Tweet reach : a research protocol for using Twitter to increase information exchange in people with communication disabilities

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. In this paper, three studies are proposed to investigate the use of Twitter by people with communication disabilities.

Communicating with nurses: the experiences of 10 individuals with an acquired severe communication impairment

Successful 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.

Nursing the patient with severe communication impairment

Background. Effective communication with patients is critical to effective nursing practice. Surprisingly, there is little information on nurses' experiences in caring for patients who are unable to speak. Purpose and method. This study provides descriptive information from interviews with 20 nurses who cared for patients with severe communication impairment. The interview protocol explored positive and negative experiences of nursing patients with severe communication impairment. Frequency counts and descriptive analyses were conducted to identify the major themes emerging from the interviews. Results. The results suggest that nurse-patient communication is difficult when the patient has severe communication impairment, although some nurses discovered effective strategies to facilitate communication with such patients. Many of the difficulties could be viewed as a breakdown in understanding arising from the lack of a readily interpretable communication system that could be used by nurse and patient. Conclusions. The results suggest a need for training nurses in the use of alternative modes of communication. Nurses also need access to a variety of simple augmentative communication devices for use with patients who are unable to speak. Finally, nurses should collaborate with speech pathologists on the development of preadmission information and bedside training for people who are admitted to hospital with severe communication impairment.

A metasynthesis of patient-provider communication in hospital for patients with severe communication disabilities: informing new translational research

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.

Facilitated communication and authorship: a systematic review

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.

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.

Personal Storytelling : Using Natural Language Generation for Children with Complex Communication Needs, in the Wild...

Acknowledgements The authors thank the children, their parents and school staff, who participated in this research, and who so willingly gave us their time, help and support. They also thank Steven Knox and Alan Clelland for their work on programming the mobile phone application. Additional thanks to DynaVox Inc. for supplying the Vmax communication devices to run our system on and Sensory Software Ltd for supplying us with their AAC software. This research was supported by the Research Council UKs Digittal Economy Programme and EPSRC (Grant numbers EP/F067151/1, EP/F066880/1, EP/E011764/1, EP/H022376/1, and EP/H022570 /1).