Preterm survivors born at 23 and 24 weeks are a growing population. However, the risks for health and developmental consequences increase the earlier a child is born. It is also known that the birth of a child extremely preterm, as well as the possible long-term morbidities of a preterm-born child, pose a challenge for the parents. The aim of this qualitative thesis was to explore the experiences of families with children born at 23–24 weeks of gestation. Using a qualitative description approach and a semi-structured interview, 29 mothers and eight fathers of children born at 23–24 weeks of gestation were interviewed. In addition, 18 children and adolescents born at 23–24 weeks of gestation were interviewed. The children were born in between 2002-2014 and had received active neonatal care. The interviews were thematically analysed.

The results showed that the mothers’ accounts described the lives of their children born at 23 weeks of gestation as active and rich, even in the midst of the children’s long-term health and learning challenges. The mothers were dedicated to parenting and they also expressed feelings of gratitude. Parents of children born at 23–24 weeks, when describing retrospectively the bonding process between themselves and their infant, had often experienced the bonding as natural or even easy, despite the traumatic start to parenthood. Support from NICU staff, participation in infant care, parent-infant physical closeness and earlier parental experience were reported to enhance the bonding process. In the preterm survivors’ interviews, the children and adolescents exhibited different perspectives in terms of how they had experienced the effects of their extremely premature birth: from reporting no effects at all to identifying some small or moderate, mostly physical health-related challenges. One group of children did not connect their challenges to prematurity or overall reflected very little on their prematurity.

The results from this thesis highlight the need to include both parental perspectives as well as preterm survivors’ own experiences to assess neonatal care and its outcomes.