Emotional and cognitive experiences during the time of diagnosis and decision-making following a prenatal diagnosis: a qualitative study of males presented with congenital heart defect in the fetus carried by their pregnant partner

Carlsson, Tommy; Mattsson, Elisabet

doi:10.1186/s12884-017-1607-y

Cited by 23 publications

(33 citation statements)

References 53 publications

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“…Studies on psychological or social consequences of women’s partners have not been found. Carlsson et al interviewed expectant fathers of fetuses that were diagnosed with a congenital heart defect and found that fathers also experienced intense emotional shock and are at risk of not receiving adequate support, because they set their needs aside to support their partner [28].…”

Section: Discussionmentioning

confidence: 99%

Psychological and social consequences of non-invasive prenatal testing (NIPT): a scoping review

Labonté

Alsaid

Lang

et al. 2019

BMC Pregnancy Childbirth

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BackgroundGenomics-based noninvasive prenatal tests (NIPT) allow screening for chromosomal anomalies such as Down syndrome (trisomy 21). The technique uses cell-free fetal DNA (cffDNA) that circulates in the maternal blood and is detectable from 5 weeks of gestation onwards. Parents who choose to undergo this relatively new test (introduced in 2011) might be aware of its positive features (i.e. clinical safety and ease of use); however, they might be less aware of the required decisions and accompanying internal conflicts following a potential positive test result. To show the evidence on psychological and social consequences of the use of NIPT, we conducted a scoping review.MethodsWe systematically searched four electronic databases (MEDLINE (Ovid), Cochrane Library (Wiley), CINAHL (EBSCO) and PsychINFO (EBSCO)) for studies that investigated the psychological or social consequences of the use of NIPT by pregnant women or expecting parents. The search was limited to studies published between 2011 and August 8, 2018. We identified 2488 studies and, after removal of duplicates, screened 2007 titles and abstracts, and then assessed 99 articles in full text (both screenings were done independently in duplicate). We included 7 studies in our analysis.ResultsFive studies assessed anxiety, psychological distress and/or decisional regret among women with validated psychological tests like the Spielberger State Trait-Anxiety Inventory (STAI), the Pregnancy-Related Anxiety Questionnaire-Revised (PRAQ-R), the Kessler Psychological Distress Scale (K6) or the Decisional Regret Scale (DRS). Two studies assessed women’s experiences with and feelings after NIPT in interviews or focus groups. The included studies were heterogeneous in location, study setting, inclusion criteria, outcome assessment, and other characteristics.ConclusionsOnly few studies on psychological consequences of NIPT have been identified. The studies assessed only short-term psychological consequences of NIPT at baseline and/or after receiving the results or after giving birth. Studies show that short term anxiety decreased when women received negative NIPT results and that decisional regret was generally low. We could not identify studies on long term consequences of NIPT, as well as studies on women’s partners’ short and long term outcomes, nor on social consequences of NIPT.

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Section: Discussionmentioning

confidence: 99%

Psychological and social consequences of non-invasive prenatal testing (NIPT): a scoping review

Labonté

Alsaid

Lang

et al. 2019

BMC Pregnancy Childbirth

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“…Existing evidence suggests that fathers set their own needs aside to attend to the supportive needs of their pregnant partner whilst focusing on coming to a joint decision regarding whether to continue or terminate the pregnancy. 24 We were only able to recruit families who had chosen to con- Furthermore, the field of fetal medicine and treatment of congenital heart disease is a rapidly changing area and we cannot assume that for any pregnant women there will be unity in their views or experiences. Nonetheless, there is value in trying to elucidate the underpinnings of how these women made decisions during their pregnancy.…”

Section: Study Limitationsmentioning

confidence: 99%

The impact of prenatal counselling on mothers of surviving children with hypoplastic left heart syndrome: A qualitative interview study

Bertaud

Lloyd

Sharland

et al. 2020

Health Expectations

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Objective To explore the role of antenatal counselling in how parents make treatment decisions following an antenatal diagnosis of Hypoplastic Left Heart Syndrome (HLHS). Background Antenatal counselling is a critical part of patient management following a diagnosis of fetal congenital heart disease; however, there is a very limited evidence base examining how parents actually experience antenatal counselling and make decisions in this context. Methods Semi‐structured interviews were conducted with women who had received an antenatal diagnosis of HLHS. Interviews were digitally recorded, anonymised and transcribed verbatim. A thematic content analysis was performed using a constant comparative approach. Results Eight mothers of surviving children with HLHS were interviewed. Eight key themes emerged including new perspectives on how women receive antenatal counselling and how it affects their decision making. Three themes in particular are new to the literature: (a) Mothers of children with HLHS reported feelings of intense guilt that arose in the antenatal period around potentially causing the condition in their child. (b) For this group of women, recollections of perceived pessimism during antenatal counselling had a lasting impact. (c) Despite support from partners or extended family, women nevertheless experienced a strong sense that antenatal decision making was largely a ‘maternal’ responsibility. Conclusions When recounting their experiences of antenatal counselling, mothers of surviving children with HLHS offer new perspectives that can guide fetal cardiologists in how best to support their individual patients. Further research is needed to comprehensively understand the experience of prospective parents counselled for severe forms of fetal congenital heart disease.

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“…Previous studies report that fathers of children with CHD experience emotional stress, but try to hide their feelings to support others (Carlsson & Mattsson, 2018; Clark & Miles, 1999). We are unsure why few fathers participated in our study, considering it has been noted that parents of ill children do indeed express a need for social support, including fathers (Carlsson, Melander Marttala, et al, 2016; Jacobs et al., 2016), and that social support is predictor of family functioning (Tak & McCubbin, 2002).…”

Section: Discussionmentioning

confidence: 99%

“…Regardless whether the diagnosis is established prenatally or postnatally, parents experience considerable psychological distress at the time of diagnosis (Carlsson, Starke, & Mattsson, 2017; Carlsson & Mattsson, 2018; Lalor, Begley, & Galavan, 2009) and after the birth (Bratt et al., 2019). Treatment often entails advanced intensive care, prolonged hospital stays, and repeated cardiac interventions, involving further stressors (Kosta et al., 2015).…”

Section: Introductionmentioning

confidence: 99%

Peer support among parents of children with congenital heart defects: A qualitative analysis of written responses submitted via an online survey

Carlsson

Klarare

Mattsson

2020

Journal of Advanced Nursing

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Aim To explore experiences of peer support among parents of children with congenital heart defects. Design A study analysing written responses to open‐ended questions about peer support, collected via an online survey distributed in Sweden. Methods Respondents were recruited during 3 months in 2018 by means of convenience sampling, through ads via the Swedish foundation for families with children who have heart defects and two closed Facebook groups for peer support. An online survey containing open‐ended questions was distributed and responses were analysed with systematic text condensation. Results Peer support was grounded in a mutual understanding among parents and involved highly appreciated emotional support. Listening to the stories of peers meant an opportunity to gain useful insights about what life is like for parents of children with heart defects. Receiving and providing peer support was described as rewarding on a personal level. Negative aspects of peer support were also described, which sometimes led to psychological distress and withdrawal from peer support activities. Conclusion Peer support is emotionally relieving and appreciated among parents of children with congenital heart defects, who consider providing the support a rewarding responsibility. While peer support activities may have considerable benefits for individuals, it may also lead to psychological distress for some. Impact This study addressed peer support among parents of children with congenital heart defects. The main findings illustrate the potential impact peer support can have on individuals and calls attention to the experienced benefits related to peer support activities, while also providing some insights regarding potential negative aspects. The findings have relevance for nurses, midwives, and other health professionals working in settings providing care for these families.

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Emotional and cognitive experiences during the time of diagnosis and decision-making following a prenatal diagnosis: a qualitative study of males presented with congenital heart defect in the fetus carried by their pregnant partner

Cited by 23 publications

References 53 publications

Psychological and social consequences of non-invasive prenatal testing (NIPT): a scoping review

Psychological and social consequences of non-invasive prenatal testing (NIPT): a scoping review

The impact of prenatal counselling on mothers of surviving children with hypoplastic left heart syndrome: A qualitative interview study

Peer support among parents of children with congenital heart defects: A qualitative analysis of written responses submitted via an online survey

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