Living with congenital heart disease: a qualitative study to explore psychosocial impacts in adulthood.

IF 1.2 Q4 CARDIAC & CARDIOVASCULAR SYSTEMS
Larissa Lloyd, Sasha Ruban, Tanya Badal, Geoff Strange, David S Celermajer, Carissa Bonner
{"title":"Living with congenital heart disease: a qualitative study to explore psychosocial impacts in adulthood.","authors":"Larissa Lloyd, Sasha Ruban, Tanya Badal, Geoff Strange, David S Celermajer, Carissa Bonner","doi":"10.1016/j.ijcchd.2025.100610","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>The survival prospects of adults with congenital heart disease have improved considerably due to improved surgical interventions, resulting in a growing population. This study aims to explore the experiences of adults with congenital heart disease, to identify support needs.</p><p><strong>Methods: </strong>Participants were recruited from the National Australian Congenital Heart Disease Registry using purposive sampling to ensure diversity in terms of gender, rurality and disease complexity. Semi-structured interviews were conducted with adults with congenital heart disease. The interviews were recorded digitally and transcribed verbatim. Framework Analysis was used to ensure rigour in identifying themes.</p><p><strong>Results: </strong>43 interviews were completed (23 males and 20 females; age 20 to 54 years). Three main themes and seven subthemes were identified to explain varying experiences of living with congenital heart disease: I. Lifestyle factors; (i) physical activity, (ii) weight management. II. Practical issues; (iii) employment, (iv) financial stress, (v) education. III. Psychosocial impact; (vi) mental health and resilience, and (vii) social engagement. Participants across a range of disease complexities reported more impact on their lives when they felt inadequately supported by their healthcare providers to address these challenges, such as insufficient education on exercise leading to difficulty performing clinically recommended physical activity.</p><p><strong>Conclusions: </strong>The lived experiences of adults living with congenital heart disease highlight specific areas needing support, which could inform future improvements in their \"whole of life\" care. This could include referral to allied health professionals, education across lifestyle and practical domains, and appropriate peer support networks.</p>","PeriodicalId":73429,"journal":{"name":"International journal of cardiology. Congenital heart disease","volume":"21 ","pages":"100610"},"PeriodicalIF":1.2000,"publicationDate":"2025-07-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12355555/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"International journal of cardiology. Congenital heart disease","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1016/j.ijcchd.2025.100610","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2025/9/1 0:00:00","PubModel":"eCollection","JCR":"Q4","JCRName":"CARDIAC & CARDIOVASCULAR SYSTEMS","Score":null,"Total":0}
引用次数: 0

Abstract

Background: The survival prospects of adults with congenital heart disease have improved considerably due to improved surgical interventions, resulting in a growing population. This study aims to explore the experiences of adults with congenital heart disease, to identify support needs.

Methods: Participants were recruited from the National Australian Congenital Heart Disease Registry using purposive sampling to ensure diversity in terms of gender, rurality and disease complexity. Semi-structured interviews were conducted with adults with congenital heart disease. The interviews were recorded digitally and transcribed verbatim. Framework Analysis was used to ensure rigour in identifying themes.

Results: 43 interviews were completed (23 males and 20 females; age 20 to 54 years). Three main themes and seven subthemes were identified to explain varying experiences of living with congenital heart disease: I. Lifestyle factors; (i) physical activity, (ii) weight management. II. Practical issues; (iii) employment, (iv) financial stress, (v) education. III. Psychosocial impact; (vi) mental health and resilience, and (vii) social engagement. Participants across a range of disease complexities reported more impact on their lives when they felt inadequately supported by their healthcare providers to address these challenges, such as insufficient education on exercise leading to difficulty performing clinically recommended physical activity.

Conclusions: The lived experiences of adults living with congenital heart disease highlight specific areas needing support, which could inform future improvements in their "whole of life" care. This could include referral to allied health professionals, education across lifestyle and practical domains, and appropriate peer support networks.

Abstract Image

Abstract Image

患有先天性心脏病:一项探讨成年期社会心理影响的定性研究。
背景:由于手术干预的改善,成人先天性心脏病患者的生存前景大大改善,导致患者数量不断增加。本研究旨在探讨成人先天性心脏病患者的经历,以确定支持需求。方法:参与者从澳大利亚国家先天性心脏病登记处招募,采用有目的抽样,以确保性别、农村性和疾病复杂性方面的多样性。对患有先天性心脏病的成年人进行了半结构化访谈。采访以数字方式记录下来,并逐字抄录。采用框架分析来确保确定主题的严谨性。结果:共完成访谈43例(男23例,女20例,年龄20 ~ 54岁)。确定了三个主要主题和七个次要主题来解释患有先天性心脏病的不同经历:1 .生活方式因素;(i)身体活动;(ii)体重管理。2。实际问题;(iii)就业,(iv)经济压力,(v)教育。3。社会心理的影响;(六)心理健康和复原力;(七)社会参与。各种疾病复杂程度的参与者报告说,当他们感到没有得到医疗保健提供者的充分支持来应对这些挑战时,他们的生活受到更大的影响,例如运动教育不足导致难以进行临床推荐的体育活动。结论:成人先天性心脏病患者的生活经历突出了需要支持的特定领域,这可以为未来改善他们的“终身”护理提供信息。这可能包括转诊到联合卫生专业人员,跨生活方式和实践领域的教育,以及适当的同伴支持网络。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
求助全文
约1分钟内获得全文 求助全文
来源期刊
International journal of cardiology. Congenital heart disease
International journal of cardiology. Congenital heart disease Cardiology and Cardiovascular Medicine
自引率
0.00%
发文量
0
审稿时长
83 days
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
确定
请完成安全验证×
copy
已复制链接
快去分享给好友吧!
我知道了
右上角分享
点击右上角分享
0
联系我们:info@booksci.cn Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。 Copyright © 2023 布克学术 All rights reserved.
京ICP备2023020795号-1
ghs 京公网安备 11010802042870号
Book学术文献互助
Book学术文献互助群
群 号:604180095
Book学术官方微信