Complex Care Needs a Team Approach: How Implementation of a Nurse Key-Worker Can Improve Care for Children With Medical Complexity and Their Families

Abstract

Background

Children with medical complexity (CMC) have complex, chronic conditions and require specialized care and extensive support across multiple sectors. Children's Healthcare Canada guidelines highlight the importance of care coordination for this population. The BC Children's Hospital Complex Care programme introduced a Nurse Key Worker (NKW) to perform care coordination in conjunction with the expertise of physicians and nurse practitioner (NP).

Objectives

To assess the feasibility of the NKW role in coordinating care for families of CMC. To evaluate the activities performed to meet care coordination needs.

Methods

Thirty-one caregivers of CMC (0–19 years old) were invited to work with the NKW. Electronic health records were utilized to determine the number of patient appointments before and after NKW implementation. Caregivers completed the Family Experience with Care Coordination Measure and Patient-Reported Outcomes Measurement Information System Self-Efficacy tools at baseline and 9 months post-implementation. The physician, NP and NKW completed the Care Coordination Measurement Tool for a duration of 2 weeks to assess and quantify care coordination needs.

Results

There was an average of 45% increase in the number of patient appointments after NKW implementation. Caregivers of CMC recognized their NKW as a reliable, skilled, single point of contact. More caregivers reported feeling “very confident” in their ability to care for their CMC. The NKW addressed 168 care coordination needs and performed 576 activities, whereas the NP and physician addressed 115 care coordination needs and performed 282 activities. The care coordination activities prevented unnecessary emergency and clinic visits and reduced family stress and burden.

Conclusion

The NKW effectively addressed the care coordination needs of CMC and their families without requiring additional physician or NP resources. The NKW, NP and physician performed different activities to meet care coordination needs.