Parents' journey caring for a preterm infant until discharge from hospital-based neonatal home care-A challenging process to cope with.

Abstract

To present parents' lived experience of having a preterm infant cared for at the neonatal unit until discharge from hospital-based neonatal home care (HNHC). Becoming a parent to a preterm infant has been reported as an experience that may influence the parent's lifeworld also after discharge. Interventions have been implemented at the NICUs, for example introduction of family-centred care aiming to reduce parent-infant separation, increased integration of the parents, to support them in their altered parental role. A descriptive phenomenological interview study. Six parent couples at a NICU in Sweden were included and interviewed individually after discharge from HNHC. The interviews were analysed from the perspective of caring sciences using a descriptive phenomenological method. The study followed the consolidated criteria for reporting qualitative research (COREQ) checklist. The journey from birth to discharge from hospital-based neonatal home care affected the parents' lifeworld. The parents' experiences differed. Mothers experienced more physiological reactions that triggered feelings of existential loneliness and guilt and difficulties in combining the role of mother with partner. The fathers faced conflicts managing their partners' demands, family challenges and employers who claimed their time and energy, which negatively affected their transition into fatherhood. Both mothers and fathers experienced ambivalent feelings in the relationships with the professional staff, which was more strongly expressed by the mothers. It is important for healthcare providers to help parents clarify their individual needs and values in caring for a preterm infant to help them achieve parental and family well-being. These findings can guide healthcare providers to help parents improve care for their preterm infants in the NICU. Integrating a person-centred approach such as supportive person-centred dialogues focused on parents' individual needs might be one way to support parents.