Communicative participation outcomes in individuals with Parkinson's disease receiving standard care speech-language therapy services in community settings.

BACKGROUND: The Communicative Participation Item Bank (CPIB) is a patient-reported outcome measure (PROM) designed to measure the extent of interference, or difficulty, experienced by adults with communication disorders participating in their day-to-day communication activities. To date, there is limited evidence regarding sensitivity of the CPIB for capturing change with intervention in people with Parkinson's disease (PwPD). AIMS: The purpose of this study was to examine the following measurement properties of the CPIB in PwPD who received community-based, standard care, speech-language therapy focusing on motor speech concerns: Change over time between treatment and observation groups, comparison to patient-defined ideal and satisfactory targets, comparison of static short form to computerised adaptive testing (CAT), comparison of self to proxy-rated scores, and comparison to other common PROMs. METHODS AND PROCEDURES: Forty-six PwPD (20 treatment/26 observation) completed data collection upon enrolment (pre-treatment) and 6 months later. In addition to the CPIB, PROMs included the Voice Handicap Index 10-item short form (VHI-10), PROMIS Global Health-Related Quality of Life, Levels of Speech Usage, self-rated speech severity, and Patient Health Questionnaire-9 (PHQ-9). Participants also engaged in qualitative interviews. Forty-four family members completed proxy CPIB ratings. OUTCOMES AND RESULTS: There were no significant differences between treatment and observation groups on the CPIB pre-treatment, but there were significant differences post-treatment. The differences appeared to be largely due to significant gains in the treatment group. No participants reached their ideal CPIB target, and few reached their satisfactory target. Static CPIB short form and CAT scores were not significantly different, with an average of five CAT items administered per participant. Overall group similarities between patient and proxy scores may have obscured wide variability across individual patient-proxy pairs. Associations between CPIB and VHI-10, health-related quality of life, self-reported speech severity, and depression ranged from weak to moderate. CONCLUSIONS AND IMPLICATIONS: The CPIB appears to be sensitive to capturing change with intervention, and similar results are obtained with the static short form and CAT formats. One clinical caution is that even with gains observed in the treatment group, no participants obtained their ideal communicative participation goals, and few obtained a satisfactory level of communicative participation. Thus, while current interventions are beneficial, they may not meet the full range of clients' communication needs. While responding to the CPIB through a proxy rater may be feasible, caution is warranted due to concerns about maintaining the autonomy of PwPD. WHAT THIS PAPER ADDS: What is already known on this subject The communication disorders associated with Parkinson's disease (PD) can have a negative impact on quality of life and life participation as measured by patient (or person)-reported outcome measures (PROMs). The Communicative Participation Item Bank (CPIB) is one PROM available to use with adults with communication disorders. However, little is known about whether the CPIB captures changes in communicative participation as a result of standard care treatment for people with Parkinson's disease (PwPD). Use of computerised adaptive testing (CAT), proxy report and comparison to targeted participation outcomes have not been explored. What this study adds to existing knowledge As a result of this study, we know that the CPIB captured differences between treatment and observation groups after community-based, standard care speech therapy intervention focusing on motor speech production in PwPD. Static short form and CAT scores did not differ significantly, so the CAT option provides better efficiency requiring, on average, five items to administer compared to the 10-item short form. Proxy and PwPD scores did not differ as a group, but wide variability was noted. What are the potential or actual clinical implications of this work? The CPIB may be a clinically sensitive instrument for capturing changes in communicative participation after treatment. No participants met their ideal CPIB target, and few reached their satisfactory target, suggesting that while current interventions contribute to gains in communicative participation, there are still unmet needs that may call for support and interventions addressing the more complex array of factors affecting communicative participation outcomes for PwPD.

Understanding How Older Adults with Communication Difficulties Access Health Services: What We Can Learn from the National Health and Aging Trends Study (NHATS).

People with communication disorders face barriers to accessing safe and respectful healthcare. These barriers result in increased healthcare complications and inefficiencies, both of which contribute to increased healthcare costs. One obstacle to advocating for accommodations that could improve healthcare for this population is the absence of cost effectiveness studies of such accommodations specifically, as well as a paucity of data defining the needs of this population in general. The purpose of this study was to explore how people with communication and swallowing difficulties are characterized in the National Health and Aging Trends Study (NHATS), a nationally representative survey of Medicare beneficiaries aged 65 and older, and how they manage their healthcare. Cross-sectional data from the NHATS rounds 5 to 9 (2015-2019) resulted in 8,038 unique respondents, 3,243 of who reported speech, memory, hearing, and/or swallowing difficulties. More than 90% of respondents with communication difficulties reported having a regular doctor. Less than 60% of respondents with communication difficulties had a family member or caregiver go to medical appointments with them, and around 70% of that subset of participants received help from that caregiver with communication during appointments. Fewer than 15% of respondents with communication difficulties used the internet for healthcare communication or information. Less than 5% of respondents across all communication difficulty categories had received rehabilitation services for communication in the year prior to their survey responses. While the information gleaned from NHATS points to likely gaps between the needs people with communication disorders may have for safe and accessible healthcare, and the support available, future research is needed to improve and clarify how communication disorders are defined and characterized in large-scale surveys to generate more interpretable data. These stronger empirical foundations are needed to support cost-effectiveness analyses to advocate for better communication accessibility of healthcare settings.

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.

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.

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.

"Take Us Into Account": Perspectives of Family Members of People With Parkinson's Disease Regarding Speech-Language Pathology Intervention.

PURPOSE: While communication changes associated with Parkinson's disease (PD) have been documented, research on the impact of these changes on family members is just beginning to emerge. With this new focus on family, questions arise as to how well speech-language pathology services address their needs communicating with their loved one with PD. The purpose of this study was to explore the experiences of family members of people with PD (PwPD) and their recommendations for speech-language pathology services that incorporated their needs. METHOD: Seventeen spouses/partners of PwPD participated in focus groups that were recorded, transcribed, and analyzed using thematic analyses. RESULTS: Three themes emerged, all focusing around the central tenet that the experiences of family members, and hence their need for speech-language pathology support, transitioned through the stages of PD progression. Theme 1 summarized increasing burdens on family to manage communication as PD progressed beyond a brief period of independent strategy use by PwPD. Theme 2 highlighted multifactorial contributors to communication burdens on families, with cognitive impairments being the most underrecognized. Theme 3 illustrated how families wanted more intervention options from speech-language pathologists (SLPs) that included them, but with a tailored approach for PD stages and personal preferences. CONCLUSIONS: When SLPs provide families with either generic communication strategies or strategies that do not fit the individualized needs of PwPD and their families, we may inadvertently be increasing the burden on families. There is a need for systematic, evidence-based, family-centered interventions that include, but go beyond, current speech-focused interventions to meet the shared communication needs of PwPD and their families.

Patient Characteristics and Treatment Patterns for Speech-Language Pathology Services in Skilled Nursing Facilities.

PURPOSE: Skilled nursing facility (SNF) care has historically been influenced by systemic issues that could impact speech-language pathology (SLP) service provision. However, there has been little study specifically on factors associated with SLP service provision in SNFs. Large administrative data sets are rarely analyzed in SLP research but can be used to understand real-world SLP services. This study investigated associations between patient and facility characteristics and SLP services. METHOD: Mixed-effects logistic regression models were used to evaluate factors associated with SLP service provision in 2018 Medicare administrative data representing 833,653 beneficiaries. RESULTS: Beneficiaries had higher odds of receiving SLP services when they had neurologic diagnosis (odds ratio [OR] = 3.32), had SLP-related functional impairments (ORs = 1.19-3.41), and received other rehabilitative services (ORs = 3.11-3.78). Beneficiaries had lower odds of receiving SLP services when they received care from SNFs located in hospitals versus freestanding (OR = 0.45), with need for interpreter services (OR = 0.76) and with thresholding (OR = 0.68), a financially motivated practice. Direction of association varied across racial and ethnic groups and measures of location. Odds of being provided SLP services decreased with increasing communication impairment severity. CONCLUSIONS: The results suggest that clinicians are identifying patients with diagnoses most likely to warrant SLP services. However, association disparities and weakening association of service provision with increasing impairment severity have concerning clinical implications. Health services research methods can be used to further explore SLP practices in SNFs to support equitable service provision.

Developmental, sensory and behavioral outcomes among infants and toddlers with prenatal alcohol exposure.

BACKGROUND: Prenatal alcohol exposure (PAE) can disrupt children's neurodevelopment and exert lasting influences on overall child well-being and family functioning. A comprehensive exploration of developmental outcomes in infants/toddlers with PAE seen for a diagnosis on the fetal alcohol spectrum can inform early identification and intervention. AIMS: To describe the prevalence and patterns of neurodevelopment, sensory processing, and emotional and behavioral functioning in a clinical sample of infants/toddlers with PAE. METHODS: In this retrospective analysis, clinical data from 125 infants/toddlers with PAE, aged 2-42 months, assessed at the University of Washington Fetal Alcohol Syndrome Diagnostic and Prevention Network clinic were analyzed. RESULTS: Seventy-four to 87% of infants/toddlers demonstrated delayed development in one or more domains of the Bayley Scales of Infant and Toddler Development (n = 125). Adverse developmental outcomes were significantly correlated with PAE and/or postnatal risk factors. All 93 infants/toddlers with a complete Infant/Toddler Sensory Profile obtained definite difference scores in at least one quadrant/section. Over half of infant/toddlers with a completed Child Behavior Checklist/1½- 5 had total problem scores in the borderline or clinical range. CONCLUSIONS: Findings suggest that several domains of child functioning may be vulnerable to the teratogenic impact of PAE, and that these delays are evident in the first years of life. Early screening, ongoing monitoring and comprehensive assessment is needed to facilitate earlier identification and guide clinical intervention.

The Communicative Participation Item Bank-Gender-Diverse Version: Item Bank Calibration and Short Form.

PURPOSE: The purpose of this study was to calibrate an item set for a new version of the Communicative Participation Item Bank (CPIB) specifically for use with gender-diverse clients. This new version contains a new item stem as well as other minor wording changes from the original CPIB in order to be acceptable to gender-diverse respondents. METHOD: Survey data on 47 candidate items were collected from 434 transgender individuals: 219 assigned female at birth (AFAB) and 215 assigned male at birth (AMAB). Item response theory analyses included evaluation of unidimensionality, local dependence, fit to a graded response model, and differential item functioning (DIF) between AFAB and AMAB respondents. RESULTS: The original set of 47 items was unidimensional, but 16 items were removed due to local dependence, resulting in a final item bank of 31 items. There was no evidence of DIF between AFAB and AMAB participants. Reliability of the full item bank is good (i.e., > 0.8) between T scores of 20 and 76 and high (i.e., > 0.9) between T scores of 20 and 68. The short form had good reliability (i.e., > 0.8) between T scores of 24 and 64. CONCLUSIONS: The Communicative Participation Item Bank-Gender-Diverse (CPIB-GD) version provides a new option for person-reported outcome measurement with gender-diverse clients. Clinicians are cautioned to use only the new CPIB-GD with gender-diverse clients, and not the original CPIB due to unacceptable wording in the original version for this population. The original CPIB remains valid and appropriate for the populations for which it was developed. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.24993309.

Effects of Aided Communication on Communicative Participation for People With Amyotrophic Lateral Sclerosis.

PURPOSE: Many people with amyotrophic lateral sclerosis (PALS) experience speech changes, which may interfere with participation in communication situations. This study was designed to investigate the effects of aided communication on self-rated communicative participation among PALS and the relationship between speech function and communicative participation for PALS at various stages of speech impairment and communication aid use. METHOD: Participants with amyotrophic lateral sclerosis completed an online questionnaire in which they identified their current communication methods, rated their speech function, and rated their communicative participation in various situations on a modified version of the Communicative Participation Item Bank short form. PALS who reported using aided communication rated their communicative participation under two conditions: with unaided communication only and with access to all of their communication methods. RESULTS: Communication aids appeared to support communicative participation for many participants with dysarthria. Across all levels of speech function, PALS who use aided communication reported better participation under the all-methods condition than the unaided-only condition, with the largest benefits for participants with anarthria (Revised ALS Functional Rating Scale [ALSFRS-R] speech rating = 0). Communicative participation ratings worsened with more severe speech impairment under both conditions for most levels of speech function, but PALS with anarthria (ALSFRS-R speech rating = 0) reported better participation under the all-methods condition than those who used residual speech in combination with non speech methods (ALSFRS-R speech rating = 1). CONCLUSIONS: Aided communication can help PALS continue to participate in various communication situations as their speech function deteriorates. Variability in self-rated communicative participation, even for PALS at the same level of speech function, highlights the need for an individualized approach and consideration of personal and environmental factors in augmentative and alternative communication intervention. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.22782986.

Modifying the Communicative Participation Item Bank (CPIB) for individuals receiving gender-affirming communication care: Stakeholder feedback from cognitive interviews.

INTRODUCTION: The Communicative Participation Item Bank (CPIB) is a person-reported outcome measure designed for adults with communication disorders. The CPIB has not been validated for use with clients seeking gender-affirming communication care. The purpose of this study was to determine modifications needed to the CPIB for it to be appropriate for transgender respondents. METHODS: Individual qualitative cognitive interviews were conducted with 14 transgender adults (seven assigned male at birth, six assigned female at birth, one intersex / assigned female at birth). As participants completed the CPIB, they were asked to 'think out loud' to share their reactions to the items, reasons for their item responses, and any recommendations for changing the CPIB. Interviews were recorded, transcribed, and analyzed to identify common and salient trends in participants' feedback. RESULTS: The most salient change participants required was in the CPIB item stem. The original stem ("Does your condition interfere with….") is inappropriate for transgender clients because referring to being transgender as a 'condition' is unacceptable. A new stem ("How difficult is it for you to ….") was acceptable to participants. The original CPIB uses the phrase 'family and friends' to refer to safe and comfortable communication partners. Participants in this study reported that this does not reflect the experiences of many transgender people who are not accepted by their biological families. The recommended alternate wording is "people who know you well." The items reflected situations that were relevant to participants, and wording was acceptable with few exceptions. Participants suggested they would have responded to the CPIB items differently earlier in their transition, with their scores improving over time. CONCLUSIONS: The original CPIB questionnaire should not be used with transgender clients due to unacceptable wording. The modified items generated from this study require psychometric calibration for a new CPIB version for clients seeking gender-affirming communication care.

Concerns and Strengths: Caregiver Perceptions of Their Infant/Toddler with Prenatal Alcohol Exposure.

Caregiver-reported assessments provide opportunities for caregivers to share concerns and identify the strengths of their infant/toddler regarding prenatal alcohol exposure (PAE). These insights may reveal under-recognized concerns and inform a strengths-based approach to early intervention. The purpose of this study was to describe the type and frequency of caregiver-reported concerns and strengths in a sample of infants/toddlers at the time of their fetal alcohol spectrum disorder (FASD) diagnostic evaluation. Caregivers' concerns and strengths were identified in the context of two parent-report questionnaires, the Infant Toddler Sensory Profile and Child Behavior Checklist/1½-5. By using content analysis, caregivers' open-ended responses were identified, coded, and analyzed. The frequencies of all the coded concerns and strengths were counted. The data were compared across the two age groups (<2 years and ≥2 years) and caregiver status. Caregivers (n = 117) identified numerous concerns and strengths across multiple categories. The most frequently reported concerns were related to aggressive behavior, language/communication, and sensory processing. The most frequently reported strengths were related to happiness, sociability, and love. The type of concerns and strengths reported were relatively consistent across age and caregiver status. These findings reinforce the value of caregivers' perspectives and offer a reminder to practitioners that infants/toddlers with PAE and their caregivers have many strengths that can be harnessed, in addition to a range of challenges that must be addressed.

A qualitative study of reflective practice in the workplace. Speech-language pathologists have their say.

PURPOSE: Engaging in reflective practice (RP) and demonstrating reflective abilities is an essential graduate skill for speech-language pathologists (SLPs), yet limited studies have examined the perspectives of practicing SLPs and how and why they engage in RP. This qualitative study aimed to examine SLPs' experiences and perspectives of RP in diverse workplaces. METHOD: Individual semi-structured interviews were conducted with 30 SLPs working in health, education, or private practice sectors. Interviews were analysed using thematic analysis. RESULT: Three themes were developed from the data, describing what SLPs use RP for, what SLPs perceive as important in order to engage in RP in the workplace, as well as the barriers they have identified, and how SLPs have observed a change in engaging in RP as they have progressed in their careers. CONCLUSION: SLPs described that RP is valued in the workplace for supporting client focused care, problem-solving, and lifelong learning. SLPs wanted time to be protected for RP at all stages of their career and valued the relationships with others as contributing positively to RP. Perceptions of and engagement in RP changed in relation to SLPs' clinical experience. Implications for clinical practice are discussed.

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.

Development of a candidate item bank for measuring mobility of lower limb orthosis users.

BACKGROUND: Orthoses are often prescribed to improve mobility of people with chronic health conditions that affect lower limb function. Patient-reported survey instruments can be used to measure aspects of mobility that cannot be easily assessed in clinical or research settings. A population-specific item bank could be designed to measure aspects of mobility that are most important to lower limb orthosis users and used to evaluate the effects of orthoses. OBJECTIVE: To develop items for a new survey instrument to measure mobility of lower limb orthosis users. DESIGN: Survey items were developed using a qualitative item review process. SETTING: Focus groups were held by video conferencing. Cognitive interviews were conducted by telephone. PARTICIPANTS: Focus group and cognitive interview participants were adults with at least 6 months of experience using a lower limb orthosis that extended from the foot to a level above the ankle. METHODS: Research methods included focus groups with lower limb orthosis users, an item generation and reduction process that involved a stakeholder advisory panel, and cognitive interviews with target respondents. RESULTS: A total of 1180 extant items were identified in a literature review. Focus group participants (n = 29) provided feedback that informed the suitability of a construct definition and conceptual model. An advisory panel contributed to the selection of 118 candidate items for measuring orthotic mobility. Feedback from cognitive interview participants (n = 30) informed removal or revision of problematic items, resulting in a candidate bank of 100 mobility items. CONCLUSIONS: The rigorous qualitative methods applied here resulted in a large set of candidate items that spanned a range of situations relevant to moving with a lower limb orthosis. Next steps include administration of the candidate items to a large sample of lower limb orthosis users and calibration of the item bank.

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.