822
Views
3
CrossRef citations to date
0
Altmetric
Research Article

Caregivers’ perceptions and experience of caring for persons with Down syndrome in Kuwait: a qualitative study

, , , , , , , , , , & ORCID Icon show all
Pages 381-390 | Received 27 Nov 2020, Accepted 25 Mar 2021, Published online: 13 Apr 2021

References

  • Alesi, M. and Pepi, A. 2017. Physical activity engagement in young people with Down syndrome: Investigating parental beliefs. Journal of Applied Research in Intellectual Disabilities: JARID, 30, 71–83.
  • AlShati, A. 2019. Support for Down syndrome patients in Kuwait.
  • Ashworth, M., Palikara, O. and Van Herwegen, J. 2019. Comparing parental stress of children with neurodevelopmental disorders: The case of Williams syndrome, Down syndrome and autism spectrum disorders. Journal of Applied Research in Intellectual Disabilities: JARID, 32, 1047–1057.
  • Barros, A. L. O., Barros, A. O., Barros, G. L. M. and Santos, M. 2017. Burden of caregivers of children and adolescents with Down syndrome. Ciência & Saúde Coletiva, 22, 3625–3634.
  • Bertrand, R. 2019. Parents' perspective on having a child with Down syndrome in France. American Journal of Medical Genetics Part A, 179, 770–781.
  • Borthwick, C., Inchley, J. and Jones, J. 2019. Health promotion in adults with Down's syndrome: Experiences of caregivers. Journal of Intellectual Disabilities, https://doi.org/https://doi.org/10.1177/1744629519890956
  • Braun, V. and Clarke, V. 2006. Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.
  • Capone, G., Goyal, P., Ares, W. and Lannigan, E. 2006. Neurobehavioral disorders in children, adolescents, and young adults with Down syndrome. American Journal of Medical Genetics Part C, Seminars in Medical Genetics, 142C, 158–172.
  • Central Statistics Bureau. 2020. Population estimates in Kuwait by age, nationality and sex. Available at: <https://csb.gov.kw/Pages/Statistics_en?ID=67&ParentCatID=1>
  • Centre for Arab Genomic Studies. 2013. Down syndrome in the Arab world. Dubai: Division of Sheikh Hamdan Award for Medical Sciences. Available at: <http://www.cags.org.ae/Down%20Syndrome-English.pdf>
  • Corder, J. P., Al Ahbabi, F. J. S., Al Dhaheri, H. S. and Chedid, F. 2017. Demographics and co-occurring conditions in a clinic-based cohort with Down syndrome in the United Arab Emirates. American Journal of Medical Genetics Part A, 173, 2395–2407.
  • Diaz, K. M. 2020. Physical inactivity among parents of children with and without Down syndrome: The National Health Interview Survey. Journal of Intellectual Disability Research, 64, 38–44.
  • D'Souza, H., Lathan, A., Karmiloff-Smith, A. and Mareschal, D. 2020. Down syndrome and parental depression: A double hit on early expressive language development. Research in Developmental Disabilities, 100, 103613.
  • Gashmard, R., Ahmadi, F. and Kermanshahi, S. M. K. 2020. Coping strategies adopted by Iranian families of children with Down syndrome: A qualitative study. Medicine, 99, e20753.
  • Grieco, J., Pulsifer, M., Seligsohn, K., Skotko, B. and Schwartz, A. 2015. Down syndrome: Cognitive and behavioral functioning across the lifespan. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 169, 135–149.
  • Hsiao, C. Y. 2014. Family demands, social support and family functioning in Taiwanese families rearing children with Down syndrome. Journal of Intellectual Disability Research: JIDR, 58, 549–559.
  • Hu, X. 2020. Chinese fathers of children with intellectual disabilities: Their perceptions of the child, family functioning, and their own needs for emotional support. International Journal of Developmental Disabilities, 1–9. https://doi.org/https://doi.org/10.1080/20473869.2020.1716565
  • Huiracocha, L., Almeida, C., Huiracocha, K., Arteaga, J., Arteaga, A. and Blume, S. 2017. Parenting children with Down syndrome: Societal influences. Journal of Child Health Care: For Professionals Working with Children in the Hospital and Community, 21, 488–497.
  • Kalyoncu, I. O., Giray, F. E. and Tanboga, I. 2018. Parent's attitudes and knowledge on oral health in a group of individual with Down syndrome in Turkey. JPMA: The Journal of the Pakistan Medical Association, 68, 1368–1372. Available at: <https://www.ncbi.nlm.nih.gov/pubmed/30317267>
  • Kazemi, M., Salehi, M. and Kheirollahi, M. 2016. Down syndrome: Current status, challenges and future perspectives. International Journal of Molecular and Cellular Medicine, 5, 125–133. Available at: <https://www.ncbi.nlm.nih.gov/pubmed/27942498>
  • Krueger, K., Cless, J. D., Dyster, M., Reves, M., Steele, R. and Nelson Goff, B. S. 2019. Understanding the systems, contexts, behaviors, and strategies of parents advocating for their children with Down syndrome. Intellectual and Developmental Disabilities, 57, 146–157.
  • Lee, C. E., Burke, M. M., Arnold, C. K. and Owen, A. 2019. Comparing differences in support needs as perceived by parents of adult offspring with Down syndrome, autism spectrum disorder and cerebral palsy. Journal of Applied Research in Intellectual Disabilities: JARID, 32, 194–205.
  • Liu, C., Yao, X., Wang, M. and Du, L. 2020. Academic support for students with developmental disabilities in elementary schools: The roles and experiences of Chinese classroom teachers. International Journal of Developmental Disabilities, 66, 1–12.
  • Lou, S., Lanther, M. R., Hagenstjerne, N., Bjorn Petersen, O. and Vogel, I. 2020. “This is the child we were given”: A qualitative study of Danish parents' experiences of a prenatal Down syndrome diagnosis and their decision to continue the pregnancy. Sexual & Reproductive Healthcare: Official Journal of the Swedish Association of Midwives, 23, 100480.
  • Malak, R., Kostiukow, A., Krawczyk-Wasielewska, A., Mojs, E. and Samborski, W. 2015. Delays in motor development in children with Down syndrome. Medical Science Monitor, 21, 1904–1910.
  • Marshall, J., Tanner, J. P., Kozyr, Y. A. and Kirby, R. S. 2015. Services and supports for young children with Down syndrome: Parent and provider perspectives. Child: Care, Health and Development, 41, 365–373.
  • Mbugua, M. N., Kuria, M. W. and Ndetei, D. M. 2011. The prevalence of depression among family caregivers of children with intellectual disability in a rural setting in Kenya. International Journal of Family Medicine, 2011, 534513.
  • O’ Shea, M., O' Shea, C., Gibson, L., Leo, J. and Carty, C. 2018. The prevalence of obesity in children and young people with Down syndrome. Journal of Applied Research in Intellectual Disabilities, 31, 1225–1229.
  • Phillips, B. A., Conners, F. and Curtner-Smith, M. E. 2017. Parenting children with Down syndrome: An analysis of parenting styles, parenting dimensions, and parental stress. Research in Developmental Disabilities, 68, 9–19.
  • Santoro, J. D., Pagarkar, D., Chu, D. T., Rosso, M., Paulsen, K. C., Levitt, P. and Rafii, M. S. 2020. Neurologic complications of Down syndrome: A systematic review. Journal of Neurology, https://doi.org/https://doi.org/10.1007/s00415-020-10179-w
  • Scalioni, F., Carrada, C. F., Abreu, L., Ribeiro, R. A. and Paiva, S. M. 2018. Perception of parents/caregivers on the oral health of children/adolescents with Down syndrome. Special Care in Dentistry: Official Publication of the American Association of Hospital Dentists, the Academy of Dentistry for the Handicapped, and the American Society for Geriatric Dentistry, 38, 382–390.
  • Schimmel, M. S., Mimouni, F. B., Yosef, T. M. and Wasserteil, N. 2020. “Your baby has Down syndrome”: What is the preferable way to inform parents? Journal of Perinatology: Official Journal of the California Perinatal Association, 40, 1163–1166.
  • Smith, A. M., O'Rahelly, M. and Flanagan, O. 2019. Disclosing the diagnosis of Down syndrome: The experience of 50 Irish parents. Archives of Disease in Childhood, 104, 820–821.
  • Tong, A., Sainsbury, P. and Craig, J. 2007. Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care: Journal of the International Society for Quality in Health Care, 19, 349–357.
  • van den Driessen Mareeuw, F. A., Coppus, A. M. W., Delnoij, D. M. J. and de Vries, E. 2020. Quality of health care according to people with Down syndrome, their parents and support staff-A qualitative exploration. Journal of Applied Research in Intellectual Disabilities: JARID, 33, 496–514.
  • Van Herwegen, J., Ashworth, M. and Palikara, O. 2018. Parental views on special educational needs provision: Cross-syndrome comparisons in Williams Syndrome, Down Syndrome, and Autism Spectrum Disorders. Research in Developmental Disabilities, 80, 102–111.
  • World Health Organization. 2020. Genes and human diseases. Available at: <https://www.who.int/genomics/public/geneticdiseases/en/index2.html>

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.