Exploring the lived experiences of young women with congenital heart disease through adolescence: a qualitative feminist study using focus groups

Abstract

Objectives: the overarching aim of this study is to explore, examine and identify the experience that young women with congenital heart disease face as they transition through adolescence into womanhood.

Design: this is an empirical qualitative study conducted in the form of three focus groups. The study design and analysis adopted a feminist ontological positioning to elucidate the voice of women and offer an alternative perspective of cardiology health care. Data were analysed using the inductive thematic approach informed by the study aims.

Participants: a group of seven female participants (mean age 26) based in the United Kingdom, each with varying degrees of congenital heart defects that required open heart surgery growing up, was included in the study.

Results: three key themes with antecedent concepts emerged: (a) the impact of womanhood and the potential influence of motherhood on the young women themselves transitioning through adolescence with CHD within medical and sociocultural contexts, (b) the challenges of being a woman and undergoing heart surgery during adolescence on the young women's health before, during and after surgery and (c) the effect of existing online/offline healthcare and social structures on women's health during transitioning through adolescence These themes were encompassed under an overarching theme of psychological complexities developed throughout the cardiac journey from diagnosis through to post-surgery.

Conclusion: this study built on the limited exploration of being a young woman and having CHD and confirmed that there are vulnerabilities and challenges in having CHD as a young woman transitioning through adolescence. This was a result of sex (biological characteristics) and gender factors (socially constructed roles). This leads to short- and long-term implications on psychological well-being. This research indicates that enhancements are needed in the provision of care and psychological support for young women with CHD. This will help to enable women to achieve a good quality of life in addition to increased life expectancy offered by medical advancements.

Patient or public contribution: active participant involvement was crucial to ensure the authentic female voice in the study. This study received support from young women with congenital heart disease. Young women contributed to the study design, recruitment of participants and analysis of results. Two of the women were also co-authors of this paper.

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Identifiers

ORCID for Lindsay Welch: orcid.org/0000-0001-5564-2252

ORCID for Lynn Calman: orcid.org/0000-0002-9964-6017

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