Two studies on Twitter networks and tweet content in relation to Amyotrophic Lateral Sclerosis (ALS): conversation, information, and ‘Diary of a Daily Life’

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

Motor Neurone Disease (MND) and Amyotrophic Lateral Sclerosis (ALS): Social Media Communication on Selected #MND and #ALS Tagged Tweets

In March-April 2016, 3288 original tweets tagged with #MND #ALS and other minor related tags (e.g., #cureALS #cureMND) were analysed using mixed quantitative and qualitative methods on tweet data and content. In this paper we outline the technical methods used in gathering and selecting relevant tweets for analysis, and present the results including inductive coding of content themes. The findings will inform (a) future social media research in relation to MND/ALS, (b) improved supports for people with MND/ALS and their families to use Twitter for information exchange, advocacy, and as a non-verbal form of communication, and (c) knowledge for MND/ALS service providers and philanthropic organisations on ways to engage with adults with MND/ALS in Twitter

“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)

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 support in using Twitter to meet their goals relating to participation in online forums and information exchange. Practitioners need to consider how their own social media skills might impact on service delivery and supporting these goals

Review of the literature on the use of social media by people with traumatic brain injury (TBI)

Purpose: To review the literature relating to use of social media by people with a traumatic brain injury (TBI), specifically its use for social engagement, information exchange or rehabilitation. Method: A systematic review with a qualitative meta-synthesis of content themes was conducted. In June 2014, 10 databases were searched for relevant, peer-reviewed research studies in English that related to both TBI and social media. Results: Sixteen studies met the inclusion criteria, with Facebook™ and Twitter™ being the most common social media represented in the included studies. Content analysis identified three major categories of meaning in relation to social media and TBI: (1) risks and benefits; (2) barriers and facilitators; and (3) purposes of use of social media. A greater emphasis was evident regarding potential risks and apparent barriers to social media use, with little focus on facilitators of successful use by people with TBI. Conclusions: Research to date reveals a range of benefits to the use of social media by people with TBI however there is little empirical research investigating its use. Further research focusing on ways to remove the barriers and increase facilitators for the use of social media by people with TBI is needed. Implications for Rehabilitation: Communication disabilities following traumatic brain injury (TBI) can be wide-ranging in scope and social isolation with loss of friendships after TBI is common. For many people, social media is rapidly becoming a usual part of everyday communication and its use has the potential to increase communication and social participation for people with TBI.There is emerging evidence and commentary regarding the perceived benefits and risks, barriers and facilitators and purposes of use of social media within the TBI population.Risks associated with using social media, and low accessibility of social media sites, form barriers to its use. Facilitators for social media use in people with TBI include training the person with TBI and their communication partners in ways to enjoy and use social media safely.There is minimal rigorous evaluation of social media use by people with TBI and scant information regarding social media use by people with communication disabilities after TBI. Further investigation is needed into the potential benefits of social media use on communication, social participation and social support with the aim of reducing social isolation in people with TBI

3D Printing of Food for People with Swallowing Difficulties

Dysphagia affects many people worldwide. Modifying foods to standard consistencies, and manual design and assembly of foods for the daily requirements of people with dysphagia is challenging. People with dysphagia may develop a dislike for pureed foods due to the unattractiveness of the appearance of the foods, the lack of variety in daily meals, and the diluted taste of meals. Three-dimensional (3D) food printing is emerging as a method for making foods for people with special mealtime needs. Very few efforts have been made to apply 3D food printing to improving the lives of people with special mealtime needs such as those with dysphagia. This paper presents the design and 3D printing of visually appetizing pureed foods for people with dysphagia with high consistency and repeatability. A tuna fish involving pureed tuna (protein), pureed pumpkin (fruit), and pureed beetroot (vegetable) is designed and then 3D printed. The steps involved in the design of tuna fish, preparation of purees, and printing of tuna fish are described. The obtained results are presented, and the findings of this research work are discussed

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

Setting an agenda for disability research in Australia: organisation-led and targeted consultation report

This report presents the results of the Phase 2b consultation conducted with 974 individuals from 21 non-government organisations (NGOs), including service providers and disabled peoples’ organisations (DPOs), the First Nations-focused National Disability Research Agenda survey and online focus groups and in-depth interviews with people with augmentative and alternative communication needs. It is part of multi-phase research agenda setting exercise that has been conducted to understand existing disability research in Australia and consult with the disability sector to understand their priorities for disability research. This research was funded by the National Disability Research Partnership (NDRP) to underpin their development of an agenda for Australian disability research over the next decade

Ethical issues in augmentative and alternative communication

In this "Ethical conversations" some common ethical issues and resources relevant to the provision of augmentative and alternative communication (AAC) or multi-modal communication in Australia are discussed. Guiding theoretical frameworks and Association documents are related to topical situations in speech pathology management in populations with complex communication needs. This paper is not intended as a review of the literature or as a guideline in relation to AAC practice which is forthcoming in the Association's Clinical Guideline on Augmentative and Alternative Communication. Rather, common issues that might confront clinicians in the dynamic field of AAC are discussed in the light of existing theoretical frameworks and Association documents. Bringing these issues to light at this time of rapid change in the field may help clinicians to arrive at good decisions to the benefit of people with complex communication needs and their families