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.