EXPERIENCE OF FAMILY MEMBERS AS PRIMARY CAREGIVERS TO CHILDREN WITH CONGENITAL ANOMALY
Jea Joel Mendoza-Dungca
Holy Angel University
Abstract
EXPERIENCE OF FAMILY MEMBERS AS PRIMARY CAREGIVERS TO CHILDREN WITH CONGENITAL ANOMALY Jea Joel Mendoza-Dungca, M.S.N., R.N. Doctoral Student, Graduate School, Holy Angel University, Sto. Rosario, Angeles City, Pampanga Background: Congenital anomaly is a condition affecting 1 in 33 infants every year. Having a baby born with anomaly does not only affect the patient himself but more so his family. Purpose: The aim of the study was to explore the experiences of families that act as a primary caregiver to children with any type of congenital anomaly. Methods: A phenomenological-heuristic research design was used in the study. Six informants willingly participated in the study under an informal, semi-structured interview with the main question “What is it like to care for a child with congenital anomaly?” duly selected thru purposive sampling. Results: The study revealed 7 main themes: Dealing with Tough Life, Money Talks: Sustaining your Child-s Needs, Family Affair: Helping One Another in Times of Crisis, Slaves of Our Emotions: Different Reactions to a Child with Congenital Anomaly, Intended Trials: God Challenging Your Conviction, Side Effects: The Negative Outcomes of having a Family Member with Congenital Anomaly and Confounded by Child-s Condition: Parents Dealing with their Child-s Special Needs. The study reflected the entirety of the participant-s experiences. These families needed attention same ways like their child. In conclusion, this phenomenon is tragic for the family, but with enough holistic support, early diagnosis and profound attention given to them, much can be done for the family. Conclusions: Caring for a child with birth defect is an unending process and takes a lifetime to be dealt with. Improving the efforts in diminishing such birth defect like pre-natal diagnosis and new born screening is essential to equip families with more knowledge and be financially prepared.
Keywords: congenital anomaly, phenomenological, heuristic
Topic: Others