Caring perceptions and experiences of fathers of children with congenital heart disease: A systematic review of qualitative evidence

Lin, Pei Jung; Liu, Yu Ting; Huang, Chin Hui; Huang, Shu He; Chen, Chi-Wen

doi:10.1111/ijn.12952

Cited by 8 publications

(4 citation statements)

References 27 publications

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“…Across studies, fathers were less likely to express their emotions due to gendered expectations to be strong. This finding was consistent across cultures and reflected previous research regarding fathers' wider experiences of their child's CHD (Gower et al., 2017; Lin et al., 2021).…”

Section: Discussionsupporting

confidence: 89%

“…Studies have explored parents' experiences of having a child with CHD, and systematic reviews have synthesized qualitative findings related to prenatal counselling practices (Tacy et al., 2022), psychosocial coping (Lumsden et al., 2019), fathers' perspectives (Lin et al., 2021), the wider familial impact (Jackson et al., 2015) and specific events, such as surgery (de Man et al., 2020; McMahon & Chang, 2020). However, as diagnosis is crucial in the parental experiences of CHD, this meta‐synthesis aimed to review and synthesize qualitative studies systematically to answer the following research question: what were parents' psychological experiences when they received their child's CHD diagnosis?…”

Section: Introductionmentioning

confidence: 99%

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Parents' experiences of receiving their child's diagnosis of congenital heart disease: A systematic review and meta‐synthesis of the qualitative literature

Dandy,

Wittkowski,

Murray

2023

British J Health Psychol

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PurposeThis systematic review aimed to synthesize qualitative research on parents' psychological experiences following their child's diagnosis of congenital heart disease (CHD).MethodsA systematic search of six electronic databases (CINAHL, Embase, MEDLINE, PsycINFO, PubMed and Web of Science) was completed, inclusive of all years up to May 2022. Any included articles were synthesized using thematic synthesis and appraised using the Critical Appraisal Skills Programme Qualitative Checklist.ResultsTwenty‐six articles were included. Four main themes, and 11 subthemes, emerged from the synthesis. Theme 1 (unpreparedness for the diagnosis) concerned parents' shock, guilt and anger regarding the diagnosis. Theme 2 (the overwhelming reality of CHD) described parental fear about decision‐making and the child's prognosis, and the influence of professionals on parents' well‐being. Theme 3 (mourning multiple losses) detailed parents' sadness at losing their envisioned pregnancy, birth and parenthood experiences. Theme 4 (redefining hopes to reach an acceptance of CHD) described parents' adjustment to the diagnosis.ConclusionsReceiving a child's CHD diagnosis was a uniquely challenging situation for parents. The findings provided insight into the emotions parents experienced and how they adjusted to the diagnosis psychologically. As parents' experiences were significantly influenced by their interactions with professionals, clinicians should offer compassion, validation and clear information throughout the diagnosis process.

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Section: Discussionsupporting

confidence: 89%

Section: Introductionmentioning

confidence: 99%

Parents' experiences of receiving their child's diagnosis of congenital heart disease: A systematic review and meta‐synthesis of the qualitative literature

Dandy,

Wittkowski,

Murray

2023

British J Health Psychol

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“…Parents with fewer resources for support psychosocially are more at risk of lower wellbeing over time [68]. Wider literature also supports our finding on gender differences in suffering experiences and subsequent coping methods, which is influenced by their role in family functioning, sociocultural expectations, and knowledge [69][70][71].…”

Section: Discussionsupporting

confidence: 82%

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

Watkins

Isichei

Gentles³

et al. 2022

Pediatr Cardiol

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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.

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“…Fathers report insufficient involvement in the entire process, and would like to see more inclusion, support, information, and higher group representation, especially those with children with a congenital heart defect. The father-child relationship is compromised by fathers being excluded from the process and the role they must assume [44][45][46]. The anxiety of fathers and the burden they feel with their role persist even after the birth of the child in the phase of numerous operations for severe heart defects [47].…”

Section: Discussionmentioning

confidence: 99%

Anxiety and Depression Levels in Parents after Counselling for Fetal Heart Disease

Erbas

Herrmann‐Lingen

Ostermayer

et al. 2023

JCM

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The progress in fetal cardiology allows for the early diagnosis of congenital heart defects, but there is still a lack of data on the psychological situation of parents expecting a child with a congenital heart defect. In this cross-sectional study, 77 parents (45 women and 32 men) expecting a child with a heart defect were interviewed with different questionnaires. The standardized Hospital Anxiety and Depression Scale (HADS) questionnaire was used to assess the psychological state of the parents. Various statistical procedures were performed to determine the prevalence, risk factors, and predictors of anxiety and depression. The prevalence for prenatal anxiety was 11.8% and for depressed mood 6.6%, whereas the postnatal prevalence was 25% for anxiety and 16.7% for depressed mood. The mother is influential in protecting against depression as a contact person (p = 0.035). Women were more affected by anxiety and depression than men (p = 0.036). A significant and positive correlation was observed between anxiety and depression before birth (ρ = 0.649, p < 0.001) and after birth (ρ = 0.808, p < 0.001). The level of education correlated negatively with depression (p = 0.016) and anxiety (p = 0.017) before birth. Significantly higher anxiety and depression scores were not observed among health and social workers (p = 0.084), first-time mothers (p = 0.190), and parents whose pregnancies were due to medical assistance (p = 0.051). Close collaboration between maternal-fetal care units, pediatric cardiologists and psychiatric/psychosomatic disciplinesis a possible strategy to reduce stress in parents. Therefore, an expert team of professionals, educating with understandable terms and sufficient knowledge about fetal heart disease in parenting counseling, is required. The support of affected parents can positively impact the treatment of the child and should be integrated into the daily routine of the clinic.

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Caring perceptions and experiences of fathers of children with congenital heart disease: A systematic review of qualitative evidence

Abstract: Aim: To identify fathers' perceptions and experiences of caring for their children with congenital heart disease.

Cited by 8 publications

References 27 publications

Parents' experiences of receiving their child's diagnosis of congenital heart disease: A systematic review and meta‐synthesis of the qualitative literature

Parents' experiences of receiving their child's diagnosis of congenital heart disease: A systematic review and meta‐synthesis of the qualitative literature

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

Anxiety and Depression Levels in Parents after Counselling for Fetal Heart Disease

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