Caregiving Challenges, Service Needs, Impact and Future Care for Autism in Uganda

References

• Abubakar, A., Ssewanyana, D., & Newton, C. R. (2016). A systematic review of research on autism spectrum disorders in Sub-Saharan Africa. Behavioural Neurology, 2016, 1–14. https://doi.org/10.1155/2016/3501910
   Web of Science ®Google Scholar
• American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th) ed.). American Psychiatric Publishing.
   Google Scholar
• Bello-Mojeed, M., Ani, C., Lagunju, I., & Omigbodun, O. (2016). Feasibility of parent-mediated behavioural intervention for behavioural problems in children with Autism Spectrum Disorder in Nigeria: A pilot study. Child and Adolescent Psychiatry and Mental Health, 10(1). https://doi.org/10.1186/s13034-016-0117-4
   PubMedGoogle Scholar
• Brantlinger, E., Jimenez, R., Klingner, J., Pugach, M., & Richardson, V. (2005). Qualitative studies in special education. Exceptional Children, 71(2), 195–207. https://doi.org/10.1177/001440290507100205
   Web of Science ®Google Scholar
• Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
   Google Scholar
• Byrne, G., Sarma, K. M., Hendler, J., & O’Connell, A. (2018). On the spectrum, off the beaten path. A qualitative study of Irish parents’ experiences of raising a child with autism spectrum conditions. British Journal of Learning Disabilities, 46(3), 182–192. https://doi.org/10.1111/bld.12227
   Web of Science ®Google Scholar
• Dawson-Squibb, -J.-J., & de Vries, P. J. (2020). A comparative feasibility study of two parent education and training programmes for autism spectrum disorder in a low-resource South African setting. Autism, 24(8), 2269–2284. https://doi.org/10.1177/1362361320942988
   PubMed Web of Science ®Google Scholar
• Devilbiss, E. A., & Lee, B. K. (2014). Brief report: Trends in U.S. national autism awareness from 2004 to 2014: The impact of national autism awareness month. Journal of Autism and Developmental Disorders, 44(12), 3271–3273. https://doi.org/10.1007/s10803-014-2160-4
   PubMed Web of Science ®Google Scholar
• Elsabbagh, M., Divan, G., Koh, Y.-J., Kim, Y. S., Kauchali, S., Marcín, C., Montiel-Nava, C., Patel, V., Paula, C. S., Wang, C., Yasamy, M. T., & Fombonne, E. (2012). Global prevalence of autism and other pervasive developmental disorders: Global epidemiology of autism. Autism Research, 5(3), 160–179. https://doi.org/10.1002/aur.239
   PubMed Web of Science ®Google Scholar
• Fewster, D., & Gurayah, T. (2015). First port of call: Facing the parents of autism spectrum disorder. South African Family Practice, 57(1), 31–34. https://doi.org/10.1080/20786190.2014.995917
   Web of Science ®Google Scholar
• Fleckman, J. M., Taylor, C. A., Storer, H. L., Andrinopoulos, K., Weil, L. E. G., Rubin-Miller, L., & Theall, K. P. (2018). Breaking the mold: Socio-ecologic factors to influence the development of non-harsh parenting strategies to reduce risk for child physical abuse. Children and Youth Services Review, 94, 274–283. https://doi.org/10.1016/j.childyouth.2018.10.019
   Web of Science ®Google Scholar
• Franz, L., Chambers, N., von Isenburg, M., & de Vries, P. J. (2017). Autism spectrum disorder in sub-Saharan Africa: A comprehensive scoping review: Autism spectrum disorder in sub-Saharan Africa. Autism Research, 10(5), 723–749. https://doi.org/10.1002/aur.1766
   PubMed Web of Science ®Google Scholar
• Gomes, P. T. M., Lima, L. H. L., Bueno, M. K. G., Araújo, L. A., & Souza, N. M. (2015). Autism in Brazil: A systematic review of family challenges and coping strategies. Jornal de Pediatria, 91(2), 111–121. https://doi.org/10.1016/j.jped.2014.08.009
   PubMed Web of Science ®Google Scholar
• Gona, J. K., Newton, C. R., Rimba, K., Mapenzi, R., Kihara, M., Van de Vijver, F. J. R., & Abubakar, A. (2015). Parents’ and professionals’ perceptions on causes and treatment options for Autism Spectrum Disorders (ASD) in a multicultural context on the Kenyan Coast. PLOS ONE, 10(8), e0132729. https://doi.org/10.1371/journal.pone.0132729
   PubMed Web of Science ®Google Scholar
• Guler, J., de Vries, P. J., Seris, N., Shabalala, N., & Franz, L. (2018). The importance of context in early autism intervention: A qualitative South African study. Autism, 22(8), 1005–1017. https://doi.org/10.1177/1362361317716604
   PubMed Web of Science ®Google Scholar
• Igwe, M. N., Ahanotu, A. C., Bakare, M. O., Achor, J. U., & Igwe, C. (2011). Assessment of knowledge about childhood autism among paediatric and psychiatric nurses in Ebonyi state, Nigeria. Child and Adolescent Psychiatry and Mental Health, 5(1), 1. https://doi.org/10.1186/1753-2000-5-1
   PubMedGoogle Scholar
• Kakkar, J., & Srivastava, P. (n.d.). Challenges and coping among parents having children with autism spectrum disorder. 10.
   Google Scholar
• Kakooza-Mwesige, A., Ssebyala, K., Karamagi, C., Kiguli, S., Smith, K., Anderson, M. C., Croen, L. A., Trevathan, E., Hansen, R., Smith, D., & Grether, J. K. (2014). Adaptation of the “ten questions” to screen for autism and other neurodevelopmental disorders in Uganda. Autism, 18(4), 447–457. https://doi.org/10.1177/1362361313475848
   PubMed Web of Science ®Google Scholar
• Minhas, A., Vajaratkar, V., Divan, G., Hamdani, S. U., Leadbitter, K., Taylor, C., Aldred, C., Tariq, A., Tariq, M., Cardoza, P., Green, J., Patel, V., & Rahman, A. (2015). Parents’ perspectives on care of children with autistic spectrum disorder in South Asia – Views from Pakistan and India. International Review of Psychiatry, 27(3), 247–256. https://doi.org/10.3109/09540261.2015.1049128
   PubMed Web of Science ®Google Scholar
• Presmanes Hill, A., Zuckerman, K., & Fombonne, E. (2015). Epidemiology of autism spectrum disorders. In M. de Los A. Robinson-Agramonte (Eds.), Translational approaches to autism spectrum disorder (pp. 13–38). Springer International Publishing. http://link.springer.com/10.1007/978-3-319-16321-5_2
   Google Scholar
• Ruparelia, K., Abubakar, A., Badoe, E., Bakare, M., Visser, K., Chugani, D. C., Chugani, H. T., Donald, K. A., Wilmshurst, J. M., Shih, A., Skuse, D., & Newton, C. R. (2016). Autism spectrum disorders in Africa: current challenges in identification, assessment, and treatment: A report on the international child neurology association meeting on ASD in Africa, Ghana. Journal of Child Neurology, 31(8), 1018–1026. https://doi.org/10.1177/0883073816635748
   PubMed Web of Science ®Google Scholar
• Skotarczak, L., & Lee, G. K. (2015). Effects of parent management training programs on disruptive behavior for children with a developmental disability: A meta-analysis. Research in Developmental Disabilities, 38, 272–287. https://doi.org/10.1016/j.ridd.2014.12.004
   PubMed Web of Science ®Google Scholar
• Tekola, B., Baheretibeb, Y., Roth, I., Tilahun, D., Fekadu, A., Hanlon, C., & Hoekstra, R. A. (2016). Challenges and opportunities to improve autism services in low-income countries: Lessons from a situational analysis in Ethiopia. Global Mental Health, 3. https://doi.org/10.1017/gmh.2016.17
   Google Scholar
• Walsh, F. (1998). Strengthening family resilience. Guilford Press.
   Google Scholar
• Zablotsky, B., Bradshaw, C. P., & Stuart, E. A. (2013). The association between mental health, stress, and coping supports in mothers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(6), 1380–1393. https://doi.org/10.1007/s10803-012-1693-7
   PubMed Web of Science ®Google Scholar