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Being parents of extremely preterm children, from a long-term perspective: A qualitative study of parents' experiences
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Perinatal, Neonatal and Pediatric Cardiology Research.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Perinatal, Neonatal and Pediatric Cardiology Research.ORCID iD: 0000-0002-2953-5485
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Perinatal, Neonatal and Pediatric Cardiology Research.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Perinatal, Neonatal and Pediatric Cardiology Research.ORCID iD: 0000-0001-5955-1278
2023 (English)In: Early Human Development, ISSN 0378-3782, E-ISSN 1872-6232, Vol. 183, article id 105819Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
Elsevier, 2023. Vol. 183, article id 105819
Keywords [en]
Adults born extremely preterm, Extremely preterm children, Neonatal intensive care, Parents' experiences, Parents' perspectives, Qualitative research
National Category
Pediatrics
Identifiers
URN: urn:nbn:se:uu:diva-507570DOI: 10.1016/j.earlhumdev.2023.105819ISI: 001034532800001PubMedID: 37393662OAI: oai:DiVA.org:uu-507570DiVA, id: diva2:1781381
Funder
Gillbergska stiftelsenSolstickan FoundationAvailable from: 2023-07-08 Created: 2023-07-08 Last updated: 2023-08-18Bibliographically approved

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Starke, VeronicaDiderholm, BarbroHeyman, MariaThernström Blomqvist, Ylva

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