Kankaya Eda Ayten, Özer Özlü Nazife Gamze, Müezzinler Evsine Nihal
Department of Surgical Nursing, Dokuz Eylül University Nursing Faculty, Turkey.
Department of Surgical Nursing, Dokuz Eylül University Nursing Faculty, Turkey.
J Pediatr Nurs. 2025 Jan-Feb;80:137-146. doi: 10.1016/j.pedn.2024.11.016. Epub 2024 Nov 28.
This study explores the experiences of caregivers of pediatric cardiac surgery patients, aiming to deepen understanding of their role and improve the caregiving process.
A qualitative, phenomenological approach was employed using individual, semi-structured interviews with a heterogeneous sample of caregivers (both mothers and fathers) of children who had undergone surgery for congenital heart disease. Interviews were conducted face-to-face from June 2023 to May 2024, following Creswell's interview techniques. Data collection and analysis were performed simultaneously using MAXQDA software.
Participants included caregivers of children aged 2 months to 17 years, with caregivers themselves aged 25 to 50 years. Most children had undergone surgery for congenital heart valve disease, with surgeries ranging from one to three. Three main themes and nine sub-themes were identified: (1) "Comprehensive health journey" described caregivers' experiences from diagnosis through treatment and their interactions with healthcare professionals; (2) "Challenges" encompassed social isolation, financial strain, work-life balance issues, and the impact on the education process; and (3) "Uncertainty" captured caregivers' anxiety about the future and concerns regarding home care.
The findings offer valuable insights into the challenges and needs of caregivers in the pediatric cardiac surgery context, highlighting areas where support services and interventions could be beneficial.
The study emphasizes the importance of healthcare professionals providing caregivers with clear information and empathetic support, which can enhance both caregiver well-being and patient outcomes.
本研究探讨小儿心脏手术患者照顾者的经历，旨在加深对其角色的理解并改善护理过程。
采用定性的现象学方法，对接受先天性心脏病手术患儿的照顾者（包括母亲和父亲）进行个体半结构化访谈，样本具有异质性。访谈于2023年6月至2024年5月面对面进行，遵循克雷斯韦尔的访谈技巧。使用MAXQDA软件同时进行数据收集和分析。
参与者包括2个月至17岁儿童的照顾者，照顾者年龄在25至50岁之间。大多数儿童接受过先天性心脏瓣膜病手术，手术次数从一次到三次不等。确定了三个主要主题和九个子主题：（1）“全面的健康历程”描述了照顾者从诊断到治疗的经历以及他们与医护人员的互动；（2）“挑战”包括社会隔离、经济压力、工作与生活平衡问题以及对教育过程的影响；（3）“不确定性”体现了照顾者对未来的焦虑以及对家庭护理的担忧。
研究结果为小儿心脏手术背景下照顾者的挑战和需求提供了有价值的见解，突出了支持服务和干预措施可能有益的领域。
该研究强调了医护人员向照顾者提供清晰信息和共情支持的重要性，这可以提高照顾者的幸福感和患者的治疗效果。
