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Abstract

Background

Advances in care have increased survival and improved outcomes of infants with complex and chronic diseases. These medically fragile infants require long-term hospitalization and depend on technology for survival. Parents of these infants experience stress and difficulties adapting to their parental role.

Purpose

To present an account of parental experiences as they provided care for their hospitalized medically fragile infant.

Methods

This study was part of a larger constructivist grounded theory study to provide a holistic understanding of the processes of care for medically fragile infants. For this sub-study, 21 parents of hospitalized medically fragile infants were recruited from a pediatric hospital in Western Canada. Parents participated in face-to-face, semi-structured interviews, which were transcribed and analyzed using initial and focused coding.

Results

Parents of hospitalized medically fragile infants grieved the loss of parenting a healthy infant, and they experienced multiple stressors. Parents utilized various coping strategies to manage their grief and stressors. Some parents were unable to cope, which exacted a heavy toll on their physical and mental health. Parents recommended psychological support, access to physical activity, primary nursing, and health system navigators.

Conclusions

Parental recommendations can inform the design of interventions for parents of hospitalized medically fragile infants.

Keywords

Pediatric nursing medically fragile infant medically complex infant hospitalization parental experiences stress coping

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

Abstract

Background

Purpose

Methods

Results

Conclusions

Keywords

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References

Supplementary Material