Bereaved mothers’ and nurses’ experiences of neonatal palliative and bereavement care in Iran: a qualitative content analysis

The death of a newborn in a neonatal intensive care unit is a profound experience for parents and nurses. Understanding how bereaved mothers and nurses experience communication, parental participation, farewell practices and continuing support can inform care that is responsive to families’ individual and cultural preferences. This study explored bereaved mothers’ and neonatal intensive care unit nurses’ experiences of neonatal palliative and bereavement care in Iran and examined similarities and differences between their accounts. A qualitative descriptive study using conventional content analysis was conducted in the neonatal intensive care units of two tertiary university hospitals in Iran. Participants were selected through purposive sampling with maximum variation. Individual, semi structured, face to face interviews were conducted with mothers who had experienced the death of a newborn during the previous 12 months and nurses with experience caring for newborns and families during end-of-life care. Data were collected from March 2024 to January 2025. Interviews were audio recorded, transcribed verbatim, anonymized and analyzed inductively using MAXQDA Analytics Pro 2020. Credibility, dependability, confirmability and transferability were supported through transcript review, independent coding, participant feedback, research team discussions, reflexive memo writing and maintenance of an audit trail. Fifteen bereaved mothers and 18 neonatal intensive care unit nurses participated. Analysis generated three themes: losing and reclaiming maternal agency during neonatal end of life care, nurses’ emotional labor in sustaining compassionate bereavement care and building a culturally responsive continuum of neonatal palliative and bereavement care. Mothers described receiving fragmented or indirect information, having restricted opportunities for presence and participation and seeking meaningful ways to acknowledge and remember their newborn. Nurses described providing emotional support while managing their own responses, professional responsibilities, educational preparation and organizational conditions. The accounts of both groups emphasized compassionate communication, respectful recognition of the newborn, individualized memory making, spiritual sensitivity and continuing support. Differences between their accounts concerned family mediated disclosure, maternal participation, opportunities for presence and touch, professional emotional expression and responsibility for follow up care. Participants’ accounts suggest that neonatal palliative and bereavement care may be strengthened by directly assessing each mother’s preferences for communication and participation, sensitively offering individualized opportunities for farewell and memory making, and establishing clearly coordinated follow-up care. Education, reflective support and supportive organizational processes may assist nurses in providing compassionate care to newborns and bereaved families.