A Core Outcome Set for Research Evaluating Interventions to Enable Communication in Patients With an Artificial Airway: An International Delphi Consensus Study (Comm-COS).

OBJECTIVES: Critically ill adults requiring artificial airways experience profound communication deficits. Studies of interventions supporting communication report disparate outcomes, creating subsequent challenges in the interpretation of their effectiveness. Therefore, we aimed to develop international consensus for a communication core outcome set (Comm-COS) for future trials of communication interventions in this population. DESIGN: 1) Systematic review, 2) patient/family interviews, 3) two-round modified Delphi, and 4) virtual consensus meetings with a final voting round. A multidisciplinary expert steering committee oversaw all stages. SETTING: Interviews and consensus meetings were conducted via videoconferencing. Digital methods were used for Delphi and final Comm-COS voting. SUBJECTS: Three stakeholder groups: 1) patient and family members with lived experience within 3 years, 2) clinicians with experience working in critical care, and 3) researchers publishing in the field. INTERVENTION: None. MEASUREMENTS AND MAIN RESULTS: We identified 59 outcomes via our systematic review, 3 unique outcomes from qualitative interviews, and 2 outcomes from our steering committee. Following item reduction, 32 outcomes were presented in Delphi round 1; 134 participants voted; 15 patient/family (11%), 91 clinicians (68%), and 28 researchers (21%). Nine additional outcomes were generated and added to round 2; 106 (81%) participants voted. Following completion of the consensus processes, the Comm-COS includes seven outcomes: 1) changes in emotions and wellbeing associated with ability to communicate, 2) physical impact of communication aid use, 3) time to functional communication, 4) ability to communicate healthcare needs (comfort/care/safety/decisions), 5) conversation agency, 6) ability to establish a communication connection to develop and maintain relationships, and 7) acceptability of the communication intervention. CONCLUSIONS: This is the first COS to specifically focus on communication for critically ill adults. Limitations for operationalization include selection of measures to use with these outcomes. Identification of suitable measures and adoption of the Comm-COS in future trials will help establish effective interventions to ameliorate the highly prevalent and negative experience of communicative incapacity.

'I only eat because I have to-to live': The impacts of dysphagia on quality of life from the perspectives of people with dysphagia, supporters of people with dysphagia and allied health professionals.

BACKGROUND: A recent literature review identified that past research has described the impacts of dysphagia on quality of life; but there is limited research on these impacts from the perspective of people with dysphagia, their supporters and allied health professionals. Recent qualitative research has provided details about these perspectives, but researchers have also called for verification of these findings with a larger group of participants. AIMS: To expand upon the findings of the prior qualitative research on the views of people with dysphagia, supporters of people with dysphagia, and allied health professionals on the impacts of dysphagia and texture-modified food on quality of life. METHODS & PROCEDURES: An online survey of adults with dysphagia (n = 30), supporters of people with dysphagia (n = 4) and allied health professionals (n = 18) was conducted between November 2021 and February 2022. Categorical questions were analysed descriptively and open-ended questions were analysed for content categories of meaning. OUTCOMES & RESULTS: Participants with dysphagia reported that dysphagia and texture-modified foods had a greater impact on their physical health than on their choice and control or social engagement. Supporters and allied health professionals viewed that dysphagia impacted the physical health and their choice and control of people with dysphagia. Across groups, participants considered that mealtime enjoyment, participation, and inclusion were influenced by the control the person had over their meals, the accessibility of the mealtime environment, and the attitudes of others. CONCLUSIONS & IMPLICATIONS: Dysphagia and its interventions negatively impact quality of life for people with dysphagia. People with dysphagia were the most affected by the physical impacts of dysphagia. Their perspectives contrasted with those of supporters and allied health professionals in some domains, highlighting the need for people with dysphagia to be included in research. Future research exploring how these perspectives are integrated into person-centred dysphagia management is warranted. WHAT THIS PAPER ADDS: What is already known on the subject Recent qualitative research has provided insights into the impacts of dysphagia on quality of life from the perspective of people with dysphagia, supporters of people with dysphagia, and allied health professionals. However, the small scale of these studies means that further research is needed with a larger group of people with dysphagia, supporters of people with dysphagia, and allied health professionals. What this paper adds to existing knowledge This paper verifies and extends upon the findings of prior qualitive research on the views of people with dysphagia, supporters of people with dysphagia, and allied health professionals on the impacts of dysphagia and its interventions on quality of life, participation, and inclusion. What are the potential or actual clinical implications of this work? This research shows the importance of supporters of people with dysphagia and allied health professionals discussing mealtime quality of life with the person with dysphagia so that their perspectives are considered in the mealtime decision-making process. Furthermore, people with dysphagia should be able to specify strategies they want to trial to enhance their mealtime participation and inclusion.

The true cost of dysphagia on quality of life: The views of adults with swallowing disability.

BACKGROUND: Dysphagia impacts negatively on quality of life, however there is little in-depth qualitative research on these impacts from the perspective of people with dysphagia. AIMS: To examine the lived experiences and views of people with lifelong or ongoing dysphagia on the impacts of dysphagia and its interventions on quality of life, and barriers and facilitators to improved quality of life related to mealtimes. METHODS & PROCEDURES: Nine adults with lifelong or acquired chronic dysphagia engaged in in-depth interviews and a mealtime observation. The observations were recorded and scored using the Dysphagia Disorders Survey (DDS). Interviews were recorded, transcribed and de-identified before content thematic and narrative analysis, and verification of researcher interpretations. OUTCOMES & RESULTS: Participants presented with mild to severe dysphagia as assessed by the DDS. They viewed that dysphagia and its interventions reduced their quality of life and that they had 'paid a high price' in terms of having reduced physical safety, reduced choice and control, poor mealtime experiences, and poor social engagement. As part of their management of dysphagia, participants identified several barriers to and facilitators for improved quality of life including: being involved in the design of their meals, being adaptable, having ownership of swallowing difficulties, managing the perceptions of others and resisting changes to oral intake. CONCLUSIONS & IMPLICATIONS: This research improves understanding of the primary concerns of people with dysphagia about their mealtime experiences and factors impacting on their quality of life. Clinicians working with people with dysphagia need to consider how self-determination, autonomy and freedom of choice could be improved through involvement in food design of texture-modified foods. It is important that future research considers the views of health professionals on how these findings could impact on policy and practice particularly in ways to address the barriers and enhance facilitators to improved quality of life for people with dysphagia. WHAT THIS PAPER ADDS: What is already known on the subject Dysphagia impacts on quality of life, particularly as the severity of the dysphagia increases. Research to date has focused on people with dysphagia associated with an acquired health condition and has used quantitative assessment methods to measure quality of life. What this paper adds to existing knowledge This study provides a qualitative examination of the impacts of dysphagia on quality of life from the perspective of people with lifelong or ongoing acquired dysphagia and their supporters. This study also provides qualitative insights into the barriers and facilitators of mealtime-related quality of life. What are the potential or actual clinical implications of this work? Health professionals should engage in open communication with their clients with dysphagia regarding the impacts of dysphagia on their lifestyle and quality of life. By considering these impacts, health professionals may be able to recommend interventions that are more acceptable to the person with the dysphagia which may have a positive impact on their mealtime experience.

'Patient unable to express why he was on the floor, he has aphasia.' A content thematic analysis of medical records and incident reports on the falls of hospital patients with communication disability following stroke.

BACKGROUND: People with communication disability following stroke are at risk of falls during inpatient rehabilitation. However, they are often excluded from hospital falls research, and little is known about the circumstances or outcomes of their falls to inform risk management strategies. AIMS: To examine hospital medical records and incident reports relating to falls of patients with communication disability following stroke for content codes, categories and themes relating to communication. METHODS & PROCEDURES: This medical record chart review examined data on 72 patients and 265 falls. A content thematic analysis was used to identify how patient communication is characterized in relation to falls, and their prevention and management strategies. OUTCOMES & RESULTS: The data reflected that staff viewed patients having difficulty following simple instructions as contributing to falls. Gaining the attention of staff and communicating basic needs were also considered to be contributing factors for falls. Patients were often described as experiencing a fall when taking a risk or attempting to address an unmet basic need. Furthermore, written notes for patients with more severe communication disability reflected that the patient's communication impairments prevented staff from establishing the circumstances of some falls and complicated the assessment for injury following a fall. CONCLUSIONS & IMPLICATIONS: The medical records and incident reports of patients with communication disability following stroke reveal that hospital staff recognize the impact of communication disability as potential risk factors for falls for this group. It was difficult for staff to report the circumstances of the fall for patients with severe communication disability. Despite the recognition of communication as a potential contributing factor, few medical record entries documented strategies related to communication interventions to improve patients' ability to understand instructions, gain attention or communicate basic needs. WHAT THIS PAPER ADDS: What is already known on the subject People with stroke are at a high risk of falls during their hospital admission. However, little is known about the circumstances of their falls and the influence of communication disability on these falls. What this paper adds to existing knowledge Patients with communication disability have unique factors that contribute to their falls in the hospital. Patients were described as experiencing a fall when taking a risk or attempting to address an unmet need, and these falls were often related to a patient's difficulties communicating their basic needs, gaining attention from staff, and following simple instructions. What are the potential or actual clinical implications of this work? Communication disability as a risk factor for a fall, and fall prevention strategies tailored to the communication disability, were typically identified and documented by physiotherapists, occupational therapists and nursing staff. The inclusion of speech pathologists in fall risk assessment, management, and prevention strategies may provide crucial information regarding the patient's communication disability that may enhance their fall prevention plan.

Mealtime difficulties in adults with mental health conditions: an integrative review.

BACKGROUND: Dysphagia and choking are highly prevalent in adults with mental health conditions. However, there is scant research considering the personal experience of dysphagia for this population. AIMS: To understand the evidence-base for strategies to involve the patient in recognition, assessment and treatment of mealtime difficulties. METHODS: This integrative review synthesised the literature on the experience of dysphagia in patients with mental health conditions. Patient consultation led to co-designed search terms and eligibility criteria for a systematic search of five scientific databases following Prisma guidance. Quality assessment of the eligible studies and reflexive thematic analysis were completed. RESULTS: 31 studies were included for review. These included case reports, literature reviews and cross-sectional studies. Quality of evidence was weak and no intervention studies were identified. There was scant detail regarding the personal experience of dysphagia or choking. Themes identified related to biomedical perspectives, influencing factors presented without context, and decision-making led by clinicians. CONCLUSIONS: Guidance on mental healthcare calls attention to under-diagnosis of physical co-morbidities and advocates patient inclusion. However, the patient voice in this population is rarely described regarding dysphagia. Further inclusive research is indicated to explore the impact of dysphagia and choking, and implications for interventions and outcome measures.

Communication functions of adult patients admitted to intensive care: A multicentre, binational point prevalence study.

BACKGROUND: Patient communication is profoundly impacted during the intensive care unit (ICU) stay. While the impacts of altered communication are recognised, there is a paucity of data on the prevalence of communication attempts as well as modes utilised by patients and unit practices to manage communication function. OBJECTIVE: The objectives of this study were to describe the prevalence and characteristics of observed communication attempts (nonverbal, verbal, and use of the staff call bell) in adult ICU patients and report on unit-level practices on communication management. METHODS: A prospective, binational, cross-sectional point-prevalence study was conducted across 44 Australia and New Zealand adult ICUs. Data on communication attempts, modes, ICU-level guidelines, training, and resources were collected in June 2019. RESULTS: Across 44 ICUs, 470 of 623 (75%) participants, including ventilated and nonventilated patients, were attempting to communicate on the study day. Of those invasively ventilated via an endotracheal tube for the entire study day, 42 of 172 (24%) were attempting to communicate and 39 of 45 (87%) patients with a tracheostomy were attempting to communicate. Across the cohort, the primary mode of communication was verbal communication, with 395 of 470 (84%) patients using speech; of those 371 of 395 (94%) spoke English and 24 of 395 (6%) spoke a language other than English. Participants attempting to communicate on the study day had a shorter length of stay (LOS), a mean difference of 3.8 days (95% confidence interval: 0.2; 5.1) shorter LOS in the ICU than those not attempting to communicate, and a mean difference 7.9 days (95% confidence interval: 3.1; 12.6) shorter LOS in hospital overall. Unit-level practices and supports were collected. Six of 44 (14%) ICUs had a protocol for communication management, training was available in 11 of 44 (25%) ICUs, and communication resources were available in 37 of 44 (84%) ICUs. CONCLUSION: Three-quarters of patients admitted to the ICU were attempting to communicate on the study day, with multiple methods used to support verbal and nonverbal communication regardless of ventilation status. Guidance and training were absent from the majority of ICUs, indicating a need for development and implementation of policies, training, and resources.

Dysphagia in adult intensive care patients: Results of a prospective, multicentre binational point prevalence study.

BACKGROUND: Dysphagia occurs in intensive care unit (ICU) patients. However, there is a lack of epidemiological data on the prevalence of dysphagia in adult ICU patients. OBJECTIVES: The objective of this study was to describe the prevalence of dysphagia in nonintubated adult patients in the ICU. METHODS: A prospective, multicentre, binational, cross-sectional point prevalence study was conducted in 44 adult ICUs in Australia and New Zealand. Data were collected in June 2019 on documentation of dysphagia, oral intake, and ICU guidelines and training. Descriptive statistics were used to report demographic, admission, and swallowing data. Continuous variables are reported as means and standard deviations (SDs). Precisions of estimates were reported as 95% confidence intervals (CIs). RESULTS: Of the 451 eligible participants, 36 (7.9%) were documented as having dysphagia on the study day. In the dysphagia cohort, the mean age was 60.3 years (SD: 16.37) vs 59.6 years (SD: 17.1) and almost two-thirds were female (61.1% vs 40.1%). The most common admission source for those patients with dysphagia were from the emergency department (14/36, 38.9%), and seven of 36 (19.4%) had a primary diagnosis of trauma (odds ratio: 3.10, 95% CI 1.25 - 7.66). There were no statistical differences in Acute Physiology and Chronic Health Evaluation (APACHE II) scores between those with and without a dysphagia diagnosis. Patients with dysphagia were more likely to have a lower mean body weight of 73.3 kg vs 82.1 kg than patients not documented as having dysphagia (95% CI of mean difference: 0.43 to 17.07) and require respiratory support (odds ratio: 2.12, 95% 1.06 to 4.25). The majority of patients with dysphagia were prescribed modified food and fluids in the ICU. Less than half of ICUs surveyed reported unit-level guidelines, resources, or training for management of dysphagia. CONCLUSIONS: The prevalence of documented dysphagia in adult ICU nonintubated patients was 7.9%. There were a higher proportion of females with dysphagia than previously reported. Approximately two-thirds of patients with dysphagia were prescribed oral intake, and the majority were receiving texture-modified food and fluids. Dysphagia management protocols, resources, and training are lacking across Australian and New Zealand ICUs.

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.

Making Public Involvement in Research More Inclusive of People With Complex Speech and Motor Disorders: The I-ASC Project.

In this study, we aimed to identify processes that enabled the involvement of a person with complex speech and motor disorders and the parent of a young person with these disorders as co-researchers in a U.K. research project. Semi-structured individual and focus group interviews explored participants' experiences and perceptions of public involvement (PI). Sixteen participants were recruited, with representation from (a) the interdisciplinary project team; (b) academics engaged in discrete project activities; (c) individuals providing organizational and operational project support; and (d) the project's two advisory groups. Data were analyzed using Framework Analysis. Five themes were generated: (a) the challenge of defining the co-researcher role; (b) power relations in PI; (c) resources used to enable PI; (d) perceived benefits of PI; and (e) facilitators of successful PI. Our findings provide new evidence about how inclusive research teams can support people with complex speech and motor disorders to contribute meaningfully to co-produced research.

Falls in hospital patients with acquired communication disability secondary to stroke: A systematic review and meta-analysis.

BACKGROUND: Falls are a common safety incident in people with stroke. Studies report that between 14% and 65% of people with stroke fall at least once during their hospital admission. Risk factors for falls in people with stroke have been reported to include neglect, balance and dependence for activities of daily living. Communication disability has been identified as a risk factor for patient safety incidents in hospital that has not been closely examined as a potential risk factor for falls in people with stroke. AIM: To determine the association between communication disability secondary to stroke and falls in people with stroke in hospital. METHODS & PROCEDURES: Systematic searches of five electronic databases were conducted in June 2019 using the key concepts of 'falls' and 'stroke' (PROSPERO CRD 42019137199). Included studies provided comparative data of falls in patients with stroke with and without communication disability. The methodological quality of the studies was examined using the Quality Assessment Tool for Studies with Diverse Designs (QATSDD). Both a narrative synthesis and a meta-analysis were completed. MAIN CONTRIBUTION: A total of 15 studies met the criteria for inclusion and 11 were included in a meta-analysis. Three studies found people with communication disability had an increased rate of falls in hospital. However, a meta-analysis showed no significant association between a non-specific classification of communication disability and an increased risk of falls. There was some indication from individual studies that higher risk of falls may be associated with severe communication disability, but there were insufficient data reported on the severity of the communication disability to draw robust conclusions. CONCLUSION & IMPLICATIONS: The results of this systematic review suggest that a generic classification of communication disability following stroke is not a risk factor for falls. However, further research that is inclusive of this population and considers severity of communication disability more specifically is required. What this paper adds What is already known on the subject The association between communication disability following stroke and falls in hospital is unclear. The literature reports mixed results regarding the impact of a communication disability following stroke on falls risk or rates of falls during hospital admission. What this paper adds to existing knowledge This review is the first to bring together this diverse literature to examine the association between communication disability following stroke and falls in hospital. The results suggest that a generic classification of communication disability following stroke is not a risk factor for falls. What are the potential or actual clinical implications of this work? There is a possibility that moderate to severe communication disability may be related to falls in patients in hospital. Further research is indicated to be more inclusive of people with communication disability, including those with severe communication disability.

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.

'I kind of figured it out': the views and experiences of people with traumatic brain injury (TBI) in using social media-self-determination for participation and inclusion online.

BACKGROUND: Social media can support people with communication disability to access information, social participation and support. However, little is known about the experiences of people with traumatic brain injury (TBI) who use social media to determine their needs in relation to social media use. AIMS: To determine the views and experiences of adults with TBI and cognitive-communication disability on using social media, specifically: (1) the nature of their social media experience; (2) barriers and facilitators to successful use; and (3) strategies that enabled their use of social media. METHODS & PROCEDURES: Thirteen adults (seven men, six women) with TBI and cognitive-communication disability were interviewed about their social media experiences, and a content thematic analysis was conducted. OUTCOMES & RESULTS: Participants used several social media platforms including Facebook, Twitter, Instagram and virtual gaming worlds. All but one participant used social media several times each day and all used social media for social connection. Five major themes emerged from the data: (1) getting started in social media for participation and inclusion; (2) drivers to continued use of social media; (3) manner of using social media; (4) navigating social media; and (5) an evolving sense of social media mastery. In using platforms in a variety of ways, some participants developed an evolving sense of social media mastery. Participants applied caution in using social media, tended to learn through a process of trial and error, and lacked structured supports from family, friends or health professionals. They also reported several challenges that influenced their ability to use social media, but found support from peers in using the social media platforms. This information could be used to inform interventions supporting the use of social media for people with TBI and directions for future research. CONCLUSIONS & IMPLICATIONS: Social media offers adults with TBI several opportunities to communicate and for some to develop and strengthen social relationships. However, some adults with TBI also reported the need for more information about how to use social media. Their stories suggested a need to develop a sense of purpose in relation to using social media, and ultimately more routine and purposeful use to develop a sense of social media mastery. Further research is needed to examine the social media data and networks of people with TBI, to verify and expand upon the reported findings, and to inform roles that family, friends and health professionals may play in supporting rehabilitation goals for people with TBI.

Hashtag #TBI: A content and network data analysis of tweets about Traumatic Brain Injury.

OBJECTIVE: The aims of this study were to: (a) determine how Twitter is used by people with traumatic brain injury (TBI) and TBI organisations, (b) analyse the Twitter networks and content of tweets tagged with TBI-related hashtags, and (c) identify any challenges people with TBI encounter in using Twitter. RESEARCH DESIGN: Mixed methods in a Twitter hashtag study. METHODS: Mixed methods in a Twitter hashtag study. Tweets tagged with TBI-related hashtags were harvested from the Twitter website over a one-month period in 2016 and analysed qualitatively and quantitatively. RESULTS: The sample of 29,199 tweets included tweets sent by 893 @users, 219 of whom had a brain injury. Twitter was used to: (a) discuss health issues, (b) raise awareness of TBI, (c) talk about life after TBI, (d) talk about sport and concussion, and (e) communicate inspirational messages. CONCLUSIONS: Twitter is an important platform for research and knowledge translation on TBI, and for hearing the voices of people with TBI as they express their personal views and stories of living with TBI and become more visible and influential in Twitter communities. TBI clinicians could use these narratives of people with TBI in Twitter to develop more effective and personally meaningful rehabilitation goals.

Legal and Ethical Issues Surrounding the Use of Older Children's Electronic Personal Health Records.

This article explores the legal and ethical issues surrounding the production, storage, retrieval and use of electronic personal health records of children aged 14 years and over. Specifically, we explore: (1) the capacity, consent and competence issues; (2) privacy and confidentiality concerns; (3) the tension between a child's right to autonomy and his or her parent's or guardian's rights and responsibilities; and (4) outline implications of this for the implementation of Australia's My Health Record system, particularly for children with communication disability who are high users of health systems and have high health information exchange needs.

Technology and its role in rehabilitation for people with cognitive-communication disability following a traumatic brain injury (TBI).

PURPOSE: To review the literature on communication technologies in rehabilitation for people with a traumatic brain injury (TBI), and: (a) determine its application to cognitive-communicative rehabilitation, and b) develop a model to guide communication technology use with people after TBI. METHOD: This integrative literature review of communication technology in TBI rehabilitation and cognitive-communication involved searching nine scientific databases and included 95 studies. RESULTS: Three major types of communication technologies (assistive technology, augmentative and alternative communication technology, and information communication technology) and multiple factors relating to use of technology by or with people after TBI were categorized according to: (i) individual needs, motivations and goals; (ii) individual impairments, activities, participation and environmental factors; and (iii) technologies. While there is substantial research relating to communication technologies and cognitive rehabilitation after TBI, little relates specifically to cognitive-communication rehabilitation. CONCLUSIONS: Further investigation is needed into the experiences and views of people with TBI who use communication technologies, to provide the 'user' perspective and influence user-centred design. Research is necessary to investigate the training interventions that address factors fundamental for success, and any impact on communication. The proposed model provides an evidence-based framework for incorporating technology into speech pathology clinical practice and research.

Legal and Ethical Issues Surrounding Advance Care Directives in Australia: Implications for the Advance Care Planning Document in the Australian My Health Record.

This article reviews legal and scientific literature relating to Advance Care Planning (ACP) and Advance Care Directives (ACDs) in Australia, for information about (a) opportunities or benefits of ACP and ACDs and (b) risks, barriers or difficulties in relation to ACP and ACDs. These are discussed in relation to

A call for innovative social media research in the field of augmentative and alternative communication.

Augmentative and alternative communication (AAC) social media research is relatively new, and is built on a foundation of research on use of the Internet and social media by people with communication disabilities. Although the field is expanding to include a range of people who use AAC, there are limitations and gaps in research that will need to be addressed in order to keep pace with the rapid evolution of social media connectivity in assistive communication technologies. In this paper, we consider the aims, scope, and methodologies of AAC social media research, with a focus on social network sites. Lack of detailed attention to specific social network sites and little use of social media data limits the extent to which findings can be confirmed. Increased use of social media data across a range of platforms, including Instagram and YouTube, would provide important insights into the lives of people who use AAC and the ways in which they and their supporters use social media. New directions for AAC social media research are presented in line with those discussed at the social media research symposium at the International Society for Augmentative and Alternative Communication in Toronto, Canada, on August 12, 2016.

Improving nurse-patient communication with patients with communication impairments: hospital nurses' views on the feasibility of using mobile communication technologies.

BACKGROUND: Nurses communicating with patients who are unable to speak often lack access to tools and technologies to support communication. Although mobile communication technologies are ubiquitous, it is not known whether their use to support communication is feasible on a busy hospital ward. PURPOSE: The aim of this study was to determine the views of hospital nurses on the feasibility of using mobile communication technologies to support nurse-patient communication with individuals who have communication impairments. METHOD: This study involved an online survey followed by a focus group, with findings analyzed across the two data sources. FINDINGS: Nurses expected that mobile communication devices could benefit patient care but lacked access to these devices, encountered policies against use, and held concerns over privacy and confidentiality. CONCLUSION: The use of mobile communication technologies with patients who have communication difficulties is feasible and may lead to improvements in communication and care, provided environmental barriers are removed and facilitators enhanced.

Feasibility of implementing oral health guidelines in residential care settings: views of nursing staff and residential care workers.

PURPOSE: To determine the views of nurses and on the feasibility of implementing current evidence-based guidelines for oral care, examining barriers and facilitators to implementation. RESULTS: This mixed-methods study involved an online survey of 35 nurses and residential care workers, verified and expanded upon by one focus group of six residential care workers. Results reflected that nurses and residential care workers (a) have little or no training in recommended oral care techniques, and (b) lack access to the equipment and professional supports needed to provide adequate oral care. Basic oral care might be performed less than once per day in some settings and patients with problematic behaviours, dysphagia, or sensitivities associated with poor oral health might be less likely to receive oral care. While lack of time was highlighted as a barrier in the survey findings, focus group members considered that time should not be a barrier to prioritising oral care practices on a daily basis in residential care settings. CONCLUSION: There are several important discrepancies between the recommendations made in evidence-based guidelines for oral care and the implementation of such practices in residential care settings. Nursing and residential care staff considered adequate oral care to be feasible if access, funding and training barriers are removed and facilitators enhanced.