Craving inclusion: a systematic review on the experiences and needs of people with disability eating out.

Purpose: To systematically review the research relating to views and experiences of people with disability eating out in cafés, restaurants, and other settings; and identify factors that impede or enhance accessibility of eating out experiences, inform future inclusive research, and guide policy development.Materials and Methods: This study involved systematic search and review procedures with qualitative metasynthesis of the barriers to and facilitators for participation and inclusion in eating/dining-out activities. In total, 36 studies were included.Results: Most studies reviewed related to people with physical or sensory disability eating out, with few studies examining the dining experiences of adults with intellectual or developmental disability, swallowing disability, or communication disability. People with disability encountered negative attitudes and problems with physical and communicative access to the venue. Staff lacked knowledge of disability. Improvements in the design of dining spaces, consultation with the disability community, and staff training are needed.Conclusion: People with disability may need support for inclusion in eating out activities, as they encounter a range of barriers to eating out. Further research within and across both a wide range of populations with disability and eating out settings could guide policy and practice and help develop training for hospitality staff.

Some people with disability require support for increased self-determination and self-advocacy to access eating out experiences satisfactorily.Goals and strategies to increase access and participation in eating out activities for people with disability should include attention to the environment and hospitality venues and to staff training.Rehabilitation professionals have a role in training hospitality staff about disability access and inclusion in eating out activities.To enhance community inclusion and participation, rehabilitation professionals could focus more on the skills and strategies needed for people with disability to participate in eating out activities.Rehabilitation professionals could implement a range of facilitators that might strengthen participation in eating out activities for people with disability.

Self-advocacy with retailers by people with complex communication needs.

PURPOSE: The researchers aimed to discover what might prevent people with complex communication needs (CCNs) from making complaints if they experienced social exclusion in the retail environment. METHOD: Qualitative research methods were used to gather data from two groups of participants: adults with CCN and retail customer service staff. Seven adults who used speech-generating devices (SGDs) and who shopped independently were interviewed about their perceptions of retail customer service communication. Nine retail customer service staff were interviewed about their communication with customers with disability. Analysis using grounded theory provided insights into experiences of people with CCN. RESULT: All participants with CCN had experienced being ignored, patronised and excluded when shopping but faced barriers that prevented them from complaining. Those who did complain exhibited strong self-esteem. CONCLUSION: Participants with CCN experienced social exclusion because customer complaint mechanisms were inaccessible. Retailers and government agencies monitoring inclusion, as well as speech-language pathologists and disability advocates, place insufficient emphasis on retail communication as a vehicle for social inclusion. The researchers recommend strategies to strengthen self-advocacy by people with CCN and systemic changes to improve accessibility of complaints procedures in the retail sector.

Going thirsty for the turtles: Plastic straw bans, people with swallowing disability, and Sustainable Development Goal 14, Life Below Water.

PURPOSE: This paper relates to the Sustainable Development Goal (SDG) Life Below Water (SDG 14) and the need to consider Better Health and Well-Being (SDG 3) in interventions designed to reduce plastic straw waste. The aim of this paper is to explore the competing demands of saving the world's oceans and sea life from plastic straw waste, and simultaneously meeting the health and social needs of people with swallowing or physical disability who use plastic straws for drinking. RESULT: In order to meet both SDG 14 and not compromise SDG 3 there is a need for collaborative and interdisciplinary, person-centred, inclusive innovation approaches to finding suitable and acceptable alternatives to plastic straws. Many people with swallowing disability will need a durable, flexible, and single-use straw that is resilient enough to withstand jaw closure without breaking. Co-design considerations include the alternative straw being (a) soft and flexible so as not to damage the teeth of people who bite to stabilise the jaw or who have a bite reflex; (b) suitable for both hot and cold drinks; (c) flexible for angling to the mouth; (d) readily, thoroughly and easily cleaned to a high standard of hygiene; (e) widely available for low or no cost wherever drinks are served; and (f) safe for people to use while reducing impact on the environment and being sustainable. CONCLUSION: Plastic straws are an assistive technology critical for the social inclusion of people with disability. In an inclusive society, reaching a policy position on the provision of plastic straws must include seeking out and listening to the voices of people with sensory, intellectual, physical, or multiple disabilities who use plastic straws.

Views on the usability, design, and future possibilities of a 3D food printer for people with dysphagia: outcomes of an immersive experience.

PURPOSE: Although 3D food printing is expected to enable the creation of visually appealing pureed food for people with disability and dysphagia, little is known about the user experience in engaging with 3D food printing or the feasibility of use with populations who need texture-modified foods. The aim of this study was to explore the feasibility and usability of using domestic-scale 3D food printer as an assistive technology to print pureed food into attractive food shapes for people with dysphagia. MATERIALS AND METHODS: In total, 16 participants engaged in the unfamiliar, novel process of using a domestic-scale 3D food printer (choosing, printing, tasting), designed for printing pureed food, and discussed their impressions in focus group or individual interviews. RESULTS AND CONCLUSIONS: Overall, results demonstrated that informed experts who were novice users perceived the 3D food printing process to be fun but time consuming, and that 3D food printers might not yet be suitable for people with dysphagia or their supporters. Slow response time, lack of user feedback, scant detail on the appropriate recipes for the pureed food to create a successful print, and small font on the user panel interface were perceived as barriers to accessibility for people with disability and older people. Participants expected more interactive elements and feedback from the device, particularly in relation to resolving printer or user errors. This study will inform future usability trials and food safety research into 3D printed foods for people with disability and dysphagia. IMPLICATIONS FOR REHABILITATION3D food printers potentially have a role as an assistive technology in the preparation of texture-modified foods for people with disability and dysphagia.To increase feasibility, 3D food printers should be co-designed with people with disability and their supporters and health professionals working in the field of dysphagia and rehabilitation.Experts struggled to be able to print 3D pureed shapes owing to relatively low usability of the 3D food printer tested with problems using the interface and resolving problems in the print.3D food printing is a fun and novel activity and may help to engage people with disability and dysphagia in making choices around the shape of the food to be printed.

Education/Training Interventions to Improve Oral Health of Adults with Intellectual Disability.

People with intellectual disability have poorer oral health outcomes and experience greater difficulties accessing dental services than the rest of the community. Interdisciplinary educational programs for those involved in oral health decision making for people with intellectual disability aim to improve their oral health. This scoping review explored education/training interventions related to the oral health of adults with intellectual disability. Interventions targeted dental health and non-dental health professionals, adults with intellectual disability, and their paid and unpaid supporters. Six electronic databases were searched using PRISMA guidelines and the Crowes critical appraisal tool. The search strategy, plus the application of the inclusion and exclusion criteria, presented in the body of the manuscript, led to the selection of 20 papers for inclusion into this review. The quality of undergraduate tuition relating to disability was reported to be poor, but students and dental health professionals expressed interest in expanding their knowledge in this area. Disability-support workers and primary carers of people with intellectual disability reported improved knowledge and attitude, but the oral health status of the people they supported was not impacted. No research was found that explored the perspectives of non-dental health professionals. Oral health training/education contributes to systemic barriers in general health, wellbeing, and social inclusion of people with intellectual disability. Revision of disability-related programs in general dentistry courses and longitudinal impact research is needed.

Death by Choking or Dysphagia: A Review of Coronial Findings (Australia and Canada): A Picture of Preventable Death, Non-adherence to Written Recommendations, and Lack of Appropriate Supervision.

Choking and aspiration pneumonia are a leading cause of preventable death for people in residential care in Australia. In Victoria, in 2018-2019, 59% of deaths of persons in residential care that were referred to the coroner were from aspiration pneumonia. In 2016-2017, in New South Wales, the leading cause of death in people with disability living in residential care was pneumonitis caused by solids and fluids in the lungs. Such deaths are closely linked with swallowing problems (dysphagia) and people with cognitive impairments and multiple health issues, including mental health issues, are most at risk. This commentary focuses on coronial inquests where coroners' findings have identified dysphagia or aspiration pneumonia as a cause of death or a contributor to a person's death. It also includes a summary of the recommendations by coroners which highlight processes that should be implemented to improve the safety of people with dysphagia.

Examining the Content and Outcomes of Training in Dysphagia and Mealtime Management: A Systematic Review Informing Co-Design of New Training.

PURPOSE: Dysphagia (swallowing difficulty) impacts physical health, quality of life, and mealtime enjoyment. Staff who provide mealtime assistance to people with dysphagia require adequate training to help ensure that the mealtimes are safe and enjoyable. This systematic review examined literature relating to training in dysphagia (e.g., recognizing signs and symptoms) and mealtime assistance, its components, and benefits for people with dysphagia. METHOD: In July 2020, five scientific databases were searched for papers meeting the inclusion criteria relating to mealtime assistance training. The quality of the studies was evaluated using the Quality Assessment Tool for Studies of Diverse Design, with scores ranging from 38.1% to 83.3%. We completed a qualitative synthesis using the data extracted from the included studies. RESULTS: Twenty-four studies met the inclusion criteria. Participants in these studies benefited from both group training and one-on-one training. Training programs had many formats including computer-based, face-to-face, individual training, and group training. Each included study demonstrated some level of positive impact to the learners, such as improved knowledge and skills in mealtime management for people with dysphagia. No studies reported negative outcomes. Training duration ranged from 30 min to 5 days. CONCLUSIONS: The benefits of different components of mealtime training (e.g., group training, or face-to-face training) for mealtime assistance for people with dysphagia were reviewed. Further research is needed to compare the effectiveness of different training formats, involving not only the assistant but also people with dysphagia as both trainers and trainees, and determine the health outcomes of training programs for people with dysphagia.

Managing communication changes in persons with multiple sclerosis: Findings from qualitative focus groups.

BACKGROUND: There is growing recognition that communication can be affected in multiple sclerosis (MS) and can negatively impact relationships, employment and psychological well-being. Some persons with MS (PwMS) implement strategies to facilitate their communication; however, some do not. Most PwMS who report communication changes do not engage with speech-language pathology (SLP) services. This raises concerns that a large portion of communication changes associated with MS go under-recognized and unmanaged. Little is known about what PwMS want and need to facilitate effective communication. AIM: To explore what PwMS want and need to better manage their communication changes. METHODS & PROCEDURES: Three focus groups were conducted online using Zoom, with a total of 12 PwMS. Participants were an opportunistic sample of PwMS within Australia recruited via advertisements distributed to various MS organizations and clinics. Data were transcribed verbatim and analysed using thematic content analysis to provide a qualitative analysis of the data. OUTCOMES & RESULTS: Two main themes emerged: (1) accessible knowledge and a holistic approach; and (2) partnerships. Specifically, the identified wants and needs of participants included: (1) assessment; (2) information; (3) raising awareness; (4) support groups; (5) a whole-person approach to intervention; (6) geographically and economically accessible and navigable services; (7) effective patient-physician interactions; and (8) a multidisciplinary team-based approach (e.g., SLP, psychology, neuropsychology, occupational therapy). CONCLUSIONS & IMPLICATIONS: This study identified a wide range of unmet wants and needs of PwMS related to communication changes. Participants wanted improved collaborative partnerships with healthcare professionals to better manage their communication changes. For example, healthcare professionals could ask PwMS about potential communication changes, provide education and make appropriate referrals. Education and information provision could focus on communication changes in MS, factors that trigger or exacerbate communication changes, impacts, self-management strategies, and available supports and services. Specific implications for clinical practice and future research are suggested in this paper, including ideas for patient education materials and content, suggestions for communication-specific screening and information that could be shared in patient-physician interactions, the development of guidelines to systematically screen, assess, manage and monitor communication changes in MS, and the design of evidence-based communication interventions for this clinical population. The results from this study can be used to guide the design of supports and services to help PwMS better manage communication changes, with the aim to reduce the negative impacts. WHAT THIS PAPER ADDS: What is already known on this subject PwMS can experience communication changes across a range of domains, including speech, voice, fluency, expressive and receptive language, and cognitive-linguistic functions. These changes can have profound and far-reaching negative impacts on educational and vocational outcomes, social participation, relationships, psychological well-being, and quality of life. Most PwMS who report communication changes do not engage with SLP services. There has been little research exploring what PwMS want and need to help manage their communication changes. What this paper adds to the existing knowledge This research is the first study of its kind that sets out specifically to explore what PwMS want and need to better manage their communication changes. This study increases our understanding of, and provides valuable insights into, the specific types of supports and services PwMS desire to access, and the partnerships and kinds of interactions PwMS dream of having with healthcare professionals to manage these changes. This information can facilitate the development of future interventions to manage communication changes in MS. What are the potential or actual clinical implications of this work? PwMS wanted healthcare professionals to ask about potential communication changes, provide education and make appropriate referrals. When providing education and information on communication changes in MS, healthcare professionals should focus on covering symptoms, triggers, impacts, self-management strategies, and available supports and services. There is a timely need to develop guidelines and interventions to manage communication changes in MS to reduce their negative impacts.

"I always walked out with an empty purse." Older adults' engagement with electronic gambling machines in Victoria, Australia.

ISSUE ADDRESSED: Older adults are at an increased risk of experiencing gambling harm, which may be due to their use of high-intensity gambling products such as electronic gambling machines (EGMs). However, little research has explored the motivations behind older adults' engagement with EGMs, their understanding of the structural characteristics of EGMs, or their perceptions of risk associated with EGM gambling. This paper aims to address this gap in the literature. METHODS: Focus groups were conducted in Melbourne, Australia with n = 126 adults aged 55+, who had attended a club or pub in the last 12 months. Topics included EGM attitudes and behaviours, structural characteristics of EGMs, and the potential risks associated with EGM gambling. Thematic analysis was used to interpret the data. RESULTS: For most participants, EGM gambling was secondary to their participation in other activities available within venues. Participants identified structural characteristics of EGMs; however, there were some misconceptions about how EGMs operated, including how or why machines paid out. Most participants perceived that they were not at risk of gambling harm because they engaged in "responsible" gambling practices such as setting limits. CONCLUSIONS: Older adults often engaged in EGM gambling because of its availability in community-based venues. Older adults' perception that they are implementing responsible gambling practices may be increasing their susceptibility to harm. SO WHAT?: There is a need to reduce the availability and accessibility of EGMs in community settings and develop public education programs that are tailored to the needs of older adults.

Assessing the information quality and usability of My Health Record within a health literacy framework: What's changed since 2016?

BACKGROUND: This study examined the health literacy demands of My Health Record (MyHR) in the context of preparing for a government-announced opt-out system by repeating two studies of health information and usability conducted in 2016. OBJECTIVE: To examine whether Australia's MyHR meets the information and usability needs of people at risk of low health literacy and changes since 2016. METHOD: Content analysis: Informed by the 2016 methods and findings, measures of information quality, themes and target audiences were recorded and reported for each online consumer-facing health information resource. Heuristic evaluation: An evaluation of the MyHR and supporting information website was conducted using a predetermined checklist of usability criteria. A list of usability violations for both websites was identified. RESULTS: Total number of resources grew from 80 in 2016 to 233 in 2018. There was little change since 2016 to average readability levels, target audiences, presentation style, links between resources and usability of MyHR. Compared to 2016, this study demonstrated increases in resources from non-government organisations; video resources; translated resources; and resources with themes of privacy, security and post-registration use. CONCLUSION: This study identified some improvements in information quality since 2016, but gaps remain in information quality and usability which may negatively impact the ability for people with low health literacy to access and use MyHR. IMPLICATIONS: This study provides a framework for ongoing monitoring and evaluation of the suitability of MyHR for people at risk of low health literacy.

Communication access in the retail environment for people with complex communication needs.

PURPOSE: To identify what facilitates retail communication access for people with complex communication needs, and the impact of communication in this context on social inclusion. MATERIALS AND METHOD: Seven adults with lifelong or acquired complex communication needs who used augmentative and alternative communication devices (AAC) and nine retailers participated in interviews to determine factors that contributed to communication access and inclusion. Interview data were analysed using the grounded theory method within an ecological model of social inclusion. RESULTS: Retail participants did not differentiate between disabilities and their lack of understanding of complex communication needs was a barrier to inclusion. Participants with complex communication needs had received little preparation from speech-language pathologists on how to use AAC effectively when shopping. Communication access was achieved predominantly through participants' individual self-advocacy. CONCLUSIONS: Organisational and systemic measures are needed to better inform retailers about their responsibilities toward people who use AAC. Business prioritisation of communication access, government programs that differentiate and support people with lesser-known disabilities such as complex communication needs, and speech-language pathology support to use AAC in the retail environment is likely to improve communication access and social inclusion.Implications for rehabilitationThere is an urgent need to consider.Social policy that differentiates people with complex communication needs and contributes to public awareness of their communication needs.Directly-delivered training for retailers on adjustments for communication access for people with CCN.Support from local disability advocates, speech-language pathologists and disability services for self-advocacy with retailers by people with CCN.Early training aimed at all stakeholders by speech-language therapists in the use of speech generating devices when retail shopping.

Health Information and the Quality and Safety of Care for People With Disability: An Analysis of Australian Reports of Reviewable Deaths in Residential Care.

OBJECTIVE: Many Australians with disability live in residential care and require assistance to manage their health information across hybrid care settings encompassing residential care, primary and tertiary care, and allied health. In this study, we examined case study reports on people with disability living in residential care in New South Wales, Australia to (a) identify threats to the quality of care and safety for this vulnerable patient group in relation to health documentation and information infrastructure and (b) evaluate the applicability of a conceptual health information infrastructure model. METHODS: All 99 case studies were extracted from eight New South Wales Ombudsmen reports of reviewable deaths for a directed content analysis applying a conceptual model of health information infrastructure in residential care. RESULTS: Ninety-one percent of case studies (n = 90) contained information relation to documentation. Forty-seven percent of case studies (n = 47) linked failures in documentation to risk of death, and 12% (n = 12) described best practice use of documentation. Threats to quality of care and safety related to poor "coordination" of information, including information not being implemented, poor "communication" across services, and discrepancies between "policy and practice" in health management. CONCLUSIONS: The conceptual model demonstrated how "coordination" and "communication" of health information relate to tensions between "policy and practice," influencing the safety and quality of care for people with disability in residential care. The model was a good fit to investigate how health information infrastructure may affect the quality of residential care and could inform holistic digital solutions to deliver safer, integrated, and higher quality care for people with disability.

Weighing up the risks and benefits of community gambling venues as recreational spaces for people with lifelong disability.

BACKGROUND: Community gambling venues (pubs and clubs) are commonly associated with leisure and recreational options in Australian communities. While these venues offer a range of activities and facilities, including social opportunities, sporting facilities, live entertainment, they also contain gambling products that are known to cause significant harm to individuals, their families and communities. Although researchers have explored how adults and children engage with these venues, there is limited understanding about the potential risks and benefits of these venues for people with lifelong disability. METHODS: Semi structured interviews were conducted with nineteen people aged 20-70 years with lifelong disability (includes in this context intellectual disability, autism spectrum disorder, ADHD, and learning disability), predominately intellectual disability. The interviews occurred in a large Australian city and explored interviewees' experiences and attitudes towards pubs and clubs. Using a range of visual prompts (if needed), participants were asked to describe their engagement in different activities offered within the venue. Interviews were audio-recorded and transcribed, with a thematic analysis used to identify themes across the group. RESULTS: Most participants attended venues with family, friends, and supporters, with a few attending on their own. Participants described socialising in the venue, going for reduced price meals, and attended for a range of activities including recreational activities, live entertainment and sport. Some participants also valued being a member of venues, and the interactions with staff members. While participants were cautious about the consumption of alcohol, most had gambled, particularly on electronic gambling machines (EGMs, pokies, or slots). Some participants stated that they had experienced problems with gambling. CONCLUSIONS: While many people with lifelong disability have positive experiences in pubs and clubs, some are vulnerable to the harms associated with risky products such as gambling within the venue. While it is important to acknowledge the positives associated with recreational facilities and encourage engagement in leisure activities for people with lifelong disability, further consideration is needed to ensure people are informed and protected from the harms associated with gambling and other products that are provided within these spaces.

How Do People With Intellectual Disability Engage With and Understand Gambling? A Qualitative Study of Adults in Victoria, Australia.

Objective: This study aimed to understand the factors that may influence how and why people with intellectual disability may engage in gambling. Method: Nineteen people with intellectual disability were recruited from a disability advocacy organization and participated in face to face, semi-structured qualitative interviews. Open ended questions were used to explore participants' gambling participation, recall of, and attitudes toward, different gambling products, understanding of gambling harm, and awareness of responsible gambling messages. Results: All participants could remember gambling in their lifetime and some participants had recently engaged in gambling. Many participants were aware of different gambling products, and a few participants could describe in detail the technical aspects of electronic gambling machines. Most participants did not specifically recall seeing gambling harm minimization messages, however some described engaging in individual responsibility measures, such as limits and control, as they perceived this reduced the risks of experiencing harm. Conclusions: People with intellectual disability are engaging with gambling products in a similar way to the general community. Therefore, it is important to understand the different pathways that may lead people with intellectual disability to initiate and continue gambling and to ensure that they are aware of and protected from the potential risk. Implications for Public Health: Policy makers and practitioners should seek to understand and implement a range of strategies to reduce and prevent the harms associated with particular gambling products and environments for this population sub-group.

Dying for a Meal: An Integrative Review of Characteristics of Choking Incidents and Recommendations to Prevent Fatal and Nonfatal Choking Across Populations.

Purpose The purpose of this study was to conduct an integrative review of original research, across adult populations relating to fatal or nonfatal choking on food, to understand ways to respond to and prevent choking incidents. Method Four scientific databases (CINAHL, Medline, Web of Science, and EMBASE) were searched for original peer-reviewed research relating to fatal or nonfatal choking on foods. Data were extracted on study characteristics; factors leading up to, events at the time of, and actions taken after the choking incident; and impacts of choking incidents. An integrative review of the findings across studies identified several risk factors and recommendations to reduce the risk of choking. Results In total, 52 studies met the criteria for inclusion in this review, of which 31 were quantitative, 17 were qualitative, and 4 were of a mixed methods design. Studies reported the observations and narratives of bystanders or researchers, or else were large-scale autopsy studies, and included both the general public and people at risk of dysphagia. A range of food types were involved, and several actions were reported in response to food choking. Strategies to reduce the risk of choking were identified in the studies and are presented in 5 main categories. Conclusions Factors leading up to choking incidents extend well beyond the individual to the environment for mealtimes; the provision of appropriate mealtime assistance and oral care; and regular monitoring of general health, oral health, and medications. Bystanders' increased awareness and knowledge of how to respond to choking are vital. The results of this review could be used to inform service policy and training, for individuals at risk of choking, the people who support them, and the general public. Further research is needed to explore choking prevention and airway protection in individuals with dysphagia. Supplemental Material https://doi.org/10.23641/asha.8121131.

A systematic review of falls in hospital for patients with communication disability: Highlighting an invisible population.

BACKGROUND: Patients with communication disability, associated with impairments of speech, language, or voice, have a three-fold increased risk of adverse events in hospital. However, little research yet examines the causal relationship between communication disability and risk for specific adverse events in hospital. OBJECTIVE: To examine the impact of a patient's communication disability on their falls risk in hospital. METHODS: This systematic review examined 61 studies on falls of adult hospital patients with communication disability, and patients at high risk of communication disability, to determine whether or not communication disability increased risk for falls, and the nature of and reasons for any increased risk. RESULTS: In total, 46 of the included studies (75%) reported on participants with communication disability, and the remainder included patients with health conditions placing them at high risk for communication disability. Two thirds of the studies examining falls risk identified communication disability as contributing to falls. Commonly, patients with communication disability were actively excluded from participation; measures of communication or cognition were not reported; and reasons for any increased risk of falls were not discussed. CONCLUSIONS: There is some evidence that communication disability is associated with increased risk of falls. However, the role of communication disability in falls is under-researched, and reasons for the increased risk remain unclear. Practical applications: Including patients with communication disability in falls research is necessary to determine reasons for their increased risk of adverse events in hospital. Their inclusion might be helped by the involvement of speech-language pathologists in falls research teams.

An integrative review of stakeholder views on Advance Care Directives (ACD): Barriers and facilitators to initiation, documentation, storage, and implementation.

OBJECTIVE: To examine the views and experiences of patients and their health care providers on developing advance care planning (ACP) and advance care directives (ACD); and determine barriers and facilitators to ACD development, storage, and use, including implications for people with communication disability. METHOD: An integrative review of 93 studies, analysed according to their content themes. RESULTS: Content themes encapsulated the initiation, documentation, and implementation stages of ACP/ACD. Lack of guidance for initiating and supporting ACP/ACD impedes discussions, and both patients and healthcare providers avoid discussions owing to fear of dying and reluctance to think about end-of-life. CONCLUSIONS: There are several barriers and facilitators to the initiation of ACP discussions, documentation and implementation of ACD, and little research exploring the views of legal professionals on the development, storage, or use of ACP documents. Further research is needed to explore the timing and responsibility of both legal and health professionals in initiating and supporting ACP discussions. PRACTICE IMPLICATIONS: It is important for healthcare providers to raise ACP discussions regularly so that patients have time to make informed advance care decisions. Storage of the document in an electronic health record might facilitate better access to and implementation of patients' end-of-life care decisions.

A content analysis of documentation on communication disability in hospital progress notes: diagnosis, function, and patient safety.

OBJECTIVE: To examine the content, quantity, and quality of multidisciplinary team documentation of 'communication' in hospital progress notes of patients with communication disability, and to explore the relationship of this documentation to patient safety. DESIGN: Retrospective chart review involving a descriptive analysis and a qualitative content analysis of the progress notes. SETTING: Acute medical and rehabilitation wards in two regional hospitals in one health district in Australia. PARTICIPANTS: Eight patients with communication disability who had experienced documented patient safety incidents in hospital. METHODS: In total, 906 progress note entries about communication during 38 hospital admissions were extracted from eight patient's charts; written by staff in 11 different health disciplines. Data were analysed descriptively according to quantity, and qualitatively according to the content. RESULTS: Four content categories of meaning in progress note entries relating to communication were (1) use of communication diagnostic and impairment terms; (2) notes on the patient's communicative function; (3) reports of the topic or content of the patient's communication attempts; and (4) references to third parties communicating for the patient. Communication-related information was often brief, unclear, and/or inaccurate. Descriptions of communicative function and recommended strategies for successful communication were often lacking. CONCLUSION: The suboptimal documentation of patient communication in progress notes may contribute to the higher risk of patient safety incidents for hospital patients with communication disability. Increased accuracy in documenting communication disability and function in progress notes might assist staff in communicating with these patients and improve the quality and safety of their care.

Health Information Infrastructure for People with Intellectual and Developmental Disabilities (I/DD) Living in Supported Accommodation: Communication, Co-Ordination and Integration of Health Information.

People with intellectual and/or developmental disability (I/DD) commonly have complex health care needs, but little is known about how their health information is managed in supported accommodation, and across health services providers. This study aimed to describe the current health information infrastructure (i.e., how data and information are collected, stored, communicated, and used) for people with I/DD living in supported accommodation in Australia. It involved a scoping review and synthesis of research, policies, and health documents relevant in this setting. Iterative database and hand searches were conducted across peer-reviewed articles internationally in English and grey literature in Australia (New South Wales) up to September 2015. Data were extracted from the selected relevant literature and analyzed for content themes. Expert stakeholders were consulted to verify the authors' interpretations of the information and content categories. The included 286 sources (peer-reviewed n = 27; grey literature n = 259) reflect that the health information for people with I/DD in supported accommodation is poorly communicated, coordinated and integrated across isolated systems. 'Work-as-imagined' as outlined in policies, does not align with 'work-as-done' in reality. This gap threatens the quality of care and safety of people with I/DD in these settings. The effectiveness of the health information infrastructure and services for people with I/DD can be improved by integrating the information sources and placing people with I/DD and their supporters at the centre of the information exchange process.

Using Twitter to access the human right of communication for people who use Augmentative and Alternative Communication (AAC).

PURPOSE: Articles 19, 26 and 27 of the Universal Declaration of Human Rights and Articles 4, 9 and 21 of the Convention on the Rights of Persons with Disabilities promote the human rights of communication, education, use of technology and access to information. Social media is an important form of online communication, and Twitter increases users' visibility, influence and reach online. The aim of this sociotechnical research was to determine the impact of teaching three people who use Augmentative and Alternative Communication (AAC) to use Twitter. METHOD: Three participants were trained in ways of using Twitter strategically. Data collected from participants' Twitter profiles were examined to determine the impact of training on Twitter follower count, frequency of tweeting, tweet content and the development of social networks. Data were also examined using (1) KH Coder software analysis and visualisation of co-occurring networks in the text data, based on word frequencies; and (2) Gephi software analysis to show the Twitter network for each participant. RESULT: Two participants showed an improvement in Twitter skills and strategies. CONCLUSIONS: Twitter can be used to improve social connectedness of people who use AAC, and should not be overlooked in relation to communication rights.