Professionals’ preferences in prenatal counseling at the limits of viability: a nationwide qualitative Dutch study

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 exists What 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.

A qualitative study on the voluntariness of counselling and testing for HIV amongst antenatal clinic attendees: do women have a choice?

“…Nursing officers’ experiences showed the importance of listening to, and respecting antenatal clinic attendees’views, in order to enhance mutual trust. This finding concurs with other studies which showed that a neutral counsellor who allows clients to make their own decisions is the preferred approach in prenatal counselling [ 20 ].…”

When should intensive care be provided for the extremely preterm infants born at the margin of viability? A survey of Australasian parents and clinicians

“…Similar to other studies, 12,13 most clinicians agreed that treatment will be guided by parental wishes when there was uncertainty about when to provide neonatal IC. Mills et al 14 found that 94% of clinicians would be prepared to withhold resuscitation on parents' request.…”

“…Similar to other studies, 12,13 most clinicians agreed that treatment will be guided by parental wishes when there was uncertainty about when to provide neonatal IC. Mills et al 14 .…”

“…found that 94% of clinicians would be prepared to withhold resuscitation on parents' request. Although some parents preferred to relinquish decision‐making autonomy, 15 others prefer shared decision‐making 12,16 . From this survey, more than half of the parents acknowledged that the information about survival and major disability given is important when making a decision about their babies.…”

Preferred prenatal counselling at the limits of viability: a survey among Dutch perinatal professionals

“…This first study on prenatal counselling in the Netherlands revealed differences between preferred and current counselling, and between obstetricians and neonatologists, suggesting a potential for improvement. Further studies looking into the barriers of preferred prenatal counselling [ 49 ] could be used to make improvements. Also, preferences of parents will be investigated.…”