Supporting children with complex communication needs

Many children face significant challenges communicating, expressing themselves, and sharing their creative thoughts and ideas with others. Interactive technologies are playing an increasing role in addressing these challenges. This workshop will be an opportunity to discuss design, implementation, and evaluation methods, the needs of specific communities, as well as experiences in previous and current projects

Supporting children with severe to profound learning difficulties and complex communication needs to make their views known: observation tools and methods

All children have the right to shape decisions that influence their lives. Yet, children with severe-to-profound intellectual disabilities and complex communication needs are often marginalized from this process. Here, we examined the utility of a set of tools incorporating ethnographic and structured observational methods with three such children. We specifically examined the communicative behavior that these children used to share their views and the ways in which adults recognized and responded to them. The three case studies illustrate (1) that these children have ways to make their intentions known, even though they may use idiosyncratic ways of doing so; (2) that adults play important roles in supporting their communicative bids; and (3) that this set of tools was sufficiently sensitive to subtle and fine-grained nonverbal cues that might otherwise be overlooked

'Maybe I will give some help ... maybe not to help the eyes but different help': an analysis of care and support of children with visual impairment in community settings in Malawi

Background: Visual impairment in children is common in low and middle‐income settings. Whilst visual impairment (VI) can impact on the development of children, many reach full potential with appropriate early intervention programmes. Although there is increased emphasis on early child development globally, it is not yet clear how to provide specific programmes for children with VI in low and middle‐income settings. This study aims to identify facilitators and barriers to the provision of a developmental stimulation programme for children with VI in rural and urban Malawi. Methods: We undertook 6 focus groups, 10 home observations and 20 in‐depth interviews with carers of children with VI under 6 years in urban and rural Southern Malawi. We utilised topic guides relating to care, play, communication and feeding. Qualitative data were subject to thematic analysis that included placing themes within Bronfenbrenner's ecological framework. We established authenticity of themes through feedback from participants. Results: We identified themes within Bronfenbrenner's framework at five levels: (1) blindness acting as a barrier to stimulation and communication, health and complex needs all affecting the individual child; (2) understanding of VI, ability to be responsive at the microsystem level of the carer; (3) support from other carers at microsystem level within a mesosystem; (4) support from other professionals (knowledge of, identification and management of children with VI, responsibilities and gender roles, environmental safety and prejudice, stigma and child protection all at the level of the exosystem. Discussion: This study has revealed the requirements needed in order to produce meaningful and appropriate programmes to support nutrition, care and early stimulation for children with VI in this and similar African settings. This includes supporting carers to understand their child's developmental needs, how to better communicate with, feed and stimulate their child; offering advice sensitive to carers' responsibilities and professional training to better support carers and challenge community stigma

Effects of a Mixed-Mode Instructional Program on the Communicative Turns of Preschoolers with Down syndrome who use Augmentative and Alternative Communication

Children with Down syndrome are at increased risk for a variety of deficits, including those in the area of speech, language, and literacy. Speech-language pathologists (SLPs) have historically focused on building children\u27s verbal and signed vocabulary, but these efforts do not always result in significant changes in children\u27s functional communication. Augmentative and alternative communication (AAC) systems and interventions have been recommended by the American Speech-Language-Hearing Association as appropriate options for facilitating functional communication skills with children with Down syndrome ([American Speech-Language-Hearing Association [ASHA], 2010; New York State Department of Health [NYSDOH], 2006). In spite of these recommendations, there exists a critical shortage of SLPs who are clinically competent in providing necessary AAC services to children with Down syndrome (Edgar & Rosa-Lugo, 2007; Light, McNaughton, Drager, Roberts, & Wilson, 2004). As a result, families of children with varying disabilities, including Down syndrome report high levels of stress related to accessing important professional expertise and intervention for their children (Dabrowska & Pisula, 2010). Researchers and clinicians alike must consider alternative treatment delivery options that are responsive to the needs of families and children with complex communication needs (Cirrin et al., 2010; Light & McNaughton, 2015). A telepractice service delivery model has been documented to ease burdens felt by families when attempting to access rehabilitative services (Gladden, 2013). Telepractice involves the use of technology to connect clinicians and clients at a distance for the purposes of assessment, intervention, or consultation (Theodoros, 2011). An expanding body of research promotes the use of telepractice service delivery within AAC to address the needs of both children and families. One evidence-based AAC intervention of interest is communication partner instruction. Communication partner instruction, even in small doses, has been proven to be an effective method for providing parents and children with complex communication needs, specifically children with Down syndrome, access to necessary intervention (Kent-Walsh, Murza, Malani, & Binger, 2015). Partner instruction involves educating those critical stakeholders who surround the child most frequently (e.g., parents, educators, educational assistants) to recognize and respond to children\u27s communicative signals and to create opportunities for children to participate in the conversation (Pennington, Goldbart, & Marshall, 2004). Despite the evidence supporting the use of communication partner instruction, SLPs continue to struggle with implementation in billable contexts (Ogletree, 2013). SLPs in the United States often operate in a billable context, where the client must be actively involved in the therapy session in order for practitioners to receive reimbursement from insurance companies for time spent with clients. This issue has served as a barrier to use of communication partner instruction, as currently accepted research-validated models use introductory parent sessions independent of the children\u27s learning to teach partner skills. Therefore, the current investigation examined the effects of a communication partner instruction using a mixed-mode service delivery model, which incorporated face-to-face and telepractice sessions, as well as a billable context. The focus of the protocol was on educating parents in one aided language strategy using a communication partner instruction program incorporating continuous child involvement and a mixed-mode service-delivery model, including both face-to-face and telepractice intervention components (e.g., Skype/FaceTime), to address the need for interventions which consider stressors faced by families when attempting to access evidence-based AAC intervention. The study utilized a single-case, multiple-probe experimental design across three parent-child dyads. Baseline, intervention, generalization, and maintenance phases were used to investigate the efficacy of the nine-session intervention. Visual analysis and Improvement Rate Difference (IRD) analyses indicated that the intervention was highly effective in increasing parents\u27 use of the target strategy and children\u27s communicative turntaking during shared storybook reading. One-hundred percent of parent participants increased their performance from baseline to post-intervention (IRD = 1.0), and all parents maintained these levels of achievement during the maintenance phase (IRD = 1.0). Similarly, children increased their frequency of communicative turns from baseline to post-intervention (IRD = 1.0), and all children participants maintained these levels of turntaking during the maintenance phase (IRD = 1.0), as well as during a novel book series (IRD = 1.0). These findings suggest that the mixed-mode service delivery model, which includes both face-to-face and telepractice sessions, as well as continuous child involvement is an effective method for increasing parents\u27 use of a target strategy and children\u27s frequency of multimodal communicative turns. Clinical and professional implications, as well as future directions for research are discussed

The use of aided language modeling to support social interactions of children who use augmentative and alternative communication: training and coaching siblings

Researchers have indicated that the use of natural communication partners (e.g., parents, caregivers, teachers, and peers) can be effective in supporting individuals who have complex communication needs (CCN) and use augmentative and alternative communication (AAC). However, limited research has been conducted to determine the effectiveness of having typically developing siblings as communication partners to support the social communication skills of children who have CCN and use AAC. In this single-case multiple-probe design study a training and coaching intervention was implemented to teach typically developing siblings to use the aided language modeling (ALM) strategy with high fidelity. Changes in children’s independent communication and the overall acceptability of the intervention by family members were also explored. Results revealed that typically developing siblings can use the ALM strategy with high fidelity. The independent communication of children who use AAC had high variability and overall, family members were pleased with the intervention’s goals, procedures, and outcomes

Parental perspective on the use of high technology means of communication in children with complex communication needs

Skupini djece sa složenim komunikacijskim potrebama pripadaju djeca s motoričkim, jezičnim, kognitivnim i/ili senzoričkim teškoćama, a navedene teškoće mogu biti posljedica stanja poput poremećaja iz spektra autizma, cerebralne paralize, dječje govore apraksije ili intelektualnih teškoća. Djeca sa složenim komunikacijskim potrebama ne mogu komunicirati na uobičajen način te mogu imati slabo razumljiv govor ili govor koji je u određenoj mjeri razvijen, ali se ne koristi kao primarno sredstvo komunikacije. Jedno od rješenja prevladavanja teškoća jest uvođenje različitih sredstava potpomognute komunikacije, a u procesu njhove implementacije važnu ulogu ima djetetova obitelj. U okviru ovog rada intervjuirani su roditelji djece sa složenim komunikacijskim potrebama s ciljem pružanja uvida u njihova iskustva, osjećaje, njihov doživljaj takvog načina komunikacije te njihovo viđenje vlastite uloge u cijelom procesu. Podaci su prikupljeni pomoću polustrukturiranih intervjua sa sedam roditelja djece sa složenim komunikacijskim potrebama koja koriste visokotehnološka sredstva potpomognute komunikacije. Tematskom analizom dobivene su tri globalne teme (Komunikator kao sredstvo potpomognute komunikacije, Roditelj kao primarni komunikacijski partner, Podrška djetetu i obitelji) koje su analizirane i prikazane uz pomoć tematskih mreža. Problemi s kojima se roditelji uglavnom susreću jesu skupoća opreme i nedostatna stručna podrška. Sama uporaba komunikacijskog uređaja je ograničena, ali usprkos tome roditelji ističu njegov pozitivan utjecaj na dijete.The group of children with complex communication needs includes children with motor, language, cognitive and/or sensory impairments, which can occur as a result of conditions such as autism spectrum disorders, cerebral palsy, childhood apraxia of speech or intellectual disabilities. Children with complex communication needs cannot communicate in a conventional way and their speech may be poorly intelligible or developed to a certain degree but still not used as a primary means of communication. One of the solutions to overcoming the difficulties in question is the use of different means of augmentative and alternative communication, whose process of implementation greatly depends on the child’s family. This paper centres on parents of children with complex communication needs in order to gain insight into their experiences, emotions and thoughts on this type of communication, as well as their own role in the process. The data is collected through semi-structured interviews with seven parents of children with complex communication needs who use high technology means of augmentative and alternative communication. According to thematic analysis, three main themes emerge (Communicator as a means of augmentative and alternative communication, Parent as a primary communication partner, Supporting the child and its family), which are discussed and presented with the help of thematic networks. The most common problems are expensive equipment and scarce professional support. The very use of the communication device is limited, but nevertheless parents highlight its positive impact on the child

A service evaluation of parent adherence with dysphagia management therapy guidelines: Reports from family carers supporting children with complex needs in Greece

Purpose: Many children with complex needs exhibit eating, drinking and/or swallowing disorders (dysphagia). These children often have associated learning needs, and require assistance from carers for daily tasks such as eating and drinking. The aim of this study was to identify which strategies to manage dysphagia were challenging for family carers, and reasons for any non-adherence. Method: In this service evaluation researchers observed carers during mealtimes, and investigated carer opinions of strategies used to minimise the risks of dysphagia. Eight children with complex needs aged 3.4 - 7.5 years and their primary family caregiver participated. Results: Adherence with speech and language pathologists’ dysphagia recommendations overall was over 50% in all but one case. For specific strategies, the highest adherence was observed for diet modifications of foods (89%), communication during the mealtime (83%), amount of food to present (81%) and the pacing of fluids and foods (81%). Lower levels of adherence were identified in relation to postural management (58%), environmental changes (58%), utensils (56%) and preparatory strategies (49%). Conclusion: Adherence with use of strategies to support mealtimes was over 50% in all but one case. Findings suggest that support is essential in order to promote safe mealtimes, reduce family carers’ stress and increase knowledge, confidence and adherence in implementing dysphagia guidelines in the family home