Enhancing communication performance skills may help children with Down Syndrome (DS) to expand their opportunities for participation in daily life. It is a clinical challenge for speech-language pathologists (SLP) to disentangle various mechanisms that contribute to the language and communication problems that children with DS encounter. Without clarity of different levels of functioning, appropriate interventions may be poorly conceived or improperly implemented. In the present study, the International Classification of Functioning, Disability and Health – Children and Youth Version (ICF-CY) framework was used to classify contributing factors to communication performance in a multiple case study of six young children with DS. Within a comprehensive assessment, we identified individual and environmental facilitators and barriers, leading to an integrative profile of communication performance (IPCP) for each child. Whereas these six children shared a developmental, and/or expressive vocabulary age and/or level of communicative intent, the children faced similar but also unique personal and environmental factors that play an important role in their communication performance. Our data reveal that a combination of different factors may lead to the same language outcomes and vice versa, based on a unique pattern of interdependency of ICF-CY domains. Planning SLP interventions for enhancing communication performance in children with DS should therefore be based on a comprehensive view on the competences and limitations of every individual child and its significant communication partners. This evaluation should address facilitators and barriers in body functions, structures, activities, participation and environment, with a specific focus on individual strengths. The ICF-CY provides a useful framework for constructing an IPCP that serves this purpose.
Background: Adverse Childhood Experiences (ACEs) are an overlooked risk factor for behavioural, mental and physical health disparities in children with intellectual disabilities (ID) and borderline intellectual functioning (BIF). Aims: To gain insight into the presence of the 10 original Wave II ACEs and family context risk variables in a convenience sample of children with ID and BIF in Dutch residential care. Methods and procedures: 134 case-files of children with ID (n = 82) and BIF (n = 52) were analysed quantitatively. Outcomes and results: 81.7 % of the children with ID experienced at least 1 ACE, as did 92.3 % of the children with BIF. The average number of ACEs in children with ID was 2.02 (range 0???? 8) and in children with BIF 2.88 (range 0???? 7). About 20 % of the children with moderate and mild ID experienced 4 ACEs or more. Many of their families faced multiple and complex problems (ID: 69.5 %; BIF 86.5 %). Multiple regression analysis indicated an association between family context risk variables and the number of ACEs in children. Conclusions and implications: The prevalence of ACEs in children with ID and BIF appears to be considerably high. ACEs awareness in clinical practice is vital to help mitigate negative outcomes.
Background: Concepts such as participation and environment may differ across cultures. Consequently, to use a measure like the Participation and Environment Measure for Children and Youth (PEM-CY) in other than the original English-speaking contexts, cultural adaptation needs to be assured. The aim of this study was to cross-culturally translate and adapt the PEM-CY into German as it is used in Germany, Austria and Switzerland. Methods: Fifteen parents of children and adolescents with disabilities from three German speaking countries participated in three rounds of think-aloud interviews. We followed the procedure of cultural equivalence guidelines including two additional steps. Data was analyzed by content analysis using semantic, idiomatic, experiential and conceptual equivalence. Results: Results show adaptations mainly focused on experiential and conceptual equivalence, with conceptual equivalence being the most challenging to reach. Examples of experiential equivalence included adapting the examples of activities in the PEM-CY to reflect those typical in German speaking countries. Conceptual equivalence mainly addressed aspects of “involvement” and “environment” of children and adolescents and was reached through adaptations such as enhanced instructions and structures, and additional definitions. Conclusions: This study presents a cross-cultural translation and adaptation process to develop a German version of the PEM-CY that is suitable for Germany, Austria and Switzerland. Using a modified cultural adaptation process, a culturally adapted version of PEM-CY (German) is now available for research, practice and further validation.
