Measuring impact of augmentative and alternative communication interventions: adapting the family impact of assistive technology scale for augmentative and alternative communication (FIATS-AAC-No) for use in Norway.

Individuals who require augmentative and alternative communication (AAC) comprise a heterogeneous group, but all need follow-up to assure the appropriateness of implemented interventions. To enable this, outcome measures such as the Family Impact of Assistive Technology Scale for Augmentative and Alternative Communication (FIATS-AAC) may be used. However, instrument must be adapted to the language and culture in which they are to be used. The aim of the study was to therefore to explore the suitability of the Norwegian short-form version (FIATS-AAC-No) by investigating the reliability, validity, and perceived clinical usefulness. The study utilized a mixed-method design, including an online survey and two small group interviews. In total, 47 parents responded to the online survey. The online survey was comprised of three questionnaires, where FIATS-AAC-No was one of the questionnaires. Two group interviews, with two parents and two clinicians, were conducted. Findings show satisfactorily reliability, construct validity and content validity. The interviews revealed a need for specification of key concepts, that there are challenges involved in being parents of a child needing AAC, and that completing questionnaires was perceived as stressful by many parents. The clinicians viewed the FIATS-AAC-No as a potentially useful clinical tool and expressed that it brought to attention the need for follow-up parents have.

Implementation of the C-BiLLT, an accessible instrument to assess language comprehension in children with limited motor and speech function: an international clinician survey.

This study assessed implementation of the Computer-based Instrument for Low-motor Language Testing (C-BiLLT). The C-BiLLT is an accessible language comprehension assessment tool originally developed for children with cerebral palsy and complex communication needs. The purpose of the current study was to understand the clinical contexts in which the C-BiLLT is used in the Netherlands, Belgium, and Norway and assess barriers and facilitators to implementation. An online survey was distributed to rehabilitation clinicians working in the Netherlands, Dutch-speaking parts of Belgium, and Norway. A total of 90 clinicians reported their training in and use of the C-BiLLT; assessed its acceptability, appropriateness, and feasibility; and commented on perceived barriers as well as advantages of the tool. Acceptability, appropriateness, and feasibility were all rated highly. The C-BiLLT was used with various populations and age groups but most often with children who were younger than 12 years of age, and those with cerebral palsy. The main implementation facilitator was clinicians' motivation; the main barriers were related to resources and complexity of cases. Findings suggest implementation of new assessment tools is an ongoing process that should be monitored following initial training, in order to understand clinical contexts in which the tools are being used.

Provision of augmentative and alternative communication interventions to Norwegian preschool children with cerebral palsy: are the right children receiving interventions?

Preschool children with cerebral palsy (CP) with no or unintelligible speech need augmentative and alternative communication (AAC), but not all children needing AAC have access to it. This study describes the use and perceived benefit of AAC and explores factors associated with receiving AAC interventions. Using a cross-sectional design, we combined parent-reported data with data from the Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP). Communication, speech and hand function was classified according to the Communication Function Classification System (CFCS), Viking Speech Scale (VSS), and Manual Ability Classification System (MACS), accordingly. The need for AAC was defined as Levels III-V on the CFCS, without simultaneous classification at VSS Level I, and/or Levels III-IV on VSS. Parents reported on child- and family-directed AAC interventions using the Habilitation Services Questionnaire. Of the 95 children (42 females) with CP (M = 39.4 months, SD = 10.3), 14 had communication aids. Of the 35 children (31.4%) defined as needing AAC, 11 had been provided with communication aids. Parents of children with a communication aid reported satisfaction with and frequent use of the aid. Children at MACS Level III-V (OR = 3.4, p = .02) or with epilepsy (OR = 8.9, p < .01) were most likely to have received an AAC intervention. The low proportion of children receiving communication aids indicates an unmet need for AAC interventions among preschool children with CP.

Norwegian paediatric habilitation centres judge their own competence on cerebral visual impairment as limited.

AIM: Cerebral visual impairment (CVI), a frequently occurring functional impairment in children with neurodevelopmental disorders, leads to communicative, social and academic challenges. In Norway, children with neurodevelopmental disorders are assessed at paediatric habilitation centres. Our aims were to explore how CVI is identified, how paediatric habilitation centres assess their CVI competence and the reported prevalence of CVI among children with cerebral palsy. METHODS: An electronic questionnaire was sent to all 19 Norwegian paediatric habilitation centre leaders in January 2022. The results were analysed quantitatively and qualitatively. The prevalence of CVI among children with cerebral palsy was estimated using register-based data. RESULTS: The questionnaire was answered by 17. Only three judged their habilitation centre as having sufficient competence on CVI. None of the centres used screening questionnaires systematically, and 11 reported that CVI assessment was not good enough. Awareness that a child may have CVI typically occurred during examinations for other diagnoses. The prevalence of CVI among children with cerebral palsy was only 8%, while CVI status was unknown in 33%. CONCLUSION: Better knowledge and assessment of CVI at Norwegian paediatric habilitation centres are needed. CVI appears to be often overlooked in children with neurodevelopmental disorders.

The implementation of systematic monitoring of cognition in children with cerebral palsy in Sweden and Norway.

PURPOSE: Children with cerebral palsy (CP) are at risk of cognitive impairments and need to be cognitively assessed to allow for individualized interventions, if applicable. Therefore, a systematic protocol for the follow-up of cognition in children with CP, CPCog, with assessments offered at five/six and 12/13 years of age, was developed. This report presents and discusses assessment practices in Sweden and Norway following the introduction of CPCog and a quality improvement project in Norway aimed at increasing the number of children offered cognitive assessments. MATERIALS AND METHODS: A questionnaire investigating assessment practices was sent to pediatric habilitation centers in Sweden and Norway. In Norway, the habilitation centers also participated in a quality improvement project aimed at increasing adherence to the CPCog protocol. RESULTS: Of the respondents, 64-70% report that they assess cognition in children with all degrees of motor impairment, and 70-80% assess at the ages recommended in CPCog. Following the quality improvement project in Norway, the percentage of children assessed increased from 34 to 62%. CONCLUSIONS: The findings illustrate that the provision of information is not sufficient to change practice. Implementation of new re/habilitation procedures is aided by targeting health care practices individually.Implications for rehabilitationChildren with cerebral palsy (CP) have increased risk of cognitive impairments that require intervention.Assessments of cognition should be offered to all children with CP because the nature of cognitive impairments may vary.Introducing a follow-up protocol of how and when to perform cognitive assessments is a step towards ensuring equal access to the services for all children with CP.A quality improvement project might be a viable method for implementing a protocol into everyday clinical practice.

Cognitive assessments among children with cerebral palsy in Sweden and the use of augmentative and alternative communication and interpreters: a cross-sectional registry study.

PURPOSE: Children with cerebral palsy (CP) have an increased risk of cognitive difficulties and should be offered cognitive assessments. In Sweden, the CPCog protocol recommends children with CP undergo cognitive assessments at the start of primary and secondary school. To assess children with CP can be challenging, in particular when children are non-vocal or do not speak the local language. In such instances, augmentative and alternative communication (AAC) and qualified medical interpreters should be considered. The purpose of this study was to monitor the implementation and equitable delivery of the CPCog protocol in Sweden between the years 2017-2020. MATERIALS AND METHODS: In this cross-sectional study, registry data were extracted from the combined follow-up program and national registry for individuals with CP (CPUP), and a convenience sample of psychologists responded to an online survey. RESULTS AND CONCLUSIONS: Each year, less than 5% of eligible children had registered cognitive assessments in CPUP. There was underuse of AAC during assessments and a discrepancy between the registered versus reported use of interpreters. Psychologists perceived AAC as more reliable for cognitive assessments than interpreters. Greater availability of and capacity to offer cognitive assessments in other formats and languages could help increase test accessibility for all children with CP.Implications for RehabilitationThe cognitive assessment of children with cerebral palsy (CP) is a complex but important issue within disability and re/habilitation.Individualized cognitive assessments should be offered and carried out by psychologists.Rehabilitation centers should strive to be inclusive through reliable test adaptations for functional abilities, means of communication, and language.Greater availability of- and capacity to offer cognitive assessments in more formats and languages could help increase test accessibility for children with disabilities.

Aided communication, mind understanding and co-construction of meaning.

Mind understanding allows for the adaptation of expressive language to a listener and is a core element when communicating new information to a communication partner. There is limited knowledge about the relationship between aided language and mind understanding. This study investigates this relationship using a communication task. The participants were 71 aided communicators using graphic symbols or spelling for expression (38/33 girls/boys) and a reference group of 40 speaking children (21/19 girls/boys), aged 5;0-15;11 years. The task was to describe, but not name, drawings to a communication partner. The partner could not see the drawing and had to infer what was depicted from the child's explanation. Dyads with aided communicators solved fewer items than reference dyads (64% vs 93%). The aided spellers presented more precise details than the symbol users (46% vs 38%). In the aided group, number of correct items correlated with verbal comprehension and age.

Neuropsychological functioning in survivors of childhood medulloblastoma/CNS-PNET: The role of secondary medical complications.

Objective To investigate the long-term cognitive consequences of malignant pediatric brain tumor and its treatment, and factors explaining variability in cognitive functioning among survivors. Method: A geographical cohort of survivors of pediatric medulloblastoma (MB) and supratentorial primitive neuroectodermal tumor (CNS-PNET), treated between 1974 and 2013, was invited to participate. Of the 63 surviving patients, 50 (79%) consented to participation. The participants were tested with a battery of neuropsychological tests covering a wide age range. Verbal cognition, nonverbal cognition, processing speed, attention, memory, executive functioning, and manual dexterity were assessed. The participants were between 5:5 and 51:11 years of age at time of assessment. Assessments took place on average 19 years after primary tumor resective surgery. Results: One participant had a severe intellectual disability. For the rest, IQ varied from 52 to 125, with a mean score of 88.0 (SD 19.7). Twenty-eight (56%) of the participants had full-scale IQ scores in the age-average range or above. Gender, age at operation, time since operation, the presence of secondary medical complications, and treatment variables explained 46% of the variability in IQ scores, F(4,44) = 9.5, p<.001. The presence of endocrine insufficiency in combination with either epilepsy and/or hydrocephalus was associated with lowered IQ, lowered processing speed, and memory impairments. Conclusion: Patients treated for childhood MB and CNS-PNET have a lifelong risk of medical sequelae, including impaired cognitive functioning. This study adds to the literature by demonstrating the importance of following neuropsychological functioning closely, especially processing speed, learning, and memory, in survivors who have multiple secondary medical complications.

Systematic Monitoring of Cognition for Adults With Cerebral Palsy-The Rationale Behind the Development of the CPCog-Adult Follow-Up Protocol.

Cerebral palsy (CP) comprises a heterogeneous group of conditions recognized by disturbances of movement and posture and is caused by a non-progressive injury to the developing brain. Birth prevalence of CP is about 2-2.5 per 1,000 live births. Although the motor impairment is the hallmark of the diagnosis, individuals with CP often have other impairments, including cognitive ones. Cognitive impairments may affect communication, education, vocational opportunities, participation, and mental health. For many years, CP has been considered a "childhood disability," but the challenges continue through the life course, and health issues may worsen and new challenges may arise with age. This is particularly true for cognitive impairments, which may become more pronounced as the demands of life increase. For individuals with CP, there is no one-to-one correlation between cognition and functioning in other areas, and therefore, cognition must be individually assessed to determine what targeted interventions might be beneficial. To facilitate this for children with CP, a systematic follow-up protocol of cognition, the CPCog, has been implemented in Norway and Sweden. However, no such protocol currently exists for adults with CP. Such discontinuity in healthcare services that results from lack of follow-up of cognitive functioning and subsequent needs for adjustments and interventions makes transition from pediatric to adult healthcare services challenging. As a result, a protocol for the surveillance of cognition in adults with CP, the CPCog-Adult, has been developed. It includes assessment of verbal skills, non-verbal reasoning, visual-spatial perception, and executive functioning. It is recommended to perform these assessments at least once in young adulthood and once in the mid-fifties. This report describes the process of developing the CPCog-Adult, which has a three-fold purpose: (1) to provide equal access to healthcare services to enable the detection of cognitive impairments; (2) to provide interventions that increase educational and vocational participation, enhance quality of life, and prevent secondary impairments; and (3) to collect systematic data for research purposes. The consent-based registration of data in the well-established Swedish and Norwegian national CP registries will secure longitudinal data from childhood into adulthood.

Increased heart rate functions as a signal of acute distress in non-communicating persons with intellectual disability.

Intellectual disability (ID) affects approximately 1% of the population. Some patients with severe or profound ID are essentially non-communicating and therefore risk experiencing pain and distress without being able to notify their caregivers, which is a major health issue. This real-world proof of concept study aimed to see if heart rate (HR) monitoring could reveal whether non-communicating persons with ID experience acute pain or distress in their daily lives. We monitored HR in 14 non-communicating participants with ID in their daily environment to see if specific situations were associated with increased HR. We defined increased HR as being > 1 standard deviation above the daily mean and lasting > 5 s. In 11 out of 14 participants, increased HR indicated pain or distress in situations that were not previously suspected to be stressful, e.g. passive stretching of spastic limbs or being transported in patient lifts. Increased HR suggesting joy was detected in three participants (during car rides, movies). In some situations that were previously suspected to be stressful, absence of HR increase suggested absence of pain or distress. We conclude that HR monitoring may identify acute pain and distress in non-communicating persons with ID, allowing for improved health care for this patient group.

Gaining super control: Psychoeducational group intervention for adolescents with mild intellectual disability and their parents.

Adolescents with intellectual disability experience psychological and social challenges in their transition to adulthood. Knowledge about the diagnosis and insight into own strengths and difficulties can help them manage the limitations and barriers they face, but suitable interventions with this purpose are scarce. The present paper presents a psychoeducational group intervention, The Super Control Project, for adolescents (15-17 years old) with mild intellectual disability (n = 23) and their parents. In a pre-post design, adolescent outcome data was obtained through teacher and parent questionnaires, and interviews with the adolescents. Parents and adolescents also evaluated the interventions' usefulness. Results indicated positive impact on participants' understanding of the diagnosis, managing of everyday challenges, and social networking. The intervention seemed to fit the participants' needs and abilities. The study encourages further implementation and rigorous evaluation.

Assessing language comprehension in motor impaired children needing AAC: validity and reliability of the Norwegian version of the receptive language test C-BiLLT.

Children with severe motor impairments who need augmentative and alternative communication (AAC) comprise a heterogeneous group with wide variability in cognitive functioning. Assessment of language comprehension will help find the best possible communication solution for each child, but there is a lack of appropriate instruments. This study investigates the reliability and validity of the Norwegian version of the spoken language comprehension test C-BiLLT (computer-based instrument for low motor language testing) - the C-BiLLT-Nor - and whether response modality influences test results. The participants were 238 children with typical development aged 1;2 to 7;10 (years/months) who were assessed with the C-BiLLT-Nor and tests of language comprehension and non-verbal reasoning. There was excellent internal consistency and good test-retest reliability. Tests of language comprehension and non-verbal reasoning correlated significantly with the C-BiLLT-Nor, indicating good construct validity. Factor analysis yielded a two-factor solution, suggesting it as a measure of receptive vocabulary, grammar, and overall language comprehension. No difference in results could be related to response mode, implying that gaze pointing is a viable option for children who cannot point with a finger. The C-BiLLT-Nor, with norms from 1;6-7;6 is a reliable measure of language comprehension.

Cognitive functioning in children with cerebral palsy.

Children with cerebral palsy (CP) have an increased risk of cognitive impairments. This narrative review of the literature discusses assessment of cognition in children with CP, presents the most salient characteristics of cognitive functioning pertaining to each subtype, and discusses the relationships between brain injury, functioning, and intervention from a developmental perspective. A search for original studies of cognitive functioning in children with different subtypes of CP was performed. The search resulted in 81 unique hits. There were few studies with a representative sample of children with CP where all participants were individually assessed. Cognitive functioning in children with the most severe motor impairments were often assumed and not assessed. Furthermore, there was a confounding of IQ below 70 and intellectual disability, possibly leading to an overestimation of the prevalence of intellectual disability. Longitudinal neuropsychological studies, including also very young children and those with the most severe speech and motor impairments, as well as intervention studies, are called for. WHAT THIS PAPER ADDS: Few studies have assessed cognition in a representative sample of children with cerebral palsy. Cognition in children with severe motor impairment is often assumed, not assessed. Lack of assessment may lead to overestimating the prevalence of intellectual disability. Lowered cognitive functioning in older children highlights the need for longitudinal studies.

Unmet rehabilitation needs in 86% of Norwegian paediatric embryonal brain tumour survivors.

AIM: To study incidence, types and degrees of late effects in a geographical cohort of paediatric medulloblastoma and central nervous system primitive neuroectodermal tumour (CNS-PNET) survivors, and identify the need for rehabilitation. METHODS: Between 1974 and 2013, 63 patients survived treatment for paediatric medulloblastoma and CNS-PNET at Oslo University Hospital, Norway. Of these, 50 accepted invitation and were included in this study. RESULTS: Median follow-up was 20 years (range 3.2-41), and 96% of participants had developed late effects. Cognitive impairment was found in 72%, reduced hearing in 68%, endocrine deficits in 66%, epilepsy in 32% and another 30% had been diagnosed with one or more second primary neoplasms. Radiotherapy significantly increased risk of secondary primary neoplasms and endocrinological deficits, chemotherapy risk of ototoxicity and endocrinological deficits, and epilepsy was found significantly more often in CNS-PNET than medulloblastoma patients. Epilepsy was the main cause of cognitive impairments (full-scale IQ) in our study. 86% of participants had an unmet rehabilitation need. CONCLUSION: Significant late effects and unmet rehabilitation needs were documented in the large majority of survivors after treatment for paediatric medulloblastoma and CNS-PNET.

Improving the Health of Individuals With Cerebral Palsy: Protocol for the Multidisciplinary Research Program MOVING ON WITH CP.

BACKGROUND: Cerebral palsy (CP) is one of the most common early onset disabilities globally. The causative brain damage in CP is nonprogressive, yet secondary conditions develop and worsen over time. Individuals with CP in Sweden and most of the Nordic countries are systematically followed in the national registry and follow-up program entitled the Cerebral Palsy Follow-Up Program (CPUP). CPUP has improved certain aspects of health care for individuals with CP and strengthened collaboration among professionals. However, there are still issues to resolve regarding health care for this specific population. OBJECTIVE: The overall objectives of the research program MOVING ON WITH CP are to (1) improve the health care processes and delivery models; (2) develop, implement, and evaluate real-life solutions for Swedish health care provision; and (3) evaluate existing health care and social insurance benefit programs and processes in the context of CP. METHODS: MOVING ON WITH CP comprises 9 projects within 3 themes. Evaluation of Existing Health Care (Theme A) consists of registry studies where data from CPUP will be merged with national official health databases, complemented by survey and interview data. In Equality in Health Care and Social Insurance (Theme B), mixed methods studies and registry studies will be complemented with focus group interviews to inform the development of new processes to apply for benefits. In New Solutions and Processes in Health Care Provision (Theme C), an eHealth (electronic health) procedure will be developed and tested to facilitate access to specialized health care, and equipment that improves the assessment of movement activity in individuals with CP will be developed. RESULTS: The individual projects are currently being planned and will begin shortly. Feedback from users has been integrated. Ethics board approvals have been obtained. CONCLUSIONS: In this 6-year multidisciplinary program, professionals from the fields of medicine, social sciences, health sciences, and engineering, in collaboration with individuals with CP and their families, will evaluate existing health care, create conditions for a more equal health care, and develop new technologies to improve the health care management of people with CP. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/13883.

Constructing narratives to describe video events using aided communication.

Narratives are a pervasive form of discourse and a rich source for exploring a range of language and cognitive skills. The limited research base to date suggests that narratives generated using aided communication may be structurally simple, and that features of cohesion and reference may be lacking. This study reports on the analysis of narratives generated in interactions involving aided communication in response to short, silent, video vignettes depicting events with unintended or unexpected consequences. Two measures were applied to the data: the Narrative Scoring Scheme and the Narrative Analysis Profile. A total of 15 participants who used aided communication interacted with three different communication partners (peers, parents, professionals) relaying narratives about three video events. Their narratives were evaluated with reference to narratives of 15 peers with typical development in response to the same short videos and to the narratives that were interpreted by their communication partners. Overall, the narratives generated using aided communication were shorter and less complete than those of the speaking peers, but they incorporated many similar elements. Topic maintenance and inclusion of scene-setting elements were consistent strengths. Communication partners offered rich interpretations of aided narratives. Relative to the aided narratives, these interpreted narratives were typically structurally more complete and cohesive and many incorporated more elaborated semantic content. The data reinforce the robust value of narratives in interaction and their potential for showcasing language and communication achievements in aided communication.

Vocabulary comprehension and strategies in name construction among children using aided communication.

Vocabulary learning reflects the language experiences of the child, both in typical and atypical development, although the vocabulary development of children who use aided communication may differ from children who use natural speech. This study compared the performance of children using aided communication with that of peers using natural speech on two measures of vocabulary knowledge: comprehension of graphic symbols and labeling of common objects. There were 92 participants not considered intellectually disabled in the aided group. The reference group consisted of 60 participants without known disorders. The comprehension task consisted of 63 items presented individually in each participant's graphic system, together with four colored line drawings. Participants were required to indicate which drawing corresponded to the symbol. In the expressive labelling task, 20 common objects presented in drawings had to be named. Both groups indicated the correct drawing for most of the items in the comprehension tasks, with a small advantage for the reference group. The reference group named most objects quickly and accurately, demonstrating that the objects were common and easily named. The aided language group named the majority correctly and in addition used a variety of naming strategies; they required more time than the reference group. The results give insights into lexical processing in aided communication and may have implications for aided language intervention.

Visual-spatial cognition in children using aided communication.

Children with severe motor impairments are restricted in their manipulation and exploration of objects, but little is known about how such limitations influence cognitive development. This study investigated visual-constructional abilities in 75 children and adolescents, aged 5;0-15;11 (years;months), with severe speech impairments and no intellectual disabilities (aided group) and in 56 children and adolescents with typical development (reference group). Verbal comprehension, non-verbal reasoning, and visual-spatial perception were assessed with standardized tests. The task of the participants was to verbally instruct communication partners to make physical constructions identical to models that the partner could not see. In the aided group, 55.7% of the constructions were identical to the models participants described, compared to 91.3% in the reference group. In the aided group, test results explained 51.4% of the variance in construction errors. The results indicate that the participants' language skills were decisive for construction success. Visual-perceptual challenges were common among the aided communicators, and their instructions included little information about size and spatial relations. This may reflect less experience with object manipulation and construction than children with typical development, and using aided communication to instruct others to make three-dimensional constructions. The results imply a need for interventions that compensate for the lack of relevant experience.

Communication aid provision and use among children and adolescents developing aided communication: an international survey.

A fundamental requirement of a supportive language development for young children who need aided communication is that an aided communication system is made available and its use is supported. There is limited information about the age at which children are typically provided with a communication aid or about how aided communication is used in everyday situations. Using questionnaire-based interview data, this study investigated (a) the pattern of provision of communication aids to 84 children and adolescents, (b) parents' and professionals' evaluation of the quality of communication across contexts, and (c) availability and use of aided communication in these contexts. The age at which the participants received their first aided system varied considerably across the group; however, most were considerably older than the age at which children with typical development usually begin to speak. Parents and professionals rated most everyday situations as good communication situations but reported that the participants did not have their main form of expressive language available in many of these situations, or did not use it much. Parents rated their child's education in relation to aided language positively, but many professionals indicated that they had limited knowledge about the participant's use of aided communication outside of the school environment, or about the parents' attitudes. The study gives insights into the language learning situation of children and adolescents who develop aided communication.