Families’ experiences in oral health care of Down Syndrome children from a foundation in Bucaramanga, Colombia

Abstract

Introduction: several studies highlight the importance of the relationship between family dynamics and oral hygiene in people with intellectual disabilities. In the case of children with Down Syndrome (DS), the studies generally focus on clinical aspects, disregarding the factors that can influence the way families experience oral health care. Understanding these experiences is key to contributing from the professional practice to the improvement in the quality of life of this population group. Methods: qualitative, phenomenological study in eight families of children with DS, using in-depth and episodic interviews. Results: the experiences go beyond good hygiene practices, since caregivers tend no not separate other fundamental aspects of their children’s lives. This is important from a comprehensive view of human beings, their health and care. The experiences are characterized by a preeminence of females’ roles and the fathers’ absence or presence, in addition to daily experience, social support, and opportunities. Conclusions: experiences during oral hygiene practices in families are gratifying in cases where they discover that their children become autonomous to carry out their own oral health care. In most families, mothers accompany and reinforce. However, it was shown that women feel they are not capable enough to help their children when they notice no progress in children’s autonomy to perform their own oral health care.

Keywords

• families
• life changing events
• child care
• down syndrome
• oral health