Experience of fathers of neonates with congenital heart disease in South Korea

Kim, Jeonghyun; Cha, Chiyoung

doi:10.1016/j.hrtlng.2017.08.008

Cited by 11 publications

(26 citation statements)

References 23 publications

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“…Like parents in our study, parents in earlier publications were initially shocked when receiving a CHD diagnosis of their newborn. They described intense emotions, fear, and helplessness; some even felt guilty about the child's CHD (Harvey et al, ; Kim & Cha, ; Re et al, ; Rempel et al, ; Sood et al, ; Wei et al, ). Regarding guilt, the experiences of parents in our study differed.…”

Section: Discussionmentioning

confidence: 99%

“…Studies focused mainly on parental stress and anxiety (Amber Soulvie et al, 2012;Wei et al, 2015). In addition, parents' experiences with their child's cardiac diagnosis (Harvey et al, 2013;Kim & Cha, 2017;Re, Dean, & Menahem, 2013;Sood et al, 2018), the PICU stay (Amber Soulvie et al, 2012;Bruce et al, 2013;Harvey et al, 2013;Re et al, 2013;Rempel, Ravindran, Rogers, & Magill-Evans, 2013;Sood et al, 2018), transfer to the pediatric cardiac unit or discharge planning (Fischer et al, 2012;Sood et al, 2018;Tregay et al, 2016) have been explored in several studies.…”

Section: Introductionmentioning

confidence: 99%

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Parental emotional and hands‐on work—Experiences of parents with a newborn undergoing congenital heart surgery: A qualitative study

Thomi

Pfammatter

Spichiger

2019

Specialist Pediatric Nursing

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Purpose To explore both mothers’ and fathers’ experiences from prenatal or postnatal diagnosis of their newborn's congenital heart disease (CHD) to the first discharge after heart surgery in a Swiss university children's hospital. Design and Method A qualitative research approach, based on a constructivist paradigm, was applied to explore participants’ experiences and perceptions. Parents of nine children with moderate to severe CHD participated in semistructured joint couple interviews. Data were analyzed inductively via an iterative process, following the steps of thematic analysis. Results Between the child's CHD diagnosis and hospital discharge after neonatal cardiac surgery, the overarching theme for parents was being confronted with demanding emotional and hands‐on work. This parental work included four themes with subthemes: Parents had to tackle a route through an unknown hospital world from receiving the CHD diagnosis and experiencing delivery to attending to their child in the pediatric intensive care unit and during surgery, as well as during the transfer to and the stay on the pediatric cardiac unit. They experienced an at times challenging interplay with health care professionals, performed teamwork as the nuclear family and managed concerned relatives and friends. Practice Implications Health care professionals should establish trustful relationships with parents, while accompanying families continuously, providing consistent, straightforward information, and expressing appreciation for the parents’ exceptional emotional and hands‐on work. Health care professionals’ awareness of parent's experiences is vital to compassionate family‐centered care.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Parental emotional and hands‐on work—Experiences of parents with a newborn undergoing congenital heart surgery: A qualitative study

Thomi

Pfammatter

Spichiger

2019

Specialist Pediatric Nursing

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“…However, most children with CHDs present with failure to thrive, cough, repeated chest infections, difficulty in breathing, exercise intolerance, and bluish discoloration of mucous membranes (cyanosis) [18]. Congenital heart defects are associated with serious complications such as cognitive impairment [19][20][21][22][23][24][25][26][27] and often affect families and individuals both emotionally and financially [23,[28][29][30][31].…”

Section: Introductionmentioning

confidence: 99%

Congenital heart diseases: genetics, non-inherited risk factors, and signaling pathways

Suluba

Liu

Xia

et al. 2020

Egypt J Med Hum Genet

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Background: Congenital heart diseases (CHDs) are the most common congenital anomalies with an estimated prevalence of 8 in 1000 live births. CHDs occur as a result of abnormal embryogenesis of the heart. Congenital heart diseases are associated with significant mortality and morbidity. The damage of the heart is irreversible due to a lack of regeneration potential, and usually, the patients may require surgical intervention. Studying the developmental biology of the heart is essential not only in understanding the mechanisms and pathogenesis of congenital heart diseases but also in providing us with insight towards developing new preventive and treatment methods. Main body: The etiology of congenital heart diseases is still elusive. Both genetic and environmental factors have been implicated to play a role in the pathogenesis of the diseases. Recently, cardiac transcription factors, cardiacspecific genes, and signaling pathways, which are responsible for early cardiac morphogenesis have been extensively studied in both human and animal experiments but leave much to be desired. The discovery of novel genetic methods such as next generation sequencing and chromosomal microarrays have led to further study the genes, non-coding RNAs and subtle chromosomal changes, elucidating their implications to the etiology of congenital heart diseases. Studies have also implicated non-hereditary risk factors such as rubella infection, teratogens, maternal age, diabetes mellitus, and abnormal hemodynamics in causing CHDs. These etiological factors raise questions on multifactorial etiology of CHDs. It is therefore important to endeavor in research based on finding the causes of CHDs. Finding causative factors will enable us to plan intervention strategies and mitigate the consequences associated with CHDs. This review, therefore, puts forward the genetic and non-genetic causes of congenital heart diseases. Besides, it discusses crucial signaling pathways which are involved in early cardiac morphogenesis. Consequently, we aim to consolidate our knowledge on multifactorial causes of CHDs so as to pave a way for further research regarding CHDs. Conclusion: The multifactorial etiology of congenital heart diseases gives us a challenge to explicitly establishing specific causative factors and therefore plan intervention strategies. More well-designed studies and the use of novel genetic technologies could be the way through the discovery of etiological factors implicated in the pathogenesis of congenital heart diseases.

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“…(14,21,41,47) Minor concerns: 5 studies provided outlier data in which caregivers were able to plan for a future with their unwell child. (23,24,34,39,49) Moderate concern: 7 studies were appraised to contribute methodological limitations. (14,20,21,34,40,41,45) High confidence: due to a high number of contributing studies concluding moderate concern regarding methodological limitations and only minor concerns regarding relevance, adequacy and coherence.…”

Section: Theme 2: Practicalities Of Caringmentioning

confidence: 99%

Caregiver experiences of paediatric inpatient cardiac services: A qualitative systematic review

Lozano

May

Clarkson

et al. 2020

European Journal of Cardiovascular Nursing

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Background: Advances in paediatric care have contributed to an increasing survival of children with complex heart disease. Yet, life-saving management demands prolonged inpatient admissions, which contribute to emotional and psychological distress for parents and other caregivers in a role of main custody. Aim: The purpose of this study was to identify, appraise and synthesise qualitative studies exploring caregivers’ experiences of paediatric inpatient cardiac services, generating an understanding of their needs in hospital and informing priorities for change in healthcare delivery. Methods: Searches were conducted in Medline, Allied and Complimentary Medicine Database, Cumulative Index of Nursing and Allied Health Literature, EMCARE, Scopus, PsychINFO, Proquest, OpenGrey and ETHOs from 2008–2019, reflecting recent advances in cardiac healthcare. Articles were selected using predetermined eligibility criteria dictating qualitative inquiry into caregiver perspectives whilst their child received hospital-based interventions for heart disease. All eligible studies underwent quality appraisal. Framework synthesis was used to analyse and summarise findings. Results: Twenty-seven studies involving 689 caregivers from 11 countries were included. Three overarching themes were identified: ‘emotional capacity to care’, ‘practicalities of caring’, and ‘the bigger picture of caring’. Conclusions: Through analysis and summary of qualitative primary research, this review captures the emotional challenges that caregivers face and practicalities of undertaking a caregiver role, whilst looking after their child with heart disease in hospital. The results widen the context of the caregiver role, encompassing the whole family unit beyond the hospital environment. This review exposes the impact of these challenges on caregiver competence, wellbeing and attachment to their unwell child, informing priorities for development of family-centred paediatric inpatient cardiac services.

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Experience of fathers of neonates with congenital heart disease in South Korea

Cited by 11 publications

References 23 publications

Parental emotional and hands‐on work—Experiences of parents with a newborn undergoing congenital heart surgery: A qualitative study

Parental emotional and hands‐on work—Experiences of parents with a newborn undergoing congenital heart surgery: A qualitative study

Congenital heart diseases: genetics, non-inherited risk factors, and signaling pathways

Caregiver experiences of paediatric inpatient cardiac services: A qualitative systematic review

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