In 1987, Surgeon General C. Everett Koop’s Report on Children with Special Health Care Needs1 proposed a series of action steps toward achieving “comprehensive, coordinated, family-centered, community-based services for children with special needs and their families.” The action steps stressed the need for family-professional partnerships in systems-level activities, such as program development, implementation, evaluation, and policy formulation. More than 3 decades later, families continue to feel like a “check box” rather than a partner on decision-making groups, invited merely to fulfill an expectation or requirement that a family member be present, but not necessarily genuinely engaged.2
Many child- and family-serving organizations understand why it’s important to engage families in work to cocreate new, or to improve, existing policies, services, and quality improvement (QI) activities. However, they struggle with how to do so in ways that are meaningful, accountable, equitable, and that improve access to, and the delivery of, health care services.
To target this gap, Family Voices created the Family Engagement in Systems Assessment Tool (FESAT) based on its Family Engagement in Systems: Framework for Action.3,4 The FESAT was designed for use by organizations in partnership with families with whom they engage in their work. It can be used in a variety of ways, from consensus-based scoring sessions to action planning. Current staff and family users unequivocally state that the most valuable part of using the FESAT lies in the process of completing it, specifically the follow-up discussions. These candid discussions between families and staff, such as healthcare providers and systems, and state agency representatives, highlight different perspectives about how the systems change work should go, or is going, and what is needed by families and staff to be supported in engaging as full partners in ways that drives each team from “why” to “how to” action steps.
TEAM COLORADO EXPERIENCE
Project Background
Coordination Plus is a collaborative project between Children’s Hospital Colorado’s Special Care Clinic (SCC) and the Colorado Department of Public Health and Environment. The SCC is a comprehensive and integrated practice that offers primary care, comanagement, and consultation services to CMC. The project’s goal is to advance the care of CMC by improving communication and collaboration between specialists, primary care, and the family through a comanagement approach.
Special Care Clinic staff laid the groundwork for family engagement by setting up a CoIIN Advisory Team, which included staff, community providers, Children’s Hospital leadership, and families. The Colorado team defined family as parents and foster parents of CMC, youth with lived experience, and siblings of CMC. Having hospital leadership on the Advisory Team ensured that proposed family engagement innovations would be vetted by clinic leaders. The Advisory Team provided input and feedback on project interventions. Together we collaborated in implementing 5 electronic health record improvements, 4 patient portal improvements, and the creation of 4 resources.
Team CO: The FESAT Action Team
Our FESAT Action Team included members from the Advisory Team to support efforts to increase SCC staff awareness, desire, knowledge, ability, and reinforcement around the value of family engagement as part of continuous improvements in clinic processes. All members of the team (families and providers) scored the FESAT at baseline and discussed the domains where family and provider scores differed. Based on the discussions, we adjusted our final scores and prioritized the Commitment and Representation domains for improvement.
A family partner commented, “By having families engaged at the systems level and engaged over time, [the providers] don’t have to guess … they can just ask. If we can establish a routine way to practice business, providers would know that families can weigh in on [clinic process] considerations and decisions.”
Team CO: Creating FESAT Strategies and Goals
Based on the feedback from the FESAT Action Team, Advisory Team, and SCC staff, our priority was to create a family engagement value statement (Fig 1). This value statement acknowledged the importance of routinely and consistently engaging families in clinic design, change, and improvement strategies. This value statement derived from the Commitment domain that we chose to prioritize as part of the FESAT process for improving family engagement. Over a period of 18 months, we sought to create culture change by involving leadership, interdisciplinary staff, and families in this work. As noted by a family partner, “It’s easy to assume from your individual perspective or to think something should be a certain way when you haven’t lived it. Being part of the Colorado CoIIN pilot allows me to offer a different perspective and to better understand where you are coming from. Let’s share our perspectives so that we can understand what’s happening, empathize with each other, and work together more easily.”