Opportunities to enhance parental well-being during prenatal counseling for congenital heart disease

Tacy, Theresa A.; Kasparian, Nadine A.; Karnik, Ruchika; Geiger, Miwa; Sood, Erica

doi:10.1016/j.semperi.2022.151587

Cited by 17 publications

(9 citation statements)

References 76 publications

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“…The potential emotional impact of delivering congenital anomaly diagnoses on healthcare professionals should also be considered. These professionals have been reported to suffer from burnout and compassion fatigue (Cohen et al., 2020; Tacy et al., 2022), which could explain the negative interactions that some parents reported. Thus, professionals may benefit from access to regular supervision or reflective practice to support their own well‐being and self‐awareness.…”

Section: Discussionmentioning

confidence: 99%

“…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: Discussionmentioning

confidence: 99%

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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“…Receiving a diagnosis of fetal CHD is stressful and often traumatizing [69][70][71], and this can further impact outcomes for the fetus and family [72,73]. There has been an effort to identify ways to modify parental stress with empathetic counseling [74,75] and to better understand healthy coping mechanisms by studying parental reactions and perceptions of their experiences before and after the birth of their child with CHD [76 & ,77].…”

Section: Counselingmentioning

confidence: 99%

Cardiac problems in the fetus: a review for pediatric providers

Paul

Cohen

Geiger

2023

Current Opinion in Pediatrics

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Purpose of review The aim of this study was to provide pediatric providers with a review of the diagnosis and management of fetal cardiac disease in the current era. Recent findings Prenatal detection of congenital heart disease (CHD) has improved but is still imperfect. In experienced hands, fetal echocardiography can detect severe CHD as early as the first trimester and a majority of more subtle conditions in the second and third trimesters. Beyond detection, a prenatal diagnosis allows for lesion-specific counseling for families as well as for development of a multidisciplinary perinatal management plan, which may involve in-utero treatment. Given the diversity of cardiac diagnoses and the rarity of some, collaborative multicenter fetal cardiac research has gained momentum in recent years. Summary Accurate diagnosis of fetal cardiac disease allows for appropriate counseling, pregnancy and delivery planning, and optimization of immediate neonatal care. There is potential for improving fetal CHD detection rates. Fetal interventions are available for certain conditions, and fetal and pediatric cardiac centers have developed management plans specific to the expected postnatal physiology.

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“…Furthermore, the condition is associated with extra-cardiac challenges including neurodevelopmental deficits and psychological challenges, as well as a host of other organ system deficits with continuing needs for life-long care [ 5 ]. Conveying to expectant parents a comprehensive understanding of SVCHD in a sensitive, compassionate, and effective manner can be a challenge [ 6 ].…”

Section: Introductionmentioning

confidence: 99%

Parental Impressions and Perspectives of Efficacy in Prenatal Counseling for Single Ventricle Congenital Heart Disease

Houlihan,

Combs,

Smith

et al. 2023

Pediatr Cardiol

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Although commonly performed, optimal techniques, strategies, and content to achieve the most effective prenatal counseling have not been explored. We investigate the efficacy of prenatal counseling via survey feedback of parents of children with prenatally diagnosed single ventricle. Grades of counseling using a Likert scale (1–5) were solicited to assess: (1) overall impression of quantity of counseling, (2) explanation of the heart defect, (3) preparation for heart surgery, (4) preparation for hospital course and care, (5) preparation for complications and outcomes of a Fontan circulation, and (6) preparation for neurological, school-related, or behavioral problems. Impressions were solicited concerning specific providers. A comprehensive fetal counseling score was calculated for each participant. Burden of care including length of hospitalization was explored as impacting prenatal counseling grades. There were 59 survey respondents. Average age of the children at the time of survey was 4.6 ± 3.3 years (range 1–10 years). Highest grades were for explanation of the heart condition, with lowest grades for preparation for neurological, school-related, or behavioral problems. Cardiac surgeon received the highest with social worker lowest grade for provider. Negative correlation was found between the composite fetal counseling score and parental recollection of length of hospitalization (Pearson r = − 0.357, p < 0.01). Prenatal counseling for neurological, school-related, and behavioral problems in single ventricle is deficient. Further studies analyzing prenatal counseling techniques and content can help improve upon the delivery of this important aspect of prenatal care.

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Opportunities to enhance parental well-being during prenatal counseling for congenital heart disease

Cited by 17 publications

References 76 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

Cardiac problems in the fetus: a review for pediatric providers

Parental Impressions and Perspectives of Efficacy in Prenatal Counseling for Single Ventricle Congenital Heart Disease

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