Child-led goal setting and evaluation tools for children with a disability: A scoping review.

AIM: To examine child-led goal setting and evaluation tools and approaches for children with a disability or developmental delay. METHOD: Six databases were searched for studies that included population (children aged less than 18 years with disability or developmental delay); construct (child-led goal setting tool or approach); and context (developmental therapy or rehabilitation). The utility of tools and approaches across the goal setting and evaluation process was investigated using abductive content analysis. RESULTS: Fifty articles met the inclusion criteria. Three approaches and four tools for child-led goal setting and evaluation were identified. No studies reported the clinimetric properties of tools specifically for child self-respondents. Qualitative analysis revealed six distinct goal phases in which tools and approaches were used, which were synthesized into a new framework for child-led goal setting and evaluation titled DECIDE: Direct children to goal setting; Elicit goal topics and priorities; Construct a goal statement; Indicate baseline goal performance; Develop an action plan to address the goal; and Evaluate goal progress after the intervention. INTERPRETATION: Children actively participated in goal setting and evaluation across six DECIDE goal phases. Further clinimetric information is required to support use of goal setting and evaluation tools with child self-respondents. Future research should emphasize the development of multi-phase goal setting tools and approaches for diverse populations of children.

Measuring communication as a core outcome in aphasia trials: Results of the ROMA-2 international core outcome set development meeting.

BACKGROUND: Evidence-based recommendations for a core outcome set (COS; minimum set of outcomes) for aphasia treatment research have been developed (the Research Outcome Measurement in Aphasia-ROMA, COS). Five recommended core outcome constructs: communication, language, quality of life, emotional well-being and patient-reported satisfaction/impact of treatment, were identified through three international consensus studies. Constructs were paired with outcome measurement instruments (OMIs) during an international consensus meeting (ROMA-1). Before the current study (ROMA-2), agreement had not been reached on OMIs for the constructs of communication or patient-reported satisfaction/impact of treatment. AIM: To establish consensus on a communication OMI for inclusion in the ROMA COS. METHODS & PROCEDURES: Research methods were based on recommendations from the Core Outcome Measures in Effectiveness Trials (COMET) Initiative. Participants with expertise in design and conduct of aphasia trials, measurement instrument development/testing and/or communication outcome measurement were recruited through an open call. Before the consensus meeting, participants agreed on a definition of communication, identified appropriate OMIs, extracted their measurement properties and established criteria for their quality assessment. During the consensus meeting they short-listed OMIs and participants without conflicts of interest voted on the two most highly ranked instruments. Consensus was defined a priori as agreement by ≥ 70% of participants. OUTCOMES & RESULTS: In total, 40 researchers from nine countries participated in ROMA-2 (including four facilitators and three-panel members who participated in pre-meeting activities only). A total of 20 OMIs were identified and evaluated. Eight short-listed communication measures were further evaluated for their measurement properties and ranked. Participants in the consensus meeting (n = 33) who did not have conflicts of interest (n = 29) voted on the top two ranked OMIs: The Scenario Test (TST) and the Communication Activities of Daily Living-3 (CADL-3). TST received 72% (n = 21) of 'yes' votes and the CADL-3 received 28% (n = 8) of 'yes' votes. CONCLUSIONS & IMPLICATIONS: Consensus was achieved that TST was the preferred communication OMI for inclusion in the ROMA COS. It is currently available in the original Dutch version and has been adapted into English, German and Greek. Further consideration must be given to the best way to measure communication in people with mild aphasia. Development of a patient-reported measure for satisfaction with/impact of treatment and multilingual versions of all OMIs of the COS is still required. Implementation of the ROMA COS would improve research outcome measurement and the quality, relevance, transparency, replicability and efficiency of aphasia treatment research. WHAT THIS PAPER ADDS: What is already known on this subject International consensus has been reached on five core constructs to be routinely measured in aphasia treatment studies. International consensus has also been established for OMIs for the three constructs of language, quality of life and emotional well-being. Before this study, OMIs for the constructs of communication and patient-reported satisfaction/impact of treatment were not established. What this paper adds to existing knowledge We gained international consensus on an OMI for the construct of communication. TST is recommended for inclusion in the ROMA COS for routine use in aphasia treatment research. What are the potential or actual clinical implications of this work? The ROMA COS recommends OMIs for a minimum set of outcomes for adults with post-stroke aphasia within phases I-IV aphasia treatment research. Although not intended for clinical use, clinicians may employ the instruments of the ROMA COS, considering the quality of their measurement properties. The systematic inclusion of a measure of communication, such as TST, in clinical practice could ultimately support the implementation of research evidence and best practices.

Exploring the measurement of pediatric cognitive-communication disorders in traumatic brain injury research: A scoping review.

OBJECTIVE: To synthesize information about the constructs measured, measurement instruments used, and the timing of assessment of cognitive-communication disorders (CCDs) in pediatric traumatic brain injury (TBI) research. METHODS AND PROCEDURES: Scoping review conducted in alignment with Arksey and O'Malley's five-stage methodological framework and reported per the PRISMA extension for Scoping Reviews. Inclusion criteria: (a) cohort description, case-control, and treatment studies; (b) participants with TBI aged 5-18 years; (c) communication or psychosocial outcomes; and (d) English full-text journal articles. The first author reviewed all titles, abstracts, and full-text articles; 10% were independently reviewed. OUTCOMES AND RESULTS: Following screening, a total of 687 articles were included and 919 measurement instruments, measuring 2134 unique constructs, were extracted. The Child Behavior Checklist was the most used measurement instrument and 'Global Outcomes/Recovery' was the construct most frequently measured. The length of longitudinal monitoring ranged between ≤3 months and 16 years. CONCLUSIONS AND IMPLICATIONS: We found considerable heterogeneity in the constructs measured, the measurement instruments used, and the timing of CCD assessment in pediatric TBI research. A consistent approach to measurement may support clinical decision-making and the efficient use of data beyond individual studies in systematic reviews and meta-analyses.

Reproducibility and validity of the Functional Communication Classification System for young children with cerebral palsy.

AIM: To examine interrater agreement and validity of the Functional Communication Classification System (FCCS) for young children with cerebral palsy (CP) aged 2 or 3 years. METHOD: Speech-language pathologist (SLP) and parent FCCS ratings for 31 children with CP (aged 2y, n=16; aged 3y, n=15; 18 males, 13 females) were examined for interrater agreement using a weighted Cohen's kappa statistic. Relationships between FCCS (SLP) ratings and: (1) concurrent validity with the Language Use Inventory, a standardized pragmatic assessment for children aged 18 to 47 months, (2) gross motor and fine motor function, (3) associated impairments (visual and intellectual), and (4) primary expressive communication mode were examined using Spearman's correlation coefficients. RESULTS: Almost perfect interrater agreement between SLP and parent FCCS ratings were found (kw =0.94). Correlations with FCCS (SLP) were excellent for pragmatic function (rs =-0.83, p<0.001), intellectual function (rs =0.89, p<0.001), and primary expressive communication mode (rs =0.92, p<0.001). Correlations were good for gross motor function (rs =0.72, p<0.001) and visual impairment (rs =0.70, p<0.001) and fair for fine motor function (rs =0.53, p<0.002). Analysis was unwarranted for epilepsy (n=1 out of 31) and hearing-associated impairments (n=0 out of 31). INTERPRETATION: The FCCS has excellent interrater agreement and validity for communication classification of children with CP aged 2 or 3 years and is highly suitable for surveillance and research purposes. What this paper adds The Functional Communication Classification System (FCCS) is a valid instrument for children with cerebral palsy (CP) aged 2 or 3 years. Excellent agreement exists between speech-language pathologist and parent FCCS ratings. The FCCS has excellent correlation with intelligence, pragmatic function, and primary expressive mode. Stronger correlations with the Gross Motor Function Classification System and vision exist for children aged 2 or 3 years. Weaker correlations with manual ability exist when compared to older children with CP.

The Functional Communication Classification System: extended reliability and concurrent validity for children with cerebral palsy aged 5 to 18 years.

AIM: To examine psychometric properties and clinical utility of the Functional Communication Classification System (FCCS) for classifying observable communication function in children with cerebral palsy (CP) aged 5 to 18 years. METHOD: Eighty-two children (38 males, 44 females) with CP in six age groups (5y [n=15], 8y [n=14], 10y [n=14], 12y [n=14], 15y [n=11], and 17y [n=14]) were assessed by a speech-language pathologist (SLP) and parent for FCCS ratings. Data were compared with: (1) everyday communication function, assessed using the Clinical Evaluation of Language Fundamentals - Fourth Edition Pragmatics Profile (CELF-4 PP) for familiar and unfamiliar partners; (2) motor speech, gross and fine motor function; and (3) associated impairments, including epilepsy, intelligence, hearing, and vision. Interrater agreement was calculated for FCCS ratings using kappa (κ) statistics. Relationships between FCCS ratings and other measures were examined using Spearman's correlation coefficient. RESULTS: Almost perfect interrater agreement was demonstrated between SLP and parent FCCS ratings (κw =0.96). Correlations were excellent between FCCS ratings with CELF-4 PP ratings, motor speech, and intellect; moderate with gross and fine motor function; and fair with other associated impairments (hearing, visual, and epilepsy). There was no correlation between age and FCCS. INTERPRETATION: The FCCS is a reliable and valid communication classification system for children with CP aged 5 to 18 years, and highly suitable for surveillance, research, and clinical purposes. WHAT THIS PAPER ADDS: The Functional Communication Classification System (FCCS) is valid and reliable for communication classification in children with cerebral palsy. Excellent agreement is present between speech language pathologists and parents. The FCCS shows excellent correlation with pragmatics, motor speech, and intelligence. The FCCS is moderately correlated with gross and fine motor function. The FCCS has fair correlation with epilepsy, hearing, and vision.

Factors impacting positive and negative participation of young people with cerebral palsy: a Delphi study of consumers and health professionals.

PURPOSE: To identify specific factors influencing the participation experiences of young people with cerebral palsy (CP) aged 15 to 26 years. MATERIALS AND METHODS: A three-round Delphi survey study design was used. Consumers (young people with CP and caregivers) and health professionals were asked to generate and then rate items influencing positive and negative participation experiences. Qualitative content analysis and descriptive statistics were used to classify items across the family of Participation-Related Constructs (fPRC) framework. RESULTS: Sixty-eight participants completed Round I (25 consumers, 43 health professionals). Round II resulted in a consensus for all but two items, with Round III not required. The fPRC construct with the most items rated as extremely important for positive participation experiences was Environment-Availability, and for negative participation, experiences were Environment-Acceptability for both adolescents and young adults. CONCLUSIONS: A consensus was reached on the most important items influencing the positive and negative participation experiences of young people with CP. These items should be prioritised when developing support services and allocating funding to improve the participation experiences of young people with CP.

This study is reporting consumer and professional consensus on the factors promoting positive and negative participation for young people with cerebral palsy.Ensuring availability of appropriate activities and services is extremely important for enabling positive participation experiences.Promoting acceptable attitudes of others is extremely important for alleviating negative participation experiences.

Reflections on Participation at Home, As Self-Reported by Young People with Cerebral Palsy.

This study explored the home-based participation of young people with cerebral palsy (CP) and described factors that make participation easier or harder. Fifteen young people with CP aged 15 to 26 years provided written reflections, photographs, or videos about their home-based participation experiences. Data were analyzed using reflexive thematic analysis. Self-reported reflections were grouped inductively into 129 codes, then 20 subthemes and 5 themes which emphasized CP characteristics, thoughts, emotions, equipment, environment, supports, and inclusion as important factors influencing home-based participation. Young people with CP largely described the home environment as an inclusive place to participate.

Speech and communication classification of children with cerebral palsy: Novice rater agreement and clinical utility.

PURPOSE: To examine novice inter-rater agreement and clinical utility perspectives for speech and communication classification of children with cerebral palsy (CP). METHOD: Twenty-one clinicians (speech-language pathologists [SLPs] n = 11; physiotherapists [PTs] n = 5; occupational therapists [OTs] n = 5) novice to the Viking Speech Scale (VSS), Functional Communication Classification System (FCCS), and Communication Function Classification System (CFCS) rated eight unfamiliar children with CP (8-16 years) following classification orientation. Inter-rater agreement was examined between (a) novices, (b) novice SLPs vs. PTs and OTs, and (c) novice vs. expert (kappa statistics). Utility perceptions were scored regarding classification terminology, ease of use, assistive decision-making resources, and construct validity and were analysed using Kruskal-Wallis H-tests. RESULT: Rating agreement between novices was substantial (VSS, k = 0.72, 95% CI [0.53-0.92]) to moderate (FCCS, k = 0.44, 95% CI [0.23-0.65]; CFCS, k = 0.45, 95% CI [0.18-0.71]), and almost perfect between novice and expert ratings (VSS, kw = 0.89, 95% CI [0.86-0.92]; FCCS, kw = 0.89, 95% CI [0.86-0.92]; CFCS, kw = 0.86, 95% CI [0.82-0.91]). Statistically significant differences, presented highest to lowest, were found for clinical utility: terminology (VSS, FCCS, CFCS; p = 0.02), assistive decision-making resources (FCCS, VSS, CFCS; p = 0.009), and construct validity (FCCS, CFCS, VSS; p < 0.001). CONCLUSION: Novice raters achieved substantial agreement for speech classification, supporting utilisation in clinical, research, and CP register activities. Orientation to communication classification constructs, content, and instructions is recommended for novice raters.

Exploring the experience of service users following attendance at a student-led interprofessional neurodevelopmental clinic.

PURPOSE: The aim of the current study was to understand service users' experiences at a recently established student-led interprofessional neurodevelopmental clinic for children and adolescents with suspected or confirmed prenatal alcohol exposure. METHOD: Semi-structured interviews were completed at 3-months post-clinic attendance with 10 service users: eight parents/caregivers and two youth workers/case managers. Interview data were analysed thematically using NVivo12. RESULTS: Four main themes were developed: (1) clinic attendance seen as a positive event; (2) validation, clarification, and relief, but also challenges post-assessment; (3) need for further support and importance of advocacy; and (4) drawing on lived experiences for future service improvements. CONCLUSIONS: The current study demonstrated that service users reported benefits from tailored services delivered by student practitioners that were validating, supportive, and holistic. Findings from the current study can inform the development and implementation of future innovative service delivery models for individuals with suspected or confirmed prenatal alcohol exposure.

People with fetal alcohol spectrum disorder (FASD) can experience a range of neurocognitive impairments that impact their day-to-day living.Access to assessment, early diagnosis, and appropriate supports are important protective factors associated with improved outcomes for individuals with FASD.Results highlighted the benefits to rehabilitation professionals of listening to service users to understand the complexity of their lived experiences, including how this information can be used to improve service design and delivery.Results also highlighted the potential role of incorporating student-led clinics within models of healthcare and rehabilitation service delivery.Utilising student-led clinics can help to increase access to specialised services for underserved groups in our community, combat shortages in the health workforce, reduce burden on the public health system, and educate the future of rehabilitation professionals.

Language skills and interpersonal trust in adolescents with and without mental illness.

PURPOSE: The primary aim was to compare adolescents with mental illness and non-clinical adolescents on vocabulary, social problem-solving, trust in parents, attachment and mentalisation. A secondary aim was to investigate whether adolescents' language skills were associated with trust in parents. METHOD: Seventy-eight adolescents (16-18 years) participated in this cross-sectional quantitative study: a clinical sample (n = 28, M = 16.7 years, 19F) recruited from a mental health service and a non-clinical sample (n = 50, M = 17.0 years, 28F). Standardised language measures and self-report measures of trust in parents; communication quality; attachment; and mentalisation were used. Primary and secondary aims were addressed through independent samples t-tests and Pearson's correlation analyses, respectively. RESULT: Adolescents experiencing mental illness reported significantly poorer vocabulary, less trust in mother/father, greater attachment anxiety/avoidance, and poorer reflective functioning, than non-clinical adolescents. Expressive vocabulary of clinical (but not non-clinical) adolescents significantly negatively correlated with trust in mother (but not father). CONCLUSION: Results highlight a role for speech-language pathologists (SLPs) in supporting communication needs of adolescents with mental illness. SLPs should consider trust by: i) understanding adolescents with mental illness may have difficulty trusting them potentially impacting therapeutic engagement; and ii) delivering services in ways that might build trust, such as involving adolescents in treatment planning.

Experiences of childhood stroke and aphasia during adolescence: An analysis of YouTube videos.

PURPOSE: This study aimed to gain insight into the experiences in adolescence of people with aphasia following childhood stroke. Adolescence is a unique period of developmental changes, yet little is known about the impacts of childhood stroke and aphasia during this critical period. With YouTube emerging as an information sharing platform for adolescents, the perspectives shared by YouTubers who have experienced aphasia during adolescence can provide insight into lived experiences. METHOD: Eleven videos were identified on YouTube via keyword searches. Included videos contained YouTubers' reports of childhood stroke and impacts of aphasia and/or stroke related language difficulties during adolescence (13-17 years). Videos were transcribed verbatim and analysed with reflexive thematic analysis. RESULT: Five themes were generated from analysis. These themes revealed the various impairments adolescents experienced after their unexpected stroke, including language difficulties such as word finding, reading, and writing difficulties. The YouTubers shared sources that aided their recovery, aspirations for the future, and their desire to raise awareness of stroke and aphasia in adolescents. CONCLUSION: The perspectives identified can inform person-centred and tailored care for adolescents with aphasia after childhood stroke. Further, the need for increased public education about stroke and aphasia specifically during adolescence has been highlighted.

Participation measures that evaluate attendance and involvement for young people aged 15 to 25 years with cerebral palsy: a systematic review.

PURPOSE: To identify participation-focused measures used for young people with cerebral palsy (CP), evaluate their psychometric evidence, and map item content to the International Classification of Functioning, Disability, and Health (ICF), and family of Participation-Related Constructs (fPRC) frameworks. METHODS: Four databases (PubMed, Embase, Web of Science, CINAHL) were searched for papers that involved young people with CP aged 15 to 25 years and reported original data from a participation measure. Each measure was examined for validity, reliability, responsiveness (using the COSMIN checklist), clinical utility, the inclusion of accessible design features, self- and/or proxy-report from people with communication support needs, and item content according to ICF and fPRC. RESULTS: Of 895 papers, 80 were included for review. From these, 26 measures were identified. Seven measures (27 papers/resources) were participation-focused, capable of producing a score for participation Attendance and/or Involvement. Of these, all measured Attendance (n = 7) but fewer than half measured Involvement (n = 3). Few included studies (37%) reported including some self-report of people with communication support needs. CONCLUSIONS: Participation measures for young people with CP are evolving but require more: (i) emphasis on measurement of involvement; (ii) investigation of psychometric properties; and (iii) adaptation to enable self-report by young people with communication support needs.IMPLICATIONS FOR REHABILITATIONIdentifies seven participation-focused measures which are available for young people with cerebral palsy, all seven measure Attendance and three measure Involvement.Provides a decision-making tool to assist clinicians and researchers with the selection of participation-focused measures for young people with cerebral palsy.Recommends that more accessible self-report measures are needed which capture age-appropriate participation of young people with cerebral palsy.

Core Outcome Set Use in Poststroke Aphasia Treatment Research: Examining Barriers and Facilitators to Implementation Using the Theoretical Domains Framework.

Purpose A core outcome set (COS; an agreed minimum set of outcomes) was developed to address the heterogeneous measurement of outcomes in poststroke aphasia treatment research. Successful implementation of a COS requires change in individual and collective research behavior. We used the Theoretical Domains Framework (TDF) to understand the factors influencing researchers' use and nonuse of the Research Outcome Measurement in Aphasia (ROMA) COS. Method Aphasia trialists and highly published treatment researchers were identified from the Cochrane review of speech and language therapy for aphasia following stroke and through database searches. Participants completed a theory-informed online survey that explored factors influencing COS use. Data were analyzed using descriptive statistics and qualitative content analysis. Results Sixty-four aphasia researchers from 13 countries participated. Most participants (81%) were aware of the ROMA COS, and participants identified more facilitators than barriers to its use. The TDF domain with the highest agreement (i.e., facilitator) was "knowledge" (84% agree/strongly agree). Participants had knowledge of the measures included in the ROMA COS, their associated benefits, and the existing recommendations. The TDF domains with the least agreement (i.e., barriers) were "reinforcement" (34% agree/strongly agree); "social influences" (41% agree/strongly agree); "memory, attention, and decision processes" (45% agree/strongly agree); and "behavioral regulation" (49% agree/strongly agree). Hence, participants identified a lack of external incentives, collegial encouragement, and monitoring systems as barriers to using the ROMA COS. The suitability and availability of individual measurement instruments, as well as burden associated with collecting the COS, were also identified as reasons for nonuse. Conclusions Overall, participants were aware of the benefits of using the ROMA COS and believed that its implementation would improve research quality; however, incentives for routine implementation were reported to be lacking. Findings will guide future revisions of the ROMA COS and the development of theoretically informed implementation strategies. Supplemental Material https://doi.org/10.23641/asha.16528524.

Exploring mentalization, trust, communication quality, and alienation in adolescents.

INTRODUCTION: A growing body of evidence has demonstrated the importance of mentalization for adolescents' psychosocial functioning; however, further research is needed to understand links between mentalization and other socio-cognitive factors. The aim of this quantitative, cross-sectional study was to investigate the relationship between a teen's capacity to mentalize and three attachment-related factors: parent-teen trust, parent-teen communication, and parent-teen alienation. METHODS: In an online survey, 82 (mainly) Australian adolescents (57 female; 23 male; 2 non-binary; mean age 17.09 years) completed: i) The Children's Eyes Test, which measured mentalization; and ii) The Inventory of Parent and Peer Attachment-45, which measured trust, communication quality, and alienation. RESULTS: In teens' relationships with both mothers and fathers, trust and communication quality were significantly positively correlated (p = .001) when controlling for age and gender. Both were significantly negatively correlated with alienation (p = .001) with control variables included. Capacity to mentalize did not correlate with trust, communication quality, or alienation in relationships with either mothers or fathers (p ≤ .05). CONCLUSIONS: Possible reasons are proposed for why no relationship was found between mentalization and trust, communication quality, or alienation. Implications for future research are discussed.

Exploring Australian speech-language pathologists' use and perceptions ofnon-speech oral motor exercises.

PURPOSE: To explore Australian speech-language pathologists' use of non-speech oral motor exercises, and rationales for using/not using non-speech oral motor exercises in clinical practice. METHODS: A total of 124 speech-language pathologists practising in Australia, working with paediatric and/or adult clients with speech sound difficulties, completed an online survey. RESULTS: The majority of speech-language pathologists reported that they did not use non-speech oral motor exercises when working with paediatric or adult clients with speech sound difficulties. However, more than half of the speech-language pathologists working with adult clients who have dysarthria reported using non-speech oral motor exercises with this population. The most frequently reported rationale for using non-speech oral motor exercises in speech sound difficulty management was to improve awareness/placement of articulators. The majority of speech-language pathologists agreed there is no clear clinical or research evidence base to support non-speech oral motor exercise use with clients who have speech sound difficulties. CONCLUSIONS: This study provides an overview of Australian speech-language pathologists' reported use and perceptions of non-speech oral motor exercises' applicability and efficacy in treating paediatric and adult clients who have speech sound difficulties. The research findings provide speech-language pathologists with insight into how and why non-speech oral motor exercises are currently used, and adds to the knowledge base regarding Australian speech-language pathology practice of non-speech oral motor exercises in the treatment of speech sound difficulties. Implications for Rehabilitation Non-speech oral motor exercises refer to oral motor activities which do not involve speech, but involve the manipulation or stimulation of oral structures including the lips, tongue, jaw, and soft palate. Non-speech oral motor exercises are intended to improve the function (e.g., movement, strength) of oral structures. The majority of speech-language pathologists agreed there is no clear clinical or research evidence base to support non-speech oral motor exercise use with clients who have speech sound disorders. Non-speech oral motor exercise use was most frequently reported in the treatment of dysarthria. Non-speech oral motor exercise use when targeting speech sound disorders is not widely endorsed in the literature.

Family members' experiences and preferences for receiving aphasia information during early phases in the continuum of care.

Purpose: This study aimed to explore family members' experiences and preferences for receiving aphasia information during the early phases of post-stroke care. Method: Sixty-five family members completed an online survey structured according to five phases for caregiver support. The majority of participants were female (73.8%, n = 48) and spouses/partners (81.5%, n = 53) to a family member with aphasia. The quantitative data were analysed using descriptive statistics. The qualitative data were analysed using inductive content analysis. Result: Experiences: The majority of family members (≥50%) did not recall receiving aphasia information in four of the five phases and were not completely satisfied with information received in any phase. Preferences: Only three family members (4.6%) reported not wanting aphasia information and this pertained to the first days of care. Family members considered it useful to receive aphasia information in a written modality and via conversations with health professionals across all five phases. Family members identified difficulties obtaining aphasia information, including health professionals providing limited or inadequate information, not being aware of the term aphasia, and difficulties accessing services across care phases. Conclusion: Findings provide insight into how health professionals can better support the information needs of family members living with aphasia.

A role for epistemic trust in speech-language pathology: A tutorial paper.

This paper provides an introduction to epistemic trust for speech-language pathologists (SLPs). 'Epistemic trust' describes a specific form of trust that an individual places in others when learning about the world, particularly the social world. To date, the relevance of epistemic trust to SLP clinical practice has received little theoretical or empirical attention. The aim of this paper is to define epistemic trust and explain its relationship with parent-child attachment and mentalization which have, in turn, been linked with language development and use. Suggestions are made for ways in which SLPs may encourage epistemic trust in clients, emphasizing the need to establish strong therapeutic alliances. The authors conclude that epistemic trust is an important consideration for SLPs and that further research exploring the relationship between epistemic trust and language skills is needed to better understand the interplay of these variables and inform clinical practice.

Guiding principles for printed education materials: design preferences of people with aphasia.

The objectives of this study were to obtain the preferences of people with aphasia for the design of stroke and aphasia printed education materials (PEMs) and to compare these preferences with recommendations in the literature for developing written information for other populations. A face-to-face quantitative questionnaire was completed with 40 adults with aphasia post-stroke. The questionnaire explored preferences for: (1) the representation of numbers, (2) font size and type, (3) line spacing, (4) document length, and (5) graphic type. Most preferences (62.4%, n = 146) were for numbers expressed as figures rather than words. The largest proportion of participants selected 14 point (28.2%, n = 11) and Verdana ref (33.3%, n = 13) as the easiest font size and type to read, and a preference for 1.5 line spacing (41.0%, n = 16) was identified. Preference for document length was not related to the participant's reading ability or aphasia severity. Most participants (95.0%, n = 38) considered graphics to be helpful, with photographs more frequently reported as a helpful graphic type. The identified preferences support many of the formatting recommendations found within the literature. This research provides guiding principles for developing PEMs in preferred formats for people with aphasia.

Aphasia friendly written health information: content and design characteristics.

People with aphasia need communicatively accessible written health information. Healthcare providers require knowledge of how to develop printed education materials (PEMs) in formats that people with aphasia prefer and can read. This study aimed to explore formatting characteristics considered to be barriers and facilitators to reading PEMs. Semi-structured in-depth interviews were conducted with 40 adults with aphasia who were selected using maximum variation sampling across aphasia severity, reading ability, and time post-stroke. Participants were shown stroke and aphasia PEMs obtained from the recruiting stroke services, asked to rank them from most liked to least liked, and comment on factors that made the PEMs easier and harder to read. The majority of participants ranked the aphasia friendly stroke (56.4%, n = 22) and aphasia (87.2%, n = 34) PEMs as most liked. Forty-five facilitator and 46 barrier codes were identified using qualitative content analysis and grouped into two categories; (1) content characteristics and (2) design characteristics. Findings support many of the recommendations found within the literature for developing best practice PEMs and accessible information for other patient groups. Routine consideration of the facilitators and barriers identified will contribute to making written information more accessible to people with aphasia.