Burden of caregivers of children and adolescents with Down Syndrome

• Published in: Ciência & saude coletiva 2017-11, Vol.22 (11)
• Main Authors: Oliveira Barros, Alina Lucia, Amanda Oliveira Barros, Geni Leda deMedeiros Barros, Maria Teresa Botti Rodrigues Santos
• Format: Article
• Language: Portuguese
• Subjects: Adolescents; Bathing; Caregivers; Children; Children & youth; Disabilities; Down syndrome; Hygiene; Low level; Religion; Statistical tests; Studies; Teenagers; Variance analysis
• ISSN: 1413-8123; 1678-4561
• DOI: 10.1590/1413-812320172211.31102016

The aim of this study was to evaluate the profile and burden of caregivers of children/adolescents with and without Down syndrome. The evaluations were performed through questionnaires about the profile and burden of the caregivers (Zarit Burden Interview) and the profile of the children/adolescents. These questionnaires were applied to 168 caregivers. The chi-square test, Fisher's exact test, and analysis of variance were used with a significance level set at a = 5%. Both groups were composed of 84 participants, and the caregivers of the disabled group had a significantly higher percentage of females (p = 0.001), those in the 41-60 age group (p < 0.001), those who had no occupation (p < 0.001), those with a low per capita income (p < 0.001), those with a low level of schooling (p = 0.021), those who were Catholic in religion (p = 0.001), those who had more health problems (p < 0.001), those who continued the use of medication (p < 0.001), and those with a moderate level of burden (p < 0.001). The children/adolescents with disabilities needed significantly more help for eating (p = 0.051), bathing (p = 0.006), dressing (p = 0.042), sphincter control (p = 0.027), and intimate hygiene (p < 0.001). The caregivers of children/adolescents with Down syndrome presented a moderate burden compared to the caregivers of normoreactive children/adolescents.