Home care experience and nursing needs of caregivers of children undergoing congenital heart disease operations: A qualitative descriptive study

Abstract

Aims and objectivesTo explore the home care experiences of caregivers taking care of CHD children before and after cardiac surgery.BackgroundDespite 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.DesignA qualitative descriptive study.MethodsTwenty-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.ResultsCaregivers 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.ConclusionsCHD 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.Relevance to clinical practiceTheexperiencesdescribed 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.

Parental experiences of their infant’s hospital admission undergoing cardiac surgery: A systematic review

“…24 Hong Ni et al (2019) showed similar to our review that parents who had a child with CHD, undergo surgery, experienced that they were 'breaking the good life'. 25 In our review, parents also shared that they felt that their view of life changed drastically.…”

How do caregivers of children with congenital heart diseases access and navigate the healthcare system in Ethiopia?

“…These findings are important given that caregivers of children who underwent cardiac surgery are under great psychological pressure. CHD surgery has a major impact on the financial status of the family, as well as their emotions and well-being [22]. However, it is important to note that caregivers described that being scheduled for surgery induced anxiety but also hope.…”

“…Caregivers in our study reported that CHD of their child was misdiagnosed multiple times prior to seeking care at a large hospital and patients were waiting for the surgery for more than a year. CHD care in LMICs is not easily accessible for caregivers [15,17,22]. Many visited multiple services and were not able to access surgical services.…”

Ansiedade dos familiares de crianças cardiopatas na fase pré-operatória: Reflexões a respeito da atuação do enfermeiro

“…Elas são definidas como anomalias estruturais ou funcionais desenvolvidas durante o período embrionário. Algumas malformações nem sempre são aparentes no Recém-Nascido (RN), podendo levar dias, meses ou até anos para se manifestarem (Ni et al, 2019). De etiologia variada, as CCs podem ser desencadeadas por diversos fatores, como: genético, hereditário, ambiental e social (Carlsson, Marttala, Mattsson & Ringnér, 2016a;Carlsson, Bergman, Wadensten & Mattson, 2016b;Queirora et al, 2017;Im et al, 2018).…”

“…As CCs mais frequentes que podem necessitar de correção cirúrgica são acianóticas, a saber: PCA, CIA, CIV e Desvio do Septo Atrioventricular (DSAV) parcial ou total, cujo predomínio em crianças está relacionado à ocorrência da trissomia 21, conhecida como Síndrome de Dawn (Leite, Mendonça, Cipolotti & Melo, 2012;Ni et al, 2019;Pedra et al, 2019;Saxena et al, 2019).…”