Shared Decision-making For Children Research Articles

The Effect of Medical Home on Shared Decision-Making for Caregivers of Children with Emotional, Developmental, or Behavioral Health Conditions.

Known as the "pinnacle of patient-centered care," shared decision-making (SDM) is the process that enables and encourages the health care provider, the patient, and/or their caregiver (parent or guardian) to participate collaboratively in medical decisions. Prior research indicates that children with emotional, developmental, or behavioral health conditions (EDB) are less likely to attain SDM than children with other special healthcare needs (SHCNs). This study investigates whether the presence of a medical home reduces disparities in SDM among children with EDB when compared to children with other SHCNs and the general pediatric population. Using the 2016 National Survey of Children's Health, we conducted weighted descriptive statistics to investigate the prevalence of medical home and SDM for children with (1) EDB, (2) other SHCNs, and (3) no SHCNs. We then employed a nested multivariate logistic regression model to examine whether the presence of a medical home reduced the disparity between children with EDB and their counterparts. Nationally, 21% of children with EDB (n = 647,274), 14.0% of children with other SHCNs (n = 1,086,068), and 13% of children with no SHCNs (n = 883,969) did not attain caregiver-reported SDM in medical care. In each of the health condition groups, the presence of a medical home significantly improved the odds of SDM (p < 0.001). Presence of a medical home also reduced the disparities observed in caregiver-reported SDM among children with EDB as compared to those with other SHCNs and no SHCNs. Ongoing investment in medical homes may reduce disparities in SDM experienced by children with EDB.

Parent Perspectives in Shared Decision-Making for Children With Medical Complexity.

Shared decision-making (SDM) may improve outcomes for children with medical complexity (CMC). CMC have lower rates of SDM than other children, but little is known about how to improve SDM for CMC. The objective of this study is to describe parent perspectives of SDM for CMC and identify opportunities to improve elements of SDM specific to this vulnerable population. Interviews with parents of CMC explored SDM preferences and experiences. Eligible parents were ≥18 years old, English- or Spanish-speaking, with a CMC <12 years old. Interviews were recorded, transcribed, and analyzed by independent coders for shared themes using modified grounded theory. Codes were developed using an iterative process, beginning with open-coding of a subset of transcripts followed by discussion with all team members, and distillation into preliminary codes. Subsequent coding reviews were conducted until no new themes emerged and existing themes were fully explored. We conducted interviews with 32 parents (27 in English, mean parent age 34 years, standard deviation=7; mean child age 4 years, standard deviation=4; 50% with household income <$50,000, 47% with low health literacy) in inpatient and outpatient settings. Three categories of themes emerged: participant, knowledge, and context. Key opportunities to improve SDM included: providing a shared decision timeline, purposefully integrating patient preferences and values, and addressing uncertainty in decisions. Our results provide insight into parent experiences with SDM for CMC. We identified unique opportunities to improve SDM for CMC that will inform future research and interventions to improve SDM for CMC.

Shared Decision Making Among Parents of Children with Mental Health Conditions Compared to Children with Chronic Physical Conditions

High quality care in pediatrics involves shared decision making (SDM) between families and providers. The extent to which children with common mental health disorders experience SDM is not well known. The objectives of this study were to examine how parent-reported SDM varies by child health (physical illness, mental health condition, and comorbid mental and physical conditions) and to examine whether medical home care attenuates any differences. We analyzed data on children (2-17 years) collected through the 2009/2010 National Survey of Children with Special Health Care Needs. The sample consisted of parents of children in one of three child health categories: (1) children with a chronic physical illness but no mental health condition; (2) children with a common mental health condition but no chronic physical condition; and (3) children with comorbid mental and chronic physical conditions. The primary dependent variable was parent-report of provider SDM. The primary independent variable was health condition category. Multivariate linear regression analyses were conducted. Multivariate analyses controlling for sociodemographic variables and parent-reported health condition impact indicated lower SDM among children with a common mental health condition-only (B = -0.40; p < 0.01) and children with comorbid conditions (B = -0.67; p < 0.01) compared to children with a physical condition-only. Differences in SDM for children with a common mental health condition-only were no longer significant in the model adjusting for medical home care. However, differences in SDM for children with comorbid conditions persisted after adjusting for medical home care. Increasing medical home care may help mitigate differences in SDM for children with mental health conditions-only. Other interventions may be needed to improve SDM among children with comorbid mental and physical conditions.