Forever premature: Adults born preterm and their life challenges

BACKGROUND: Adults born preterm face greater social, cognitive, mental and physical challenges in adulthood than their full term born peers according to longitudinal studies. In contrast, little is known about the lived experiences of adults born preterm. OBJECTIVE: The study investigates the lived experiences of adults born preterm across the life course and their views on health care support. METHODS: A qualitative study of 21 participants completing semi structured interviews analyzed through content analysis. RESULTS: Over half of adults born preterm report trauma and feeling of otherness since early childhood, high sensitivity to the environment, higher introversion/shyness and social or performance related anxiety. Over half reported that their parents were traumatized by the preterm birth and tried to compensate by overprotective parenting that, however, stifled them becoming independent. Over half experienced bullying victimization and many have continuing mental health problems. Overload by demands in school or work is a consistent theme that makes it hard to have the energy to socialize. Many received physical therapy in childhood and most had psychotherapy in adulthood. Many feel that health professionals trivialize the long-term effects of prematurity and most find support from their parents or peer network. CONCLUSIONS: Prematurity has significantly shaped the life of adults born preterm. Greater awareness and recognition of the unique needs of this group are essential to provide adequate support. Existing services fail to address these needs highlighting an urgent demand for enhanced social and psychological services for educational and workplace settings.