Title: Experiences of family members caring for children with congenital anomaly
Abstract:
Congenital anomaly is a condition affecting 1 in 33 infants every year. Having a baby born with an anomaly does not only affect the patient himself but more so the people surrounding the patient which is his family. The aim of the study is to explore the experiences of the families that act as a primary caregiver to children with any type of congenital anomaly in order to enhance the quality of care provided by the health care system to the patient affected by the condition and also to give much holistic attention to the families who give care to the patient. A phenomenological-heuristic type of research design was used in the study. Six informants willingly participated in the study under an informal, semistructured interview with the main question “What is it like to care for a child with congenital anomaly?” 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. Take Away Notes: • For nurses and other associates of the health care team to have a better view about this unique experience of families caring for children with congenital anomaly. More than the medical assistance they are more in need for establishing better rapport and must be provided with rich data in order for them to be educated about their child’s condition that is necessary for them to act and move forward with getting their child better. • Emphasize on the importance of doing pre-natal diagnosis and new born screening which should be an essential part in improving our efforts in diminishing congenital anomalies if not as these can help the families to be equipped with more knowledge and probably be financially prepared. • Empower these families to keep on striving harder for their children. Establishing support groups can be really helpful. Getting along with other families of the same situation doesn’t only give you a way to voice out your emotions but also it can also serve as a way to get idea on how to effectively cope up aside from sympathy.
