Professor Bronwyn Hemsley is Head of Speech Pathology at UTS. A certified practicing speech pathologist, she is also a Fellow of Speech Pathology Australia, and Fellow of the International Society for Augmentative and Alternative Communication. With almost 10 years postdoctoral experience Bronwyn has been awarded $1.7M in research funding enabling development of a comprehensive program of research relating to the use of Information Communication Technologies in the field of Communication Disability, and the care and safety of people with severe communication impairments (PhD, Sydney University 2008). She received an NHMRC PhD Scholarship 2005-2007, NHMRC Postdoctoral Fellowship to the Communication Disability Centre at the University of Queensland in 2009-2012, two NHMRC research project grants in 2013 and 2014, and the Discovery Early Career Research Award (Australian Research Council) 2014-2017. Bronwyn’s research excellence and engagement in translating this to teaching, policy, and practice was recognised with the Dean's Award for Research Excellence for a mid career researcher at the University of Newcastle in 2016. Bronwyn has co-edited three Special Issues of journals (Disability and Rehabilitation, on Social Media and Communication; and Developmental Neurorehabilitation, on Communication Rehabilitation, and of Augmentative and Alternative Communication). She is currently an Editor-in-Chief of the Augmentative and Alternative Communication journal, the flagship journal of the International Society for Augmentative and Alternative Communication (ISAAC). Her research on the use of Twitter by people with communication disability reflects her high level of engagement in using social media as a communication technology. Bronwyn is co-administrator for the world's only rotation curation Twitter account for speech pathologists, @WeSpeechies, a worldwide network designed to connect speech pathologist researchers, teachers, and students with each other for professional development and with the public for improved engagement and public health.
Can supervise: YES
- 3D food printing and people with swallowing disorders
- Dysphagia and mealtime management for people with lifelong disability
- Intellectual and Developmental Disability
- Communication technologies
- Augmentative and Alternative Communication
- Hospital Communication and Patient Safety (Patients with communication disability)
- e-Health Records and personal control in the exchange of health information
- Use of social media as a communication technology for people with communication disability
- Social media networks and professional development
- Being and finding credible sources of health information on social media
- Health evidence and systematic reviewing
- Translation of research into clinical guidance and training
Augmentative and Alternative Communication
Research Methods (reviewing, design, and research projects)
Brunner, M, Togher, L, Palmer, S, Dann, S & Hemsley, B 2020, 'Rehabilitation professionals' views on social media use in traumatic brain injury rehabilitation: gatekeepers to participation.', Disability and Rehabilitation, pp. 1-10.View/Download from: Publisher's site
Purpose: Rehabilitation professionals support people with traumatic brain injury (TBI) to return to meaningful participation in life and society - which now includes the use of social media. However, the role of health professionals in supporting the use of social media by adults with TBI is not yet known. This study aimed to investigate the experiences and views of rehabilitation professionals on the use of social media by people with TBI during rehabilitation.Method: Two focus groups were conducted and analysed qualitatively for content themes.Results: Eleven rehabilitation professionals, including allied health, recreational therapy, and service management, took part in this study. Participants identified potential benefits to people with TBI using social media, including reduced social isolation. However, they expressed concerns about social media risks relating to the vulnerability, exploitation, and reputation management for people with TBI. Rehabilitation professionals viewed their role as being to protect people from these risks of harm, either through imposing restrictions on social media use or responding to problems after these occurred.Conclusion: A knowledge translation approach might help guide and support rehabilitation professionals in enabling adults with TBI to safely access and experience the benefits of meaningful engagement in social media during rehabilitation.Implications for rehabilitationRehabilitation professionals can start addressing social media use during collaborative goal setting, in order to support people with traumatic brain injury to use social media successfully during rehabilitation and beyond. To do this, professionals can inquire as to the person's previous social media use and identify priority areas for the person for short- and long-term goals.Rehabilitation targeting social media use should include instruction for participation in social media platforms, providing education and feedback that is positive and constructive...
Bryant, L, Brunner, M & Hemsley, B 2020, 'A review of virtual reality technologies in the field of communication disability: implications for practice and research.', Disability and Rehabilitation Assistive Technology, vol. 15, no. 4, pp. 365-372.View/Download from: Publisher's site
BACKGROUND:Technology devices and applications including virtual reality (VR) are increasingly used in healthcare research and practice as tools to promote health and wellbeing. However, there is limited research examining the potential for VR to enable improved communication for people with communication disability. AIMS:To review: (a) current research using VR in speech-language pathology; and (b) the ethical and safety considerations of VR research, to inform an agenda for future research applying VR in the field of speech-language pathology. MAIN CONTRIBUTION:This review reveals that there is an emergent body of literature applying VR to improve or develop physical, psychological and communication interventions. Use of non-immersive virtual environments to provide speech-language pathology assessment or intervention for people with communication disability has demonstrated positive outcomes, with emerging evidence of the transfer of functional communication skills from virtual to real-world environments. However, the use of VR technology and immersive virtual environments in communication disability practice and research introduces safety and ethical issues that must be carefully considered. CONCLUSIONS:Research employing VR is in its infancy in the field of speech-language pathology. Early evidence from other healthcare disciplines suggests that VR is an engaging means of delivering immersive and interactive training to build functional skills that can be generalized to the real world. While the introduction of new technology requires careful consideration of research ethics and patient safety, future VR communication research could proceed safely with adequate engagement of interdisciplinary teams and technology specialists. Implications for rehabilitation Immersive virtual reality may be used in rehabilitation to simulate natural environments to practice and develop communication skills. The sense of immersion that can be achieved using virtual reality may...
Dahm, MR, Georgiou, A, Balandin, S, Hill, S & Hemsley, B 2020, 'Health Information and the Quality and Safety of Care for People With Disability: An Analysis of Australian Reports of Reviewable Deaths in Residential Care.', Journal of Patient Safety.View/Download from: Publisher's site
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.
Walsh, L, Hemsley, B, Allan, M, Dahm, MR, Balandin, S, Georgiou, A, Higgins, I, McCarthy, S & Hill, S 2020, 'Assessing the information quality and usability of My Health Record within a health literacy framework: What's changed since 2016?', Health Information Management Journal.View/Download from: Publisher's site
© The Author(s) 2019. 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.
Lucas, C, Power, T, Kennedy, DS, Forrest, G, Hemsley, B, Freeman-Sanderson, A, Courtney-Harris, M, Ferguson, C & Hayes, C 2020, 'Conceptualisation and development of the RIPE-N model (reflective interprofessional education-network model) to enhance interprofessional collaboration across multiple health professions', Reflective Practice, pp. 1-18.View/Download from: Publisher's site
© 2020, © 2020 Informa UK Limited, trading as Taylor & Francis Group. This paper describes a novel model of learning, designed to enhance interprofessional education (IPE) and interprofessional collaboration (IPC). Lessons learned, plans for sustainability and future directions for policy, practice, implementation, and curriculum training are also discussed. The RIPE-N model (Reflective Interprofessional Education–Network model) was developed for an interprofessional simulation environment involving five health professions–pharmacy, nursing, orthoptics, physiotherapy, and speech pathology with the potential to increase the number of health professions involved. The RIPE-N model was adapted from the original RIPE Model (Reflective Interprofessional Education Model), utilising unfolding multidisciplinary case from admission through to discharge. Key adaptations of RIPE to include a greater focus on professional practice and the opportunity for collaboration by all disciplines. Reflection is critical to the RIPE-N model to develop the reflective practitioner, hence the inclusion of collaborative reflective ('pause and reflect') stations aimed at improving collaborative clinical decision-making skills among diverse healthcare professionals.
Brunner, M, Palmer, S, Togher, L & Hemsley, B 2019, ''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.', International Journal of Language and Communication Disorders, vol. 54, no. 2, pp. 221-233.View/Download from: Publisher's site
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.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.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.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.Social media offers adults with TBI several opportunities to communicate and for some to develop and strengthen social relationships. How...
Brunner, M, Palmer, S, Togher, L, Dann, S & Hemsley, B 2019, '"If i knew what i was doing on Twitter then i would use it more": Twitter experiences and networks of people with traumatic brain injury (TBI)', Brain Impairment, vol. 21, no. 1.View/Download from: Publisher's site
© Australasian Society for the Study of Brain Impairment 2019. Aim:of this study was to examine the Twitter experiences and networks of six adults with cognitive-communication disability after a traumatic brain injury (TBI).Method:Using mixed methods, the study integrated: (a) quantitative analysis of Twitter networks using computational and manual coding of tweets; and (b) narrative analysis of in-depth interviews.Results:Diverse experiences were evident, with two experienced and four novice users of the platform. However, all reported feeling connected and included, and identified both positive and negative experiences in their use of Twitter. Developing a supportive network facilitated higher frequency of tweets and increased feelings of enjoyment and connectedness. All expressed a desire to continue using or learning to use Twitter but novices lacked support from rehabilitation professionals or experienced Twitter users, and relied instead on a "trial and error" approach.Conclusion:Proactive integration of Twitter use during rehabilitation after TBI is warranted to support safe, enjoyable, and meaningful use.
Brunner, M, Palmer, S, Togher, L, Dann, S & Hemsley, B 2019, 'Content Analysis of Tweets by People with Traumatic Brain Injury (TBI): Implications for Rehabilitation and Social Media Goals', Proceedings of the 52nd Hawaii International Conference on System Sciences 2019 (HICSS-52), vol. 52, no. Social Media and Healthcare Technology, pp. 4329-4338.
In this Twitter research, 6874 tweets of six adults with traumatic brain injury (TBI) were analyzed qualitatively and quantitatively using content classification , inductive coding of content themes, socio-linguistic analysis, and computational analysis in KH Coder. The results reflected that participants used Twitter for: (i) supporting others, including people with TBI; (ii) discussing society and culture, popular issues, news, and personal interests; (iii) connecting with others; (iv) sharing their experiences of life after TBI; (v) knowledge via exchanging information; and (vii) advocacy. 'Emotional expression', and 'connection' were common threads running across themes. Attending to the expressions of people with TBI on Twitter provides important insights into their lived experiences and could inform the development of user-centered cognitive-communication and social participation goals for people with TBI.
Dahm, MR, Georgiou, A, Balandin, S, Hill, S & Hemsley, B 2019, 'Health Information Infrastructure for People with Intellectual and Developmental Disabilities (I/DD) Living in Supported Accommodation: Communication, Co-Ordination and Integration of Health Information.', Health Communication, vol. 34, no. 1, pp. 91-99.View/Download from: Publisher's site
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.
Dahm, MR, Georgiou, A, Bryant, L & Hemsley, B 2019, 'Information infrastructure and quality person-centred support in supported accommodation: An integrative review.', Patient education and counseling, vol. 102, no. 8, pp. 1413-1426.View/Download from: Publisher's site
OBJECTIVES:To integrate findings on the information infrastructure for people with intellectual or developmental disability (I/DD) living in supported accommodation, to understand how documentation use impacts person-centred support. METHODS:We conducted an integrative literature review. Following screening by two independent reviewers, we included English language peer-reviewed empirical studies (n = 34) on documentation use for people with I/DD in domestic-scale supported accommodation. We appraised quality and extracted information for iterative comparative thematic and content analysis. RESULT:All studies reported written documentation regarding either the person with disability or the residence. Eighteen studies focused on health-specific information. We identified three key themes impacting on the person-centred support; 1) level of inclusion and independence of people with I/DD, 2) the culture of support within group homes, and 3) the quality use of information. CONCLUSIONS:Information infrastructure is closely aligned with the support culture in residences and can affect whether and to what extent key stakeholders (i.e., people with I/DD, family members) are involved in making decisions about healthcare and support needs. PRACTICE IMPLICATIONS:Surveying local service health information infrastructure can provide crucial insights which can be leveraged to improve the safety and quality of supports provided for people living in supported accommodation.
Hemsley, B, Meredith, J, Bryant, L, Wilson, NJ, Higgins, I, Georgiou, A, Hill, S, Balandin, S & McCarthy, S 2019, 'An integrative review of stakeholder views on Advance Care Directives (ACD): Barriers and facilitators to initiation, documentation, storage, and implementation', PATIENT EDUCATION AND COUNSELING, vol. 102, no. 6, pp. 1067-1079.View/Download from: Publisher's site
Hemsley, B, Steel, J, Sheppard, JJ, Malandraki, GA, Bryant, L & Balandin, S 2019, 'Dying for a Meal: An Integrative Review of Characteristics of Choking Incidents and Recommendations to Prevent Fatal and Nonfatal Choking Across Populations', AMERICAN JOURNAL OF SPEECH-LANGUAGE PATHOLOGY, vol. 28, no. 3, pp. 1283-1297.View/Download from: Publisher's site
Hemsley, B, Steel, J, Worrall, L, Hill, S, Bryant, L, Johnston, L, Georgiou, A & Balandin, S 2019, 'A Systematic Review of Falls in Hospital for Patients with Communication Disability: Highlighting an 'Invisible' Population', Journal of Safety Research, vol. 68, pp. 89-105.View/Download from: Publisher's site
Background: Patients with communication disability (associated with impairments of speech, language, hearing, or voice) have a three-fold increased risk of adverse events in hospital. A patient's ability to understand and communicate their needs may put them at risk of a fall in hospital.
Objective: To examine the role of communication disability in hospital falls risk.
Methods: This systematic review examined 61 studies on falls of adult hospital patients with or at high risk of communication disability. Information was extracted and analysed across studies to determine whether or not communication disability increased risk for falls, the nature of any increased risk, and any reasons for any increased risk.
Results: In total, 46 of the included studies (75%) reported specifically on participants with communication disability. Two thirds of the studies examining falls risk identified communication disability as contributing factor to falls. However, patients with communication disability were often deliberately excluded from the research, measures of communication or cognition were often not reported, and reasons for any increased risk for
falls of participants with communication disability were not discussed.
Conclusions: There is some evidence that communication disability is associated with increased risk of falls, but research to date has not adequately considered this problem, and questions regarding reasons for the increased risk remain. Practical Applications: Hospital falls risk measures, prevention strategies, and research should include patients with communication disability to ensure their falls risk is examined and managed appropriately. Including speech-language pathologists in hospital falls research teams could help to address the methodological and analytic challenges to including adults with communication disability and interpreting results for this group.
Schlosser, RW, Hemsley, B, Shane, H, Todd, J, Lang, R, Lilienfeld, SO, Trembath, D, Mostert, M, Fong, S & Odom, S 2019, 'Rapid Prompting Method and Autism Spectrum Disorder: Systematic Review Exposes Lack of Evidence', Review Journal of Autism and Developmental Disorders, vol. 6, no. 4, pp. 403-412.View/Download from: Publisher's site
© 2019, Springer Science+Business Media, LLC, part of Springer Nature. This systematic review is aimed at examining the effectiveness of the rapid prompting method (RPM) for enhancing motor, speech, language, and communication and for decreasing problem behaviors in individuals with autism spectrum disorder (ASD). A multi-faceted search strategy was carried out. A range of participant and study variables and risk and bias indicators were identified for data extraction. RPM had to be evaluated as an intervention using a research design capable of empirical demonstration of RPM's effects. No studies met the inclusion criteria, resulting in an empty review that documents a meaningful knowledge gap. Controlled trials of RPM are warranted. Given the striking similarities between RPM and Facilitated Communication, research that examines the authorship of RPM-produced messages needs to be conducted.
Steel, J, Georgiou, A, Balandin, S, Hill, S, Worrall, L & Hemsley, B 2019, 'A content analysis of documentation on communication disability in hospital progress notes: diagnosis, function, and patient safety.', Clinical rehabilitation, vol. 33, no. 5, pp. 943-956.View/Download from: Publisher's site
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.
Brunner, M, Hemsley, B, Dann, S, Togher, L & Palmer, S 2018, 'Hashtag #TBI: A content and network data analysis of tweets about Traumatic Brain Injury.', Brain injury, vol. 32, no. 1, pp. 49-63.View/Download from: Publisher's site
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.Mixed methods in a Twitter hashtag study.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.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.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.
Hemsley, B, McCarthy, S, Adams, N, Georgiou, A, Hill, S & Balandin, S 2018, 'Legal, ethical, and rights issues in the adoption and use of the "My Health Record" by people with communication disability in Australia', Journal of Intellectual and Developmental Disability, vol. 43, no. 4, pp. 506-514.View/Download from: Publisher's site
© 2017, © 2017 Australasian Society for Intellectual Disability, Inc. Background: The aim of this review was to explore the legal, ethical, and rights issues surrounding use of the Australian My Health Record (MyHR) by people with communication disability. Method: We undertook a narrative review of the legislation and research affecting the implementation of MyHR in populations with communication disability. Results: Use of MyHR by people with communication disability will require careful consideration in relation to (a) capacity and consent; (b) roles of nominated or authorised representatives in the system; and (c) the way decisions are made in relation to the use of MyHR, including supported decision-making for people with intellectual disability. Conclusion: Legal and ethical issues in the use of MyHR by people with communication disability centre on legal rights and equal access. These issues must be addressed if people with communication disability are to have full access to their legal rights and access in exercising personal choice and control in the use of MyHR.
Hemsley, B, Palmer, S, Dann, S & Balandin, S 2018, 'Using Twitter to access the human right of communication for people who use Augmentative and Alternative Communication (AAC)', INTERNATIONAL JOURNAL OF SPEECH-LANGUAGE PATHOLOGY, vol. 20, no. 1, pp. 50-58.View/Download from: Publisher's site
Hemsley, B, Rollo, M, Georgiou, A, Balandin, S & Hill, S 2018, 'The health literacy demands of electronic personal health records (e-PHRs): An integrative review to inform future inclusive research', PATIENT EDUCATION AND COUNSELING, vol. 101, no. 1, pp. 2-15.View/Download from: Publisher's site
Meredith, J, McCarthy, S & Hemsley, B 2018, 'Legal and ethical issues surrounding the use of older children's electronic personal health records', Journal of Law and Medicine, vol. 25, no. 4, pp. 1042-1055.
© 2018 Thomson Head Office. 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.
Smith, M & Hemsley, B 2018, 'Reflections on a special issue: motivations to encourage intervention designs', AAC: Augmentative and Alternative Communication, vol. 34, no. 4, pp. 255-257.View/Download from: Publisher's site
Walsh, L, Hill, S, Allan, M, Balandin, S, Georgiou, A, Higgins, I, Kraal, B, McCarthy, S & Hemsley, B 2018, 'A content analysis of the consumer-facing online information about My Health Record: Implications for increasing knowledge and awareness to facilitate uptake and use', Health Information Management Journal, vol. 47, no. 3.View/Download from: Publisher's site
© 2017, The Author(s) 2017. Background: Low health literacy, low levels of positive belief and privacy and security concerns have been identified as a significant barrier to personal electronic health record uptake and use. An important tool for overcoming these barriers is the consumer-facing information which accompanies the system. My Health Record (MyHR) is the Australian national e-health record system, for which a large suite of online resources exists to facilitate consumer registration and use. This study uses a number of different measures of health resource quality to assess the MyHR online consumer-facing information and identify any gaps or areas for improvement. Objective: To analyse the quality and content of the online consumer-facing resources which support the uptake and use of MyHR. Method: Australian information resources aimed at healthcare consumers about the MyHR were included in this study. A comprehensive search using Internet search engines was conducted to locate all online consumer-facing resources about MyHR from both government and non-government sources. Readability (measured by Flesch–Kincaid grade level), year of publication/review, publishing organisation type, presentation style, linked websites, target audience, and themes were identified as important measures of health information quality, and these were recorded and reported on for each resource. Results: Eighty resources met the inclusion criteria. The mean Flesch–Kincaid grade level was 11.8. Most resources were created by Australian government sources (n = 55), and the most common target audience was the general public (n = 65). Registration (n = 51), privacy/security (n = 49), and benefits of use (n = 46) were the most common resource themes. Conclusion: The authors identified a number of gaps and areas for improvement in the provision of consumer-facing information about MyHR. Readability is too high for the general Australian population, and there are few translated reso...
Brunner, M, Hemsley, B, Togher, L & Palmer, S 2017, 'Technology and its role in rehabilitation for people with cognitive-communication disability following a traumatic brain injury (TBI).', Brain Injury, vol. 31, no. 8, pp. 1028-1043.View/Download from: Publisher's site
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.This integrative literature review of communication technology in TBI rehabilitation and cognitive-communication involved searching nine scientific databases and included 95 studies.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.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.
Hemsley, B & Balandin, S 2017, 'Evidence and innovation in AAC research: expanding borders and boundaries for a global audience.', Augmentative and Alternative Communication, vol. 33, no. 1, pp. 1-2.View/Download from: Publisher's site
Hemsley, B, Balandin, S, Palmer, S & Dann, S 2017, 'A call for innovative social media research in the field of augmentative and alternative communication.', Augmentative and Alternative Communication, vol. 33, no. 1, pp. 14-22.View/Download from: Publisher's site
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.
McCarthy, S, Meredith, J, Bryant, L & Hemsley, B 2017, 'Legal and Ethical Issues Surrounding Advance Care Directives in Australia: Implications for the Advance Care Planning Document in the Australian My Health Record.', Journal of Law and Medicine, vol. 25, no. 1, pp. 136-149.
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
Sheppard, JJ, Malandraki, GA, Pifer, P, Cuff, J, Troche, M, Hemsley, B, Balandin, S, Mishra, A & Hochman, R 2017, 'Validation of the Choking Risk Assessment and Pneumonia Risk Assessment for adults with Intellectual and Developmental Disability (IDD).', Research in Developmental Disabilities, vol. 69, pp. 61-76.View/Download from: Publisher's site
Risk assessments are needed to identify adults with intellectual and developmental disability (IDD) at high risk of choking and pneumonia.To describe the development and validation of the Choking Risk Assessment (CRA) and the Pneumonia Risk Assessment (PRA) for adults with IDD.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.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).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.
Walsh, L, Hemsley, B, Allan, M, Adams, N, Balandin, S, Georgiou, A, Higgins, I, McCarthy, S & Hill, S 2017, 'The E-health Literacy Demands of Australia's My Health Record: A Heuristic Evaluation of Usability.', Perspectives In Health Information Management, vol. 14, no. Fall, pp. 1-28.
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.To identify potential e-health literacy-related usability issues within My Health Record through a heuristic evaluation method.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.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 cr...
Hemsley, B 2016, 'Evidence does not support the use of Rapid Prompting Method (RPM) as an intervention for students with autism spectrum disorder and further primary research is not justified', Evidence-Based Communication Assessment and Intervention, vol. 10, no. 3-4, pp. 122-130.View/Download from: Publisher's site
© 2016 Informa UK Limited, trading as Taylor & Francis Group. This review provides a summary and appraisal commentary on the treatment review by Deacy, E., Jennings, F., & O'Halloran, A. (2016). Rapid Prompting Method (RPM): A suitable intervention for students with ASD? REACH Journal of Special Needs Education in Ireland, 29, 92–100. Source of funding and declaration of interests: This review was supported in part by funding from the Australian Research Council [grant number DE140100443].
Hemsley, B & Palmer, S 2016, 'Two studies on twitter networks and tweet content in relation to amyotrophic lateral sclerosis (ALS): Conversation, information, and 'diary of a daily life'', Studies in Health Technology and Informatics, vol. 227, pp. 41-47.View/Download from: Publisher's site
© 2016 The authors and IOS Press. To date, there is no research examining how adults with Amyotrophic Lateral Sclerosis (ALS) or Motor Neurone Disease (MND) and severe communication disability use Twitter, nor the use of Twitter in relation to ALS/MND beyond its use for fundraising and raising awareness. In this paper we (a) outline a rationale for the use of Twitter as a method of communication and information exchange for adults with ALS/MND, (b) detail multiple qualitative and quantitative methods used to analyse Twitter networks and tweet content in the our studies, and (c) present the results of two studies designed to provide insights on the use of Twitter by an adult with ALS/MND and by #ALS and #MND hashtag communities in Twitter. We will also discuss findings across the studies, implications for health service providers in Twitter, and directions for future Twitter research in relation to ALS/MND.
Hemsley, B, Georgiou, A, Carter, R, Hill, S, Higgins, I, van Vliet, P & Balandin, S 2016, 'Use of the my health record by people with communication disability in Australia: A review to inform the design and direction of future research', Health Information Management Journal, vol. 45, no. 3, pp. 107-115.View/Download from: Publisher's site
© The Author(s) 2016. Background: People with communication disability often struggle to convey their health information to multiple service providers and are at increased risk of adverse health outcomes related to the poor exchange of health information. Objective: The purpose of this article was to (a) review the literature informing future research on the Australian personally controlled electronic health record, 'My Health Record' (MyHR), specifically to include people with communication disability and their family members or service providers, and (b) to propose a range of suitable methodologies that might be applied in research to inform training, policy and practice in relation to supporting people with communication disability and their representatives to engage in using MyHR. Method: The authors reviewed the literature and, with a cross-disciplinary perspective, considered ways to apply sociotechnical, health informatics, and inclusive methodologies to research on MyHR use by adults with communication disability. Research outcomes: This article outlines a range of research methods suitable for investigating the use of MyHR by people who have communication disability associated with a range of acquired or lifelong health conditions, and their family members, and direct support workers. Conclusion: In planning the allocation of funds towards the health and well-being of adults with disabilities, both disability and health service providersmust consider the supports needed for people with communication disability to use MyHR.There is an urgent need to focus research efforts on MyHR in populations with communication disability, who struggle to communicate their health information acrossmultiple health and disability service providers. The design of studies and priorities for future research should be set in consultation with people with communication disability and their representatives.
Hemsley, B, Georgiou, A, Hill, S, Rollo, M, Steel, J & Balandin, S 2016, 'An integrative review of patient safety in studies on the care and safety of patients with communication disabilities in hospital', Patient Education and Counseling, vol. 99, no. 4, pp. 501-511.View/Download from: Publisher's site
© 2015 Elsevier Ireland Ltd. Objective: To review the research literature on the experiences of patients with communication disabilities in hospital according to the Generic Model of patient safety. Methods: In 2014 and 2015, we searched four scientific databases for studies with an aim or result relevant to safety of hospital patients with communication disabilities. The review included 27 studies. Results: A range of adverse event types were outlined in qualitative research. Little detail was provided about contributing or protective factors for safety incidents in hospital for these patients or the impact of the incidents on the patient or organisations involved. Conclusion: Further research addressing the safety of patients with communication disabilities is needed. Sufficient detail is required to identify the nature, timing, and detection of incidents; factors that contribute to or prevent adverse events; and detail the impact of the adverse events. Practice implications: In order to provide safe and effective care to people with communication disabilities in hospital, a priority for health and disability services must be the design and evaluation of ecologically appropriate and evidence-based interventions to improve patient care, communication, and reduce the risk of costly and harmful patient safety incidents.
Hilton, S, Sheppard, JJ & Hemsley, B 2016, 'Feasibility of implementing oral health guidelines in residential care settings: Views of nursing staff and residential care workers', Applied Nursing Research, vol. 30, pp. 194-203.View/Download from: Publisher's site
© 2015 Elsevier Inc. 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.
Sharpe, B & Hemsley, B 2016, 'Improving nurse-patient communication with patients with communication impairments: Hospital nurses' views on the feasibility of using mobile communication technologies', Applied Nursing Research, vol. 30, pp. 228-236.View/Download from: Publisher's site
© 2015 Elsevier Inc. 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.
Brunner, M, Hemsley, B, Palmer, S, Dann, S & Togher, L 2015, 'Review of the literature on the use of social media by people with traumatic brain injury (TBI)', DISABILITY AND REHABILITATION, vol. 37, no. 16-17, pp. 1511-1521.View/Download from: Publisher's site
Hemsley, B & Murray, J 2015, 'Distance and proximity: Research on social media connections in the field of communication disability', Disability and Rehabilitation, vol. 37, no. 17, pp. 1509-1510.View/Download from: Publisher's site
Hemsley, B, Balandin, S, Sheppard, JJ, Georgiou, A & Hill, S 2015, 'A call for dysphagia-related safety incident research in people with developmental disabilities', Journal of Intellectual and Developmental Disability, vol. 40, no. 1, pp. 99-103.View/Download from: Publisher's site
Hemsley, B, Dann, S, Palmer, S, Allan, M & Balandin, S 2015, '"We definitely need an audience": Experiences of Twitter, Twitter networks and tweet content in adults with severe communication disabilities who use augmentative and alternative communication (AAC)', Disability and Rehabilitation, vol. 37, no. 17, pp. 1531-1542.View/Download from: Publisher's site
© 2015 The Author(s). Published by Taylor & Francis. Purpose: The aim of this study was to investigate the Twitter experiences of adults with severe communication disabilities who use augmentative and alternative communication (AAC) to inform Twitter training and further research on the use of Twitter in populations with communication disabilities. Method: This mixed methods research included five adults with severe communication disabilities who use AAC. It combined (a) quantitative analysis of Twitter networks and (b) manual coding of tweets with (c) narrative interviews with participants on their Twitter experiences and results. Results: The five participants who used AAC and Twitter were diverse in their patterns and experiences of using Twitter. Twitter networks reflected interaction with a close-knit network of people rather than with the broader publics on Twitter. Conversational, Broadcast and Pass Along tweets featured most prominently, with limited use of News or Social Presence tweets. Tweets appeared mostly within each participant's micro- or meso-structural layers of Twitter. Conclusions: People who use AAC report positive experiences in using Twitter. Obtaining help in Twitter, and engaging in hashtag communities facilitated higher frequency of tweets and establishment of Twitter networks. Results reflected an inter-connection of participant Twitter networks that might form part of a larger as yet unexplored emergent community of people who use AAC in Twitter.Implications for RehabilitationTwitter can be used as an important vehicle for conversation and a forum for people with communication disabilities to exchange information and participate socially in online communities.It is important that information and resources relating to the effective use of Twitter for a range of purposes are made available to people with communication disabilities who wish to take up or maintain use of Twitter.People with communication disabilities might benefit from s...
Hemsley, B, Georgiou, A, Balandin, S, Carter, R, Hill, S, Higgins, I, Van Vliet, P & McCarthy, S 2015, 'The Personally Controlled Electronic Health Record (PCEHR) for Adults with Severe Communication Impairments: Findings of Pilot Research', Studies in Health Technology and Informatics, vol. 214, pp. 100-106.View/Download from: Publisher's site
© 2015 The authors and IOS Press. To date, there is little information in the literature to guide the provision of supports for using the Personally Controlled Electronic Health Record (PCEHR) in populations with severe communication impairments associated with a range of disabilities. In this paper we will (a) outline the rationale for use of PCEHR in these populations by providing an overview of relevant research to date, and (b) present results of three integrated pilot studies aiming to investigate the barriers to and facilitators for PCEHR use by people with severe communication impairments and their service providers. Finally, we will present directions for future research on use of PCEHR by people with severe communication impairments.
Donato, C, Shane, HC & Hemsley, B 2014, 'Exploring the feasibility of the Visual Language in Autism program for children in an early intervention group setting: Views of parents, educators, and health professionals', Developmental Neurorehabilitation, vol. 17, no. 2, pp. 115-124.View/Download from: Publisher's site
Objective: To explore the views of key stakeholders on using visual supports for children with developmental disabilities in early intervention group settings. Specifically, this study aimed to determine stakeholders' views on the barriers to and facilitators for the use of visual supports in these settings to inform the feasibility of implementing an immersive Visual Language in Autism program. Methods: This study involved three focus groups of parents, educators, and health professionals at one Australian early intervention group setting. Results: Lack of time, limited services, negative attitudes in society, and inconsistent use were cited as common barriers to using visual supports. Facilitators included having access to information and evidence on visual supports, increased awareness of visual supports, and the use of mobile technologies. Conclusion: The Visual Language in Autism program is feasible in early intervention group settings, if barriers to and facilitators for its use are addressed to enable an immersive visual language experience. © 2014 Informa UK Ltd.
Hemsley, B & Balandin, S 2014, 'A metasynthesis of patient-provider communication in hospital for patients with severe communication disabilities: Informing new translational research', AAC: Augmentative and Alternative Communication, vol. 30, no. 4, pp. 329-343.View/Download from: Publisher's site
© 2014 International Society for Augmentative and Alternative Communication. Poor patient-provider communication in hospital continues to be cited as a possible causal factor in preventable adverse events for patients with severe communication disabilities. Yet to date there are no reports of empirical interventions that investigate or demonstrate an improvement in communication in hospital for these patients. The aim of this review was to synthesize the findings of research into communication in hospital for people with severe communication disabilities arising from lifelong and acquired stable conditions including cerebral palsy, autism, intellectual disability, aphasia following stroke, but excluding progressive conditions and those solely related to sensory impairments of hearing or vision. Results revealed six core strategies suggested to improve communication in hospital: (a) develop services, systems, and policies that support improved communication, (b) devote enough time to communication, (c) ensure adequate access to communication tools (nurse call systems and communication aids), (d) access personally held written health information, (e) collaborate effectively with carers, spouses, and parents, and (f) increase the communicative competence of hospital staff. Currently there are no reports that trial or validate any of these strategies specifically in hospital settings. Observational and evaluative research is needed to investigate the ecological validity of strategies proposed to improve communication.
Hemsley, B & Balandin, S 2014, 'Innovative communication rehabilitation in the year of the international communication project 2014', Developmental Neurorehabilitation, vol. 17, no. 2, pp. 73-74.View/Download from: Publisher's site
Hemsley, B & Dann, S 2014, 'Social media and social marketing in relation to facilitated communication: Harnessing the affordances of social media for knowledge translation', Evidence-Based Communication Assessment and Intervention, vol. 8, no. 4, pp. 187-206.View/Download from: Publisher's site
© 2015 Taylor & Francis. Abstract: In this reply to Lilienfeld, Marshall, Todd, and Shane (2015) we provide a social marketing perspective on ways that facilitated communication (FC) is presented and discussed on social media platforms, in the field of augmentative and alternative communication (AAC). The growth in uptake and use of FC in recent years has occurred in the context of rapid growth in mobile technologies and AAC integrated with social media and online learning. Social media have been used to disseminate both materials that are supportive of FC and materials that provide scientific evidence of facilitator influence over authorship in FC. In order to illustrate how social media are being used to spread information about FC, we present a limited scan of two social media sites—Twitter™ and YouTube™—for information about FC. In this paper we discuss barriers to evidence and facilitators for FC in social media and consider the role that social marketing might play in relation to FC. Clinical implications for using social media to counter FC and directions for future research are discussed.
Hemsley, B, Lee, S, Munro, K, Seedat, N, Bastock, K & Davidson, B 2014, 'Supporting communication for children with cerebral palsy in hospital: Views of community and hospital staff', Developmental Neurorehabilitation, vol. 17, no. 3, pp. 156-166.View/Download from: Publisher's site
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. © The Authors.
Hemsley, B, Palmer, S & Balandin, S 2014, 'Tweet reach: A research protocol for using Twitter to increase information exchange in people with communication disabilities', Developmental Neurorehabilitation, vol. 17, no. 2, pp. 84-89.View/Download from: Publisher's site
Objective: To (a) outline the background to research evaluating Twitter use by people with severe physical and communication disabilities participating actively in online communication forums for increasing information exchange and (b) illustrate a range of potential methods that might be applied in furthering research on the use of social media by people with developmental and acquired communication disabilities. Methods: The literature on communication disabilities, augmentative and alternative communication, and social media research informed the rationale for and design of three studies investigating the use of Twitter by people with communication disabilities. Results: To date, there is little information in the literature about how people with a range of communication disabilities might use Twitter to increase their access to information and help them to feel knowledgeable and in control of their own lives. Conclusion: In this paper, three studies are proposed to investigate the use of Twitter by people with communication disabilities. © 2014 Informa UK Ltd.
Schlosser, RW, Balandin, S, Hemsley, B, Iacono, T, Probst, P & Von Tetzchner, S 2014, 'Facilitated communication and authorship: A systematic review', AAC: Augmentative and Alternative Communication, vol. 30, no. 4, pp. 359-368.View/Download from: Publisher's site
© 2014 International Society for Augmentative and Alternative Communication. Facilitated Communication (FC) is a technique whereby individuals with disabilities and communication impairments allegedly select letters by typing on a keyboard while receiving physical support, emotional encouragement, and other communication supports from facilitators. The validity of FC stands or falls on the question of who is authoring the typed messages-the individual with a disability or the facilitator. The International Society for Augmentative and Alternative Communication (ISAAC) formed an Ad Hoc Committee on FC and charged this committee to synthesize the evidence base related to this question in order to develop a position statement. The purpose of this paper is to report this synthesis of the extant peer-reviewed literature on the question of authorship in FC. A multi-faceted search was conducted including electronic database searches, ancestry searches, and contacting selected authors. The authors considered synopses of systematic reviews, and systematic reviews, which were supplemented with individual studies not included in any prior reviews. Additionally, documents submitted by the membership were screened for inclusion. The evidence was classified into articles that provided (a) quantitative experimental data related to the authorship of messages, (b) quantitative descriptive data on the output generated through FC without testing of authorship, (c) qualitative descriptive data on the output generated via FC without testing of authorship, and (d) anecdotal reports in which writers shared their perspectives on FC. Only documents with quantitative experimental data were analyzed for authorship. Results indicated unequivocal evidence for facilitator control: messages generated through FC are authored by the facilitators rather than the individuals with disabilities. Hence, FC is a technique that has no validity.
Hemsley, B, Kuek, M, Bastock, K, Scarinci, N & Davidson, B 2013, 'Parents and children with cerebral palsy discuss communication needs in hospital', DEVELOPMENTAL NEUROREHABILITATION, vol. 16, no. 6, pp. 363-374.View/Download from: Publisher's site
Hemsley, B, Werninck, M & Worrall, L 2013, '"That really shouldn't have happened": People with aphasia and their spouses narrate adverse events in hospital', APHASIOLOGY, vol. 27, no. 6, pp. 706-722.View/Download from: Publisher's site
Hemsley, B 2012, 'Adults with aphasia value their involvement in teaching nursing assistant students about aphasia and communication', Evidence-Based Communication Assessment and Intervention, vol. 6, no. 2, pp. 104-107.View/Download from: Publisher's site
This review provides a summary and appraisal commentary on the treatment review by Welsh, B. D., & Szabo, G. B. (2011). Teaching nursing assistant students about aphasia and communication. Seminars in Speech and Language, 32, 243-255. Source of funding and disclosure of interest: The author is funded by an Australian NHMRC Postdoctoral Fellowship. No conflicts of interest reported by the original authors of this research report. © 2012 Copyright Taylor and Francis Group, LLC.
Hemsley, B 2012, 'Disability and Discourse: Analysing Inclusive Conversation With People With Intellectual Disabilities', JOURNAL OF INTELLECTUAL & DEVELOPMENTAL DISABILITY, vol. 37, no. 4, pp. 375-375.View/Download from: Publisher's site
Hemsley, B, Balandin, S & Worrall, L 2012, 'Nursing the patient with complex communication needs: time as a barrier and a facilitator to successful communication in hospital', JOURNAL OF ADVANCED NURSING, vol. 68, no. 1, pp. 116-126.View/Download from: Publisher's site
Hemsley, B, Balandin, S & Worrall, L 2011, 'Nursing the Patient With Developmental Disability in Hospital: Roles of Paid Carers', QUALITATIVE HEALTH RESEARCH, vol. 21, no. 12, pp. 1632-1642.View/Download from: Publisher's site
Hemsley, B, Balandin, S & Worrall, L 2011, 'The "Big 5" and beyond: Nurses, paid carers, and adults with developmental disability discuss communication needs in hospital', Applied Nursing Research, vol. 24, no. 4.View/Download from: Publisher's site
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. © 2011.
Collyer, S, Warren, C, Hemsley, B & Stevens, C 2010, 'Aim, Fire, Aim-Project Planning Styles in Dynamic Environments', PROJECT MANAGEMENT JOURNAL, vol. 41, no. 4, pp. 108-121.View/Download from: Publisher's site
Crestani, C-AM, Clendon, SA & Hemsley, B 2010, 'Words needed for sharing a story: Implications for vocabulary selection in augmentative and alternative communication', JOURNAL OF INTELLECTUAL & DEVELOPMENTAL DISABILITY, vol. 35, no. 4, pp. 268-278.View/Download from: Publisher's site
Balandin, S, Hemsley, B, Hanley, L & Sheppard, JJ 2009, 'Understanding mealtime changes for adults with cerebral palsy and the implications for support services', JOURNAL OF INTELLECTUAL & DEVELOPMENTAL DISABILITY, vol. 34, no. 3, pp. 197-206.View/Download from: Publisher's site
Hemsley, B, Balandin, S & Togher, L 2008, 'Family caregivers discuss roles and needs in supporting adults with cerebral palsy and complex communication needs in the hospital setting', JOURNAL OF DEVELOPMENTAL AND PHYSICAL DISABILITIES, vol. 20, no. 3, pp. 257-274.View/Download from: Publisher's site
Hemsley, B, Balandin, S & Togher, L 2008, ''I've got something to say': Interaction in a focus group of adults with cerebral palsy and complex communication needs', AUGMENTATIVE AND ALTERNATIVE COMMUNICATION, vol. 24, no. 2, pp. 110-122.View/Download from: Publisher's site
Hemsley, B, Balandin, S & Togher, L 2008, 'Professionals' views on the roles and needs of family carers of adults with cerebral palsy and complex communication needs in hospital', JOURNAL OF INTELLECTUAL & DEVELOPMENTAL DISABILITY, vol. 33, no. 2, pp. 127-136.View/Download from: Publisher's site
Hemsley, B, Balandin, S & Togher, L 2008, ''We need to be the centrepiece': Adults with cerebral palsy and complex communication needs discuss the roles and needs of family carers in hospital', DISABILITY AND REHABILITATION, vol. 30, no. 23, pp. 1759-1771.View/Download from: Publisher's site
Balandin, S, Hemsley, B, Sigafoos, J & Green, V 2007, 'Communicating with nurses: The experiences of 10 adults with cerebral palsy and complex communication needs', APPLIED NURSING RESEARCH, vol. 20, no. 2, pp. 56-62.View/Download from: Publisher's site
Hemsley, B, Balandin, S & Togher, L 2007, 'Older unpaid carers' experiences supporting adults with cerebral palsy and complex communication needs in hospital', JOURNAL OF DEVELOPMENTAL AND PHYSICAL DISABILITIES, vol. 19, no. 2, pp. 115-124.View/Download from: Publisher's site
Hemsley, B & Balandin, S 2004, 'Without AAC: The stories of unpaid carers of adults with cerebral palsy and complex communication needs in hospital', AAC: Augmentative and Alternative Communication, vol. 20, no. 4, pp. 243-258.View/Download from: Publisher's site
Many adults with cerebral palsy and complex communication needs rely upon the support of their unpaid carers when they are in hospital. In this paper, the authors present some of the findings of a larger qualitative study of the experiences of unpaid carers of hospitalized adults with cerebral palsy and complex communication needs who did not have access to their usual augmentative and alternative communication (AAC) systems. Drawing upon the stories of unpaid carers, communication issues associated with cerebral palsy and complex communication needs and the absence of AAC are discussed. Such information can be used to assist AAC specialists, hospital staff, and hospital policy developers to improve care provided to not only people with cerebral palsy and complex communication needs, but also to other people who are unable to speak in hospital. © 2004 Taylor & Francis Ltd.
Hemsley, B & Balandin, S 2003, 'Disability, dysphagia, and complex communication needs: Making room for communication in ethical decisions about dysphagia', International Journal of Speech-Language Pathology, vol. 5, no. 2, pp. 125-129.View/Download from: Publisher's site
Effective functional communication is important for successful management of dysphagia with individuals who have lifelong disability and complex communication needs (CCN).1CCN is a broad term used to describe functional outcome in communication according to skills and needs: "Some people have complex communication needs associated with a wide rangeof physical, sensory and environmental causes which restrict/limit their ability to participate independently in society. They and their communication partners may benefit from using Alternative or Augmentative Communication (AAC) methods either temporarily or permanently" (Balandin, 2002, p. 2). Many people with dysphagia have associated communication difficulties that may affect their ability to participate in their dysphagia management plan. Speech pathologists are well placed to ensure, wherever possible, that individuals with dysphagia not only have an appropriate dysphagia management plan but also have a functional communication system that will support their involvement in the planning and ongoing management process. In this article, the importance of a functional communication system for individuals with dysphagia is highlighted in relation to ethical decision making in dysphagia management. © 2003 Informa UK Ltd All rights reserved.
Balandin, S, Hemsley, B, Sigafoos, J, Green, V, Forbes, R, Taylor, C & Parmenter, T 2001, 'Communicating with Nurses: The Experiences of 10 Individuals with an Acquired Severe Communication Impairment', Brain Impairment, vol. 2, no. 2, pp. 109-118.View/Download from: Publisher's site
AbstractSuccessful communication is integral to quality health care and successful nursing practice. Ten people who had been in hospital in the 12 months prior to the study and who had no functional speech at that time were interviewed about their communication experiences with nurses. Overall, these individuals experienced difficulties, some of which appeared to be related to a lack of augmentative and alternative communication (AAC) resources and a lack of knowledge of AAC among nurses. In addition, the participants noted that nurses did not always have the time or the skills to communicate effectively with them. The participants suggested strategies to improve communication interactions between patients with no or limited functional speech and nurses. These strategies include pre-admission briefing and training nurses about effective strategies for communicating with patients who are unable to speak, including the use of augmentative and alternative communication systems.
Hemsley, B, Sigafoos, J, Balandin, S, Forbes, R, Taylor, C, Green, VA & Parmenter, T 2001, 'Nursing the patient with severe communication impairment', JOURNAL OF ADVANCED NURSING, vol. 35, no. 6, pp. 827-835.View/Download from: Publisher's site
Day, J, Levett-Jones, T & Kenny, R 2015, 'Communication' in Berman, A, Synder, S, Kozier, B, Erb, G, Levett-Jones, T, Dwyer, T, Hales, M, Harvey, N, Luxford, Y, Moxham, L, Park, T, Parker, B, Reid-Searl, K & Stanley, D (eds), Kozier and Erb's Fundamentals of Nursing Pack, Vols 1-3, Australian Edition, Pearson Australia Group, Sydney.
This third Australian edition has once again undergone a rigorous review and writing process.
Bryant, L, Hemsley, B, Bailey, B, Bluff, A, Nguyen, V, Stubbs, P, Barnett, D, Jacobs, C, Lucas, C & Power, E 2020, 'Opportunities for the Implementation of Immersive Virtual Reality in Rehabilitation', Wailea, Maui, HI.
Palmer, S & Hemsley, B 2018, 'Analysis of Three Twitter Hashtags for Discussion of Personal Electronic Health Records', PROCEEDINGS OF THE 5TH EUROPEAN CONFERENCE ON SOCIAL MEDIA (ECSM 2018), 5th European Conference on Social Media (ECSM), ACAD CONFERENCES LTD, Limerick Inst Technol, Limerick, IRELAND, pp. 236-245.
Kouzani, AZ, Adams, S, Oliver, R, Nguwi, YY, Hemsley, B & Balandin, S 2016, '3D printing of a pavlova', IEEE Region 10 Annual International Conference, Proceedings/TENCON, IEEE Region 10 Annual International Conference (TENCON), IEEE, Singapore, pp. 2281-2285.View/Download from: Publisher's site
© 2016 IEEE. 3D food printing is emerging as a high-resolution computer-aided-design and additive-manufacturing approach for producing food products. The benefits offered by 3D food printing include custom design and production of visually appealing foods, making of foods for people with special needs (e.g., people with swallowing difficulties), reduction in design and fabrication time and cost, and decrease in dependency on skilled personnel. This paper presents three-dimensional (3D) printing of a pavlova with chocolate garnish. Since the pavlova mixture mainly consists of eggwhite foam, its 3D printing is a challenging exercise. The materials and equipment used to 3D print the pavlova and the chocolate garnish are described. The preparation of meringue, design of pavlova, printing of pavlova, baking of pavlova, design of chocolate garnish, printing of chocolate garnish, and assembly of the pavlova are explained. The obtained results are presented and discussed, and the new opportunities that 3D food printing can offer are highlighted.
Hemsley, B 2012, 'Observing communication in hospital for adults with I/DD and little or no speech: Communication needs, methods and supports to improve care', JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, WILEY-BLACKWELL, pp. 761-761.
Hemsley, B, Davidson, B, Scarinci, N, Bastock, K, Lee, S, Kuek, M, Munro, K & Seedat, N 2012, 'Children with I/DD communicating in hospital: Needs and experiences reveal barriers and facilitators to better communication', JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, WILEY-BLACKWELL, pp. 694-694.
Hemsley, B, Worrall, E, Rigo, JK, O'Halloran, R & Hill, S 2012, 'Cochrane CAFE (Communication Access Framework and Evidence): A scoping study for future systematic reviews on communicatively vulnerable populations in healthcare settings', JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, WILEY-BLACKWELL, pp. 701-701.
Hemsley, B, Balandin, S & Worrall, L 2010, 'Communication in hospital: views of adults with ID, carers and nurses', JOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES, WILEY-BLACKWELL PUBLISHING, INC, pp. 477-477.
Anderson, K, Balandin, S, Clendon, S & Hemsley, B 2009, 'Friendships with children who use augmentative and alternative communication', JOURNAL OF POLICY AND PRACTICE IN INTELLECTUAL DISABILITIES, JOHN WILEY & SONS INC, pp. 92-92.
Anderson, K, Balandin, S, Clendon, S & Hemsley, B 2009, 'Validation and feedback in qualitative research with children', JOURNAL OF POLICY AND PRACTICE IN INTELLECTUAL DISABILITIES, JOHN WILEY & SONS INC, pp. 92-92.
Balandin, S, Hemsley, B, Sheppard, JJ & Hanley, L 2009, 'Impact of culture on mealtime management for adults with cerebral palsy and dysphagia', JOURNAL OF POLICY AND PRACTICE IN INTELLECTUAL DISABILITIES, JOHN WILEY & SONS INC, pp. 94-94.
Balandin, S, Hemsley, B, Sheppard, JJ & Hanley, L 2008, 'Dysphagia disorders Survey and SWAL-QOL: Mealtime assessment for adults with cerebral palsy', JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, WILEY-BLACKWELL, pp. 783-783.
Balandin, S, Hemsley, B, Sheppard, JJ & Hanley, L 2008, 'Experiences of mealtimes: Perspectives of older adults with physical disability', JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, WILEY-BLACKWELL, pp. 650-650.
Hemsley, B, Balandin, S & Togher, L 2008, 'Single parent fathers: Providing care and support in hospital to adults with disability and complex communication needs', JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, WILEY-BLACKWELL, pp. 724-724.
Hemsley, B, Balandin, S & Togher, L 2004, 'Narrative analysis of the hospital experience for older parents of people who cannot speak', JOURNAL OF AGING STUDIES, 12th World Congress of the International-Association-for-the-Scientific-Study-of-Intellectual-Disabilities, ELSEVIER SCIENCE INC, Montpellier, FRANCE, pp. 239-254.View/Download from: Publisher's site
Hemsley, B, Balandin, S & Sheard, C 2004, 'Older parent carers of adults with complex communication needs and their experiences in providing unpaid care in hospital', JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, BLACKWELL PUBLISHING LTD, pp. 425-425.
Cerebral Palsy Alliance
Cerebral Palsy League
Agency for Clinical Innovation
Digital Health Agency
Disability Advocacy Groups
International Society for Augmentative and Alternative Communication (ISAAC)