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Outcomes from the other side

Neil Marlow1, Sarra Hoy, Alexandra Peacock

  • 1UCL Elizabeth Garrett Anderson Institute for Women's Health, University College London, London, UK.

Seminars in Fetal & Neonatal Medicine
|June 17, 2020
PubMed

Insights

Parents and individuals born preterm should be included in research design. Their lived experiences highlight the need for longer follow-up, better educational acknowledgment of prematurity, and adult services addressing early birth consequences.

Area of Science:

  • Perinatal Medicine
  • Developmental Psychology
  • Patient Advocacy

Background:

  • Limited involvement of parents and preterm individuals in research design.
  • Outcome measures may not reflect the lived experiences of those affected by preterm birth.

Purpose of the Study:

  • To explore the lived experiences of individuals born very preterm and their parents.
  • To advocate for the inclusion of these perspectives in research design and outcome reporting.

Main Methods:

  • Qualitative exploration of lived experiences.
  • Analysis of perspectives from three individuals with very preterm birth experience.

Main Results:

  • Extended follow-up beyond two years is crucial.
  • Increased acknowledgment of prematurity in educational settings is needed.
  • Adult services require enhanced awareness of the long-term consequences of preterm birth.

Conclusions:

  • Incorporating the voices and perspectives of those with preterm birth experience is essential for relevant research.
  • Recognizing the lifelong impact of prematurity is vital for improved support and services.

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