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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. [ABSTRACT FROM AUTHOR]

Stroke survivors with aphasia who participate in intensive post-acute aphasia rehabilitation programs make a variety of significant investments. As the number of Intensive Comprehensive Aphasia Programs (ICAPs) increase across healthcare settings worldwide, patient perspectives of this innovative service delivery become increasingly important. Stakeholder perspectives can provide meaningful contributions to intervention implementation, growth, and sustainability. The purpose of this pilot study was to qualitatively explore patient perspectives about the experience of participating in a university-based ICAP implemented by graduate student clinicians. Researchers used an interpretive phenomenological approach to analyze nine structured interviews from five stroke survivors with aphasia who described their lived experiences during an ICAP. Thematic analysis involved an iterative and collaborative coding process. Transcripts were coded and themes were developed from the patients' shared perspectives. Trustworthiness was maximized through acknowledgement of the researchers' positionality and bias, variation in the sample, member checks, and sustained relationships between stakeholders. Three primary themes emerged from patient interviews: (1) the ICAP is hard work; (2) the impact of the ICAP on communication is noticeable, and (3) relationships "make" the ICAP. Themes support emerging evidence that ICAPs implemented by graduate student clinicians may be a worthwhile investment for many stroke survivors with aphasia, thereby contributing to the cost-benefit utility and implementation feasibility of this service delivery model. Stroke survivors with aphasia reported mixed levels of acceptability pertaining to the perceptible impact on communication improvement, and the challenging, rewarding, frequent, and varied opportunities to interact with others. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this study was to determine the influence of symptom severity and disclosure of adductor spasmodic dysphonia (ADSD) on the perceptions of human resource personnel members (HRPs) during a simulated phone interview. Method: One female speaker with ADSD was recorded reading an interview script at two time points: (a) preBOTOX injection (severe), and (b) post-BOTOX injection (mild). Thirty-two HRPs evaluated the recording in one of the two conditions via a qualitative structured interview. HRPs gave their recommendations regarding when and how to disclose ADSD. Results: In the mild condition, no HRP perceived that the applicant had a voice disorder. Disclosure was not recommended as often, as an impairment was not initially noticed. However, 15/16 HRPs commented on the applicant’s voice in the severe condition, with most suspecting she was a smoker or had lung/throat cancer. Disclosure in the severe condition was recommended more often, as it clarified symptoms that were noted at the outset. Conclusions: Symptom severity in ADSD influences employer perceptions during the phone interview process. Incorrect assumptions may be made about applicants with severe symptoms, and apparentness of symptoms influences whether or not disclosure is recommended. Results have implications for counseling individuals with ADSD who are navigating the job interview process. [ABSTRACT FROM AUTHOR]

Purpose: The Communicative Participation Item Bank (CPIB) was developed to evaluate participation restrictions in communication situations for individuals with speech and language disorders. This study evaluated the potential relevance of CPIB items for individuals with hearing loss. Method: Cognitive interviews were conducted with 17 adults with a range of treated and untreated hearing loss, who responded to 46 items. Interviews were continued until saturation was reached and prevalent trends emerged. A focus group was also conducted with 3 experienced audiologists to seek their views on the CPIB. Analysis of data included qualitative and quantitative approaches. Results: The majority of the items were applicable to individuals with hearing loss; however, 12 items were identified as potentially not relevant. This was largely attributed to the items' focus on speech production rather than hearing. The results from the focus group were in agreement for a majority of items. Conclusions: The next step in validating the CPIB for individuals with hearing loss is a psychometric analysis on a large sample. Possible outcomes could be that the CPIB is considered valid in its entirety or the creation of a new questionnaire or a hearing loss-specific short form with a subset of items is necessary. [ABSTRACT FROM AUTHOR]

Purpose: In speech-language pathology, there is increasing attention on participation-focused interventions to optimize participation in valued life roles. The purpose of this study was to investigate how speech-language pathologists (SLPs) in the United States address life participation in therapy programs, as well as their opinions regarding barriers and facilitators to participation-focused intervention. Method: An online questionnaire presented case scenarios for aphasia, dysarthria, and laryngectomy to 66 SLPs who have worked with adults. SLPs were asked to write goals and describe therapy activities for the scenarios. The final section of the questionnaire was an open-ended question regarding barriers and facilitators to participation-focused intervention. Results: Many SLPs addressed participation in their rationales for therapy; 50% of goals had a participationfocused rationale. However, the goals, activities, and outcomes measures typically focused more on impairment and skill performance. Only 8% of goals specifically referenced participation. Although many SLPs stated that participation-focused intervention is important, they identified many barriers to implementation including time and productivity constraints, limits of clinical settings, and documentation challenges. Conclusions: There is potential for gaps between SLPs’ participation-focused rationale for therapy and activities or outcomes measures that often do not include participation elements. SLPs are interested in participation-focused treatment resources. [ABSTRACT FROM AUTHOR]

Background: While the field of speech-language pathology and medical education both provide training to improve the abilities of their students to communicate with patients, these fields rarely interact or collaborate with one another to maximise the effectiveness of this training. With a recent emphasis on the communication needs of patients with aphasia and other communication disorders in healthcare, and barriers these patients often face in accessing healthcare services, it has become increasingly important to review current research regarding patient–provider communication training, as well as what speech-language pathology and medical education can learn from one another in this area. Aims: The purpose of this literature review was (1) to examine the impact of communication disorders on patient–provider communication, (2) to identify gaps in current patient–provider communication training in medical education that speech-language pathology can help fill, and (3) to highlight innovations in medical education that may enhance the clinical training of speech-language pathology students. Main Contributions: There is a significant body of research to demonstrate the effectiveness of patient–provider communication training in medical education. However, research and training in this area often neglects patients with aphasia and other communication disorders, who are more vulnerable to medical errors and poorer health outcomes than patients without communication disorders. Speech-language pathologists (SLPs) are uniquely qualified to train other healthcare providers in communication techniques to use with patients with communication disorders. The field of speech-language pathology can also benefit from using patient–provider communication frameworks and standardised patients to improve student training and service delivery for patients with communication disorders. Conclusions: Collaboration between speech-language pathology and medical education can help to ensure the highest-quality healthcare services are offered to the patients they serve. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this study was to conduct the initial psychometric analyses of the Communicative Participation Item Bank--a new self-report instrument designed to measure the extent to which communication disorders interfere with communicative participation. This itembank is intended for community-dwelling adults across a range of communication disorders. Method: A set of 141 candidate items was administered to 208 adults with spasmodic dysphonia. Participants rated the extent to which their condition interfered with participation in various speaking communication situations. Questionnaires were administered online or in a paper version per participant preference. Participants also completed the Voice Handicap Index (B. H. Jacobson et al., 1997) and a demographic questionnaire. Rasch analyses were conducted using Winsteps software (J. M. Linacre, 1991). Results: The results show that items functioned better when the 5-category response format was recoded to a 4-category format. After removing 8 items that did not fit the Rasch model, the remaining 133 items demonstrated strong evidence of sufficient unidimensionality, with the model accounting for 89.3% of variance. Item location values ranged from --2.73 to 2.20 logits. Conclusions: Preliminary Rasch analyses of the Communicative Participation Item Bank show strong psychometric properties. Further testing in populations with other communication disorders is needed. [ABSTRACT FROM AUTHOR]

Abstract: Purpose: This study examined satisfaction with communicative participation as reported by adults with multiple sclerosis (MS). Method: Eight community-dwelling adults with MS participated in semi-structured interviews. They were asked to discuss their satisfaction with their communication in a variety of situations. Interviews were analyzed using a constant comparative method of qualitative description. Results: Themes derived included: Comfort, consisting of Ease and Confidence; Success of the Outcome, including Function is Achieved and A Connection is Made; and Personal Meaning of Participation, including Personal Preferences, Comparison with the Past, and Thinking about One''s Own Communication. Conclusions: Participants described multiple facets of satisfaction with communicative participation. Some of the dimensions were similar to those in existing assessment instruments such as levels of ease or difficulty with performance. Participants did not talk about frequency of activities as a key part of their satisfaction. Implications for identifying intervention targets and treatment outcome measurements are provided. Learning outcomes: The reader should be able to: 1) define communicative participation and identify key elements of this construct; 2) identify the issues that were most relevant to satisfaction with communicative participation with participants with MS; and 3) identify reasons for greater emphasis on the subjective viewpoint of people with communication disorders in measurement of treatment outcomes. [Copyright &y& Elsevier]

The purpose of this study was to explore the biopsychosocial consequences of spasmodic dysphonia (SD) as experienced by people with SD. Qualitative research methods were used to investigate the insider's perspective of living with SD. Six adults with SD participated in face-to-face phenomenological interviews. The results are summarized in a model of personal experiences of SD which shows that communication-related quality of life (QOL) is shaped by experiences with multiple physiologic (voice quality, effort, voice dependability); personal (affective responses, changes in self-view, coping strategies) and social (physical environment, other people, participation in social roles) factors. Communication-related QOL is a complex and individualized construct with multidimensional contributors. This study suggests that understanding the nature of communication-related QOL for each individual requires exploration of each component of the model, exploration of the unique relationships among components for each person, and recognition of the multidimensional factors that shape the experience of SD. Learning outcomes: As a result of this activity the reader will be able to (1) identify general features of the phenomenological research method; (2) identify the three general categories of psychosocial consequences of SD; (3) identify those psychosocial consequences of SD that are under-represented in the literature; and (4) identify key conclusions of the communication-related quality of life model. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this study was to obtain a self-reported account of the experience of living with oromandibular dystonia (OMD) to gain a better understanding of both the daily facilitators and barriers to communicative participation and the strategies used for adapting to life with OMD. Method: Eight individuals with OMD and dysarthria participated in 1 face-to-face, semistructured interview. Interviews were audio-recorded and transcribed verbatim. Qualitative, phenomenological methods of coding, immersion, and emergence were used in the analysis of interview data. Results: Three major themes and 7 subthemes emerged from the analysis of interview data. First, "speaking is different now" provided examples of how speech changes are manifested in various life situations. Second, "my roles have changed" addressed how OMD has impacted work, home, and social roles. Third, "I accept it and move on" involved finding strategies that help and adopting a different perspective. Conclusion: We suggest that the management of OMD must take a more holistic approach by addressing consequences beyond the physical symptoms and be tailored to each individual based on his or her personal concerns and goals. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Purpose: The aim of this study was to describe experiences of speaking with 2 forms of noninvasive positive pressure ventilation (NPPV)--mouthpiece NPPV (M-NPPV) and nasal bilevel positive airway pressure (BPAP)--in people with neuromuscular disorders who depend on NPPV for survival. Method: Twelve participants (ages 22-68 years; 10 men, 2 women) with neuromuscular disorders (9 Duchenne muscular dystrophy, 1 Becker muscular dystrophy, 1 postpolio syndrome, and 1 spinal cord injury) took part in semistructured interviews about their speech. All subjects used M-NPPV during the day, and all but 1 used BPAP at night for their ventilation needs. Interviews were audio-recorded, transcribed, and verified. A qualitative descriptive phenomenological approach was used to code and develop themes. Results: Three major themes emerged from the interview data: (a) M-NPPV aids speaking (by increasing loudness, utterance duration, clarity, and speaking endurance), (b) M-NPPV interferes with the flow of speaking (due to the need to pause to take a breath, problems with mouthpiece placement, and difficulty in using speech recognition software), and (c) nasal BPAP interferes with speaking (by causing abnormal nasal resonance, muffled speech, mask discomfort, and difficulty in coordinating speaking with ventilator-delivered inspirations). Conclusion: These qualitative data from chronic NPPV users suggest that both M-NPPV and nasal BPAP may interfere with speaking but that speech is usually better and speaking is usually easier with M-NPPV. These findings can be explained primarily by the nature of the 2 ventilator delivery systems and their interfaces. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this study was to examine the effect of severity of adductor spasmodic dysphonia (ADSD) and information about it on unfamiliar listeners’ attitudes about speakers’ personal characteristics, perceived vocal effort, and listener comfort on the basis of ratings of speech recordings. Method: Fifteen women with ADSD and 5 controls provided speech samples. Forty-five unfamiliar listeners were randomized into 3 groups. Listeners in Group 1 received no information, listeners in Group 2 were told that some speakers had voice disorders or had no voice concerns, and listeners in Group 3 were provided diagnostic labels for each speaker and information about ADSD. Listeners then rated speech samples for attitudes, perceived vocal effort, and listener comfort. Results: Speakers with ADSD were judged significantly worse than controls for attitudes related to “social desirability” and “intellect.” There was no effect of severity on “personality” attributes. However, provision of a diagnostic label resulted in significantly more favorable personality ratings than when no label was provided. Perceived vocal effort and comfort became significantly more negative as ADSD severity increased. Finally, most listener ratings were unaffected by provision of additional information about ADSD. Conclusions: Listeners’ perceptions about speakers with ADSD are difficult to change. Directions for counseling and public education need future study. [ABSTRACT FROM AUTHOR]

Purpose: To assess the adequacy of self-report instruments in speech-language pathology for measuring a construct called communicative participation. Method: Six instruments were evaluated relative to (a) the construct measured, (b) the relevance of individual items to communicative participation, and (c) their psychometric properties. Results: No instrument exclusively measured communicative participation. Twenty-six percent (n = 34) of all items (N = 132) across the reviewed instruments were consistent with communicative participation. The majority (76%) of the 34 items were associated with general communication, while the remaining 24% of the items were associated with communication at work, during leisure, or for establishing relationships. Instruments varied relative to psychometric properties. Conclusions: No existing self-report instruments in speech-language pathology were found to be solely dedicated to measuring communicative participation. Developing an instrument for measuring communicative participation is essential for meeting the requirements of our scope of practice. [ABSTRACT FROM AUTHOR]