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Challenges of parenting children born before 24 weeks of gestation

Pivodic, Aldina ; Hansson, Malin ; Löfqvist, Chatarina ; Sävman, Karin ; Elfvin, Anders ; Jacobson, Lena ; Dinkler, Lisa ; Hallberg, Boubou ; Ley, David LU and Morsing, Eva LU , et al. (2024) In Acta Paediatrica, International Journal of Paediatrics 113(11). p.2414-2422
Abstract

Aim: To assess experience of care, well-being of parents and children's development in a cohort of extremely premature infants born <24 weeks of gestation in Sweden from 2007 to 2018. Methods: A survey based on multiple questionnaires answered by 124/349 (35.5%) parents. Results: The median age of parents and children was 43 and 9 years, respectively; 74.2% were mothers. Parents expressed high healthcare satisfaction. Following discharge from neonatal care, the satisfaction with the infant's treatment, support from personnel and being respected as a parent significantly declined but remained high. The criteria for suspected developmental deviation according to the screening test early symptomatic syndromes eliciting... (More)

Aim: To assess experience of care, well-being of parents and children's development in a cohort of extremely premature infants born <24 weeks of gestation in Sweden from 2007 to 2018. Methods: A survey based on multiple questionnaires answered by 124/349 (35.5%) parents. Results: The median age of parents and children was 43 and 9 years, respectively; 74.2% were mothers. Parents expressed high healthcare satisfaction. Following discharge from neonatal care, the satisfaction with the infant's treatment, support from personnel and being respected as a parent significantly declined but remained high. The criteria for suspected developmental deviation according to the screening test early symptomatic syndromes eliciting neurodevelopmental clinical examinations-questionnaire was fulfilled by 84.3%, 55.6% had suspected avoidant restrictive food intake disorder and 47.9% had visual perception problems. Parents experienced severe fatigue (48.6%) despite strong social support and family self-efficacy. Economic support was provided to 30.6%, and 37.9% of children were enrolled in habilitation services. Conclusion: This study highlighted the substantial challenges faced by parents of infants born before 24 weeks of gestation, including decreased satisfaction post-discharge, fatigue and concerns about children's well-being. The findings underscore the need for comprehensive family-centred support and long-term multi-professional follow-up centres.

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organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
ARFID, children's development, ESSENCE-Q, extremely preterm, parents' well-being
in
Acta Paediatrica, International Journal of Paediatrics
volume
113
issue
11
pages
9 pages
publisher
Wiley-Blackwell
external identifiers
  • scopus:85198133220
  • pmid:38984707
ISSN
0803-5253
DOI
10.1111/apa.17350
language
English
LU publication?
yes
id
83f78a99-8999-449b-91b9-3d4b65e2dc8b
date added to LUP
2024-11-28 12:40:16
date last changed
2025-06-27 07:00:39
@article{83f78a99-8999-449b-91b9-3d4b65e2dc8b,
  abstract     = {{<p>Aim: To assess experience of care, well-being of parents and children's development in a cohort of extremely premature infants born &lt;24 weeks of gestation in Sweden from 2007 to 2018. Methods: A survey based on multiple questionnaires answered by 124/349 (35.5%) parents. Results: The median age of parents and children was 43 and 9 years, respectively; 74.2% were mothers. Parents expressed high healthcare satisfaction. Following discharge from neonatal care, the satisfaction with the infant's treatment, support from personnel and being respected as a parent significantly declined but remained high. The criteria for suspected developmental deviation according to the screening test early symptomatic syndromes eliciting neurodevelopmental clinical examinations-questionnaire was fulfilled by 84.3%, 55.6% had suspected avoidant restrictive food intake disorder and 47.9% had visual perception problems. Parents experienced severe fatigue (48.6%) despite strong social support and family self-efficacy. Economic support was provided to 30.6%, and 37.9% of children were enrolled in habilitation services. Conclusion: This study highlighted the substantial challenges faced by parents of infants born before 24 weeks of gestation, including decreased satisfaction post-discharge, fatigue and concerns about children's well-being. The findings underscore the need for comprehensive family-centred support and long-term multi-professional follow-up centres.</p>}},
  author       = {{Pivodic, Aldina and Hansson, Malin and Löfqvist, Chatarina and Sävman, Karin and Elfvin, Anders and Jacobson, Lena and Dinkler, Lisa and Hallberg, Boubou and Ley, David and Morsing, Eva and Lundgren, Pia and Gyllén, Jenny and Pfeiffer-Mosesson, Carola and Hellström, Ann}},
  issn         = {{0803-5253}},
  keywords     = {{ARFID; children's development; ESSENCE-Q; extremely preterm; parents' well-being}},
  language     = {{eng}},
  number       = {{11}},
  pages        = {{2414--2422}},
  publisher    = {{Wiley-Blackwell}},
  series       = {{Acta Paediatrica, International Journal of Paediatrics}},
  title        = {{Challenges of parenting children born before 24 weeks of gestation}},
  url          = {{http://dx.doi.org/10.1111/apa.17350}},
  doi          = {{10.1111/apa.17350}},
  volume       = {{113}},
  year         = {{2024}},
}