Barros Alina Lúcia Oliveira, Barros Amanda Oliveira, Barros Geni Leda de Medeiros, Santos Maria Teresa Botti Rodrigues
Unidade de Diagnóstico Oral e Odontológico para Pacientes Especiais, Universidade Federal de Sergipe. R. Cláudio Batista - lado par, Santo Antônio. 49060-102 Aracaju SE Brasil.
Universidade Tiradentes. Aracaju SE Brasil.
Cien Saude Colet. 2017 Nov;22(11):3625-3634. 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.
本研究的目的是评估患有和未患有唐氏综合征的儿童/青少年照顾者的概况及负担。通过关于照顾者概况及负担的问卷（ Zarit负担访谈）和儿童/青少年概况问卷进行评估。这些问卷应用于168名照顾者。采用卡方检验、 Fisher精确检验和方差分析，显著性水平设定为α = 5%。两组均由84名参与者组成，残疾组的照顾者中女性比例显著更高（p = 0.001）、年龄在41 - 60岁组的比例更高（p < 0.001）、无职业者比例更高（p < 0.001）、人均收入低者比例更高（p < 0.001）、受教育程度低者比例更高（p = 0.021）、宗教信仰为天主教者比例更高（p = 0.001）、健康问题更多者比例更高（p < 0.001）、持续用药者比例更高（p < 0.001）以及负担水平为中等者比例更高（p < 0.001）。残疾儿童/青少年在进食（p = 0.051）、洗澡（p = 0.006）、穿衣（p = 0.042）、括约肌控制（p = 0.027）和私密卫生方面（p < 0.001）需要显著更多的帮助。与正常反应性儿童/青少年的照顾者相比，唐氏综合征儿童/青少年的照顾者负担为中等。
