The multidisciplinary fetal center: clinical expertise is only part of the experience

Abstract

Multidisciplinary foetal centres can provide a unified source of clinical expertise to women who are carrying a foetus with a suspected or identified congenital anomaly. Despite this diagnostic acumen, uncertainty is pervasive and patients seek support and additional information from a variety of other sources. This investigation is an important initial step in the evaluation of this emerging model of care.

The parental journey of fetal care: a systematic review and metasynthesis

“…11 Gaining understanding and feeling understood was also facilitated by HCPs providing written information and illustrations that parents could take home 5,6 and, perhaps most importantly, communicating in ways that felt tailored to parents as individuals (eg, their knowledge level, informational preferences, and values). 6,12,14,16,17 Parents felt understood when HCPs "knew their story," 11,12,14 respected their informational preferences, [6][7][8]15,17 and acknowledged and validated their experiences, needs, feelings, beliefs, and decisions. 5 −17 I just remember me and my husband were trying to figure out if what we were feeling was right or wrong, and [the HCP] came in.…”

“…She just kind of reiterated everything that we were thinking, so we didn't feel so bad about thinking the things that we were thinking. 12 Barriers to gaining understanding and feeling understood were experienced when parents perceived communication to be "cold." 6,7,14,15,17 Some voiced increased anxiety and arrested decision making as a result.…”

“…6,7,14,15,17 Some voiced increased anxiety and arrested decision making as a result. 9,12,15 For example, to decide whether to continue a pregnancy, most parents described needing to understand if their baby would have a "healthy" or "normal" life. To provide meaningful information to help parents understand and make this decision, HCPs needed to grasp what healthy and normal meant to these particular parents.…”

“…14 Other barriers to gaining understanding during the first fetal care center visit included HCPs not addressing informational inconsistencies (their information compared with referring provider or information online) 10,11,16 and not providing early connection to informational websites and social networks or support groups. [5][6][7][8]12,17 Gaining understanding and feeling understood were processes that evolved and were important to parents throughout the continuum of care. Consistent and compassionate communication with all HCPs (including nurses, sonographers, psychosocial professionals, and administrative staff) was an important facilitator to both gaining understanding and feeling understood.…”

“…They felt like "good parents" when HCPs guided them through the process Systematic Review and validated their choice. 12 However, HCPs struggled to respond to questions like "what would you do?" When HCPs avoided answering these questions, some parents felt disempowered and experience self-doubt, distrust, and arrested decision making.…”