Thomi Mirjam, Pfammatter Jean-Pierre, Spichiger Elisabeth
University Children's Hospital, Inselspital, Bern University Hospital, Bern, Switzerland.
Center for Congenital Heart Disease, Department of Cardiology, Inselspital, Bern University Hospital, Bern, Switzerland.
J Spec Pediatr Nurs. 2019 Oct;24(4):e12269. doi: 10.1111/jspn.12269. Epub 2019 Aug 30.
To explore both mothers' and fathers' experiences from prenatal or postnatal diagnosis of their newborn's congenital heart disease (CHD) to the first discharge after heart surgery in a Swiss university children's hospital.
A qualitative research approach, based on a constructivist paradigm, was applied to explore participants' experiences and perceptions. Parents of nine children with moderate to severe CHD participated in semistructured joint couple interviews. Data were analyzed inductively via an iterative process, following the steps of thematic analysis.
Between the child's CHD diagnosis and hospital discharge after neonatal cardiac surgery, the overarching theme for parents was being confronted with demanding emotional and hands-on work. This parental work included four themes with subthemes: Parents had to tackle a route through an unknown hospital world from receiving the CHD diagnosis and experiencing delivery to attending to their child in the pediatric intensive care unit and during surgery, as well as during the transfer to and the stay on the pediatric cardiac unit. They experienced an at times challenging interplay with health care professionals, performed teamwork as the nuclear family and managed concerned relatives and friends.
Health care professionals should establish trustful relationships with parents, while accompanying families continuously, providing consistent, straightforward information, and expressing appreciation for the parents' exceptional emotional and hands-on work. Health care professionals' awareness of parent's experiences is vital to compassionate family-centered care.
探讨在瑞士一家大学儿童医院中，从新生儿先天性心脏病（CHD）的产前或产后诊断到心脏手术后首次出院期间，母亲和父亲的经历。
采用基于建构主义范式的定性研究方法，以探索参与者的经历和看法。九名患有中度至重度先天性心脏病患儿的父母参加了半结构化的夫妻联合访谈。按照主题分析的步骤，通过迭代过程对数据进行归纳分析。
在孩子被诊断出患有先天性心脏病到新生儿心脏手术后出院期间，父母面临的首要问题是应对繁重的情感和实际工作。这种父母工作包括四个主题及子主题：从收到先天性心脏病诊断、经历分娩到在儿科重症监护室、手术期间以及转至儿科心脏科并在该科室住院期间照顾孩子，父母必须在陌生的医院环境中摸索前行。他们经历了有时颇具挑战性的与医护人员的互动，作为核心家庭进行团队协作，并应对忧心忡忡的亲朋好友。
医护人员应与父母建立信任关系，同时持续陪伴家庭，提供一致、直接的信息，并对父母非凡的情感和实际工作表示赞赏。医护人员对父母经历的认知对于富有同情心的以家庭为中心的护理至关重要。
