Lessons for the AAC field: a tribute to Dr. David Beukelman.

On February 5, 2022, the field of augmentative and alternative communication (AAC) lost a giant when Dr. David "Dave" Beukelman passed away. As the readership of this journal is aware, Dave was one of the principal founders of the AAC field and devoted his career to providing a voice to those without one. Before AAC became a field, people who could not talk were invisible or seldom noticed, unless they were in the way. For more than 40 years, he was a catalyst for change in AAC clinical practice, research, dissemination, teaching, and public policy development. This tribute aims to honor Dave's lifelong mission of serving others by sharing some of his most timeless and valued lessons. Each lesson begins with one of Dave's most enduring quotes that is then followed by a brief synopsis of the lesson Dave hoped to convey.

Perceptions regarding communicative participation in individuals receiving botulinum toxin injections for laryngeal dystonia.

BACKGROUND: Laryngeal dystonia (LD), or spasmodic dysphonia (SD), is a neurological disorder characterized by focal dystonia or involuntary spasms of the laryngeal muscles and associated voice symptoms. It is typically treated with injection of botulinum toxin (BoNT) that weakens the affected muscles. AIMS: The primary purpose of this qualitative study was to explore participants' experience of living with LD and BoNT treatment. The secondary purpose was to examine those experiences as a function of participants' scores on the Communicative Participation Item Bank (CPIB). Results will enhance our understanding of restrictions in communicative participation, assist in planning intervention targeting these restrictions and aid in clinical interpretation of CPIB scores. METHODS & PROCEDURES: Semi-structured interviews using a phenomenological tradition and focusing on BoNT treatment and communicative participation were conducted with 26 people with LD who are on established BoNT treatment regimens. Interviews were recorded, transcribed, coded and analysed inductively. Participants were categorized by CPIB scores into groups ranging from none to extensive participation restrictions. Both self- and expert ratings of voice were obtained. OUTCOMES & RESULTS: Participants with different levels of CPIB scores had different experiences related to communicative participation in the context of BoNT treatment. These differences were organized into the following topics: BoNT and voice; attitudes toward participation; coping strategies; and advice. For all participants except those in the least restricted and most restricted groups, expert ratings of voice did not relate to CPIB scores. CONCLUSIONS & IMPLICATIONS: Although most participants report improved voice with BoNT treatment, many participants experienced lingering restrictions in communicative participation, some to a severe extent. Participants reported coping with these restrictions in many ways; some of these strategies were more successful than others. Those with restricted participation recommended more support for daily life and the emotional toll of LD, as well as support for family members. This support might be offered by speech-language pathologists. WHAT THIS PAPER ADDS: What is already known on the subject Participants with different levels of CPIB scores had different experiences related to communicative participation in the context of BoNT treatment. What this study adds to the existing knowledge Although most participants report improved voice with BoNT treatment, many participants experienced lingering restrictions in communicative participation, some to a severe extent. What are the potential or actual clinical implications of this work? SLP services that take a participation-focused approach to intervention and use multi-factorial approaches to help clients maximize their life participation in the context of LD are well within the SLP scope of practice. SLPs can help clients find and use their optimal voices within the constraints of the dystonia and BoNT effects.

The Communicative Participation Item Bank: Evaluating, and Reevaluating, Its Use across Communication Disorders in Adults.

Patient-reported outcomes (PROs) are essential in patient-centered, evidence-based practice in speech-language pathology. PROs respect individuals who live with communication disorders as key stakeholders providing a critically unique perspective on consequences of communication disorders, and whether interventions bring about meaningful changes. Some PROs focus on specific communication symptoms such as voice or language symptom severity, while others focus on broader constructs such as quality of life. Many PROs target specific diagnostic groups. This article presents the Communicative Participation Item Bank (CPIB), a PRO that measures communicative participation restrictions. The CPIB was based on the concept of participation, or engagement in life situations, as defined in the World Health Organization's International Classification of Functioning, Disability, and Health. It was designed to be relevant for adults across different communication disorders to facilitate clinical and research activities that may involve either comparing or aggregating data across communication disorders. The CPIB follows current PRO development protocols including systematic guidance from stakeholders through cognitive interviews, and the measurement methods of Item Response Theory that allow precise and adaptive assessment. This article reviews use of the CPIB across different diagnostic groups, and identifies needs for future efforts to expand the relevance of the CPIB further.

Swallowing with Noninvasive Positive-Pressure Ventilation (NPPV) in Individuals with Muscular Dystrophy: A Qualitative Analysis.

The purpose of the study is to describe experiences of swallowing with two forms of noninvasive positive-pressure ventilation (NPPV): mouthpiece NPPV (M-NPPV) and nasal bilevel positive airway pressure (BPAP) in people with muscular dystrophy. Ten men (ages 22-42 years; M = 29.3; SD = 7.1) with muscular dystrophy (9 with Duchenne's; 1 with Becker's) completed the Eating Assessment Tool (EAT-10; Ann Otol Rhinol Laryngol 117(12):919-924 [33]) and took part in semi-structured interviews. The interviews were audio recorded, transcribed, and verified. Phenomenological qualitative research methods were used to code (Dedoose.com) and develop themes. All participants affirmed dysphagia symptoms via responses on the EAT-10 (M = 11.3; SD = 6.38; Range = 3-22) and reported eating and drinking with M-NPPV and, to a lesser extent, nasal BPAP. Analysis of interview data revealed three primary themes: (1) M-NPPV improves the eating/drinking experience: Most indicated that using M-NPPV reduced swallowing-related dyspnea. (2) NPPV affects breathing-swallowing coordination: Participants described challenges and compensations in coordinating swallowing with ventilator-delivered inspirations, and that the time needed to chew solid foods between ventilator breaths may lead to dyspnea and fatigue. (3) M-NPPV aids cough effectiveness: Participants described improved cough strength following large M-NPPV delivered inspirations (with or without breath stacking). Although breathing-swallowing coordination is challenging with NPPV, participants reported that eating and drinking is more comfortable than when not using it. Overall, eating and drinking with NPPV delivered via a mouthpiece is preferred and is likely safer for swallowing than with nasal BPAP. M-NPPV (but not nasal BPAP) is reported to improve cough effectiveness, an important pulmonary defense in this population.

Factors associated with disease self-efficacy in individuals aging with a disability.

Self-management of a disability consists of treatment adherence, obtaining information about the disease and treatment options, caring for oneself, participating in decisions, and maintaining social relationships and emotional balance. Understanding and measuring an individual's beliefs about their ability to successfully self-manage and live well with a disability allows researchers and clinicians to better target interventions aimed at increasing disability management self-efficacy (DMSE). The purpose of this study was to examine the associations between demographic and clinical indicators, and self-efficacy for DMSE in individuals with chronic physical conditions. Adults (N = 815) with muscular dystrophy, multiple sclerosis, spinal cord injury, or post-polio syndrome completed a self-report mailed survey assessing DMSE, perceived social support, depression symptoms, resilience, fatigue, pain interference, satisfaction with participation in social roles, physical function, and demographics. A cross-sectional regression model was used to examine the associations between the clinical and demographic factors, and DMSE. The model explained 67% of the variance in DMSE. Satisfaction with participation in social roles, resilience, pain interference, social support, and fatigue were statistically significant. Better social functioning, more resilience, and less pain and fatigue were most strongly associated with DMSE. Interventions aimed at increasing DMSE should include strategies for improving social participation.

Relationship between perceived social support and patient-reported communication outcomes across communication disorders: a systematic review.

BACKGROUND: Beyond the severity of voice, speech and language impairments, one potential predictor of communication success across adult populations with communication disorders may be perceived social support: the expectation that others will provide support if needed. Despite the preponderance of intervention approaches that assume a positive relationship between perceived social support and patient-reported communication success, the evidence base for these relationships is limited. AIMS: The aim of this systematic review is to explore relationships between measures of perceived social support and patient-reported communication outcomes in adult populations with communication disorders. METHODS & PROCEDURES: The PRISMA guidelines were followed in the conduct and reporting of this review. Electronic databases including PubMed, PsychINFO and CINAHL were systematically searched up to 19 May 2017. Additional data were obtained for two studies. All the included studies were appraised using the Critical Appraisal Skills Program (CASP) tools. Given the heterogeneous nature of the studies, data synthesis was narrative for the quantitative studies. A meta-ethnographic approach was used to synthesize qualitative data. OUTCOMES & RESULTS: Eight quantitative and four qualitative studies met eligibility criteria. All quantitative studies met eight of eight quality criteria. For the qualitative studies, one study met nine of nine quality criteria; the remaining three studies met three, seven and eight quality criteria. Of the eight included quantitative studies, six independent data sets were used. Results revealed no significant relationships between perceived social support and communication outcomes in three studies (two aphasia with one data set, one Parkinson's disease), while perceived social support was a weak, but significant predictor in two studies (one multiple sclerosis, one head and neck cancer). Three additional studies (two aphasia with one data set; one Parkinson's disease) found that relationships were initially weak, but strengthened over time to become moderate. Results from qualitative studies (one head and neck cancer, two aphasia, one multiple sclerosis) revealed that perceived social support acted as a facilitator, and absent or misguided support acted as a barrier to communication outcomes. Skilful, responsive family members were able to facilitate better quality of communicative interactions, whereas lack of social support, or negative attitudes and behaviours of other people, were barriers. CONCLUSIONS & IMPLICATIONS: While perceived social support may affect communication outcomes in adults with communication disorders, current measures may not adequately capture these constructs. Results have implications for future research and interventions for speech and language therapists.

Communicative participation and quality of life in head and neck cancer.

OBJECTIVE: The purpose of this study was to determine how a new self-report outcome measure of communicative participation, the Communicative Participation Item Bank (CPIB), related to disease- and discipline-specific quality of life (QOL) outcomes in a head and neck cancer (HNC) population. METHODS: One hundred ninety-five individuals treated for HNC completed the CPIB, the University of Washington Quality of Life questionnaire (UW-QOL), and the Voice Handicap Index-10 (VHI-10). RESULTS: Results revealed moderate QOL scores across the UW-QOL (mean scores: global QOL = 66; physical subscale = 70; social-emotional subscale = 73) and VHI-10 (mean = 16). Correlations between the CPIB and the UW-QOL scores were statistically significant (P < .001) but relatively weak (r = .37-.38). As hypothesized, a stronger correlation was found between the CPIB and the VHI-10 (r = -0.79; P < .001). CONCLUSION: Clinicians may consider adopting the CPIB to complement existing tools in assessing communication outcomes after HNC.

Associations between laryngeal and cough dysfunction in motor neuron disease with bulbar involvement.

True vocal fold (TVF) dysfunction may lead to cough ineffectiveness. In individuals with motor neuron disease (MND), cough impairment in the context of dysphagia increases risk for aspiration and respiratory failure. This study characterizes differences and associations between TVF kinematics and airflow during cough in individuals with bulbar MND. Sequential glottal angles associated with TVF movements during volitional cough were analyzed from laryngeal video endoscopy examinations of adults with bulbar MND (n = 12) and healthy controls (n = 12) and compared with simultaneously collected cough-related airflow measures. Significant group differences were observed with airflow and TVF measures: volume acceleration (p ≤ 0.001) and post-compression abduction TVF angle average velocity (p = 0.002) were lower and expiratory phase rise time (p = 0.001) was higher in the MND group. Reductions in maximum TVF angle during post-compression abduction in the MND group approached significance (p = 0.09). All subjects demonstrated complete TVF and supraglottic closure during the compression phase of cough, except for incomplete supraglottic closure in 2/12 MND participants. A strong positive relationship between post-compression maximum TVF abduction angle and peak expiratory cough flow was observed in the MND group, though it was not statistically significant (r = 0.55; p = 0.098). Reductions in the speed and extent of TVF abduction are seen during the expulsion phase of cough in individuals with MND. This may contribute to cough impairment and morbidity.

Scoping review of common secondary conditions after stroke and their associations with age and time post stroke.

BACKGROUND: Health care providers need to be alert to secondary conditions that might develop after stroke so that these conditions can be prevented or treated early to reduce further deterioration of health and quality of life. OBJECTIVES: To review and describe the prevalence of secondary conditions after stroke and to summarize associations between secondary conditions and age and time post stroke. METHODS: A scoping review of studies pertaining to secondary conditions after stroke published between 1986 and 2011 was conducted. RESULTS: Seventy-six articles provided information regarding 6 secondary conditions: depression, pain, falls, fatigue, bowel/bladder problems, and sleep difficulties. Prevalence varied widely across studies for each condition. The limited repeated-measures evidence suggests that secondary conditions tend to occur in the first weeks or months post stroke and may remain relatively stable over time. Other evidence from regression analyses suggests either no significant associations between time post stroke or age or mixed results. Secondary conditions appear to be most commonly associated with severity of impairments. CONCLUSIONS: Health care providers need to be alert to the development of secondary conditions after stroke in individuals as they age as well as in the poststroke time span. Obtaining a clear understanding of the prevalence of secondary conditions and associations with age and time post stroke is difficult because of variations in research methodologies. Future research is needed to define secondary condition prevalence and risk factors more clearly and to identify interventions that could reduce the prevalence and impact of these conditions on quality of life.

Communication support through multimodal supplementation: a scoping review.

Speech supplementation strategies improve spoken communication for people with motor speech disorders who experience reduced speech intelligibility. The purpose of this review was to summarize the literature on traditional supplementation strategies (e.g., alphabet supplementation, topic supplementation, and gestural supplementation) and to expand the definition of speech supplementation to include additional modalities, such as augmenting speech with pictures via mobile technology, and conversation management strategies. Results showed that studies of traditional supplementation consistently reported positive outcomes, including increased intelligibility, decreased speech rate, and positive attitudes toward speakers. New modalities, such as supplementing speech through digital photos, may come to be integrated with traditional approaches, given the proliferation of digital photography and mobile tablet technologies. In addition, new research is exploring the role of communication partners in dyads where one speaker has dysarthria, as well as strategies that communication partners employ to understand dysarthric speech.

Reframing transgender communication in gender-affirming communication care: Comfort and confidence are the main goals.

PURPOSE: To understand the communicative participation experiences of transgender people through a qualitative inquiry, and to address similarities and differences in experiences across genders. METHOD: This study was a secondary analysis of interview data gathered for modifying the Communicative Participation Item Bank for use with transgender populations. Fourteen transgender participants attended individual qualitative interviews. During the interview, participants shared their communication experiences in various situations and the availability of social supports related to communication. Qualitative content analysis was used to develop themes and subthemes from the data. RESULT: Three themes emerged from the data: the participants' priorities for comfort, safety, and authenticity; the use of an internal "checklist" to optimise their communication; and changes in attitudes towards communication over time. Across themes, participants shared core communication experiences regardless of gender identities. CONCLUSION: The findings support prior research on voice-related communication experiences of transgender people. A key finding is the notion that communication success is influenced by sociocultural contexts and the physical environment beyond their communication presentation. To achieve targeted comfort and satisfaction in communication, healthcare professionals need to consider the transgender client's communication contexts, and incorporate a life-participation approach to gender-affirming voice and communication training.

Endoscopic assessment of vocal fold movements during cough.

OBJECTIVES: Little is known about the function of the true vocal folds (TVFs) during cough. The objective of this study was to determine the reliability of measuring TVF movements during cough and to obtain preliminary normative data for these measures. METHODS: Sequential glottal angles associated with TVF adduction and abduction across the phases of cough were analyzed from laryngeal videoendoscopy records of 38 young healthy individuals. RESULTS: The intraobserver and interobserver reliability of 3 experienced measurers was high (intraclass correlation of at least 0.97) for measuring sequential and maximum glottal angles. The TVF abduction velocity during expulsion was significantly higher than the precompression adduction velocity (p = 0.002), but there were no significant differences in maximum angle. No statistically significant differences were seen in maximum TVF angle and velocity when they were compared between the sexes and between the levels of cough strength. True vocal fold closure following expulsion occurred in 42% of soft coughs and in 57% of moderate to hard coughs. CONCLUSIONS: The TVF abduction angles during cough can be reliably measured from laryngeal videoendoscopy in young healthy individuals. The TVF movements are faster for expulsion abduction than for precompression adduction, but the extents of abduction are similar. To validly determine the cough phase duration, simultaneous measures of airflow are needed.

The Levels of Speech Usage rating scale: comparison of client self-ratings with speech pathologist ratings.

BACKGROUND: The term 'speech usage' refers to what people want or need to do with their speech to fulfil the communication demands in their life roles. Speech-language pathologists (SLPs) need to know about clients' speech usage to plan appropriate interventions to meet their life participation goals. The Levels of Speech Usage is a categorical scale intended for client self-report of speech usage, but SLPs may want the option to use it as a proxy-report tool. The relationship between self-report and clinician ratings should be examined before the instrument is used in a proxy format. AIMS: The primary purpose of this study was to compare client self-ratings with SLP ratings on the Levels of Speech Usage scale. The secondary purpose was to determine if the SLP ratings differed depending on whether or not the SLPs knew about the clients' medical condition. METHODS & PROCEDURES: Self-ratings of adults with communication disorders on the Levels of Speech Usage scale were available from prior research. Vignettes about these individuals were created from existing data. Two sets of vignettes were created. One set contained information about demographic information, living situation, occupational status and hobbies or social activities. The second set was identical to the first with the addition of information about the clients' medical conditions and communication disorders. Various communication disorders were represented including dysarthria, voice disorders, laryngectomy, and mild cognitive and language disorders. Sixty SLPs were randomly divided into two groups with each group rating one set of vignettes. The task was completed online. While this does not replicate typical in-person clinical interactions, it was a feasible method for this study. For data analysis, the client self-ratings were considered fixed points and the percentage of SLP ratings in agreement with the self-ratings was calculated. OUTCOMES & RESULTS: The percentage of SLP ratings in exact agreement with client self-ratings was 44.9%. Agreement was lowest for the less-demanding speech usage categories and highest for the most demanding usage category. There was no significant difference between the two groups of SLPs based on knowledge of medical condition. CONCLUSIONS & IMPLICATIONS: SLPs often need to document the speech usage levels of clients. This study suggests the potential for SLPs to misjudge how clients see their own speech demands. Further research is needed to determine if similar results would be found in actual clinical interactions. Until then, SLPs should seek the input of their clients when using this instrument.

Communicative Participation in Dysarthria: Perspectives for Management.

Communicative participation is restricted in many conditions associated with dysarthria. This position paper defines and describes the construct of communicative participation. In it, the emergence of this construct is reviewed, along with the predictors of and variables associated with communicative participation in the dysarthrias. In doing so, the features that make communicative participation unique and distinct from other measures of dysarthria are highlighted, through emphasizing how communicative participation cannot be predicted solely from other components of the World Health Organization's International Classification of Functioning, Disability and Health (ICF), including levels of impairment or activity limitations. Next, the empirical literature related to the measurement of communicative participation and how this research relates to dysarthria management is presented. Finally, the development of robust clinical measures of communicative participation and approaches to management is described from the point of view of the clinician. We argue that communicative participation should be a primary focus of treatment planning and intervention to provide patient-centered, holistic, and value-based clinical interventions which are responsive to the needs of individuals living with dysarthria.

Training students from rehabilitation professions on communicating with patients with communication disorders.

BACKGROUND: FRAME, a mnemonic referring to a program for helping health care providers adapt patient-provider communication when working with patients with communication disorders, improves the knowledge, confidence, and communication skills of medical students for working with this population. However, the impact of the FRAME program for preparing students from the rehabilitation disciplines to work with patients with communication disorders is unknown. OBJECTIVE: To examine the effects of the FRAME program on the knowledge, confidence, and communication skills of students in physical therapy (PT), occupational therapy (OT), and prosthetics and orthotics (P&O) in terms of how to communicate effectively with patients with communication disorders. DESIGN: An exploratory, quasi-experimental pretest-posttest design. SETTING: PT, OT, and P&O clinical education programs at the University of Washington's Department of Rehabilitation Medicine. PARTICIPANTS: Twenty rehabilitation students (PT = 12; OT = 7; and P&O = 1) participated in the FRAME training. INTERVENTIONS: The FRAME program, delivered in a single, 2-hour session teaches students communication skills to use with patients with various types of communication disorders. MAIN OUTCOME MEASURES: A quiz of students' knowledge about communication disorders and a self-rating of confidence for interacting with this patient population were used. Speech-language pathology graduate clinicians rated students' use of communication strategies from each area of the FRAME training during interactions with standardized patients portraying aphasia and dysarthria. Student qualitative feedback were also collected. RESULTS: Students' knowledge, confidence, and use of communication strategies improved significantly following training. Greatest gains were observed in students' ability to familiarize themselves with how a patient communicates and establish a method of communication before proceeding with the interview. Qualitative feedback aligned with these findings. CONCLUSIONS: The FRAME program increases the knowledge, confidence, and use of communication strategies in rehabilitation students in order to communicate more effectively with patients with communication disorders in their future careers.

Predicting Communicative Participation in Adults Across Communication Disorders.

Purpose The purpose of this study was to explore the extent to which communicative participation differs across diagnoses and if there are common predictor variables for communicative participation across diagnoses. Method Survey data on self-report variables including communicative participation were collected from 141 community-dwelling adults with communication disorders due to Parkinson's disease, cerebrovascular accident, spasmodic dysphonia, or vocal fold immobility (VFI). Analysis of covariance was used to determine communicative participation differences between diagnoses, with age, sex, and hearing status as covariates. Sequential entry linear regression was used to examine associations between communicative participation and variables representing a range of psychosocial constructs across diagnoses. Results The VFI group had the least favorable communicative participation differing significantly from Parkinson's disease and spasmodic dysphonia groups. Self-rated speech/voice severity, self-rated effort, mental health, perceived social support, and resilience contributed to variance in communicative participation when pooled across diagnoses. The relationship between communicative participation and the variables of effort and resilience differed significantly when diagnosis was considered. Conclusions The findings suggest that communicative participation restrictions may vary across some diagnoses but not others. People with VFI appear to differ from other diagnosis groups in the extent of participation restrictions. Effort and resilience may play different roles in contributing to communicative participation in different disorders, but constructs such as social support, severity, and mental health appear to have consistent relationships with communicative participation across diagnoses. The findings can help clinicians identify psychosocial factors beyond the impairment that impact clients' communication in daily situations.

Beyond the Patient: A Mixed-Methods Inquiry Into Family Members' Involvement in the Treatment of Parkinson's Disease to Target Third-Party Disability.

Purpose Family members of people with Parkinson's disease (PD) may experience third-party disability, manifesting as difficulty managing communication breakdowns and changed relationships influenced by communication disorders. This study examined family involvement in therapy to address third-party disability from the perspective of family members of people with PD and speech-language pathologists (SLPs). Method A mixed-methods design was used with two phases of data collection. In Phase 1 qualitative interviews, nine family members shared their perspectives about their involvement in therapy. In Phase 2, a survey was developed from Phase 1 data to gather data from SLPs (N = 110) on their clinical practices involving family members. Results Family members and SLPs agreed that when family were involved in therapy, it was primarily to support therapy exercises for the person with PD. Many SLPs reported providing supportive activities for family members. However, qualitative data from family members suggested that the limited involvement they had in therapy did not sufficiently meet their unique needs resulting from communication changes with the person with PD and other related challenges. Constraints influencing family member involvement included insurance billing regulations, privacy laws for patients, and family members' availability. Conclusions While some families and SLPs reported efforts to specifically include families and address their needs in therapy, these practices were inconsistent and, from families' perspectives, insufficient to meet their own needs. Future research should consider family-centered approaches that involve family members in speech-language therapy to enhance their daily lives, along with persons with PD.