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Health-related quality of life and everyday life for children with right ventricular outflow tract anomalies. Perspectives from children and parents.

Svensson, Birgitta LU (2023) In Lund University,Faculty of Medicine Doctoral Dissertation Series
Abstract
Background: Children with right ventricular outflow tract (RVOT) anomalies
typically undergo surgical repair during their first months of life and thereafter they will need one or more reoperations through their life.
Aims: The overall aim was to describe health-related quality of life (HRQoL) for
children with congenital heart disease (CHD) with a special focus on children with
RVOT anomalies and to explore children’s and their parents’ experiences of
everyday life during assessment that could result in a new heart surgery.
Methods: Two quantitative studies with HRQoL assessment for 337 children with
CHD and 97 children with RVOT anomalies were performed. Another two
qualitative interview studies were... (More)
Background: Children with right ventricular outflow tract (RVOT) anomalies
typically undergo surgical repair during their first months of life and thereafter they will need one or more reoperations through their life.
Aims: The overall aim was to describe health-related quality of life (HRQoL) for
children with congenital heart disease (CHD) with a special focus on children with
RVOT anomalies and to explore children’s and their parents’ experiences of
everyday life during assessment that could result in a new heart surgery.
Methods: Two quantitative studies with HRQoL assessment for 337 children with
CHD and 97 children with RVOT anomalies were performed. Another two
qualitative interview studies were conducted, in which nine children with RVOT
anomalies and their parents were interviewed at three time points (at start of the
preoperative assessment, at the assessment decision and around 11 months after the decision).
Results: Children with three or more surgeries had lower HRQoL than children with fewer heart surgeries. Children with RVOT anomalies rated their lowest HRQoL for cognitive function, as did their parents. The agreement for HRQoL between children with RVOT anomalies and their parents was strong for 13 of 22 items. The thematic analysis of the interviews with children resulted in three themes and eight subthemes: Me and my heart disease explores the children’s experiences of their heart disease; Being me explores their sense of self; Being placed in someone else’s hands describes how the assessment was a safety net for the child, at least until the decision for heart surgery. The interviews with parents resulted in five themes: The heart surgery keeps my child alive illuminates’ parents’ experiences related to the assessment: Everyday struggles illuminates the struggles parents had to face on behalf of their child in everyday life; Unconditional love, Trust in life and Togetherness illuminates the ways in which the parents gained inner strength in their everyday lives.
Conclusion: By inviting both the child and their parents to participate in the child’s care, individually tailored support can be identified and given. (Less)
Please use this url to cite or link to this publication:
author
supervisor
opponent
  • Professor of Pediatric Nursing Enskär, Karin, Department of Women´s and Children´s health, Pediatric oncological and neurological research, Uppsala University
organization
alternative title
Hälsorelaterad livskvalitet och vardagsliv för barn med höger kammares utflödesobstruktion : Perspektiv från barn och föräldrar
publishing date
type
Thesis
publication status
published
subject
keywords
HRQoL, Everyday life, Children, Parents, Congenital heart disease, RVOT anomalies, Heart surgery, Thematic analysis
in
Lund University,Faculty of Medicine Doctoral Dissertation Series
issue
2023:108
pages
66 pages
publisher
Lund University, Faculty of Medicine
defense location
Belfragesalen, BMC D15, Klinikgatan 32 i Lund
defense date
2023-09-22 09:00:00
ISSN
1652-8220
ISBN
978-91-8021-449-0
language
English
LU publication?
yes
additional info
Dis
id
337117f5-390d-4d29-bf9d-d5342e4823d5
date added to LUP
2023-08-14 10:25:00
date last changed
2023-08-21 12:57:43
@phdthesis{337117f5-390d-4d29-bf9d-d5342e4823d5,
  abstract     = {{Background: Children with right ventricular outflow tract (RVOT) anomalies<br/>typically undergo surgical repair during their first months of life and thereafter they will need one or more reoperations through their life.<br/>Aims: The overall aim was to describe health-related quality of life (HRQoL) for<br/>children with congenital heart disease (CHD) with a special focus on children with<br/>RVOT anomalies and to explore children’s and their parents’ experiences of<br/>everyday life during assessment that could result in a new heart surgery.<br/>Methods: Two quantitative studies with HRQoL assessment for 337 children with<br/>CHD and 97 children with RVOT anomalies were performed. Another two<br/>qualitative interview studies were conducted, in which nine children with RVOT<br/>anomalies and their parents were interviewed at three time points (at start of the<br/>preoperative assessment, at the assessment decision and around 11 months after the decision).<br/>Results: Children with three or more surgeries had lower HRQoL than children with fewer heart surgeries. Children with RVOT anomalies rated their lowest HRQoL for cognitive function, as did their parents. The agreement for HRQoL between children with RVOT anomalies and their parents was strong for 13 of 22 items. The thematic analysis of the interviews with children resulted in three themes and eight subthemes: Me and my heart disease explores the children’s experiences of their heart disease; Being me explores their sense of self; Being placed in someone else’s hands describes how the assessment was a safety net for the child, at least until the decision for heart surgery. The interviews with parents resulted in five themes: The heart surgery keeps my child alive illuminates’ parents’ experiences related to the assessment: Everyday struggles illuminates the struggles parents had to face on behalf of their child in everyday life; Unconditional love, Trust in life and Togetherness illuminates the ways in which the parents gained inner strength in their everyday lives.<br/>Conclusion: By inviting both the child and their parents to participate in the child’s care, individually tailored support can be identified and given.}},
  author       = {{Svensson, Birgitta}},
  isbn         = {{978-91-8021-449-0}},
  issn         = {{1652-8220}},
  keywords     = {{HRQoL; Everyday life; Children; Parents; Congenital heart disease; RVOT anomalies; Heart surgery; Thematic analysis}},
  language     = {{eng}},
  number       = {{2023:108}},
  publisher    = {{Lund University, Faculty of Medicine}},
  school       = {{Lund University}},
  series       = {{Lund University,Faculty of Medicine Doctoral Dissertation Series}},
  title        = {{Health-related quality of life and everyday life for children with right ventricular outflow tract anomalies. Perspectives from children and parents.}},
  url          = {{https://lup.lub.lu.se/search/files/154785466/Health_related_quality_of_life_and_everyday_life_for_children_with_right_ventricular_ouflow_tract_anomalies_Perspectives_from_children_and_parents.pdf}},
  year         = {{2023}},
}