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Parental Experiences Caring for Their Hospitalized Medically Fragile Infants: A Description of Grief, Stress, and

Lyndsay MacKay1, Karen Benzies1,2, Chantelle Barnard3

  • 1Faculty of Nursing, University of Calgary, Calgary, Alberta, Canada.

The Canadian Journal of Nursing Research = Revue Canadienne De Recherche En Sciences Infirmieres
|August 28, 2020
PubMed

Insights

Parents of medically fragile infants experience significant stress and grief. They recommend psychological support and health system navigators to improve care and coping.

Area of Science:

  • Pediatric Nursing
  • Family-Centered Care
  • Qualitative Research

Background:

  • Increased survival rates for infants with complex diseases necessitate long-term hospitalization.
  • Medically fragile infants rely on technology, posing unique challenges for families.
  • Parents face significant stress and role adaptation difficulties when caring for hospitalized infants.

Purpose of the Study:

  • To explore and understand the lived experiences of parents providing care for their hospitalized, medically fragile infant.
  • To identify the challenges and coping mechanisms employed by parents in this unique caregiving situation.

Main Methods:

  • A qualitative, constructivist grounded theory approach was used.
  • 21 parents of hospitalized medically fragile infants were interviewed.
  • Semi-structured interviews were transcribed and analyzed using coding techniques.

Main Results:

  • Parents experienced grief over the loss of a healthy infant and faced numerous stressors.
  • Coping strategies varied, with some parents experiencing significant physical and mental health impacts.
  • Key recommendations included psychological support, physical activity access, primary nursing, and health system navigators.

Conclusions:

  • Parental insights are crucial for developing effective interventions.
  • Findings can inform healthcare providers and policymakers to better support families of medically fragile infants.
Abstract

Keywords:
Pediatric nursingcopinghospitalizationmedically complex infantmedically fragile infantparental experiencesstress

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