Abstract
Prenatal counseling practices at the limits of viability do vary, and constructing a counseling framework based on guidelines, professional and parental preferences, might achieve more homogeneity. We aimed to gain insight into professionals’ preferences on three domains of counseling, particularly content, organization, and decision making and their influencing factors. A qualitative, nationwide in-depth exploration among Dutch perinatal professionals by semi-structured interviews in focus groups was performed. Regarding content of prenatal counseling, preparing parents on the short-term situation (delivery room care) and revealing their perspectives on “quality of life” were considered important. Parents should be informed on the kind of decision, on the difficulty of individual outcome predictions, on survival and mortality figures, short- and long-term morbidity, and the burden of hospitalization. For organization, the making of and compliance with agreements between professionals may promote joint counseling by neonatologists and obstetricians. Supportive materials were considered useful but only when up-to-date, in addition to the discussion and with opportunity for personalization. Regarding decision making, it is not always clear to parents that a prenatal decision needs to be made and they can participate, influencing factors could be, e.g., unclear language, directive counseling, overload of information, and an immediate delivery. There is limited familiarity with shared decision making although it is the preferred model.Conclusion: This study gained insight into preferred content, organization, and decision making of prenatal counseling at the limits of viability and their influencing factors from a professionals’ perspective.What is Known:• Heterogeneity in prenatal counseling at the limits of viability exists• Differences between preferred counseling and actual practice also existsWhat is New:• Insight into preferred content, organization, and decision making of prenatal periviability counseling and its influencing factors from a professionals’ perspective. Results should be taken into account when performing counseling.• Particularly the understanding of true shared decision making needs to be improved. Furthermore, implementation of shared decision making in daily practice needs more attention.
Highlights
This study aims to gain insight into preferred content, organization, and decision making of prenatal counseling and their influencing factors from a professionals’ point of view
We performed a qualitative study among Dutch perinatal professionals using semi-structured focus group interviews to explore in-depth the preferences in prenatal counseling
Prenatal counseling at the limits of viability is an important but difficult task for perinatal professionals
Summary
We performed a qualitative study among Dutch perinatal professionals using semi-structured focus group interviews to explore in-depth the preferences in prenatal counseling. This study is part of the Dutch PreCo study (Prenatal Counseling in extreme Prematurity), which evaluates counseling at the limits of viability among perinatal professionals and parents in order to construct a framework. This study was initiated when the Dutch guideline for treatment at the limits of viability was changed in 2010 (clinicaltrials.gov NCT02782650 [42] & NCT02782637 [43]). Prenatal counseling at the limits of viability is an important but difficult task for perinatal professionals. Opinions on how to perform prenatal counseling diverge among individual professionals [21, 22, 28]. Since the outcome of counseling has major impact on life or death decisions, practice variation is unwanted when it is not based on fetal or parental characteristics
Published Version
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