Globally, 52.9 million children under the age of 5 experience a developmental disability, such as sensory impairment, intellectual disability, and autism spectrum disorders. Of these 95% live in low-and-middle-income countries. Most of these children lack access to care. In light of the growing evidence that caregivers can learn skills to support their children’s social communication and adaptive behavior and to reduce their challenging behavior, the World Health Organization developed a novel Caregiver Skills Training Program (CST) for families of children with developmental disorders or delay to address such treatment gap. This report outlines the development process, content, and global field-testing strategy of the WHO CST program. The CST program is designed to be feasible, scalable, and adaptable and appropriate for implementation in low-resource settings by nonspecialists. The program was informed by an evidence review utilizing a common elements approach and was developed through extensive stakeholder consultation and an iterative revision process. The program is intended for a global audience and was designed to be adapted to the cultural, socioeconomic, geographic, and resource context in which it is used to ensure that it is comprehensible, acceptable, feasible, and relevant to target users. It is currently undergoing field-testing in more than 30 countries across all world regions.
The World Health Organization’s Caregiver Skills Training programme for children with developmental disorders or delays teaches caregivers strategies to help them support their child’s development. Ethiopia has a severe lack of services for children with developmental disorders or delays. This study explored the perspectives of Ethiopian caregivers, professionals and other stakeholders to inform adaptation and implementation of the World Health Organization’s Caregiver Skills Training in Ethiopia. Data collection included (1) a consultation and review, comprising stakeholder meetings, review of draft Caregiver Skills Training materials and feedback from Ethiopian Master Trainees and (2) a pre-pilot including quantitative feasibility and acceptability measures and qualitative interviews with caregivers (n = 9) and programme facilitators/observers (n = 5). The consultation participants indicated that the Caregiver Skills Training addresses an urgent need and is relevant to the Ethiopian context. Several adaptations were proposed, including more emphasis on psycho-education, stigma, parental feelings of guilt and expectations of a cure. The adapted Caregiver Skills Training was pre-piloted with excellent participation (100%) and retention (90%) rates. Four themes were developed from the qualitative data: (1) Programme acceptability and relevance, (2) Perceived programme benefits, (3) Challenges and barriers and (4) Suggestions for improvement. The World Health Organization’s Caregiver Skills Training addresses a local need and, with careful adaptations, is feasible and acceptable to be implemented in Ethiopia. These findings may have relevance to low-resource settings worldwide.
More than 80 genes associated with human photoreceptor degenerations have been identified. Attention must now turn toward defining the mechanisms that lead to photoreceptor death, which occurs years to decades after the birth of the cells. Consequently, this review focuses on topics that offer insights into such mechanisms, including the one-hit or constant risk model of photoreceptor death; topological patterns of photoreceptor degeneration; mutations in ubiquitously expressed splicing factor genes associated only with photoreceptor degeneration; disorders of the retinal pigment epithelium; modifier genes; and global gene expression analysis of the retina, which will greatly increase our understanding of the downstream events that occur in response to a mutation.
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