Parents' Experiences of Transition From Hospital to Home After Their Infant's First-Stage Cardiac Surgery

Abstract

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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

“…Three studies conducted focus group interviews [40][41][42], one study analysed journal entries [43], and the remainder conducted interviews. Two studies were mixed methods, including a quantitative arm with self-reported psychometric testing [44,45]. One study triangulated their findings by assessing audio recordings of participant medical consultations [34].…”

“…One study triangulated their findings by assessing audio recordings of participant medical consultations [34]. Four studies had longitudinal data [42,[45][46][47], with two studies reporting on components of larger studies [42,47]. Eighteen articles gathered cross-sectional information.…”

“…Eighteen articles gathered cross-sectional information. Recruitment often occurred at large tertiary teaching hospitals and studies were conducted in Australia [44,48], Canada [49,50], Korea [51,52], Norway [53], Sweden [54][55][56], Switzerland [57], the United Kingdom (UK) [34,45,58] and the United States of America (USA) [40-43, 46, 59, 60].…”

“…Theme 1 Experiencing the diagnosis and treatment of a CCHD child significantly impacts parental health and wellbeing Families of children diagnosed with CCHD were significantly impacted in multiple spheres, including physical and mental health, family functioning and relationships [35,[37][38][39][40][41][42][43][44][45][46][47][48][49][50][51][52][53][54][55] There was also significant evidence of asynchronous responses between mothers and fathers, indicating that they respond differently to experiencing a diagnosis of CCHD and the process that follows [40,41,48,51,52,59]. Intense emotional responses were universal between parents, including grief, shock, distress, depression, and anger [35,[37][38][39][40][41][42][43][44][45][46][47][48][49][50][51][52][53][54]…”

“…Intense emotional responses were universal between parents, including grief, shock, distress, depression, and anger [35,[37][38][39][40][41][42][43][44][45][46][47][48][49][50][51][52][53][54][55] Fathers were more likely to become angry than mothers [40]. Displaying characteristics of post-traumatic stress were common, with trauma resulting from diagnosis, seeing their children unwell (particularly in the unfamiliar intensive care setting) and unexpected events [44,45,48,60]. Further stressors included the loss of their parenting role, painful time-pressured choices and feeling helpless from the loss of control [41,44,48,58].…”