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Parents’ journeys of mastery and knowledge construction after their infant’s first stage of surgery for complex congenital heart disease.

Gaskin, Kerry ORCID: https://orcid.org/0000-0002-1179-4921, Wray, J. and Barron, D. (2023) Parents’ journeys of mastery and knowledge construction after their infant’s first stage of surgery for complex congenital heart disease. Comprehensive Child and Adolescent Nursing. ISSN Print: 2469-4193 Electronic: 2469-4207

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Abstract

Background: A growing body of conceptual evidence over the last decade has increased our understanding of parents’ experiences of having an infant with complex congenital heart disease. These concepts include parents’ feelings of uncertainty, fear, excitement, and mastery. However, little is known about parents’ experiences, confidence, and knowledge acquisition during transition from hospital to home with their infant after the first stage of complex cardiac surgery. A theoretical framework to assess, plan and implement child and family centred care would assist children’s cardiac nurses responsible for parental education, discharge planning and coordination.
Aim: To explore parents’ experiences of the transition from hospital to home with their infant, following the first stage of cardiac surgery.
Design: A prospective mixed methods longitudinal design. Semi-structured interviews were undertaken, including administration of the Maternal Confidence Questionnaire at four timepoints: before discharge following stage one cardiac surgery (T0), 2 weeks’ post discharge (T1), 8 weeks’ post discharge (T2) and after stage two surgery (T3). Qualitative data were thematically analysed. Descriptive statistics were used to characterise the sample and non-parametric repeated measures analysis of variance was used to analyse changes over time in maternal confidence scores.
Results: Sixteen parents of 12 infants participated. Four ‘patterns of transition experience’ emerged, the fourth, ‘Mastery’, is discussed in this paper. Mastery can be contextualised in terms of the parents’ journeys of knowledge construction, gaining confidence and reflection. Learning was dynamic and transformational, but successful learning and acquisition of knowledge was also dependent upon the parents’ ability to absorb, integrate and adjust at any given time. Confidence at T0 was significantly lower than at T1 (p=0.011), T2 (p=0.018) and T3 (p=0.012). There were no significant differences between scores at T1, T2 and T3. Liminality, as a concept, described the between and betwixt time that parents experienced as they were preparing for discharge from hospital; excitement to be going home balanced with the fear of being alone and confidence in looking after their fragile infant.
Conclusion: Parents of infants with complex congenital heart disease obtain knowledge, confidence, and mastery dependent upon their transition experience and their personal journey through pre-liminal, liminal, and post-liminal phases of discharge from hospital to home. A conceptual framework ‘Parenting through Transitions – hospital to home’ emerged that could assist in structuring assessment of parents’ knowledge and support needs within a coordinated discharge process. Identifying individualised support would promote adaptation and adjustment during transition from the pre to post liminal phase, following their infant’s first stage of complex cardiac surgery.

Item Type: Article
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© 2023 The Author(s). Published with license by Taylor & Francis Group, LLC.
This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial License (http://creativecom
mons.org/licenses/by-nc/4.0/), which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited. The terms on which this article has been published allow the posting of the Accepted Manuscript in a repository
by the author(s) or with their consent.

Uncontrolled Discrete Keywords: Heart defects, congenital, Infants, Parents, Discharge, Confidence, Knowledge
Subjects: R Medicine > RJ Pediatrics
R Medicine > RT Nursing
Divisions: College of Health, Life and Environmental Sciences > School of Nursing and Midwifery
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Depositing User: Kerry Gaskin
Date Deposited: 13 Jul 2023 09:43
Last Modified: 14 Dec 2023 13:48
URI: https://eprints.worc.ac.uk/id/eprint/13061

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