Abstract
Caudal regression syndrome (CRS) is a rare spinal condition affecting a small portion of learners with physical disabilities. Due to the rarity of this condition, there is limited research into the associated social-emotional and academic support needs. The case of Jo-Anne3, a fourteen-year old girl with CRS, has been used in this study to investigate the physical, academic, and social-emotional support needs associated with CRS. An in-depth exploration into the symptoms of CRS (five different types), treatment and prognosis was conducted using a literature review. The literature review also allowed for an investigation into the role of inclusive education and special schools in South Africa. Bronfenbrenner’s bioecological model for human development was highlighted to the show the importance of systems and the effect of systemic factors on an individual with a disability. Bronfenbrenner’s model has been adapted in this study in order to create the ice-cream cone model for case conceptualisation. This model allows for a visual representation of how the domains of support needs, case history and systemic factors all interact affecting the well-being of the disabled individual. In order to collect data, interviews were conducted with relevant role players in Jo-Anne’s life, as well as using data from an artefact and photographs. Analysis of the data led to the emergence of three themes, domains of support needs, additional compounding factors, and systemic factors. The three domains of support needs, specifically physical, social-emotional and academic, are all interrelated. Furthermore, the physical symptoms lead to physical support needs as well as social-emotional and academic support needs. The specific support needs in the three domains that were identified include a need for mobility, catheterisation, identity and self-concept development, support to assist feelings of ‘fitting in’, especially in an able-bodied society, and academic support to improve concentration and understanding. The data showed that the support needs did not originate solely from caudal regression syndrome. The support needs also stem from factors such as the current life stage, family influence and background, school influence, and comorbid diagnoses, which in this case, are specifically ADHD and the presence of a cleft palate. The exploration of this case has shown that in order to fully understand the support needs of a condition such as CRS, additional factors have to be taken into account and therefore, support need to be reviewed for each individual case.
M.Ed.