Aphasia disrupts usual care: "I'm not mad, I'm not deaf" - the experiences of individuals with aphasia and family members in hospital.

PURPOSE: Communication difficulties are highly prevalent in the stroke population, with implications for patient experience, safety and outcomes. This study explores the experiences of people with aphasia and family members regarding healthcare communication in acute and subacute stroke settings. METHODS AND MATERIALS: A phenomenological approach was used to understand participants' experiences. Participants took part in a focus group and data were analysed using an inductive thematic approach. RESULTS: For individuals with aphasia (n = 4) and family members (n = 2), five themes were generated: "aphasia makes it hard to communicate," "hospital staff focus on the patient's medical status only," "people with aphasia do not get the help they need to improve," "staff lack the skills to communicate with people with aphasia," and "staff are crucial to improving healthcare communication." CONCLUSIONS: The stroke team has expertise in the medical management of stroke but struggle to communicate with patients with aphasia. Patients' experience of healthcare communication is often one-way and limited to following instructions, with missed opportunities to discuss core topics such as prognosis, rehabilitation, and person-specific needs. Patients and families assert that all members of the stroke healthcare team should be able to adapt communication to accommodate patients.

Person-centred care is not a reality for many patients with aphasia.Many healthcare conversations, including informal assessments and discussing prognosis, are not accessible for people with aphasia.Consequently, for people with aphasia, healthcare in hospital is characterised by confusion and exclusion.Staff are crucial to improving healthcare communication; when appropriate strategies were used, these were not only effective but very meaningful to patients.

Aphasia disrupts usual care: the stroke team's perceptions of delivering healthcare to patients with aphasia.

PURPOSE: Communication disability, including aphasia, is prevalent in the stroke population and impacts service delivery. This study explored the experiences of the multidisciplinary stroke team in delivering healthcare to patients with aphasia. MATERIALS AND METHODS: A phenomenological approach was used to understand the experiences of delivering healthcare services in the presence of aphasia. Healthcare professionals (n = 16) were recruited across acute and subacute stroke care, with a range of discipline backgrounds and experience. Participants took part in focus groups and data were analysed using an inductive thematic approach. RESULTS: Five themes were evident: 1) aphasia is time consuming, 2) health professionals do not know how to help, 3) health professionals limit conversations with patients with aphasia, 4) health professionals want to know how to help, and 5) health professionals feel good after successful communication. CONCLUSIONS: Aphasia disrupts usual care. Health professionals want to help but are working in a non-optimal environment where communication and patient-centred care are not adequately resourced. A video abstract is available in Supplementary Material.IMPLICATIONS FOR REHABILITATIONCurrent hospital systems and ward culture make it difficult to offer patient-centred care to patients with aphasia.Health professionals want to help patients with aphasia but are working in an environment where patient-provider communication is not adequately resourced.As a result, health professionals dread, limit or avoid talking with patients with aphasia.Health professionals need support which may include ongoing education and on-the-job training, and a change in ward culture including key performance indicators focusing on patient-provider communication.

Digitally-Mediated Social Stories Support Children on the Autism Spectrum Adapting to a Change in a 'Real-World' Context.

Social Stories™ (SS) is a widely used intervention for children on the autism spectrum. A preliminary survey of 103 practitioners highlighted that SS are often used to support adapting to a change. This study investigated the use of digitally-mediated SS to support ten children on the autism spectrum attending a school summer camp. Teacher perceptions of anxiety, understanding and closeness to the goal of the SS were assessed before and after the intervention (prior to the event). The pre- post-intervention comparisons highlighted significant improvements in child understanding, anxiety, and closeness to goal with medium-large effect sizes. The child's understanding and closeness to SS goal post-intervention related to their difficulties with the SS goal and their anxiety during the event.

Scoring of Coronary Artery Disease Characteristics on Coronary CT Angiograms by Using Machine Learning.

Background Coronary CT angiography contains prognostic information but the best method to extract these data remains unknown. Purpose To use machine learning to develop a model of vessel features to discriminate between patients with and without subsequent death or cardiovascular events. Performance was compared with that of conventional scores. Materials and Methods Coronary CT angiography was analyzed by radiologists into four features for each of 16 coronary segments. Four machine learning model types were explored. Five conventional vessel scores were computed for comparison including the Coronary Artery Disease Reporting and Data System (CAD-RADS) score. The National Death Index was retrospectively queried from January 2004 through December 2015. Outcomes were all-cause mortality, coronary heart disease deaths, and coronary deaths or nonfatal myocardial infarctions. Score performance was assessed by using area under the receiver operating characteristic curve (AUC). Results Between February 2004 and November 2009, 6892 patients (4452 men [mean age ± standard deviation, 51 years ± 11] and 2440 women [mean age, 57 years ± 12]) underwent coronary CT angiography (median follow-up, 9.0 years; interquartile range, 8.2-9.8 years). There were 380 deaths of all causes, 70 patients died of coronary artery disease, and 43 patients reported nonfatal myocardial infarctions. For all-cause mortality, the AUC was 0.77 (95% confidence interval: 0.76, 0.77) for machine learning (k-nearest neighbors) versus 0.72 (95% confidence interval: 0.72, 0.72) for CAD-RADS (P < .001). For coronary artery heart disease deaths, AUC was 0.85 (95% confidence interval: 0.84, 0.85) for machine learning versus 0.79 (95% confidence interval: 0.78, 0.80) for CAD-RADS (P < .001). When deciding whether to start statins, if the choice is made to tolerate treating 45 patients to be sure to include one patient who will later die of coronary disease, the use of the machine learning score ensures that 93% of patients with events will be administered the drug; if CAD-RADS is used, only 69% will be treated. Conclusion Compared with Coronary Artery Disease Reporting and Data System and other scores, machine learning methods better discriminated patients who subsequently experienced an adverse event from those who did not. © RSNA, 2019 Online supplemental material is available for this article. See also the editorial by Schoepf and Tesche in this issue.

Communication access on trains: a qualitative exploration of the perspectives of passengers with communication disabilities.

PURPOSE: The often-invisible access barriers to public transport encountered by people with communication disabilities, who have sensory, language or cognitive impairments have gained little attention. This study investigated the experiences of people with communication disabilities on a rail network in Victoria, Australia to identify the barriers they encountered. METHODS: Twenty-one passengers with communication disabilities participated in either an individual interview or a focus group. They talked about their experiences of train travel, factors that made travelling difficult and suggestions for making travelling easier. A six-phase approach to thematic analysis was conducted to identify themes. RESULTS: The difficulties identified in travelling fell into three themes: (a) variable accessibility of information, (b) negative impact of a large and complex service system, and (c) an uncertain culture of help seeking and giving. Only two passengers had ever complained but all identified ways to improve the service. They suggested, better staff training, more use of communication tools, mechanisms to enable passengers to seek help, and attention to making information easier to understand. CONCLUSIONS: For transport to be accessible to people with communication disabilities many different types of adjustment are required. Using multiple modes of communication with attention to understandability and consistent responses from public contact staff skilled to interact in multiple ways, may be the most flexible and effective means of responding to difficulties posed by the complex and unpredictable nature of train services. Implications for Rehabilitation People with communication disabilities are a diverse group which includes people with physical, sensory, speech, language, and cognitive impairments. Public transport services need to provide a range of communication adjustments to enable people with communication disabilities to travel successfully. Transport services must retain and refine accessible alternatives to online information and booking systems for people with cognitive impairments to avoid widening the digital divide. Frequent and unavoidable changes to train services mean that skilled public contact staff, access to information and a culture of help seeking and giving are particularly important in facilitating access for people with communication disabilities.

Perspectives of a mobile application for people with communication disabilities in the community.

Purpose To determine the perceptions of people with complex communication needs (CCN) and business staff regarding the uses and functionality of a mobile application to aid communication access. Method A qualitative study using thematic analysis of transcripts and field notes from focus groups and interviews of 19 people with CCN and nine business staff. Results Four themes and 10 subthemes were drawn from the data. Themes highlighted the desire for: increased communication strategies to support customer interactions, increased access to information, functionality of a mobile application to increase its utility, and preferred technical and visual features of mobile applications. Conclusion People with CCN and business staff perceived a mobile application as a useful tool to aid communication access. This research highlighted the importance of facilitating strategies to communicative interactions and information in the community as the fundamental goal of a mobile application developed to support communication access. Implications for Rehabilitation Mobile applications are widely accepted and used in modern customer service industries and have been identified as tools to increase communication access for people with complex communication needs (CCN). People with CCN identified accessibility, presentation, and customisation as important features of mobile applications for communication access. The diversity of user preferences and needs, and the rapid development of new technologies limit the applicability of a single design for mobile applications for people with CCN. People with CCN should be involved in application design and development. A mobile application for communication access would support customer-business interactions as well as enable more accessible information sharing about disability needs and services.

Deficits in metacognitive monitoring in mathematics assessments in learners with autism spectrum disorder.

Children and adults with autism spectrum disorder have been found to have deficits in metacognition that could impact upon their learning. This study explored metacognitive monitoring in 28 (23 males and 5 females) participants with autism spectrum disorder and 56 (16 males and 40 females) typically developing controls who were being educated at the same level. Participants were asked a series of mathematics questions. Based upon previous research, after each question they were asked two metacognitive questions: (1) whether they thought they had got the answer correct or not (or 'don't know') and (2) whether they meant to get the answer correct or not (or 'don't know'). Participants with autism spectrum disorder were significantly more likely than the typically developing group to erroneously think that they had got an incorrect answer correct. Having made an error, those with autism spectrum disorder were also significantly more likely to report that they had meant to make the error. Different patterns in the types of errors made were also identified between the two groups. Deficits in metacognition were identified for the autism spectrum disorder group in the learning of mathematics. This is consistent with metacognitive research from different contexts and the implications for supporting learning in autism spectrum disorder are discussed.

Emotion recognition in animated compared to human stimuli in adolescents with autism spectrum disorder.

There is equivocal evidence as to whether there is a deficit in recognising emotional expressions in Autism spectrum disorder (ASD). This study compared emotion recognition in ASD in three types of emotion expression media (still image, dynamic image, auditory) across human stimuli (e.g. photo of a human face) and animated stimuli (e.g. cartoon face). Participants were 37 adolescents (age 11-16) with a diagnosis of ASD (33 male, 4 female). 42 males and 39 females served as typically developing, age-matched controls. Overall there was significant advantage for control groups over the ASD group for emotion recognition in human stimuli but not animated stimuli, across modalities. For static animated images specifically, those with ASD significantly outperformed controls. The findings are consistent with the ASD group using atypical explicit strategies.

Augmentative and alternative communication supports for adults with autism spectrum disorders.

Many adults with autism spectrum disorders have complex communication needs and may benefit from the use of augmentative and alternative communication. However, there is a lack of research examining the specific communication needs of these adults, let alone the outcomes of interventions aimed at addressing them. The aim of this study was to explore the views and experiences of support workers and family members regarding the outcomes of providing low-technology communication aids to adults with autism spectrum disorders. The participants were six support workers and two family members of six men and women with autism spectrum disorders, who had received low-technology communication aids. Using semi-structured, in-depth interviews and following thematic analysis, the results revealed strong support for, and the potential benefits of, augmentative and alternative communication for both adults with autism spectrum disorders and their communication partners. The results also revealed inconsistencies in the actions taken to support the use of the prescribed augmentative and alternative communication systems, pointing to the clinical need to address common barriers to the provision of augmentative and alternative communication support. These barriers include organisational practices and limitations in the knowledge and skills of key stakeholders, as well as problematic attitudes.

Experiences of adults with complex communication needs receiving and using low tech AAC: an Australian context.

PURPOSE: We explored the experiences of adults who received aids through the Non-Electronic Communication Aids Scheme (NECAS). METHODS: Fifteen adults aged 21-74 years, with complex communication needs (nine males) associated with developmental (n = 10) or acquired disabilities (n = 5) who received NECAS aids, and 12 support people participated. Interviews provided data for thematic analysis. RESULTS: Participants used multi-modalities, reflecting that there is more than one way to communicate, but differed in using their augmentative and alternative communication (AAC) aids according to time and place. How NECAS and other forms of AAC, including electronic devices, were meeting communication needs varied, and reviewing needs was needed. Participants reported being empowered through reducing frustration, increasing independence and facilitating relationships. There were varied preferences for low versus high tech, according to speed of communication and tolerance for breakdowns. They differed in being concerned about what other people think when aids were used in the community, and reactions and attitudes of others. Owning the process emerged through varying degrees of participation in developing and updating their NECAS and other aids. CONCLUSIONS: The results are discussed in terms of the benefits of multimodal options, consumer-desired outcomes in research into the effectiveness of AAC and need for ongoing supports. Implications for Rehabilitation AAC includes both high (assistive)-technology and low-technology options. In order to implement best practice, AAC provision of low- and/or high-tech options must be driven by individual needs rather than service limitations. In this qualitative study, the benefits of access to various low- and high-tech AAC options to address needs and preferences are demonstrated.

A model of processes that underpin positive relationships for adults with severe intellectual disability.

BACKGROUND: Relationships develop through social interaction and assist with participation and inclusion. Little is known about how relationships develop between people with severe intellectual disability who have limited communication and others. METHOD: Interactions were observed between 6 adults with severe intellectual disability and paid workers or family members with whom those adults had positive relationships. Workers and family members were interviewed. The data were analysed through a grounded theory approach. RESULTS: Data analysis led to the identification of 5 processes that underpin positive relationships: recognising individuality, sharing the moment, connecting, feeling good, and sharing the message. CONCLUSIONS: A relationship model with clearly identified processes and sub-elements provides a framework for teaching others how to have positive relationships with people with severe intellectual disability. The model could be applied in training to support relationships between workers and people with a disability and more widely with other community members.

Prevalence and predictors of drooling in 7- to 14-year-old children with cerebral palsy: a population study.

AIM: To establish a prevalence estimate for drooling and explore factors associated with drooling in a population sample of children with cerebral palsy (CP) aged 7 to 14 years living in Victoria, Australia. METHOD: A self-report questionnaire was used to collect data on drooling from parents of children born between 1996 and 2001, and registered with the Victorian Cerebral Palsy Register. RESULTS: A total of 385 children (231 males, 154 females; mean age 10y 9mo [SD 1y 7mo], range 8-14y) were studied. The clinical type and distribution of CP were spastic (341), ataxic (16), dyskinetic (17), hypotonic (10), and unknown (1). Distribution in Gross Motor Function Classification System (GMFCS) levels was I (103), II (98), III (52), IV (63), V (61), and unknown (8). After adjustment for topographical pattern of motor impairment and GMFCS level, 40% were reported to have experienced drooling between 4 years of age and the time of completing the questionnaire. A significantly higher prevalence of drooling was found in children with poor gross motor function and in those with more severe presentations of CP, including poor head control, difficulty with eating, and inability to sustain lip closure (p<0.001 for each). Drooling was shown to be significantly associated with both intellectual disability and epilepsy in this group of children (p<0.001 for both). INTERPRETATION: With a prevalence of 40%, drooling is an important comorbidity in CP. It was considered severe in 15% of children. Poor oromotor function was associated with drooling and could be the target of interventions for this under-researched problem.

Social interaction with adults with severe intellectual disability: having fun and hanging out.

BACKGROUND: Social interaction is integral to social inclusion. Little is known about the nature of social interaction between adults with severe intellectual disability and those with whom they engage. METHOD: Participants were six adults with intellectual disability and people identified as those with whom they shared demonstrable pleasurable interactions. Data were collected through observation and interviews, and data were analysed using a constructivist grounded theory approach. RESULTS: An overarching category of sharing time together with two main sub-categories of Having fun and Hanging out emerged. Having fun was composed of routines and comedic interaction; hanging out was comprised of contact and presence. CONCLUSIONS: Legitimizing mirth and sharing time in social interactions may supplement paid worker job satisfaction and increase opportunities for social inclusion by people with severe intellectual disability.

The challenges and benefits of using participant observation to understand the social interaction of adults with intellectual disabilities.

Observation methods have been used in both communication and interaction research. Qualitative interpretive approaches are rare where participants have complex communication needs. Issues for qualitative researchers utilizing participant observation research methods have been well documented, but a similar discussion is lacking where the participants are people with severe intellectual disability. Observational data collected from a study of adults with severe intellectual disabilities in interaction with their social network members were scrutinized to identify challenges and benefits of participant observation. Challenges identified include the consent process, changing roles, and researcher intrusion. The use of participant observation with adults with severe intellectual disabilities allows for unexpected insights and provides context and credence for other lines of inquiry. Participant observation may be useful with other groups of people.

The pearl in the middle: a case study of social interactions in an individual with a severe intellectual disability.

BACKGROUND: People with severe intellectual disability have limited communication skills, small social networks, and may experience isolation. Little is known about how interactions occur with social network members and the role of social support. METHOD: An adult with a severe intellectual disability was observed in her daily environments. Her social network members were identified and interviewed. Data were analysed using a grounded theory approach. RESULTS: Fourteen social network members were identified. People with severe intellectual disability interact in different ways, which may not be understood by network members or conform to normative expectations. Still, network members experienced enjoyment, personal satisfaction, and love in their interactions. CONCLUSIONS: Social interactions with people with severe intellectual disability are challenging. The results point to the benefits of a focus on learning that makes interactions meaningful for each individual, sharing that information with network members, and considering ways to increase interactions and extend the social network.

The Drooling Impact Scale: a measure of the impact of drooling in children with developmental disabilities.

AIM: To describe the development and clinimetric properties of a new scale to evaluate changes in the impact of drooling in children with developmental disabilities. METHOD: After examining the properties of potential items, 10 items were retained for inclusion in the final Drooling Impact Scale. The clinimetric properties of the scale were evaluated using data from two convenience samples of children attending a saliva-control clinic: a stable group (n=31, 22 males, nine females; mean age 10y 7mo, SD 4y 5mo, range 3y 6mo-18y 3mo; cerebral palsy [CP] n=17, intellectual disability n=10; non-ambulatory n=13, nonverbal n=12) and an intervention group (n=49, 29 males, 20 females; mean age 11y, SD 3y 6mo, range 3y 4mo-16y 10mo; CP n=31, intellectual disability n=15; non-ambulatory n=27, nonverbal n=28). To assess validity, changes in scores on the Drooling Impact Scale over time were compared with a carer's global rating of change using Pearson's correlations and t-tests. A concordance correlation coefficient was used to compute the level of agreement between assessments 1 month apart in stable children. Effect size, standardized response mean, Guyatt responsiveness statistic, and an unpaired t-test were used to estimate responsiveness. RESULTS: The correlation between the global rating and change in Drooling Impact Scale scores was 0.69 (p<0.001). The concordance correlation coefficient was 0.85. An effect size of 1.8, standardized response mean of 1.5, Guyatt responsiveness statistic of 1.4, and mean group difference of 23.5 (95% confidence interval 17.4-29.6) were obtained. INTERPRETATION: The Drooling Impact Scale is a valid and reliable subjective measure that is responsive to change.

Left ventricular apical thinning as normal anatomy.

OBJECTIVE: Apical thinning of the left ventricular myocardium has been described by anatomists as a normal feature. Nonetheless, it does not appear in most anatomic atlases. We investigated its presence in healthy patients and patients with left ventricular hypertrophy using coronary computed tomographic arteriography (CCTA). METHODS: Sixty-four patients without a history of cardiac disease and 8 patients with left ventricular hypertrophy were imaged using coronary computed tomographic arteriography. RESULTS: All 64 patients had a focus of myocardial thinning at the left ventricular apex (mean, 1.2 mm [SD, 1.1 mm]). Its average span in the oblique coronal plane was 4.4 mm (2.9 mm), corresponding to a median area of 14.3 mm2 with an interquartile range of 3.9 to 31.6. The focus faced 4.8 degrees (5.9 degrees) toward the diaphragmatic side of the apex. The 8 hypertrophied hearts also had a zone of apical thinning. In a subset of 12 patients in whom functional data were analyzed, this focus did not thicken or move over the cardiac cycle. CONCLUSIONS: A zone of substantial thinning of the left ventricular apex is a normal anatomic feature.

Student and professional attitudes and interests in working with people with complex communication needs.

Speech-language pathology interest in working with people with complex communication needs was investigated in this study. Participants were third year speech-language pathology undergraduates and recent graduates who had participated in a unit on AAC. Undergraduates (n = 85) completed an Interaction with Disabled Persons attitudinal scale and a questionnaire about interest in various client groups before and after the unit. Some undergraduates (n = 34) repeated the attitudinal scale and completed another questionnaire 2 years after graduation. Recent graduates (n = 56) completed a questionnaire about working with people with complex communication needs and factors influencing work choices; 10 also participated in interviews or focus groups. We found a small but positive attitudinal shift for the undergraduates, but, along with previous disability experience, this was a weak predictor of working with this group. Working in developmental disability ranked low amongst undergraduate preferences. Most graduates were influenced in their job choices by a desire to work on a particular team and previous clinical placements. Questionnaires and interview/focus group data indicated the strong influence of clinical placements on later work choices. Participants who worked in disability appeared passionate about the work involved and offered suggestions for engaging more professionals with this group. Implications for speech-language pathology services in disability are discussed.

Copper and zinc tolerance of two tropical microalgae after copper acclimation.

Current toxicity tests with microalgae are often criticized as being overly sensitive to metals because algae are cultured in metal-deficient media. If such bioassays overestimate copper toxicity in surface waters, the relevance of water quality guidelines derived from these tests is questionable. In this study, the effect of acclimation to copper at environmentally relevant concentrations, on the sensitivity of the marine diatom Nitzschia closterium and the freshwater green alga Chlorella sp. to copper and zinc was examined. N. closterium was acclimated in culture medium containing 5 or 25 microg Cu L(-1) for 200 days, while Chlorella sp. was acclimated in medium containing 2 microg Cu L(-1) for 100 days. Changes in algal growth rates and copper and zinc tolerance were monitored using standard growth inhibition toxicity tests in minimal medium over 72 h. Neither of the two acclimated N. closterium cultures had increased zinc or copper tolerance compared with that of the nonacclimated algae, nor were there any changes in control growth rates. Similarly, no changes in copper tolerance or control growth rates were observed for the acclimated Chlorella sp. culture. This was supported by measurements of intracellular and extracellular copper which confirmed that there were no differences in copper accumulation in either acclimated or nonacclimated algae. These results suggest that these algae grown in standard culture media are generally no more sensitive than algae grown in a metal-enriched medium. This supports the continued use of current laboratory bioassays with microalgae, as part of a suite of tests for assessing metal bioavailability, for use in ecological risk assessments and for providing data for the derivation of water quality guidelines.