Nursing Experiences Applying Swanson's Caring Theory to Assist a Family Confronting the Impact of an Infant With CHARGE Syndrome

Abstract

The purpose of this study was to explore the experiences of nurses who applied Swanson's Caring Theory to assist coping in a family of an infant with CHARGE Syndrome. The patient was born with multiple organ hypoplasia and was diagnosed using genetic testing with CHARGE syndrome. The shock and sadness, coupled with returning home for care and the long and endless journey of rehabilitation, were the most significant challenges and pressures for the parents when taking care of the patient. The author used interviews, texting apps, and observations to collect data, and completed the recording process between September 21st and December 3rd, 2020. Based on the data, the primary nursing problem was caregiver role strain. The process of nursing was summarized as (1) the impact stage, when the family first faces the child's diagnosis of a rare disease; (2) the transition stage from the hospital to the home in the care situation; and (3) the re-impact stage when the child experiences developmental delays. Swanson's Caring Theory was applied in this study to guide nursing care. The five caring processes outlined in Swanson's Caring Theory include knowing, being with, doing for, enabling, and maintaining belief. The authors used these caring processes at every stage to provide an individualized caring plan that included attentively listening to parents' ideas, encouraging parents to express personal perceptions, providing strategies to enhance parents' caring skills, and establishing positive beliefs to improve confidence. Nursing personnel may apply Swanson's Caring Theory to assist families of children with rare diseases to not only gain positive beliefs in a grieving situation but also achieve a rewarding life.