What is Known About Critical Congenital Heart Disease Diagnosis and Management Experiences from the Perspectives of Family and Healthcare Providers? A Systematic Integrative Literature Review

Abstract

The experience of diagnosis, decision-making and management in critical congenital heart disease is layered with complexity for both families and clinicians. We synthesise the current evidence regarding the family and healthcare provider experience of critical congenital heart disease diagnosis and management. A systematic integrative literature review was conducted by keyword search of online databases, MEDLINE (Ovid), PsycINFO, Cochrane, cumulative index to nursing and allied health literature (CINAHL Plus) and two journals, the Journal of Indigenous Research and Midwifery Journal from 1990. Inclusion and exclusion criteria were applied to search results with citation mining of final included papers to ensure completeness. Two researchers assessed study quality combining three tools. A third researcher reviewed papers where no consensus was reached. Data was coded and analysed in four phases resulting in final refined themes to summarise the findings. Of 1817 unique papers, 22 met the inclusion criteria. The overall quality of the included studies was generally good, apart from three of fair quality. There is little information on the experience of the healthcare provider. Thematic analysis identified three themes relating to the family experience: (1) The diagnosis and treatment of a critical congenital heart disease child significantly impacts parental health and wellbeing. (2) The way that healthcare and information is provided influences parental response and adaptation, and (3) parental responses and adaptation can be influenced by how and when support occurs. The experience of diagnosis and management of a critical congenital heart disease child is stressful and life-changing for families. Further research is needed into the experience of minority and socially deprived families, and of the healthcare provider, to inform potential interventions at the healthcare provider and institutional levels to improve family experience and support.

Attitudes of Chinese maternal and child health professionals toward termination of pregnancy for fetal anomaly: a cross-sectional survey

“…Over 50% of maternal and child health practitioners endorsed termination in instances of congenital heart disease and phenylketonuria. The diagnostic journey, decision-making process, and subsequent management of critical congenital heart disease introduce a multifaceted challenge for clinicians and families ( 26 ). Particularly, the diagnosis and treatment of a critically ill congenital heart disease child significantly impact parents’ health and wellbeing, and the experience is profoundly stressful and transformative for families ( 26 ).…”

“…The diagnostic journey, decision-making process, and subsequent management of critical congenital heart disease introduce a multifaceted challenge for clinicians and families ( 26 ). Particularly, the diagnosis and treatment of a critically ill congenital heart disease child significantly impact parents’ health and wellbeing, and the experience is profoundly stressful and transformative for families ( 26 ). Regarding phenylketonuria, despite the availability of clear treatment options, the prognosis varies, and continuous treatment from the neonatal period, with lifelong treatment recommended ( 27 ).…”

Long-Term Effects of Child Early Surgical Ventricular Septal Defect Repair on Maternal Stress

“…Accordingly, in the period after the child's heart surgery, 80% of the parents reported clinically significant trauma symptoms, with up to 30% meeting the criteria for a PTSD diagnosis [25]. The series of stressful events associated with the child's CHD might trigger subsequent other psychosocial stressors [26], like marital or financial issues [27], resulting in considerably high levels of distress experienced by parents [28].…”

“…In the period prior to the child's cardiac surgery, parental stress levels start to rise [29], followed by high levels of stress and anxiety during the whole peri-operative period [30]. Moreover, affected parents are reported to have an increased risk for mental health issues, particularly in the immediate post-surgery period [25,28]. Studies with longer follow-ups revealed mixed results on parental psychosocial adjustment after their child's heart surgery.…”