Factors associated with decision‐making preferences among parents of infants in neonatal intensive care

Abstract

Shared decision-making (SDM) is the accepted standard for medical decision-making. It is a model that explicitly values input from both the clinical team and the patient or family. Patients and their surrogates vary in their preferences for participation in medical decision-making (1). Families in the neonatal intensive care unit (NICU) demonstrate a wide range of preferred involvement in the SDM process. Little is known about which parental characteristics may influence these differences in decision-making preferences among parents of infants in the NICU. We designed a survey study to describe how decisional characteristics influence decisionmaking preferences among parents of NICU patients. Previously published work showed that decisional characteristics were associated with decision-making preferences (e.g. for urgent decisions, NICU parents preferred medical team-centred decision-making) (2,3). Here, we sought to understand how parental factors may account for differences in decision-making preferences. We asked parents of NICU infants (N = 136) at three sites about their preferences for parentcentred vs. medical team-centred decision-making for 16 distinct decisions. Using mixed effects logistic regression, we modelled the probability of a parent preferring to retain decision-making control using decisional characteristics (e.g. urgency or familiarity) and parental factors (e.g. household income) as predictors. First, we examined whether there were baseline differences across parents in decision-making preferences (e.g. whether certain parents tended to want to defer to the physician while others tended to want to retain decisional control across all decisions). Second, we examined whether the association between decisional characteristics and decision-making preferences differed across parents (e.g. whether for some parents a decisional factor, such as familiarity, might be an important contributor to their decision-making preferences). We then assessed whether parental factors (e.g. household income) could explain these differences. We evaluated whether parental factors interacted with decisional characteristics to account for heterogeneity of parental decision-making preferences and the relationship between decisional characteristics and parental preferences —that is, whether certain decisional characteristics were more important to certain parents. We adopted the generalised linear mixed modelling (GLMM) framework rather than the generalised estimating equations (GEE) approach we used previously (2) because GLMM includes the modelling of both overall and parent-specific effects, whereas GEE focuses only on modelling effects across all parents. A threshold of a = 0.05 was selected. Two parental factors influenced decisionmaking preferences: having other children was associated with preference for parent-centred decision-making, and higher income was associated with preference for medical team-centred decision-making. We then assessed for interactions between parental and decisional factors that related to decision-making preferences. Parents with other children had a stronger preference for parent-centred decision-making when a decision was more familiar. Parents with higher household income had a stronger preference for medical team-centred decisionmaking when a decision required greater clinical expertise (Table 1). First, we consider why parents with other children more strongly wanted to retain control over decisions that were more familiar. This may not be surprising because the differences in decision-making related to having parenting experience would likely also be the areas in which they are familiar. This is also consistent with work that suggests parents of former premature babies may choose more aggressive curative interventions than parents of former term babies (4). Decisional burden is likely underappreciated and the fear of it may influence new and experienced parents differently (5). The converse may also be instructive: when decisions are not familiar, parenting experience no longer resulted in a preference to retain control. Experienced parents may be more likely than first time parents to want to retain control over those decisions they are more familiar with (e.g. feeding-related decisions). Conversely, experienced parents may be more likely to be indistinguishable from first