Decision Making in Pediatric Plastic Surgery: Autonomy and Shared Approaches.

BACKGROUND: Although shared decision-making is essential to patient-centered healthcare, its role in pediatric plastic surgery remains unclear. The objective of this study was to define the preferred level of involvement in surgical decision-making among children, caregivers, and surgeons. METHODS: The authors surveyed pediatric plastic surgery patients (n = 100) and their caregivers regarding their preferences on child involvement during surgical decision-making. Fleiss' kappa was used to assess agreement between groups. Bivariate Chi-square tests and multinomial logistic regression were used to assess the relationship between decision-making preferences and select demographic factors. RESULTS: Only 34% of children and their caregivers agreed upon their decision-making preferences (k = 0.04). The majority of children (40%) and caregivers (67%) favored shared decision-making between the patient, caregiver, and surgeon. Only 16% of children preferred physician-driven decisions, while 20% of children desired complete autonomy. Children's preferences were significantly associated with their age; the relative risk of children deferring to caregivers or surgeons over a shared approach was lower for adolescents and teens compared to children under 10 years old (relative risk = 0.20; 95% confidence interval: 0.054-0.751; P = 0.02). Caregiver's preferences did not change based on the child's age, but rather were related to the child's gender. Caregivers were more likely to choose the option that gave the child more autonomy when the child was male. CONCLUSIONS: While most caregivers preferred a shared approach to decision-making, children desired greater autonomy, particularly with increasing age. Since there was limited agreement between caregivers and children, surgeons must be cognizant of differing preferences when discussing treatment plans to optimize both patient and parent satisfaction.

Saving Face: Patient Strategies to Reduce Stigma and Barriers to Effective Decision-Making Among Children With Cleft Lip.

Facial differences associated with cleft lips are often stigmatizing and can negatively impact psychosocial development and quality of life. However, little is known regarding patients' responses to societal expectations of appearance, or how these responses may impact utilization of revision surgery. Thus, patients with cleft lips at least 8 years of age (n = 31) were purposively sampled for semi-structured interviews. After verbatim transcription, first cycle coding proceeded with a semantic approach, which revealed patterns that warranted second cycle coding. The authors utilized an eclectic coding design to capture deeper meanings in thematic analysis. Additionally, survey data from a separate study were examined to evaluate participants' interest in improving appearance. Three major themes emerged, all of which reflected a desire to "save face" when interacting with society: (1) Cultural Mantras, which included societal mottos that minimized the importance of appearance; (2) Toughening Up, wherein the participants downplayed the difficulty of having a cleft; and (3) Deflection, wherein the participants took pride in facial features unrelated to their clefts. Despite these efforts to "save face," 78% of participants expressed interest in improving their appearance in the separate survey data.In conclusion, children with cleft lips try to "save face" when interacting with society by depreciating appearance, making light of clefts, and focusing on non-cleft related features. Paradoxically, many desired improvements of their appearance in an earlier survey. Awareness of these coping strategies is critical, as they may negatively impact surgeon-patient communication and inhibit patients from expressing interest in revision surgery.

Decision-Making in Cleft-Related Surgery: A Qualitative Analysis of Patients and Caregivers.

OBJECTIVE: Preference-sensitive surgical decisions merit shared decision-making, as decision engagement can reduce decisional conflict and regret. Elective cleft-related procedures are often preference sensitive, and therefore, we sought to better understand decision-making in this population. DESIGN: Semistructured interviews were conducted to elicit qualitative data. A hierarchical codebook was developed through an iterative process in preparation for thematic analysis. Thematic analysis was performed to examine differences between patients and caregivers. SETTING: Multidisciplinary cleft clinic at a tertiary care center. PARTICIPANTS: Patients with cleft lip aged 8 and older (n = 31) and their caregivers (n = 31) were purposively sampled. Inability to converse in English, intellectual disability, or syndromic diagnoses resulted in exclusion. MAIN OUTCOME MEASURES: Preferences surrounding surgical decision-making identified during thematic analysis. RESULTS: Mean patient age was 12.7 (standard deviation: 3.1). Most had unilateral cleft lip and palate (43.8%). Three themes emerged: Insufficient Understanding of Facial Difference and Treatment, Diversity of Surgical Indications, and Barriers to Patient Autonomy. Almost half of caregivers believed their children understood their clefts, but most of these children failed to provide information about their cleft. Although many patients and caregivers acknowledged that surgery addressed function and/or appearance, patients and caregivers exhibited differences regarding the necessity of surgery. Furthermore, a large proportion of patients believed their opinions mattered in decisions, but less than half of caregivers agreed. CONCLUSIONS: Patients with clefts desire to participate in surgical decisions but have limited understanding of their facial difference and surgical indications. Cleft surgeons must educate patients and facilitate shared decision-making.

Dynamic stability in cerebral palsy during walking and running: Predictors and regulation strategies.

BACKGROUND: The postural control in cerebral palsy (CP) is often deficient and manifests in a variety of impairments. Consequently, maintaining balance and controlling posture is impeded and results in an increased cost of locomotion and higher risk of falls. The margin of stability is an established measure to quantify dynamic stability during gait. It can be facilitated to analyze impaired control mechanisms, but it is unknown if and how people with CP manage to control the margin of stability during a more demanding motor task, such as running. RESEARCH QUESTION: How do people with cerebral palsy regulate dynamic stability during walking and running? METHODS: Children and adolescents with bilateral cerebral palsy (N = 117; 50 female, 67 male; age 11.0 ± 3.2) were retrospectively included. All underwent instrumented 3D gait analysis, walking and running barefoot at a self-selected gait speed. People with CP were compared to a control group of N = 25 typically developed (TD). Repeated measures ANOVAs were computed to analyze group differences and multiple linear regressions to identify predictors for the medio-lateral margin of stability. RESULTS: The medio-lateral margin of stability was significantly higher in the CP group and was statistically unchanged during running. Different adaptions when running were particularly observed in the lateral trunk lean and step width, which remained high in CP, whereas the TD increased the trunk lean and reduced their step width. Step width was the main predictor for the medio-lateral margin of stability in both gait conditions. SIGNIFICANCE: Young people with cerebral palsy manage to maintain their medio-lateral margin of stability during walking and running, however, with significantly higher safety margins compared to typically developed. This conservative strategy may reflect an adaption to motor and postural control impairments.