Modifiers of stress related to timing of diagnosis in parents of children with complex congenital heart disease

Pinto, Nelangi M.; Weng, Cindy; Sheng, Xiaoming; Simon, Kimberly; Byrne, Janice B.; Miller, Thomas L.; Puchalski, Michael D.

doi:10.3109/14767058.2015.1125465

Cited by 19 publications

(29 citation statements)

References 24 publications

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“…This observation could be an indication that targets for intervention should be anxiety more than depression. 11 In a small study by Brosig et al, 9 higher levels of distress was found 6 months after birth in parents of children with a prenatal diagnosis of severe CHD compared to those with a postnatal diagnosis and normal controls. We did not find a similar difference but a lower satisfaction with life, and a low level of sense of coherence in the prenatal group was recorded.…”

Section: Discussionmentioning

confidence: 94%

“…4,5 A postnatal diagnosis is also associated with parental distress and previous studies report increased, decreased, or no difference in parental psychological distress when CHD has been prenatally diagnosed as compared to a postnatal diagnosis. 3,[9][10][11][12] Furthermore, there is lack of knowledge about potential indicators that could help healthcare professionals identify individuals at increased risk of developing psychological distress regardless of when the diagnosis is made.…”

Section: Discussionmentioning

confidence: 99%

“…It can explain how individuals, regardless of distressing circumstances and hardship, remain well. 8 Studies on the impact of prenatal versus postnatal diagnosis have shown conflicting results regarding psychological distress in parents of children with CHD, 3,[9][10][11][12] and sense of coherence has not been extensively studied in this context.…”

mentioning

confidence: 99%

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Parental reactions, distress, and sense of coherence after prenatal versus postnatal diagnosis of complex congenital heart disease

et al. 2019

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Introduction:A diagnosis of congenital heart disease (CHD) in offspring triggers psychological distress in parents. Results of previous studies have been inconsistent regarding the psychological impact of a prenatal versus a postnatal diagnosis. The aim of this study was to evaluate the influence of the time of diagnosis on levels of parental distress.Methods:Pregnant women and their partners with a fetus diagnosed with complex CHD, parents of children with postnatally diagnosed CHD, and pregnant women and their partners with uncomplicated pregnancies were invited to participate. Data were collected during pregnancy and 2–6 months after delivery using the Hospital Anxiety and Depression Scale, sense of coherence, life satisfaction, and Dyadic Adjustment Scale.Results:During pregnancy, the prenatal group scored lower sense of coherence compared to controls (p=0.044). Postnatally the prenatal group scored lower on sense of coherence compared to the postnatal group and controls (p=0.001; p=0.001). Postnatally, the prenatal and postnatal groups had higher levels of anxiety compared to controls (p=0.025; p=0.0003). Life satisfaction was lower in the prenatal group compared to that in the postnatal group and in controls (p=0.000; p=0.0004).Conclusion:Parents with a prenatal diagnosis of CHD in offspring report a low sense of coherence already during pregnancy which decreased further at follow-up. The same group reported a lower satisfaction with life compared to parents of a child with postnatal diagnosis of CHD and parents of a healthy child. This motivates further efforts to improve counselling and support during pregnancy and for parents after a prenatal diagnosis.

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Section: Discussionmentioning

confidence: 94%

Section: Discussionmentioning

confidence: 99%

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Parental reactions, distress, and sense of coherence after prenatal versus postnatal diagnosis of complex congenital heart disease

et al. 2019

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“…Studies on parental stress in both cardiac and non-cardiac populations have shown that mothers and fathers perceive stress and react to stressors differently. 26,32,37,[43][44][45][46][47][48][49] The majority of research has shown that mothers score significantly higher on stress and anxiety measures. 9,17,26,46 For parents of children with CHD, mothers have been shown to have significantly higher distress, anxiety, depression, and somatisation compared with fathers.…”

Section: Sexmentioning

confidence: 99%

Parental stress and resilience in CHD: a new frontier for health disparities research

Lisanti

2018

Cardiol Young

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Parental stress is a universal experience for parents who have children diagnosed with CHD and has been studied within the context of the child's illness, but not through a broader health disparity lens. This paper provides a thorough synthesis of the current literature on parental stress addressing disparities in parents of children with CHD. Several theories and models from within this literature are described and a new comprehensive framework, the Parental Stress and Resilience in CHD Model, is presented. Future research and clinical implications are discussed.

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“…Qualitatively, similar themes emerged for both groups around anger, fear, disbelief and grief. The BSI was also used to explore the association of timing of diagnosis with parental stress and modifiers of this relationship in another more recent study (Pinto et al, 2016); conversely, parents of prenatally diagnosed infants with CHD were found to have lower anxiety and stress than those diagnosed postnatally after adjusting for severity.…”

Section: Introductionmentioning

confidence: 99%

Parents’ experiences of receiving an antenatal versus postnatal diagnosis of complex congenital heart disease

Reid

Gaskin

2018

Nursing Children and Young People

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Aim: To explore parents' experiences at the time of diagnosis of complex congenital heart disease (CHD) for their infant, and to compare whether experiences differ when receiving an antenatal versus postnatal diagnosis. Background: The time point at which parents receive a diagnosis of CHD has changed over the years due in part to advancements in fetal ultrasound; however, CHD still remains undiscovered until after birth in some cases. The psychological impact of time of diagnosis on parents' experiences has not been well researched. Method: Descriptive and thematic analysis of primary mixed qualitative and quantitative data, collected during 2012-2013, from an online survey of parents (n=28) of infants who had undergone stage one surgery for a functionally univentricular heart. Findings: Four themes emerged: parents' understanding of the condition, parents' feelings at the time of diagnosis, sources of support and sources of additional information. Conclusion: There are implications for practice in terms of who provides the diagnosis and more importantly how well this is explained. Professionals need to assess parents' emotional status, information needs and level of understanding irrespective of time of diagnosis, so that support is individualised, sensitive and time appropriate.

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Modifiers of stress related to timing of diagnosis in parents of children with complex congenital heart disease

Cited by 19 publications

References 24 publications

Parental reactions, distress, and sense of coherence after prenatal versus postnatal diagnosis of complex congenital heart disease

Parental reactions, distress, and sense of coherence after prenatal versus postnatal diagnosis of complex congenital heart disease

Parental stress and resilience in CHD: a new frontier for health disparities research

Parents’ experiences of receiving an antenatal versus postnatal diagnosis of complex congenital heart disease

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