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A Novel Method for Involving Women of Color at High Risk for Preterm Birth in Research Priority Setting
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Parents' information needs during the first year at home with their very premature born child; a qualitative study

Monique Flierman1,2, Daniel Bossen2, Rosa de Boer2

  • 1Department of Rehabilitation Medicine, Amsterdam University Medical Center, Amsterdam, the Netherlands.

PEC Innovation
|March 18, 2024
PubMed

Insights

Parents of very preterm infants need tailored information and support to build confidence in infant care. Healthcare professionals are key to meeting these evolving needs during the first year at home.

Area of Science:

  • Neonatal care
  • Parental adaptation
  • Child development

Background:

  • The first year at home with a very preterm (VP) infant presents unique challenges for parents.
  • Parental self-efficacy and confidence are crucial for successful infant care and development.
  • Existing information sources may not adequately address the specific needs of parents of VP infants.

Purpose of the Study:

  • To explore and understand the information needs of parents during the first year post-discharge with their very preterm infant.
  • To identify key themes and patterns in parental information requirements.
  • To inform the development of supportive resources for these families.

Main Methods:

  • Semi-structured interviews were conducted with parents of VP infants enrolled in a responsive parenting intervention.
  • Interviews were audio-recorded, transcribed verbatim, and analyzed using inductive thematic analysis by two independent coders.
  • Focus on understanding the parents' perspective and lived experiences.

Main Results:

  • Parents reported diverse and evolving information needs throughout their infant's first year.
  • Three primary themes emerged: understanding and coping, assuming full responsibility, and skill acquisition for self-care.
  • External sources like the internet were insufficient; parents prioritized healthcare professionals for tailored guidance and reassurance.

Conclusions:

  • Parents of VP infants require ongoing, specific information to foster confidence in their caregiving abilities and decision-making autonomy.
  • Addressing these needs is vital for supporting parental self-efficacy in the critical first year after preterm birth.
  • Healthcare providers and eHealth developers can leverage these findings to create more effective support systems.
Abstract

Keywords:
Discharge to homeInformation needsPost-discharge interventionVery preterm infantparents' experiences

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