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Psychological Journey and Coping Styles of Parents of Infants With Biliary Atresia: A Single-Center Qualitative Study

Cheng-Lu Zhang1, Ying Wu, Ying Bao

  • 1Departments of General Surgery (Mss Zhang, Wu, Bao, and Jiang) and Nursing (Dr Hu), National Children's Medical Center, Children's Hospital of Fudan University, Shanghai, China.

Advances in Neonatal Care : Official Journal of the National Association of Neonatal Nurses
|July 13, 2023
PubMed

Insights

Parents of infants with biliary atresia navigate a four-stage psychological journey, from complex emotions before diagnosis to accepting mixed emotions at discharge. Understanding these stages aids healthcare professionals in supporting families.

Area of Science:

  • Neonatal Medicine
  • Psychology
  • Qualitative Research

Background:

  • Biliary atresia is a severe neonatal condition impacting infant and parental quality of life.
  • Limited research exists on parental experiences with infants diagnosed with biliary atresia.

Purpose of the Study:

  • To investigate the psychological journey and coping mechanisms of parents with infants diagnosed with biliary atresia.
  • Study conducted at a single center in Shanghai, China.

Main Methods:

  • Qualitative study employing face-to-face, semi-structured interviews.
  • 10 parents of infants with biliary atresia participated.
  • Data analyzed using Colaizzi's method with NVivo 11.0 software.

Main Results:

  • Parental psychological journey identified in four distinct stages: pre-diagnosis, diagnosis, post-operative, and discharge.
  • Emotions evolved from complex and seeking treatment to negative, then gradually positive, and finally a mix of positive and negative emotions.
  • Coping styles adapted throughout the illness trajectory, including acceptance and active caregiving.

Conclusions:

  • Findings highlight the need for healthcare professionals to address parental psychological needs in biliary atresia cases.
  • Effective coping strategies can enhance parental caregiving abilities.
  • Further research on supportive interventions for parents of chronically ill infants is recommended.
Abstract

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