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

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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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Most cited references 17

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The qualitative content analysis process.

Satu Elo, Helvi Kyngäs (2008)

This paper is a description of inductive and deductive content analysis. Content analysis is a method that may be used with either qualitative or quantitative data and in an inductive or deductive way. Qualitative content analysis is commonly used in nursing studies but little has been published on the analysis process and many research books generally only provide a short description of this method. When using content analysis, the aim was to build a model to describe the phenomenon in a conceptual form. Both inductive and deductive analysis processes are represented as three main phases: preparation, organizing and reporting. The preparation phase is similar in both approaches. The concepts are derived from the data in inductive content analysis. Deductive content analysis is used when the structure of analysis is operationalized on the basis of previous knowledge. Inductive content analysis is used in cases where there are no previous studies dealing with the phenomenon or when it is fragmented. A deductive approach is useful if the general aim was to test a previous theory in a different situation or to compare categories at different time periods.

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Saturation in qualitative research: exploring its conceptualization and operationalization

Benjamin Saunders, Julius Sim, Tom Kingstone … (2017)

Saturation has attained widespread acceptance as a methodological principle in qualitative research. It is commonly taken to indicate that, on the basis of the data that have been collected or analysed hitherto, further data collection and/or analysis are unnecessary. However, there appears to be uncertainty as to how saturation should be conceptualized, and inconsistencies in its use. In this paper, we look to clarify the nature, purposes and uses of saturation, and in doing so add to theoretical debate on the role of saturation across different methodologies. We identify four distinct approaches to saturation, which differ in terms of the extent to which an inductive or a deductive logic is adopted, and the relative emphasis on data collection, data analysis, and theorizing. We explore the purposes saturation might serve in relation to these different approaches, and the implications for how and when saturation will be sought. In examining these issues, we highlight the uncertain logic underlying saturation—as essentially a predictive statement about the unobserved based on the observed, a judgement that, we argue, results in equivocation, and may in part explain the confusion surrounding its use. We conclude that saturation should be operationalized in a way that is consistent with the research question(s), and the theoretical position and analytic framework adopted, but also that there should be some limit to its scope, so as not to risk saturation losing its coherence and potency if its conceptualization and uses are stretched too widely.

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Global, regional, and national burden of congenital heart disease, 1990–2017: a systematic analysis for the Global Burden of Disease Study 2017

(2020)

Summary Background Previous congenital heart disease estimates came from few data sources, were geographically narrow, and did not evaluate congenital heart disease throughout the life course. Completed as part of the Global Burden of Diseases, Injuries, and Risk Factors Study 2017, this study aimed to provide comprehensive estimates of congenital heart disease mortality, prevalence, and disability by age for 195 countries and territories from 1990 to 2017. Methods Mortality estimates were generated for aggregate congenital heart disease and non-fatal estimates for five subcategories (single ventricle and single ventricle pathway congenital heart anomalies; severe congenital heart anomalies excluding single ventricle heart defects; critical malformations of great vessels, congenital valvular heart disease, and patent ductus arteriosus; ventricular septal defect and atrial septal defect; and other congenital heart anomalies), for 1990 through to 2017. All available global data were systematically analysed to generate congenital heart disease mortality estimates (using Cause of Death Ensemble modelling) and prevalence estimates (DisMod-MR 2·1). Systematic literature reviews of all types of congenital anomalies to capture information on prevalence, associated mortality, and long-term health outcomes on congenital heart disease informed subsequent disability estimates. Findings Congenital heart disease caused 261 247 deaths (95% uncertainty interval 216 567–308 159) globally in 2017, a 34·5% decline from 1990, with 180 624 deaths (146 825–214 178) being among infants (aged <1 years). Congenital heart disease mortality rates declined with increasing Socio-demographic Index (SDI); most deaths occurred in countries in the low and low-middle SDI quintiles. The prevalence rates of congenital heart disease at birth changed little temporally or by SDI, resulting in 11 998 283 (10 958 658–13 123 888) people living with congenital heart disease globally, an 18·7% increase from 1990 to 2017, and causing a total of 589 479 (287 200–973 359) years lived with disability. Interpretation Congenital heart disease is a large, rapidly emerging global problem in child health. Without the ability to substantially alter the prevalence of congenital heart disease, interventions and resources must be used to improve survival and quality of life. Our findings highlight the large global inequities in congenital heart disease and can serve as a starting point for policy changes to improve screening, treatment, and data collection. Funding Bill & Melinda Gates Foundation.

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Author and article information

Contributors

Nahid Dehghan Nayeri: nahid.nayeri@gmail.com

Zahra Roddehghan: zarooddehghan@gmail.com

Farzad Mahmoodi: farzad@yahoo.com

Parvin Mahmoodi: Mahmoodi.parvin@gmail.com

Journal

Journal ID (nlm-ta): BMC Psychol

Journal ID (iso-abbrev): BMC Psychol

Title: BMC Psychology

Publisher: BioMed Central (London )

ISSN (Electronic): 2050-7283

Publication date (Electronic): 19 February 2021

Publication date PMC-release: 19 February 2021

Publication date Collection: 2021

Volume: 9

Electronic Location Identifier: 33

Affiliations

[1 ]GRID grid.411705.6, ISNI 0000 0001 0166 0922, School of Nursing and Midwifery, , Tehran University of Medical Sciences, Tohid Square, ; Tohid Square, Nosrat St, Tehran, Iran

[2 ]GRID grid.484406.a, ISNI 0000 0004 0417 6812, Medicine Faculty, , Kurdistan University of Medical Sciences, ; Kurdistan, Iran

Article

Publisher ID: 539

DOI: 10.1186/s40359-021-00539-0

PMC ID: 7893860

PubMed ID: 33608056

SO-VID: 2ba3b794-93c3-4d50-9477-696330ec0f4b

License:

Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

History

Date received : 20 September 2020

Date accepted : 12 February 2021

Funding

Funded by: FundRef http://dx.doi.org/10.13039/501100004484, Tehran University of Medical Sciences and Health Services;

Award ID: 43157

Award Recipient : Nahid Dehghan Nayeri

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Keywords: life experiences,parents,heart disease,pediatric

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Keywords: life experiences, parents, heart disease, pediatric

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

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Annual Reviews Child Development

Most cited references 17

The qualitative content analysis process.

Saturation in qualitative research: exploring its conceptualization and operationalization

Global, regional, and national burden of congenital heart disease, 1990–2017: a systematic analysis for the Global Burden of Disease Study 2017

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