Facilitating Shared Decision-Making with Parents of Chronically Ill Children

Statement of Problem

Parents of children with serious and chronic illness feel the responsibility to advocate fiercely for their child because they often describe medical decision-making as insufficiently empathetic, lacking in genuine partnership with their child’s providers, and reliant upon inadequate and poorly timed information. The Institute of Medicine has prioritized research on the comparative effectiveness of shared decision-making (SDM), a model of patient-provider communication. SDM, has the potential to improve decision quality, better match families with treatments they value and will use, and is correlated with decreased expenditures and health care utilization, particularly among children with special health care needs.

However, SDM has been slow to disseminate into clinical practice, especially among the pediatric population. Physicians attribute their lack of use of SDM to the inapplicability of SDM to their practice population, and a perception that their patients do not wish to participate in SDM; however, the evidence demonstrates that physicians may misjudge their patients’ desire for active involvement. In addition, the dissemination of SDM is thwarted by inconsistent definitions of what it includes and inadequate tools to measure its various dimensions.

There is no widely accepted model of SDM. However, most definitions describe dimensions of SDM where both the physician and patient/caregiver:

  • are involved in the treatment decision-making process
  • share information with each other
  • express treatment preferences
  • decide on the treatment plan

Through previous qualitative work with 40 parents of children with cancer, we determined that parents wanted to be active members of the team and to be seen as partners, but frequently did not have adequate input in how, when, or who spoke to them about their child’s illness and the decisions that needed to be made.  

Here at CHOP, we developed and are testing a measure of Parental Shared Decision-Making preferences (PSDM) designed to assess parents’ preferences for various aspects of SDM with their child’s provider. Our study includes 100 parents of children with chronic conditions. We are using our PSDM measure to assess these parents’ preferences and ability to participate meaningfully in SDM, as well as how well these align.  We believe that understanding parents’ preferences, abilities to participate, and the alignment of these things is essential for developing effective SDM interventions for families.

Our work highlights the need to build consensus around a well-defined and supported conceptual model of shared decision making in the pediatric population. Also, families may desire to participate in shared decision-making but lack the capacities to participate in a meaningful way.  This unmet need underscores the importance of developing and testing interventions to support families in engaging with their health care providers in the way they would prefer.  

Future studies will focus on 1) larger scale administration of the PSDM to further explore the alignment between parental preferences and capacities for participation, 2) development of tailored interventions to empower parental participation, and 3) development of provider-oriented interventions based on different needs and preference profiles by families. 

Suggested Citation

The Children's Hospital of Philadelphia, PolicyLab. Facilitating Shared Decision-Making with Parents of Chronically Ill Children [Online]. Available from: http://www.policylab.chop.edu [Accessed: plug in date accessed here].