From Diagnosis to Birth

Askelsdóttir, Björk; Conroy, Sherrill; Rempel, Gwen R.

doi:10.1097/01.anc.0000342768.94734.23

Cited by 26 publications

(11 citation statements)

References 22 publications

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“…When the mothers were told that their child had CHD, the majority were initially in shock, hoped in vain for a misdiagnosis, and attempted to gain information regarding the CHD. These findings were consistent with previous reports from Western countries that pregnant women who discover congenital deformities in their unborn child experience shock regardless of the severity or curability of the malformation [ 20 , 21 ]. In a study investigating the experience of expectant mothers discovering fetal congenital deformities, it was difficult even for mothers who were professional nurses to accept the unexpected diagnosis [ 10 ].…”

Section: Discussionsupporting

confidence: 93%

The pregnancy experience of Korean mothers with a prenatal fetal diagnosis of congenital heart disease

Yun

Yoo

et al. 2018

BMC Pregnancy Childbirth

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BackgroundPrenatal diagnosis of fetal congenital heart disease (CHD) is becoming widely available but there is a lack of understanding on such expectant mothers’ experiences during pregnancy. This was the first study to investigate the pregnancy experience of Korean mothers with a prenatal fetal diagnosis of CHD.MethodsIn-depth interviews were conducted with 12 mothers regarding their child’s prenatal diagnosis of CHD and the adaptive processes during pregnancy. The data were transcribed and analyzed according to the grounded theory framework.ResultsWhen the diagnosis of fetal CHD was suspected, mothers desperately sought accurate information regarding CHD while hoping in vain for a misdiagnosis. When the definitive diagnosis was made, most pregnant women experienced psychological trauma and pain, framed in the stigma and burden of having an imperfect child. Provision of accurate health advice and emotional support by a multidisciplinary counseling team was crucial at this phase, forming recognition that CHD could be treated. When fetal movements were felt, mothers came to acknowledge the fetus as an independent being, and made their best efforts to protect the fetus from harmful external influences using traditional TaeKyo mindset and practices, which in turn, were helpful in restructuring the meaning of the pregnancy.ConclusionsMothers went through a dynamic process of adapting to the unexpected diagnosis of CHD, which was closely linked to being able to believe that their child could be treated. Early counseling with precise information on CHD, continuous provision of clear explanations on prognosis, sufficient emotional support, and well-designed prenatal education programs are the keys to an optimal outcome.

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Section: Discussionsupporting

confidence: 93%

The pregnancy experience of Korean mothers with a prenatal fetal diagnosis of congenital heart disease

Yun

Yoo

et al. 2018

BMC Pregnancy Childbirth

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“…Consequently, health professionals must recognize that the diagnosis may result in an increased risk of developing psychopathological symptoms for both expectant parents when the pregnancy is continued, and include both of them in their assessments of the need for psychosocial support. Following the diagnosis, expectant parents move from grief to preparation as the pregnancy progresses [ 51 ] and are concerned or worried about various issues [ 21 , 48 ]. In summary, the findings illustrate the importance of including both of the expectant parents in the health care planning of the postnatal situation, and the need for team-based efforts that address the worries of the postnatal situation expressed by the respondents.…”

Section: Discussionmentioning

confidence: 99%

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

Mattsson

2018

BMC Pregnancy Childbirth

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BackgroundExpectant fathers consider the second-trimester obstetric ultrasound examination as an important step towards parenthood, but are ill prepared for a detection of a fetal anomaly. Inductive research is scarce concerning their experiences and needs for support. Consequently, the aim of this study was to explore the emotional and cognitive experiences, during the time of diagnosis and decision-making, among males presented with congenital heart defect in the fetus carried by their pregnant partner.MethodsTwelve expectant fathers were consecutively recruited through two tertiary referral centers for fetal cardiology in Sweden, after they had been presented with a prenatal diagnosis of congenital heart defect in the fetus carried by their pregnant partner. The respondents were interviewed via telephone, and the interviews were analyzed using inductive qualitative content analysis.ResultsThe respondents experienced an intense emotional shock in connection with detection. However, they set their own needs aside to attend to the supportive needs of their pregnant partner, and stressed the importance of an informed joint decision regarding whether to continue or terminate the pregnancy. When terminating the pregnancy, they experienced a loss of a wanted child, an emotionally intense termination procedure, needs of support neglected by professionals, and worries about the risk of recurrence in future pregnancies. When continuing the pregnancy, they tried to keep a positive attitude about the coming birth, but were simultaneously worried about the postnatal situation.ConclusionsThe findings illustrate the importance of inclusive care and adequate follow-up routines for both expectant parents following a prenatal diagnosis. This includes the initial emotional shock, the decisional process, and depending on decision reached, the termination or continuation of the pregnancy. Expectant fathers presented with a fetal anomaly need adequate follow-up routines to address worries about risk of recurrence in future pregnancies and worries about the postnatal situation.

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“…The Internet is a known source of information and insight among parents to children with CHD [ 17 ], especially in connection with the time of diagnosis [ 18 ]. However, difficulties finding relevant and specific information have been acknowledged [ 19 , 20 ]. Parents in our study desired recommendations from health-care providers for relevant and adequate informational sources on the Internet.…”

Section: Discussionmentioning

confidence: 99%

“…Parents to children prenatally diagnosed with CHD move from grief to preparation for the future as the pregnancy progresses [ 20 ]. Consequently, caregivers need to take responsibility for the provision of antenatal education to these parents.…”

Section: Discussionmentioning

confidence: 99%

Information following a Diagnosis of Congenital Heart Defect: Experiences among Parents to Prenatally Diagnosed Children

et al. 2015

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BackgroundPrenatal screening of pregnant women in Sweden has improved the detection of major congenital heart defects (CHD). The aim was to explore parental experiences and need for information following a prenatal diagnosis of CHD.MethodsSemi-structured interviews conducted with six fathers and five mothers to seven prenatally diagnosed children. Data were analyzed through content analysis.ResultsThree themes and 9 categories emerged. Theme 1, Grasping the facts today while reflecting on the future, containing five categories: Difficulties sorting out information when in emotional chaos; Respectful information regarding termination of pregnancy; Early information is crucial; Understanding the facts regarding the anomaly; Preparing for the future. Theme 2, Personal contact with medical specialists who give honest and trustworthy information is valued, containing two categories: Trust in information received from medical specialists and Truth and honesty is valued. Theme 3, An overwhelming amount of information on the Internet, containing two categories: Difficulties in finding relevant information and Easy to focus on cases with a poor outcome when searching the Internet.ConclusionEarly and honest information in line with individual preferences is crucial to support the decisional process regarding whether to continue or terminate the pregnancy. The use of illustrations is recommended, as a complement to oral information, as it increases comprehension and satisfaction with obtained information. Furthermore, the overwhelming amount of information on the Internet calls for compilation of easily accessible and reliable information sources via the Internet.

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From Diagnosis to Birth

Cited by 26 publications

References 22 publications

The pregnancy experience of Korean mothers with a prenatal fetal diagnosis of congenital heart disease

The pregnancy experience of Korean mothers with a prenatal fetal diagnosis of congenital heart disease

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

Information following a Diagnosis of Congenital Heart Defect: Experiences among Parents to Prenatally Diagnosed Children

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