Experiences of mothers of infants with congenital heart disease before, during, and after complex cardiac surgery.
OBJECTIVE
Experiences of mothers of infants undergoing complex heart surgery were explored to build evidence-based family-centered interventions.


BACKGROUND
Congenital heart disease is the most frequent birth defect in the United States and is common worldwide.


METHODS
Eight mothers recalled through journal entries their experiences of the days before, during, and after their infant's surgery and shared advice for other mothers. Colaizzi's phenomenological method was utilized for data analysis. A validation survey of seven additional mothers from a support group occurred via email.


RESULTS
Six themes were identified and validated: Feeling Intense Fluctuating Emotion; Navigating the Medical World; Dealing with the Unknown; Facing the Possibility of My Baby Dying, Finding Meaning and Spiritual Connection, and the umbrella theme of Mothering Through It All.


CONCLUSIONS
Through a clearer understanding of experiences as described by mothers, health-care providers may gain insight as to how to better support mothers of infants undergoing heart surgery.
Mary Bridge Children's Hospital, Cardiac Surgery Program, 311 South L Street, Tacoma, WA 98415-0299, USA. Electronic address: kayla.harvey@multicare.org.
Kayla A
KA
Harvey
Andrea
A
Kovalesky
Ronald K
RK
Woods
Lori A
LA
Loan
D001294:Attitude to Health; D006348:Cardiac Surgical Procedures / Q000451:nursing / Q000523:psychology*; D003625:Data Collection; D004644:Emotions; D005260:Female; D006330:Heart Defects, Congenital / Q000601:surgery*; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D009035:Mothers / Q000523:psychology*; D011368:Professional-Family Relations; D012657:Self-Help Groups; D014481:United States
Congenital heart defect; Journaling; Mother; Pediatric heart surgery; Qualitative