Parents' experiences and psychosocial problems related to their preterm infants with congenital heart disease hospitalized in the neonatal intensive care unit: A descriptive phenomenological study

SABAZ N., ÇİYDEM E., Tosun S., Gundogdu Unlu S., TAŞTEKİN A.

Journal of Pediatric Nursing, cilt.86, ss.383-395, 2026 (SCI-Expanded, SSCI, Scopus) identifier identifier

  • Yayın Türü: Makale / Tam Makale
  • Cilt numarası: 86
  • Basım Tarihi: 2026
  • Doi Numarası: 10.1016/j.pedn.2025.11.033
  • Dergi Adı: Journal of Pediatric Nursing
  • Derginin Tarandığı İndeksler: Science Citation Index Expanded (SCI-EXPANDED), Social Sciences Citation Index (SSCI), Scopus, CINAHL, MEDLINE
  • Sayfa Sayıları: ss.383-395
  • Anahtar Kelimeler: Caregiver, Congenital heart disease, Neonatal intensive care, Parental experiences, Preterm infant
  • Marmara Üniversitesi Adresli: Evet

Özet

Purpose This study aimed to explore parents' experiences and psychosocial problems related to their preterm infants with congenital heart disease hospitalized in the neonatal intensive care unit. Methods Thirty parents were selected via a convenience sampling method, and in-depth individual interviews were carried out. The data were analyzed inductively using thematic analysis. Results Five main themes emerged: psychological symptoms, coping strategies, family relationships and social impacts, support and needs, and satisfaction with treatment and care. Conclusion Participants experienced not only grief but also traumatic stress, depression, anxiety, and somatic symptoms. They used a range of coping strategies, including problem-focused, emotional, physical, religious, avoidance, and resilience-based approaches. Many reported that their parental identity was shaken, pressured, inadequate, and distanced from their maternal role. These challenges affect marital relationships, sometimes strengthening emotional bonds but also reducing sexual intimacy and disrupting family routines and communication. Parents expressed the need for better bad news delivery, improved nurse communication, access to informational materials, more contact with their baby (photos/videos), extended visitation, and psychosocial and economic support. Despite these difficulties, they reported overall satisfaction with the treatment and care they received. Implications for practice The healthcare team should be trained in bad news delivery and communication to better support parents of preterm infants with congenital heart disease. Hospitals should offer informational resources, increase parental involvement, and provide access to photos or videos. Additionally, structured psychosocial and economic support is essential. Despite these challenges, parents reported their satisfaction, highlighting the need for family-centered care integration.