Being parent of a child with congenital heart disease, what does it mean? A qualitative research

Nahid Dehghan Nayeri · Zahra Roddehghan · Parvin Mahmoodi

51 citations0/0 files storedBMC Psychology

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Family and Disability Support Research Congenital Heart Disease Studies Congenital heart defects research

Abstract

BACKGROUND: Childbirth is one of the invaluable human experiences and is associated with parental happiness. However, when a child is born with congenital heart disease, it creates emotional and mental distress. As a result, it changes the parents' response to their child birth. Exploring parenthood experiences add to the body of knowledge and reveal new perspectives. In order to make healthcare professionals able to support these children and their families, they should first understand the meaning of this phenomenon. This study aimed to explore the meaning of parenting a child with Congenital Heart Disease in Iran. METHODS: A qualitative study was adopted with a conventional content analysis approach and constant comparative analysis. Participants in this study were 17 parents, including parents of children with congenital heart disease who were selected by purposeful sampling method. Semi-structured interviews were used for data collection and continued to data saturation. Data were analyzed via MAXQDA 10 software. RESULTS: Four categories and twenty three subcategories emerged as meaning of parenting a child with Congenital Heart Disease. Categories include "Emotional breakdown", "The catastrophic burden of care", "Spiritual beliefs of parents" and "The hard road" CONCLUSIONS: Fully understanding the life experience of these families will allow the implementation of targeted health interventions. Hence, by understanding the meaning of parenting a child with Congenital Heart Disease, healthcare professionals can asses parents emotional statues, information and spiritual needs, financial condition, insurance and marital status using CHD standards so that support is individualized, sensitive and time appropriate.

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2008The qualitative content analysis process 2017Saturation in qualitative research: exploring its conceptualization and operationalization 2014Fourth Generation Evaluation 2020The Oxford Handbook of Qualitative Research 2003Parenting stress and children with heart disease 2018The moderating role of social support for marital adjustment, depression, anxiety, and stress: Evidence from Pakistani working and nonworking women 2017Parenting Stress in Parents of Infants With Congenital Heart Disease and Parents of Healthy Infants: The First Year of Life

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