Background: Disability inclusive youth research, involving youth with disabilities in the design, implementation and dissemination of study data, is still limited in Africa.
Objectives: To describe and reflect on the experiences of involving youth with disabilities in an exploratory research study, focused on disability-inclusive education and employment in 7 African countries.
Method: 12 youths with different impairments, aged 18 to 35, were employed as researchers in Ethiopia, Ghana, Kenya, Nigeria, Rwanda, Senegal and Uganda. Youth researchers contributed to the data collection and analysis of interviews with 210 youth with disabilities. 24 youth advisors with disabilities formed two youth advisory groups (YAG) of 12 advisors each in the regional hub countries Ghana and Uganda. The YAGs met 4 times during the project and contributed to the study design, data collection, data analysis and dissemination activities. In addition, 4 workshops were held with the Ugandan YAG to develop a participatory film.
Results: Together with the youth participants, we reflected on the experiences of involving youth with disabilities and conducting research with, by and on youth with disabilities. We highlighted ethics and safeguarding, recruitment and representation, exploring experiences and data quality, participatory dissemination, accessibility, capacity building and networking as key areas of consideration and benefit in this project.
Conclusion: Participatory research with youth with disabilities is feasible, enriching, and key to inclusive research that informs education and employment policy and practices.
Contribution: Lessons learned from youth involvement in a disability inclusive research programme, focused on education and employment in 7 African countries.
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http://dx.doi.org/10.4102/ajod.v13i0.1491 | DOI Listing |
Autism Res
January 2025
Department of Allied Health Sciences, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
Echolalia, the immediate or delayed repetition of speech, is a core diagnostic criterion for autism spectrum disorder. It has been studied for over 50 years and is well-described; however, no consensus on prevalence estimates exists for echolalia's occurrence in autistic youth. The current study sought to (1) describe endorsement of echolalia-related items using parent-, teacher-, and clinician-reports in a well-validated sample of autistic youth and (2) characterize relations between echolalia and other key factors, including age, language ability, and repetitive behaviors.
View Article and Find Full Text PDFClin Exp Allergy
January 2025
National Clinical Research Center for Child Health and Disorders, Department of Dermatology, Children's Hospital of Chongqing Medical University, Ministry of Education Key Laboratory of Child Development and Disorders, Chongqing, China.
Orphanet J Rare Dis
January 2025
Department of Neurosurgery, Helios Klinikum Erfurt, Erfurt, Germany.
Background: NF2-related schwannomatosis (NF2) is associated with various tumors of the central and peripheral nervous system. There is a wide range of disabilities these patients may suffer from and there is no validated clinical classification for disease severity. We propose a clinical classification consisting of three severity grades to assist in patient management.
View Article and Find Full Text PDFBMC Public Health
January 2025
Department of Social Medicine, School of Public Health, Shanxi Medical University, Taiyuan, Shanxi, 030001, China.
Background: Hearing loss significantly affects children's lives; however, the health-related quality of life (QoL) of children with this disability is not well measured. We sought to develop a reliable and valid measure of health-related QoL in children with hearing loss.
Methods: We constructed a conceptual framework to assess the QoL of children with hearing loss based on the Pediatric Quality of Life Inventory™ Version 4.
J Inherit Metab Dis
January 2025
Department of Pediatrics, Emma Children's Hospital, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.
Gyrate atrophy of the choroid and retina (GACR, OMIM #258870) is a rare inherited metabolic disorder characterized by progressive chorioretinal degeneration and hyperornithinemia. Current therapeutic modalities potentially slow disease progression but are not successful in preventing blindness. To allow for trial development, increased knowledge of the clinical phenotype and current therapeutic outcomes is required.
View Article and Find Full Text PDFEnter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!