Decisional Satisfaction, Regret, and Conflict Among Parents of Infants with Neurologic Conditions

Abstract

Objective: To characterize decisional satisfaction, regret, and conflict among parents of critically ill infants with neurologic conditions.

Study design: In this prospective cohort study, we enrolled parents of infants with neurologic conditions in the intensive care unit (ICU). Hospital discharge surveys included the validated Family Satisfaction with the ICU (FS-ICU) decision making subscale, Decision Regret Scale (DRS), and Decisional Conflict Scale (DCS). We defined high satisfaction with decision making as an FS-ICU score ≥75, high decisional regret/conflict as DRS/DCS score >25, and within-couple disagreement as a difference of at least 25 points between scores.

Results: We enrolled 61 parents of 40 infants (n = 40 mothers, n = 21 fathers); 35 mothers and 15 fathers completed surveys. Most mothers reported high satisfaction with decision making (27 of 35; 77%) and low decision regret (28 of 35; 80%); 40% (14 of 35) reported high decisional conflict. Mothers and fathers reported higher decisional conflict in the domains of uncertainty and values clarity compared with the domain of effective decision making (Bonferroni-corrected P < .05). There were no differences in decision outcomes between paired mothers and fathers; however, within any given couple, there were numerous instances of disagreement (7 of 15 for decision regret and 5 of 15 for decisional conflict).

Conclusions: Many parents experience decisional conflict even if they ultimately have high satisfaction and low regret, underscoring the need for decision aids targeting uncertainty and values clarity. Couples frequently experience different levels of decisional regret and conflict.

Keywords: critical care; neonatology; neurology.

Figure 1.

The number of infants at each stage of the study. A total of 108 infants were eligible for enrollment during the study period. The parents of 80 infants were approached for enrollment and 61 parents of 40 infants were enrolled. The completed discharge surveys of 50 parents of 35 infants were analyzed.

Figure 2.

Distribution of maternal Family Satisfaction with the ICU decision-making subscale scores, Decision Regret Scale scores, and Decisional Conflict Scale scores at discharge. In these histograms, each bar represents the number of mothers whose decision-making scale scores fell within the corresponding 12.5-point interval. The majority of mothers report high satisfaction with decision-making (score ≥ 75), low decision regret (score ≤ 25), and low decisional conflict (score ≤ 25).

Figure 3.

Maternal Decisional Conflict Scale subscale scores at discharge. Boxes display the 25^th (lower boundary), 50^th (horizontal line), and 75^th (upper boundary) percentile values, and vertical lines extend from the box to the most extreme value within one-and-a-half times the interquartile range below or above the 25^th and 75^th quartiles, respectively. Outliers are denoted with a point. Like the overall score, subscale scores are considered to reflect high conflict if they are greater than 25. Mothers experienced the least decisional conflict related to making effective decisions and being informed. Mothers experienced significantly higher levels of decisional conflict related to support, uncertainty, and values clarity (Bonferroni-corrected p-values < 0.05).

Figure 4.

Distribution of paternal Family Satisfaction with the ICU decision-making subscale scores, Decision Regret Scale scores, and Decisional Conflict Scale scores at discharge. In these histograms, each bar represents the number of fathers whose decision-making scale scores fell within the corresponding 12.5-point interval. The majority of fathers report high satisfaction with decision-making (score ≥ 75) and low decision regret (score ≤ 25).

Figure 5.

Paternal Decisional Conflict Scale subscale scores at discharge. Boxes display the 25^th (lower boundary), 50^th (horizontal line), and 75^th (upper boundary) percentile values, and vertical lines extend from the box to the most extreme value within one-and-a-half times the interquartile range below or above the 25^th and 75^th quartiles, respectively. Outliers are denoted with a point. Like the overall score, subscale scores are considered to reflect high conflict if they are greater than 25. Fathers experienced less decisional conflict related to making effective decisions than they did related to uncertainty and values clarity (Bonferroni-corrected p-values < 0.05).

Figure 6.

Bland-Altman plots for maternal and paternal Family Satisfaction with the ICU decision-making subscale, Decision Regret Scale, and Decisional Conflict Scale scores at discharge. Although there were substantial differences in score within individual couples for all three surveys, there was not a significant difference in the average scores between mothers and fathers as a whole. There was one set of couples with identical average scores and differences between scores for decisional satisfaction (average scores 100, difference between scores 0) and two sets of couples with identical average scores and differences between scores for decision regret (average scores 12.5, difference between scores +25 and −25).

Figure 7.

Maternal and paternal Family Satisfaction with the ICU decision-making subscale scores were moderately positively correlated at discharge. Maternal and paternal Decision Regret Scale and Decisional Conflict Scale scores were not statistically significantly correlated.