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Background: There is growing recognition that communication can be affected in multiple sclerosis (MS) and can negatively impact relationships, employment and psychological well-being. Some persons with MS (PwMS) implement strategies to facilitate their communication; however, some do not. Most PwMS who report communication changes do not engage with speech-language pathology (SLP) services. This raises concerns that a large portion of communication changes associated with MS go under-recognized and unmanaged. Little is known about what PwMS want and need to facilitate effective communication. Aim: To explore what PwMS want and need to better manage their communication changes. Methods & Procedures: Three focus groups were conducted online using Zoom, with a total of 12 PwMS. Participants were an opportunistic sample of PwMS within Australia recruited via advertisements distributed to various MS organizations and clinics. Data were transcribed verbatim and analysed using thematic content analysis to provide a qualitative analysis of the data. Outcomes & Results: Two main themes emerged: (1) accessible knowledge and a holistic approach; and (2) partnerships. Specifically, the identified wants and needs of participants included: (1) assessment; (2) information; (3) raising awareness; (4) support groups; (5) a whole-person approach to intervention; (6) geographically and economically accessible and navigable services; (7) effective patient-physician interactions; and (8) a multidisciplinary team-based approach (e.g., SLP, psychology, neuropsychology, occupational therapy). Conclusions & Implications: This study identified a wide range of unmet wants and needs of PwMS related to communication changes. Participants wanted improved collaborative partnerships with healthcare professionals to better manage their communication changes. For example, healthcare professionals could ask PwMS about potential communication changes, provide education and make appropriate referrals. Education and information provision could focus on communication changes in MS, factors that trigger or exacerbate communication changes, impacts, self-management strategies, and available supports and services. Specific implications for clinical practice and future research are suggested in this paper, including ideas for patient education materials and content, suggestions for communication-specific screening and information that could be shared in patient-physician interactions, the development of guidelines to systematically screen, assess, manage and monitor communication changes in MS, and the design of evidence-based communication interventions for this clinical population. The results from this study can be used to guide the design of supports and services to help PwMS better manage communication changes, with the aim to reduce the negative impacts.

Although 3D food printing is expected to enable the creation of visually appealing pureed food for people with disability and dysphagia, little is known about the user experience in engaging with 3D food printing or the feasibility of use with populations who need texture-modified foods. The aim of this study was to explore the feasibility and usability of using domestic-scale 3D food printer as an assistive technology to print pureed food into attractive food shapes for people with dysphagia. In total, 16 participants engaged in the unfamiliar, novel process of using a domestic-scale 3D food printer (choosing, printing, tasting), designed for printing pureed food, and discussed their impressions in focus group or individual interviews. Overall, results demonstrated that informed experts who were novice users perceived the 3D food printing process to be fun but time consuming, and that 3D food printers might not yet be suitable for people with dysphagia or their supporters. Slow response time, lack of user feedback, scant detail on the appropriate recipes for the pureed food to create a successful print, and small font on the user panel interface were perceived as barriers to accessibility for people with disability and older people. Participants expected more interactive elements and feedback from the device, particularly in relation to resolving printer or user errors. This study will inform future usability trials and food safety research into 3D printed foods for people with disability and dysphagia. 3D food printers potentially have a role as an assistive technology in the preparation of texture-modified foods for people with disability and dysphagia. To increase feasibility, 3D food printers should be co-designed with people with disability and their supporters and health professionals working in the field of dysphagia and rehabilitation. Experts struggled to be able to print 3D pureed shapes owing to relatively low usability of the 3D food printer tested with problems using the interface and resolving problems in the print. 3D food printing is a fun and novel activity and may help to engage people with disability and dysphagia in making choices around the shape of the food to be printed. [ABSTRACT FROM AUTHOR]

The characteristics of friendships among children who use augmentative and alternative communication (AAC) are not well understood. Research on friendships among children without disabilities has identified similarity to each other as a key characteristic among friends. The aim of this study was to identify and describe the friendships between students using AAC and fellow students in Norwegian mainstream public schools. Participants were students using AAC in first to fourth class, fellow students, parents, and staff. Data were analysed using a constructive grounded theory approach. The participants provided diverse reports about the friendships, although all students using AAC reported having friendships at school. The friendships were described by parents and staff as superficial and students using AAC were seldom perceived as playmates by fellow students. The results indicated that friendships between students using AAC and fellow students were often unilateral. The results are discussed along with the implications for future research.

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.

Background: Although research on friendship among children without any reported disability is extensive, the investigation of the characteristics of friendship among children who are using augmentative and alternative communication (AAC) has received little attention. In this systematic literature review we investigated the current research on friendship between children who use AAC under 13 years of age. Method: Database searches were undertaken with English search terms. The review included 8 articles. Results: The results revealed that current research lacks systematic development of knowledge. Children using AAC have a different basis for establishing and developing friendship, due to restrictions in presence, participation, interaction, and communication with peers. Conclusions: Future research could pay closer attention to how children using AAC develop friendship, and how such relationships can be supported. This research could usefully incorporate the body of research on friendship among children without disability.

Objectives: To evaluate the effects of a program for training direct-care staff to implement an iPad®-based communication intervention with adults with developmental disability and severe communication impairment. Methods: Participants were 11 adults with developmental disability and 19 direct-care staff drawn from two day program settings. Direct-care staff completed training on how to implement the iPad®-based intervention. Staff were trained using PowerPoint® and video presentations, role play, practice, and feedback. A nonconcurrent multiple-baseline across settings design was used to evaluate the effects of the training program on fidelity of implementation by direct-care staff and the frequency of functional communicative acts by the adults with developmental disability. Eleven direct-care staff (five from Setting 1 and six from Setting 2) also completed a social validity questionnaire on the acceptability and usefulness of the training program. Results: After the training program, fidelity of implementation and frequency of functional communication increased. These gains were maintained at the follow-up in Setting 1, but not in Setting 2. Direct-care staff in both settings rated the training program as acceptable and useful. Conclusion: Direct-care staff learned to implement an iPad®-based communication intervention to increase functional communication in adults with developmental disability and severe communication impairment. The training program showed promise, but additional research is needed to validate its effectiveness.

Dysphagia in people with lifelong disabilities places a substantial burden on people with lifelong developmental disabilities, their carers, health and disability service, and society as a whole. Dysphagia in this population can be associated with respiratory illness, impaired nutrition, increased support needs, emergency hospital admissions with increased length of stay, readmission, and premature death. Research into better ways to prevent premature death in this population, including by choking, is an international priority. There is a wealth of information, guidance, resources, and training available on dysphagia management; fact sheets on modified foods, fluids, equipment, and tube feeds; yet to date this has been based upon "expert opinion," and there have been no studies investigating the impact of training on changing direct support workers' behaviours with regard to safety at mealtimes. Similarly, to date there are no reports of research naming dysphagia as a safety issue for residents with developmental disabilities in community settings. Therefore, there is little information available on the range of relevant factors contributing to dysphagia-related safety incidents. Such information is needed to inform policy, practice, and training to enhance the protection of adults with lifelong disabilities and dysphagia from preventable dysphagia-related respiratory illness or death, and to inform development of "resident safety frameworks" that reflect the "patient safety frameworks" pertaining to health care practices. This article calls for further research to properly understand the full range of factors influencing mealtime safety in people with lifelong disabilities and dysphagia. Improved documentation, practice systems, and services taking account of these factors could help paid and unpaid service providers as well as health services increase protection and reduce risk for people with dysphagia living in the community.

Background: This article presents an insight into the supported participation of older men with a lifelong disability in community Men's Sheds. We draw on a subsample of men from a 3-year study that explored how older people with a lifelong disability could be supported to transition to retirement from sheltered workshops. Method: Data arose from a range of sources -- both quantitative and qualitative -- and are structured here into a descriptive case study about how mentors at Men's Sheds provided support to older men (n = 9) with lifelong disability. Findings: Older men with disability want to enjoy an active retirement similar to their peers without disability. These men can join mainstream community groups such as Men's Sheds, provided they are offered just the right amount and type of support. Conclusion: Men's Sheds are largely untapped community resources where men with disability are welcome, provided that appropriate support is offered to the members of the shed.

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

Background: Social inclusion is a widely acknowledged goal; who is best positioned to provide support and how support is delivered are key questions. Using Active Mentoring training, members of community groups mentored a person with intellectual disability and supported their inclusion in that group. Methods: Interviews with 14 mentors explored their experiences of supporting a previously unknown person with intellectual disability to participate in their community group. Findings: The core theme was "No Different From Us." Mentors saw beyond the disability, they valued others, were community leaders, and had intrinsic qualities. With some basic orientation to the task, mentors were able to support the inclusion of their mentee in the group. Conclusion: Community members are willing to support people with intellectual disability to join their community groups. The Active Mentoring training is one way of harnessing the goodwill of community groups and their members to include people with intellectual disability to participate on an individual basis in community groups.

Background: The aim of this study was to explore the current status of end-of-life care and dying of people with intellectual disability based on the experiences of staff in community living services. Materials and Methods: Focus groups and individual interviews were conducted, guided by grounded theory methodology. Results: The current status of end-of-life care and dying comprised five key "issues": knowledge of dying, ethical values, the where of caring, the how of caring and post-death caring. These issues occurred in relationship with "partners", including the dying person, other clients, fellow staff, family, external health services and the coroner. Conclusions: End-of-life care represents a complex interaction between the care issues and the partners involved in care. Despite this complexity, staff were committed to the provision of end-of-life care. (Contains 1 note, 1 table, and 1 figure.)

The researchers aimed to discover what might prevent people with complex communication needs (CCNs) from making complaints if they experienced social exclusion in the retail environment. Qualitative research methods were used to gather data from two groups of participants: adults with CCN and retail customer service staff. Seven adults who used speech-generating devices (SGDs) and who shopped independently were interviewed about their perceptions of retail customer service communication. Nine retail customer service staff were interviewed about their communication with customers with disability. Analysis using grounded theory provided insights into experiences of people with CCN. All participants with CCN had experienced being ignored, patronised and excluded when shopping but faced barriers that prevented them from complaining. Those who did complain exhibited strong self-esteem. Participants with CCN experienced social exclusion because customer complaint mechanisms were inaccessible. Retailers and government agencies monitoring inclusion, as well as speech-language pathologists and disability advocates, place insufficient emphasis on retail communication as a vehicle for social inclusion. The researchers recommend strategies to strengthen self-advocacy by people with CCN and systemic changes to improve accessibility of complaints procedures in the retail sector. [ABSTRACT FROM AUTHOR]

The aim of this study was to explore regular teachers' perceptions and experiences of supports and obstacles to communicative interactions for students with multiple and severe disabilities (MSD). Five teachers of students with MSD participated in two in-depth interviews. Interview transcripts were analysed using content analysis. Transcripts were coded into categories, which were then grouped to yield content themes. Participants identified a broad range of themes, including: the complex needs of students with MSD, teachers' training and experience, communication education for teachers, the presence of peers without disabilities, the mainstream classroom, other staff in the school context, resources, infrastructure, the culture, size and geographical location of the school, the home context, support from specialist personnel outside the school, including collaboration with speech-language pathologists, the role of government departments, and broader societal factors. There are complex, systemic influences on access to communicative interactions for students with MSD in mainstream school settings. Inadequate systemic supports restrict communicative interactions between students with MSD and their teachers and peers without disabilities, and limit the involvement of students with MSD in mainstream classroom activities. Further research is required with teachers of students with MSD to substantiate these preliminary findings. (Contains 3 tables and 1 figure.)

In this study, we explored older parents' perceptions of their adult sons and daughters with autism in order to gain insights into how parents' beliefs about autism may influence their coping. Narrative analysis of in-depth interviews held with 16 parents aged 60 years and older of adults with autism revealed that these parents perceived that their son's or daughter's intelligence, sense of humour and social personality are blocked by autism. Adherence to these beliefs appeared to comprise important coping strategies that supported these parents in their caregiving roles by assisting them to maintain positive perceptions of their son or daughter with autism. Yet such beliefs also held costs for the parents, including reinforcing the belief that they need to regulate their own behaviour in order to realize the true son or daughter buried by autism. (Contains 1 table.)

Background: Concepts of inclusion and participation are at the core of both international and Norwegian policy for people with intellectual disability. The aim of this study was to identify senior centre users' views of the barriers and solutions to the inclusion of seniors with intellectual disability in community senior centres. Method: Thirty seniors without intellectual disability participated in one of four focus groups. The groups were recorded and transcribed verbatim. Data were analysed for themes using the constant comparative method of qualitative analysis. Results: Major themes included benefits, perceptions of people with intellectual disability, barriers and solutions to inclusion, need for support and need for information. Conclusions: The findings suggest that participants agreed that seniors with intellectual disability could benefit from being a senior centre user. Consideration must be given to this group's need for assistance, staff education, economic resources and ways to overcome negative community attitudes towards people with intellectual disability.

Background: Australia has few policies to support the transition of older people with intellectual disability from employment to retirement. This study aimed to identify the possibilities and barriers to retirement for older employees in supported employment services. Method: Five distinct participant groups discussed retirement in 6 separate focus group interviews: staff from disability accommodation (7) and employment services (7), members of mainstream activity programs for older people (4), family members (5), and supported employees (2 groups of 6 people). Results: Participants perceived retirement as a risk to the well-being and participation of employees. Participants were pessimistic about the availability of necessary support in retirement. The need for additional resources and skills was identified, but the utility of inclusion strategies was not recognised. Continued segregation through specialist programs or adaptation of existing employment programs was the most commonly suggested retirement option by staff and family members. Conclusion: Perceptions did not reflect the current policy imperatives of social participation. This poses an additional obstacle to conceptualising, planning, and supporting quality of life for older people with intellectual disability.

Loss and grief is a universal human experience, yet little is known about how older adults with a lifelong disability, such as cerebral palsy, and complex communication needs (CCN) experience loss and manage the grieving process. In-depth interviews were conducted with 20 Australian participants with cerebral palsy and CCN to determine the types of loss experienced by this group in their later years, sources of support available to manage loss, and the role of communication as a barrier or facilitator to a successful grieving process. The results are discussed in light of current grief and loss theory, and clinical implications and opportunities for further research are suggested. (Contains 1 table.)

Virtual worlds, such as Second Life[R], are the latest star in the online communication sky. Created by Linden Lab, Second Life is a three-dimensional environment that provides a context for avatars to communicate and socialise with other avatars in a variety of settings (Bell, 2009). Virtual worlds have been used to train people with intellectual disability in social skills. Parsons et al. (2006) conducted a study of training social skills within a specifically designed virtual environment for two adolescents with autism spectrum disorder. There are potentially many opportunities of both personal and social value for people with disability who engage in virtual worlds, as indicated in the study by Parsons et al. (2006). By exploring the possibilities offered through the use of virtual worlds, people with disability may experience the sense of actively participating as a member of a community, which may impact positively on their quality of life. At the same time, it is important to recognise and understand the challenges created by this technology and accept that not all people with lifelong disability will choose or be able to interact in a virtual world.

Purpose: To investigate the approaches of experienced speech-language pathologists (SLPs) to ethical reasoning and the processes they use to resolve ethical dilemmas. Method: Ten experienced SLPs participated in in-depth interviews. A narrative approach was used to guide participants' descriptions of how they resolved ethical dilemmas. Individual narrative transcriptions were analyzed by using the participant's words to develop an ethical story that described and interpreted their responses to dilemmas. Key concepts from individual stories were then coded into group themes to reflect participants' reasoning processes. Results: Five major themes reflected participants' approaches to ethical reasoning: (a) focusing on the well-being of the client, (b) fulfilling professional roles and responsibilities, (c) attending to professional relationships, (d) managing resources, and (e) integrating personal and professional values. SLPs demonstrated a range of ethical reasoning processes: applying bioethical principles, casuistry, and narrative reasoning when managing ethical dilemmas in the workplace. Conclusions: The results indicate that experienced SLPs adopted an integrated approach to ethical reasoning. They supported clients' rights to make health care choices. Bioethical principles, casuistry, and narrative reasoning provided useful frameworks for facilitating health professionals' application of codes of ethics to complex professional practice issues.

Background: Services employing staff to support people with disability usually provide training in a range of areas including communication and managing challenging behaviour. Given that such training can be costly and time-consuming, it is important to evaluate the evidence presented in support of such programs. Efficacy in clinical practice is measured using evidence-based practice. However, there is currently no model that is widely used to compare and evaluate training programs despite the large number of training programs reported each year. Method: Six studies published in the last decade that reported the outcomes of communication-based training and six that reported on the outcomes of challenging behaviour training were evaluated using the 4-level Kirkpatrick model. Results: Comparison of the levels of evidence is made for these 12 studies. Conclusion: The Kirkpatrick model provides one technique for appraisal of the evidence for any reported training program and could be used to evaluate whether a training program is likely to meet the needs and requirements of both the organisation implementing the training and the staff who will participate. (Contains 2 tables.)

Background: Changes in the swallowing capabilities of adults with cerebral palsy as they age may impact on their health, safety, and well-being. Method: Thirty-two adults with cerebral palsy aged between 30 and 69 years participated in in-depth interviews about their experiences of changes in their swallowing and related management of their mealtimes within the last two years. A constant comparative qualitative analysis of the interviews elucidated the changes they experienced. Results: Changes included increased coughing and choking, digestive or gastro-oesophageal symptoms, diet modification, loss of independence with psychosocial consequences. Participants reported unsatisfactory collaboration with service providers over mealtime management decisions and interventions. Conclusions: Adults with cerebral palsy may experience gradual changes in their swallowing and mealtime capabilities from as early as 30 years of age. Regular collaborative assessment and involvement of all stakeholders in decisions are important to facilitate compliance with recommendations, ongoing safety, and optimal well-being. (Contains 1 table.)

Background: The aim of this study was to assess the effectiveness of two communication interventions for preschool-aged children with autism. Method: Six typically developing peers were taught to implement peer-mediated naturalistic teaching, with and without a speech generating device (SGD), during play sessions with 3 classmates with autism in three preschools. Generalisation probes were conducted during mealtimes at the preschools. A multiple baseline design was used to assess the outcomes of the two intervention conditions. Results: All 3 children with autism increased their communicative behaviours immediately following the introduction of the two interventions, and generalised these increases to mealtime interactions with their peers. However, only 1 child maintained these increases in communication. Conclusion: These results provide preliminary evidence for the effectiveness of combining peer-mediated naturalistic teaching with the use of SGDs for preschool-aged children with autism. Suggestions for improving the maintenance of intervention effects are provided. (Contains 2 tables and 1 figure.)

Background: The aim of this study was to explore the views of hospital and disability service staff on the roles and needs of family carers of adults with cerebral palsy (CP) and complex communication needs (CCN) in hospital. Method: We conducted a focus group with six hospital and disability service staff, analysed the content themes of the group discussion, and verified the analysis with participants. Results: Participants highlighted the family carers' expertise and roles in emotional and communication support, advocacy, and providing information. They acknowledged that there is a gap between the ideal of hospital staff being able to provide all necessary care to the patient with CP, and the reality of hospital staff relying upon family carers for their expertise and provision of patient care. Conclusions: Hospital and disability staff do not expect family carers to replace the nurse in caring for the patient with CP and CCN in hospital. Nevertheless, family carers provide valuable support in hospital. This includes support with communication, advocacy, protection, information exchange, direct care, and emotional support. Family carers with a high level of expertise in providing care may need support in adapting to the culture of care on the ward and in transferring their roles and expertise in direct care to hospital staff. In addition, they need emotional and practical support through the stressful experience of having a family member hospitalised. (Contains 1 table.)