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Let’s stay in touch! Remote communication for people with communicative and cognitive disabilities
Abstract and Figures
Introduction: Being able to use remote communication through digital channels is a prerequisite for participation in contemporary society, but some people have difficulties in accessing it. Aim: The overall aim was to explore and describe remote communication for people with communicative and cognitive disabilities. This thesis explored remote communication in relation to self-determination and participation from users’, professionals’ and support persons’ perspectives. Methods: This thesis is based on four studies: three qualitative (I, III, IV) and a mixed method (II). For study I, semi-structured interviews were used, and they were analysed by content analysis. In study II, semi-structured interviews were combined with Talking Mats, a pictorial communication tool, where qualitative data for systematic text condensation and ordinal scale data were obtained. Study III and IV’s focus groups were analysed by focus group analysis. Results: In study I, professionals described how text messaging with both pictures and speech could increase independence and participation, and how individual assessments and user-friendly technology were important. For study II, people with communicative and cognitive disabilities described how remote communication related to self-determination. Having a choice between types of remote communication and levels of independence was important, and technological limitations forced them to find their own strategies to communicate. Support persons discussed how remote communication enabled users to have more control and feel safer while increasing self-determination and participation for study III. The results suggest communicative rights were not met, and there was a need for better provisions of technology and support. In the final study, support persons discussed what enhanced and hindered remote communication. Conclusion: This thesis contributes to the understanding of how people with communication difficulties need access to remote communication to have control, be self-determined and participate in society. It provides knowledge on the needed improvements for access, support and development to improve remote communication use.
Keywords: Augmentative and alternative communication, assistive technology, remote communication, digital communication, self-determination, participation, qualitative, Talking Mats, support persons, cognitive and communication disabilities
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Supplementary resource (1)
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Purpose: This study examined speech and language pathologists’ (SLPs’) perceptions and practices of communication partner training with high-tech speech generating devices (SGDs).
Method: Fifteen SLPs were recruited throughout Sweden. The SLPs answered a study-specific questionnaire on communication partner training in relation to communication partners to children with severe cerebral palsy and intellectual disability. The results were analysed with descriptive statistics (closed-ended questions, responses on Likert scales) and content analysis (open-ended question) using ICF-CY.
Results: Twelve SLPs completed the survey. Half had no or one training session with communication partners in the last year. One-third never used documents for goal-setting. Half seldom or never taught communication partner strategies. Three quarters only used verbal instructions. The main obstacles were environmental factors.
Conclusions: This study contributes valuable knowledge about high-tech SGD interventions targeting communication partners. The high-tech SGD intervention may benefit from goal-setting, extended number of training sessions and a range of instructional approaches.
• Implications for Rehabilitation
• Speech and language pathologist (SLPs) reported that children with severe cerebral palsy and intellectual disability (SSPI) can benefit from speech generating device (SGD) communication.
• Communication partner strategies and goal-setting supports the development of communication with SGD. SLPs seldom taught stakeholder communication partner strategies and instruments for goal-setting.
• Because stakeholders may vary in their way of learning SLPs need to use a variety of instructional approaches. SLPs used few instructional approaches, typically verbal information.
Since its inception in 1985, the AAC journal has been publishing scientific articles related to the field of augmentative and alternative communication (AAC) that (a) report research concerning assessment, treatment, rehabilitation, and education of people who use or have the potential to use AAC systems and (b) cover theory, technology, and systems development relevant to AAC. The journal has maintained a consistent focus on the science and practice of AAC while also advancing in varied and impressive ways. Among the many developments apparent in AAC over the years, methodological advancements emerge as pivotal within the evolution of the science of AAC. This report examines the state of the science in behavioral AAC research with specific regard to changes and opportunities in research methodology. Illustrations from articles published in Volume 1 (1985) and Volume 32 (2016) of AAC are used in this paper to frame commentary on (a) contextual consideration in conducting AAC research, (b) types of research design, (c) considerations of procedural rigor, and (d) future methodological directions and resources. If the AAC field is to meet the goal of ensuring that all individuals with complex communication needs achieve their full potential, meaningful questions must be posed to address key problems, and rigorous scientific methods must be employed to answer these questions.
Purpose: Articles 19, 26 and 27 of the Universal Declaration of Human Rights and Articles 4, 9 and 21 of the Convention on the Rights of Persons with Disabilities promote the human rights of communication, education, use of technology and access to information. Social media is an important form of online communication, and Twitter increases users’ visibility, influence and reach online. The aim of this sociotechnical research was to determine the impact of teaching three people who use Augmentative and Alternative Communication (AAC) to use Twitter.
Method: Three participants were trained in ways of using Twitter strategically. Data collected from participants’ Twitter profiles were examined to determine the impact of training on Twitter follower count, frequency of tweeting, tweet content and the development of social networks. Data were also examined using (1) KH Coder software analysis and visualisation of co-occurring networks in the text data, based on word frequencies; and (2) Gephi software analysis to show the Twitter network for each participant.
Result: Two participants showed an improvement in Twitter skills and strategies.
Conclusions: Twitter can be used to improve social connectedness of people who use AAC, and should not be overlooked in relation to communication rights.
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.
With the mission in mind to articulate an approach that is scientifically competent to meet the appeals from health care, education, social work, and other disciplines, the theme of this article is to rethink the essential ideas of phenomenological and hermeneutical research approaches, by exploring their philosophical underpinnings and especially the essential ontological idea of inseparability. We examine the fissure between approaches that favor description or interpretation and explore the arguments for a third approach that has the power to close the false epistemological methodological gap.
Purpose
To establish the effectiveness of Talking Mats™ (TM) in evaluating service users’ experiences, and explore their views of the implementation of person-centred active support (PCAS).
Design/methodology/approach
A mixed-methods study, employing qualitative interviewing and observational measures.
Findings
Both qualitative and quantitative measures indicated inconsistent implementation of PCAS. It was possible to effectively gain participants’ views on positive and negative aspects of quality of support and quality of life, using TM, across three themes, My life, My support, and Self-determination.
Research limitations/implications
Generalisability of the research may be limited due to the sample, and the potential for researcher and interview bias is acknowledged.
Practical implications
Talking Mats provides a mechanism that may facilitate the inclusion of the views and experiences of people with intellectual and developmental disability (PWIDD) who have limited verbal skills. Their views need to be reflected in adaptions made to PCAS.
Originality/value
This study included a population who are often left out of qualitative research because of the methodologies adopted. It also included older PWIDD, where there has been less research about the effectiveness of TM.
Method:
Two asynchronous online focus groups were conducted with 16 rehabilitation professionals to identify the factors they perceived to influence the selection and provision of assistive technology to young children within the South African context.
Data analysis:
A process of deductive thematic analysis was followed by inductive analysis of the data. Components of the Assistive Technology Device Selection Framework were used as themes to guide the deductive analysis, followed by inductive analysis to create subthemes.
Discussion:
The important role of the professional was highlighted in negotiating all the factors to consider in the assistive technology selection and provision process. Adaptation of the Assistive Technology Device Selection Framework is suggested in order to facilitate application to low resourced contexts, such as South Africa. Implications for rehabilitation Assistive technology selection is a complex process with factors pertaining to the users (child and family) of the assistive technology, as well as the rehabilitation professional recommending the assistive technology influencing the process. Although it may be an important factor, the availability of financial resources to purchase assistive technology is not the only determining factor in providing appropriate assistive technology to young children in contexts with limited resources. Formalized support, such as reflective supervision or mentorship programs should be facilitated and utilized by recommending professionals. Home and school visits during assessment ensure a good match between assistive technology and users within the particular context. Facilitating the availability of assistive technology for trial during assessment and/or for a period afterwards will increase the likelihood that appropriate recommendations for assistive technology are made.
The service delivery process (SDP) of assistive technology device (ATD) is attracting interest, as the provision of ATD is critical for the independence and participation in society of individuals with disabilities. The purpose of the current study was to investigate what impact the SDP has on satisfaction with ATDs in individuals with disabilities in relation to everyday activities. A systematic literature review was conducted, which resulted in 53 articles included. The results showed that there are factors in almost all the different steps of the SDP that affect the satisfaction with of the devices, which can lead to underutilization and abandonment of ATDs. Only a few studies have been conducted with a design robust enough to generalize the results, therefore more research is needed. Therefore the conclusion is that the evidence that the SDP as a whole contributes to the satisfaction with and usability of ATDs in individuals with disability in relation to achieving the desired goals of participation in everyday activities for the articles included must be deemed as moderate. A client-centred approach in the process is advocated, and was found to be an important factor for an effective SDP and satisfied users.
Background:
This study sought to gain an understanding of the experiences and perspectives of assistive technology from different stakeholders in technology adoption, in the New Zealand context.
Methods:
A focus group was held with individuals with cerebral palsy (n = 5), service providers (n = 4), caregivers (n = 3) and a biomechanical engineer. The data recordings from the focus group were transcribed and coded using thematic analysis.
Results:
Themes emerged around barriers imposed by the assessment process and training in assistive technology procedures, the influence of family members, the environment that assistive technology is used in, and psychosocial aspects of being able to participate and integrate into society.
Conclusion:
The results are similar to other literature, suggesting new innovations and changes are in dire need, to improve assistive technology experiences for all stakeholders. Implications for Research Service providers for assistive technology desire more effective training and support of existing and emerging technologies. Although the set procedure for acquiring assistive technology in New Zealand is comprehensive, incorporating multiple perspectives, it is difficult to follow through in practice. More innovative procedures are needed. The movement of Universal Design is significantly improving the perception of individuals with disabilities, and has enabled greater social inclusion. More assistive technology developers need to ensure that they incorporate these principles in their design process.