Parent Preferences for Shared Decision-making in Acute Versus Chronic Illness

Discussion

This cross-sectional study found that parents of hospitalized children strongly prefer an active or collaborative role in SDM with their children’s doctors. This preference was irrespective of parent or child demographics, education, language (English or Spanish), financial hardship, previous exposure to the hospital setting, chronicity of the child’s condition, or parental perception of the child’s illness severity. Parents of chronically ill children deviate from this preference pattern when they perceive a high level of uncertainty surrounding their children’s illness by significantly preferring a passive role in SDM. Although further research is needed in this rapidly evolving area, inpatient clinicians should consider how uncertainty may influence decision-making for families of chronically ill children.

The degree to which parents prefer to engage in medical SDM with their children’s doctors may vary with the situation, driven by perceived information and perceived control.¹⁶ For the hospitalized patient, the information and control paradigms are heavily weighted toward the providers. Considering this and the inherent stress and uncertainty of having a child hospitalized, it might be reasonable to assume that parents prefer a passive role in SDM. However, the results of this study illustrate that parents of hospitalized children prefer to be actively or collaboratively involved in their children’s medical decisions. Our study is consistent with SDM preferences of PICU parents studied by Madrigal et al,¹⁵ with the additional finding that degree of financial hardship and chronicity of illness are not associated with a particular SDM preference.

In the United States, ∼20% of children are reported as having a chronic medical condition, and this number is increasing.^30,31 Hospitalization rates, health care costs, and resource use for these children are also increasing.³² We found that parents of hospitalized, chronically ill children perceive a higher severity of illness and level of uncertainty compared with other parents. Overall, parents of chronically ill children preferred an active or collaborative role in SDM, irrespective of their previous exposure to the hospital setting and the perceived severity of their children’s illness.

Previous literature shows that uncertainty in illness is a predictor of emotional distress for parents and children, and high levels of uncertainty surrounding a child’s medical diagnosis and prognosis may delay parents’ ability to make decisions.^21,25 In the hospital setting, parents of acutely ill children (regardless of uncertainty) and parents of chronically ill children with a low level of uncertainty prefer an active or collaborative role in SDM. Interestingly, parents of chronically ill children who perceive a high level of uncertainty prefer a passive role in making their children’s medical decisions. Awareness of the association between uncertainty and SDM may provide an opportunity to address or acknowledge uncertainty clinically. More research is needed to identify sources of uncertainty in parents of hospitalized, chronically ill children (ie, unclear diagnoses, complex treatments, multiple consultants, poor communication, etc) and explore whether addressing these factors could mitigate parental stress and shift their preference toward active or collaborative SDM.

Most physicians support the idea of SDM. However, research shows that physicians are poor predictors of patient preference for SDM, often overestimate the amount of patient participation in decision-making, and tend to perceive a child’s condition as less serious than the parent.^33–35 To our knowledge, this is the first study in which researchers examine SDM preference in parents of hospitalized children (outside the NICU and PICU). The strengths of this study include the in-depth characterization of parent and child demographics and stress-associated characteristics, such as language, financial hardship, severity of illness, and uncertainty in illness. Validated tools were used to assess SDM preference and uncertainty in illness.

The assessment of SDM preference was modeled after Degner’s Control Preferences Scale (Fig 1), a validated tool used to examine the degree of control one prefers when making medical decisions.²⁴ Although appropriate to examine personal preferences, this type of assessment tool is limited by a lack of dimensionality to truly represent one’s beliefs on a 5-point scale. Uncertainty varies across the course of a hospitalization, and not all parents were surveyed at the same time during the course of their children’s hospitalization. Therefore, responses could be affected by previous interaction with the health care team and the parent’s level of uncertainty captured at the time of the survey. Survey responses were parent-reported, including the acute versus chronic nature of the child’s illness. Although this allows us the insight of parental perception, there is likely a range of parental comfort, experience, and complexity of disease. Although the measure of chronic disease was not validated by International Classification of Diseases, Ninth Revision review, parents reporting chronic illness in their children had a median of 6 previous hospitalizations (interquartile range 3–7) compared with acute parents, who had a median of 1 (interquartile range 1–2; P < .001, Mann–Whitney U test). As a large, tertiary-care, county hospital with a significant population of chronically ill children, our ability to gather data from this population allowed us to highlight an important difference in their decision-making preferences. Although the finding was significant, the number of parents of chronically ill children who preferred a passive role in SDM was relatively low (n = 12), further emphasizing the need for more studies in this population.

It is unclear whether uncertainty in illness surrounding a child’s hospitalization, diagnosis, and prognosis is solely perceived by the parent or is also felt by the doctor. The influence of the doctor’s uncertainty on the parent’s uncertainty and the interaction with SDM preference is 1 area for further study. It is possible that parents who prefer passive SDM tend to perceive more uncertainty, or vice versa. Potential future studies should include doctor and parent disparities in perception of illness severity and uncertainty as well as parental expectations for SDM. There is likely variation in expectations for hospitalization among parents of chronically ill children, which are often not addressed with the parent until several days after admission, if ever.^36,37 A longitudinal study examining how uncertainty and SDM preference vary over the course of the hospitalization may clarify whether addressing uncertainty impacts SDM preference over time.