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Parental decision making involvement and decisional conflict: a descriptive study Boland, Laura; Kryworuchko, Jennifer; Saarimaki, Anton; Lawson, Margaret L Jun 13, 2017

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RESEARCH ARTICLE Open AccessParental decision making involvement anddecisional conflict: a descriptive studyLaura Boland1, Jennifer Kryworuchko2,5, Anton Saarimaki3 and Margaret L. Lawson4*AbstractBackground: Decisional conflict is a state of uncertainty about the best treatment option among competingalternatives and is common among adult patients who are inadequately involved in the health decision makingprocess. In pediatrics, research shows that many parents are insufficiently involved in decisions about their child’shealth. However, little is known about parents’ experience of decisional conflict. We explored parents’ perceiveddecision making involvement and its association with parents’ decisional conflict.Method: We conducted a descriptive survey study in a pediatric tertiary care hospital. Our survey was guided byvalidated decisional conflict screening items (i.e., the SURE test). We administered the survey to eligible parents afteran ambulatory care or emergency department consultation for their child.Results: Four hundred twenty-nine respondents were included in the analysis. Forty-eight percent of parentsreported not being offered treatment options and 23% screened positive for decisional conflict. Parents whoreported being offered options experienced less decisional conflict than parents who reported not being offeredoptions (5% vs. 42%, p < 0.001). Further, parents with options were more likely to: feel sure about the decision (RR 1.08, 95% CI 1.02–1.15); understand the information (RR 1.92, 95% CI 1.63–2.28); be clear about the risks and benefits (RR1.12, 95% CI 1.05–1.20); and, have sufficient support and advice to make a choice (RR 1.07, 95% CI 1.03–1.11).Conclusion: Many parents in our sample experienced decisional conflict after their clinical consultation. Involvingparents in the decision making process might reduce their risk of decisional conflict. Evidence based interventions thatsupport parent decision making involvement, such as shared decision making, should be evaluated and implementedin pediatrics as a strategy to reduce parents’ decisional conflict.Keywords: Pediatrics, Parents, Decisional conflict, Shared decision making, Family centered careBackgroundFamily centered care, evidence-based clinical decisionmaking, and patient engagement require that patientpreferences guide the decision making process [1–3].Patient engagement for health decisions is optimizedwhen patient and family preferences, medical evidence,and clinical judgment inform the treatment plan [3, 4].In pediatrics, health legislation and policies typicallyrequire parent, legal guardian, or surrogate decision makerinvolvement in treatment decisions when the child hasnot reached the legal age of majority, is unable to makehealth decisions independently, or requires support toprovide consent or assent [5, 6]. Parents want an activerole in health decision making for their child; however,integrated and narrative reviews show that many parentsare inadequately involved in decisions about their child’shealth [7, 8].The Ottawa Decision Support Framework is an evidence-based theoretical framework for guiding patient healthdecision making [9]. It asserts that individuals’ decisionalneeds affect the quality of a decision (i.e. informed, values-based choices), which in turn affects behavior (e.g. delayingor changing decisions), health outcomes, emotions (e.g.regret, blame), and use of health services. When adultpatients are poorly involved in health decisions they aremore likely to experience decisional conflict, a state ofpersonal uncertainty [10]. Like adult patients, parents whoexperience unresolved decisional conflict might encounter* Correspondence: Lawson@cheo.on.ca4Family Decision Services, CHEO Research Institute, Children’s Hospital ofEastern Ontario, University of Ottawa, 401 Smyth Road, Ottawa K1H 8L1, ON,CanadaFull list of author information is available at the end of the article© The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link tothe Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.Boland et al. BMC Pediatrics  (2017) 17:146 DOI 10.1186/s12887-017-0899-4undesired outcomes, such as delaying the decision or blam-ing the healthcare team for undesired outcomes [11, 12].For example, several cohort studies have identified a posi-tive association between parental decisional conflict anddecision regret when making surgical decisions [13, 14].Decisional conflict about treatment choices is moreprevalent among those who are uninformed, unclearabout the risks and benefits, uncertain about theirvalues and preferences, or feel inadequately supported[9, 10]. Presentation of treatment options is a necessaryfirst step to informing and involving patients and familymembers in health decision making. Knowledge of optionsis also necessary for making informed decisions, ensuringpatient and family members’ preferences guide the de-cision making process, and obtaining informed consent[15, 16]. In fact, failing to present available options is akey barrier to involving patients and families in healthdecision making [17–19].Shared decision making is an evidenced-based health de-cision making approach that promotes partnership betweenhealthcare professionals, patients, and parents [20]. By ex-changing information about the medical evidence (options,risks, and benefits) and the family’s preferences and values,healthcare professionals, patients, and parents can deliber-ate to determine the best treatment plan [15]. Shared deci-sion making interventions have been shown in a Cochranereview to improve involvement and reduce decisionalconflict among adult patients [16]. A meta-analysis ofnine studies that evaluated pediatric shared decisionmaking interventions also showed a significant reduc-tion in decisional conflict for parents exposed to theintervention [21]. As such, involving parents in the decisionmaking process has the potential to improve decisional out-comes, such as decisional conflict.Contextual factors, such as condition, severity of the ill-ness, and the quality of interactions are known to influ-ence decisional conflict and the decision making process[22–24]. For example, 6% of women considering prenatalscreening for Down syndrome experienced decisionalconflict [25]. In contrast, 28% of parents consideringhypospadias repair for their son and 33% of parents con-sidering otoplasty experienced decisional conflict [26, 27].Consideration of context is important in order to betterunderstand parents’ experience of the decision makingprocess and decisional conflict [22].Little is known about the relationship between parents’perceived decision making involvement and their experi-ence of decisional conflict, or the influence of context(e.g., clinical setting) on decisional conflict. As such, thisstudy aimed to explore:(1)Whether parents perceived being offered treatmentoptions after discussing a decision about their child’shealth with a healthcare professional.(2)Whether parents experienced decisional conflictafter discussing a decision about their child’s healthwith a healthcare professional.(3)The relationship between parents’ perception ofbeing offered treatment options and decisionalconflict, after discussing a decision about theirchild’s health with a healthcare professional.(4)Whether the proportion of parents’ who experiencedecisional conflict is different across clinical settings.(5)Whether parents perceived that the healthcare teammade efforts to involve them in the decision makingprocess.MethodsDesignWe conducted a descriptive study using a self-administeredsurvey. Our study was approved by the Children’s Hospitalof Eastern Ontario’s Research Ethics Board (approval num-ber 10/91X). We followed STROBE reporting guidelines.Setting and participantsWe administered the survey in a tertiary academic pediatrichospital with more than 2500 physicians, nurses, and staffserving a population of approximately 600,000 childrenaged 18 years or younger. The survey was conducted inambulatory care clinics (medical, surgical and mentalhealth) and the emergency department. These clinicalareas were purposefully selected for two reasons: (a)due to their wide cross-section of patient ages, healthstatus, and high patient volume (approximately 170,845ambulatory care clinic visits and 66,050 emergencydepartment visits annually) [28]; and, (b) to inform theimplementation of shared decision making interventionswithin these clinical areas of our hospital by assessing par-ents’ decisional needs. These shared decision making in-terventions are described elsewhere [29–31].A convenience sample of parents, legal guardians, andtemporary surrogate decision makers (collectively referredto as ‘parents’) were recruited. Parents were eligible if theyself-identified that a decision about their child’s health hadbeen discussed during the clinical encounter immediatelypreceding the survey. Parents were ineligible if their childwas in crisis or admitted to the hospital, or if the parentwas considered by clinical staff too distressed to beinformed of the study.SurveyOur research team developed the survey based on theOttawa Decision Support Framework [9] (Additional file 1),which shows that decision making can be adversely affectedby various factors, including: type of decision, inadequateknowledge of the options, decisional conflict, unclear valuesrelated to the outcome of the options, and insufficientsupport. The first survey item asked parents to identifyBoland et al. BMC Pediatrics  (2017) 17:146 Page 2 of 8the decision that was discussed during the precedingclinical encounter. Consistent with our research ques-tions, parents who perceived that a decision was notdiscussed were advised to discontinue the survey andwere excluded from the analysis. The following itemsasked parents which healthcare professional(s) were in-volved in the discussion (1 item); and, whether theywere asked to consider more than one option (1 item).Next, we screened parents for decisional conflict usingthe Decisional Conflict Scale (4-item SURE test ver-sion) [25].The Decisional Conflict Scale is a validated researchmeasurement instrument that assesses modifiable deci-sional conflict factors, such as patient knowledge, values,and support. The scale discriminates between those whomake or delay decisions, is correlated with knowledge,decisional regret and discontinuation, and has acceptableinternal reliability of >0.84 among parents making deci-sions about their child with life threatening illnesses[32]. The SURE version of the Decisional Conflict Scalewas designed to quickly identify patients in clinical set-tings with clinically significant decisional conflict [25].Individuals who score less than perfect (i.e., < 4/4) onthe SURE test screen positive for clinically significantdecisional conflict. The four items include: (a) certaintyabout the decision; (b) knowledge of the risks and bene-fits of each option; (c) personal values and preferences;and, (d) support and advice (Table 1). The SURE test hasacceptable internal consistency (KR-20 coefficient of0.70) and diagnostic validity among adult patients andparents making decisions about their child’s health with90.1% accuracy, 94% sensitivity, and 90% specificity inprimary care settings with low prevalence of decisionalconflict [33].Respondents were then asked to rate the healthcareteam’s efforts using a 5-point scale (1 = very poor to5 = very good) regarding: involving them in the discussion(1 item); encouraging them to share information abouttheir child (1 item); and, encouraging them to providesuggestions for their child’s care (1 item). The remainingitems asked the age of the child involved in the health de-cision (1 item) and who was filling out the survey (1 item).The survey was reviewed for face validity by experts andpiloted with a parent sample. First, using an iterativeprocess, the survey was presented to pediatricians (n = 4)for feedback. Second, the survey was reviewed and ac-cepted by a panel of experts in shared decision making(n = 3). Finally, the survey was piloted with a conveniencesample of 16 parents across four ambulatory clinics. Nochanges to the survey or data collection procedures wereindicated based on pilot feedback. All participating ambu-latory care clinic and emergency department chiefs of staffapproved this study. Data were collected over the courseof a 1-month period, with approximately 55 h of datacollection in each clinical setting.Survey proceduresSurvey administration procedures were adapted to theambulatory care clinics’ and emergency department’s pro-cesses of care. In ambulatory care clinics, a receptionistintroduced the survey to parents during patient registration.Interested parents were asked to approach the research as-sistant, stationed in the waiting area, after their clinic visit.Our emergency department has research volunteers trainedto conduct studies. Upon registration, the receptionistasked parents if they were willing to be approached bya research volunteer to complete a survey after their visit.Once approached, the research assistant or trainedresearch volunteer used a written script to describe thepurpose of the survey and to advise potential partici-pants that the survey was anonymous, voluntary, andthat their responses would be kept confidential. Parentswere given the opportunity to ask questions. Interestedparents were then advised that if they chose to fill outthe survey, that would mean they were providing con-sent to participate. Participants were provided a clip-board, pen, and one copy of the survey. Depending onthe resources available in each clinic, participants wereinvited 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. Thesurvey was administered immediately after the clinicalencounter to minimize recall bias. Upon completion,participants folded their survey and placed it in aclearly identified box next to the research assistant orvolunteer. As compensation for their time, participantswere invited to enter their name into a draw to win aticket for our hospital’s annual Dream of a Lifetimecharity (ticket value $100). Failure to complete the sur-vey did not disqualify participants from entering thedraw. The research assistant or volunteer obtained thenumber of patients who had registered for clinic/emer-gency visits during the time the survey was administeredto facilitate response rate calculation.Table 1 The SURE testSURE Acronym Items Yes [1] No [0]Sure of myself Do you feel SURE about the bestchoice for you?UnderstandinformationDo you know the benefits andrisks of each option?Risk-benefit ratio Are you clear about which benefitsand risks matter most to you?Encouragement Do you have enough support andadvice to make a choice?Individuals who answer “no” to one or more questions screen positive fordecisional conflictThe SURE Test © O’Connor and Légaré, 2008; this copyrighted table is beingreprinted with permission from the developersBoland et al. BMC Pediatrics  (2017) 17:146 Page 3 of 8AnalysisRaw data were manually entered into a Microsoft Excelspreadsheet (Microsoft Corporation, Redmond, WA, USA)and transferred to Statistical Analysis Software forWindows (version 9.4: SAS Institute, Cary, NC, USA).Descriptive analyses for all items were calculated andsummarized as percentages. Chi-squared tests wereused to explore differences between respondent type,decision discussed, and healthcare professional involved.Parents were also categorized according to whether theyreported being offered treatment options, then analyzedacross SURE test items using chi-squared tests and riskratios with 95% confidence intervals. Parents’ ratings ofthe healthcare team’s efforts to involve them in the deci-sion making process were also categorized according towhether they perceived being provided options and com-pared using a non-parametric Wilcoxon test. Comparativesub-analyses for ambulatory care and emergency depart-ment comparisons were conducted on an exploratorybasis using a chi-squared test. All p values were two-sidedwith statistical significance set at 0.05.ResultsOf the 1156 patients registered for a clinical encounterin ambulatory care or the emergency department duringthe data collection period, 480 parents completed a sur-vey. Our most conservative response rate calculation is41.5% (480/1156) given that the denominator includedclinic registrants who were potentially ineligible for thesurvey (e.g., youth attended the consultation without aparent, child was admitted to hospital, or family was toodistressed to participate). Fifty-one parents reported thata decision was not discussed during their consultation;the remaining 429 surveys were included in the analysis.Of 429 parents, 153 (36%) visited an ambulatory careclinic and 276 (64%) visited the emergency department.The average clinical setting response rate was 32% forambulatory care and 51% for the emergency department.There were no significant differences between parents’responses from ambulatory care clinics and the emergencydepartment with respect to respondent type, healthcareprofessional involved, type of decision discussed, and ageof the child involved. Most respondents were mothers(63%), followed by fathers (29%), and others (6%) (e.g.,grandparent, step-parent, and foster parent). Although notmutually exclusive, health professionals involved includedstaff physicians (74%), residents or fellows (24%), nursepractitioners (20%), medical students (10%), and others(e.g., allied health professional) (6%). The most com-mon types of decisions discussed were tests (56%),medications (54%), follow-up (e.g., referral to specialist)(44%), behavioral intervention (13%), and surgery (8%).The mean age of the child whose health was discussedwas 6 years (SD = 5.9; range 0–18 years).Decisional conflictOf the 412 parents who responded to the SURE test,23% screened positive for decisional conflict. Of these,7% were uncertain about the best choice, 23% reportedincomplete knowledge of the benefits and harms of theoptions, 8% lacked clarity of the risks and benefits thatmatter most to them, and 3% had insufficient supportand advice to make a decision. More parents from theemergency department screened positive for decisionalconflict compared to ambulatory clinics (24% vs. 16%;p = 0.04). However, there were no statistically significantdifferences between clinical settings on participants’ spe-cific SURE test responses: certainty about the decision(93% vs. 92%, p = 0.74), understanding the information(82% vs. 75%, p = 0.13), clarity about the risks and bene-fits (95% vs 91%, p = 0.13), and support and advice (96%vs. 97%, p = 0.70). Overall, there was no significant dif-ference in decisional conflict based on decision type(p = 0.16) (Fig. 1).Two hundred and seven parents (52%) reported beingoffered more than one option. There was no differencein the proportion of parents who reported being offeredoptions between the emergency department and ambula-tory care clinics (52% vs. 53%, p = 0.84). Parents who re-ported discussing options experienced less decisionalconflict than those who perceived no options were provided(5% vs. 42%, p < 0.001). Further, parents with options weremore likely to: feel sure about their choice; understand theinformation; be clear about the risks and benefits thatmattered most to them; and, have sufficient supportand advice to make a choice (Table 2).Ratings of healthcare professionalsParents rated the healthcare team’s efforts to involvethem in the decision making process most favorably(‘good’ and ‘very good’ responses combined) for: involvingthem in the discussion (97% positive ratings; n = 412), en-couraging them to share information about their child(94% positive ratings; n = 386), and eliciting parents’suggestions for their child’s care (88% positive ratings;n = 374) (Table 3). Parents who reported being offeredoptions gave higher ratings compared to parents whodid not for: involving parents in discussions about care(99% vs. 94% positive ratings, p = 0.01), eliciting infor-mation about their child (96% vs. 91% positive ratings,p = 0.04), and encouraging parents to provide sugges-tions for care (91% vs. 82% positive ratings, p = 0.04).There were no statistically significant differences inratings between parents from ambulatory care and theemergency department.Boland et al. BMC Pediatrics  (2017) 17:146 Page 4 of 8DiscussionWe explored parental perceptions of decision making in-volvement and decisional conflict. Overall, we found thatnearly half of surveyed parents reported not being offeredtreatment options and almost a quarter screened positivefor decisional conflict. Parents who reported being offeredtreatment choices were less likely to experience decisionalconflict and more likely to understand the risks and bene-fits of their treatment decision, compared to parents whoreported not being given options. Furthermore, parents thatwere offered options were nearly twice as likely to under-stand the information compared to those who did not per-ceive being offered options. More parents in the emergencydepartment experienced decisional conflict compared tothose from ambulatory care. Most parents provided positiveratings of the healthcare teams’ efforts to include them inthe decision making process. Our results lead us to makefour main observations.First, many parents in our sample were insufficientlyengaged from the first step of the decision makingprocess (i.e., treatment options not identified by healthcareteam), suggesting that their decisional needs were unmetimmediately after their clinical encounter. These findingsare consistent with literature reviews examining parentalinvolvement in decisions about their child’s health [7, 8]. In-deed, a systematic review that specifically examined paren-tal decision making needs showed that parents requiregood quality information (e.g., available options, risks andbenefits) to make informed decisions on behalf of theirchild [34]. Good quality information can be obtainedthrough shared decision making [16]. Our results also sug-gest that parents who are involved in the decision makingprocess are less likely to experience decisional conflict.Another systematic review, which examined shared deci-sion making interventions in pediatrics, found that parentshad improved knowledge and less decisional conflict whenengaged in shared decision making interventions [21].Second, our study found that parents who perceivedbeing provided options were more likely to: feel sureabout the decision, understand the information, be clearabout the risks and benefits, and have sufficient supportand advice to make a choice. Our large sample size likelyimpacted the statistical significance of these findings.For example, the largest effect was for understanding theinformation, with a statistically significant absolute dif-ference of 46% between groups. However, the absolutedifferences for other SURE test items were smaller (i.e.,ranged from 7 to 11%), yet statistically significant.Moreover, the positive outcomes for these three itemswere already high (>85%). This creates challenges forinterpreting the clinical significance of the findings. Cur-rently, we are unaware of an accepted cut-off for deter-mining the clinical significance of SURE test subscaleitems. Additional research is needed to determine criteria051015202530Medications Tests Surgery Follow up Behaviour changeDecisional conflict (%)Fig. 1 Percentage of parents who screened positive for decisional conflict based on decision typeTable 2 Parents’ perception of provision of options and indicators of decisional conflictDecisional ConflictIndicators(SURE test)Reported no options given Reported options given Risk ratio 95% CI P valueParentsn (%)Parentsn (%)Sure of myself 156/176 (89%) 190/198 (96%) 1.08 1.02–1.15 0.007Understand information 71/142 (50%) 188/195 (96%) 1.92 1.63–2.28 0.0002Risks benefits ratio 146/169 (86%) 195/201 (97%) 1.12 1.05–1.20 <0.0001Encouragement 164/176 (93%) 203/204 (100%) 1.07 1.03–1.11 0.0007Boland et al. BMC Pediatrics  (2017) 17:146 Page 5 of 8for interpreting the clinical significance of individualSURE tests items.Third, we were not surprised that different decisional con-flict rates were observed between ambulatory care and theemergency department. Previous studies have also founddifferences in decisional conflict across contexts [22–24, 33].There are several potential explanations for these differencesin parental decisional conflict. Parents from ambulatory caremay have pre-existing relationships with healthcare profes-sionals and are more likely to discuss treatment decisionsalong a continuum (e.g., management of chronic disease)[35]. In contrast, parents from the emergency departmentare more likely to have a first encounter with a particularhealthcare professional and make decisions related toan acute issue, which may contribute to decisional con-flict immediately after the consultation. The perceivedurgency of decision making might differ across thesecontexts, influencing decisional conflict [36, 37]. Des-pite contextual differences, use of shared decision mak-ing in the emergency department and ambulatory careclinics has potential to improve outcomes. A systematicreview showed that shared decision making in pediatricemergency departments is feasible and might improveparents’ knowledge, satisfaction, engagement, and helpthem clarify their values regarding treatment options[38]. A pilot study evaluating a shared decision makingintervention (i.e., patient decision aid and decisioncoaching) in an ambulatory care clinic showed that par-ents and children who were early in the decision mak-ing process had reduced decisional conflict and thoughtthat the intervention was acceptable [30]. Shared deci-sion making interventions were also found to reduceparental decisional conflict when deciding about treat-ment for newly diagnosed attention deficit/hyperactivitydisorder [39].Fourth, parents who reported not being offered optionsstill gave their healthcare team positive ratings for theirefforts to involve them in the decision making process,albeit lower than those who perceived being provided op-tions. For example, of the 48% of parents without options,94% gave their healthcare team positive ratings for involv-ing them in the decision making discussions. Although wewere surprised by these findings, there are several potentialexplanations. It is possible that parents did not perceivepresentation of options as a prerequisite of decision makinginvolvement. Or, parents might have low expectations ofhealthcare professionals’ responsibility to engage them, thusproviding a high rating when any effort to engage them isperceived. Also, parents’ preferred decision making rolesand expectations for inclusion may depend on the child’sdiagnosis, parents’ previous knowledge, socioeconomic sta-tus, and health literacy [7, 40–43]. Alternatively, parents’might have interpreted the healthcare team ratings as anexpression of satisfaction with their clinical encounter. Ifso, a ceiling effect whereby satisfaction with usual care, orthe quality of the interaction, is already high might haveinfluenced results; a phenomenon described in the adultpatient decision making literature [16]. Nonetheless, satis-faction with the interaction or perceived involvement in thedecision making process alone might not lead to high qual-ity health decisions that are informed and consistent withpatient and parent values if patients and family membersare inadequately engaged in the process and experiencingdecisional conflict.The results of our study should be interpreted withinthe context and its limitations. The generalizability of ourstudy findings is restricted for two reasons. First, wefocused on two clinical settings within one pediatric hos-pital. Second, we collected limited demographic informa-tion from parents in favor of a short (1-page) survey thatparents could complete quickly while attending a consult-ation with their child. Decisional conflict, however, hasbeen shown to disproportionately affect more vulnerablepopulations (e.g., lower educational and racial and ethnicminorities) such as parents making decisions about theirchild with a life limiting disease [40, 44]. Further, our re-sponse rates were moderate and selection bias may haveinfluenced our results if parents who enrolled differedfrom those who opted not to participate. We speculatethat our response rates were also impacted by the unitreceptionists’ availability and willingness to help with thestudy, highlighting the need to ensure study buy-in fromall personnel before study implementation. Importantly,descriptive research aims to describe and explain situa-tions and cannot determine causal relationships betweenvariables [45]. Alternatively, descriptive research providesa foundation for specific hypothesis testing using experi-mental research methods.ConclusionsAlmost half of parents in our study perceived they were notprovided treatment options when discussing a healthTable 3 Ratings of healthcare teams’ efforts to engage parents in the decision making processItems Very poorn (%)Poorn (%)Fairn (%)Goodn (%)Very Goodn (%)Involved parents (n = 408) 3 (0.7%) 0 (0%) 9 (2.0%) 86 (21%) 314 (76%)Elicited parents’ knowledge (n = 383) 1 (0.3%) 2 (0.5%) 22 (6.0%) 129 (33%) 232 (60%)Encouraged parents’ suggestions for care (n = 371) 7 (2.0%) 5 (1.0%) 32 (9.0%) 122 (33%) 208 (56%)Boland et al. BMC Pediatrics  (2017) 17:146 Page 6 of 8decision about their child. Presentation of options is criticalfor patient engagement and informed consent. Further,nearly a quarter of parents screened positive for decisionalconflict immediately after their clinical encounter. Parentswho perceived being offered choices were less likely to ex-perience decisional conflict. Shared decision making is apromising intervention to improve parental involvementand reduce decisional conflict, however, more researchevaluating its efficacy in the pediatric setting is needed.Additional fileAdditional file 1: Decision Making Survey for Families. (DOC 55 kb)AcknowledgmentsKathryn Williams, MS, and Daniel McIsaac, MD, MPH, provided statisticalsupport and assisted with data interpretation.FundingThis work was supported by funds from CHAMO/The Ontario Ministry ofHealth Academic Health Sciences Centers Innovation Grant. The studysponsors had no involvement in the study design, collection, analysis andinterpretation of data; in the writing of the manuscript; or in the decision tosubmit the manuscript for publication.Availability of data and materialsOur research ethics board did not approve public access of our raw data.However, our data could be potentially publically available to researchersupon a reasonable request and if satisfactory permissions are obtained. Oursurvey is available as a additional file.Authors’ contributionsMLL, JK and AS designed the study. LB collected the data and wrote thefirst draft of the manuscript. LB, ML, JK, and AS participated in dataanalyses and interpretation and manuscript revisions. All authors approvedthe final version.Authors’ informationJK is now at the School of Nursing, University of British Columbia,Jennifer.kryworuchko@ubc.caCompeting interestsAll authors declare that they have no competing interests.Consent for publicationNot applicable.Ethics approval and consent to participateOur study was approved by the Children’s Hospital of Eastern Ontario’sResearch Ethics Board (approval number 10/91X). Research staff/volunteersused a script to review consent to participate with potential participants(e.g., study purpose, advise that the survey was anonymous, voluntary, andthat their responses would be kept confidential). Participants were given theopportunity to ask questions. Interested parents were then advised that ifthey chose to fill out the survey, that would mean they were providingconsent to participate.Publisher’s NoteSpringer Nature remains neutral with regard to jurisdictional claims inpublished maps and institutional affiliations.Author details1University of Ottawa, Faculty of Health Sciences, Population Health, 125University Street, room 232, Ottawa, ON K1N 6N5, Canada. 2University ofSaskatchewan College of Nursing Health Sciences, E-4220, 104 Clinic Place,Saskatoon S7N 5E5, SK, Canada. 3Ottawa Hospital Research Institute &University of Ottawa, 501 Smyth Road, Box 711, Ottawa, ON K2G 0Y1,Canada. 4Family Decision Services, CHEO Research Institute, Children’sHospital of Eastern Ontario, University of Ottawa, 401 Smyth Road, OttawaK1H 8L1, ON, Canada. 5Present address: School of Nursing, University ofBritish Columbia, Vancouver, Canada.Received: 28 August 2015 Accepted: 5 June 2017References1. 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