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“I Dread the Heart Surgery but it Keeps My Child Alive”—Experiences of Parents of Children with Right Ventricular Outflow Tract Anomalies during the Assessment for Cardiac Reoperation

Svensson, Birgitta LU ; Liuba, Petru LU ; Wennick, Anne LU and Berghammer, Malin LU (2023) In Congenital Heart Disease 18(3). p.349-359
Abstract
Background: Parents of children with complex right ventricular outflow tract (RVOT) anomalies are con-fronted with their child’s need for heart surgery early in life and repeated reoperations later on. Preoperative assessment needs to be performed whenever an indication for reoperation is suspected. The aim was to illuminate the experiences of parents of children diagnosed with RVOT anomalies, in particular, how they experience their child’s heart disease and everyday life during the assessment and after the decision on whether to perform a reo-peration. Method: Individual interviews (n = 27) were conducted with nine parents on three occasions between 2014 and 2016 and analyzed using reflexive thematic analysis. Results: The analysis... (More)
Background: Parents of children with complex right ventricular outflow tract (RVOT) anomalies are con-fronted with their child’s need for heart surgery early in life and repeated reoperations later on. Preoperative assessment needs to be performed whenever an indication for reoperation is suspected. The aim was to illuminate the experiences of parents of children diagnosed with RVOT anomalies, in particular, how they experience their child’s heart disease and everyday life during the assessment and after the decision on whether to perform a reo-peration. Method: Individual interviews (n = 27) were conducted with nine parents on three occasions between 2014 and 2016 and analyzed using reflexive thematic analysis. Results: The analysis resulted in the following five main coexisting themes: The heart surgery keeps my child alive illuminates parents’ experiences during and after the assessment and emphasizes that heart surgery, although dreaded, is central for their child’s survival; Everyday struggles illuminates the different struggles parents had to face to ensure that their child would be in the best possible condition; the remaining three themes, Unconditional love, Trust in life, and Togetherness, illuminate the ways in which the parents gained inner strength and confidence in their everyday lives. Conclusion: Although the parents were grateful for the assessment and had learned to navigate among the fears it aroused, they experi-enced several distressing situations during the assessment process that should be addressed. By inviting both the parents and their child to participate in the child’s care, individualized support can take into account the needs of both parents and child. (Less)
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author
; ; and
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
adolescent, article, child, child care, clinical article, clinical assessment, controlled study, family stress, fear, female, health care personnel, heart right ventricle outflow tract obstruction, heart surgery, human, male, personal experience, reoperation, school child, semi structured interview, thematic analysis, trust
in
Congenital Heart Disease
volume
18
issue
3
pages
349 - 359
publisher
Wiley-Blackwell
external identifiers
  • scopus:85162622676
ISSN
1747-0803
DOI
10.32604/chd.2023.028391
language
English
LU publication?
yes
id
1e86b646-dac2-4c0d-b273-3d6402b15803
date added to LUP
2023-08-14 11:43:54
date last changed
2023-08-15 04:02:35
@article{1e86b646-dac2-4c0d-b273-3d6402b15803,
  abstract     = {{Background: Parents of children with complex right ventricular outflow tract (RVOT) anomalies are con-fronted with their child’s need for heart surgery early in life and repeated reoperations later on. Preoperative assessment needs to be performed whenever an indication for reoperation is suspected. The aim was to illuminate the experiences of parents of children diagnosed with RVOT anomalies, in particular, how they experience their child’s heart disease and everyday life during the assessment and after the decision on whether to perform a reo-peration. Method: Individual interviews (n = 27) were conducted with nine parents on three occasions between 2014 and 2016 and analyzed using reflexive thematic analysis. Results: The analysis resulted in the following five main coexisting themes: The heart surgery keeps my child alive illuminates parents’ experiences during and after the assessment and emphasizes that heart surgery, although dreaded, is central for their child’s survival; Everyday struggles illuminates the different struggles parents had to face to ensure that their child would be in the best possible condition; the remaining three themes, Unconditional love, Trust in life, and Togetherness, illuminate the ways in which the parents gained inner strength and confidence in their everyday lives. Conclusion: Although the parents were grateful for the assessment and had learned to navigate among the fears it aroused, they experi-enced several distressing situations during the assessment process that should be addressed. By inviting both the parents and their child to participate in the child’s care, individualized support can take into account the needs of both parents and child.}},
  author       = {{Svensson, Birgitta and Liuba, Petru and Wennick, Anne and Berghammer, Malin}},
  issn         = {{1747-0803}},
  keywords     = {{adolescent; article; child; child care; clinical article; clinical assessment; controlled study; family stress; fear; female; health care personnel; heart right ventricle outflow tract obstruction; heart surgery; human; male; personal experience; reoperation; school child; semi structured interview; thematic analysis; trust}},
  language     = {{eng}},
  number       = {{3}},
  pages        = {{349--359}},
  publisher    = {{Wiley-Blackwell}},
  series       = {{Congenital Heart Disease}},
  title        = {{“I Dread the Heart Surgery but it Keeps My Child Alive”—Experiences of Parents of Children with Right Ventricular Outflow Tract Anomalies during the Assessment for Cardiac Reoperation}},
  url          = {{http://dx.doi.org/10.32604/chd.2023.028391}},
  doi          = {{10.32604/chd.2023.028391}},
  volume       = {{18}},
  year         = {{2023}},
}