Managing communication changes in persons with multiple sclerosis: Findings from qualitative focus groups.

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. WHAT THIS PAPER ADDS: What is already known on this subject PwMS can experience communication changes across a range of domains, including speech, voice, fluency, expressive and receptive language, and cognitive-linguistic functions. These changes can have profound and far-reaching negative impacts on educational and vocational outcomes, social participation, relationships, psychological well-being, and quality of life. Most PwMS who report communication changes do not engage with SLP services. There has been little research exploring what PwMS want and need to help manage their communication changes. What this paper adds to the existing knowledge This research is the first study of its kind that sets out specifically to explore what PwMS want and need to better manage their communication changes. This study increases our understanding of, and provides valuable insights into, the specific types of supports and services PwMS desire to access, and the partnerships and kinds of interactions PwMS dream of having with healthcare professionals to manage these changes. This information can facilitate the development of future interventions to manage communication changes in MS. What are the potential or actual clinical implications of this work? PwMS wanted healthcare professionals to ask about potential communication changes, provide education and make appropriate referrals. When providing education and information on communication changes in MS, healthcare professionals should focus on covering symptoms, triggers, impacts, self-management strategies, and available supports and services. There is a timely need to develop guidelines and interventions to manage communication changes in MS to reduce their negative impacts.

"I always walked out with an empty purse." Older adults' engagement with electronic gambling machines in Victoria, Australia.

ISSUE ADDRESSED: Older adults are at an increased risk of experiencing gambling harm, which may be due to their use of high-intensity gambling products such as electronic gambling machines (EGMs). However, little research has explored the motivations behind older adults' engagement with EGMs, their understanding of the structural characteristics of EGMs, or their perceptions of risk associated with EGM gambling. This paper aims to address this gap in the literature. METHODS: Focus groups were conducted in Melbourne, Australia with n = 126 adults aged 55+, who had attended a club or pub in the last 12 months. Topics included EGM attitudes and behaviours, structural characteristics of EGMs, and the potential risks associated with EGM gambling. Thematic analysis was used to interpret the data. RESULTS: For most participants, EGM gambling was secondary to their participation in other activities available within venues. Participants identified structural characteristics of EGMs; however, there were some misconceptions about how EGMs operated, including how or why machines paid out. Most participants perceived that they were not at risk of gambling harm because they engaged in "responsible" gambling practices such as setting limits. CONCLUSIONS: Older adults often engaged in EGM gambling because of its availability in community-based venues. Older adults' perception that they are implementing responsible gambling practices may be increasing their susceptibility to harm. SO WHAT?: There is a need to reduce the availability and accessibility of EGMs in community settings and develop public education programs that are tailored to the needs of older adults.

Death by Choking or Dysphagia: A Review of Coronial Findings (Australia and Canada): A Picture of Preventable Death, Non-adherence to Written Recommendations, and Lack of Appropriate Supervision.

Choking and aspiration pneumonia are a leading cause of preventable death for people in residential care in Australia. In Victoria, in 2018-2019, 59% of deaths of persons in residential care that were referred to the coroner were from aspiration pneumonia. In 2016-2017, in New South Wales, the leading cause of death in people with disability living in residential care was pneumonitis caused by solids and fluids in the lungs. Such deaths are closely linked with swallowing problems (dysphagia) and people with cognitive impairments and multiple health issues, including mental health issues, are most at risk. This commentary focuses on coronial inquests where coroners' findings have identified dysphagia or aspiration pneumonia as a cause of death or a contributor to a person's death. It also includes a summary of the recommendations by coroners which highlight processes that should be implemented to improve the safety of people with dysphagia.

Weighing up the risks and benefits of community gambling venues as recreational spaces for people with lifelong disability.

BACKGROUND: Community gambling venues (pubs and clubs) are commonly associated with leisure and recreational options in Australian communities. While these venues offer a range of activities and facilities, including social opportunities, sporting facilities, live entertainment, they also contain gambling products that are known to cause significant harm to individuals, their families and communities. Although researchers have explored how adults and children engage with these venues, there is limited understanding about the potential risks and benefits of these venues for people with lifelong disability. METHODS: Semi structured interviews were conducted with nineteen people aged 20-70 years with lifelong disability (includes in this context intellectual disability, autism spectrum disorder, ADHD, and learning disability), predominately intellectual disability. The interviews occurred in a large Australian city and explored interviewees' experiences and attitudes towards pubs and clubs. Using a range of visual prompts (if needed), participants were asked to describe their engagement in different activities offered within the venue. Interviews were audio-recorded and transcribed, with a thematic analysis used to identify themes across the group. RESULTS: Most participants attended venues with family, friends, and supporters, with a few attending on their own. Participants described socialising in the venue, going for reduced price meals, and attended for a range of activities including recreational activities, live entertainment and sport. Some participants also valued being a member of venues, and the interactions with staff members. While participants were cautious about the consumption of alcohol, most had gambled, particularly on electronic gambling machines (EGMs, pokies, or slots). Some participants stated that they had experienced problems with gambling. CONCLUSIONS: While many people with lifelong disability have positive experiences in pubs and clubs, some are vulnerable to the harms associated with risky products such as gambling within the venue. While it is important to acknowledge the positives associated with recreational facilities and encourage engagement in leisure activities for people with lifelong disability, further consideration is needed to ensure people are informed and protected from the harms associated with gambling and other products that are provided within these spaces.

A content analysis of documentation on communication disability in hospital progress notes: diagnosis, function, and patient safety.

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.

Health Information Infrastructure for People with Intellectual and Developmental Disabilities (I/DD) Living in Supported Accommodation: Communication, Co-Ordination and Integration of Health Information.

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.

A call for innovative social media research in the field of augmentative and alternative communication.

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.

The stories of older parents of adult sons and daughters with autism: a balancing act.

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.

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.

Speech-Language Pathologists' Perceptions of Implementing Communication Intervention with Students with Multiple and Severe Disabilities.

The aim of the present study was to explore speech-language pathologists' (SLPs) perceptions and experiences of factors influencing the implementation of communication interventions for students with multiple and severe disabilities. Eight SLPs in New South Wales, Australia, participated in individual interviews and a focus group. Interview transcripts were scrutinized using thematic analysis. Transcripts were coded into categories, which were then grouped to yield themes. Participants identified a broad range of themes, including SLPs' experience and skills, professional development, and collaboration with teachers and families; as well as home and school contexts, the role of government departments, and broader societal factors. These complex influences suggest that systemic supports may be required at multiple levels in order to increase the likelihood of effective implementation of communication interventions for students with multiple and severe disabilities.

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.

Mentors' experiences of using the Active Mentoring model to support older adults with intellectual disability to participate in community groups.

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.

Teaching multi-step requesting and social communication to two children with autism spectrum disorders with three AAC options.

The present study involved comparing the acquisition of multi-step requesting and social communication across three AAC options: manual signing (MS), picture exchange (PE), and speech-generating devices (SGDs). Preference for each option was also assessed. The participants were two children with autism spectrum disorders (ASD) who had previously been taught to use each option to request preferred items. Intervention was implemented in an alternating-treatments design. During baseline, participants demonstrated low levels of correct communicative responding. With intervention, both participants learned the target responses (two- and three-step requesting responses, greetings, answering questions, and social etiquette responses) to varying levels of proficiency with each communication option. One participant demonstrated a preference for using the SGD and the other preferred PE. The importance of examining preferences for using one AAC option over others is discussed.

Self-advocacy with retailers by people with complex communication needs.

PURPOSE: 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. METHOD: 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. RESULT: 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. CONCLUSION: 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.

Going thirsty for the turtles: Plastic straw bans, people with swallowing disability, and Sustainable Development Goal 14, Life Below Water.

PURPOSE: This paper relates to the Sustainable Development Goal (SDG) Life Below Water (SDG 14) and the need to consider Better Health and Well-Being (SDG 3) in interventions designed to reduce plastic straw waste. The aim of this paper is to explore the competing demands of saving the world's oceans and sea life from plastic straw waste, and simultaneously meeting the health and social needs of people with swallowing or physical disability who use plastic straws for drinking. RESULT: In order to meet both SDG 14 and not compromise SDG 3 there is a need for collaborative and interdisciplinary, person-centred, inclusive innovation approaches to finding suitable and acceptable alternatives to plastic straws. Many people with swallowing disability will need a durable, flexible, and single-use straw that is resilient enough to withstand jaw closure without breaking. Co-design considerations include the alternative straw being (a) soft and flexible so as not to damage the teeth of people who bite to stabilise the jaw or who have a bite reflex; (b) suitable for both hot and cold drinks; (c) flexible for angling to the mouth; (d) readily, thoroughly and easily cleaned to a high standard of hygiene; (e) widely available for low or no cost wherever drinks are served; and (f) safe for people to use while reducing impact on the environment and being sustainable. CONCLUSION: Plastic straws are an assistive technology critical for the social inclusion of people with disability. In an inclusive society, reaching a policy position on the provision of plastic straws must include seeking out and listening to the voices of people with sensory, intellectual, physical, or multiple disabilities who use plastic straws.

Craving inclusion: a systematic review on the experiences and needs of people with disability eating out.

Purpose: To systematically review the research relating to views and experiences of people with disability eating out in cafés, restaurants, and other settings; and identify factors that impede or enhance accessibility of eating out experiences, inform future inclusive research, and guide policy development.Materials and Methods: This study involved systematic search and review procedures with qualitative metasynthesis of the barriers to and facilitators for participation and inclusion in eating/dining-out activities. In total, 36 studies were included.Results: Most studies reviewed related to people with physical or sensory disability eating out, with few studies examining the dining experiences of adults with intellectual or developmental disability, swallowing disability, or communication disability. People with disability encountered negative attitudes and problems with physical and communicative access to the venue. Staff lacked knowledge of disability. Improvements in the design of dining spaces, consultation with the disability community, and staff training are needed.Conclusion: People with disability may need support for inclusion in eating out activities, as they encounter a range of barriers to eating out. Further research within and across both a wide range of populations with disability and eating out settings could guide policy and practice and help develop training for hospitality staff.

Some people with disability require support for increased self-determination and self-advocacy to access eating out experiences satisfactorily.Goals and strategies to increase access and participation in eating out activities for people with disability should include attention to the environment and hospitality venues and to staff training.Rehabilitation professionals have a role in training hospitality staff about disability access and inclusion in eating out activities.To enhance community inclusion and participation, rehabilitation professionals could focus more on the skills and strategies needed for people with disability to participate in eating out activities.Rehabilitation professionals could implement a range of facilitators that might strengthen participation in eating out activities for people with disability.

Nursing the patient with complex communication needs: time as a barrier and a facilitator to successful communication in hospital.

BACKGROUND: Effective nurse-patient communication is an essential aspect of health care. Time to communicate, however, is limited and subject to workload demands. Little is known about how nurses manage this 'lack of time' when caring for patients with developmental disability and complex communication needs, who typically communicate at a slow rate. AIM: The aim of this study was to investigate nurses' expressed concepts of 'time' in stories about communicating with patients with developmental disability and complex communication needs in hospital. METHOD: In 2009, 15 hospital nurses from a range of wards in two metropolitan hospitals participated in interviews about barriers to and strategies for successful communication with patients with developmental disability and complex communication needs in hospital. The data were analysed using narrative inquiry methodology and the stories verified with the participants. RESULTS: Nurses identified 'time' as a barrier and a facilitator to successful communication. Time as a barrier was related thematically to avoiding direct communication and preferring that family or paid carers communicated on behalf of the patient. Time as a facilitator was related to valuing communication, investing extra time, and to applying a range of adaptive communication strategies to establish successful communication. CONCLUSIONS: Time is perceived by nurses as both an enemy and friend for improving communication. Nurses who perceive that communication takes too long may avoid communication and miss opportunities to improve communication through increased familiarity with the person's communication methods. Those who take time to communicate narrate applying a range of strategies to achieve success in basic needs communication.

End-of-life care and dying: issues raised by staff supporting older people with intellectual disability in community living services.

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.

The speech-generating device (SGD) mentoring program: training adults who use an SGD to mentor.

Mentoring in speech-generating device (SGD) use by adults who use SGDs offers the potential to improve new device learners' linguistic competence. This paper forms part of a larger study of mentoring among people who use SGDs. This paper investigates the effects of training adults who use SGDs in interaction strategies to enable them to fulfil a mentoring role. Mentors were taught to use open-ended questions, expansions, and recast sentences. Three mentors, aged 23-, 31-, and 54-years-old; and three mentees, aged 13-, 14-, and 32-years-old, participated in this study. A nonconcurrent multiple-baseline-across-participants design was used to assess the outcomes. Following the interaction strategies training, an increase in the number of strategies used in mentoring sessions occurred across all three mentors. These results provide preliminary evidence of SGD mentor training success. The SGD mentors learned the strategies and used them in mentoring sessions.