Defining a new normal: A qualitative exploration of the parent experience during the single ventricle congenital heart disease interstage period

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for examination of the transition following the second palliative heart surgery, when the home monitoring program is withdrawn.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.

Parenting a Child with a Functionally Univentricular Heart: Mothers’ Experiences of Role and Identity

“…The second theme depicts mothers' struggle to manage additional, competing roles that created fear and exhaustion. The roles were similar to those described in previous research, including protector (Lumsden et al, 2020;Rempel & Harrison, 2007), promoting normality (Lumsden et al, 2020) and a dilemma between being mother and nurse (Elliott et al, 2021;Gaskin, 2018;Harvey et al, 2013), suggesting similarities with other CHD types. This study was the first to describe all four roles together and to discuss the dilemma between normality and protecting the child.…”

“…Qualitative research has not explored identity among parents of CYP with CHD but has offered some consideration of parental roles relative to wider experiences. For example, distress has been associated with feeling stripped of parental roles during hospitalisation (Simeone et al, 2018) or as a father (Gower et al, 2017), or struggling to be both parent and nurse following hospital discharge (Elliott et al, 2021;Gaskin, 2018;Harvey et al, 2013). Two studies considered parental role in more detail.…”

Experiences and insights from partners of individuals with single-ventricle CHD: a pilot qualitative research study

“…Namely, the role of uncertainty and balancing of roles. 20 Given the differing relationships partners and parents have, these themes may be more pervasive throughout the lifelong journey of families impacted by single-ventricle CHD.…”

Post-discharge nutritional management for patients with coronary heart disease and frailty: a qualitative study

“…Meleis’ transition theory has mainly been applied to nursing education transitions [ 9 ], caregiver role transitions [ 10 ], nurse position changes [ 11 ] and other fields. Elliott M [ 12 ] et al conducted qualitative interviews with parents of children with precardiac disease and used Meleis’ transition theory framework to guide the formulation of interview questions and analysis of the results with the goal of obtaining insights into caregivers' experiences of transition and providing theoretical support for interventions that can be implemented by patients themselves, caregivers, and society. Eyimaya [ 10 ] et al explored the characteristics of transition among menopausal women and used Meleis’ transition theory as a framework.…”