Parents’ Journeys of Mastery and Knowledge Construction After Their Infant’s First Stage of Surgery for Complex Congenital Heart Disease

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 centered 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 analyzed. Descriptive statistics were used to characterize the sample and non-parametric repeated measures analysis of variance was used to analyze 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 contextualized 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 = .011), T2 (p = .018) and T3 (p = .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 individualized 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.

What’s New

• Parents learning was dynamic and transformational, learning opportunities overlapped transitional phases of their infant’s journey, but successful learning and acquisition of knowledge was also dependent upon the parents’ ability to absorb, integrate and adjust at any given time.

• The transition from hospital to home and traversing the physical boundary of leaving the hospital for the first time with their infant (liminal phase), was loaded with emotionally traumatic experiences that could not be separated from the transition that was being explored within this study.

• Adjusting to the new situation, developing confidence over time, and becoming comfortable as they mastered new skills, demonstrated that some of these parents could pass through that liminal space to mastery of a new normal (post-liminal phase), which encompassed competence, integration, and comfort.

KEYWORDS:

• Heart defects
• congenital
• infants
• parents
• discharge
• confidence
• knowledge

Acknowledgments

Suzie Hutchinson, CEO, and Isabelle Baumber, Parent Representative, Little Hearts Matter; Amanda Daniels, Advanced Nurse Practitioner, Birmingham Children’s Hospital, and David Barron, Chief Clinical Investigator, Consultant Cardiac Surgeon, Birmingham Children’s Hospital; Dr Jo Wray, Institute of Child Health, London contributed as members of the External Advisory Group and Research Team.

Mel Rooney, Needa Mohammed and Lucy Cooper, Research Nurses, Wellcome Trust Clinical Research Facility, Birmingham Children’s Hospital, recruited families into the study and gathered baseline data.

Coventry University was the sponsor for the study (2012-2016). Professor Gill Furze and Dr Tim Kilner, Coventry University PhD Supervisory Team 2011 until 2013, contributed to the design of the feasibility study and preparation for ethics approval. Dr Charlotte Hilton became Director of Studies in 2013-2016, Dr Martin Bollard and Dr Penny Upton joined the supervisory team in 2015-2016.

The team acknowledge the support of Heart Research UK [grant number RG2620/12/14] and the NIHR through the Comprehensive Clinical Research Network as the Feasibility Study has been adopted to the NIHR Portfolio.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The work was supported by the Heart Research UK [RG2620/12/14].