffering from motor disabilities, while there is no effect on lumbar-spine bone density. WBVT can be used as a potential program to improve bone minerals in children and adolescents with motor disabilities.

Assessment of barriers for people with disability to enjoy national parks.

There is increasing awareness of the importance of nature-based recreation to human wellbeing. Given its significant benefits, natural-protected area management has not always provided equitable access to all potential users. Limited research till now has been focused on how the outdoor barriers impact the equal enjoyment of people with mobility/motor disabilities (PwMDs) of nature when promoting sustainable nature-based tourism. This study intends to shed light on those aspects which constrain the PwMD's enjoyment of the great outdoors at national parks (NPs). The study was carried out in Canada and Spain through an online survey on amenities needed and accessibility barriers for PwMDs in parks. It was analyzed through log-linear models for cross-frequency tables, which allow us to estimate the associations between questions/variables and, thus, ultimately, obtain insights into how the needs of amenities and accessibility barriers can affect and limit PwMDs' enjoyment of natural parks. The results show a predisposition on the part of participants to enjoy parks more frequently than they usually do, as well as a preference for forests and mountain landscapes. Information and communication technologies are the tools most chosen to prepare for their trip and visit to the park. PwMD finds barriers in NPs as impediments to benefit from nature-based recreation and adding to their wellbeing. NP managers should take into consideration that PwMD's visits to parks are related to the main obstacles they perceive such as slopes and pavement and that they require amenities such as recreation and signposting. They would also like to enjoy parks more often, with footpaths suitable for walkability/wheelability, e.g., compact pavement, low inclines, and adequate signposting. In addition to the physical barriers, managers should also consider intrapersonal and interpersonal constraints to provide outdoor activities in parks focused on PwMDs' needs.

Considerations Regarding the Characteristics of Disabilities and the Result of PCR Tests during a COVID-19 Outbreak at a Facility for Persons with Disabilities / The Japanese Journal of Rehabilitation Medicine

Objective：As the number of patients with SARS-CoV-2 infection (COVID-19) increases, the infection control measures at facilities for persons with disabilities are also having a great impact. In January 2021, there was an outbreak at our facility for children with disabilities, which was found to have a total of 42 PCR-positive persons, 16 admitted patients, and 26 staff members. Although the 16 admitted patients had a mild illness, it was challenging to deal with it because we needed to continue nursing in the facility while taking isolation measures. Analysis was performed to determine the association between the characteristics of disabilities and the result of PCR tests.Methods：Multivariate nominal logistic regression analysis was performed to determine the association of age, sex, intellectual level, and degree of motor disabilities of all admitted patients with the results of PCR tests.Results：Age, sex, and intellectual level were not associated to the results of PCR tests. However, regarding degree of motor disabilities, there were significantly more PCR positive persons in the self-movable group than in the bedridden group.Conclusion：In our facility, contacts among patients and between patients and staffs are close because all patients need supports for individual disabilities. In particular, the self-movable group tends to be densely crowded and to have close relationships with each other, which was considered to be one of the factors of the outbreak. In facilities for persons with disabilities, infection control could be more difficult for patients who maintain a certain degree of self-movable functions.

Considerations Regarding the Characteristics of Disabilities and the Result of PCR Tests during a COVID-19 Outbreak at a Facility for Persons with Disabilities / The Japanese Journal of Rehabilitation Medicine

Objective：As the number of patients with SARS-CoV-2 infection (COVID-19) increases, the infection control measures at facilities for persons with disabilities are also having a great impact. In January 2021, there was an outbreak at our facility for children with disabilities, which was found to have a total of 42 PCR-positive persons, 16 admitted patients, and 26 staff members. Although the 16 admitted patients had a mild illness, it was challenging to deal with it because we needed to continue nursing in the facility while taking isolation measures. Analysis was performed to determine the association between the characteristics of disabilities and the result of PCR tests.Methods：Multivariate nominal logistic regression analysis was performed to determine the association of age, sex, intellectual level, and degree of motor disabilities of all admitted patients with the results of PCR tests.Results：Age, sex, and intellectual level were not associated to the results of PCR tests. However, regarding degree of motor disabilities, there were significantly more PCR positive persons in the self-movable group than in the bedridden group.Conclusion：In our facility, contacts among patients and between patients and staffs are close because all patients need supports for individual disabilities. In particular, the self-movable group tends to be densely crowded and to have close relationships with each other, which was considered to be one of the factors of the outbreak. In facilities for persons with disabilities, infection control could be more difficult for patients who maintain a certain degree of self-movable functions.

Genetic Testing in Various Neurodevelopmental Disorders Which Manifest as Cerebral Palsy: A Case Study From Iran.

Purpose: Cerebral palsy (CP) is a heterogeneous permanent disorder impacting movement and posture. Investigations aimed at diagnosing this disorder are expensive and time-consuming and can eventually inconclusive. This study aimed to determine the diagnostic yield of next generation sequencing in patients with atypical CP (ACP). Methods: Patient eligibility criteria included impaired motor function with onset at birth or within the first year of life, and one or more of the following conditions: severe intellectual disability, positive family history, brain imaging findings not typical for cerebral palsy, abnormal neurometabolic profile, intractable seizure, normal neuroimaging despite severe psychomotor disability, after pediatric neurologist assessment including neuroimaging and biochemical-metabolic study offered for genetic study. Results: Exome sequencing was done for 66 patients which revealed pathogenic, likely pathogenic, and variants of unknown significance in 36.2, 9, and 43.9%, respectively. We also found 10 new mutations and were able to suggest specific and personalized treatments for nine patients. We also found three different mutations with different phenotypical spectrum in one gene that have not been reported for cerebral palsy. Conclusion: An accurate history and physical examination and determination of patients with atypical cerebral palsy for doing exome sequencing result in improved genetic counseling and personalized management.

Assistive technologies for children with cognitive and/or motor disabilities: interviews as a means to diagnose the training needs of informal caregivers.

PURPOSE: The present study seeks to survey information and training needs of informal caregivers related to the use of assistive technologies at home, so as to, in the near future, try to meet them. Therefore, the full aim of this study is to contribute to reducing technology abandonment and to enhancing its use in the family setting by children with cognitive and/or motor limitations. MATERIALS AND METHODS: Content analysis of a set of ten interviews with informal caregivers of children and youngsters with cognitive and/or motor disabilities. RESULTS: Assistive technologies open a wide range of opportunities, mostly to students whose learning skills diverge from standard development. They promote communication, independence as well as inclusion of children with cognitive and/or motor disabilities. Despite the human and material resources available, the implementation of assistive technologies in many family settings is still a struggling task. The results reveal a perspective on (i) the interaction between those caregivers and their children, (ii) children's skills in using assistive technology, (iii) caregivers' digital literacy and (iv) their training needs. CONCLUSIONS: The present paper highlights the fact that carrying out interviews with informal caregivers leads to obtaining significant data for a diagnosis of the use of assistive technologies in the family setting and to assess the needs of informal caregivers. From this study, the need to provide caregivers with further training on assistive technologies emerges as preponderant, and to improve caregivers' skills in the search for and access to practical information.Implication for RehabilitationCognitive and/or motor disabilities impact on communication, independence and also on the full inclusion of children, especially when efforts developed at school do not have any follow up at home.Endowing informal caregivers with the knowledge and skills to use assistive devices with their children is a step forward to their full development.Interviews conducted with informal caregivers are a means to gaining insights into understanding the reasons behind assistive technology abandonment at home.

A Comparison of the Greek ACE-III, M-ACE, ACE-R, MMSE, and ECAS in the Assessment and Identification of Alzheimer's Disease.

OBJECTIVE: This study aimed to adapt the Addenbrooke's Cognitive Examination-III (ACE-III) and Mini-Addenbrooke's Cognitive Examination (M-ACE) into Greek and then to examine the convergent validity against their predecessors Addenbrooke's Cognitive Examination-Revised (ACE-R) and Mini-Mental State Examination (MMSE) in a Greek population. Moreover, a primary aim was to appraise the utility of each screen by conducting a comparison of the psychometric properties of ACE-III, M-ACE, ACE-R, MMSE, and the Edinburgh Cognitive and Behavioural Amyotrophic Lateral Sclerosis (ALS) Screen (ECAS) in detecting Alzheimer's disease (AD). METHODS: Forty patients with AD were recruited and matched with 38 controls. Bayesian Pearson's correlation analysis was conducted to examine the convergent validity. Receiver operating characteristic curve analysis was implemented to appraise the sensitivity and specificity of the tests in detecting AD. RESULTS: The ACE-III, M-ACE, and the ECAS scores robustly correlated with ACE-R and MMSE. The ACE-III and the ECAS-ALS Non-Specific score were the most sensitive and specific tools in detecting AD, closely followed by ECAS Total score and M-ACE. Only ECAS Total score correlated with the duration of disease. The ECAS scores were more resilient to ceiling effects than the other screens. M-ACE produced fewer ceiling effects than MMSE. CONCLUSION: The Greek ACE-III and M-ACE were successfully adapted and showed good convergent validity against their predecessors. They showed very good psychometric properties in detecting AD and may be considered in hectic clinical settings. ECAS Total score and ECAS-ALS Non-Specific showed comparable psychometric properties in the detection of AD and may be considered in polypathological clinics where motor impairments are common.

Do clowns attenuate pain and anxiety undergoing botulinum toxin injections in children?

OBJECTIVE: Botulinum toxin injection (BTI) is the primary treatment for spasticity in children. Anxiety and pain are important concerns to address to attenuate the discomfort of BTI. The aim of this study was to compare the effectiveness of medical clowns and usual distractions, both added to nitrous oxide (N2O) and analgesic cream, on pain and anxiety during BTI sessions in children. METHODS: The primary outcome was pain evaluated by the Face, Legs, Activity, Cry, Consolability (FLACC) scale. Secondary criteria were pain rated on a Visual Analog Scale (VAS) by the child and parent, anxiety rated on a VAS before and during BTIs by the child and parent(s), rating of the success of the sessions on a 4-point Likert scale by the physician and parent(s), and rating of the benefits of the distraction by the parent(s). Non-parametric tests were used for between-group comparisons. RESULTS: Baseline group characteristics of the clown and control groups did not differ. During 88 BTI sessions (40 with clown distraction and 48 with control distraction) in 59 children (35 boys; 52 with cerebral palsy, 12 with moderate to severe cognitive disorders), median maximal FLACC score was 2.5 (interquartile range [IQR]: 1-4) in the clown group and 3 (IQR: 1-4.3) in the control group. VAS self-reported pain score was 2.5 (IQR: 0-5) and 3 (IQR: 1-6.3) in the clown and control groups (P=0.56), and VAS proxy-reported pain score was 2.5 (IQR: 0.3-3.4) and 3 (IQR: 1-4.5) (P=0.25). After BTI sessions, the 2 groups did not differ in VAS self- and proxy-reported anxiety (P=0.83 and P=0.81). Physician and parent ratings of the success of sessions were similar between the groups (P=0.89 and P=0.11). Parent ratings of the perceived benefits of distraction were higher in the clown than control group (P=0.004). CONCLUSIONS: Although clown distraction was particularly appreciated by parents, it did not significantly reduce pain or anxiety in children as compared with usual distraction. TRIAL REGISTRATION: ClinicalTrials.gov ID: NCT03149263.

An empirical evaluation of a hands-free computer interaction for users with motor disabilities.

Standard computer input devices such as a mouse or a keyboard are not well suited to the needs of users with severe motor disabilities in their interaction with standard computer interfaces. The emergence of contemporary human computer interfaces has allowed for the development of innovative solutions for hands-free Human-Computer Interaction (HCI), which can improve the quality and accessibility of Information and Communication Technology (ICT) for motor-impaired users. The objectives of this study were to design, develop and evaluate a solution for a hands-free HCI, based on the Emotiv EPOC+ device, which, among other capabilities, also enables controlling the computer with facial expressions and motion sensors. Ten non-disabled adults and eight adults with a severe motor disability participated in an experiment to evaluate the proposed HCI solution. Eighteen users completed six experimental tasks successfully using both their existing computer use approach as well as the proposed hands-free computer use approach. The times necessary to complete the tasks were measured and analyzed, along with users' subjective observations about the difficulty level of both computer use approaches. Users' perceptions about the new hands-free computer use approach were assessed as well. Although there were no significant differences in both user types regarding the difficulty level in completing the tasks, disabled users solved the tasks with less effort. Positive perceptions about perceived usefulness, ease of use, appropriateness of the technology, and satisfaction with the proposed solution for touchless interaction were assessed for both user types. Scores were significantly higher for disabled users in the case of measuring the perceived usefulness, perceived ease of use and satisfaction with the solution. This study showed that users with severe motor difficulties find new HCI less challenging compared to their existing computer use approach than the non-disabled who use standard HCI. When compared with non-disabled users, the disabled ones can be equally effective when confronted with a new HCI technology. Future work is needed to improve the proposed solution and to analyze the impact of different factors on users with motor disabilities and their adoption of an innovative technology for touchless interaction with a computer.

The convergent validity of a Dutch Screening tool for Dysphagia (Signaleringslijst Verslikken) for people with severe or profound intellectual and multiple disabilities.

BACKGROUND: Dysphagia is potentially life-threatening and highly prevalent in people with severe/profound intellectual and multiple disabilities (SPIMD). The "Signaleringslijst Verslikken" (SV) is a frequently used Dutch screening tool to detect dysphagia. The aim was to examine the convergent validity of the SV for people with SPIMD. METHOD: Direct support staff completed the SV, with speech and language therapists scoring a validated tool, the Dysphagia Disorders Survey (DDS), for 41 persons with SPIMD, aged ≥50 years. The results were compared for agreement using the McNemar's Test. RESULTS: The proportion of agreement was 0.59 (95% CI 0.43-0.72). The SV did not detect dysphagia in 17 participants (44%) who were assessed as having dysphagia according to the DDS. The difference in proportion of detection of dysphagia between the two methods was significant (p < 0.0001). CONCLUSIONS: The results suggest that the convergent validity of the SV is insufficient: the SV is not sensitive for detecting dysphagia in people with SPIMD.

Addressing challenges for youths with mobility devices in winter conditions.

PURPOSE: Winter-related research about the experience of navigating in the urban context has mostly focused on the elderly population with physical disabilities. The aim of this project was to explore potential design solutions to enhance young people's mobility devices and the built environment to improve accessibility and participation in winter. METHODS: A multi-method qualitative design process included the following steps: (1) in-depth interviews; (2) photo elicitation; (3) individual co-design sessions; and (4) group co-design sessions (i.e., focus group). The participants were 13 youths (nine males and four females), aged 12-21, who used a wheelchair (12 power chair users and one manual wheelchair), for some with their parents, others without their parents, according to the parents' willingness to participate or not in the study (n = 13). The first two authors conducted group co-design sessions with mechanical engineers and therapists/clinicians in two Canadian cities to discuss the feasibility of the designs. Results (findings): The youths and their parents reported different winter-related challenges and proposed specific design solutions to enhance their participation and inclusion in winter activities. Seven of these designs were presented at two group co-design sessions of therapists/clinicians and engineers. Two designs were found to be feasible: (1) a traction device for wheelchairs in snow and (2) a mat made of rollers to clean snow and dirt from tires. The results of this research highlight the frustrations and challenges youths who use wheelchairs encounter in winter and a need for new solutions to ensure greater accessibility in winter. CONCLUSIONS: Therapists/clinicians and designers should address winter-related accessibility problems in areas with abundant snow. Implications for Rehabilitation Several studies show that current urban contexts do not necessarily respond accurately to the needs of individuals with limited mobility. Winter-related research about the experience of navigating in the urban context is limited and has mostly focused on the elderly population with physical disabilities. Our results clearly show that youth who use mobility devices want to be able to get around in the snow, wander outdoors, play and enjoy social participation in activities with their peers and friends. Our findings provide a starting point for the development of additional studies to seek a better understanding of the person-environment interaction in winter conditions, with tangible results in the form of better design solutions. Clinicians and designers must address such issues in northern countries and areas where snow is abundant.

Patterns of multimorbidity in people with severe or profound intellectual and motor disabilities.

BACKGROUND: People with severe or profound intellectual and motor disabilities (SPIMD) experience multimorbidity and have complex health needs. Multimorbidity increases mortality, decreases functioning, and negatively influences quality of life. Information regarding patterns of multimorbidity in people with SPIMD may lead to proactive prevention, specifically detection and treatment of physical health problems at an early stage and prevention of secondary complications. AIM: The aim of this study was to explore patterns of multimorbidity in individuals with SPIMD. METHODS AND PROCEDURES: Data from medical records and care plans on reported physical health problems of 99 adults with SPIMD were analysed. To explore the co-occurrence of physical health problems, cross tabulations and a 5-set Venn Diagram were used. OUTCOMES AND RESULTS: The most common combination of two physical health problems comprise the most prevalent physical health problems, which included visual impairment, constipation, epilepsy, spasticity, and scoliosis. These five issues occurred as a multimorbidity combination in 37% of the participants. In 56% of the participants a multimorbidity combination of four health problems emerged, namely constipation, visual impairment, epilepsy, and spasticity. CONCLUSIONS AND IMPLICATIONS: People experiencing SPIMD have interrelated health problems. As a consequence, a broad variety of potential interactions between physical health problems and their treatments may occur. Identifying multimorbidity patterns can provide guidance for accurate monitoring of persistent health problems and, early detection of secondary complications. However, the results require confirmation with larger samples in further studies.