OBJECTIVE. Patient participation during decision-making can improve health outcomes and satisfaction, even for routine pediatric concerns. The tasks that are involved in decision-making include both information exchange and deliberation about potential options, yet deliberation (ie, the process of expressing and evaluating potential options to reach a decision) is often assessed subjectively, if at all. We objectively assessed the amount of deliberation; the involvement of parents and children in deliberation; and how deliberation is associated with child, physician, parent, and visit characteristics.
METHODS. From videotapes of 101 children's acute care visits to 1 of 15 physicians, we coded the speaker, recipient, and timing of proposed plans (ie, options) and agreements or disagreements with the plans. Reliability of measures was assessed with Cohen's κ or intraclass correlation coefficients; validity was assessed with Spearman correlations. Outcome measures included number of plans proposed, deliberation length, and parent/child involvement in deliberation as either active (child or parent proposed a plan or disagreed with a plan) or passive (physician alone proposed plans). Multivariable models that accounted for clustering by physician were used to relate child, physician, parent, and visit factors to deliberation measures.
RESULTS. The mean number of plans proposed was 4.1, and deliberation time averaged 2.9 minutes per visit. Passive involvement of parents/children occurred in 65% of visits. After adjustment, more plans were proposed in visits by girls, and shorter deliberations occurred with college-graduate parents. Longer visits were associated with more plans proposed, longer deliberation, and reduced odds for passive parent/child involvement.
CONCLUSIONS. Using a reliable and valid technique, deliberation was demonstrated to occupy a substantial portion of the visit and include multiple proposed plans, yet passive involvement of parents and children predominated. Results support the need to develop interventions to improve parent and child participation in deliberation.
Children's participation in their health care has been demonstrated to reduce health care use,1–3 improve the quality of disease self-management,2–4 and increase child5 and parent6–8 satisfaction with care. A primary goal of such participation is the sharing of information to reach a treatment decision.9 Even for the management of an acute, commonplace condition such as otitis media, parents are more satisfied and are less likely to use antibiotics when offered the opportunity to participate in decision-making about treatment, as opposed to a less participatory approach.10 Furthermore, the decision-making process for many routine pediatrics issues is often influenced by parent participation and preferences, such as decisions about circumcision,11 vaccination for human papilloma virus,12 and the use of antibiotics for upper respiratory infections,13–16 yet parents and children often report feeling ill-prepared to participate in health care decisions.17–21
Although definitions of participation in decision-making vary,22 the commonly cited characterization of decision-making of Charles et al23,24 clearly distinguishes between information exchange and deliberation. Information exchange includes descriptions of potential management options; fears, concerns, benefits, and risks related to these options; and patient health history, lifestyle, and social issues that are relevant to these options.24 Deliberation includes the expression of management options (either diagnostic or therapeutic) and preferences for or against the options.24 Therefore, evaluation of participation in decision-making requires assessment of both information exchange and deliberation.
Existing tools to assess participation in decision-making are limited on several fronts. First, much work has focused on assessing participation in the exchange of information during visits.25–30 Assessment of the process of expressing and evaluating potential plans (ie, the deliberative process),24,31 has been neglected,32 yet consideration of deliberation in addition to information exchange is critical,32 because without deliberation, deciding on a plan of action becomes entirely a technical task.33 Furthermore, existing measures are often focused on physician behaviors,30,34–37 are subjective in nature,36,38,39 or are assessed by patients after the visit and therefore perhaps not reflective of actual events.25,40–43 Subjective measures are also suspected to be biased by dynamics of the physician–patient relationship43 and by both physician and patient expectations of visit participation.25,42 Four studies have objectively assessed aspects of decision-making, but assessments are limited to the occurrence of a given behavior or task25,26,43,44 and none of these studies focused on characterizing involvement in deliberation. Last, assessment of decision-making that involves a patient who is accompanied by a caregiver is rare, with no studies in pediatrics and only 1 study examining decision-making with elderly patients and their caregivers.44
Wirtz et al32 have recognized 2 key tasks in deliberation: identifying the potential management plans from which to choose and the dialogue or negotiation about the plans. We develop objective techniques to assess these 2 deliberation tasks during pediatric primary care visits as well as the involvement of parents and children in these tasks. Such tools are important for understanding the effect of participation in deliberation on children's health outcomes for many common pediatric problems. We also apply the techniques to further our understanding of the child, physician, parent, and visit factors that influence participation in deliberation.
To assess participation in children's primary care visits, we recruited Wisconsin-licensed family practitioners (n = 7) and pediatricians (n = 8). We selected physicians to maximize variability (∼50% female, 25% minority, 50% pediatricians, 50% family physicians). After physicians were recruited, all parents who had children who were aged 3 months to 18 years and visited these physicians for an acute complaint during enrollment periods in 2001–2002 were approached before the child's medical visit. Of the 122 patients approached for participation, 101 agreed to participate (83% participation). Children who were in distress, had chronic illness, or were from non–English-speaking families were excluded.
Physicians and parents provided written consent for participation; children who were older than 7 years provided written assent. Before any patient recruitment, physicians completed a 1-page survey that included sociodemographics, specialty training and practice characteristics. Before the visit, parents completed a 1-page survey that included parent and child sociodemographics (gender; age; education; and race/ethnicity as white non-Hispanic, Hispanic, black, Asian, and other) and the child's previous health care use. Survey items were chosen on the basis of either theoretical or known associations with participation or visit outcomes.45–55 The research protocol was approved by the University of Wisconsin Human Subjects Committee and by participating sites.
Each visit was videotaped in its entirety and coded by 2 of 3 trained coders using the Noldus Observer system.56 Coders identified the speaker, recipient, and timing for all proposed plans and agreements/disagreements with those plans. A plan was defined as “an explicit verbal statement proposing a particular course of action for the present or the future.” Appendix 1 exemplifies the application of our coding strategy to dialogue from 1 of our videotaped visits.
On the basis of previously identified key tasks in deliberation, we focused on assessing the potential management strategies considered and the dialogue or negotiation about these options.32 Three outcome variables characterized the deliberation: (1) the number of plans proposed, (2) the length of the deliberation, and (3) involvement of parent and/or child. Number of plans was a count of all unique plans proposed during the visit. The length of the deliberation was the longer of either the time between first and final plans or the time between first plan and final agreement. Deliberation length included time required to reach an agreement and periods of silent consideration of the options but specifically excluded interruptions that were not relevant to the deliberation. Involvement of the parent or the child was characterized as either active (child or parent proposed plans or disagreed with plans that were proposed by the physician) or passive (only the physician proposed plans).
Explanatory variables included child, physician, and parent characteristics as well as visit characteristics. Child characteristics included age, gender, and race/ethnicity (white non-Hispanic versus all others). Physician characteristics included gender, specialty (pediatrics or family practice), and years in practice. Parent characteristics included age, gender (mother/father/both parents/no parent in examination room), and education (college graduate/non–college graduate) of the accompanying parent(s). Visit characteristics included number of physician visits by the child annually (assessed as number of physician visits in the past 12 months) and number of visits to the participating physician by the child annually (assessed as number of visits to the participating physician in the past 12 months), an indicator of whether the physician was the child's primary care physician and visit length. In the rare instance of >1 parent or >1 physician present, demographics of the participants who spoke more were used.
Descriptive data included means, medians, SDs, and proportions. Interrater reliabilities were calculated with Cohen's κ for ordinal or categorical variables and with intraclass correlation coefficients (ICCs) for continuous variables.57 Construct validity of the deliberation measures was evaluated with Spearman correlations. Because the number of plans proposed is count data with overdispersion, ordinary least squares regression is not appropriate for the analysis. Therefore, negative binomial models58 were used to evaluate the relationship between explanatory variables and the number of plans proposed. Incidence rate ratios (IRRs) and 95% confidence interval (CIs) were computed for negative binomial regressions. IRRs describe the ratio of the number of plans proposed compared with the reference group or associated with a 1-unit change in the explanatory variable. For example, an IRR of 2.0 for girls indicates that girls proposed twice as many plans as boys. Gamma log generalized linear modeling was used to relate length of deliberation to participant and visit characteristics with deliberation time ratios and 95% CIs. Again, using child gender as an example, a deliberation time ratio of 2.0 for girls indicates that deliberation was twice as long with girls compared with boys. Logistic regression provided odds ratios (ORs) and 95% CIs for the associations between involvement and the explanatory variables. All models accounted for clustering within physician using robust estimates of variance.
We evaluated the following explanatory variables: child characteristics (age, gender, and race/ethnicity), physician characteristics (gender, specialty, and years in practice), parent characteristics (gender of the accompanying parent, age, and education), and visit characteristics (visit length, whether the physician was the child's primary physician, and number of physician visits by the child annually). Parent age and number of visits to the participating physician by the child annually were not included in models because of collinearity with other model variables. Physician race/ethnicity was not included because the variable failed to achieve P < .20 in any model.59 Variables were modeled as either ordinal or continuous unless otherwise specified. All analyses were performed in Stata 8.60
Children's mean age was 5.4 years (SD: 4.9; range: 0–17.5 years; Table 1). Forty-nine percent were female, and 75% were white non-Hispanic. Physicians were 61% female and 56% pediatricians, with a wide range of practice experience (years in practice mean: 13.0; SD: 8.3). Parents who accompanied the children were predominantly mothers, and 28% were college graduates. The visits averaged 12.2 minutes (SD: 5.3) in length, and 60% were to primary physicians. Eighty percent of the visits were for upper respiratory symptoms, with the remainder including other acute complaints such as gastrointestinal symptoms or injuries.
Reliability of Measures
Interrater agreement was almost perfect for speaker of plan (κ = 0.88) and was substantial for recipient of plan (κ = 0.63) and for number of disagreements (κ = 0.68).57 ICCs indicated substantial agreement for both the number of plans proposed (ICC: 0.70) and length of the deliberation (ICC: 0.70).57
Number of Plans Proposed and Length of Deliberation
The mean number of plans proposed during a visit was 4.1 (median: 3.0). On average, approximately one quarter (2.9 minutes) of the visit was spent in deliberation. The proportion of the visit that was used for deliberation displayed wide variability (Fig 1). Four visits had no time spent in deliberation, whereas 9 visits had >50% of the visit time spent in deliberation. The majority of visits had less than one quarter of the time spent on deliberation.
Sharing of Deliberation
On average, physicians proposed 89% of plans during a visit, parents proposed 9% of plans, and children proposed 2% of plans. Of the plans that were proposed by the physician, 79% were proposed to the parent, 14% were proposed to the child, and 7% were proposed to the child and the parent jointly. Passive involvement of parents and children was observed in 65% of visits. The parent disagreed with a physician-proposed plan in 9% of visits. In all but 1 instance, the physician with whom the parent disagreed was female (P < .001).
Construct Validity of Deliberation Measures
We expected that the number of plans proposed and the length of deliberation would be highly correlated, indicating more discussion of potential plans. In addition, we expected that active parent/child involvement in deliberation would be positively correlated with the amount of deliberation. As expected, the number of plans proposed and the length of deliberation were highly correlated (ρ = 0.70, P < .001). Furthermore, the number of disagreements that were voiced in deliberation was positively correlated to both the number of plans proposed (ρ = 0.37, P < .001) and the length of deliberation (ρ = 0.34, P < .001). Also as expected, active involvement of parents and children was positively correlated with both the number of plans proposed (ρ = 0.50, P < .001) and length of deliberation (ρ = 0.35, P < .001).
Children's Contributions to Deliberation
Children contributed to deliberation by both proposing plans and disagreeing with proposed plans. In 4% of visits, children proposed at least 1 plan. Children disagreed with a plan that the physician proposed in 6% of visits. The youngest of these children was 5.5 years of age (mean age: 11.25 years; range: 5.5–16). The dialogue in Appendix 2 depicts an 8-year-old boy's involvement in the deliberation, resulting in the prescribing of a broader spectrum and more expensive second-line antibiotic, not the first-line agent recommended in clinical practice guidelines.61
Deliberation and Child, Physician, Parent, and Visit Characteristics
Number of Plans Proposed
In adjusted models, the number of plans proposed was related to visit characteristics and to child characteristics. Visit length was significantly associated with more plans proposed (IRR: 1.05; 95% CI: 1.03–1.08) in adjusted models (Table 2). Also, more plans were proposed when the child was female (IRR: 1.39; 95% CI: 1.08–1.78). No physician or parent characteristics were associated with the number of plans proposed.
Length of Deliberation
As with number of plans proposed, the length of the deliberation was related to characteristics of the visit but also to parent characteristics (Table 3). Shorter deliberations were found with college-graduate parents (deliberation time ratio: 0.62; 95% CI: 0.42–0.93). Longer deliberations occurred with longer visits (deliberation time ratio: 1.12; 95% CI: 1.07–1.17). No physician or child characteristics were associated with the length of deliberation.
Parent and Child Involvement in Deliberation
In adjusted models, involvement of parents and children in the deliberation was associated with characteristics of the physician, parent, and visit (Table 4). Passive involvement was less likely with female physicians (OR: 0.22; 95% CI: 0.10–0.50) and with physicians with more years in practice (OR: 0.93; 95% CI: 0.88–0.98). Passive involvement was also less likely in longer visits (OR: 0.86; 95% CI: 0.79–0.94) and in visits when both parents were present (OR: 0.13; 95% CI: 0.05–0.37) compared with when the mother alone was present. The likelihood of passive involvement increased with the number of physician visits in the past year (OR: 1.11; 95% CI: 1.01–1.22). Child characteristics were not significantly associated with involvement in deliberation.
We developed and applied a reliable and valid technique to characterize the deliberative process in pediatric primary care visits, providing the first descriptions of how children, physicians, and parents deliberate together. These techniques complement existing tools that assess decision-making primarily from the standpoint of information exchange25–30 and extend previous work by evaluating deliberations that involve a patient and a caregiver. Although, on average, a substantial proportion of each visit was devoted to deliberation and the deliberation included the consideration of multiple plans, the majority of visits exhibited passive involvement of parents and children. We also found specific child, physician, parent, and visit factors that were associated with the length of deliberation, the number of plans proposed, and parent/child involvement in deliberation. Given the influence of participation in decision-making for many common pediatric concerns,11,12,15,16 our work informs efforts to target and evaluate interventions to promote participation in the deliberative aspect of decision-making, particularly when such participation could improve outcomes.10,62
Although previous studies of decision-making focused primarily on information exchange25–30 and neglected the critical component of deliberation,32,33 these studies noted considerable variability in the decision-making process across visits. Substantial variability existed in information exchange during prescribing25 and in the presence of elements of informed consent during routine clinical decisions.26 Similarly, variability has been noted when assessing the occurrence of information sharing, exploration of feelings or ideas, and closure.43 In our study, we also noted considerable variation in deliberation. This may be the result of our capturing both diagnostic and management plans, because fewer elements of informed decision-making are present during discussions of test ordering as opposed to management decisions.26
Participatory decision-making is seen as the preferred approach in reaching many health care decisions,63–68 including decisions that are common to routine pediatric care,11,12 yet similar to our findings in children's visits, only 50% of adult visits for hypertension or diabetes demonstrated evidence of participatory decision-making.43 Given that primary care physicians may well have greater knowledge of the values, expectations, and preferences of their patients and families, less child or parent involvement in these settings may be acceptable. However, more participatory approaches may be desirable or practical in situations in which there is more risk or more uncertainty—either about the outcome or about parent or child expectations, values, and preferences.67 Our work will support future studies to evaluate how parents and children feel about their involvement in deliberation and the decisions that result. This is particularly important in primary care pediatrics, because parent preferences have an influential role in many routine pediatrics issues, such as circumcision11 and the use of antibiotics for upper respiratory infections,13–16 and physician perceptions of parental preferences are often inaccurate. This has been especially well evidenced in studies of antibiotic use for upper respiratory symptoms.15,16
As with studies of patients' perceptions of participation,55 visit length was positively associated with the number of plans proposed, the length of deliberation, and more parent/child involvement in deliberation, all suggesting more participatory deliberation in longer visits. The Institute of Medicine cites reduced visit lengths as barriers to effective health care communication,69 with shorter visits associated with worse patient and physician outcomes.70–73 This may be particularly problematic in geriatric or pediatric visits, in which patients are commonly accompanied by a caregiver,6,74–76 necessitating the consideration of 3 individuals' expectations, values, and preferences.
In our analysis, there was less deliberation in visits with male children and with college-graduate parents, whereas more parent/child involvement in deliberation was found in visits to female and more experienced physicians. The first finding regarding child gender is consistent with the adult literature: adult female patients experience more participatory visits.55 However, our result with regard to parent education is contrary to subjective assessments of participation among adult patients, where better educated patients report more participation.54,55 Our findings about parent/child involvement are consistent with patient reports of more participatory visits with female physicians54 and with previous work demonstrating that more experienced physicians were more likely to report involving parents in management decisions for infants who are at the border of viability.77 The latter result suggests that training residents to involve children and parents in deliberation may be necessary and fruitful, especially for pediatric primary care issues that are preference sensitive.
The small sample size for analysis may have limited our ability to detect significant associations, particularly for the physician factors. Despite this, we did find several plausible and consistent associations. For our initial exploration of deliberation, we limited the events that were considered to the proposing of plans and agreements or disagreements in response to those proposals. For provision of a finer assessment of the deliberative process, future work will include assessments of specific content elements in deliberation, such as discussions of risks, benefits, adverse effects, and uncertainty of outcomes for proposed plans.22 Furthermore, as in all nonrandomized, observational studies, unmeasured factors may contribute to associations observed. We did not adjust our results for the severity of child illness. However, we did exclude from participation any child who seemed acutely ill. Last, although we recruited a diverse group of healthy participants, caution in generalizing results is warranted, particularly when generalizing to the care of children with chronic illness.
To our knowledge, this work provides the first look at deliberation in pediatric visits. Although deliberation comprised a substantial portion of the acute pediatric visit and included many proposed plans, passive involvement of parents and children predominated. Given that children's participation improves their health outcomes1,2 and the quality of the health care provided1,2,10 while being more satisfying for parents6–8,10 and children,5 striving for a more participatory approach seems advisable, and future studies should evaluate the benefits of greater participation in both information exchange and deliberation. Furthermore, because both parents and children feel ill-prepared to participate in health care decisions17–21 and adult patients can experience anxiety when encouraged to participate,78–81 more work is needed to support the development of participation skills during childhood.82,83 This may be particularly important in primary care pediatric visits, because decisions for many routine pediatrics issues can be influenced by participation and preferences.11–16 Our technique for characterizing participation in deliberation for the child, physician, and parent represents a significant advance in facilitating such research, complementing previous work that has focused on information exchange. Last, for pediatric primary care scenarios in which participation in decision-making can improve outcomes, our results inform interventions to promote participation by considering how child, physician, parent, and organizational factors influence participation in the deliberative process. If results are confirmed, advocating for policies that foster deliberation (eg, longer primary care visit lengths) may encourage child and parent participation and ultimately result in improved health outcomes.
APPENDIX 1: APPLICATION OF DELIBERATION CODING SCHEME TO VISIT DIALOGUE
Parent: “So what do you think, Amox?” [Plan Proposed]
Doctor: “No, no, he's got this bad one (looking at medical chart) here.” [Disagree]
Parent: “I know.”
Doctor: “I think our 2 choices that we've got are Biaxin [Plan Proposed] and Vantin.” [Plan Proposed]
Parent: “Whichever. What we went through with his ear infections was Vantin, and last time that didn't work. But, whatever you think. Then the next one we did, I think, was the Biaxin, and I think that worked.”
Doctor: “And he didn't react to it…like the Zithromax?”
Parent: “Well, you know, the Zithromax was questionable anyway… . We don't know if it was (the) medicine, or viral, or what.”
Doctor: “Does he take the Biaxin okay?”
Parent: “He took it fine.”
Doctor: “Okay. Why don't we stick with Biaxin.” [Final Plan]
Parent: “Okay.” [Agreement]
APPENDIX 2: ILLUSTRATION OF 8-YEAR-OLD CHILD'S INVOLVMENT IN DELIBERATION
Doctor: “You have a significant sinus infection, so we have to treat that. Are you allergic to any medicines?”
Child: “No, just vitamins!”
Doctor: “Just vitamins?… Do you chew pills, do you swallow pills, or do you drink?”
Mother: “He chews. Well, what would you rather do, chew or drink?”
Child: “I want to drink.”
Doctor: “Well, we have to give you 3 weeks worth of the medicine that works.”
Child: “No bubble gum medicine.”
Mother: “No bubble gum flavors.”
Doctor: “Well, then, we better not do liquid, because it's bubble gum flavored.”
Child: “Yuck… .”
Mother: “Honey, you can have a drink of water right after. Otherwise, you'll have to chew a pill.”
Child: “Okay, I'll chew a pill!”
Mother: “You're sure?”
Child: “What is it?”
Doctor: “It's the same medicine, except it's in a pill instead of a liquid.”
Child: “I'll chew a pill.”
Doctor: “It might be bubble gum, I don't know.”
Mother: “Wouldn't you just rather have the liquid and get it over with?”
Child: “I don't like bubble gum. Cherry, Motrin, and berry, that's what I like.”
Doctor: “We'll give you a different kind that doesn't taste cherry or berry…this is called Augmentin, and it is not bubble gum flavored.”
This work was funded by the Agency for Healthcare Research and Quality via K08-HS13183.
We gratefully acknowledge participation by All Saint Medical Group (Racine, WI); UW Health Clinics; Beloit Clinic; Lodi Clinic and Meade Clinic; coding of data by Saurabh Saluja, Sonja Raaum, and Tim Conrad; manuscript feedback from Drs Mark Linzer and Patricia Kokotailo as well as Access Quality and Outcomes Research Network group members; and manuscript preparation by Sonja Raaum, Matt Swedlund, and Julia Yahnke. Linda Sanders and Kirstin Muehlbauer trained and monitored coders; Ron Cramer prepared videotapes.
- Accepted December 12, 2006.
- Address correspondence to Elizabeth Cox, MD, PhD, University of Wisconsin School of Medicine and Public Health, 538 WARF, 610 Walnut St, Madison, WI 53726
The authors have indicated they have no financial relationships relevant to this article to disclose.
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