University Hospital Southampton NHS Foundation Trust, School of Health Sciences, University of Southampton, Southampton, UK.
Lay Contributor With Lived Experience of Congenital Heart Disease, UK.
Health Expect. 2024 Oct;27(5):e14179. doi: 10.1111/hex.14179.
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.
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.
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.
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.
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.
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.
本研究的总体目标是探讨、审视和确定患有先天性心脏病的年轻女性在从青春期过渡到成年期时所面临的经历。
这是一项实证定性研究，采用了三种焦点小组的形式。该研究设计和分析采用了女权主义本体论定位，以阐明女性的声音，并提供心脏病学保健的另一种观点。根据研究目的，使用归纳主题方法进行数据分析。
研究纳入了英国的一组 7 名女性参与者（平均年龄 26 岁），她们都患有不同程度的先天性心脏病，在成长过程中需要进行心脏直视手术。
出现了三个具有先行概念的关键主题：(a) 女性身份的影响以及潜在的母性影响，对患有先天性心脏病的年轻女性在医疗和社会文化背景下从青春期过渡的影响，(b) 作为年轻女性在青春期接受心脏手术对手术前后健康的挑战，以及 (c) 现有在线/离线医疗和社会结构对女性在青春期过渡期间健康的影响。这些主题涵盖了从诊断到手术后心脏旅程中形成的心理复杂性的总主题。
本研究扩展了对年轻女性患有先天性心脏病的有限探索，并证实了作为年轻女性从青春期过渡时患有先天性心脏病存在脆弱性和挑战。这是由于性别（生物特征）和性别因素（社会构建的角色）所致。这对心理健康产生了短期和长期影响。这项研究表明，需要加强对患有先天性心脏病的年轻女性的护理和心理支持。这将有助于使女性除了医疗进步提供的预期寿命延长之外，还能实现高质量的生活。
积极参与是确保研究中真实女性声音的关键。本研究得到了患有先天性心脏病的年轻女性的支持。年轻女性参与了研究设计、参与者招募和结果分析。其中两名女性也是本文的合著者。
