Supporting a Tsonga learner living with Bardet-Biedl syndrome, a rare complex disability
African Journal of Disability
| Field | Value | |
| Title | Supporting a Tsonga learner living with Bardet-Biedl syndrome, a rare complex disability | |
| Creator | Shikwambana, Mfungana M. Fourie, Jean V. | |
| Description | Background: Bardet-Biedl syndrome (BBS) is a rare, systemic, hereditary disorder characterised by obesity, polydactyly, visual and auditory impairment, and cognitive disability. Providing quality education in appropriate schools for children who present with such complex chronic conditions is challenging.Objectives: This study explored the dimensions of psycho-educational support needs for a child with BBS in South Africa to contribute to the improvement of early detection and holistic interventions.Method: A descriptive in-depth qualitative case study of Gezani, an adolescent Tsonga boy diagnosed with BBS, was undertaken. Semi-structured interviews were conducted with his parents and teachers to ascertain the boy’s psycho-educational support needs. Medical reports provided information on the complexities and prognosis of the syndrome. Observations in the classroom corroborated the learner’s symptoms and behaviours.Results: Thematic content analysis revealed the key areas of support needs. Gezani’s cognitive disability required a modified, slow-paced curriculum. His visual impairment required mobility orientation training and learning Braille. His emotional needs were supported with psychotherapy to maintain a sense of well-being. Medical monitoring was recommended with interventions for walking and managing his diet and weight. Speech therapy supported his communication skills.Conclusion: Learners with multiple disabilities require carefully planned, individualised psycho-educational support programmes addressing their unique needs and delays with targeted remedial interventions in appropriate special needs schools.Contribution: This study informs educators about BBS and provides multi-faceted, holistic support. The Department of Basic Education could bring special schools and national policies in tighter alignment for learners presenting with complex disabilities. | |
| Publisher | AOSIS | |
| Date | 2023-12-04 | |
| Identifier | 10.4102/ajod.v12i0.1181 | |
| Source | African Journal of Disability; Vol 12 (2023); 9 pages 2226-7220 2223-9170 | |
| Language | eng | |
| Relation |
The following web links (URLs) may trigger a file download or direct you to an alternative webpage to gain access to a publication file format of the published article:
https://ajod.org/index.php/ajod/article/view/1181/2533
https://ajod.org/index.php/ajod/article/view/1181/2534
https://ajod.org/index.php/ajod/article/view/1181/2535
https://ajod.org/index.php/ajod/article/view/1181/2536
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