Highlights
- •Parents need to feel safe in the experience of living with a child with a congenital heart defect (CHD).
- •Parents need to receive continuous, clear and accurate information with regards to several aspects of CHD.
- •Parents need support of the public health care system and social services.
- •Parents need to establish effective relationships with healthcare professionals and trust them.
- •Pediatric nurse's presence is essential in pediatric outpatient clinics to care for children with CHD.
Abstract
Purpose
To explore parental needs related to their experiences of living with a child with
congenital heart defect (CHD) since the diagnosis.
Design and methods
An interpretative qualitative study developed with nine parents of children between
the ages of five months and 11 years diagnosed with CHD. Interviews were conducted
at an ambulatory pediatric cardiology centre. Data were analyzed using inductive thematic
analysis. The consolidated criteria for reporting qualitative research (COREQ) was
followed for quality reporting. This research was approved by a research committee.
Results
One central theme emerged, namely ‘A desire to feel safe in dealing with the demands
of CHD,’ along with two main themes. The first is ‘Looking for effective relations
with healthcare professionals and health care systems’ which encompasses three types
of need: (1) need for continuous, clear and accurate information; (2) need for resolution
and the support of services such as the public health care system and social services;
(3) need for trust in health care professionals. The second theme is ‘Looking for
balance in daily life’ with two main needs: (1) maintain family functioning and (2)
learn to deal with the child and CHD.
Conclusion
The main parental needs are related to their interactions with healthcare professionals
and healthcare systems, highlighted by a need for information and trust relationships
to feel safe in their daily lives.
Practice implications
Our results imply rethinking the nurse presence in ambulatory care, implementation
of a family-centered care approach and addressing the diverse and multifaceted experiences
and needs of parents and children with CHD in different health care contexts.
Keywords
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Article info
Publication history
Published online: December 08, 2021
Accepted:
November 26,
2021
Received in revised form:
November 26,
2021
Received:
June 13,
2021
Identification
Copyright
© 2021 Elsevier Inc. All rights reserved.
