Gratitude, fragility and strength: Perspectives of adults born preterm about prematurity

Abstract

Aim The aim of the study was to explore how young adults thought that being born preterm had affected their lives. Methods Adult participants of a research cohort were questioned about their perspectives. Answers were analysed using mixed methods. Results Forty‐five participants evaluated their health at median score of 8/10. When asked about the meaning of being born preterm, 65% had positive self‐centred answers, invoking two main themes: being stronger/‘a fighter’/more resilient and being a survivor/chosen; 42% also reported negative themes, such as having health problems and a difficult start. All heard about their prematurity from their parents, 55% with positive child‐centred or healthcare system‐centred themes, 19% with neutral themes; 35% also heard negative parent‐centred themes (tragic experience, guilt, mother's health). When asked which words were associated with prematurity, participants mainly chose positive words for themselves and their family, but more negative words for how the media and society depicted prematurity. Answers were not correlated with adverse objective health measures. Conclusion Participants evaluated their health in a balanced fashion. Preterm‐born adults often feel that they have experienced positive transformations as a result of their traumatic start. They often have feelings of gratitude and strength, independent of health problems.

Being Parents of Extremely Preterm Children, from a Long-Term Perspective: A Qualitative Study of Parents’ Experiences

“…Adults born EPT rated their own health as an eight out of a tenpointed scale, even though 78 % of the group had at least one adverse health outcome [41]. The authors concluded that how the "story" of being born EPT was told by the parents is often how the EPT adult internalizes it.…”

Adults born prematurely prefer a periviability guideline that considers multiple prognostic factors beyond gestational age

“…While there have been several studies that have examined the quality of life of premature infants, [48][49][50][51] only three previous qualitative studies were conducted involving this particular stakeholder group. [52][53][54] The significant strength of this study is that it was the first to investigate the attitudes of adults born prematurely regarding periviability guidelines and personalisation at the limit of viability.…”