Trauma-Informed Leadership in Quality Improvement: What We Learned From Practicing in a Pandemic

The coronavirus disease 2019 (COVID-19) pandemic was a seismic global event disrupting all aspects of society. In clinical care delivery, the ramifications were particularly significant for vulnerable populations like children and youth with special health care needs (CYSHCN).¹ The pandemic compounded the base level of trauma experienced by CYSHCN and their families due to fundamentally fragmented and under-resourced systems of care prepandemic.² The compounded system inequities were even more pronounced for children with medical complexity (CMC), a medically fragile subset of CYSHCN who have greater care needs.^3,4 Real-time response and care delivery innovation was required to meet this moment of crisis. Yet, because of the COVID-19 public health emergency, pediatric care clinicians were already personally and professionally overwhelmed.^5,6 

Notably, in exposing and amplifying existing systems-level gaps, the pandemic disruption and its aftereffects provided an opportune moment to rebuild and redesign systems of care. Quality improvement⁷ (QI) provides a framework and tools to improve outcomes for vulnerable groups and mitigate inequities by reimagining how systems can best meet the population’s needs, adequately support clinicians, and foster resilience for all through rapid data collection, integration, and the adaptation of key learnings to quickly implement change.^8,9 Although the authors of several previously published analyses outline key aspects to guide and sustain critical care delivery during widespread public health threats,^10,11 we know of no parallel literature guiding how to leverage systems-level QI efforts during traumatic events.

With the frequency of local, national, and global emergencies, including disease outbreaks and climate-related disasters, sharply increasing over time,^12,13 it is critical that health care systems develop the capacity and resources required to provide responsive care on the ground amid ongoing and collective trauma. Trauma-informed care (TIC) is “a strength based framework that is grounded in an understanding of and responsiveness to the impact of trauma, that emphasizes physical, psychological and emotional safety for both providers and survivors, and that creates opportunities for survivors to rebuild a sense of control and empowerment.”¹⁴ There are several key principles of TIC that are relevant to care transformation: safety, trustworthiness and transparency, peer support, collaboration, empowerment, and humility and responsiveness¹⁵ (Fig 1). At the practice level, when tailored to each person’s lived experience and intersecting identities, TIC can improve patient outcomes, as well as contribute to clinician and staff wellness to reduce burnout and enhance retention.¹⁶ 

Building on TIC, the term “collective trauma” arose from 9/11 to distinguish trauma experienced by a group of people including first responders and clinicians. During collective traumatic events, system responsiveness is directly impacted by the capacity of individual system actors to remain safe, present, and regulated.¹⁷ Given the effectiveness of TIC, it stands to reason that the underlying trauma-informed principles (TIPs) would be effective upstream at the systems leadership level in supporting the health care workforce.

A thorough literature search uncovered only 1 relevant publication, in the education sector, proposing a TIP-driven model applicable to academic administrators in decision-making around teaching strategies during COVID-19.¹⁸ The current article contributes foundational knowledge by discussing the strategies and flexibilities (based on TIPs) employed by the Boston University (BU) leadership team (referred to throughout the paper in the first person) to effectively support 10 interdisciplinary QI teams in the Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity (CMC CoIIN),¹⁹ funded by the Health Resources and Services Administration’s (HRSA) Maternal and Child Health Bureau. The lessons learned can guide novel adaptive and responsive leadership strategies to alleviate collective trauma during crisis situations and support responsive pediatric care innovation when it is most needed for clinicians, as well as for family leaders engaged in systems-level improvement efforts.

In 2017, the HRSA funded the first Collaborative Improvement and Innovation Network focused specifically on the population of CMC. The CMC CoIIN was composed of interdisciplinary teams in 10 different states and included on each team pediatric primary and specialty care clinicians, family leaders, public health professionals, tertiary care children’s hospitals, payers, and policymakers. We acted as the national coordinating center housed at BU providing leadership and resources to the teams, including training, technical assistance (TA), and funding. Before COVID-19, the state teams’ projects were in full swing, nearing the end of the first year of the implementation of their QI initiatives.²⁰ See Fig 2 for TA and training modalities, including those added or revised in response to COVID-19. See Addendum 2 for state teams and project details.

In early 2020, midway through the 4-year CMC CoIIN project, the COVID-19 pandemic emerged and caused significant disruptions within the state teams and at the network level. Clinics shut down for in-person care, a scramble ensued to quickly leverage telehealth to fill the gap, and the trauma caused by anxiety, isolation, and exhaustion affected the health and wellbeing (WB) of CMC, their families, and clinicians alike.^21,22 

The evolving pandemic resulted in rapid shifts in CMC CoIIN state team structures and processes as teams pivoted to meet families’ urgent and evolving needs, in addition to significant changes in their own clinical operations. Results of an impact survey of state teams we conducted 5.5 months after onset (December 1, 2020) revealed details of institutional and programmatic shifts that impacted team operations (see Table 1). As with health care operations nationwide, state teams experienced budget cuts, institutional limits around which clinics could remain operational and how, and staffing changes due to reassignments for COVID-19 patient care, turnover, and personnel assuming new roles.

State teams had to quickly pivot to virtual operations and telehealth in the first few months, often haphazardly at first. Moreover, teams looked for productive avenues within those first few months to continue their QI efforts because they recognized the ongoing collective trauma being experienced by children, families, and clinicians alike. It is truly noteworthy that several state teams had additional natural disasters strike during the first year of COVID-19 (eg, extreme cold, wildfires, hurricanes).

See Table 2 for themes and illustrative quotes from teams. See Table 3 for a summary of COVID-19 challenges for families as vividly described in state teams’ April 2020 monthly reports.

The overarching goal of our trauma-informed QI approach in the wake of COVID-19 was to keep QI teams productively and meaningfully engaged in the project (rather than dropping out). This was notably a concern for clinicians, but especially for family leaders on each state team, whose primary focus was to keep their children and families safe. To foster responsive innovation among state teams, we applied TIPs with 3 aims, to (1) prevent burnout, (2) increase resilience, and (3) maintain progress toward project goals and objectives.

In this article, we draw on a combination of qualitative and quantitative data sources as indicators of impact and success, following emerging best practices in implementation science aimed at clinicians and health care delivery leaders.²³ Data sources include Year 3 key informant interviews (December 2020 and January 2021; see Addendum 1 for key informant methods), project process data (network-level communications, e-mail correspondence), project evaluations and other survey responses, state team chapters written for the final report to our funders at the HRSA, and family survey data trends across data cycles on the primary project objectives.

The BU Institutional Review Board determined the CMC CoIIN project was not human subjects research and deemed it exempt. State teams followed their own institutions’ guidance for IRB determination and approval.

Note that we did not assess whether state teams formally used TIC in their QI projects; rather, we applied TIPs on the leadership level (Fig 1) with state teams to help mitigate their trauma response so that they could maintain progress on behalf of children and families, using whatever strategies and tools they assessed as critical in the QI process.

The CMC CoIIN’s established culture and operations provided valuable supporting infrastructure for our trauma-informed QI aims. As one team shared, “The CMC CoIIN focus on quality improvement provided a solid, unifying foundation that facilitated the ability of [our QI initiative] to pivot seamlessly in response to the pandemic. The learnings were applicable at both the patient and system level, and training assured that the… program maintained stability amidst the chaos.”

State teams identified 3 key facilitating elements of the project as helping them pivot more quickly during the first 4 months of the pandemic (CMC CoIIN COVID-19 impact survey, July 21, 2020).

1. The integral nature and value of family partnership in the project at all levels²⁰ 

2. The 10 deeply collaborative and interdisciplinary professional state teams

3. A network-wide QI data collection infrastructure for clinical-level family feedback²⁴ 

See Table 4 for supporting quotes; themes were further corroborated through round 2 of state team key informant interviews and teams’ individual final report chapters.

First and foremost, the CMC CoIIN leadership team aimed to mitigate and prevent burnout among 2 especially vulnerable roles on teams, clinicians and family leaders, throughout the remaining project period. Table 5 lists specific examples of each strategy alongside select supporting indicators.

We prioritized, above all else, the TIP of Physical and Psychological Safety of all network members in communications, culture, and operational policies. Using our existing project communication tools (eg, listserv, e-newsletters, TA and training events), we began to express, within days of the federally declared national emergency, our commitment to providing whatever support was meaningful to teams as they navigated the pandemic’s uncertainty both professionally and personally. Before the pandemic, we had held multiday annual learning sessions with all the state teams and individual site visits with each but moved all project events online right away. After HRSA confirmed that grantee funding remained secure on April 3, 2020 (Day 19), we also made clear that no one’s project or funding support was in jeopardy from our perspective because of COVID-19 impacts on performance.

As a leadership team, we modeled vulnerability in TA and training settings about pandemic impacts on ourselves and held space for participants’ similar transparency (eg, through upfront “temperature checks,” specific probing questions). We also purposefully provided space to validate safety concerns, especially family leaders’ concerns for the physical safety of their CMC, to simultaneously promote psychological safety. Notably, we had built credibility before the COVID-19 outbreak with teams by virtue of the Principal Investigator being transparent as a person with lived experience in raising a child with medical complexity, and the Project Director being a trained social worker, which may have helped teams trust more readily in our efforts toward physical and psychological safety.

When the pandemic first hit, the entire network, including the leadership team, needed to take a step back and reassess our individual and collective personal and professional needs. Following the TIP of Humility and Responsiveness, nimbleness was key. We quickly assessed state team needs (Tables 1–3) to avoid assumptions and then be responsive to their initial emerging needs and their ongoing trauma response. A foundational relational component helped drive innovation by, first and foremost, giving QI teams flexibility and additional support through a robust safety net and supportive structures. We acted as facilitators in reducing operational roadblocks for teams when, for instance, teams lost staff. This manifested in unwavering flexibility in all aspects of the project (see Table 5 for examples). In turn, teams could focus their limited time and energy on responsively meeting the needs of children and families and prioritizing their mental health first (also promoting the TIP of Psychological Safety).

The leadership team needed to increase the state teams’ sense of resilience in the face of shared trauma by focusing on how to overcome barriers. Table 6 lists each strategy alongside specific examples and supporting indicators of their utility.

Guided by the TIP of Humility and Responsiveness, on Day 17 of the pandemic (April 1, 2020), we emailed our National Advisory Committee (NAC) of interdisciplinary content experts to glean their recommendations and insights on a revamped plan for TA and training support for teams (Table 7). A key framing that the NAC put forward to foster resilience, which state teams also expressed, was seizing the opportunity of extreme disruption to drive greater innovation and creativity in systems improvement, telehealth being a key example. To support resilience, our first regular state team webinar on Day 44 of COVID-19 (April 24, 2020) focused on adaptive and responsive leadership strategies and tools for pivoting and reframing within teams’ local QI projects.

This leadership strategy centered around the TIP of Peer Support, which existed among the state teams from the start of the project, was fostered by the leadership team and strengthened during the pandemic. Community support and solidarity built a sense of resilience as we worked to overcome major challenges and meet the pandemic needs of families of CMC. We deepened and expanded project structures already in place, such as topic- and discipline-specific affinity groups, as opportunities to fuel cross-learning and sharing. In every network-level interaction (eg, TA and training webinars), we intentionally held an open and adaptive space aimed at allowing individuals to ask for support, support each other, and grapple with real-world challenges together. Additionally, we devoted time and resources in all our activities to amplifying family leaders’ sharing of their challenges and evolving problem-solving strategies because this group was the most impacted by pandemic disruption.

To build resilience, all TA and training had a cross-cutting theme of Empowerment through promoting state team QI learnings, particularly despite, or even because of, the challenges of the pandemic. The CMC CoIIN project, and especially the state teams, were in a unique position to use the QI structure to provide real-time learnings and insights amid the emerging and constantly shifting circumstances of COVID-19 on the ground. We empowered teams to reassess our definition of success and change the direction of processes and goals to meet the moment. With so much unknown, any emerging learning and practices, however messy, were extremely valuable across the network and the wider field. See Table 6 for examples.

Throughout the pandemic, the sense of shared vision and core values around authentic learning and family-partnered work across the network that we worked hard to build, particularly to improve the child quality of life and family WB outcome objectives, served us well. We also leaned into established project structures and adapted each to maintain progress, both operationally and on project outcomes, as best as possible within the current realities. In turn, the CMC CoIIN network managed to maintain overall progress on project outcomes per the family QI survey. Overall trend improvements occurred from cycle 1 (May 1, 2019 to October 31, 2019) to cycle 4 (November 1, 2020 to April 30, 2021) on nearly all primary outcomes (only unmet need went in the wrong direction, which is understandable in the context of the pandemic).

Table 8 provides select quotes from participant source data for each TIP-driven strategy that we employed to maintain progress.

Existing inequities for CMC and their families were amplified during the immediate surge and sustained disruption of the pandemic, including but not limited to fears of biased rationing of critical, in-demand medical equipment, such as ventilators, and a lack of vital medical supplies and home care support, as well as distinct challenges, such as restrictions on adult accompaniment during pediatric hospitalizations. Employing the TIP of Humility and Responsiveness, we leaned into family-partnered QI at all levels to effectively address system inequities and biases head-on as they arose. Remarkably, state teams not only continued but also deepened their commitment to the project’s family partnership culture and structures to drive innovations.²⁰ 

The quantitative family-reported survey data support the hypothesis that state teams were harnessing lived experience at the clinical level to effectively innovate during the pandemic (Table 8).

To ensure our TA and training efforts were being designed with the needs of the interdisciplinary state teams in mind, we leaned into the TIP of Collaboration. Before COVID-19, we created a requirement of a flattened hierarchy at all levels of the project in which family leaders were equal and important members of each team. Their voices became vital to supporting thought partnerships and decision-making around salient TA and training needs.

A distinct example highlights this principle in action. The seismic shift to telehealth became prominent in CMC CoIIN TA and training discussions; in turn, we offered an optional ad hoc CMC CoIIN telehealth workgroup to develop a brief set of relevant items to add to the existing family and staff QI surveys. These were added as required items within 6 months of the onset of the pandemic for high-value, real-time feedback with low effort. See Table 8 for more detail and Addendum 3 for telehealth items.

The TIP of Empowerment aligns well with QI guiding principles in that there are no failures, only lessons to be learned. Identifying what does not work helps in discovering what does work through a process of elimination and refinement. To empower teams, the CMC CoIIN leadership team quickly modified our TA plan on the basis of state team suggestions and expressed needs in consultation with the HRSA and the NAC and implemented the new plan within weeks of the pandemic’s onset (Table 7). To optimize state teams’ sense of choice and control, we explicitly named in communications which elements were mandatory versus optional (Table 7) and which role on the team minimally needed to attend, if any.

In a July 2020 overall project evaluation, 96% of state team respondents strongly agreed that our responsive COVID-19 offerings and flexibility were useful in supporting their team’s work. The 2 most useful components were identified as BU’s flexibility and the COVID-19 and CMC Extension for Community Healthcare Outcomes (ECHO).

The COVID-19 and CMC ECHO promoted the TIP of Empowerment with its wide range of timely and relevant topics based on ongoing feedback from participants.²⁵ The ECHO model is an evidence-based tele-mentoring program designed to create communities of remote learners. We partnered with the American Academy of Pediatrics to bring together state teams’ interdisciplinary members with experts in topical areas using didactic and case-based presentations, fostering an “all-teach, all learn” approach, with family leaders participating at every level (faculty, case presenters, discussion moderators, and learning participants). Topics included COVID-19 presentation in CMC and treatment recommendations, telehealth care delivery and reimbursement, emergency planning, mental health concerns and strategies for clinicians, CMC, siblings and families, vaccine considerations, masking and other infection control measures, return to in-person education, and more. See Table 8 and Addendum 4 for more details.

It was a success for all involved that state teams not only stayed engaged in the project but leaned in to meet the moment for CMC in partnership with families to mitigate emerging and evolving bias. Notably, the network-level learning collaborative structures, relationships, and QI practices developed in the first few years of the project provided invaluable infrastructure, by all accounts, to better assess and respond to the needs of CMC and their families and support team morale throughout COVID-19. Essential components that helped teams were having family leaders already at the table as equal members of the team, the ability to share candidly in an environment of demonstrated mutual respect, built-up trust in relationships and processes on interdisciplinary teams with the established time to meet already set aside, and data collection and reporting structures already in place.

Too many times, and especially in times of crisis, families are crowded out by other pressing requirements and obligations in care delivery improvement efforts. As the pandemic struck, family leaders were uniquely vulnerable to dropping out, straddling both worlds of intense personal and professional impact. In fact, state teams leaned more heavily on their family leaders to ascertain on-the-ground needs in real-time to drive their team’s QI pivots and response to the unfolding trauma experience of individual families. That family leadership stayed at the core, even in the face of an unprecedented public health emergency, was likely predicated on state teams’ previous experience of its essential value to drive relevant and meaningful innovation in the CMC CoIIN.

Recent research into burnout recognizes that everyone carries some burden during times of traumatic stress, even as witnesses (eg, shared trauma). The pandemic was a collective trauma event with a physiologic basis for the trauma and stress response.²⁶ With foundational trust already established, the teams revealed that the “secret sauce” of their success through the pandemic was in relying on the “tend and befriend” adaptive capacity of humans in times of stress.²⁷ CMC CoIIN clinicians and family leaders leaned on each other for peer support with a shared purpose.

The CMC COIIN leadership team facilitated teams’ resilience further by providing timely interventions and training specifically responsive to pandemic-era needs tailored to each state. The ultimate indicator that our efforts succeeded lies in the continued and active participation in the CMC CoIIN of each and every state team through the end of the official project period (2017–2021).

The application of TIPs to QI leadership in emergency situations does not yet have a validated evidence base to support it, nor did we evaluate this approach directly in the CMC CoIIN. No conclusions around effectiveness can be drawn. Rather, we present myriad supporting indicators as a proof-of-concept of TIPs to mitigate collective trauma and support crisis-driven care delivery innovation leaders. It would be important to parse out the specific impact of TIP-driven strategies compared with the foundational project strategies we employed regardless of COVID-19, both on process and health and WB outcomes. We believe that despite the project’s focus on systems transformation for CMC and their families specifically, the trauma-informed approach is generalizable because our project was engaged across diverse health care systems, and public health emergencies such as a pandemic do not discriminate.

Widespread crises like pandemics and weather-related disasters are a growing reality in today’s world.^12,13 As the COVID-19 pandemic was officially declared in the United States on March 13, 2020 and disrupted communities worldwide, the CMC CoIIN project provided a real-time learning laboratory for new leadership approaches to QI that take into account the collective trauma of clinicians and family leaders alike. Leveraging key QI elements within a TIP framework offers a roadmap to systems leaders for addressing collective trauma, particularly for clinicians and family leaders to prevent burnout, increase resilience, and maintain progress.

It is critical for leadership and QI teams to reassess their definition of success and change the direction of processes and goals to meet the moment. Toward this end, TIPs support nimble and responsive system innovations crucial to meeting the emerging and ever-changing needs of the most vulnerable children and families during emergencies, especially amid concerns of bias on the ground. Additional work is needed to explore the effectiveness of this approach in practice, including training in trauma-informed leadership for QI in crisis situations and research to identify the most effective strategies.

The authors wish to recognize and sincerely thank the many members of each CMC CoIIN interdisciplinary state team, the NAC, and the project’s collaborative partner organizations for their resilience, dedication, and commitment to improving care delivery for CMC, their families, and their clinicians. It was an honor learning from and with them.

BU

Boston University

CMC

children with medical complexity

CMC CoIIN

Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity

COVID-19

coronavirus disease 2019

CYSHCN

children and youth with special health care needs

ECHO

Extension for Community Healthcare Outcomes

HRSA

Health Resources and Services Administration

NAC

National Advisory Committee

QI

quality improvement

TA

technical assistance

TIC

trauma-informed care

TIP

trauma-informed principle

WB

wellbeing