Project Description Narrative:
Children with medical complexity (CMC) are children who have multiple chronic health conditions, impaired functional status, dependence on medical technology, and high healthcare resource use. Due to advances in medical technology, these children are living longer and fuller lives than ever before. Although they make up only 1% of the pediatric population, CMC account for one-third of all pediatric healthcare spending. The healthcare system is difficult to navigate for families of CMC, resulting in fragmented and costly care. This puts CMC at risk of poor health outcomes and places increased responsibilities on caregivers. In 2023, the National Institutes of Health (NIH) recognized people with disabilities, of which CMC are a subgroup, as being a population experiencing health disparities. This means CMC and others with disabilities experience significant differences in their rates of illness, morbidity, mortality, and survival compared to the general population. For CMC, their caregivers are essential in providing medical interventions, care coordination, activities of daily living, and social and emotional support. To minimize the negative impacts of health disparities, it is critical for caregivers of CMC to be able to support their children.
Complex care programs (CCPs) exist to address barriers to caring for CMC by coordinating care across the care continuum, from community-based services to hospital- and clinic-based services. Two health systems in Wisconsin, Children's Wisconsin and American Family Children's Hospital, provide the majority of care to CMC and their families. Combined, the CCPs at these two health systems currently serve approximately 1,000 medically complex children. While CCPs have demonstrated improvements in healthcare utilization and costs for CMC, the researchers in this project believe that CCPs also have a crucial role in enhancing the overall well-being of CMC and their caregivers.
The multidisciplinary team at Children's Wisconsin (including two physicians, a psychologist, an advanced practice provider, a nurse, and a parent representative) developed a new measure to assess the psychosocial impact of participating in a CCP on caregivers of CMC. The process of developing the measure involved multiple steps: finding themes from parent quotes about the CCP; writing items that represented those themes; interviewing parents to get their feedback on each item; revising or removing items based on parent feedback; and having a group of parents whose children are part of the CCP fill out the measure to gather preliminary results. This is the first measure developed to specifically assess CCP impact on caregivers.
When the researchers tested their new measure in a group of caregivers whose children are enrolled in the CCP at Children's Wisconsin, they got promising results showing that the measure (the Complex Care Program-Family Impact Questionnaire, or CCP-FIQ) assesses four unique concepts: satisfaction with the CCP, caregiver well-being, family well-being, and the extent to which caregivers feel empowered to meet their child's medical needs. They also found that caregivers who are less stressed report that the CCP has a positive impact in these four areas. The next step in the team's journey to develop and validate the measure is to test it in a larger population of caregivers who may have different types of interactions and experiences with CCPs.
In this new investigative phase, the researchers will collaborate with colleagues at American Family Children's Hospital to recruit a larger and more diverse sample of participants. The CCPs at Children's Wisconsin and American Family Children's Hospital are similar in some ways, but different in other ways. Testing the CCP-FIQ at two CCPs will increase the generalizability of the results, meaning that other CCPs who use the CCP-FIQ with caregivers can expect similar results. In this new phase, the team will also conduct a confirmatory factor analysis, which will determine whether the CCP-FIQ is still assessing the same four concepts when tested in a larger population. Lastly, they will further validate the CCP-FIQ by asking participants to complete other measures that examine constructs similar to the ones the CCP-FIQ is assessing. They expect that results from this proposed study and the collaborations formed from this project will provide the foundation for future joint projects.