The life experience of parents of Congenital Heart Disease adolescents: A meta-synthesis

Abstract

Introduction: Congenital Heart Diseases (CHD) do not preclude the possibility to become adult due to the different innovations in medical and surgical treatments. The transition from childhood to adulthood is a complex process in the life of CHD adolescents, considering the consequences of their diseases and the need to be adherent with their follow-up indications. In this process, parents play an important role, being a landmark for their children, but the experiences of CHD adolescents' parents are little studied and the literature about their life experiences appears fragmented. Knowledge of life experience of CHD adolescents' parents is important to address a tailored and effi cient health-care delivery for the whole family. Therefore, the aim of this study is to synthesize qualitative papers of life experience of CHD adolescents' parents. Methods:A meta-synthesis study using Noblit and Hare's interpretative meta-ethnography approach was conducted. Databases searched included PubMed, CINAHL, PsycINFO and Google Schoolar and keywords used are "Congenital heart disease", "Parents", "Adolescents" and "life experience". The search process was performed in accordance with the PRISMA guidelines and only the qualitative papers in the last 20 years were included. Studies resulted by search process were critically appraised using the Critical Appraisal Skills Programme qualitative research appraisal tool. Results:The search yielded 386 potentially relevant studies for screening, and only six articles met all the inclusion criteria. In accordance with the seven phases suggested by Noblit and Hare, the papers were analyzed, discussed and a qualitative meta-synthesis was performed. The meta-synthesis results showed four main themes, exploring also four main contradictions that characterize the life experiences of CHD adolescents' parents: "fear and uncertainty of the future versus positive coping strategies"; "parents hyperresponsibility and overprotection versus adolescents' independence desire"; "desire to give support, but not to be supported"; "normality desire versus awareness to live with particular conditions". Conclusions:The role of the CHD adolescents' parents is diffi cult and they experience some contradictions. This study explore their life experiences in a preliminary way, but further analysis and studies are needed.

Chronic Paradoxes: A Systematic Review of Qualitative Family Perspectives on Living With Congenital Heart Defects

“… 5. The review by Dellafiore et al (2017; building on six articles whereof only four were specifically focused on CHD) also found contradictions to be a theme in the experiences of parents of adolescents with CHD. …”

Psychological Well-Being in Adult Patients Suffering From Congenital Heart Disease: A Salutogenic Approach From a Chilean Experience

“…One of the main concerns for parents of children with CHD is about the future of their children. 1 They wonder whether their children will have a "normal" life and what will be the emotional consequences of having a different childhood from those of other children due to medical treatment and surgical interventions they have undergone since birth. These concerns are also present in adolescents and young adults with CHD, 2 who express the need to enjoy a "normal" life despite their condition.…”

“…Currently, this population has a good prognosis, thus increasing the number of adults living with this health condition. One of the main concerns for parents of children with CHD is about the future of their children 1. They wonder whether their children will have a “normal” life and what will be the emotional consequences of having a different childhood from those of other children due to medical treatment and surgical interventions they have undergone since birth.…”