Meeting Needs for Chronically Ill Children with a Whole-Child Care Model

Meeting Needs for Chronically Ill Children with a Whole-Child Care Model

A nurse-led, interprofessional collaborative focuses on social, physical, emotional and medical needs for patients.
Child patient smiles at her doctor.

Redesigning care to improve quality outcomes is essential to improving patient and family satisfaction, as well as improving costs. In one example of this, Rady Children’s Hospital San Diego set out to create a whole-child care model that is patient centered and family focused to ultimately improve quality outcomes.

This nurse-led, interprofessional collaborative focused on whole-child care, including social, physical, medical and emotional needs. The goal of the project was to implement and assess outcomes of an innovative comprehensive model of care for chronically ill children.

Care navigation leads to better outcomes

“Health care just by nature can be fragmented,” says Erin Dale, M.S.N., RN, FNP-C, quality, education and wellness coordinator at Rady Children’s. “We thought if we can have somebody to take accountability for that whole person, not just the medical needs but all of the social, community and behavioral health needs, maybe we can move the bar.”

This started with improving care navigation strategies. However, there must first be a culture change geared toward proactive care and accountability. Staff at Rady Children’s increased accountability across the board by identifying the “captain of the ship” and creating a system where one person was in charge of a patient’s “whole person.”

From there, the whole-child model at Rady Children’s began to take shape. With patients at the center, and families a key focus, Rady Children’s included patient care coordinators who help close care gaps, coordinate resources and re-establish medical homes. With coordinators in place, nurses act as care navigators to serve as liaisons, coordinate needs and perform comprehensive need assessments.

To orient and help educate staff, Dale and her team focused on person-centered care training. The core, care navigation team included four registered nurses, four patient care coordinators and one quality, education and wellness coordinator. The four pillars of this work included:

  1. A review of the health literacy materials for patients and families.
  2. Implementing teach back techniques to work with families and have them repeat back their understanding of the care required.
  3. Shared care-planning for patients.
  4. Motivational interviewing training for staff to help them create affirming care experiences.

Getting started with the pilot program

The pilot program at Rady Children’s included 383 children from 2018 to 2021, ranging from 0 to 20 years old. This group fully relied on Medicaid and every child had a chronic diagnosis such as cystic fibrosis, diabetes, hemophilia, leukemia or sickle cell disease.

“We did a lot of local comprehensive preventive care,” says Dale. “This was one of the things where we learned a lot also from the Family Advisory council because, for example, if you are a parent of a child with a chronic illness, you're at the doctor's office way more often than you want to be. Follow ups and reaching out can help.”

During the program, the nurse navigators identified a variety of needs and coordinated their care to provide:

  • Preventive care. This included patient outreach and connecting on a personal level, health education for patients and families, scheduling assistance and proactive follow ups.
  • Member transportation. If patients were unable to make it to appointments, the team helped them set up rides. In one year, this meant organizing 378 rides.
  • Food security. Fifteen staff were trained to help patients navigate hunger-free solutions. They would connect patients with local food banks and set up referrals with an 84% success rate.
  • Transition to adult care. The team taught self-management and care techniques to patients to ease the transition into adult care as they grow and become more self-reliant.
  • Child life specialist services. The child life team provided patients with therapeutic outlets, emotional support and coping techniques, among other things, to increase kids’ resiliency.

A successful implementation

The program has improved care across the board. Patients in the pilot program experienced decreased ED visits and decreased inpatient admissions by 44%. The whole-child care program also decreased the median length of stay by 23.5%.

Several safety outcomes were also prevented, including:

  • 4 medication discontinuations.
  • 6 medication errors.
  • 3 avoidable ED visits.
  • 36 missed appointments.
  • 13 delays in care.

About Quality

Children's hospitals are working to accelerate the curve and achieve bigger gains in improvement of outcomes for patients and families.

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