Psychological Aspects in Children and Adolescents with Congenital Heart Disease and Their Parents

Utens, Elisabeth M. W. J.; Levert, Eveline M.

doi:10.1007/978-88-470-5699-2_3

Cited by 3 publications

(9 citation statements)

References 35 publications

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“…Utilizing early detection procedures will improve prenatal care and increase care options as well as improve clinical outcomes. Early detection will enable the families to "expedite timely referral for fetal echocardiography and consultation" [16]. The advantages of prenatal diagnosis of SVCHD include having more information from education and prenatal testing, choosing a delivery location, terminating or continuing the pregnancy, and involving the neonatal cardiac surgical center.…”

Section: Chd In Infancymentioning

confidence: 99%

“…The advantages of prenatal diagnosis of SVCHD include having more information from education and prenatal testing, choosing a delivery location, terminating or continuing the pregnancy, and involving the neonatal cardiac surgical center. Another benefit of prenatal diagnosis is detecting the diagnosis of "hypoplastic left heart syndrome (HLHS), which is associated with improved clinical status and survival, and improved preoperative management and fewer perioperative neurological events" [16]. Prenatal diagnosis not only prepares families in understanding their child's condition by the available education during fetal care visits but also allows parents time to grieve and move through the grief stages.…”

Section: Chd In Infancymentioning

confidence: 99%

“…(1) aortic stenosis with evolving hypoplastic left heart syndrome (HLHS), (2) HLHS with intact atrial septum, and (3) pulmonary atresia with intact ventricular septum and evolving hypoplastic right ventricle" [16].…”

Section: Chd In Infancymentioning

confidence: 99%

“…These visits facilitate the development of trust between the parents and the team that will be taking care of the infant. Parents interested in knowing the surroundings of where their infant will be cared for after birth are able to tour the cardiac intensive care unit (ICU) Tours offer a high level of patient centered care and help families prepare and receive pertinent information about their chosen facility [16].…”

Section: Chd In Infancymentioning

confidence: 99%

“…There are children with SVCHD who do meet their developmental milestones on time, while others need more support to meet milestones. These outcomes are difficult to predict prenatally, and will be discussed later in the paper [16].…”

Section: Chd In Infancymentioning

confidence: 99%

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Promoting Resilience in Families with Children with Congenital Heart Disease

2019

IJP

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Congenital heart disease (CHD) is the most common birth defect, affecting approximately 40,000 infants annually in the US [1]. CHD involves a variety of heart defects, with a wide spectrum from simple to moderate to complex. Due to advances in pediatric cardiology and cardiac surgery, life expectancy in these children has increased drastically over the past decades. Now 90% of infants diagnosed with CHD live well into adulthood [2]. Due to the increase in survival rates, attention has shifted towards the impact of CHD on psychological and cognitive functioning [3]. Children with CHD are at risk for neurodevelopmental and psychosocial problems related to operative factors. Children with CHD display lower cognitive functioning, and higher rates in behavioral, attentional and emotional problems. Increased parental stress also adds to the psychosocial issues experienced by these children. For this reason, psychological care needed to promote resiliency in this population. Incorporating psychological services into treatment protocols with children with CHD is beneficial and will improve behavioral and emotional functioning across their lifespan [4]. This paper will review the definitions of resiliency and Congenital Heart Disease, as well as the professional roles of people treating infants with CHD, the risk factors deterring resiliency, and the developmental outcomes in children with CHD. It will then examine some of the most common psychological interventions for children with CHD and chronic illness, including CBT and psychoeducational interventions, and family-based interventions that also include a psychoeducational component. I will conclude by discussing the value of this multidimensional approach and why it is the most effective intervention strategy to promote resiliency in children with CHD.

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Section: Chd In Infancymentioning

confidence: 99%

Section: Chd In Infancymentioning

confidence: 99%

Section: Chd In Infancymentioning

confidence: 99%

Section: Chd In Infancymentioning

confidence: 99%

Section: Chd In Infancymentioning

confidence: 99%

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Promoting Resilience in Families with Children with Congenital Heart Disease

2019

IJP

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Growing Up

McCusker

2016

Congenital Heart Disease and Neurodevelopment

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Experiences and expectations of parents when young people with congenital heart disease transfer from pediatric to adult care: A qualitative systematic review

Lykkeberg,

Noergaard,

Bjerrum

2024

J Child Health Care

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Parents encounter challenges when their child with congenital heart disease is transferred from pediatric to adult care. Until recently these parents’ experiences and expectations of their child’s transfer have received less attention. This systematic review aims to identify and synthesize qualitative evidence on parental experiences and expectations about their child’s transfer from pediatric to adult care using a meta-aggregation approach. Six studies were included with 39 findings being aggregated into seven categories. Three syntheses were formed: Information is a prerequisite for supporting young people’s transfer. The transition process should be well-prepared, individualized, and based on young people’s maturity. Changing parental roles causes ambivalent feelings requiring support in the transfer process. Parents regard transfer from pediatric to adult care as a natural developmental step. However, some parents are anxious and worried while others found the transfer as feasible as other transitions in their child’s life. Involving parents in the transition process enables them to facilitate their child’s transfer. Parents worry their child is too young to take responsibility for their health. Parental roles from being a full caregiver to becoming a supportive person cause ambivalent feelings. These findings align with research on parents’ experiences of young people with long-term conditions.

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Psychological Aspects in Children and Adolescents with Congenital Heart Disease and Their Parents

Cited by 3 publications

References 35 publications

Promoting Resilience in Families with Children with Congenital Heart Disease

Promoting Resilience in Families with Children with Congenital Heart Disease

Growing Up

Experiences and expectations of parents when young people with congenital heart disease transfer from pediatric to adult care: A qualitative systematic review

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