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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]

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]

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 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]

Purpose: Communication disorders associated with Parkinson’s disease (PD) often lead to restricted participation in life roles, yet there is a limited understanding of influencing factors and few quantitative measurement tools available. This study aimed to identify variables associated with communicative participation in PD and to examine the relationship between the Communicative Participation Item Bank (CPIB) and existing health-related quality-of-life (HRQoL) measures. Method: Self-report data from 378 participants with PD from the US and New Zealand were analysed. Data included responses to the CPIB, PD Questionnaire-8, sub-scales of the Global Health instrument from the Patient Reported Outcomes Measurement Information System (PROMIS) and additional self-report instruments. Result: Greater perceived speech disorder, lower levels of speech usage, fatigue, cognitive and emotional problems and swallowing difficulties were associated with lower levels of communicative participation. Participants’ age significantly influenced findings, interacting with country of residence, sex and speech usage. Scores on the CPIB were moderately correlated with HRQoL measures. Conclusion: Communicative participation in PD is complex and influenced by both demographic and disease-based variables, necessitating a broader view of the communicative experiences of those with PD. Measurement of communicative participation as a separate construct to existing HRQoL measures is recommended. [ABSTRACT FROM PUBLISHER]

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]