Reflections about being born extremely preterm in children and adolescents: A qualitative descriptive study

The survival of the smallest and most immature preterm infants, born at 23-24 weeks of gestation, has improved significantly. While there is a substantial amount of research on the neurocognitive and social outcomes of extremely premature birth, little is known about the survivors' subjective experience of being born preterm and its effect on later life.

The purpose was to study the subjective experiences of school-aged children born at 23-24 weeks of gestation, in order to understand their perspectives on how being born extremely early had affected their life.

Qualitative descriptive study.

18 school-aged children (12 girls and 6 boys, 7-15 years of age), born at 23 or 24 weeks of gestation, were interviewed. The semi-structured interview guide covered six topics about quality of life: somatic health, functioning, learning and memory, emotional health, social relations, experience of prematurity and its effect.

Most children reported memories, which were told to them by parents, about their premature birth and early life. Using qualitative thematic analysis, the narratives of the children were classified into three groups: 1) the go-with-the-flow children, who identified little or no effect of prematurity, 2) the ponderers, who reflected on some effects such as minor physical challenges, and 3) the hesitants, who either did not connect their challenges with prematurity, or did not produce much reflection overall.

Children had been told about their early life by the parents and repeated these memories indicating that prematurity had become a significant part of the family story. Differences were found how the children reflected on the impact of prematurity in their personal life. It is essential to include preterm survivors' own perspectives already during childhood and adolescence into the research of extreme prematurity.