Being parents of extremely preterm children, from a long-term perspective : A qualitative study of parents' experiences

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