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Abstract
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 servicesThis journal is registered under a Creative Commons Attribution 4.0 International Public License. Thus, this work may be reproduced, distributed, and publicly shared in digital format, as long as the names of the authors and Pontificia Universidad Javeriana are acknowledged. Others are allowed to quote, adapt, transform, auto-archive, republish, and create based on this material, for any purpose (even commercial ones), provided the authorship is duly acknowledged, a link to the original work is provided, and it is specified if changes have been made. Pontificia Universidad Javeriana does not hold the rights of published works and the authors are solely responsible for the contents of their works; they keep the moral, intellectual, privacy, and publicity rights. Approving the intervention of the work (review, copy-editing, translation, layout) and the following outreach, are granted through an use license and not through an assignment of rights. This means the journal and Pontificia Universidad Javeriana cannot be held responsible for any ethical malpractice by the authors. As a consequence of the protection granted by the use license, the journal is not required to publish recantations or modify information already published, unless the errata stems from the editorial management process. Publishing contents in this journal does not generate royalties for contributors.