Parenting After Infant Congenital Heart Defect Diagnosis

The purpose of this research study is to learn about parents' experiences following diagnosis of a fetal/neonatal Congenital Heart Defect (CHD). Nurses, physicians, and other health-care clinicians will benefit from an improved understanding of what the diagnosis means to parents and what they expect concerning the infant, being a parent, and caregiving tasks and responsibilities. The investigators expect that the knowledge gained will increase clinicians' ability to respond to parents' needs.

Study Overview

• Status: Completed
• Conditions: Congenital Heart Disease

Detailed Description

Parental mental health status is linked to the development and quality of caregiving, as well as physiological and psychosocial outcomes for the infant/child with a heart defect.

This is an evolving population of parents with most challenged prenatally with a fetal diagnosis and later as caregivers for medically complex infants. Parents with pre- and postnatally diagnosed infants are at risk for sub-optimal mental health. Parents' experiences and needs differ by timing of diagnosis.

Several gaps in the literature exist. First, advances in technology raise questions about how becoming a caregiver is experienced considering the timing of the diagnosis. Second, little is known about how the timing of the diagnosis could influence parents' mental health status and caregiving after diagnosis. Finally, more study is needed to identify the type, timing and duration of intervention to support these parents as caregivers and optimize their infants' health.

Data collected for this study included demographic and health information (from parents and infant health records), measures of distress (symptoms of depression, anxiety and trauma), and interviews. Semi-structured interviews were conducted with parents in person in the hospital and home settings. Interviews with each couple in the prenatally diagnosed group were conducted once during the third trimester of pregnancy and once within 12 weeks after birth. Interviews with each couple or mother in the postnatally diagnosed group were conducted once within 12 weeks after birth. Interviews lasted 1-3 hours, were audio-recorded and transcribed verbatim for analysis. Field notes were also written and audio recorded for use in analysis.

Directed content analysis has been used to describe parents' experiences and caregiving motivations in relation to parental distress and severity of infant illness. Analysis of data is ongoing. Additional analyses are expected to further improve knowledge on the differing needs of parents of pre- and postnatally diagnosed infants, as well as parents' experiences and caregiving motivations in the context of discharge from tertiary care.

• Study Type: Observational
• Enrollment (Actual): 23

Contacts and Locations

Study Locations

• United States
  • Wisconsin
    • Madison, Wisconsin, United States, 53792
      • University of Wisconsin Madison
    • Milwaukee, Wisconsin, United States, 53226
      • Children's Hospital of Wisconsin

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: No older than 2 months (Child)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

• Sampling Method: Non-Probability Sample

Study Population

In this year-long study, 12 to 16 families (mothers and fathers) will be recruited-6 to 8 of the families from the fetal diagnosis clinic at either Meriter Hospital or Children's Hospital of Wisconsin and 6 to 8 families whose infant is diagnosed soon after birth with a complex CHD at either Meriter Hospital or Children's Hospital of Wisconsin.

Description

Inclusion Criteria for Parents:

• at least 18 years old
• English speaking and reading
• not known to have a mental illness or cognitive deficit

Inclusion Criteria for Infant:

• prenatal or postnatal diagnosis of a complex CHD that requires surgical repair or palliation early in the infant's life (i.e., tetralogy of Fallot, atrial-ventricular canal, ventricular septal defect, pulmonary stenosis, tricuspid atresia, hypoplastic right or left heart, or other complex condition). Infants will not be excluded if they also have congenital syndromes or extra-cardiac defects.

Exclusion Criteria:

• no CHD diagnosis

Study Plan

How is the study designed?

Number of groups / cohorts

1

Cohorts and Interventions

Group / Cohort
Prenatal/Postpartum CHD Diagnosis; parent of a baby (prenatal or postpartum)who was recently found to have a heart defect.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Creation of a typology of perinatal internal working models of parenting in congenital heart disease.	Qualitative analysis of interviews.	1 year

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Parent outcomes	Impact of Event Scale - Stress Reactions Center for Epidemiologic Studies Depression Scale - Depression State-Trait Anxiety Inventory - Anxiety	1 year

Collaborators and Investigators

• Sponsor: Medical College of Wisconsin
• Collaborators: University of Wisconsin, Madison; University of Minnesota; Children's Hospital and Health System Foundation, Wisconsin
• Investigators: Principal Investigator: Karen Pridham, PhD, RN, University of Wisconsin, Madison; Principal Investigator: Anne C McKechnie, PhD, RN, University of Wisconsin, Madison

Study record dates

Study Major Dates

• Study Start (Actual): January 1, 2009
• Primary Completion (Actual): July 1, 2016
• Study Completion (Actual): July 1, 2016

Study Registration Dates

• First Submitted: December 28, 2011
• First Submitted That Met QC Criteria: December 30, 2011
• First Posted (Estimate): January 4, 2012

Study Record Updates

• Last Update Posted (Actual): October 25, 2019
• Last Update Submitted That Met QC Criteria: October 23, 2019
• Last Verified: October 1, 2019

More Information

Terms related to this study

• Keywords: parenting; prenatal chd diagnosis; postpartum chd diagnosis; internal working models
• Additional Relevant MeSH Terms: Cardiovascular Diseases; Congenital Abnormalities; Cardiovascular Abnormalities; Heart Diseases; Heart Defects, Congenital
• Other Study ID Numbers: CHW 08/160; GC 728 (Other Identifier: Medical College of Wisconsin)