By Alice Wertheimer and Michelle Crawford 

Introduction

In early Spring 2020, the Family Engagement Team of The National MCH Workforce Development Center initiated a six-month peer learning program for Title V Family Leaders from each of the seven state teams participating in The Center’s Cohort 2020. Due to its chance timing at the beginning of the Coronavirus quarantine – an unprecedented moment in history – the previously planned program quickly shifted its original focus from curriculum enrichment to resiliency-building. Although most of the Family Leaders did not know one another when the program began, their shared roles as parent representatives in the MCH community and the shared challenges brought on by the pandemic provided a strong commonality that transcended their differences. At the conclusion of the program, it became evident to us that its impact needed to be documented and that the broader Title V workforce could benefit from the infusion of similar peer support programs as a standard component of resiliency of workforce development.

The following selection of real comments taken from session notes, illustrates the initial concerns expressed by Peer Enhancement Group attendees and those they represent, early in the Coronavirus quarantine period.

Personal Impact of the Pandemic

• “I’m feeling constantly worried! Having random moments of uncontrolled sobbing, multiple times a day!”
• “It’s more challenging than ever to care for my medically fragile child. We still need to go into the hospital twice a month for her treatments and I’m scared for her life.”
• “Parents tell me they are being bombarded by links to resources. They are expected to figure out how to teach their children as well as keep up with their own jobs! They’re craving LIVE support, not more lists and documents!”
• Who will take care of my son if I get sick? What if I lose my job?”

Professional Impact of the Pandemic

• “It’s really hard to have the same level of enthusiasm for my Title V work right now while I’m struggling to keep my own head above water AND help other families who are struggling.”
• “Most members of my team have been pulled into direct COVID- response work, which has almost completely halted our work on the Center project. I’m now completely isolated from my colleagues. Where will I fit in?”
• “My team started to work on an Emergency Response Plan and they decided not to include me as a Family Partner because they figured I was overwhelmed at home and shouldn’t bother me!”

Programmatic Impact of the Pandemic

• “We’re having so many tech issues! Most of the families I serve cannot connect to Zoom. How can we continue to engage families if we can’t reach them?”
• “Families with children in special education have been hit particularly hard. Their kids’ entire routine has been upended. How can we support these families?”
• “Parents need guidance on how to decide when it’s safe to send their kids back to the classroom.”

In March 2020, the Coronavirus pandemic forced many Americans to contend with abrupt, dramatic changes to their professional and personal lives, while scrambling to keep themselves and their families safe. For the Family Partners of the National MCH Workforce Development Center’s Cohort 2020, this was exceptionally stressful, and their concerns emerged forcefully during the very first session of what was originally slated to be a content-focused learning enhancement program.

Title V Family Partners bring lived experience to their state MCH teams. They are both the voice of and a resource for parents of children with special health care needs. The Peer Enhancement Program was intended to be a follow-up to their participation in the Center’s Learning Institute held in Chapel Hill in February 2020. The program was scheduled to begin one month later – on March 19 – and would offer follow-up learning with in-depth examination of the tools and skills presented at the Institute.

March 19, 2020, however, came at an historic moment. The rapid spread of the Coronavirus had been much in the news, and a nationwide lockdown had just been imposed. That day, when the program’s first scheduled Zoom meeting connected the seven participants from around the United States, Alice welcomed attendees with a friendly, “So, how is everybody doing?” The outpouring of emotion that ensued made it clear that our original agenda needed to be set aside for the day. The more pressing and obvious need was to open a space for attendees to talk to one another about the challenges to their lives that had been abruptly brought on by the pandemic and quarantine.

Following this emotion-filled first session, we modified the purpose of the planned program, switching from a focus on learning content to a focus on building resilience, thus honoring the expressed wishes of the group of Family Partners to maintain a regularly scheduled “quarantine check-in” meeting with their cross-cohort peers. Making this switch transformed the sessions into opportunities for developing change management and adaptive leadership skills; focusing specifically on the uncharted territory of navigating a global pandemic as the parent of a child with special health care needs and as a professional conveying that perspective to state policy makers.

The program adopted a structure that provided a consistent framework for each session, requiring attendees to address the same questions each time. (See appendix below). It allowed participants to safely

and constructively air challenges they were facing, identify possible opportunities, and track the progress of outcomes. The framework built on the already well-honed personal resilience that is unique to parents of children with special health care needs. Using this structure, the revamped program was designed to be flexible, adaptable, and empathetic—in short, to be resilient, remaining open to the changing needs of the participants.

The framework was inspired and reinforced by a series of short talks on practicing resilience that were delivered to Cohort 2020 at the start of the quarantine by Jeannine Herrick, a Change Management Core member from The National MCH WDC. Her mini-course outlined five

areas the participants could focus on to help them “lean into” their unique leadership strengths, providing them with concepts, tools, and concrete plans for how to move forward. The compassionate support structure helped the participants begin to identify–or figure out how to create–the positives in the crisis that the pandemic had laid at their feet. One participant reported that the framework was so meaningful to her, that she created and modeled a support program for her own work team using the exact structure. 

The Cohort 2020 Peer Enhancement Program turned out to be an unexpected leadership training opportunity. It was an opportunity that could not have been foreseen: a chance for Family Leaders to practice the techniques of resilience in a shared, hands-on, real-world setting and to carry their skills forward into readiness for the post-pandemic MCH community.

Family Partners Reflect on the Program

Throughout the six-month program, the Family Partners became increasingly bonded. To informally assess the program’s impact, we spoke with several of the participants around the time of the final session in August 2020. Below are a few responses received from several regular program attendees.

Q: Reflecting back several months, how did the abrupt change brought about by the pandemic/quarantine impact you personally/professionally?

Participant #1: “Personally, it completely changed the direction for each of my children for 2020. Things that we had planned with transitions, treatments, services and education had to be adjusted. Some of it has worked out ok, and some of it has been really difficult on our family. Financially, we have been stable as my husband is an essential worker. The worry of a family member or myself getting sick is on my mind all of the time; having older children with special needs who are solely dependent on me for care (and I’m their legal guardian) puts an added pressure on me to not get sick (and die). It was a wake-up call to have critical instructions/supports in place for my special needs adult children who depend on me for everything.

Professionally, I am pleased that my organization is structured in a way that we can work remotely and have not missed a beat in serving our community. It has forced us into working differently; that will actually improve sustainability. Grant funding was what is keeping us alive at this time, as well; I am concerned about the economy. Once our grant funding ends, will we be able to depend on our fundraising and service fees, as we were prior to COVID? We will be closing our office location as we are not able to use the building for the public; no sense in paying rent for a space we cannot use. That is sad for me, as our “Family Wellness Center” was a vision that had come to life and was booming prior to COVID.”

Participant #2: “In order to reflect on how the abrupt change brought on by the pandemic affected me, I need to reflect back on 2019. In 2019 my own daughter had 21 brain surgeries and spent months in the hospital. I went into 2020 just wanting health and to find normal again. Being able to go to work. My daughter being able to attend school for her senior year. As soon as I felt I was finding that balance in my life, COVID-19 happened. With COVID, I saw sickness everywhere, and it made it very challenging for me to realize that health for my daughter and my family meant that I needed to maintain control over my mental health. I quickly spiraled into a season of PTSD from the events of 2019.

Professionally, I found comfort and control still being connected, even while home, to major projects such as the WDC Cohort, the CMC CoIIN Project, F2F, and developing our agency’s reopen procedure. I was very excited to return to in-person work at my agency in early May but when returning, our office did not follow the procedures we had set in place and told families how to follow, which caused much tension in our work. Our different local offices also interpreted how Parent Consultants would interact with families in our clinics. Some allowed Parent Consultants to continue to fulfill their duties and others gave no guidance and decided that because we are not on the Medicaid grid we did not get to encounter families in clinics. Even though we have never been on the Medicaid grid, this decision made me realize that our local leadership says they recognize the importance and value of Family-to-Family Partnerships, but their actions during [the lockdown] and after returning during COVID said they do not value my partnership and what we do to improve outcomes for families.

COVID also made me realize, personally and professionally, what is important in life. Family is important. I took time to focus on my mental health and PTSD. I am truly thankful for what COVID taught me and that the act of initiating change led to us moving to be near family, finding new ways to serve others in new careers for my husband and me, and finding ways to slow down and enjoy every moment in life.”

Participant #3: “The pandemic not only affected my professional life it deeply impacted my personal life. As a professional, all scheduled trainings and face-to-face meetings were canceled. It took more than a minute to implement creative strategies to educate providers, community partners, and caregivers, and it took several more minutes to reach families who desperately needed support as they were in survival mode, sliding further into isolation as services were canceled or delayed.

I had a front row seat to the trauma that can result when an individual with special needs is cut off from their support system and isolated. My 14 yo son had two acute stay admits in adolescent mental health facilities and was ultimately admitted to a residential program for anger management when his behavior was not safe in a family setting. I had the benefit of knowing how to navigate systems that most parents do not, and it still was a nightmare.”

Q: Please describe how participating in the Peer Enhancement bi-weekly sessions has impacted you personally /professionally during the crisis. Feel free to use the context of resiliency and creating opportunity from challenge.

Participant #1: “Our sessions were helpful to stay focused on the work each of us are involved with; but there was a therapeutic element that was extremely helpful in not losing energy in why we entered this work… our children. We do this work to make it better for those walking with us in the journey, so that they don’t have to struggle as we have. Parents offer a perspective that is so unique to Public Health; I believe there is opportunity in learning what actions truly make impacts for children and families. I have always thought that the challenges with my kids have a purpose: for me to advocate for system change with the passion and drive that only can come from a parent’s love for their child.”

Participant #2: “The Peer Enhancement bi-weekly sessions helped me connect to other Family Leaders all over, connect with them, be vulnerable without fear of negative outcomes from sharing the challenges, and to realize we were all facing similar challenges when I thought I was on an island. Because of the Peer Enhancement sessions I didn’t give up and quit when I wanted to. Because of the Peer-Enhancement Sessions, I found ways to be more involved in our project even when I felt my own in-office leadership and subcommittee lead was hindering my involvement.

Because of the authentic relationships I formed in the Peer Enhancement sessions, I feel safe being honest with my answers to these questions. It makes me realize we have to continue to speak up for family engagement at all levels if we want our individual change management projects to be successful and meet the needs of the populations we are wanting to serve. 

Participant #3: “Meeting with other Family Leaders sustained me. A group of my peers who understand the daunting task of securing services for individuals in trauma provided the support that those who “get it” can.

Professionally, learning from each other was priceless. Identifying the challenge, acknowledging the barriers SAFELY, and turning the challenge into an opportunity to serve others was the format of our sessions.”

Q: How will this experience affect your role as a Family Leader going forward?

Participant #1: “Knowing that other Family Leaders are having challenges and victories across the country gives me a sense of a “sisterhood.” Having that camaraderie gives an extra boost in my step. I want to strengthen and preserve the relationship of our Public Health Children and Youth Branch with Family Partners to continue a good thing that has been started. There is credible value to our voices at the table.”

Participant #2: “Going forward I will remember that in my role as a Family Leader I have to practice what I teach other families…and that is that we must be connected to a community of others on a regular basis. This connection creates a network of strength that allows us to persevere in the hardest of times and celebrate together the victories.”

Supporting Evidence

Much has been written about the value of employee peer support programs, especially in the context of the Coronavirus pandemic. Mary Jadwisiak, writing in Mental Health Weekly, called them “a secret weapon in the fight against COVID.”

Edwin Fisher, professor of health behavior at the UNC Gillings School of Global Public Health, observed that “Parents of children with special needs…are experiencing all the standard family pressures of isolating at home with kids while continuing to work — but minus the services and therapies their children usually receive.” He points out that “… the value of simply having someone available to listen and empathize holds true: Peer supporters… validate [participant’s] experiences and reassure them that everyone is struggling, and they are doing enough.”

Peer support and/or mentorship is often a standard part of onboarding new staff in the workplace. It provides an opportunity to orient the new person to the formalities of the job as well as pass along institutional knowledge that may not necessarily be included in the “new hire” packet. The evidence supporting the value of peer support is clear. The real-time, real-life evidence generated by The Center’s Family Engagement Team’s program is equally compelling. Although our Family Partners already had the experience of building resilience by virtue of being parents of children with special health care needs and being professional parent leaders in their states, even they were tossed about in the turbulence created by the Coronavirus pandemic. The revamped program proved to be central to this group’s ability to address the leadership, emotional, logistical and work-life balance challenges posed by the Coronavirus pandemic which face The Center, Family Leader and Title V communities.

While the value of peer support became starkly evident in the context of this global public health emergency, we contend that its use should not be limited to extraordinary times and situations, when challenges are overwhelming. Rather, peer support is a vital element of stable, long- term workforce development and should be infused into that process in Maternal and Child Health.

As one program participant said, “The bonding we experienced during these sessions knitted us together in a way about how to be a good family leader [that] trainings or tools could never do. It was the reminder of why we do [what we do] and what systems should be doing to serve the individuals for which they were created. Forever grateful for the opportunity.”

About the National Maternal and Child Health Workforce Development Center

Founded in 2013, the National Maternal and Child Health Workforce Development Center helps state and territorial Title V leaders and their partners tackle the complex challenges they face by offering training, collaborative learning, coaching, and consultation programs. Funded by a grant from the Maternal and Child Health Bureau in the Health Resources and Services Administration, the Center is housed in the Gillings School of Global Public Health at the University of North Carolina Chapel Hill. Its Cohort Experience program provides guidance and structured support to help state Title V teams develop, grow, and bring to fruition an MCH health priority challenge of their choice.

Learn more about The Center at https://mchwdc.unc.edu.

Appendix

The MCH Workforce Development Center’s Family Engagement Team Peer Enhancement Program for Cohort 2020 Family Leaders

• Bi-weekly sessions facilitated by the Family Engagement Team Lead from March – August 2020.

Peer Enhancement Session – Coping Amidst Crisis: Moving Forward! Use the framework below to reflect with the Center’s Family Engagement Team Specialists and Cohort 2020 Family Partners

1. What are my current challenges/opportunities?
2. How is my Center work being impacted by the crisis?
3. What lies ahead for me as a family leader?
4. What do I need to be successful over the next 2 weeks?

Jeanine Herrick, Mini-Course in Resiliency and Adaptive Leadership, March 2020, https://mchwdc.unc.edu/ resilency-and-adaptive-leadership-during-covid-19-crisis/

Mary Jadwisiak (2020). Peer support — A secret weapon in the fight against COVID-19. Mental Health Weekly, 30(19), 5. https://doi.org/10.1002/mhw.32357.

Megan Evans, Patrick Y Tang, Nivedita Bhushan, Edwin B Fisher, Dawn Dreyer Valovcin, Cherie Castellano (2020). Standardization and adaptability for dissemination of telephone peer support for high-risk groups: general evaluation and lessons learned, Translational Behavioral Medicine, Volume 10, Issue 3, June 2020, Pages 506–515, https://doi.org/10.1093/tbm/ibaa047.