Characteristics of prenatal counseling for extreme prematurity
In this scoping review, the following characteristics of prenatal counseling could be identified: a trend towards personalization, the importance of the parent-physician relationship, shared decision-making (SDM), the pitfall of physician bias, the role of emotions, anxiety and uncertainty, psychosocial factors, the importance of elucidating parental values, preferences and or goals, the role of religion, spirituality, and hope, and quality of life (QoL). For an overview of the characteristics and the number of included articles than mention these characteristics, see Figure 2.
A trend toward personalization
In the past decade, personalizing or individualizing prenatal counseling seems to have become increasingly important. Only two articles written before 2010 refer to personalizing certain aspects of prenatal counseling, namely, the prognosis and treatment options, and the general principles of prenatal counseling.16,17 After 2010 however, many of the included articles mention some form of personalization as important for prenatal counseling. The literature shows that personalization can pertain to different aspects of prenatal counseling, such as medical, parental, and informational aspects as well as aspects related to decision-making.6 Two of the included articles offer recommendations to enable personalization in practice.18,19 In an article written by parents of extremely premature infants, one of the ten recommendations for healthcare providers is to have a personalized approach.20
Parental values, preferences and goals
Like personalization, parental values seem to have become increasingly important for prenatal counseling in the last ten years. After 2010, nearly all articles refer to parental values, preferences, and or goals. In the article by Staub et al., it is recommended to make prenatal counseling about values instead of abstract data.20Geurtzen et al. similarly recommend that “parents should be asked for their personal perspectives and values regarding outcome information”.5 Although the importance of parental values is recognized in theory, almost half of the physicians participating in the study by Edmonds et al. do not elucidate values in practice.21
Shared decision-making (SDM)
Many articles refer to SDM. However, conclusions about SDM in relation to prenatal counseling are divergent and changing over time. In 1998, Martinez et al. show that physicians do mostly not prefer parents to have any role in decision-making.14 Over time, this tendency seems to have changed. In 2005, for example, Bastek et al. show that 77 percent of the neonatologists participating in their study prefer joint decision-making with the parent(s).22Moreover, in a study by Geurtzen et al. in 2018, 80 percent of the parents felt they were involved in decision-making.23Another article shows, however, that many physicians do not exactly know what SDM means.6 Zupancic et al. show that physicians find it hard to identify parental decision-making preferences: they do mostly not know whether parents want SDM or decision-making autonomy without any physician interference.24
Parent-physician relationship
Often, it is referred to the significance of the parent-physician relationship for good quality prenatal counseling. Ruthford et al. refer to the relationship as a “partnership”.25 In the literature, the importance of trust is often mentioned in this regard.24-26 The parent-physician relationship is considered to be of more importance than the actual content of the prenatal counseling consultation. The systematic review by Kharrat et al. reaches a similar conclusion: “[The] quality of the antenatal consultation is not purely about information content, but also the manner in which it is provided”.27
Physician bias
In several articles, physician bias is explored along with the question how this can complicate the provision of information to parents in prenatal counseling. Studies have shown possible effects on prenatal counseling of physician bias towards parental socioeconomic status, sociodemographic characteristics, and the desiredness of the pregnancy.28-30 Also Harrison warns about physician bias with regard to motives for providing active care.31 The literature generally discusses physician bias as a possible detraction from the quality of information provision and/or the quality of the prenatal counseling consultation itself.
Quality of life (QoL)
Many articles mention QoL, even if there is no agreement in the included body of literature on whether, and if so how to incorporate it in prenatal counseling. Furthermore, it is not always specified what is meant by QoL: information on what is known regarding future QoL in premature infants and families, or a conversation to search for parental views and values regarding a ‘good’ QoL. Harrison pleads against discussing QoL studies in prenatal counseling because of the ambiguity of such research.31 Other authors claim, by contrast, that discussing QoL is important.18,19 Research in one article shows that physicians do not only discuss the QoL of the infant in prenatal counseling, but also that of the mom and or family.32
Psychosocial factors
Non-medical, psychosocial factors are also considered in the literature to be of importance for prenatal counseling. One of the included articles explicitly explores whether the social context of parents should matter for decision-making in prenatal counseling. The authors conclude that it should, even when this results in more directive counseling.33 Janvier et al. however, mention in their article that some physicians may be hesitant to speak about non-medical, psychosocial topics in prenatal counseling.34 Bastek et al. also found much variability in the extent to and way in which physicians discuss social factors in prenatal counseling.22
Religion, spirituality, and hope
Religion and spirituality play a role in prenatal counseling. This is one of the main conclusions of both the included systematic reviews.27,35 In addition to religion and spirituality, hope seems to be of major importance. Although hope is of significant value for the parent(s), physicians prefer to be “objective” and avoid giving “false hope”.36,37Research by Roscigno et al. shows that physicians and parents have different views of hope. The authors maintain, however, that “it is possible for parents to have both a realistic understanding of the prognosis, even when it seems grim, and simultaneously maintain hope”.38
Emotions and anxiety
In the literature, emotions, anxiety, and uncertainty are said to influence prenatal counseling. The emotional state of parents is discussed in two ways. On the one hand, emotion is described as a factor blurring rationality in decision-making and information processing. Anxiety, for example, is said to negatively influence the quality of recall of the counseling conversation and to imply limited ability to gather information.24 On the other hand, the positive side of parental emotions is stressed in the literature. Emotions can be the driving force for parents to make decisions, help to elucidate values, or serve as a basis for building a strong parent-physician relationship.18,19
Uncertainty
Uncertainty and how this influences prenatal counseling is also discussed in two ways. On the one hand, there is uncertainty about the prognosis, possible outcomes, the overall situation and or the treatment decision.16,34,39 On the other hand, uncertainty itself is a topic of discussion in prenatal counseling.6,16,32 Yet, a simulation study by Edmonds et al. shows that only 42 percent of physicians discussed uncertainties.21 Another study by Edmonds et al. finds that many physicians experience communicating uncertainty as challenging.40 In general, there seems to be agreement in the literature about the importance of addressing uncertainty in prenatal counseling: it is inevitable, so it should better be acknowledged.
DISCUSSION
Parental values, uncertainty, SDM, and emotions are most mentioned in the literature. Also, a trend in time seems to be personalization: to adjust the counseling to the parents being counseled, so that it optimally fits the them and the yet unborn infant. Some of the identified characteristics tally with personalization. For example, elucidating parental values might lead to adjustments in the informational content of counseling and eventual recommendations about treatment options to best fit the parents. The same goes for parental views of QoL. Parents can be approached differently according to their personal views of QoL and disabilities, and physicians can adjust treatment recommendations to parental beliefs. Personalizing prenatal counseling works best if the counseling physician knows who the parents are and what it is that they value most in life. This can only be achieved within a strong parent-physician relationship.
Other identified characteristics however, may be in tension with personalization. In one article, for example, it is suggested thatinstead of SDM, personalized or individualized decision-making may be better suited to reach parental decision-making preferences.18 These authors plead against SDM since parents should be allowed to defer the final decision to the doctor. However, this apparent tension seems to depend upon how SDM is interpreted. When SDM is interpreted as if the eventual decision must always be shared by the parents and the physician, there can indeed be tension with personalization. Nonetheless, this depends upon interpretation: as, for example, Stiggelbout et al. describe in the last step of their SDM model, the eventual decision may be made by the parents, the physician, or both, according to parental preferences – incorporated as such in, for example, the Dutch counseling recommendations.41,42 They emphasize that physicians who are asked to make treatment decisions alone must still take into account parental values.6 Interpreting SDM this way, it can be compatible with personalization.
Other tensions may exist as well. Physician bias, for example, might endanger personalization and influence the way physicians interpret parental values. How can we ensure that adjustments in prenatal counseling are prompted by family characteristics instead of physician bias about those characteristics? Also, what if anxious parents decide that they do not want to hear any painful information about their unborn infant and her future? Maybe, certain informational content justhas to be shared, whether it fits the parents or not. Furthermore, the hesitancy of physicians to speak about non-medical topics and values might be detrimental to personalization: if personalization is preferred, physicians have to be prepared to speak about psychosocial factors when parents feel a need to do so.
The wish for personalization is based upon common sense. Personalization includes physicians sharing prognostic information that pertains to the specific child and her surroundings. Current literature provides good theoretical frameworks and grounds for preferring personalization in prenatal counseling for extreme prematurity.18,42 Yet, it has not yet been extensively and qualitatively explored with parents. Although qualitative research has been conducted on parents’ perspectives on prenatal counseling, none has been done specifically on personalization and on how to personalize in practice. Given the theoretical preference for personalization, this seems to be a major research gap. Also, personalizing prenatal counseling can have different meanings: a personalized prognosis, a personalized relationship with the healthcare team, an overall personalized approach to the parent(s) by taking into account their values, preferences and or goals e.g.. More research should be done on what aspects of prenatal counseling should be personalized. Furthermore, personalization as we know it in other fields asks for specification for the field of extreme prematurity: how to resolve potential conflicts between what best fits the parent(s) and what best fits the unborn infant? Similarly, there may be conflict between what best fits the pregnant woman and the eventual other parent. Concerning this last issue, it is worth mentioning that no current studies pay extensive attention for the role of the partner of the pregnant woman in prenatal counseling.
This study is subject to certain limitations. First, it is possible that we missed gray literature or important literature that was written in other languages than English. Second, since the majority of included studies has been conducted in the USA, and or has been written by American researchers, there might be cultural bias in this article. Although Canadian and Dutch perspectives are also well-represented, we know little of how prenatal counseling is practiced in the rest of the world. Third, it could be that the same characteristics appear in many of the articles because of cross-referencing in the included body of literature. Moreover, many included articles and studies were written or conducted by the same researchers. Nevertheless, similar topics have arisen in several independent qualitative interview studies with parents, and simulation studies have shown similar tendencies among physicians, which does provide some scientific validity. Our decision to exclude the articles that were included in the 2 systematic reviews could be a limitation; we could have missed certain characteristics. However, we are convinced that the systematic reviews are of high quality and that their results represent the most important findings of the articles that are therein included.