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1.
Dev Neurorehabil ; 27(3-4): 69-82, 2024.
Article in English | MEDLINE | ID: mdl-38695307

ABSTRACT

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.


Subject(s)
Cerebral Palsy , Self Report , Humans , Cerebral Palsy/psychology , Cerebral Palsy/rehabilitation , Adolescent , Male , Female , Young Adult , Adult , Social Participation
2.
Dev Med Child Neurol ; 2024 May 17.
Article in English | MEDLINE | ID: mdl-38760984

ABSTRACT

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.

3.
Int J Speech Lang Pathol ; : 1-13, 2024 Feb 20.
Article in English | MEDLINE | ID: mdl-38379211

ABSTRACT

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.

4.
Disabil Rehabil ; 46(7): 1298-1308, 2024 Apr.
Article in English | MEDLINE | ID: mdl-37029616

ABSTRACT

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.


Subject(s)
Prenatal Exposure Delayed Effects , Child , Adolescent , Humans , Female , Pregnancy , Parents , Students , Caregivers , Ambulatory Care Facilities
5.
Disabil Rehabil ; 46(7): 1330-1338, 2024 Apr.
Article in English | MEDLINE | ID: mdl-37147876

ABSTRACT

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.


Subject(s)
Cerebral Palsy , Adolescent , Young Adult , Humans , Delphi Technique , Health Personnel , Caregivers , Consensus
6.
JMIR Form Res ; 7: e47267, 2023 Oct 06.
Article in English | MEDLINE | ID: mdl-37801342

ABSTRACT

BACKGROUND: The delivery of education on pain neuroscience and the evidence for different treatment approaches has become a key component of contemporary persistent pain management. Chatbots, or more formally conversation agents, are increasingly being used in health care settings due to their versatility in providing interactive and individualized approaches to both capture and deliver information. Research focused on the acceptability of diverse chatbot formats can assist in developing a better understanding of the educational needs of target populations. OBJECTIVE: This study aims to detail the development and initial pilot testing of a multimodality pain education chatbot (Dolores) that can be used across different age groups and investigate whether acceptability and feedback were comparable across age groups following pilot testing. METHODS: Following an initial design phase involving software engineers (n=2) and expert clinicians (n=6), a total of 60 individuals with chronic pain who attended an outpatient clinic at 1 of 2 pain centers in Australia were recruited for pilot testing. The 60 individuals consisted of 20 (33%) adolescents (aged 10-18 years), 20 (33%) young adults (aged 19-35 years), and 20 (33%) adults (aged >35 years) with persistent pain. Participants spent 20 to 30 minutes completing interactive chatbot activities that enabled the Dolores app to gather a pain history and provide education about pain and pain treatments. After the chatbot activities, participants completed a custom-made feedback questionnaire measuring the acceptability constructs pertaining to health education chatbots. To determine the effect of age group on the acceptability ratings and feedback provided, a series of binomial logistic regression models and cumulative odds ordinal logistic regression models with proportional odds were generated. RESULTS: Overall, acceptability was high for the following constructs: engagement, perceived value, usability, accuracy, responsiveness, adoption intention, esthetics, and overall quality. The effect of age group on all acceptability ratings was small and not statistically significant. An analysis of open-ended question responses revealed that major frustrations with the app were related to Dolores' speech, which was explored further through a comparative analysis. With respect to providing negative feedback about Dolores' speech, a logistic regression model showed that the effect of age group was statistically significant (χ22=11.7; P=.003) and explained 27.1% of the variance (Nagelkerke R2). Adults and young adults were less likely to comment on Dolores' speech compared with adolescent participants (odds ratio 0.20, 95% CI 0.05-0.84 and odds ratio 0.05, 95% CI 0.01-0.43, respectively). Comments were related to both speech rate (too slow) and quality (unpleasant and robotic). CONCLUSIONS: This study provides support for the acceptability of pain history and education chatbots across different age groups. Chatbot acceptability for adolescent cohorts may be improved by enabling the self-selection of speech characteristics such as rate and personable tone.

7.
Int J Speech Lang Pathol ; 25(3): 403-412, 2023 06.
Article in English | MEDLINE | ID: mdl-37261422

ABSTRACT

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.


Subject(s)
Aphasia , Social Media , Stroke , Adolescent , Humans , Aphasia/etiology , Stroke/complications , Reading
8.
Disabil Rehabil ; : 1-17, 2023 May 17.
Article in English | MEDLINE | ID: mdl-37195908

ABSTRACT

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.

9.
Int J Speech Lang Pathol ; 25(4): 589-607, 2023 08.
Article in English | MEDLINE | ID: mdl-35614858

ABSTRACT

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.


Subject(s)
Communication Disorders , Trust , Female , Humans , Adolescent , Cross-Sectional Studies , Parents , Mothers
10.
Int J Lang Commun Disord ; 58(4): 1017-1028, 2023.
Article in English | MEDLINE | ID: mdl-36583427

ABSTRACT

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.


Subject(s)
Aphasia , Communication , Quality of Life , Adult , Humans , Activities of Daily Living , Aphasia/diagnosis , Aphasia/therapy , Delphi Technique , Language , Outcome Assessment, Health Care/methods , Research Design , Treatment Outcome
11.
Brain Inj ; 36(10-11): 1207-1227, 2022 09 19.
Article in English | MEDLINE | ID: mdl-36303459

ABSTRACT

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.


Subject(s)
Brain Injuries, Traumatic , Communication Disorders , Child , Humans , Brain Injuries, Traumatic/complications , Brain Injuries, Traumatic/diagnosis , Communication Disorders/diagnosis , Communication Disorders/etiology , Clinical Decision-Making , Cognition
12.
J Speech Lang Hear Res ; 64(10): 3969-3982, 2021 10 04.
Article in English | MEDLINE | ID: mdl-34491769

ABSTRACT

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.


Subject(s)
Aphasia , Stroke , Aphasia/etiology , Aphasia/therapy , Humans , Outcome Assessment, Health Care , Speech Therapy , Stroke/complications , Surveys and Questionnaires
13.
Int J Lang Commun Disord ; 56(4): 768-783, 2021 07.
Article in English | MEDLINE | ID: mdl-34048119

ABSTRACT

BACKGROUND: Prioritized research agendas are viewed internationally as an important method for ensuring that health research meets actual areas of clinical need. There is growing evidence for speech-language therapy-prioritized research agendas, particularly in disorder-specific areas. However, there are few general research priority agendas to guide speech-language therapy research. AIMS: To collaboratively develop a prioritized research agenda for an Australian public health context with clinical speech-language therapists (SLTs), academic SLTs and consumers of speech-language therapy services. METHODS & PROCEDURES: An initial stimulus list of potential research areas for prioritization was collected from SLTs via an online survey. Two categories (service delivery and expanded scope of practice) were selected from this list for prioritization due to their relevance across multiple health services. The Nominal Group Technique (NGT) was used to develop a prioritized research agenda for each of the two categories. One NGT session was conducted with each of the three participant groups (clinical SLTs, academic SLTs, consumers) for each category (total NGT sessions = six). The prioritization data for each group within each category were summed to give a single, ranked prioritized research agenda for each category. OUTCOMES & RESULTS: Two prioritized research agendas were developed. Within each agenda, SLTs and consumers prioritized a need for more research in areas related to specific practice areas (e.g., Alternative and Augmentative Communication, Communication Partner Training), as well as broader professional issues (e.g., telehealth, working with culturally and linguistically diverse families). CONCLUSIONS & IMPLICATIONS: The current findings support the need for funding proposals and targeted projects that address these identified areas of need. WHAT THIS PAPER ADDS: What is already known on this subject Evidence-based practice is a critical component of SLT practice. There is often a disconnect between the research evidence generated and areas of clinical need, and in some areas a lack of evidence. Prioritized research agendas can help drive research in areas of clinical need. What this paper adds to existing knowledge A collaborative, prioritized SLT research agenda was developed using the NGT according to the views of clinical SLTs, academic SLTs and consumers of speech-language therapy services in a conglomerate of public health services. SLTs and consumers identified a need for further research in specific areas of SLT practice as well as broader emerging professional issues What are the potential or actual clinical implications of this work? Targeted research projects funded on a large scale are required to address these identified areas of need. Other health services around the world could replicate this prioritization process to drive research in areas of clinical need.


Subject(s)
Communication Disorders , Language Therapy , Australia , Communication Disorders/therapy , Humans , Speech , Speech Therapy
14.
Dev Med Child Neurol ; 63(7): 866-873, 2021 07.
Article in English | MEDLINE | ID: mdl-33638178

ABSTRACT

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.


Subject(s)
Cerebral Palsy/physiopathology , Communication , Language , Child, Preschool , Cross-Sectional Studies , Disability Evaluation , Female , Humans , Male , Reproducibility of Results
15.
PLoS One ; 15(6): e0234662, 2020.
Article in English | MEDLINE | ID: mdl-32542008

ABSTRACT

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.


Subject(s)
Communication , Mentalization , Social Alienation/psychology , Trust/psychology , Adolescent , Female , Humans , Male , Statistics as Topic
16.
Int J Lang Commun Disord ; 55(1): 43-58, 2020 01.
Article in English | MEDLINE | ID: mdl-31553121

ABSTRACT

BACKGROUND: Speech pathology students can experience low confidence when communicating with people with aphasia. Communication partner training (CPT) is one method to increase confidence and skills when communicating with people with aphasia. There is a paucity of research exploring the effects of delivering CPT to students via technology, such as telepractice. AIMS: To explore the feasibility (acceptability, demand, implementation, practicality, limited efficacy) of a conversation with a person with aphasia via telepractice as part of a CPT programme with speech pathology students. A secondary aim was to explore the effects of feedback from the people with aphasia (i.e., patient feedback) on students' perceived confidence and proficiency in communicating with people with aphasia. METHODS & PROCEDURES: A Phase II feasibility study design was used, where both quantitative and qualitative data were collected. A total of 33 speech pathology students attended a lecture about the strategies used to communicate effectively with people with aphasia. They then participated in a 10-min conversation via videoconferencing with a person with aphasia 1 week later. Students were randomly allocated to patient feedback or no patient feedback conditions. They completed a custom designed questionnaire pre- and post-conversation. OUTCOMES & RESULTS: The study had a low recruitment rate but good retention. The programme was delivered as intended. Students reported that they found the conversations to be a positive but challenging experience. Post-conversation, statistically significant increases were found in students' self-rated confidence communicating with people with aphasia, proficiency at engaging in an everyday conversation and proficiency obtaining a case history (all p < 0.001). There were no significant differences for these ratings between the groups according to feedback condition (all p > 0.01). CONCLUSIONS & IMPLICATIONS: CPT involving a conversation with a person with aphasia via telepractice is feasible and can provide a valuable learning experience for students. Further research is required.


Subject(s)
Aphasia/therapy , Interpersonal Relations , Speech-Language Pathology/education , Telemedicine/methods , Adult , Clinical Competence , Feasibility Studies , Female , Humans , Male , Qualitative Research , Random Allocation , Students/psychology , Surveys and Questionnaires , Young Adult
17.
Int J Speech Lang Pathol ; 21(5): 470-482, 2019 10.
Article in English | MEDLINE | ID: mdl-31429322

ABSTRACT

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.


Subject(s)
Access to Information , Aphasia/therapy , Continuity of Patient Care , Family/psychology , Health Education , Language , Speech-Language Pathology/methods , Aphasia/diagnosis , Aphasia/psychology , Cross-Sectional Studies , Female , Health Care Surveys , Humans , Male , Personal Satisfaction , Professional-Family Relations , Qualitative Research , Time Factors , Treatment Outcome
18.
Dev Med Child Neurol ; 61(7): 805-812, 2019 07.
Article in English | MEDLINE | ID: mdl-30613944

ABSTRACT

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.


Subject(s)
Cerebral Palsy/classification , Communication , Adolescent , Age Factors , Cerebral Palsy/complications , Cerebral Palsy/diagnosis , Cerebral Palsy/psychology , Child , Child, Preschool , Disability Evaluation , Epilepsy/complications , Female , Health Personnel , Hearing Disorders/complications , Humans , Intelligence , Male , Motor Skills , Observer Variation , Parents , Psychometrics , Reproducibility of Results , Vision Disorders/complications
19.
Disabil Rehabil ; 41(12): 1463-1474, 2019 06.
Article in English | MEDLINE | ID: mdl-29376445

ABSTRACT

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.


Subject(s)
Attitude of Health Personnel , Dysarthria/therapy , Exercise Therapy , Speech Sound Disorder/therapy , Speech Therapy/methods , Australia , Humans , Surveys and Questionnaires
20.
Disabil Rehabil ; 41(5): 564-573, 2019 03.
Article in English | MEDLINE | ID: mdl-29130767

ABSTRACT

PURPOSE: This study synthesised the findings of three separate consensus processes exploring the perspectives of key stakeholder groups about important aphasia treatment outcomes. This process was conducted to generate recommendations for outcome domains to be included in a core outcome set for aphasia treatment trials. MATERIALS AND METHODS: International Classification of Functioning, Disability, and Health codes were examined to identify where the groups of: (1) people with aphasia, (2) family members, (3) aphasia researchers, and (4) aphasia clinicians/managers, demonstrated congruence in their perspectives regarding important treatment outcomes. Codes were contextualized using qualitative data. RESULTS: Congruence across three or more stakeholder groups was evident for ICF chapters: Mental functions; Communication; and Services, systems, and policies. Quality of life was explicitly identified by clinicians/managers and researchers, while people with aphasia and their families identified outcomes known to be determinants of quality of life. CONCLUSIONS: Core aphasia outcomes include: language, emotional wellbeing, communication, patient-reported satisfaction with treatment and impact of treatment, and quality of life. International Classification of Functioning, Disability, and Health coding can be used to compare stakeholder perspectives and identify domains for core outcome sets. Pairing coding with qualitative data may ensure important nuances of meaning are retained. Implications for rehabilitation The outcomes measured in treatment research should be relevant to stakeholders and support health care decision making. Core outcome sets (agreed, minimum set of outcomes, and outcome measures) are increasingly being used to ensure the relevancy and consistency of the outcomes measured in treatment studies. Important aphasia treatment outcomes span all components of the International Classification of Functioning, Disability, and Health. Stakeholders demonstrated congruence in the identification of important outcomes which related Mental functions; Communication; Services, systems, and policies; and Quality of life. A core outcome set for aphasia treatment research should include measures relating to: language, emotional wellbeing, communication, patient-reported satisfaction with treatment and impact of treatment, and quality of life. Coding using the International Classification of Functioning, Disability, and Health, presents a novel methodology for the comparison of stakeholder perspectives to inform recommendations for outcome constructs to be included in a core outcome set. Coding can be paired with qualitative data to ensure nuances of meaning are retained.


Subject(s)
Aphasia/rehabilitation , International Classification of Functioning, Disability and Health , Quality of Life , Aphasia/psychology , Disability Evaluation , Disabled Persons/psychology , Disabled Persons/rehabilitation , Humans , Mental Health , Outcome Assessment, Health Care/methods , Treatment Outcome
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