Healthcare professionals as essential source of social support in early stages of parents’ adjustment to congenital malformations including esophageal atresia.
Résumé
Introduction
We sought to better understand the factors that affect parents' adjustment dynamics during the period from discovering a congenital abdominal anomaly to their child's first birthday.
Objectives
The primary objective was to explore how parents experienced this specific period using grounded theory analysis.
Methods
30 parents of children aged 13-35 months participated in a qualitative retrospective study. They faced esophageal atresia (10), diaphragmatic hernia (11) or intestinal atresia (9). Individual semi-structured interviews were conducted face to face or by phone and digitally audio recorded. Verbatim transcripts were analyzed using QSR Nvivo 11.
Results
Parents endured stressful events. They struggled to protect their vulnerable child and their own parental identity for three significant milestones: coping with the uncertainty of diag-nostic and prognostic following the discovery of an abnormality; collaborating with healthcare professionals (HCPs) in order to ensure the physical and emotional safety of their hospitalized child; going home with their child and normalizing the family's life. During the adaptive process, HCPs were the main sources of assessment of the pediatric situation. Their attitudes and behaviors modulated parents' perceptions of the social support provided and their beliefs in trust-based partnership. Some parents experienced appropriate support from HCPs, but others complained about insufficient support.
Conclusion
Parental confidence is mainly based on expressions of empathy, transparency and respect by the medical staff, as observed in other studies. Awareness-raising among HCPs is crucial since they play a key role in efficient parents' adjustment, even if they are not psychologists.