了解先天性心脏病（CHD）青少年向成人护理过渡的障碍和促进因素：成人视角的定性研究

IF 3.1 2区医学 Q2 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH

Patient Education and Counseling Pub Date : 2025-09-26 DOI:10.1016/j.pec.2025.109364

Sasha Ruban , Larissa Lloyd , Tanya Badal , Geoff Strange , David S. Celermajer , Carissa Bonner

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引用次数: 0

摘要

背景/目的先天性心脏病（CHD）是指出生时一系列心脏结构异常。由于手术和术后护理的进步，生存率和预后得到了改善，导致更多的患者从儿科转向成人医疗保健机构。本研究旨在探索这种转变的各种经验，并确定改进流程的方法，以使澳大利亚的护理能够持续。方法采用阳性抽样方法，从一项更大的研究中招募不同样本的冠心病患者。在半结构化的在线访谈中，成年参与者被要求反思他们的童年过渡经历。访谈录音，转录和编码使用框架分析。结果确定了4个主题：1)过渡的感知体验，(2)对家庭和更广泛的支持网络的影响，(3)患者的心理社会需求，以及(4)逐渐独立的作用。积极过渡经验的促进因素包括教育、主动交接和明确的预期信息。障碍包括缺乏对患者的授权，缺乏临床医生的同情和整体护理。家庭影响包括父母角色的改变和对照顾者的安慰需求。心理社会需求包括对精神健康的支持。不断发展的独立性和成熟度影响个人管理过渡和持续护理的能力。结论：研究结果表明，需要改进流程和沟通，以促进澳大利亚冠心病患者的更全面的护理模式。这包括有计划的过渡协调、明确的信息和对冠心病患者及其照顾者的心理健康和整体福祉的支持。实践意义通过结构改变来提高成功转化的机会，可以为冠心病患者带来更好的长期健康结果。

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Understanding barriers and facilitators of transition to adult care among adolescents with Congenital Heart Disease (CHD): A qualitative study of adult perspectives

Background/Objectives

Congenital heart disease (CHD) refers to a spectrum of structural abnormalities of the heart at birth. Survival and outcomes have improved due to advances in surgery and post-operative care, resulting in more patients transitioning from paediatric to adult healthcare settings. This study aimed to explore varied experiences of this transition and identify ways to improve processes to enable continuity of care in Australia.

Methods

Purposive sampling was used to recruit a diverse sample of CHD patients from a larger study. In semi-structured online interviews, adult participants were asked to reflect on their childhood transition experience. Interviews were audio recorded, transcribed and coded using framework analysis.

Results

4 main themes were identified: i) perceived experience of transition, (ii) impact on family and wider support network, (iii) psychosocial needs of the patient, and (iv) the role of evolving independence. Facilitators of a positive transition experience included education, proactive handover and clear information about what to expect. Barriers included lack of empowerment for patients and lack of empathy and holistic care from clinicians. Family impacts included the changing parental role and need for reassurance for caregivers. Psychosocial needs included support for mental health. Evolving independence and maturity influenced individuals’ ability to manage their transition and ongoing care.

Conclusions

The findings suggest a need to improve processes and communication, to facilitate a more holistic model of care for CHD patients in Australia. This includes planned coordination of transition, clear information and support for mental health and overall wellbeing of CHD patients and their caregivers.

Practice implications

Structural changes to improve the chance of successful transition could lead to better long-term health outcomes for individuals with CHD.

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来源期刊

Patient Education and Counseling 医学-公共卫生、环境卫生与职业卫生

CiteScore

5.60

自引率

11.40%

发文量

384

审稿时长

46 days

期刊介绍： Patient Education and Counseling is an interdisciplinary, international journal for patient education and health promotion researchers, managers and clinicians. The journal seeks to explore and elucidate the educational, counseling and communication models in health care. Its aim is to provide a forum for fundamental as well as applied research, and to promote the study of organizational issues involved with the delivery of patient education, counseling, health promotion services and training models in improving communication between providers and patients.