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

Federica Dellafi ore*, Roberta Domanico, Serena Francesca Flocco, Francesco Pittella, Gianluca Conte, Arianna Magon, Massimo Chessa and Rosario Caruso

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 7 articles met all the inclusion criteria. In accordance with the 6 phases suggest by Noblit and Hare, the papers were analyzed, discussed and a qualitative meta-synthesis was performed. The meta-synthesis results were 4 main  themes, exploring 4 main contradictions that characterize the life experiences of CHD adolescents’ parents: “fear and uncertainty of the future versus positive coping strategies”; “parents hyper- responsibility 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.

Keywords: Congenital heart disease; Transition; Adolescents; Parents; Life experience

Published on: May 17, 2017 Pages: 31-37

Full Text PDF Full Text HTML DOI: 10.17352/anpc.000022
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