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Consistent with our research questions, parents who perceived that a decision was not discussed were advised to discontinue the survey and were excluded from the analysis.

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The following items asked parents which healthcare professional s were involved in the discussion 1 item ; and, whether they were asked to consider more than one option 1 item. The Decisional Conflict Scale is a validated research measurement instrument that assesses modifiable decisional conflict factors, such as patient knowledge, values, and support.

The SURE version of the Decisional Conflict Scale was designed to quickly identify patients in clinical settings with clinically significant decisional conflict [ 25 ]. Individuals who score less than perfect i. The remaining items asked the age of the child involved in the health decision 1 item and who was filling out the survey 1 item. The survey was reviewed for face validity by experts and piloted with a parent sample.


Finally, the survey was piloted with a convenience sample of 16 parents across four ambulatory clinics. No changes to the survey or data collection procedures were indicated based on pilot feedback. All participating ambulatory care clinic and emergency department chiefs of staff approved this study. In ambulatory care clinics, a receptionist introduced the survey to parents during patient registration.

Interested parents were asked to approach the research assistant, stationed in the waiting area, after their clinic visit. Our emergency department has research volunteers trained to conduct studies.

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Upon registration, the receptionist asked parents if they were willing to be approached by a research volunteer to complete a survey after their visit. Once approached, the research assistant or trained research volunteer used a written script to describe the purpose of the survey and to advise potential participants that the survey was anonymous, voluntary, and that their responses would be kept confidential.

Parents were given the opportunity to ask questions. Interested parents were then advised that if they chose to fill out the survey, that would mean they were providing consent to participate. Participants were provided a clipboard, pen, and one copy of the survey. Depending on the resources available in each clinic, participants were invited to complete the survey in an examination room, a quiet station set up in the hallway outside the clinic, or in a reserved seat in the clinical waiting area. The survey was administered immediately after the clinical encounter to minimize recall bias.

Upon completion, participants folded their survey and placed it in a clearly identified box next to the research assistant or volunteer. Failure to complete the survey did not disqualify participants from entering the draw. Descriptive analyses for all items were calculated and summarized as percentages.

Chi-squared tests were used to explore differences between respondent type, decision discussed, and healthcare professional involved. Comparative sub-analyses for ambulatory care and emergency department comparisons were conducted on an exploratory basis using a chi-squared test. All p values were two-sided with statistical significance set at 0. Of the patients registered for a clinical encounter in ambulatory care or the emergency department during the data collection period, parents completed a survey. Our most conservative response rate calculation is Fifty-one parents reported that a decision was not discussed during their consultation; the remaining surveys were included in the analysis.

Percentage of parents who screened positive for decisional conflict based on decision type. There were no statistically significant differences in ratings between parents from ambulatory care and the emergency department. We explored parental perceptions of decision making involvement and decisional conflict.

Overall, we found that nearly half of surveyed parents reported not being offered treatment options and almost a quarter screened positive for decisional conflict. Parents who reported being offered treatment choices were less likely to experience decisional conflict and more likely to understand the risks and benefits of their treatment decision, compared to parents who reported not being given options.

Furthermore, parents that were offered options were nearly twice as likely to understand the information compared to those who did not perceive being offered options. More parents in the emergency department experienced decisional conflict compared to those from ambulatory care. Our results lead us to make four main observations. First, many parents in our sample were insufficiently engaged from the first step of the decision making process i. Indeed, a systematic review that specifically examined parental decision making needs showed that parents require good quality information e.

Good quality information can be obtained through shared decision making [ 16 ]. Our results also suggest that parents who are involved in the decision making process are less likely to experience decisional conflict. Another systematic review, which examined shared decision making interventions in pediatrics, found that parents had improved knowledge and less decisional conflict when engaged in shared decision making interventions [ 21 ]. Second, our study found that parents who perceived being provided options were more likely to: feel sure about the decision, understand the information, be clear about the risks and benefits, and have sufficient support and advice to make a choice.

Our large sample size likely impacted the statistical significance of these findings. However, the absolute differences for other SURE test items were smaller i. This creates challenges for interpreting the clinical significance of the findings. Currently, we are unaware of an accepted cut-off for determining the clinical significance of SURE test subscale items. Additional research is needed to determine criteria for interpreting the clinical significance of individual SURE tests items.

Third, we were not surprised that different decisional conflict rates were observed between ambulatory care and the emergency department. Previous studies have also found differences in decisional conflict across contexts [ 22 — 24 , 33 ]. There are several potential explanations for these differences in parental decisional conflict.

Parents from ambulatory care may have pre-existing relationships with healthcare professionals and are more likely to discuss treatment decisions along a continuum e. In contrast, parents from the emergency department are more likely to have a first encounter with a particular healthcare professional and make decisions related to an acute issue, which may contribute to decisional conflict immediately after the consultation. The perceived urgency of decision making might differ across these contexts, influencing decisional conflict [ 36 , 37 ].

Despite contextual differences, use of shared decision making in the emergency department and ambulatory care clinics has potential to improve outcomes. A pilot study evaluating a shared decision making intervention i.

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Fourth, parents who reported not being offered options still gave their healthcare team positive ratings for their efforts to involve them in the decision making process, albeit lower than those who perceived being provided options. Although we were surprised by these findings, there are several potential explanations. It is possible that parents did not perceive presentation of options as a prerequisite of decision making involvement. If so, a ceiling effect whereby satisfaction with usual care, or the quality of the interaction, is already high might have influenced results; a phenomenon described in the adult patient decision making literature [ 16 ].

Nonetheless, satisfaction with the interaction or perceived involvement in the decision making process alone might not lead to high quality health decisions that are informed and consistent with patient and parent values if patients and family members are inadequately engaged in the process and experiencing decisional conflict. The results of our study should be interpreted within the context and its limitations. The generalizability of our study findings is restricted for two reasons. First, we focused on two clinical settings within one pediatric hospital.

Second, we collected limited demographic information from parents in favor of a short 1-page survey that parents could complete quickly while attending a consultation with their child. Decisional conflict, however, has been shown to disproportionately affect more vulnerable populations e. Further, our response rates were moderate and selection bias may have influenced our results if parents who enrolled differed from those who opted not to participate. Importantly, descriptive research aims to describe and explain situations and cannot determine causal relationships between variables [ 45 ].

Alternatively, descriptive research provides a foundation for specific hypothesis testing using experimental research methods. Almost half of parents in our study perceived they were not provided treatment options when discussing a health decision about their child. Presentation of options is critical for patient engagement and informed consent. Further, nearly a quarter of parents screened positive for decisional conflict immediately after their clinical encounter.

Parents who perceived being offered choices were less likely to experience decisional conflict. Shared decision making is a promising intervention to improve parental involvement and reduce decisional conflict, however, more research evaluating its efficacy in the pediatric setting is needed. The study sponsors had no involvement in the study design, collection, analysis and interpretation of data; in the writing of the manuscript; or in the decision to submit the manuscript for publication. LB collected the data and wrote the first draft of the manuscript. All authors approved the final version.

Participants were given the opportunity to ask questions.

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Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. DOC 55 kb. Electronic supplementary material. Laura Boland, Email: ac.