RESUMO
BACKGROUND: In recent decades, modern neonatal intensive care has improved, increasing the survival of extremely preterm children. Few studies have examined the experiences of parents of extremely preterm children from a long-term perspective. AIM: To describe parents' experiences of parenting extremely preterm children during their childhood and transition to adulthood. STUDY DESIGN: A qualitative interview study with a descriptive design. SUBJECTS: Thirteen parents of eleven children born at 24 gestational weeks in Sweden, 1990-1992, participated in individual semi-structured interviews. OUTCOME MEASURES: Data were analyzed using qualitative reflexive thematic analysis. RESULT: Five themes forming a timeline were created in the analytic process: parenthood, at the NICU, young childhood, adolescence, and adulthood. Various aspects affecting parenthood were described throughout the timeline, and occasionally the parents experienced difficulties dealing with their children's special physical and/or mental needs. Today, some families have established a functioning situation despite their children's physical and/or mental difficulties, while some still struggle with their children's everyday life. CONCLUSION: Having an extremely preterm family member profoundly affects the whole family for various lengths of time. Parents expressed a need for support from both healthcare and school throughout their children's childhood and in their transition to adulthood, although the need varies between parent-child pairs. By studying the parents' experiences, their need for support can be further recognized and understood, and developed and improved accordingly.