Between Dec 19, 2024 and Jan 2, 2025, datasets can be submitted to DRUM but will not be processed until after the break. Staff will not be available to answer email during this period, and will not be able to provide DOIs until after Jan 2. If you are in need of a DOI during this period, consider Dryad or OpenICPSR. Submission responses to the UDC may also be delayed during this time.

Browsing by Author "Munger, Meghan"

Now showing 1 - 1 of 1
  • Thumbnail Image
    Item
    Understanding Parental Goals and Decision Making in Ambulatory Children Living with Cerebral Palsy
    (2023-03) Munger, Meghan
    Cerebral palsy (CP) is an early-onset, complex, and permanent disability. National health system standards state that care should be evidence-based, goal-centered, and that children and families need to be active partners in their care planning. Currently a weak body of evidence guides care for children living with CP. This may be because several interventions are considered elective, causing high variability across systems and individuals. Because of the age of onset and complexity, medical decisions are lifelong and across multiple areas of the health care system. However, very little is known about how these families set goals, set priorities, or make health related decisions. Further understanding in these areas has important implications for understanding successful shared decision making and improving the body of evidence that guides clinical care in ambulatory children with CP. This three-paper dissertation used a multi-method approach to fill gaps in these areas. First, we created a novel and valid tool to measure the prioritization of eight common goals. We further learned that families’ goals and priorities changed over time and, not only did this influence their choice of health services, but these decisions were influenced by highly complex and dynamic processes. In addition to time, complexities included how the child functioned within the context of their larger family unit, and how the child’s medical complexity was only one of many inputs that families weigh to make health-related decisions. These findings have important implications for clinical practice and health services research. Our tool can be immediately applied within clinical practice, as well as leveraged to evaluate the efficacy of care delivery in meeting national standards of goal-centered care at a larger population level. Our findings also suggest that conceptual frameworks for health services utilization need further refinement to better support the study of children with CP and potentially other chronic, complex, pediatric conditions.