摘要：Some results of a larger research aimed to evaluate de quality of life of families with 0 to 2 years old children with genetic malformation are presented. Quality of life was analyzed related to the child’s age, other sociodemographic variables, the parent’s information about the malformation and the clinical characteristics of the diagnostic. A descriptive-correlational design was used, with group comparison by age and type of malformation. The ECLAMC instrument was used for the medical evaluation and a semi-structured interview was designed for the principal caregiver to evaluate the quality of life domains described by Rodríguez (1995), and the quality of the information about the malformation and its treatment. The final sample was constituted by 36 families, with 24 girls and 14 boys with diverse genetic malformations. Principal results showed no significant differences in the quality of life by the child’s gender or age, neither by the parents’ age. A significant relation was found between the type of malformation and the quality of life in the functional status domain, and between the mother’s occupation and the quality of information about the malformation and its treatment. Psychological functioning was the most affected domain. Results are discussed in the light of relevant information and the politics in health attention services
其他摘要：Some results of a larger research aimed to evaluate de quality of life of families with 0 to 2 years old children with genetic malformation are presented. Quality of life was analyzed related to the child’s age, other sociodemographic variables, the parent’s information about the malformation and the clinical characteristics of the diagnostic. A descriptive-correlational design was used, with group comparison by age and type of malformation. The ECLAMC instrument was used for the medical evaluation and a semi-structured interview was designed for the principal caregiver to evaluate the quality of life domains described by Rodríguez (1995), and the quality of the information about the malformation and its treatment. The final sample was constituted by 36 families, with 24 girls and 14 boys with diverse genetic malformations. Principal results showed no significant differences in the quality of life by the child’s gender or age, neither by the parents’ age. A significant relation was found between the type of malformation and the quality of life in the functional status domain, and between the mother’s occupation and the quality of information about the malformation and its treatment. Psychological functioning was the most affected domain. Results are discussed in the light of relevant information and the politics in health attention services
