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.

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.

Alternative service delivery models for families with a new speech generating device: Perspectives of parents and therapists.

PURPOSE: Research has revealed limitations in the provision of in-person services to families with a new speech generating device (SGD), both in Australia and overseas. Alternative service models such as parent training, peer support and telepractice may offer a solution, but their use with this population has not been researched to date. METHOD: Using interviews and focus groups, this study explored the experiences and opinions of 13 speech-language pathologists and seven parents regarding alternatives to in-person support and training for families with a new SGD. Data were analysed using grounded theory. Themes explored in this paper include the benefits and drawbacks of alternative service models as well as participants' suggestions for the optimal implementation of these approaches. RESULT: Participants confirmed the utility of alternative service models, particularly for rural/remote and underserviced clients. Benefits of these models included reduced travel time for families and therapists, as well as enhanced information access, support and advocacy for parents. CONCLUSION: Participants viewed the provision of ongoing professional support to families as critical, regardless of service modality. Additional issues arising from this study include the need for development of organizational policies, resources and training infrastructure to support the implementation of these alternative service models.

The stories of older parents of adult sons and daughters with autism: a balancing act.

BACKGROUND: Researchers acknowledge the importance of understanding how families of children with autism cope. Yet, little is known about the experiences of older parents of adults with autism. MATERIALS AND METHODS: In-depth interviews were conducted with 16 older parents of adults with autism. Narrative analysis was used to gain insights into their lived experiences. RESULTS: Participants' narratives reflected the notion that much of their experience was a delicate balancing act as they attempted to manage their offspring's symptoms of autism whilst achieving a degree of fulfilment in their own lives. Parents did not believe that formal services had adequately supported their ability to provide care whilst meeting other needs within the family context. CONCLUSIONS: The findings have implications for services that attempt to support older parents' abilities to provide care, including the need for tailored intervention strategies that match each family's unique needs.

Buried by autism: older parents' perceptions of autism.

In this study, we explored older parents' perceptions of their adult sons and daughters with autism in order to gain insights into how parents' beliefs about autism may influence their coping. Narrative analysis of in-depth interviews held with 16 parents aged 60 years and older of adults with autism revealed that these parents perceived that their son's or daughter's intelligence, sense of humour and social personality are blocked by autism. Adherence to these beliefs appeared to comprise important coping strategies that supported these parents in their caregiving roles by assisting them to maintain positive perceptions of their son or daughter with autism. Yet such beliefs also held costs for the parents, including reinforcing the belief that they need to regulate their own behaviour in order to realize the true son or daughter buried by autism.

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.

Health transitions for youth with complex communication needs: The importance of health literacy and communication strategies.

Pediatric rehabilitation specialists have key roles to play in preparing young people with complex communication needs (CCN) to participate in the adult health care system. As adults, individuals with CCN are responsible for describing their health needs, scheduling services, and self-advocating with health care specialists so they can access habilitation and rehabilitation services and technologies and have their health concerns addressed. Pediatric rehabilitation specialists can help adolescents with CCN (and their support teams) acquire both an understanding of how adult services are organized, as well as the health literacy, communication, and collaboration skills they will need to ensure successful health outcomes.