Communication intervention in Rett syndrome: a survey of speech language pathologists in Swedish health services

Abstract

Purpose: To investigate communication intervention that speech language pathologists (SLPs) provide to people with Rett syndrome. Methods: A web-based survey targeting all Swedish SLPs working with people currently receiving support from habilitation services. Results: The SLPs reportedly followed recommended practice in the following aspects: (1) Information on communicative function was collected from several sources, including observation in well-known settings and reports from the client s social network, (2) Multimodal communication was promoted and, (3) Responsive partner strategies were largely targeted in the intervention. However, few instruments or standard procedures were used and partner instruction was given informally. Most SLPs used communication aids in the intervention and their general impression of using communication aids was positive. Further, augmentative and alternative communication (AAC) was estimated to increase and clarify communicative contributions from the person. Conclusions: Communication aids were reported to have a positive influence on communicative functions. Swedish SLP services followed best practice in several aspects, but there are areas with potential for development. Tools and best practice guidelines are needed to support SLPs in the AAC process for clients with Rett syndrome.

• Implications for Rehabilitation

• Communication aids were reported to increase and clarify communicative contributions from people with Rett syndrome.

• Systematic procedures and instruments for assessment, evaluation and partner instruction were used to a small extent.

• A limited range of communicative functions were targeted in the interventions.

• There is a need for developing best practice guidelines to support SLPs in the AAC process for this population should be clients with Rett syndrome.

     

“It’s got to be more than that”. Parents and speech-language pathologists discuss training content for families with a new speech generating device

Purpose: Although parent-implemented interventions for children with a speech-generating device (SGD) have been well researched, little is known about parents’ or speech-language pathologists’ (SLPs) views around parent training content. In this project, we aimed to identify areas that parents and SLPs consider should be included in training for families with a new SGD. Methods: Seven parents of children with an SGD and three SLPs who were new to the SGD field, participated in individual semi-structured interviews. Ten SLPs experienced in SGD practice took part in two focus groups. Data were analysed using grounded theory methods. Results: Participants identified the following areas suitable for inclusion in a family SGD training package: (a) content aimed at improving acceptance and uptake of the SGD, including technical guidance, customisation and reassurance around SGD misconceptions; (b) content around aided language development and (c) home practice strategies, including responsivity, aided language stimulation and managing children’s motivation. Conclusions: Participants identified diverse training targets, many of which are unexplored in parent-training research to date. Their recounted experiences illustrate the diversity of family capacity, knowledge and training priorities, and highlight the need for collaborative planning between families and SLPs at all stages of SGD training.

• Implications for Rehabilitation

• Training needs for families with a new speech generating device (SGD) are diverse, ranging from technology-specific competencies to broader areas, such as advocacy, teamwork and goal-setting skills.

• Each family with a new SGD will have a unique profile of training needs, determined by individual learning capacity, priorities, prior knowledge and experience, as well as their child’s current communication skills and future support needs.

• Parents and speech-language pathologists (SLPs) may hold different priorities concerning family SGD training, necessitating ongoing team discussion.

     

Designing augmentative and alternative communication applications: the results of focus groups with speech-language pathologists and parents of children with autism spectrum disorder

Purpose: The purpose of this study was to gain insight from speech-language pathologists (SLPs) and parents of children with autism spectrum disorder (ASD) regarding appealing features of augmentative and alternative communication (AAC) applications.

Method: Two separate 1-hour focus groups were conducted with 8 SLPs and 5 parents of children with ASD to identify appealing design features of AAC Apps, their benefits and potential concerns. Participants were shown novel interface designs for communication mode, play mode and incentive systems. Participants responded to poll questions and provided benefits and drawbacks of the features as part of structured discussion.

Results: SLPs and parents identified a range of appealing features in communication mode (customization, animation and colour-coding) as well as in play mode (games and videos). SLPs preferred interfaces that supported motor planning and instruction while parents preferred those features such as character assistants that would appeal to their child. Overall SLPs and parents agreed on features for future AAC Apps.

Conclusion: SLPs and parents have valuable input in regards to future AAC app design informed by their experiences with children with ASD. Both groups are key stakeholders in the design process and should be included in future design and research endeavors.

• Implications for Rehabilitation

• AAC applications for the iPad are often designed based on previous devices without consideration of new features.

• Ensuring the design of new interfaces are appealing and beneficial for children with ASD can potentially further support their communication.

• This study demonstrates how key stakeholders in AAC including speech language pathologists and parents can provide information to support the development of future AAC interface designs.

• Key stakeholders may be an untapped resource in the development of future AAC interfaces for children with ASD.

     

Applying the World Report on Disability to children’s communication

Abstract

Purpose: The World Report on Disability is an important milestone in the recognition of people with disabilities; however, the Report acknowledges that people with communication difficulties may be underrepresented in estimates of disability. Consequently, this article applies the nine recommendations from the World Report on Disability to supporting children’s communication skills. Method: Australia is similar to most Minority World countries since it places high regard on articulate and literate communication. Recent large-scale Australian studies of children with speech, language and communication needs were reviewed to determine prevalence, impact and associated environmental and personal factors. Studies of met and unmet need were reviewed and discussed in relation to legislation and policies. Results: Recent years have seen improvements in the collection of and access to disability data about children’s communication, including the involvement of children in research about the impact of communication difficulties on their lives. The prevalence of speech and language impairment in children is high and is associated with poorer educational and social outcomes at school-age. Significant unmet need for services was noted, and there were differences in health, education and disability policies regarding access to services. Conclusions: Updated legislation, policies and practices are needed to more effectively support access to services to support children’s communication across health, education and disability sectors.

• Implications for Rehabilitation

• There is a high prevalence of speech and language impairment in Australian children.

• Childhood speech and language impairment (and associated communication disability) can impact educational, social, behavioural and occupational outcomes throughout life.

• Many Australian children do not have sufficient access to targeted services (including speech-language pathology) to ameliorate the impact of their communication disability.

• Formulation of a national strategy to support children children’s communication is required.

     

A systematic review of the barriers and facilitators to the provision and use of low-tech and unaided AAC systems for people with complex communication needs and their families

Abstract

Purpose: Speech-language pathologists may introduce augmentative or alternative communication (AAC) systems to people who are unable to use speech for everyday communication. Despite the benefits of AAC systems, they are significantly underutilized by the people with complex communication needs. The current review aimed to synthesize the barriers and facilitators to the provision and use of low-tech and unaided AAC systems. 

Materials and methods: Relevant literature was identified via a systematic search strategy. Included articles (n?=?43) were evaluated using the Critical Appraisal Skills Programme. Qualitative framework analysis was then completed with reference to the International Classification of Functioning, Disability, and Health (ICF). 

Results and conclusion: Most barriers and facilitators were coded as contextual factors within the ICF. Of most prominence were environmental factors, including attitudes of and supports provided by professionals, family members, and the society at large. Themes were also identified which related to the personal factors, including the user’s own attitude, socioeconomic status, and culture. Beyond these contextual factors, the remaining codes related to body functions such as cognition and movement. There are numerous barriers to the provision and use of low-tech and unaided AAC systems, which may contribute to the inadequate use of these systems by people with complex communication needs. Suggestions for reducing these barriers are presented with regards to the person with complex communication needs, their family, and the professionals involved in their care.

• Implications for Rehabilitation

• AAC systems can reduce participation restrictions for people with complex communication needs.

• The provision and use of AAC systems is influenced by environmental factors, personal factors, and features of a person’s body function.

• SLPs may need to collaborate with a large multidisciplinary team to successfully introduce AAC systems.

• SLP, teaching, and nursing students require theoretical and practical experience in AAC throughout their training to enable the provision and use of these systems.

     

Factors affecting speech pathologists’ implementation of stroke management guidelines: a thematic analysis

Abstract

Purpose: Although clinical practice guidelines can facilitate evidence-based practice and improve the health outcomes of stroke patients, they continue to be underutilised. There is limited research into the reasons for this, especially in speech pathology. This study provides the first in-depth, qualitative examination of the barriers and facilitators that speech pathologists perceive and experience when implementing guidelines. Methods: A maximum variation sample of eight speech pathologists participated in a semi-structured interview concerning the implementation of the National Stroke Foundation's Clinical Guidelines for Stroke Management 2010. Interviews were transcribed, thematically analysed and member checked before overall themes were identified. Results: Three main themes and ten subthemes were identified. The first main theme, making implementation explicit, reflected the necessity of accessing and understanding guideline recommendations, and focussing specifically on implementation in context. In the second theme, demand versus ability to change, the size of changes required was compared with available resources and collaboration. The final theme, Speech pathologist motivation to implement guidelines, demonstrated the influence of individual perception of the guidelines and personal commitment to improved practice. Conclusions: Factors affecting implementation are complex, and are not exclusively barriers or facilitators. Some potential implementation strategies are suggested. Further research is recommended.

• Implications for Rehabilitation

• In most Western nations, stroke remains the single greatest cause of disability, including communication and swallowing disabilities.

• Although adherence to stroke clinical practice guidelines improves stroke patient outcomes, guidelines continue to be underutilised, and the reasons for this are not well understood.

• This is the first in-depth qualitative study identifying the complex barriers and facilitators to guideline implementation as experienced by speech pathologists in stroke care.

• Suggested implementation strategies include local monitoring of guideline implementation (e.g. team meetings, audits), increasing collaboration on implementation projects (e.g. managerial involvement, networking), and seeking speech pathologist input into guideline development.

     

An exploration of mental capacity assessment within acute hospital and intermediate care settings in England: a focus group study

Purpose: To explore approaches to the assessment of mental capacity within acute hospital and intermediate care settings in England.

Methods: Two focus group interviews were conducted with multidisciplinary staff (n?=?13) within a large hospital trust. Data were analysed using a Framework approach.

Results: Three main themes were identified: (i) the assessment process; (ii) staff experience of assessment; (iii) assessing capacity for patients with communication difficulties. Staff identified the main patient groups, patient decisions and professionals involved in capacity assessment. They described using both formal and informal approaches to assess capacity and specific methods to identify and support the needs of patients with communication difficulties during the assessment process. Most staff reported finding capacity assessment challenging, due to time pressures, a perceived lack of knowledge or skills and encountering practice that is not consistent with legal requirements. Staff stated a need for initiatives to facilitate and improve practice.

Conclusions: These findings provide confirmatory evidence that mental capacity assessment is complex and challenging and that staff would benefit from additional support and resources to aid their practice. It provides new evidence about the methods used by staff to assess capacity, particularly for patients with communication difficulties.

• Implications for Rehabilitation

• This study contributes to our understanding of how staff assess capacity in hospital and intermediate care settings.

• Mental capacity assessment is a complex activity and many staff reported finding it challenging.

• Patients with communication difficulties need additional support during capacity assessments but may not always receive this.

• Current practice needs to be improved and staff need support and resources to achieve this.

     

Speech pathologists’ experience of involving people with stroke-induced aphasia in clinical decision making during rehabilitation

Purpose: Although client participation has been part of legislation and clinical guidelines for several years, the evidence of these recommendations being implemented into clinical practice is scarce, especially for people with communication disorders. The aim of this study was to investigate how speech pathologists experienced client participation during the process of goal-setting and clinical decision making for people with aphasia. Methods: Twenty speech pathologists participated in four focus group interviews. A qualitative analysis using Systematic Text Condensation was undertaken. Results: Analysis revealed three different approaches to client participation: (1) client-oriented, (2) next of kin-oriented and (3) professional-oriented participation. Participants perceived client-oriented participation as the gold standard. The three approaches were described as overlapping, with each having individual characteristics incorporating different facilitators and barriers. Conclusions: There is a need for greater emphasis on how to involve people with severe aphasia in goal setting and treatment planning, and frameworks made to enhance collaboration could preferably be used. Participants reported use of next of kin as proxies in goal-setting and clinical decision making for people with moderate-to-severe aphasia, indicating the need for awareness towards maintaining the clients’ autonomy and addressing the goals of next of kin.

• Implications for Rehabilitation

• Speech pathologists, and most likely other professionals, should place greater emphasis on client participation to ensure active involvement of people with severe aphasia.

• To achieve this, existing tools and techniques made to enhance collaborative goal setting and clinical decision making have to be better incorporated into clinical rehabilitation practice.

• To ensure the autonomy of the person with aphasia, as well as to respect next of kin's own goals, professionals need to make ethical considerations when next of kin are used as proxies in collaborative goal setting and clinical decision making.

     

The roles of effective communication and client engagement in delivering culturally sensitive care to immigrant parents of children with disabilities

Abstract

Purpose: Delivering pediatric rehabilitation services to immigrant parents of children with disabilities requires the practice of culturally sensitive care. Few studies have examined the specific nature of culturally sensitive care in pediatric rehabilitation, especially the notions of effective communication and client engagement. Method: Interviews were held with 42 therapists (10 social workers, 16 occupational therapists and 16 speech language pathologists) from two locations in Canada (Toronto and Quebec City). Data were analyzed using an inductive content analysis approach. Results: Study themes included the importance and nature of effective communication and client engagement in service delivery involving immigrant parents. Participants discussed using four main types of strategies to engage immigrant parents, including understanding the family situation, building a collaborative relationship, tailoring practice to the client’s situation and ensuring parents’ understanding of therapy procedures. Conclusions: The findings illuminate the importance of effective, two-way communication in providing the mutual understanding needed by therapists to engage parents in the intervention process. The findings also richly describe the engagement strategies used by therapists. Clinical implications include recommendations for strategies for therapists to employ to engage this group of parents. Furthermore, the findings are applicable to service provision in general, as engaging families in a collaborative relationship through attention to their specific situation is a general principle of good quality, family-centered care.

• Implications for Rehabilitation

• Effective communication permeates the delivery of culturally sensitive care and provides mutual understanding, which is fundamental to client engagement.

• The findings illuminate the nature of “partnership” by indicating the role of collaborative therapist strategies in facilitating engagement.

• Four main strategies facilitate effective communication and client engagement, including understanding the family situation, building a collaborative relationship, tailoring practice to the client’s situation and ensuring parents’ understanding of therapy procedures.

• Engaging families in a collaborative relationship through attention to their specific situation is a general principle of good quality, family-centered care.

     

Social participation of children age 8–12 with SLI

Purpose: Two objectives are being pursued: (1) to describe the level of social participation of children aged 8–12 presenting a specific language impairment (SLI) and (2) to identify personal and family factors associated with their level of social participation. Method: This cross-sectional study was conducted among 29 children with SLI and one of their parents. Parental stress and family adversity were measured as risk factors. The measure of life habits (LIFE-H) adapted to children aged 5-3 was used to measure social participation. Results: The assumption that social participation of these children is impaired in relation to the communication dimension was generally confirmed. The statements referring to the “communication in the community” and “written communication” are those for which the results are weaker. “Communication at home” is made easier albeit with some difficulties, while “telecommunication” is totally preserved. A high level of parental stress is also confirmed, affecting the willingness of parents to support their child’s autonomy. Conclusions: The achievement of a normal lifestyle of children with SLI is upset in many spheres of life. Methods of intervention must better reflect the needs and realities experienced by these children in their various living environments, in order to optimize social participation, and consequently, to improve their well-being and that of their families. The need to develop strategies to develop children's independence and to reduce parental stress must be recognized and all stakeholders need to be engaged in the resolution of this challenge.

• Implications for Rehabilitation

• The realization of life habits of SLI children is compromised at various levels, especially in the domain related to “communication in the community” and “written communication”.

• Speech-language pathologists must consider providing ongoing support throughout the primary years of these children and during adolescence, to promote and facilitate the continued realization of life habits of SLI persons.

• Providing ongoing support throughout the primary years and thereafter is needed to facilitate the continuing realization of life habits of SLI persons.

• Parents of children with SLI experience considerable stress in relation to the exercise of their parental roles.

• It is important to intervene and to support parents to promote autonomy for their SLI children.

     

Access to hands-on mathematics measurement activities using robots controlled via speech generating devices: three case studies

Abstract

Purpose: To examine how using a robot controlled via a speech generating device (SGD) influences the ways students with physical and communication limitations can demonstrate their knowledge in math measurement activities. Method: Three children with severe physical disabilities and complex communication needs used the robot and SGD system to perform four math measurement lessons in comparing, sorting and ordering objects. The performance of the participants was measured and the process of using the system was described in terms of manipulation and communication events. Stakeholder opinions were solicited regarding robot use. Results: Robot use revealed some gaps in the procedural knowledge of the participants. Access to both the robot and SGD was shown to provide several benefits. Stakeholders thought the intervention was important and feasible for a classroom environment. Conclusions: The participants were able to participate actively in the hands-on and communicative measurement activities and thus meet the demands of current math instruction methods.

• Implications for Rehabilitation

• Current mathematics pedagogy encourages doing hands-on activities while communicating about concepts.

• Adapted Lego robots enabled children with severe physical disabilities to perform hands-on length measurement activities.

• Controlling the robots from speech generating devices (SGD) enabled the children, who also had complex communication needs, to reflect and report on results during the activities.

• By using the robots combined with SGDs, children both exhibited their knowledge of and experienced the concepts of mathematical measurements.

     

Exploring employment readiness through mock job interview and workplace role-play exercises: comparing youth with physical disabilities to their typically developing peers

Abstract

Purpose: To assess performance differences in a mock job interview and workplace role-play exercise for youth with disabilities compared to their typically developing peers. Methods: We evaluated a purposive sample of 31 youth (15 with a physical disability and 16 typically developing) on their performance (content and delivery) in employment readiness role-play exercises. Results: Our findings show significant differences between youth with disabilities compared to typically developing peers in several areas of the mock interview content (i.e. responses to the questions: “tell me about yourself”, “how would you provide feedback to someone not doing their share” and a problem-solving scenario question) and delivery (i.e. voice clarity and mean latency). We found no significant differences in the workplace role-play performances of youth with and without disabilities. Conclusions: Youth with physical disabilities performed poorer in some areas of a job interview compared to their typically developing peers. They could benefit from further targeted employment readiness training.

• Implications for Rehabilitation

• Clinicians should:

• Coach youth with physical disability on how to “sell” their abilities to potential employers and encourage youth to get involved in volunteer activities and employment readiness training programs.

• Consider using mock job interviews and other employment role-play exercises as assessment and training tools for youth with physical disabilities.

• Involve speech pathologists in the development of employment readiness programs that address voice clarity as a potential delivery issue.

     

Influence of computerized sounding out on spelling performance for children who do and do not rely on AAC

Purpose: Spelling is an important skill for individuals who rely on augmentative and alternative communication (AAC). The purpose of this study was to investigate how computerized sounding out influenced spelling accuracy of pseudo-words. Computerized sounding out was defined as a word elongated, thus providing an opportunity for a child to hear all the sounds in the word at a slower rate. Methods: Seven children with cerebral palsy, four who use AAC and three who do not, participated in a single subject AB design. Results: The results of the study indicated that the use of computerized sounding out increased the phonologic accuracy of the pseudo-words produced by participants. Conclusion: The study provides preliminary evidence for the use of computerized sounding out during spelling tasks for children with cerebral palsy who do and do not use AAC. Future directions and clinical implications are discussed.

• Implications for Rehabilitation

• We investigated how computerized sounding out influenced spelling accuracy of pseudowords for children with complex communication needs who did and did not use augmentative and alternative communication (AAC).

• Results indicated that the use of computerized sounding out increased the phonologic accuracy of the pseudo-words by participants, suggesting that computerized sounding out might assist in more accurate spelling for children who use AAC.

• Future research is needed to determine how language and reading abilities influence the use of computerized sounding out with children who have a range of speech intelligibilityabilities and do and do not use AAC.

     

Impact of speech-generating devices on the language development of a child with childhood apraxia of speech: a case study

Purpose: The purpose of the study was to evaluate the effectiveness of speech-generating devices (SGDs) on the communication and language development of a 2-year-old boy with severe childhood apraxia of speech (CAS). Methods: An A-B design was used over a treatment period of 1 year, followed by three additional follow-up measurements, in order to evaluate the implementation of SGDs in the speech therapy of a 2;7-year-old boy with severe CAS. In total, 53 therapy sessions were videotaped and analyzed to better understand his communicative (operationalized as means of communication) and linguistic (operationalized as intelligibility and consistency of speech-productions, lexical and grammatical development) development. The trend-lines of baseline phase A and intervention phase B were compared and percentage of non-overlapping data points were calculated to verify the value of the intervention. Results: The use of SGDs led to an immediate increase in the communicative development of the child. An increase in all linguistic variables was observed, with a latency effect of eight to nine treatment sessions. Conclusions: The implementation of SGDs in speech therapy has the potential to be highly effective in regards to both communicative and linguistic competencies in young children with severe CAS.

• Implications for Rehabilitation

• Childhood apraxia of speech (CAS) is a neurological speech sound disorder which results in significant deficits in speech production and lead to a higher risk for language, reading and spelling difficulties.

• Speech-generating devices (SGD), as one method of augmentative and alternative communication (AAC), can effectively enhance the communicative and linguistic development of children with severe CAS.

     

Speech pathology services for people with aphasia: what is the current practice in Singapore?

Abstract

Purpose: This study reports on current provision of aphasia services by speech pathologists in Singapore. Method: A 44-item web-based survey was conducted looking into areas of service delivery, assessment, cultural and linguistic adaptations, clinical approaches, education of clients, recovery, goal setting and discharge as well as scope and challenges to practice. Results: A total of 36 surveys were completed representing approximately 86% of the potential target population. The intensity of aphasia services provided was well below that recommended by the literature. Participants reported embracing approaches to aphasia rehabilitation that spanned across the ICF domains. Numerous challenges were reported in providing aphasia services. These included the lack of locally relevant resources for aphasia, lack of family support and patient motivation, manpower shortages as well as barriers such as transport and cost restricting access to services. Conclusions: This research reveals several findings with considerable implications for practice planning and future direction in aphasia rehabilitation. There is a need for the development of locally relevant aphasia resources to enable comprehensive provision of aphasia services. In addition, further investigation is required to tackle the resource challenges faced by the profession and improve community support for people with aphasia.

• Implications for Rehabilitation

• Speech pathology services for aphasia in Singapore

• This article has identified the challenges of providing aphasia services in the Singapore context.

• Further investigation is required to address the key issues to improve aphasia services in Singapore.

• This includes developing locally relevant resources, looking at means like telerehabilition to tackle resource challenges, and improving community support for people with aphasia.

     

Choral singing therapy following stroke or Parkinson’s disease: an exploration of participants’ experiences

Purpose: People with stroke or Parkinson’s disease (PD) live with reduced mood, social participation and quality of life (QOL). Communication difficulties affect 90% of people with PD (dysarthria) and over 33% of people with stroke (aphasia). These consequences are disabling in many ways. However, as singing is typically still possible, its therapeutic use is of increasing interest. This article explores the experiences of and factors influencing participation in choral singing therapy (CST) by people with stroke or PD and their significant others. Method: Participants (eight people with stroke, six with PD) were recruited from a community music therapy choir running CST. Significant others (seven for stroke, two for PD) were also recruited. Supported communication methods were used as needed to undertake semi-structured interviews (total N?=?23). Results: Thematic analysis indicated participants had many unmet needs associated with their condition, which motivated them to explore self-management options. CST participation was described as an enjoyable social activity, and participation was perceived as improving mood, language, breathing and voice. Conclusions: Choral singing was perceived by people with stroke and PD to help them self-manage some of the consequences of their condition, including social isolation, low mood and communication difficulties.

• Implications for Rehabilitation

• Choral singing therapy (CST) is sought out by people with stroke and PD to help self-manage symptoms of their condition.

• Participation is perceived as an enjoyable activity which improves mood, voice and language symptoms.

• CST may enable access to specialist music therapy and speech language therapy protocols within community frameworks.