Defining a new normal: A qualitative exploration of the parent experience during the single ventricle congenital heart disease interstage period
- 1 May 2021
- journal article
- research article
- Published by Wiley in Journal of Advanced Nursing
- Vol. 77 (5), 2437-2446
- https://doi.org/10.1111/jan.14785
Abstract
Aim To explore parents' experience of transition in the period between the palliative cardiac surgeries (i.e., the interstage period) of an infant with single ventricle congenital heart disease. Design We conducted an exploratory naturalistic inquiry using a qualitative descriptive approach. Methods A purposive sample of 11 parents of children with single ventricle disease was selected among families that participated in an interstage-period parental home monitoring program during the past 2 years. Interviews and field observations were conducted September-October 2019, and data were analyzed for themes. Analysis of data was inductive, although study questions and the interpretation of results were informed by Meleis' transition theory. Results Parents described the experience of transition in interstage as a striving for normality, a theme that was clustered in subthemes of home, self, and infant. Conclusion Parents' experiences of striving for normality indicated a need for more targeted efforts to address parents' psychosocial needs during the highly stressful interstage transition. Impact This research underscored the complexity of parents' psychosocial support needs on returning home after their child's first palliative surgery. The findings also suggest need for examination of the transition following the second palliative heart surgery, when the home monitoring program is withdrawn. Understanding parent needs will help guide healthcare teams in developing ways to support parents as they adjust to home, self, and child.Keywords
This publication has 27 references indexed in Scilit:
- Harnessing Teams and Technology to Improve Outcomes in Infants With Single VentricleCirculation: Cardiovascular Quality and Outcomes, 2016
- Parents' experiences of having a child undergoing congenital heart surgery: An emotional rollercoaster from shocking to blessingHeart & Lung, 2016
- Going home after infant cardiac surgery: a UK qualitative studyArchives of Disease in Childhood, 2016
- Parent distress reactions following a serious illness or injury in their child: a protocol paper for the take a breath cohort studyBMC Psychiatry, 2015
- Psychosocial Experiences of Parents of Infants With Hypoplastic Left Heart Syndrome in the PICUPediatric Critical Care Medicine, 2013
- Content analysis and thematic analysis: Implications for conducting a qualitative descriptive studyNursing & Health Sciences, 2013
- Using thematic analysis in psychologyQualitative Research in Psychology, 2006
- Combining Qualitative and Quantitative Sampling, Data Collection, and Analysis Techniques in Mixed-Method StudiesResearch in Nursing & Health, 2000
- But is it rigorous? Trustworthiness and authenticity in naturalistic evaluationNew Directions for Program Evaluation, 1986
- Physiologic Repair of Aortic Atresia–Hypoplastic Left Heart SyndromeNew England Journal of Medicine, 1983