Digital health autonomy for people with communication or swallowing disability and the Sustainable Development Goal 10 of reducing inequalities and Goal 3 of good health and well-being.

PURPOSE: The purpose of this article is to explore the Sustainable Development Goal of reduced inequalities (SDG 10) in relation to the experiences of people with communication disability with lived experiences and their access to self-determined healthcare. As such, the article also informs the goal of good health and well-being (SDG 3). METHOD: In preparing this article the authors reviewed recent literature on digital health records and digital autonomy as a means to improving equity of access and explored the experiences of two of the authors as people with severe communication disability who use a wide range of digital health technologies in pursuing safe and quality health care. The literature and their experiences highlight a need for improved co-design and usage across disability and health service systems management if e-health records are to be used to reduce inequalities in accessing healthcare. RESULT: Recent research and the lived experiences of the first two authors reflect that e-health information systems, designed to improve the consumer's ability to access and share their own health information, are not used to full advantage in disability and healthcare environments. CONCLUSION: Increased access to multimodal communication strategies and communication technologies, along with user-centred co-design that enables digital health autonomy will further progress towards reduced inequalities (SDG 10) and good health and well-being (SDG 3) and for people with communication or swallowing disability.

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.

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.

A bite closer: Using 3D food printing to achieve Sustainable Development Goals 2, 3, 9 and 17.

PURPOSE: This commentary paper focuses on four Sustainable Development Goals (SDGs): zero hunger (SDG 2), good health and well-being (SDG 3), industry, innovation and infrastructure (SDG 9), and partnerships for the goals (SDG 17). Each bite of food has the potential to impact on nutrition and well-being, particularly for the older adult aged over 65 years with swallowing disability. Better attention to the shape of the foods presented for consumption may help improve access to food and nutrition through food shaping methods such as 3D food printing. Target objectives across these four SDGs should help to improve the physical and emotional health of older people with swallowing disability who need texture-modified foods. RESULT: We discuss the potential for methods to improve food shaping and influence better health outcomes for older people, particularly those with swallowing disability. Texture-modified food should be both nourishing and enjoyable while being safe to swallow without coughing or choking; to improve nutrition, health, and quality of life. CONCLUSION: Along with temperature and taste, the shape of texture-modified foods influences the appeal of the food as important elements of food design. The link between the enjoyment of food and nutrition sets the foundation for a good quality of life for older people. 3D food printing, among other food shaping methods, helps establish this link through the creation of nutritious and appealing foods. Applying the targets for SDGs relating to food shaping techniques will involve innovation and collaboration with older people and multiple disciplines.

Sepsis, critical illness, communication, swallowing and Sustainable Development Goals 3, 4, 10.

PURPOSE: Sepsis is a major global health problem with an estimated 49 million cases globally each year causing as many as 11 million deaths. The primary objective of this commentary is to describe the impacts of sepsis and critical illness on communication and swallowing function, and to discuss management strategies considering the Sustainable Development Goals (SDGs). RESULT: Communication and swallowing disabilities can occur with sepsis and critical illness. A holistic framework to optimise function, recovery, and future research priorities across the lifespan can be developed through the SDGs. CONCLUSION: Communication and swallowing disabilities following critical illness associated with sepsis have global impacts. Early multidisciplinary engagement is key to optimising individuals' function. Collaborative research, education, and public awareness is urgently needed to increase equity in health outcomes across populations. This commentary paper supports progress towards good health and well-being (SDG 3), quality education (SDG 4) and reduced inequalities (SDG 10).

Allied Health Professionals' Views on the Use of 3D Food Printing to Improve the Mealtime Quality of Life for People With Dysphagia: Impact, Cost, Practicality, and Potential.

PURPOSE: Much is promised in relation to the use of three-dimensional (3D) food printing to create visually appealing texture-modified foods for people with dysphagia, but little is known of its feasibility. This study aimed to explore the perspective of allied health professionals on the feasibility of using 3D food printing to improve quality of life for people with dysphagia. METHOD: Fifteen allied health professionals engaged in one of four 2-hr online focus groups to discuss 3D food printing for people with dysphagia. They discussed the need to address the visual appeal of texture-modified foods and watched a video of 3D food printing to inform their discussions on its feasibility. Focus group data were transcribed verbatim, de-identified, and analyzed using thematic content analysis. Participants verified summaries of the researchers' interpretation of the themes in the data. RESULTS: Participants suggested that 3D food printing could improve the mealtime experience for people with dysphagia but noted several barriers to its feasibility, including the time and effort involved in printing the food and in cleaning the printer. They were not convinced that 3D-printed food held higher visual appeal or looked enough like the "real food" it represented. CONCLUSIONS: Allied health professionals considered that 3D food printing could benefit people with dysphagia by reducing the negative impacts of poorly presented texture-modified foods. However, they also considered that feasibility barriers could impede uptake and use of 3D food printers. Further research should consider the views of people with dysphagia and address barriers reported in this study.

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.

The health literacy demands of electronic personal health records (e-PHRs): An integrative review to inform future inclusive research.

OBJECTIVE: To integrate the findings of research on electronic personal health records (e-PHRs) for an understanding of their health literacy demands on both patients and providers. METHODS: We sought peer-reviewed primary research in English addressing the health literacy demands of e-PHRs that are online and allow patients any degree of control or input to the record. A synthesis of three theoretical models was used to frame the analysis of 24 studies. RESULTS: e-PHRs pose a wide range of health literacy demands on both patients and health service providers. Patient participation in e-PHRs relies not only on their level of education and computer literacy, and attitudes to sharing health information, but also upon their executive function, verbal expression, and understanding of spoken and written language. CONCLUSION: The multiple health literacy demands of e-PHRs must be considered when implementing population-wide initiatives for storing and sharing health information using these systems. PRACTICE IMPLICATIONS: The health literacy demands of e-PHRs are high and could potentially exclude many patients unless strategies are adopted to support their use of these systems. Developing strategies for all patients to meet or reduce the high health literacy demands of e-PHRs will be important in population-wide implementation.

The E-health Literacy Demands of Australia's My Health Record: A Heuristic Evaluation of Usability.

Background: My Health Record is Australia's electronic personal health record system, which was introduced in July 2012. As of August 2017, approximately 21 percent of Australia's total population was registered to use My Health Record. Internationally, usability issues have been shown to negatively influence the uptake and use of electronic health record systems, and this scenario may particularly affect people who have low e-health literacy. It is likely that usability issues are negatively affecting the uptake and use of My Health Record in Australia. Objective: To identify potential e-health literacy-related usability issues within My Health Record through a heuristic evaluation method. Methods: Between September 14 and October 12, 2016, three of the authors conducted a heuristic evaluation of the two consumer-facing components of My Health Record-the information website and the electronic health record itself. These two components were evaluated against two sets of heuristics-the Health Literacy Online checklist and the Monkman Heuristics. The Health Literacy Online checklist and Monkman Heuristics are evidence-based checklists of web design elements with a focus on design for audiences with low health literacy. During this heuristic evaluation, the investigators individually navigated through the consumer-facing components of My Health Record, recording instances where the My Health Record did not conform to the checklist criteria. After the individual evaluations were completed, the investigators conferred and aggregated their results. From this process, a list of usability violations was constructed. Results: When evaluated against the Health Literacy Online Checklist, the information website demonstrated violations in 12 of 35 criteria, and the electronic health record demonstrated violations in 16 of 35 criteria. When evaluated against the Monkman Heuristics, the information website demonstrated violations in 7 of 11 criteria, and the electronic health record demonstrated violations in 9 of 11 criteria. The identified violations included usability issues with the reading levels used within My Health Record, the graphic design elements, the layout of web pages, and a lack of images and audiovisual tools to support learning. Other important usability issues included a lack of translated resources, difficulty using accessibility tools, and complexity of the registration processes. Conclusion: My Health Record is an important piece of technology that has the potential to facilitate better communication between consumers and their health providers. However, this heuristic evaluation demonstrated that many usability-related elements of My Health Record cater poorly to users at risk of having low e-health literacy. Usability issues have been identified as an important barrier to use of personal health records internationally, and the findings of this heuristic evaluation demonstrate that usability issues may be substantial barriers to the uptake and use of My Health Record.

Validation of the Choking Risk Assessment and Pneumonia Risk Assessment for adults with Intellectual and Developmental Disability (IDD).

BACKGROUND: Risk assessments are needed to identify adults with intellectual and developmental disability (IDD) at high risk of choking and pneumonia. AIM: To describe the development and validation of the Choking Risk Assessment (CRA) and the Pneumonia Risk Assessment (PRA) for adults with IDD. METHODS: Test items were identified through literature review and focus groups. Five-year retrospective chart reviews identified a positive choking group (PCG), a negative choking group (NCG), a positive pneumonia group (PPG), and a negative pneumonia group (NPG). Participants were tested with the CRA and PRA by clinicians blind to these testing conditions. RESULTS: The CRA and PRA differentiated the PCG (n=93) from the NCG (n=526) and the PPG (n=63) from the NPG (n=209) with high specificity (0.91 and 0.92 respectively) and moderate to average sensitivity (0.53 and 0.62 respectively). Further analyses revealed associations between clinical diagnoses of dysphagia and choking (p=0.043), and pneumonia (p<0.001). CONCLUSIONS: The CRA and PRA are reliable, valid risk indicators for choking and pneumonia in adults with IDD. Precautions for mitigating choking and pneumonia risks can be applied selectively thus avoiding undue impacts on quality of life and unnecessary interventions for low risk individuals.

Supporting communication for children with cerebral palsy in hospital: views of community and hospital staff.

OBJECTIVE: We aimed to investigate the views of allied health and nursing staff on supporting the communication of children with cerebral palsy (CP) and complex communication needs (CCN) in hospital. METHOD: We conducted 12 focus groups with 49 community- and hospital-based allied health professionals and hospital nurses. RESULTS: Participants reported having active roles in supporting children's seating, mobility, equipment, mealtime management and psychosocial needs, but not in supporting the children's communication in hospital. Participants described several environmental barriers to supporting children's augmentative and alternative communication (AAC) in hospital, and suggested a range of strategies to ease communication difficulties at the bedside. CONCLUSION: Results indicate a potential new role for community- and hospital-based health professionals in supporting nurses to implement AAC strategies at the bedside. Supporting nursing staff to remove environmental barriers and use communication technologies might create a more communicatively accessible hospital ward for children with CP and CCN.

Parents and children with cerebral palsy discuss communication needs in hospital.

OBJECTIVE: The aim of this study was to understand the communication needs and experiences of parents and children with cerebral palsy (CP) and complex communication needs (CCN) in hospital. METHODS: Focus groups with 10 parents and interviews with seven children with CP and CCN were analysed for content themes. RESULTS: Results demonstrated that children often want to communicate directly with hospital staff to: gain attention, answer yes/no, convey basic physical needs, give and receive information, control their environment and participate in preferred activities. Barriers to communication included lack of access to augmentative and alternative communication (AAC), staff preferring to communicate with parents and lack of time to communicate. CONCLUSIONS: Results highlight strategies for successful communication, the role of the parents in supporting communication and provision of AAC systems for children in hospital. Policy and practice implications in the preparation of children with CP and CCN for communication in hospital are discussed.

Nursing the patient with developmental disability in hospital: roles of paid carers.

Our aim in this narrative inquiry was to understand the roles of paid carers supporting adults with developmental disability and complex communication needs in hospital, from the perspectives of 15 paid carers, 15 adults with developmental disability, and 15 hospital nurses. Results demonstrated that paid carers have an important role in supporting the adult with disability, providing information, delivering basic care, and facilitating communication. Stories reflected paid carer volunteerism; lack of orientation of carers and hospital staff to the paid carers' roles; blurred role boundaries between paid carers, family carers, and nurses; and paid carers being uncertain about their own responsibilities for staff and patient safety. New policies and practice guidelines are needed to guide both health and disability services in clarifying paid carer roles and role boundaries, and to enable paid carers and hospital staff to work together effectively on the ward in the care of adults with developmental disability.

The "Big 5" and beyond: nurses, paid carers, and adults with developmental disability discuss communication needs in hospital.

Adults with developmental disability and little or no speech need to communicate with nurses in hospital to (a) express physical needs, (b) discuss health, (c) convey intelligence and emotions, (d) connect socially, and (e) control the environment. All stakeholders need access to a variety of communication strategies to support communication of these needs.