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Andersons pediatric cardiology 274

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Supporting Families—Practical Considerations Physicians must have an awareness of the downfalls of fetal echocardiography including which associated lesions can be missed or overdiagnosed and what the likelihood is of a postnatal change in the diagnosis that would have major implications for outcome or management strategy Physicians giving counseling must have an understanding that the outcomes for a fetal diagnosis cannot be extrapolated from surgical series or postnatal experience.45 Fetal CHD generally has worse outcomes than postnatal or surgical series, as there are higher rates of extracardiac and chromosomal anomalies, some conditions are associated with intrauterine death, and postnatal series often have lower ascertainment of cases that died before transfer to a cardiac center or in whom palliative care was chosen.46 Furthermore, fetal CHD may progress, and the potential for progression should be considered and discussed especially if it importantly changes the prenatal and postnatal outcome and management options Counselors should be experienced in understanding the unique aspects of prenatal counseling, including the implications of multiple pregnancies on parental options for termination of pregnancy, including the option of selective termination, delivery type and timing, and the risk to the co-twin (e.g., monochorionic twin pregnancies) in the setting of intrauterine death of a fetus with CHD or where there is a need for earlier delivery They should be aware of the law regarding options for and timing of termination of pregnancy in the region where they practice Prior to the Fetal Echo Screening obstetric personnel should be encouraged to make prompt referrals when a suspicion of CHD has been identified on fetal ultrasound screening It is important to expedite appointments for fetal echocardiography when these referrals are made This will limit the period of anxious uncertainty faced by parents following referral, allow more time for other testing and to consider termination of pregnancy, and to prepare and plan adequately for the delivery of a baby with CHD Referring physicians should inform the parents that CHD is suspected—this enables more effective counseling, as the patient is better prepared to receive bad news Referring physicians should refrain from detailing an exact diagnosis unless there is a high degree of certainty Prior to performing a fetal echocardiogram, the patient should receive an explanation of the purpose of the scan and that the scan will likely be relatively lengthy, with a full explanation of the findings to be expected at the end of the study Recommended Counseling Style Counselors should deliver information in an empathetic and caring manner They should take cues from parents about the level of information they require Parents who feel rushed do not generally feel that their physician is showing compassion Physicians should allow time to digest the information, make use of silence and pauses, allow breaks to take place as required, encourage couples to ask questions, and to ensure the couple have developed a full understanding before making important decisions about the pregnancy or postnatal management strategy It is important to acknowledge the emotional stress the couple is experiencing and the emotions they are feeling Phrases such as “I know this is hard” and “I know this isn't what you expected” help acknowledge what the parent is going through and makes them feel listened to and understood It is important that the information given is understandable; medical jargon should be avoided and the pathology and outcomes explained in layman's terms Repetition is an important tool to aid parent understanding The parents should be encouraged to express their fears Where possible, appropriate hope should be offered If there are uncertainties in the diagnosis or expected outcome, these should be honestly discussed Counseling should be nondirective and a paternalistic approach should be avoided Counselors should recognize their own biases and aim to temper them as much as possible It is important for couples to understand that whatever decision they make; they have the support of the care team The counselor should aim to tailor the content of the discussion according to the individual patient, taking account of their level of education, socioeconomic and cultural status, as well as their personal convictions and beliefs However, making assumptions regarding what a couple would or would not accept or consider based on socioeconomic status, ethnicity, and religions should also be avoided Initial Counseling Session Ideally, counseling should be performed by both a trained fetal cardiologist and also a fetal medicine specialist It is very helpful to have a nurse coordinator or midwife present to provide support for the patient, both during the consultation and following Patients should be encouraged to bring along their partner and/or a friend or relative Counseling should take place in a separate room from the ultrasound machine and exam table It is crucial that there is adequate time available to deliver the necessary information and interruptions should be discouraged Supportive material, such as diagrams showing the heart condition, heart models, and literature on the condition specifically designed for parents are extremely helpful Emotional responses are to be expected and it is sensible to be prepared with a supply of tissues If the parents are not fluent in the language used for counseling, then it is crucial to offer an interpreter to facilitate parent understanding In our experience, the offer of follow-up appointments and provision of points of contact for subsequent questions also help parents to feel adequately informed and supported in understanding their baby's condition

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