Parental needs in infant’s end of life and bereavement in NICU: A qualitative study

Abstract

Background and Aims: Newborn death is an unexpected outcome for parents. Parents are faced with several needs in their infant’s end-of-life. The health care team is responsible to meet these needs. This qualitative study aim was to explore parental needs in infant end-of-life and bereavement. Materials and Methods: For this qualitative study, 24 single semi-structure interviews were done. A qualitative content analysis method was used. Sampling was conducted on purpose with maximum variation in five Neonatal Intensive Care Unit (NICU) environments in Isfahan city. Inclusion criteria for nurses and doctors were having at least one experience of caring for an infant and their family at end-of-life. Inclusion criteria for parents and their families were having at least one infant at end of life or had lost their infant during 6 months before in NICU. Results: Data analysis uncovered two main themes. Family’s support needs with two subthemes (family’s support needs before infant’s death and family’s support needs after infant’s death) and family’s preparatory needs upon infant’s death with two subthemes (management of the bad news of infant’s death by treatment team and management of the bad news of infant’s death by family). Discussion: The mourning mother’s need for her husband’s presence by her side, getting hospitalized in a separate room, and the management of the news of the infant’s death by father and family were among items rarely pointed out in other studies. Exploration of these needs can be helpful for the health care team for providing care.