The influence of siblings with typical development on the burden and quality of life of parents of adolescents with Down syndrome

Autores/as

Palabras clave:

Caregivers, Down syndrome, Family, Family Relations, Quality of life

Resumen

Objective
The objective of this study was to evaluate the influence of the presence of siblings with normal development on the burden and quality of life of parents of adolescents with Down syndrome.
Methods
Cross sectional and correlational study with 25 caregivers divided in two groups: parents who had only children with Down syndrome and parents with other children with normal development. The caregivers were selected from a convenient sample and answered the World Health Organization Quality of Life, Zarit Burden Interview and Brazil’s Economic Classification Criteria.
Results
It was found that both groups experienced moderate burden and regular quality of life for most families, with no significant difference.
Conclusion
It was concluded that the presence of siblings with normal development was not a factor influencing the burden and quality of life of parents of adolescents with Down syndrome.

Descargas

Los datos de descargas todavía no están disponibles.

Citas

Geok, C. K., Abdullah, K. L., & Kee, L. H. (2013). Quality of life among Malaysian mothers with a child with Down syndrome. International Journal of Nursing Practice, 19(4), 381-389. https://doi.org/10.1111/ijn.12083

Graj, E., Muscara, F., Anderson, V., Hearps, S., & McCarthy, M. (2021). Quality of life in parents of seriously Ill/ injured children: a prospective longitudinal study. Quality of Life Research, 30, 193-202. https://doi.org/10.1007/s11136-020-02624-0

Huiracocha, L., Almeida, C., Huiracocha, K., Arteaga, J., Arteaga, A., & Blume, S. (2017). Parenting children with Down syndrome: societal influences. Journal of Child Health Care, 21(4), 488-497. https://doi.org/10.1177/1367493517727131

Javalkar, K., Rak, E., Phillips, A., Haberman, C., Ferris, M., & Van Tilburg, M. (2017). Predictors of caregiver burden among mothers of children with chronic conditions. Children, 4(39), 2-10. https://doi.org/10.3390/children4050039

Marchal, J. P., Maurice-Stam, H., Hatzmann, J., Trotsenburg, P., & Grootenhuis, M. A. (2013). Health related quality of life in parents of six to eight year old with Down syndrome. Research in Developmental Disabilities, 34, 4239-4247. http://dx.doi.org/10.1016/j.ridd.2013.09.011

Mohammed, F. M., & Mustafa, M. A. (2016). Quality of life of cerebral palsy patients and their caregivers: a cross sectional study in rehabilitation center Khartoum-Sudan (2014 – 2015). Journal of Neurosciences in Rural Practice, 7(3), 355-361. http://dx.doi.org/10.4103/0976-3147.182778

Oliveira, E. F., & Limongi, S. C. O. (2011). Qualidade de vida de pais/cuidadores de crianças e adolescentes com síndrome de Down. Jornal Sociedade Brasileira de Fonoaudiologia, 23(4), 321-327. http://dx.doi.org/10.1590/S2179-64912011000400006

Pedroso, B., Pilatti, L. A., Gutierrez, G. L., & Picinin, C. T. (2010). Cálculo dos escores e estatística descritiva do WHOQOL-bref através do Microsoft Excel. Revista Brasileira Qualidade de Vida, 2, 31-33. http://dx.doi.org/10.3895/S2175-08582010000100004

Ronca, R. P., Rocha, M. M., Pozzi, D. C., Cymrot, R., & Blascovi-Assis, S. M. (2019). Síndrome de Down: irmãos fazem diferença na qualidade de vida dos pais? Psicologia Em Estudo, 24(2), 2-17. https://doi. org/10.4025/psicolestud.v24i0.44238

Scazufca, M. (2002). Brazilian version of the Burden Interview scale for the assessment of burden of care in carers of people with mental illnesses. Revista Brasileira de Psiquiatria, 24(1), 12-17. https://doi.org/10.1590/S1516-44462002000100006

Souza, M. P. C., Santos, S. M., Lima, M. M. C., Machado, J. M. P., Melo. M. M. M., Oliveira, E., H., C., & Guerreiro, J. F. (2019). Chromosomal analyses in genetic couseling of patients with developmental and congenital abnormalities from Belém, Pará State, Brazil: a retrospective study of 17 years. Revista Pan-Amazonia de Saúde, 10, e201901597. https://doi.org/10.5123/S2176-6223201901597

Toledano-Toledano, F., Rodríguez-Rey, R., Rubia, J. M., & Luna, D. (2019). A sociodemographic variables questionnaire (Q-SV) for research on Family caregivers of children with chronic disease. BMC Psychology, 7(85). https://doi.org/10.1186/s40359-019-0350-8

Wang, M., He, B., Wang, Y., Wu, F., Chen, X., Wang, W., & Yang, X. (2016). Depression among Low-Income Female Muslim Uyghur and Kazakh informal caregivers of disable elders in far Western China: influence on the caregivers burden and the disable elders quality of life. Plos One, 11(5), 1-18. https://doi.org/10.1371/journal.pone.0156382.

Publicado

2023-10-20

Cómo citar

RONCA, R. P., ROCHA, M. M., CAMPOS-POZZI, D., CYMROT, R., & BLASCOVI-ASSIS, S. M. (2023). The influence of siblings with typical development on the burden and quality of life of parents of adolescents with Down syndrome. Estudos De Psicologia, 40. Recuperado a partir de https://periodicos.puc-campinas.edu.br/estpsi/article/view/10071

Número

Sección

PSICOLOGIA DO DESENVOLVIMENTO