Experiencias de familias en el cuidado de la salud bucal de niños de Fundown en Bucaramanga

Abstract

Introduction: One distinctive characteristic of Down syndrome (henceforth, “DS”) is the decrease in motor ability caused by muscle hypotonic, therefore affected children cannot perform proper oral hygiene practices by themselves to maintain a healthy oral condition. In this sense, the upbringing of children with DS implies for families a greater responsibility in their care and adaptation to society, generating higher levels of stress when compared with families of children without intellectual disabilities. Objective: To describe the experiences of families in the oral health care of children with Down syndrome. Methods: A qualitative study with a phenomenological approach was conducted with eight families of children who regularly attended Fundown in Bucaramanga, Colombia during the second semester of 2017. The descriptive methodology proposed by Husserl was used. In-depth interviews, episodic interviews, participant observation and photographic records were performed. The analysis and interpretation of the information was done through manual coding. 307 fragments were extracted, 90 labels were placed and organized into a central theme, four categories and eight subcategories. Triangulation (interview, observation, photographs) and consensus of researchers were done. Results: Family experiences go beyond oral health care, as the caregivers do not separate it from other fundamental aspects of their children's lives. This is important from an integral view of the human being, his health and his care. The experiences were characterized by the preeminence of the female role, influenced by the absence/presence of the paternal role, and additionally nourished with everyday practices. Social support and opportunities are spaces that allow the experiences to be evaluated and help identify certain aspects that make them positive or negative. Conclusions: It is necessary to understand from a social point of view, what it means for families to care for children with DS; additionally ways of support that empower them and strengthen them to respond in a comprehensive and effective way to the challenging endeavor of a SD journey must be secured.