Lived Experiences of Families With Children Diagnosed With Down Syndrome At Polangui, Albay

This study focused on the background of the case, lived experiences of each family having a child with Down syndrome and how the families deal and cope with the problems and issues they have encountered in relation to the child’s condition. The study was conducted in the municipality of Polangui, province of Albay, Philippines. The study was guided by Hill’s ABCX model and Bowen Family system’s theory. These theories explain how the family as an emotional unit is affected and copes with a stressor. In dealing with a certain stressor, several factors (i.e. event or stressor, internal and external family resources and family’s perception of the stressor) affect their coping mechanism, which can either be positive or negative (family crisis). This study utilized the qualitative research design specifically the Phenomenological approach by Creswell. The subjective statements were transcribed, coded and organized to facilitate analysis and drawing of conclusion. Also, documents sought and written field notes were used to triangulate the data to assure of its validity and reliability. From the analysis of data, three themes emerged. Each theme was composed of categories. The themes formulated are: (1) Primary care providers’ insights which focused separately on the child, child’s condition, experience as a whole and beliefs possessed by the key informants; (2) The family dealing with child’s condition which describes the families’ experiences with the phenomena. This include exploration on the initial reactions felt by the key informants, psycho-behavioral experiences, family mechanism and interactions, health and illness management, caring experiences, character and capability formation, social experiences, spiritual experiences, challenges and issues encountered and coping mechanisms; and lastly (3) the child as a family member composed of the following sub themes: child’s worth, looking through the child’s future and effects to family. Looking holistically through the families’ experiences of having a child with special needs, a model of care called as “Family Empowerment Model” was designed and formulated which aims to enhance the family and the child’s capability to cope with the condition.