Establishing a Peer Support Program for Survivors of COVID-19: A Report from the Critical and Acute Illness Recovery Organization

Estimates from the coronavirus disease 2019 (COVID-19) pandemic suggest that about 20% of adults with COVID-19 are hospitalized, and in approximately 20% of those, severe acute respiratory failure develops that requires life-support treatments such as invasive mechanical ventilation.^1,2 Results of research from before the COVID-19 pandemic suggest that most of these adults with critical illness will survive to hospital discharge.^3,4 Survival, for many, will come with a legacy of new or worsening deficits in physical,⁵ mental,^6,7 or cognitive health in the months to years after hospital discharge.^8,9 Post–intensive care syndrome has become the agreed upon term for these new or worsening health problems that can persist beyond an acute hospitalization for serious illness.⁸

The psychosocial outcomes in survivors of critical illness include high rates of clinically significant anxiety,¹⁰ depression,¹¹ and posttraumatic stress symptoms.¹² Related, many survivors are unable to return to work¹³ and thereby suffer financial consequences that further the distress of survivors and their loved ones¹⁴; income loss by both the survivor and family members who curtail work to serve as caregivers may contribute further to their collective psychological distress.

The multiple challenges of providing recovery focused care in the intensive care unit (ICU) during the pandemic, along with the stigma and social isolation unique to COVID-19 survivors, may contribute to a high level of psychological distress in COVID-19 survivors.¹⁵ Urgent innovation is needed to mitigate psychosocial distress among COVID-19 survivors. In this review, we leverage the growing expertise within the Critical and Acute Illness Recovery Organization (CAIRO), an international multidisciplinary organization committed to improving the quality of life of patients and families after critical illness, to (1) define peer support and provide a vision for its potential role in COVID-19 recovery and (2) summarize key strategies for developing and sustaining a peer support program during the pandemic.

Defining Peer Support and Its Role in Recovery from COVID-19

Peer support is a system of giving and receiving help in relationship with others who share similar experiences. Table 1 summarizes key principles of peer support, which include acceptance, respect with dignity,¹⁶ reciprocity,^17–19 mutual responsibility, and trust/integrity. Within the health care context, peer support or peer-based support programs are complex interventions studied as an approach to (1) improve patient outcomes after transitional stressors (eg, pregnancy, postpartum depression, bereavement), (2) improve patients’ and families’ adjustment to chronic diseases (eg, cancer, drug addiction, diabetes), and (3) promote healthful living or disease prevention (eg, use of peers to prevent sexually transmitted diseases or to promote cancer-screening behaviors).²⁰

Table 1.

Principles of peer support

Principle	Description
Acceptance	Aware of own biases and privilege Honest, direct, and respectful Open to other views
Respect with dignity16	Value differences and unique abilities Keep confidences Respect people’s right to make their own decisions, even “wrong” ones
Reciprocity17,18	The importance of give and take Reclaiming “help” as a natural process between 2 or more people Social exchange
Mutual responsibility	Each person takes responsibility for their actions Negotiation of “responsibility” Shared power–no hierarchy
Trust/integrity	Believing in one another Holding hope for each other Building relationships that focus on one another’s well-being Confidentiality

Since we suggested peer support as a novel strategy to mitigate psychological distress after critical illness,²¹ many health systems have started to integrate various models of peer support²² into their ICU recovery treatment as a way to promote resilience, provide social and emotional support, and ensure informational exchange between critical illness survivors. The 6 models of peer support that have been described include community based, psychologist led outpatient, within ICU, within ICU follow-up clinics, online, and peer mentor models.²²

Before the COVID-19 pandemic, few of the health systems that had started peer support programs for ICU survivors had transitioned to a true peer-led model. As health systems respond to the moral call to develop robust infrastructure to improve the recovery and social integration of adult COVID-19 survivors, the pandemic may catalyze the transition and growth of peer-led models for 2 reasons. First, a unifying, singular diagnosis may serve to overcome a barrier to the peer-led model, which is the heterogeneity of experiences that lead to critical illness. Although survivors who required invasive mechanical ventilation have much in common, the stories of patients who arrived in that state may differ dramatically. For example, a car accident, a pneumonia, and a progressive chronic condition can each lead to the common pathway of requiring life support. Although similarities abound, including the frequency of long-term impairments and recovery challenges, an anchoring diagnosis is often lacking. Second, the high number of health care workers affected by COVID-19 may motivate a quicker transition to a peer-led model of support.

Despite the limited evidence of the effectiveness of peer support interventions in ICU survivors,²³ recent qualitative analyses elucidate 3 potential mechanisms by which peer support programs could be beneficial to COVID-19 survivors. First, by providing a forum for survivors to share their experiences, peer support may improve psychological morbidity, increase motivation for rehabilitation therapy, and reduce social isolation. Second, by providing a means for patients to better understand their acute illness experience, peer support may provide survivors with internal and external validation of recovery progress, may help provide tools to improve patients’ understanding of the relevant parts of the health care system, and may help manage expectations for recovery. Third, by providing the structure for survivors to give benefits to another person as they receive benefit (reciprocity), peer support may facilitate resilience, trust, and a sense of purpose.²⁴

Considerations for Starting and Sustaining a Peer Support Program

Using qualitative analysis, researchers from our group have identified barriers and enablers to starting peer support programs.²⁵ In Table 2, we summarize 6 key strategies for developing and sustaining a peer support program during the pandemic. The preparation steps include setting goals and objectives for the peer support program, assembling a multidisciplinary team of innovators, and deciding which online platform to use for the meeting. Although ideally the innovation team would include a survivor of COVID-19 or another critical illness, most of the peer support programs currently being sustained for ICU survivors are facilitated by behavioral health experts, and it may take several years to identify a suitable peer leader. Each platform for online meetings has advantages and disadvantages; teams should be aware of their local institutional policies regarding best practices for meeting online via these platforms. Although phone conferences are an option, we believe video platforms are the best choice to enhance the social connection of the group.²⁶ Other online communities allow survivors to interact with one another asynchronously, meaning that participants can interact on their own timeline, thereby allowing group members from across multiple time zones to connect with one another. One pervasive challenge remains for peer support online programs during COVID-19: how to be more intentional about including participants across all racial/ethnic backgrounds and all physical and cognitive abilities.

Table 2.

Six strategies for developing and sustaining a peer support program during the coronavirus disease 2019 pandemic

Strategy	Action
Preparation	Form an innovation team Consider a multidisciplinary team with a diverse set of skills and motivation for involvement Assess the needs of the population Set goals and objectives for the peer support Get familiar with online platforms
Recruitment	Start early Use a variety of strategies Use informational brochures for patients, families, and other clinicians
Facilitation	Demonstrate active listening and empathic communication skills Negotiate boundaries and ground rules Manage side conversations and interruptions Moderate asynchronous communities to ensure all members feel connected and heard
Trauma-informed approach	Know the developmental, behavioral, cognitive, social, and physical effects of trauma
Planning logistics	Size of the group Duration of the meeting Frequency of the meeting
Planning for the in-between	Debriefing Regular reflection

Despite the high volume of COVID-19 survivors, the recruitment of suitable participants for a peer support program requires intention and care. Starting the recruitment during the hospitalization period is feasible by providing information about critical illness recovery to patients, caregivers, and health care providers. Where active, ICU follow-up clinics can also serve to identify patients and family members who may benefit from engaging in peer support.

Choosing facilitators who are skilled and motivated to work with COVID-19 survivors will be instrumental for the success of the peer support program. Effective facilitators engage the group members; prioritize safety, respect, and privacy; and keep the conversation focused and fluid. Facilitators foster the development of empathic, respectful, and collaborative relationships between the participants. On a video platform, it may be crucial that facilitators be visible at all times during the meeting in order to maintain a strong collaborative relationship during these group interactions.²⁶ Cofacilitation may help improve the effectiveness and safety of the peer support by addressing the challenge of effectively responding to intense emotions through online platforms.

Given the high prevalence of traumatic experiences in ICU survivors and their families, facilitators should use a trauma-informed approach to facilitation, which acknowledges that all types of trauma may adversely affect how survivors interact and cope.²⁷ (See Table 3 for key principles of trauma-informed peer support.) Whether peer support programs can be useful in facilitating posttraumatic growth, defined as a positive psychological change that can come from processing a trauma, is a question that could be investigated in future research studies.²⁸ For facilitators of an asynchronous online community, ensuring that group members feel heard and acknowledged may take extra effort. Unlike in-person and video groups, where feedback and comments are in real time, groups whose members connect asynchronously run the risk of having members feel alone or unheard if responses to their participation are not timely.²⁹

Table 3.

Principles of trauma-informed peer support

Culturally responsive Informed about the developmental, behavioral, social, and physical effects of trauma Maximizes psychological safety–takes particular care to create a welcoming environment, minimizes revictimization Seeks to understand the meaning people make of their experiences; focuses on understanding “What happened to you?” Collaborative and responsive Empowered, enables voice and choice (aims to maximize autonomy, choice, trustworthiness, and the elimination of coercion)

Negotiating ground rules at the beginning of the online meeting is particularly important. These rules ensure that everyone participating adheres to shared general concepts that preserve the privacy and safety of all participants. Particularly when using online platforms, participants must be able to ensure that their privacy is upheld, that no one who was not specifically invited to the group can overhear or observe the group’s activity.

After each meeting, cofacilitators should debrief and reflect on key aspects of the group encounter. As peer support is a still in an early phase of innovation, an important role for any peer support program is to serve as a bridge between the world of the COVID-19 survivor and the acute care setting of the hospital: certain themes that emerge from survivors can facilitate intra-ICU and in-hospital care improvements for future COVID-19 patients.³⁰ Peer support programs can create new roles for COVID-19 survivors in the hospital setting and help improve the morale of the acute care staff.³⁰ Program leaders should also have a plan to systematically collect quantitative or qualitative feedback from the participants and be willing to disseminate information about both their successes and their failures.^31,32

Summary

The COVID-19 pandemic will require health systems to test interventions to improve the recovery and social integration of adult survivors of COVID-19. Peer support is a complex intervention that allows COVID-19 survivors to give and receive practical and emotional support in relationship with other survivors of acute illness. The growing expertise within CAIRO can be leveraged by stakeholders interested in starting and sustaining a peer support program for COVID-19 survivors.