Experiencia familiar en la crianza de niños con síndrome de Down

Abstract

Objective: To analyze the family experience in raising children with Down síndrome. Methods: Qualitative, descriptive, phenomenological research. The study participants were members of family groups where children with Down syndrome live. After signing the informed consent by the study participants, semi-structured interviews were conducted with a total of 6 family groups since it was the moment when the information was saturated; the interviews were recorded and then transcribed following word by word to each of the informants to proceed with the analysis of the information following the guidelines of the theory based on the data, so that categories and subcategories of the discourse of the key informants emerged. Likewise, the ethical principles of autonomy, respect and confidentiality of the information obtained were complied with. Pseudonyms were used to protect the identity of the study participants. Results: For the family groups interviewed, learning of the child's diagnosis meant an unexpected event since they were informed at the time of birth, so acceptance of the diagnosis was a situation in which they experienced multiple emotional encounters and a process of family, economic and social adaptation. Conclusion: The family that has children with Down syndrome suffers a moment of great emotional impact that suggests an accompaniment by nursing professionals; a process where education is the fundamental role.