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.

The Collaborative Improvement and Innovation Network (CoIIN) to Advance the Care for Children with Medical Complexity (CMC), led by Boston University, engaged 10 state teams in interdisciplinary QI projects. Each team was required to engage families as partners in their work, in addition to providers, state Title V and Medicaid leaders, pediatricians, and other relevant CMC stakeholders. Thus, when the FESAT became publicly available part-way through the start of the state teams’ initiatives, the network leadership team decided to add the tool as a requirement of state teams. To ensure family engagement, each team was asked to use the FESAT to assess family engagement at least twice in their systems improvement work. Using the FESAT over time challenged the teams to identify needed changes that would improve how families and staff were engaged in meaningful and accountable ways in each team’s QI work.

In November 2019, Family Voices presented an overview of the FESAT via webinar to the CoIIN teams. This included an introduction to the 4 family engagement domains (Commitment, Transparency, Representation, Impact) with tailored examples about how the CMC CoIIN teams might use the tool to plan, assess, and improve family engagement over time. Two Family Voices staff met with all the team’s family partners on a joint call, as well as with individual state teams, to help facilitate the use of the FESAT. This FESAT “coaching” entailed helping teams define their work so all participants could score the tool in the context of the QI activities they worked on together. The Family Voices coaches also helped state teams interpret their FESAT scores and suggested strategies for action plans to improve or enhance family engagement as work progressed. For example, some CMC CoIIN teams used the FESAT to increase the engagement of families from diverse backgrounds in systems change work. Others created mechanisms for compensating families for sharing their expertise or collaborated with family-led organizations to mentor family partners so they would feel confident about using their lived experiences to improve care for all families served.

This paper will highlight how the Colorado and Oregon CMC CoIIN teams used the FESAT, the resulting changes in how they engaged families as partners in their work, and their experiences in their own words. Each team also collected input from participating team members for this paper, directly quoted herein.

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.

A family leader appreciated the recognition of sibling contributions, noting that as a sibling, she wanted to be included and contribute to the work at hand. Another family partner shared that, “This is the first time I’ve felt like my opinion as a mom has made a difference.” Others shared that, “Being part of the [COIIN Advisory Team] allowed me to see the impact of change at the clinic level. Knowing what they were trying and seeing the impact of the actions was very powerful.”

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.”

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.”

As the family engagement value statement was developed, we sought direct feedback from the SCC faculty and staff, which increased overall awareness of our family engagement efforts. One family partner shared, “Family, primary care and specialty care are 3 parts of the same equation. When all 3 sides are connected, share their knowledge and support one another, we are better.” The value statement demonstrates our commitment to engaging families as equal partners in all systems-level work (Fig 1).

The value statement created a culture shift within SCC. Providers began to recognize that family input is needed to improve the delivery of health care to CMC and their families. The graphic and value statement (Fig 1) was adopted by SCC, Colorado Title V, and other organizations and individuals represented on the advisory team.

As a direct outgrowth of the FESAT process and development of the value statement, we started a Family Affinity Group to help guide the work of the SCC. This committee, made up of primarily family members of SCC patients, was chartered to be the conduit between patients, families, and improvement processes in the SCC. A family leader from the Affinity Group represents the group’s interests as a standing member of the clinic’s QI Committee. This allows bidirectional dialogue between family concerns and clinic operations.

For example, in 2022, during an early meeting of the Family Affinity Group for the SCC, a family member raised the issue of the importance of providing information regarding Medicaid waivers. She expressed dismay at the fact that many families aren’t informed about Medicaid waivers and miss out on financial and developmental support that waivers can provide. Recognizing this gap in care, Children’s Hospital Colorado’s Special Care Clinic (SSC) staff took this information to the QI committee to develop strategies for discussing Medicaid waivers with families more effectively. The Family Affinity group commented that, “Clinic staff needed to be more positive in discussions with families.” The families recognized the need for, “a systemic approach for sharing information about Medicaid waivers and that staff needed to discuss waivers with families multiple times. This allows for a more proactive versus reactive approach to health care financing.”

The family engagement value statement demonstrates the commitment of SCC staff to engage and partner with families at the individual and system-level. At the individual level, providers now use a #JustAsk approach to family encounters. SSC staff created this hashtag based on findings from the state team’s family focus groups conducted twice about a year apart during the project. The #JustAsk encourages all team members to ask families how they’re doing and what their needs are, and to not be afraid to ask difficult, nonclinical questions. Family leaders created additional hashtags to encourage bidirectional communication and empower families to expand the #JustAsk hashtag to include “#JustAsk me to be part of the team,” “#JustAsk me about my life and my experience,” and “#JustAsk me to be part of my sibling’s care planning.”

The use of the FESAT and family engagement value statement has impacted other work within the SCC and the hospital by creating additional family partnerships in other hospital clinics. Specifically, a family leader, who is also a nurse, is now using the FESAT with staff and families in the pediatric orthopedic surgery clinic, where families identified a need for, and created, family-generated educational materials for patients.

To maintain and spread the culture of family engagement beyond SCC, it is essential to: (1) create an environment that supports increased awareness of the benefits of engagement; (2) harness the desire of families and providers to partner and improve health outcomes for the children and youth we serve; (3) provide training and coaching opportunities that help families and providers learn how to partner to make long-lasting behavioral and systems change; (4) and provide compensation, as family partners should not be the only ones at the table who are not reimbursed for sharing their time and expertise. These are essential components for ensuring the family voice is integrated into SSC processes and culture. The creation of the Family Affinity Group that partners with our Quality Improvement Committee ensures that all clinic design, change and improvement strategies are filtered through the lens of family engagement.

The Oregon CMC CoIIN team focused its QI project on transition from pediatric to adult health care to align with 1 of Oregon Title V’s national priorities for children and youth with special health care needs (Alison J. Martin, PhD, e-mail communication, January 2023). The Oregon Center for Children and Youth with Special Healthcare Needs collaborated with clinical partners at the General Pediatrics Clinic of Doernbecher Children’s Hospital at Oregon Health and Science University in Portland, Oregon. Family leaders, clinical partners, and Title V children and youth with special health care needs staff formed the implementation team.

The organizational structure of the our project included 3 teams— (1) core leadership, (2) advisory, and (3) implementation. Each team included family leaders. The director of Oregon’s Family-to-Family Health Information Center and the Principal Investigator (PI) co-led the work for 18 months, until a project coordinator was hired. The Family-to-Family Health Information Center recruited 2 family leaders, both of whom were parents of transition-aged, medically complex youth. The family leaders served on our project advisory and implementation teams. The Oregon Center for Children and Youth with Special Healthcare Needs has a long history and culture of family engagement at the organizational level, which was embedded in the project work to ensure family leaders were engaged as members of all our teams from the beginning of the project.

The implementation team, composed of clinical partners, evaluation team members, implementation specialists, family leaders, the project coordinator, and the PI, completed the FESAT 4 times over the 4-year project (Dec 2019, July 2020, Jan 2021, Jan 2022). The first use aligned with CMC CoIIN reporting timelines, and subsequently, the FESAT was completed annually. The participants scored the Transparency domain the lowest in 2 of the 4 FESAT discussions; hence, the team identified this domain for improvement.

A family leader shared that the FESAT scoring process contributed to better team functioning, stating, “This process forced us to look hard and honestly at what we did as individuals and as a group. I think it forced our team to be accountable for the way we acted and worked together, and it created an even better team environment.” Individual scoring was followed by consensus-based scoring that helped to clarify understanding of each item that was being scored, as described here, “I really liked how we completed the FESAT individually and then came back together as a group to discuss and arrive at consensus scores. This was helpful because it helped clarify the exact meaning of each item in the tool.”

During biweekly implementation team meetings, clinical partners reported on clinic activities and barriers and facilitators to clinic implementation, other team members provided input, and then the team discussed potential solutions together. However, in some instances, because of time limitations, providing detailed and comprehensive updates to the family leaders was not possible. While scoring the FESAT, family leaders identified this as a transparency issue because they felt as though they did not have all of the information they needed to participate meaningfully in some discussions. “I feel like [the rest of you that work together more often] have a more robust, global understanding of the project.” Another family leader said, “The burden of getting the information shouldn’t fall to family leaders. They shouldn’t have to always be the ones asking for clarification.”

Although family leaders acknowledged the discomfort in providing honest feedback during scoring, they also noted how the team’s safe environment was helpful in overcoming hesitation. “It was a little uncomfortable at first, because it almost felt like calling out the group’s mistakes or shortcomings. That can be a difficult thing, to be honest. What helped was that I could see that others taking the FESAT were being completely open and honest, which allowed me and maybe anyone else who hesitated, to also be open. The group acted supportive of an honest discussion and was willing to hear what didn’t go well.”

To address the transparency issue and ensure the family leaders had all the information they needed to participate in implementation team meetings, the PI and project coordinator set up unstructured recurring meetings with the family leaders. These meetings proved to be a productive use of time and were appreciated by both family leaders and project staff. Family leaders also used the time for preparing presentations for CMC CoIIN network-wide virtual meetings, sharing family experiences of accessing care during the coronavirus disease 2019 pandemic, and receiving important updates about future meetings. These meetings were increasingly valuable as the QI project continued to evolve based on learnings and pandemic-related considerations. Discussions held during these times allowed project leadership to better anticipate and respond to family leaders’ needs regarding information about the QI project. To supplement the recurring meetings, project leadership created a “biweekly digest” e-mail to help facilitate communication among all team members. Family leaders especially appreciated the additional information provided in these short e-mails, which summarized events and learning between implementation team meetings and also included relevant resources and articles of interest related to the QI project. A family leader shared that the digest helped her “to fill in the blanks and understand the work happening [outside of implementation team meetings].” When the FESAT was taken again in January 2022, after these changes were implemented, the Transparency domain improved to a perfect score by the family leaders.

Family engagement was central to Team Oregon’s project. The FESAT helped maintain and improve team functioning and helped ensure that our team’s established culture of family engagement continued to be cultivated and attended to, while implementing the QI project. During time periods when implementation discussions took up most of our meeting time, having a tool like the FESAT helped maintain the family engagement strategies that project leadership had put in place at the beginning of the project, such as: continuing to make space for family experiences, making sure that family leaders had the complete information to participate in meetings, and, as newer team members were added, making sure that they were introduced to the established culture of family engagement. Our strategy of introducing new members to the FESAT scoring process also helped us to tangibly demonstrate the value our team placed on family engagement by showing how action plans were developed and implemented.

The success of the FESAT process in the Colorado and Oregon experiences was largely because of the openness of the CMC CoIIN state teams’ leadership to understand the importance of engaging family members in meaningful and accountable ways.

Lessons learned include the importance of establishing early partnerships with family members and including them in every aspect of the project. The Colorado team learned the importance of expanding their initial definition of families beyond traditional parent roles to include grandparents, guardians, foster parents, siblings, and patients. For the Colorado team, the revelation that families wanted providers to ask about their well-being and unmet needs (#JustAsk) has become a defining way in which they help to support the patients and families that they serve.

For the Oregon team, having an iterative process of adding family members to the FESAT scoring team helped periodically evaluate and maintain the importance of family engagement as their project work progressed. Overall, the FESAT tool helped deepen family partnership, as encapsulated by a family leader in Oregon, “The FESAT forced our already well-oiled team to become even better. There is always room for improvement and growth, especially as new members were added or changed or even if the project goals and plans changed. I think the FESAT created a stronger team and helped the team be more cohesive.”

It is increasingly important to measure improvements in the delivery of healthcare services and health outcomes for CMC. However, when it comes to family engagement, rather than applying a measure, the FESAT is an opportunity for organizations to examine how they are informing, supporting, and engaging family partners and staff in efforts to improve systems of care. Rather than ranking or comparing organizations, the FESAT is a strength-building exercise and learning opportunity for clarifying and identifying ways to improve family engagement in programs, policies, and other systems-level work.

The Colorado team reported that their use of the FESAT sparked meaningful conversation and that it was helpful to learn what the family partners and staff thought about how families were being engaged in the work. One team member noted, “It was useful to have organizational reflection on practices related to family engagement, and subsequent discussions were even more valuable for understanding their organizational commitment to family engagement, as too often we invite families to the table, but their hard work around family engagement is not improving policy, practice, programs, or services because families and staff are not adequately supported.”

The Oregon team understood that engaging families in their work ensured families’ priorities helped drive their agenda for systems-changes. This led to greater transparency and team functioning, enabling family leaders to participate more fully during implementation team meetings. One family leader remarked, “From the beginning of this team, it has been clear that family leaders had valuable information to share. This group made it a point to include family leaders and encourage us to speak up, ask questions, and contribute the same as all members. Since we already have trust within the group, it is easy to give feedback knowing that we are in a safe place.”

This paper highlighted the family engagement work of 2 CMC CoIIN teams, and use of the FESAT by the other 8 teams, also promoted meaningfully family engagement at the systems levels in ways that they would not have had access to had they not used the FESAT information and related process.

It was very useful and effective to deploy the FESAT at the network level to give each team the means to gain insight alongside tools for tangible progress on family partnership. Family Voices coaches could consult at point-of-need and deepen conversations for progress through facilitation of family leader affinity group calls. Since each CMC CoIIN state team was utilizing the FESAT, family leaders could share across teams and learn from each other to reinforce and further progress toward meaning and accountable family engagement within each team.

The FESAT is a flexible tool. Organizations can adapt it to prepare for accountable family engagement or to assess past or current family engagement activities and identify ways to improve family engagement in systems change initiatives going forward. The case studies herein provide practical strategies and applications to address the “how” of family engagement in systems change effectively.

Ms Dworetzky led the development of the Family Engagement in Systems Assessment Tool (FESAT), and designed the FESAT protocol, cowrote the introduction, and critically reviewed and made revisions to the manuscript, including establishing connections between use of the FESAT and how state teams improved family engagement over time, and integrated the family partner quotes into the narrative; Ms Coleman provided FESAT coaching to CMC CoIIN teams, cowrote the introduction, critically reviewed and made revisions to the manuscript, and approved the final manuscript as submitted, Ms Paladino provided FESAT coaching to the CMC CoIIN teams, critically reviewed the manuscript, and approved the final manuscript as submitted; Ms Cruze and Dr Fox drafted the Colorado section of the manuscript, and critically reviewed and revised the manuscript; Dr Roy drafted the Oregon section of the manuscript and critically reviewed and revised the manuscript; Ms Bakewell critically reviewed and revised the manuscript; and all authors agree to be accountable for all aspects of the work.

FUNDING: This project was supported by the Health Resources and Services Administration of the US Department of Health and Human Services under grant number UJ6MC32737: Health Care Delivery System Innovations for Children with Medical Complexity ($11 630 000 in total). This information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsement be inferred, by Health Resources and Services Administration, Health and Human Services, or the US government.

CONFLICT OF INTEREST DISCLOSURES: The authors have no conflicts of interest relevant to this article to disclose.

CMC

children with medical complexity

CoIIN

Collaborative Improvement and Innovation Network

FESAT

Family Engagement in Systems Assessment Tool

PI

principal investigator

QI

quality improvement

SSC

Children’s Hospital Colorado’s Special Care Clinic

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