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Implantation of Total Artificial Heart in Congenital Heart Disease
Published on: July 18, 2014
Parental emotional and hands-on work-Experiences of parents with a newborn undergoing congenital heart surgery: A
Mirjam Thomi1,2, Jean-Pierre Pfammatter2, Elisabeth Spichiger3,4
1University Children's Hospital, Inselspital, Bern University Hospital, Bern, Switzerland.
Insights
Parents of newborns with congenital heart disease (CHD) face demanding emotional and practical work navigating the hospital system. Understanding their experiences is key for compassionate, family-centered care.
Area of Science:
- Pediatric cardiology
- Neonatal care
- Qualitative research
Background:
- Congenital heart disease (CHD) is a significant concern in newborns.
- Parental experiences during a child's critical illness are complex and impactful.
- Limited research explores the dual parental perspective from diagnosis through post-surgery recovery.
Purpose of the Study:
- To explore mothers' and fathers' experiences with their newborn's congenital heart disease (CHD).
- To understand parental journey from prenatal/postnatal diagnosis to hospital discharge after heart surgery.
- To identify key challenges and themes in parental caregiving during critical neonatal periods.
Main Methods:
- Qualitative research using a constructivist paradigm.
- Semistructured joint couple interviews with nine families.
- Inductive thematic analysis of interview data.
Main Results:
- Parents engaged in demanding emotional and hands-on "parental work."
- Navigating an unfamiliar hospital environment from diagnosis to discharge was a major theme.
- Parents managed complex interactions with healthcare professionals, family teamwork, and social support.
Conclusions:
- Healthcare professionals must build trust and provide consistent information to parents.
- Acknowledging and appreciating parents' intensive caregiving efforts is crucial.
- Awareness of parental experiences enhances compassionate, family-centered care for infants with CHD.
Purpose:
To explore both mothers' and fathers' experiences from prenatal or postnatal diagnosis of their newborn's congenital heart disease (CHD) to the first discharge after heart surgery in a Swiss university children's hospital.
Design And Method:
A qualitative research approach, based on a constructivist paradigm, was applied to explore participants' experiences and perceptions. Parents of nine children with moderate to severe CHD participated in semistructured joint couple interviews. Data were analyzed inductively via an iterative process, following the steps of thematic analysis.
Results:
Between the child's CHD diagnosis and hospital discharge after neonatal cardiac surgery, the overarching theme for parents was being confronted with demanding emotional and hands-on work. This parental work included four themes with subthemes: Parents had to tackle a route through an unknown hospital world from receiving the CHD diagnosis and experiencing delivery to attending to their child in the pediatric intensive care unit and during surgery, as well as during the transfer to and the stay on the pediatric cardiac unit. They experienced an at times challenging interplay with health care professionals, performed teamwork as the nuclear family and managed concerned relatives and friends.
Practice Implications:
Health care professionals should establish trustful relationships with parents, while accompanying families continuously, providing consistent, straightforward information, and expressing appreciation for the parents' exceptional emotional and hands-on work. Health care professionals' awareness of parent's experiences is vital to compassionate family-centered care.
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