Supporting early communication skills of children with developmental disorders in South Africa : caregiver and clinician perspectives about mobile health applications

Using a mobile health application (i.e., app) to empower primary caregivers of young children with developmental disorders in low- and middle-income countries is opening up new avenues for early childhood intervention. Thirteen caregivers and 10 speech-language pathologists participated in 3 focus groups to explore their perspectives about the potential benefits and suitability of a mobile health app as part of intervention, its features, the likelihood of using and recommending it, as well as potential pitfalls to be avoided. Both participant groups were generally positive, although there was little overlap between their responses. Caregivers generally focused on increased knowledge and skills (of all family members), as well as on empowerment and reduced costs. Speech-language pathologists, on the other hand, focused on how current service delivery would be enriched by increasing the dosage of therapy and enhancing parental cooperation. They also expected that the reach of service delivery would be expanded as more children and caregivers could potentially benefit. Although technology (i.e., mobile apps) could open up new possibilities for service delivery in this population, the perspectives of all stakeholder groups should be considered to ensure successful adoption of such technologies.The United States National Institute of Deafness and Other Communication Disorders (NIDCD) through the National Institutes of Health (NIH) Fogarty International Center (FIC) mhealth initiative to Georgia State University.http://www.iycjournal.com2021-10-01hj2020Centre for Augmentative and Alternative Communication (CAAC

Caregiver perceptions of children who have complex communication needs following a home-based intervention using augmentative and alternative communication in rural Kenya: an intervention note:Home-based intervention using AAC in rural Kenya

A high level of unmet communication need exists amongst children with developmental disabilities in sub-Saharan Africa. This study investigated preliminary evidence of the impact associated with a home-based, caregiver-implemented intervention employing AAC methods, with nine children in rural Kenya who have complex communication needs. The intervention used mainly locally-sourced low-tech materials, and was designed to make use of the child's strengths and the caregiver's natural expertise. A pretest-posttest design was used in the study. Data were gathered using an adapted version of the Communication Profile, which was based on the International Classification of Functioning, Disability, and Health (ICF) framework. The non-parametric Wilcoxon signed-rank test was applied to data from the first two sections of the Communication Profile-Adapted. Qualitative analysis was conducted on the final section. The data provided evidence of statistically significant positive changes in caregiver perceptions of communication at the levels of Body Structure and Function, and Activities for Communication. Also, analysis of the Participation for Communication section revealed some expansion to the children's social activities. The potential impact of the home-based intervention would benefit from investigation on a larger scale. Limitations of the study are discussed

Diagnosis and management of Cornelia de Lange syndrome:first international consensus statement

Cornelia de Lange syndrome (CdLS) is an archetypical genetic syndrome that is characterized by intellectual disability, well-defined facial features, upper limb anomalies and atypical growth, among numerous other signs and symptoms. It is caused by variants in any one of seven genes, all of which have a structural or regulatory function in the cohesin complex. Although recent advances in next-generation sequencing have improved molecular diagnostics, marked heterogeneity exists in clinical and molecular diagnostic approaches and care practices worldwide. Here, we outline a series of recommendations that document the consensus of a group of international experts on clinical diagnostic criteria, both for classic CdLS and non-classic CdLS phenotypes, molecular investigations, long-term management and care planning