Towards a More Family Oriented and Interdisciplinary Screening of Language Development in Young Children: Perceptions, Opinions and Desires of Caregivers of Children with and without Atypical Language Development Abstract Only a small number of children with atypical language development who can benefit from early intervention are actually identified before reaching school age. Our aim was to explore perceptions of caregivers of monolingual and multilingual children with and without atypical language development in order to provide relevant themes for improving language screening and referral in Well Child Care (WCC). We interviewed 38 Dutch caregivers of monolingual and multilingual children with and without atypical language development. They were recruited via kindergarten, nurseries, and speech and language pathologists. First, we analyzed the interviews of caregivers of monolingual children with atypical language development and caregivers of multilingual children. Second, we adopted data source triangulation with the interviews of caregivers of monolingual children without atypical language development for further exploration of the results of the first round. Third, we categorized emerging codes across identified subthemes and themes. We identified six subthemes: (1) Perception WCC; (2) Perception consult at the WCC; (3) Opinion of the consult at the WCC; (4) Desires regarding WCC; (5) Parent factors, and (6) Child factors (first and second round). Target themes, relating to the themes and subthemes, that can be used to enhance structural language screening in WCC are: a more family oriented consult, better interprofessional collaboration, and more specific knowledge about language development and different referral routes for children with atypical language development.

Youth and Parent Illness Appraisals and Adjustment in Pediatric Inflammatory Bowel Disease Abstract Youth with inflammatory bowel disease (IBD) and their parents are at increased risk for psychological adjustment difficulties, potentially due to the uncertain and intrusive nature of IBD. However, empirical investigations have yet to assess the contribution of these unique disease features to adjustment outcomes. Our aim was to examine: 1) the influence of youth and parent perceptions of illness uncertainty and illness intrusiveness on youth adjustment; and 2) examine the influence of youth and parent perceived uncertainty and intrusiveness on parent adjustment. Youth with IBD (N = 107) and their primary caregiver completed measures of illness uncertainty, illness intrusiveness, and psychological adjustment. Results revealed that youth illness uncertainty was more closely associated with youth depressive symptoms than was youth perceived intrusiveness. Further, youth illness perceptions were more closely associated with youth depressive symptoms compared to parent perceptions; however, results also suggested that parent illness perceptions may indirectly impact youth adjustment through their influence on youth illness perceptions. Finally, parent illness intrusiveness demonstrated a more robust association with parent adjustment compared to parent illness uncertainty, and both youth and parent illness intrusiveness were independently related to parent adjustment. Findings highlighted the transactional nature of adjustment in pediatric IBD and the importance of examining clinically relevant youth and parent subjective illness perceptions, like uncertainty and intrusiveness, in investigations of youth and parent adjustment outcomes in this population.

Effect of Video Embedded with Hotspots with Dynamic Text on Single-Word Recognition by Children with Multiple Disabilities Abstract The purpose of the study was to evaluate the effects of an intervention on single-word recognition. The intervention used an AAC app programmed with video visual scene displays (VSDs) embedded with hotspots with the Transition to Literacy (T2L) feature. Three school-aged children with multiple disabilities who had limited speech and limited literacy skills participated in a multiple baseline across participants design. Four names of characters in favorite movies and shows served as target words for each participant. All three children demonstrated an increase in accurate identification of target words from baseline to intervention. Tau-U effect sizes for the three participants were 0.69, 0.76, and 0.84, all of which were statistically significant (p < 0.05). Professionals can consider including the intervention evaluated in the current study as one component of literacy intervention for school-aged children with multiple disabilities. Future research should further evaluate video VSDs and the T2L feature for use with individuals with multiple disabilities.

“Tourette’s Is a Lonely Place”: an Interpretative Phenomenological Analysis of the Personal Experience and Identity of Adults with Tourette’s Syndrome Abstract Research suggests that adults with Tourette’s syndrome (TS) may face unique challenges in their everyday life due to their condition. To date, however, only a limited number of studies exist in relation to their life experiences and conception of identity. This study, which we believe to be the first of its kind, aimed to expand the literature by ‘giving voice’ to this population, and to evaluate the social and personal cost of living with TS during adulthood. Semi-structured interviews were conducted with sixteen adults with Tourette’s that focused on how they negotiated their identity and experiences. Transcripts of recorded interviews were subjected to interpretative phenomenological analysis. Three superordinate themes emerged: a) “Incorporating Tourette’s syndrome into self” revealed two divergent ways in which TS was merged into the participants’ self-identity, either by reconciling with it or fighting against it; b) “Interpersonal interaction” covered issues relating to negative and supportive ties as a result of their condition; and finally, c) “The solitude of Tourette’s syndrome” described the loneliness that stems from the condition. The current findings suggest that the experience of the participants is a multidimensional one related to self-identity threat, social withdraw, and self-stigma. Implications for clinical practice on the topic are discussed.

Systematic Evaluation of Variables Associated with Emesis: A Case Study Abstract Recurrent emesis (i.e., vomiting) during mealtime is often a great concern of caregivers of children with pediatric feeding disorders. Identifying the cause and treating the emesis may be difficult due to the multiple factors that may contribute to the occurrence overtime. Emesis may result from various factors, some of which include volume sensitivity, inadequate oral motor skills, and environmental factors related to food novelty and texture. This case study describes a 6-year-old boy with spina bifida who was dependent upon gastrointestinal-tube feedings due to frequent emesis when fed orally. Upon admission to an intensive feeding program, several potential factors maintaining the emesis were identified based upon clinical assessment, observation, and caregiver report. These factors were each evaluated systematically and results indicated that emesis was more likely to occur when foods of novel taste and texture were presented. With exposure, rates of emesis decreased across both type and texture of food. However, emesis decreased more quickly for novel foods at a pureed texture compared to the same food at a higher texture. There were no significant differences in rates of emesis during environmental manipulations related to observer response or associated with volume sensitivity. The methods utilized in this study may be useful to practitioners to systematically evaluate the variables contributing to the occurrence and maintenance of emesis.

Self-Reported Anxiety, Depression and Coping in Parents of Children with Phenylketonuria Abstract Limited published research has evaluated mental health in parents of children with phenylketonuria (PKU) and their coping strategies. We aimed to assess anxiety, depression and coping in parents of Tunisian children treated for PKU. We conducted a cross-sectional study in the reference center for the management of inherited metabolic diseases in Tunisia. We used the Hospital Anxiety and Depression (HAD) scale and the Brief-COPE. Dependent variables were anxiety, depression, HAD Depression (HADD) and Anxiety (HADA) scores, and coping scores. Linear regression and logistic binary regression were used for multivariate analysis. Sixty-five parents from 42 families participated. 62% and 57% of them had anxiety and depression, respectively. Parental female gender (p = 0.049), rural origin (p = 0.005) and agitation in children with PKU (p = 0.031) were associated with anxiety. Parental age under 35 years (p = 0.043), agitation in children with PKU (p = 0.012) and behavioral disengagement (p = 0.003) were associated with higher HADA scores. Parents used problem focused (5.64 ± 1.34) more often than emotion focused coping (4.55 ± 0.90). Female gender was associated with emotion-focused coping (p = 0.042) and religion (p = 0.018). Motor disability in children with PKU was associated with humor (p = 0.047) and negatively associated with religion (p = 0.037). Psychological follow-up was associated with venting (p = 0.039). A low education level was negatively associated with self-blame (p = 0.024). Our study provided preliminary data which could be used to develop a targeted psychological support strategy for parents at risk for anxiety and depression not only in Tunisia but also in comparable populations where newborn screening for PKU is not available.

Establishing Peer Manding in Young Children with Autism Using a Speech-Generating Device Abstract Impairment in social communication is a hallmark characteristic for individuals with a diagnosis of autism. As such, specific instructional strategies that incorporate the use of augmentative and alternative communication (AAC) system, such as an iPad® based speech-generating device (SGD) is often indicated. This study evaluated the use of the interrupted chain procedure in the establishment of peer manding for three young children with a diagnosis of autism. The procedures involved the presentation of a task related activity (i.e., puzzle) and the neuro-typical peer interrupted the behavioral chain of task completing by withholding the final piece needed to complete the task. An iPad® based SGD was used as an AAC for the participants to mand for the missing item needed to complete the task related activity from the peer. Additionally, a five-second-time delay with full physical prompts was used for instructional purposes. The results indicated that all three participants acquired the ability to mand for the missing item from the peer, and this skill was also found to maintain following training.

Psychological Benefits of Inclusive Soccer Program in Young Adults with and without Intellectual Disabilities Abstract This study was aimed at investigating the effects of the inclusive soccer program on psychological benefits in young adults with and without intellectual disabilities (ID). In the current study, sport motivation, measured as the relative autonomy index, visuo-spatial working memory and selective attention aspects of executive function, measured as the computerized Corsi Block Tapping Test and Eriksen Flanker Test were assessed. Ten participants with ID and ten typical partners practiced soccer activities together for 50-min each session, twice a week for fifteen-week long. The whole practice sessions were monitored at moderate exercise intensity. Measures were tested at pre- and post- program. Our results indicated that the typical partners improved the performance in Corsi Block Tapping Test because partners needed to search and select participants with ID and targets simultaneously in a spatial field. The increased relative autonomy index was noted in participants with ID. They also improved response accuracy in Eriksen Flanker Test because they were requested to evaluate, analyze, and take the appropriate actions at all times during practice. Thus, the demanding of inclusive soccer activities might promote sport motivation in participants with ID and lead to different cognitive benefits in participants with ID and their partners respectively. Future research is needed to examine with a larger sample size. In addition, more cognitive and physiological measures should be applied to explore the underlying mechanisms among individuals with ID.

Maternal Acceptance–Rejection and Mother–Child Interaction in Turkish Mothers of Children with Developmental Disabilities Abstract The study evaluates the relationship between mothers’ perceptions of being accepted or rejected by their mothers as children and the quality of mother–child interaction in mothers with developmental disabilities. The mothers’ and children’s ages ranged from 25 to 56 (x = 35.05) and 12 to 72 months (x = 52), respectively. A total of 103 children were involved in the study (80 boys and 23 girls); 57 children were diagnosed with autism spectrum disorder and 46 with other developmental disabilities. Parental Acceptance–Rejection Scale / Mother Assessment / Short Form – Turkish Version was administered to the mothers to measure their perceptions of their own maternal acceptance–rejection. The Turkish version of the Maternal Behavior Rating Scale was used to score mothers’ interaction levels with their children with developmental disabilities. The results indicate that mothers generally perceived maternal rejection. The perception of maternal acceptance–rejection differed greatly based on the mother’s number of siblings. The quality of mother–child interaction was significantly affected by the children’s diagnoses. Although a weak and positive correlation was found between mothers’ perception of maternal rejection and the quality of their interaction with their child, this finding was discussed within the context of culture, since effective parenting in Turkish culture tends to be practiced through high level of control and employing discipline.

The Association between Quality of Life and Lifestyle of Wheelchair Handball Athletes Abstract Adapted sports for people with physical disabilities have considerably increased over the last few years, highlighting benefits in health and quality of life of this population. However, no investigations have been conducted with this population in order to evaluate the relationship between quality of life and life style so far, particularly with respect wheelchair handball. This study aimed to examine the association between quality of life and lifestyle of wheelchair handball athletes. The cross-sectional study comprised a sample of 105 male athletes with physical disabilities. Participants provided answers to the questions of the sociodemographic questionnaire, WHOQOL-Bref scale and the Fantastic lifestyle assessment. To analyze the resulting data, a one-way ANOVA and Tukey’s post hoc test were employed. The quality of life domains with higher and lower scores were, respectively, the “Psychological” and “Environmental.” The lifestyle categories with higher and lower scores were related, respectively, to “Psychobiological Aspects” and “Work.” The results evidenced an association between high quality of life and lifestyle scores, suggesting that the practice of adapted sports, and specifically wheelchair handball, can exert an important influence on the quality of life and lifestyle of people with physical disabilities.