1. Zhang, Cheng-Lu MSN, RN
  2. Wu, Ying RN
  3. Bao, Ying RN
  4. Jiang, Wen-Yi RN
  5. Hu, Xiao-Jing PhD, RN


Background: Biliary atresia is a rare and serious neonatal disease that affects the quality of life of both infants and parents. There is currently limited literature on the experiences of parents with infants diagnosed with biliary atresia.


Purpose: To explore the psychological journey and coping styles of parents of infants with biliary atresia in a single center in Shanghai, China.


Methods: A qualitative study design was used. Face-to-face and semistructured interviews were conducted with 10 parents of infants with biliary atresia. Colaizzi's method of data analysis was utilized, using NVivo 11.0 software.


Results: The psychological journey and coping styles of parents could be divided into 4 stages. Different themes were extracted at different stages: before diagnosis, parents experienced complex emotions and actively sought treatment; at the diagnosis stage, negative emotions dominated and parents convinced themselves to accept reality; in the postoperative stage, positive emotions, accepting reality, active response, and the need to learn to take care of their infant gradually appeared; and at the discharge stage, parents accepted the coexistence of positive and negative emotions and the variety of needs that emerged.


Implications for Practice: The findings of the study may help healthcare professionals identify and focus on the psychological needs of parents of infants with biliary atresia, leading them to implement effective coping strategies to increase the caregiving ability of parents.


Implications for Research: Future research should explore the effects of supportive interventions for parents of infants with serious chronic illnesses.