Date Published: March 14, 2019
Publisher: Public Library of Science
Author(s): Zhi Hong Ni, Hai Tao Lv, Sheng Ding, Wen Ying Yao, Felipe Hada Sanders.
To explore the home care experiences of caregivers taking care of CHD children before and after cardiac surgery.
Despite the prevalence of congenital heart disease (CHD) in childhood, little is known about the experiences and impacts on the children and their caregivers after CHD diagnosis and surgery. Such knowledge is needed for meaningful support.
A qualitative descriptive study.
Twenty-two caregivers of CHD children undergoing cardiac surgery participated in semi-structured interviews at a University Children’s Hospital in China. Data were collected by an experienced and trained interviewer. Qualitative content analysis was chosen to describe the experiences of the caregivers.
Caregivers of CHD children experienced significant demands. After the children underwent their CHD operations, the caregivers experienced complex psychological feelings and excessive stress impacting upon theirlives. In addition, caregivers constantly adapted their roles with self-fulfillment in caring activities.
CHD surgery has a major impact on the emotions and daily lives of children and their caregivers. This study offers a framework for understanding the importance of actively listening to caregivers so coping strategies can be implemented.
Theexperiencesdescribed in this study contribute to a better understanding of the needs of caregivers whose children underwent CHD operations. They also provide valuable information to professional medical care staff that developfuture nursing assessments.
Congenital heart disease (CHD) is definedas having defect(s) (present since birth)in the structure of the heart.CHD includes several types of structural heart defects that develop prenatally, includingventricular septal defect (VSD), atrial septal defect (ASD), patent ductus arteriosus (PDA), and Tetralogy of Fallot (TOF).The worldwide prevalence of CHDis estimated at 1.35 million annually , and the incidence of children born with CHD is 1% , with over 100,000 new cases in China each year .With the development of medicine, when women are 18–20 weeks pregnant, fetuses can be screened for congenital heart disease under cardiac ultrasound. If a fetus has complex congenital heart disease, pregnant women can choose to terminate pregnancy at this stage.However, the detection rate of complex congenital heart disease by prenatal ultrasound screening is less than 50%.
Analysis of the data identified five main themes, and each theme was supported by verbatim quotes from the study participants. The five themes are discussed below in the following order: (1) excessive mental burden, (2) under pressure and agony, (3) the impact on personal life, (4) adapting roles constantly, and (5) self-fulfillment in caring activities (Table 3).
We conducted a qualitative descriptive study via interviews on the home care experiences of 22 caregivers of CHD children who had undergone cardiac surgery, and found that the postoperative care and care pathways of children with different types of CHD were similar. The diagnosis and surgical treatment of CHD children was a difficult process for the caregivers, and they were constantly under great pressure. Therefore, their needs and feelings should become the focus of the health care professionals’ attention.
This study had some limitations. For example, we only recruited caregivers whose CHD children were aged between 1 month and 60 months. In a future study, we intend to expand the scope of study subjects and longitudinally interview the recruited caregivers. We also noted that five themes had some overlapping, which appeared to be inevitable in this study.
This study describes the home care experiences and needs of caregivers whose children underwent CHD operations. The experiences of caregivers providing care to CHD children are complex, Hence, we need to sufficientlytrain healthcare staff so that they identify the needsofcaregivers and provide them with targeted interventionthat meets their demands. The findings from this study highlight the need for more effective and individualized nursing intervention for CHD caregivers.
In this study, we demonstrated that caregivers of CHD children who underwent cardiac surgery are under great psychological pressure during the home care rehabilitation period post operation. Health care professionals should try to fully understand the feelings of these caregivers, and provide them with planned and relevant medical guidance as well as related information on the surgery to enhance their confidence. To further strengthen the care and emotional support,health care professionals should develop care plans for both CHD children and their caregivers, and reduce the intensity of stress effectively so that caregivers can maintain their physical and mental health.