'To have a plan': teachers' perceptions of working with a literacy instruction combining phonics and comprehension applications for students with intellectual disability and communication difficulties.

PURPOSE: Students with intellectual disabilities (ID) typically have difficulties with literacy learning, often not acquiring basic literacy skills. Research and practical experience indicate that when these students are provided with evidence-based instruction, including comprehension as well as phonemic strategies, literacy may develop. METHODS: In this study, four pairs of teachers were interviewed regarding their perceptions of a 12-week digital literacy intervention that focused on both phonics and comprehension strategies. The intervention aimed to enhance literacy and communication development in students aged 7-21, who had mild to severe ID. RESULTS AND CONCLUSION: Four themes were identified in the analysis. It was seen that the teachers found it valuable to have access to two apps accessing and facilitating the use of different literacy strategies in meeting the needs of individual students. This digital format was also perceived as positive, contributing to creating a supportive and systematic learning environment that enhanced and increased literacy learning. The teachers recurringly also talked about the positive influence of participating in research, lifting the strong focus, and positive attention as very important for both teachers and students.

Turn-taking and communication modes of students and staff in group activities at non-inclusive schools for students with intellectual disability.

Most students with intellectual and communicative disability who rely on augmentative and alternative communication (AAC) attend non-inclusive school settings. Little is known about turn-taking and the use of various communication modes in groups of students and staff in this context. Previous studies on single students with intellectual disability in various school settings have found that staff tend to dominate interactions and augmented communication modes are used more during structured than unstructured activities. The present study explored turn-taking contributions and communication modes in whole groups of students and staff in non-inclusive school settings in Sweden. Video observations of 33 students and 30 school staff were conducted in seven classrooms during one structured activity (circle time) and one unstructured activity (leisure time). Turn-taking contributions and communication modes were examined when comparing students and staff and when comparing the two activities. Findings revealed that staff dominated the interactions and augmented communication modes were used less during leisure time than circle time. Notably, aided augmented communication modes, particularly speech-output technologies, were used sparsely. Findings of this study highlight the importance of supporting staff members in applying partner strategies and incorporating augmented input, especially aided augmented input, across various group activities at school.

Parental perceptions of social life before and after attending a parent training program for children with complex communication needs: the ComAlong example.

Parent training programs aimed at improving language outcomes for children with complex communication needs have predominantly been evaluated on child-centered outcomes and less often on the impact on social life or parental well-being. This study examined parent perceptions of social life before and after ComAlong, a group intervention providing parents with knowledge and training in responsive communication, environmental-milieu teaching strategies and augmentative and alternative communication (AAC). Parents (N = 467) completed questionnaires during the first and last sessions of ComAlong groups held in Sweden 2012 to 2018. Main outcome measure was change in the Social Life Scale from the Family Impact Questionnaire. Associations between this measure and demographic factors of parents and children were analyzed, along with reported change in parents' use of AAC. Pre-post comparisons revealed small significant positive changes in perceived impact of social life following intervention. The magnitude of the positive change was larger among parents of children with non-syndromic diagnoses and parents of children with autism spectrum disorder or attention deficit hyper activity disorder (ADHD). Differences in social life impact was not associated with parents' gender, language proficiency, age, or educational background. In conclusion, communication-focused parent training programs can have a positive impact on social family life and may thereby influence children's participation.

Following children with severe or profound intellectual and multiple disabilities and their mothers through a communication intervention: single-case mixed-methods findings.

There is limited research targeting communication interventions for children with severe/profound intellectual and multiple disabilities. This study addressed outcomes from a communication course for parents of children with severe/profound intellectual and multiple disabilities and follows up on a previous publication by Rensfeldt Flink et al. (2020). Potential observable changes in the children's and parents' communicative behavior were studied as well as the parents' experiences of the intervention process and the effect of the course on parent-child communication. A mixed-methods design with a case-study framework was used. Two mother-child dyads participated. Data were collected before, during, and after the course. Video-recorded repeated play interactions by the dyads were coded and analyzed for the mothers' responsivity and use of augmentative and alternative communication and the children's interactive engagement. Longitudinal interview data from the mothers were analyzed thematically. No clear signs of behavioral change were observed in the coded video data. However, thematic analyses showed that the mothers experienced changes to communicative behaviors. Moreover, the course affected both mothers' reasoning about communication with their child and their child's communicative needs. The mothers' narratives contributed insights into how reflective processes might guide action in parent-mediated communication interventions. The implications for research and clinical practice are discussed.

Augmentative and alternative communication with children with severe/profound intellectual and multiple disabilities: speech language pathologists' clinical practices and reasoning.

PURPOSE: Augmentative and alternative communication (AAC) is recommended to be included in communication interventions directed at children/youth with severe/profound intellectual and multiple disabilities (S/PIMD). Even so, the evidence base for AAC practices with children with S/PIMD is limited. Also, little is known about how frequently AAC is implemented with this target group, which AAC tools and methods are applied, and the related clinical reasoning of speech-language pathologists (SLPs). This study aimed to explore SLPs' beliefs, clinical reasoning and practices in relation to AAC implementation with children/youth with S/PIMD. MATERIALS AND METHODS: In this sequential, mixed-methods study, 90 SLPs working with children with disabilities within habilitation services in Sweden participated in an online survey. The survey answers were statistically analysed. Subsequently, focus group data were collected from seven SLPs and analysed using thematic analysis. RESULTS AND CONCLUSIONS: Despite AAC being highly prioritized, SLPs found it challenging and complex to implement with this target group. A wide variety of AAC methods and tools were considered and implemented. Clinical decision-making was a balancing act between competing considerations and was mainly guided by the SLPs' individual, clinical experiences. The resources, engagement and wishes of the social network surrounding the child were considered crucial for clinical decision-making on AAC. Implications for research and practice are discussed.Implications for rehabilitationSpeech-language pathologists (SLPs) seemingly find a wide variety of Augmentative and Alternative Communication (AAC), ranging from unaided methods to assistive technology of various complexity, to be potentially suitable for children/youth with severe/profound intellectual and multiple disabilities (S/PIMD).The motivation and preferences of the social network surrounding the child with S/PIMD seem to influence SLPs' clinical decision-making on AAC to a high degree. Sometimes this may be considered an even more important factor than the abilities of the child.SLPs' clinical decision-making on AAC for children/youth is guided by their individual, clinical experience to a high degree.An increase in family oriented AAC intervention research targeting individuals with S/PIMD could potentially strengthen the association between research and the current, experience-based clinical practice.

Examining perceptions of a communication course for parents of children with profound intellectual and multiple disabilities.

The overall aim was to examine participants' perceptions of a communication course as held for parents of children with profound intellectual and multiple disabilities. The course curriculum included responsive strategies and augmentative and alternative communication. The research questions addressed the favourability, changes in parents' or children's communication and appreciated or unappreciated course features. Twenty-two written course evaluations were analysed. The mean scores for ratings were compared with ratings in a previous study, including those of parents of children with generally milder disabilities. Comments and answers to open-ended questions were analysed using thematic analysis. Participants were slightly more satisfied with the course as compared with parents who had children with milder disabilities. The thematic analysis suggested increased parental responsiveness after the course. Perceptions of augmentative and alternative communication varied. It was unclear whether the course altered the children's communication or not. The supportive social milieu offered by the course was highly appreciated. Although generalisation beyond this course and setting is to be determined, the results suggest that parents of children with profound intellectual and multiple disabilities can appreciate a communication course and find it useful. An individual approach within the group setting and practical learning opportunities seem important.

The Development of an mHealth Tool for Children With Long-term Illness to Enable Person-Centered Communication: User-Centered Design Approach.

BACKGROUND: Children with long-term illnesses frequently experience symptoms that could negatively affect their daily lives. These symptoms are often underreported in health care. Despite a large number of mobile health (mHealth) tools, few are based on a theoretical framework or supported by scientific knowledge. Incorporating universal design when developing a product can promote accessibility and facilitate person-centered communication. OBJECTIVE: The aim of this study is to identify the symptom-reporting needs of children with cancer and congenital heart defects that could be satisfied by using a mobile app. Another aim is to evaluate how the child might interact with the app by considering universal design principles and to identify parents' views and health care professionals' expectations and requirements for an mHealth tool. METHODS: User-centered design is an iterative process that focuses on an understanding of the users. The adapted user-centered design process includes 2 phases with 4 stages. Phase 1 involved interviews with 7 children with long-term illnesses, 8 parents, and 19 health care professionals to determine their needs and wishes for support; a workshop with 19 researchers to deepen our understanding of the needs; and a workshop with developers to establish a preliminary tool to further investigate needs and behaviors. Phase 2 involved interviews with 10 children with long-term illnesses, 9 parents, and 21 health care professionals to evaluate the mock-up (prototype) of the mHealth tool. Data were synthesized using the interpretive description technique. RESULTS: A total of 4 aspects of needs emerged from the synthesis of the data, as follows: different perspectives on provided and perceived support; the need for an easy-to-use, non-clinic-based tool to self-report symptoms and to facilitate communication; the need for safety by being in control and reaching the child's voice; and a way of mapping the illness journey to facilitate recall and improve diagnostics. The children with long-term illnesses expressed a need to not only communicate about pain but also communicate about anxiety, fatigue, fear, and nausea. CONCLUSIONS: The findings of this study indicated that the PicPecc (Pictorial Support in Person-Centered Care for Children) app is a potential solution for providing communicative support to children with long-term illnesses dealing with multiple symptoms and conditions. The interview data also highlighted symptoms that are at risk of being overlooked if they are not included in the mobile app. Further studies are needed to include usability testing and evaluation in hospitals and home care settings.

'They get the opportunity to say what is important for them': exploring staff's early perceptions of the implementation of a new communicative approach to patients with aphasia.

PURPOSE: This study explored the perceptions of staff members regarding the implementation of a new communicative approach at a multidisciplinary neurorehabilitation centre in Denmark. Communication partner training according to Supported Conversation for Adults with Aphasia (SCATM) was combined with augmentative strategies from the KomHIT programme to increase the influence of patients with aphasia on their own rehabilitation process. METHODS: A qualitative approach was used involving two semi-structured group interviews with multidisciplinary staff in two wards. Three staff members from each ward participated. The recorded interviews were transcribed, and a thematic analysis of the data was conducted. RESULTS: Three main themes emerged from the analysis. Participants reported increased influence of patients with aphasia on their own rehabilitation process, as well as an increased focus on communication with patients with aphasia. Challenges included time restrictions and dilemmas in goal setting. CONCLUSIONS: Increasing staff knowledge of communication support and augmentative strategies seemed to improve the influence of patients with aphasia on their own rehabilitation process. Because the results were based on interviews with a small number of staff, they cannot be generalized and require further investigation that should also include interviews with the patients themselves and their families.IMPLICATIONS FOR REHABILITATIONThe combination of partner training with augmentative strategies may increase staff understanding of all individuals' rights to have their communicative needs met.The combination of partner training with augmentative strategies may support the influence of persons with aphasia on their own rehabilitation.Goal setting discrepancies between staff and patients with aphasia can be brought to light by more successful communication.The implementation of a new communicative approach can be challenged by a number of factors, e.g., time restrictions.The implementation process needs to be supported by actions on a higher organisational level.

Being heard - Supporting person-centred communication in paediatric care using augmentative and alternative communication as universal design: A position paper.

Person-centred care, with its central focus on the patient in partnership with healthcare practitioners, is considered to be the contemporary gold standard of care. This type of care implies effective communication from and by both the patient and the healthcare practitioner. This is often problematic in the case of the paediatric population, because of the many communicative challenges that may arise due to the child's developmental level, illness and distress, linguistic competency and disabilities. The principle of universal design put forth in conventions and legislation means that the design of products and services should be usable by all people, to the greatest extent possible. Augmentative and alternative communication encompasses strategies, for example pictures and apps, that are typically used with people with communication disability. In this position paper, we argue for the universal use of augmentative and alternative communication to support person-centred communication and care for children, regardless of age or potential disability. Clinical examples are shared from three different paediatric care settings where pictorial supports were applied universally. Interviews were conducted with children and adolescents (with and without disabilities), parents and healthcare practitioners, and the principles of universal design were used as a framework to demonstrate how person-centred communication is supported in paediatric care.

Evaluating pictorial support in person-centred care for children (PicPecc): a protocol for a crossover design study.

INTRODUCTION: This study protocol outlines the evaluation of the pictorial support in person-centred care for children (PicPecc). PicPecc is a digital tool used by children aged 5-17 years to self-report symptoms of acute lymphoblastic leukaemia, who undergo high-dose methotrexate treatments. The design of the digital platform follows the principles of universal design using pictorial support to provide accessibility for all children regardless of communication or language challenges and thus facilitating international comparison. METHODS AND ANALYSIS: Both effect and process evaluations will be conducted. A crossover design will be used to measure the effect/outcome, and a mixed-methods design will be used to measure the process/implementation. The primary outcome in the effect evaluation will be self-reported distress. Secondary outcomes will be stress levels monitored via neuropeptides, neurosteroids and peripheral steroids indicated in plasma blood samples; frequency of in-app estimation of high levels of distress by the children; children's use of analgesic medicine and person centeredness evaluated via the questionnaire Visual CARE Measure. For the process evaluation, qualitative interviews will be carried out with children with cancer, their legal guardians and case-related healthcare professionals. These interviews will address experiences with PicPecc in terms of feasibility and frequency of use from the child's perspective and value to the caseworker. Interview transcripts will be analysed using an interpretive description methodology. ETHICS AND DISSEMINATION: Ethical approval was obtained from the Swedish Ethical Review Authority (reference 2019-02392; 2020-02601; 2020-06226). Children, legal guardians, healthcare professionals, policymaking and research stakeholders will be involved in all stages of the research process according to Medical Research Council's guidelines. Research findings will be presented at international cancer and paediatric conferences and published in scientific journals. TRIAL REGISTRATION: ClinicalTrials.gov; NCT04433650.

Infant-Toddler Checklist identifies 18-month-old children with communication difficulties in the Swedish child healthcare setting.

AIM: At present, there is no reliable method to screen for communication difficulties at age 18-months in the Swedish child health care. This study examined the psychometric properties of the Communication and Symbolic Behavior Scales Developmental Profile Infant-Toddler Checklist (ITC) when used at the 18-month visit in the child healthcare setting. METHODS: Children aged 16-20 months (n = 679) were screened. Children were referred for an assessment if they screened positive screen or if the parent or nurse was concerned about the child's communicative development. Two groups of positive screens were used in the analysis (n = 78 children), one based on the ITC result, and one combining the ITC with contradicting information from the nurses' informal clinical assessment. RESULTS: The AUC ranged from 0.68 to 0.84. The sensitivity was 0.85, and the specificity was 0.59. When the ITC result was combined with the nurses' information, sensitivity increased to 0.88 and specificity to 0.63. The internal consistency was moderate to high, and fit indices were satisfactory. CONCLUSION: The results suggest that the ITC can be used to identify children in need of interventions to enhance communication at 18 months of age, especially in combination with the nurse's assessment.

"All of a sudden we noticed a difference at home too": parents' perception of a parent-focused early communication and AAC intervention for toddlers.

Augmentative and alternative communication (AAC) can enhance children's communication and is recommended to be introduced as soon as problems are identified. The aim of this interview study was to investigate how parents perceive the ComAlong Toddler intervention offered to parents of children with communication difficulties early in the diagnostic process. ComAlong Toddler consists of a 5-session, group-based, parental course, and two home visits that focus on responsive communication, enhanced milieu teaching, and multimodal AAC. Interviews were conducted 1 year after the intervention with 16 parents who had attended ComAlong Toddler. The data were analyzed through qualitative content analysis, resulting in four categories: (a) Development for us and the child, (b) acquiring useful tools, (c) useful learning strategies, and (d) benefits and challenges regarding intervention structure. Findings suggest that parents of toddlers with language or communication disorders learned and appreciated responsive communication and enhanced milieu teaching. All had used multimodal AAC and described its benefits. Parents emphasized the value of learning from other parents as well as from a speech-language pathologist who engaged with their child in the home environment. Parents suggest an enhanced family focus as a potential improvement.

The study design of ComAlong Toddler: a randomised controlled trial of an early communication intervention.

Aims: This study design article aims to describe a research study focused on evaluating the use of the Infant-Toddler Checklist to identify children at 18 months with early communication difficulties, and to study the ComAlong Toddler intervention for parents to support their child's communication development. Background: Communication disorders are a common public health problem affecting up to 20% of children. Evidence points to the importance of early detection and intervention to improve young children's communicative abilities and decrease developmental delay. Early identification of communication difficulties is possible with instruments such as Infant-Toddler Checklist. The ComAlong Toddler intervention is tailored to the needs of parents of young children with communication delay before definitive diagnosis. The parents are provided with guidance in communication enhancing strategies during home visit and five group sessions. Methods: The study uses a prospective cohort design. Children were consecutively recruited during 2015-2017, and data will be collected 2015-2023. The screening was performed at the child health centre through use of the Infant-Toddler Checklist. An assessment and first consultation were then performed by a speech and language therapist for children with suspected communication delay according to the screen as well as for children referred for other reasons before the age of 2.5 years. Children with confirmed communication delay were randomised between two interventions: the ComAlong Toddler parental course or a telephone follow-up. Outcome measures include child communication and language skills and use of augmentative and alternative communication. To gain insight into the participants' perspectives, surveys have been collected from parents. Conclusion: The study will provide information regarding identification and intervention for 18-month old children with communication delay. Trial registration: ISRCTN13330627.

Children's Perceptions of Pictures Intended to Measure Anxiety During Hospitalization.

Many children experience anxiety during a hospital stay, which can have an adverse impact on their recovery and response to future hospital care. To facilitate assessment of anxiety in young children and children with communicative disabilities, the short S-STAI (short version of the State scale of the State-Trait Anxiety Inventory), has previously been adapted to a visual format. The aims of the present study were (a) to validate the pictures used to represent emotions and the steps of a quantitative scale ('a lot' - 'some' - 'a little'), including to determine whether any of them should be replaced, and (b) to assess different pictures to be used for a qualitative scale ('good/like' - 'in between/so-so' -'bad/dislike') in the same instrument. A total of 103 children aged 5-8 years were asked to choose verbal labels for pictures of facial expressions intended to represent emotions, match those pictures with the emotional categories used in the short S-STAI (Tense/Nervous, Worried/Afraid, Calm/Relaxed, and Happy/Content) and indicate their preferences for pictures intended to represent the steps of a quantitative scale and a qualitative one. The children understood both scales and the differences between positive and negative emotions in the short S-STAI. The older children (aged 7 and 8) significantly more often chose a picture for each step of the scales that was intended to represent that particular step. The article discusses implications for the choice of pictures representing emotional states in the short S-STAI and presents recommended pictures.

Implementation of pictorial support for communication with people who have been forced to flee: Experiences from neonatal care.

A first attempt was made to introduce picture-based communication at a Swedish neonatal ward to facilitate communication with immigrant patients having fled their country of origin. Six members of staff were interviewed about their experiences using semi-structured dyadic interviews. Their answers were analysed using inductive content analysis, and the results were related to a theoretical framework called Promoting Action on Research Implementation in Health Services. The staff found the pictures to be helpful in communication with refugees. They were motivated to use the pictorial support and experienced a great need for it. Two key prerequisites for successful implementation were identified: receiving training and having a person formally in charge of the implementation process.

Gaze-controlled communication technology for children with severe multiple disabilities: Parents and professionals' perception of gains, obstacles, and prerequisites.

The aim of this study was to explore parents' and professionals' thoughts of how a gaze-controlled computer can be beneficial to children with severe multiple disabilities. All systems were provided primarily for symbol-based communication, but were also used for other purposes such as play, leisure and school activities. A further aim was to investigate factors affecting usability, specifically for communication. The study used a qualitative approach, involving content analysis of semistructured interviews with the children's key persons (N = 11). The analysis yielded three categories and twelve subcategories. There were gains for the children in terms of empowerment, social interaction, learning opportunities and efficient computer use. Inaccessibility, liability issues and technical failure were seen as obstacles, while the prerequisites included time, collaboration, stimulating content, know-how and opportunities. To sum up, this study suggests that gaze-controlled technology can provide children who have multiple disabilities involving severe motor dysfunction and communicative and cognitive problems with new opportunities to communicate, interact and perform activities independently, as long as conditions are right.

Communication in children and adolescents after acquired brain injury: An exploratory study.

OBJECTIVE: The usability of the Communicative Effectiveness Index (CETI) in adolescents with acquired brain injury was investigated and compared with linguistic, cognitive and brain injury data. DESIGN: A prospective, longitudinal, between-group design. SUBJECTS: Thirty participants were divided into 2 subgroups: CETI+ and CETI- groups. METHODS: Parental CETI ratings of daily communication were compared with linguistic data and IQ test results. Lesion site and aetiology were also studied. RESULTS: The CETI+ group (n = 16) had a mean score greater than 75 out of 100, while the mean score of the CETI- group (n = 14) was below 75. Complex daily communication was impaired in both groups, but the CETI- group scored significantly lower on verbal IQ and grammar comprehension tests and had more naming difficulties. A majority of subjects in the CETI- group had a left hemisphere injury. Traumatic vs non-traumatic acquired brain injury did not differentiate the results.  Conclusion: Specific complex CETI items provided unique information that is not easily measured by linguistics and cognitive tests for use with the acquired brain injury group. Parental evaluations of communication skills were well reflected in language and verbal IQ test results. Left hemisphere injury was associated with poorer communication outcome.

Evaluating the Impact of AAC Interventions in Reducing Hospitalization-related Stress: Challenges and Possibilities.

Hospitalization is a stressful context for all children and their families, but especially for children with communication difficulties. Effective communication using augmentative and alternative communication (AAC) strategies can play a critical role in preparing and supporting everyone involved in such situations to have discussions that minimize insecurity, allow children to express their concerns, and so decrease negative stress and anxiety. However, there is a critical need to identify robust and reliable ways of evaluating the effectiveness of interventions that seek to achieve this aim. This research note illustrates some of the challenges and problems that require attention and suggests possible new research tools, for example, the use of physiological measures. The evaluation of an AAC intervention on a day surgery ward is described and used to illustrate one potential physiological measure for evaluating the impact of an intervention.

Strategies that assist children with communicative disability during hospital stay: Parents' perceptions and ideas.

There is a lack of research on the use of augmentative and alternative communication (AAC) in paediatric care, despite the fact that most children in need of AAC frequently need to visit hospitals and sometimes have to stay for long periods. The aim of this study was to investigate parents' experiences of the hospital visits with their children with communicative disabilities and to collect their ideas about how to optimize communication in this situation. Ten parents who had children with communicative disability took part in three focus group interviews. The analysis had a retrospective qualitative content theory. In the qualitative content analysis of the focus group interviews, 4 categories and 17 subcategories were identified. Overall, the results highlighted the importance of enabling direct communication between the child and the staff during the hospital stay. Parents of children with communication difficulties highlighted the importance of listening to their children and understanding their needs during hospital care and that hospital staff are in need of more knowledge in communicative disability and AAC to accomplish this. Training programmes for health-care professionals should be established to facilitate these requirements and connect to the United Nations conventions. Hospitals should provide and use AAC/communicative support.

Using Picture and Text Schedules to Inform Children: Effects on Distress and Pain during Needle-Related Procedures in Nitrous Oxide Sedation.

During hospital visits, children often undergo examinations and treatments that may involve an experience of pain and distress that is also connected to the staff's treatment. The United Nation's Convention on the Rights of Persons with Disability advocates the use of Universal Design. One way of implementing this idea within paediatric nursing is to increase the use of pictorial supports, and the few studies that have been published show promising results. The aim of this study was to do a comparison between two groups of children in regard to the pre- and postconditions of implementing an intervention including staff instruction and the use of pictorial support. The support consisted of a visual schedule with pictures and text, used both preparatory to and during the hospital visit. One hundred children aged 5-15 (50 children during the preinterventional data collection and 50 children postinterventionally) reported pain intensity and distress during needle-related procedures in nitrous oxide sedation. The results showed that the intervention had a positive effect in significantly lowering the level of preprocedural distress. The results showed that the pain intensity was also lowered however not reaching statistical significance. This confirms other positive research results on the use of visual supports within paediatric care, a topic that has to be further studied.