Jornal de Pediatria
Print version ISSN 0021-7557
BARREIRE, Simone G. et al. Quality of life of children with stomas: the children and mothers' point of view. J. Pediatr. (Rio J.) [online]. 2003, vol.79, n.1, pp. 55-62. ISSN 0021-7557. http://dx.doi.org/10.1590/S0021-75572003000100010.
Objective: to analyze the quality of life of children with stomas according to the children and mothers' point of view; to compare the results related to quality of life in both groups, and to verify the statistical associations between those aspects and children's demographic and clinical data. Methods: after the fulfilling ethical requirements, the specific data were obtained using the Autoquestionnaire Qualité de Vie Enfant Imagé, adapted and validated for Brazilian culture and also for this study by Assumpção Jr. et al.. It is composed by 26 questions, 18 of them are distributed among four factors: Functions, Family, Autonomy and Leisure. Results: twenty children, aged 4 to 12 years, from a Specialized Outpatient Ostomy Care Center for Children and their respective mothers answered the questionnaire. Ten boys and 10 girls participated, their mean age was 8.7 (SD = 2.64) years, with the predominance of Caucasians (55.0%), and elementary education level (65.0%). Clinical profile shows a predominance of urinary stomas (55.0%) caused by congenital diseases (60.0%). Related to quality of life, the total mean scores were 51.95 (SD = 7.90) and 49.60 (SD = 5.60), respectively for children and mothers, without statistically significant difference. Regarding each factor, the patients' scores were 8.14, 8.29, 10.27 and 11.41, respectively for autonomy, leisure, functions and family. Some statistically significant associations were verified between education level and mothers' quality of life (r = -0.56) and children's quality of life (r = -0.63), and also between mothers' quality of life and family (r = 0.86), autonomy (r = 0.60) and functions (r = 0.59). Conclusions: This study improves the comprehension about quality of life of children with stoma as well as some of these aspects on their mothers' point of view.
Keywords : ostomy care; stomal therapy; pediatric stomas; quality of life; AUQEI.