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AACN Advanced Critical Care

Volume 27, Number 2, pp. 221-229


© 2016 AACN

Peer Support as a Novel Strategy to


Mitigate Post–Intensive Care Syndrome
Mark E. Mikkelsen, MD, MSCE Aaron E. Bunnell, MD

James C. Jackson, PhD LeeAnn M. Christie, RN, MSN

Ramona O. Hopkins, PhD Steven B. Greenberg, MD

Carol Thompson, PhD, DNP, ACNP Daniela J. Lamas, MD

Adair Andrews, RN, MATD Carla M. Sevin, MD

Giora Netzer, MD, MSCE Gerald Weinhouse, MD

Dina M. Bates, MD Theodore J. Iwashyna, MD, PhD

ABSTRACT
Post–intensive care syndrome, a condition state of critical care survivorship is described,
defined by new or worsening impairment and postdischarge care delivery in the
in cognition, mental health, and physical United States and the potential impact of
function after critical illness, has emerged the present-day fragmented model of care
in the past decade as a common and life- delivery are detailed. A novel strategy that
altering consequence of critical illness. New uses peer support groups could more
strategies are urgently needed to mitigate effectively meet the needs of survivors of
the risk of neuropsychological and func- critical illness and mitigate post–intensive
tional impairment common after critical ill- care syndrome.
ness and to prepare and support survivors Keywords: critical illness; survivorship;
on their road toward recovery. The present quality of life; resilience; peer support

Mark E. Mikkelsen is Assistant Professor, Department of Aaron E. Bunnell is Assistant Professor, Department of
Medicine, Center for Clinical Epidemiology and Biostatistics, Rehabilitation Medicine, University of Washington, Seattle.
Perelman School of Medicine at the University of Pennsyl- LeeAnn M. Christie is Research Scientist, Dell Children’s
vania, Gates 05042, 3400 Spruce Street, Philadelphia, PA Medical Center of Central Texas, Austin.
19104 (mark.mikkelsen@uphs.upenn.edu).
Steven B. Greenberg is Clinical Associate Professor, North-
James C. Jackson and Carla M. Sevin are Assistant Professors, Shore University HealthSystem, Evanston, Illinois.
Department of Medicine, Vanderbilt University School of Daniela J. Lamas is Clinical/Research Fellow and Gerald
Medicine, Nashville, Tennessee. Weinhouse is Assistant Professor of Medicine, Division of
Ramona O. Hopkins is Clinical Research Investigator, Pulmonary and Critical Care Medicine, Brigham and Women’s
Department of Medicine, Center for Humanizing Critical Hospital, Boston, Massachusetts.
Care, Intermountain Medical Center, Murray, Utah and Theodore J. Iwashyna is Associate Professor, Department of
Professor, Psychology Department and Neuroscience Internal Medicine, University of Michigan, Center for Clinical
Center, Brigham Young University, Provo, Utah. Management Research, Department of Veterans Affairs, Ann
Carol Thompson is Professor, College of Nursing, Arbor, Michigan, and Australian and New Zealand Intensive
University of Kentucky, Lexington. Care Research Centre, Department of Epidemiology and Pre-
ventive Medicine, Monash University, Melbourne, Australia.
Adair Andrews is Quality Implementation Program
Manager, Society of Critical Care Medicine, Mount The work was supported in part by the National Institutes of
Prospect, Illinois. Health, National Heart, Lung and Blood Institute Loan Repay-
ment Program, Bethesda, MD (M.E.M.) and the Health Ser-
Giora Netzer is Associate Professor, Division of Pulmonary
vices Research and Delivery Service of the Department of
and Critical Care Medicine and Department of Epidemiol-
Veterans Affairs (T.J.I., IIR 11-109). The 6 inaugural Society of
ogy and Public Health, University of Maryland, Baltimore.
Critical Care Medicine Peer Support Collaborative sites were
Dina M. Bates is Assistant Clinical Professor, Division of awarded seed grants.
Pulmonary, Critical Care, and Sleep Medicine, University
of California San Diego School of Medicine. DOI: http://dx.doi.org/10.4037/aacnacc2016667

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P ost–intensive care syndrome (PICS), a


condition defined by new or worsening
impairment in cognition, mental health, and
activities of daily living (ie, activities that
allow a person to live independently such
as finances and medication management),
physical function after critical illness,1,2 has afflicts 27% of survivors at 12 months.5 The
emerged as a common and life-altering conse- result is that the majority of survivors of
quence of critical illness.3-6 Unfortunately, PICS critical illness appear to suffer from PICS.1-6
is also resistant to change, with several rand- In addition to cognitive, mental health, and
omized controlled trials showing no benefit physical impairments, critical care survivor-
of various promising strategies.7-12 New strat- ship frequently encompasses chronic pain,20,21
egies are urgently needed to mitigate the risk sexual dysfunction,22 disability, financial
of neuropsychological and functional decline loss,23 and inability to return to work,9,23-25
after critical illness and to prepare and sup- all of which culminate in reduced health-
port survivors on their road toward recovery. related quality of life in survivors.23,26
In this article, we outline the present state Qualitative studies of patients with severe
of critical care survivorship. We focus on the sepsis and acute respiratory distress syndrome
impairments and vulnerabilities of this popu- and their caregivers have illuminated the
lation of patients. We then detail postdischarge present-day experience of critical care survi-
care delivery in the United States and the poten- vorship.27-29 Survivors and their caregivers
tial impact of the present-day fragmented crave information at each step of recovery,29
model of care delivery. To bridge the gap yet frequently lack the knowledge required
between what survivors currently experience to understand what they have experienced
and what is needed, we offer a novel strategy and what to expect. Survivors struggle with
that uses peer support groups and may more the enduring impact of critical illness on their
effectively meet the needs of survivors of own health and the impact on caregivers.
critical illness. They lament the lack of support after discharge
to tend to or learn to cope with their ongoing
Critical Care Survivorship health needs and lack of independence.27,28
In the United States alone, approximately Although additional studies are necessary to
5.7 million adult patients are cared for fully grasp the challenges experienced by sur-
annually in an intensive care unit (ICU),13 vivors, and to identify strategies that facilitated
and nearly 1 million of these patients will recovery, the available evidence provides a
require mechanical ventilation.14 Advances blueprint for what survivors need.
in care have improved survival, resulting in
millions of critical care survivors being dis- Post-ICU Follow-up
charged back into the community each year. Contemporary follow-up of ICU survivors
Many survivors experience new or worsening in the United States is fragmented and unco-
functional impairments, leading some experts ordinated.30-32 The fragmentation is charac-
to herald these developments as a “hidden terized by poor communication between care
public health disaster”15 even as they praise providers,29-31 a reality exacerbated by the
the remarkable success of critical care medi- multitude of discharge destinations for survi-
cine in reducing short-term mortality. vors and high rehospitalization rates.32-35
While strategies evolve to improve communi-
PICS Sequelae cation between acute care and primary care
At the time of hospital discharge, 46% providers,31 and integrated electronic health
to 80% of survivors experience cognitive records should facilitate this important pro-
impairment.16,17 At 3 and 12 months after cess improvement, PICS and other sequelae
discharge, 40% and 34%, respectively, of of critical illness remain underrecognized,
previously healthy survivors remain impaired understudied, and underfunded. A small
to a degree that would be consistent with mod- number of ICU follow-up clinics have been
erate traumatic brain injury.3 At 12 months, established in the United States to combat
clinically significant symptoms of anxiety, this fragmentation.36 These clinics draw on
depression, and posttraumatic stress disorder 2 decades of experience from the United King-
are present in 20% to 30% of survivors.4,18,19 dom37 and incorporate into clinical practice
Functional impairment, defined as impairment the identification of neuropsychological and
in activities of daily living and instrumental physical problems and timely referral to other

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health care providers. Although conceptually about recovery. We define ICU survivors in
appealing, the effectiveness of nurse-led ICU this context—in contrast to our technical use
follow-up clinics in the United Kingdom was above—as patients and their loved ones who
not demonstrated when tested.38 More proxi- have emerged from critical illness. We believe
mally, in a separate trial, increasing physical that the continuum of survivorship begins at
and nutritional rehabilitation during the ICU admission and may continue for years or
post-ICU acute hospital stay did not result decades afterward. We define peer support as
in improved physical recovery or quality of the process of providing empathy, offering
life as measured by the Short Form 36 Health advice, and sharing stories between ICU sur-
Survey.11 However, germane to the constructs vivors. Peer support is founded on the princi-
of preparation and support, the intervention ples that both taking and giving support can
that was paired with informational content be healing if done with mutual respect. Peer
delivery led to improved patient satisfaction support is centered on the notion that survi-
with physical and nutritional support, coordi- vors can help each other through problems
nation of care, and preparation at discharge.11 and have the willingness to do so. Peer sup-
Additional studies drawing on the lessons port is not a clinician-centered model; the role
learned from these seminal trials are needed. of clinicians is to help provide the safe space
Issues of survivorship are rarely addressed in which survivors can work together to dis-
during the period of critical illness.39 As knowl- cover what they share to help each other.45,46
edge translation is notoriously slow, outpa- The potential benefits of peer support
tient providers are most likely unaware of emanate from the establishment of a commu-
PICS and thus are even less likely to address nity that promotes health and well-being
issues of survivorship. The result is that mil- through the shared experience of illness and
lions of survivors of critical illness are being recovery. The potential benefits, applied to
discharged into the community, unprepared survivors of critical illness, are many: mental
and uneducated about what to expect and reframing (hope, optimism), effective role
how best to cope, adjust, and recover. Impair- modeling, information sharing, and practical
ments will therefore frequently go unrecog- advice that is not readily available to health
nized and/or undermanaged. A substantial care professionals at present.45,46 Peer support
burden will fall on their informal caregivers,23 has proven effective in people with mental
many of whom may be struggling with their health disorders and substance abuse issues,45,46
own emotional sequelae from their ICU in the self-management of diabetes,47 and
experience. Family members and caregivers among cancer survivors.48,49 It can lead to
are not immune to the psychological trauma empowerment, self-advocacy, and improved
of the ICU; in fact, they are also vulnerable outcomes. However, although “authentic
to developing a form of PICS known as post– empathy,” “validation,” and “acceptance”
intensive care syndrome–family (PICS-F),40-42 are important contributions offered by the
which includes mental health consequences peer support model,45 programs that formally
and may include physical symptoms and integrate education into the program appear
social isolation. to be the most valuable.50 In the near future,
Novel strategies to augment survivors’ social sharing effective coping and compensation
support structure may be important to pro- strategies by health care providers and peers
moting a culture of resilience.43,44 These strate- may accelerate recovery further.51-53
gies would complement initiatives that aim As survivors and their caregivers have
to improve survivors’ physical and neuropsy- first-hand experience of the challenges that
chological well-being. Additionally, these strat- survivors face, these individuals are well suited
egies could also facilitate coordination between to educate and prepare peer survivors for
inpatient and outpatient settings. Peer support certain aspects of the recovery process. In
has the potential to fulfill these imperatives. addition, because spirituality and religion
appear to be important in survivors’ support
Peer Support networks,6 and given the reluctance of health
We propose that peer support for ICU care providers to engage in the spiritual aspects
survivors may serve a crucial role in both of illness and recovery,54 peer support groups
improving the recovery of current survivors may be a vehicle through which these aspects of
and in accelerating the progress of knowledge recovery can be explored and acknowledged.

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Table 1: Structural Principles Recommended for Incorporation Into Models of Peer


Support for Survivors of Critical Illness

Voluntary participation
Open to all who self-designate as survivors of critical illness
Led by health care providers and/or survivors with a firm grasp of the emerging survivorship literature
Free-standing or designed to complement follow-up clinics after discharge from intensive care unit
Designed to provide educational content in addition to support
Creativity to try group activities to foster support and relationships
Flexibility to adapt the meetings to the needs of the assembled group

Although the challenges experienced may mentorship. This area is one of the many in
differ between the adult, pediatric, and neo- need of empirical evidence.
natal populations, the principles of peer sup- Meetings should be held at a mutually con-
port and the inherent potential of this strategy venient time for survivors, peer support leads,
apply to each group, including hundreds of and clinical staff who may serve as coordi-
thousands of pediatric and neonatal survivors nators and/or moderators. The anticipated
of critical illness. duration of the meetings is 60 to 90 minutes.
Engaging facilitators who have experience with
Structure and Process of peer support in other venues (eg, oncology
Survivor Support Groups patients) early in the process may be useful to
The ideal structure, process, and timing of align expectations and guide design strategy.
support groups for survivors of critical illness Given the frequency of psychological distress
is unknown—a fact that bears emphasis. We among survivors of critical illness, holding
remain at a fluid, innovative stage of discov- meetings away from the ICU—possibly even
ery as to how peer support is best used after away from the hospital—may be preferable.
critical illness. An urgent need and opportunity The format of meetings most likely begins
for creative practitioner/survivor combina- with general introductions and explanation
tions exists to invent a new layer of post-ICU of ground rules (eg, confidentiality), followed
support and then evaluate it rigorously. Some by shared experiences and encouraging survi-
general structural principles we recommend, vors to share what would be most helpful to
drawn from the general peer support litera- them. To draw survivors in, a dedicated lon-
ture45-40 and applied specifically to survivors gitudinal curriculum that addresses various
of critical illness, are included in Table 1. aspects of the survivor experience should serve
Whether and how the needs of former as the foundation for meetings. However, to
patients and caregivers would be expected facilitate shared group discussion, moderators
to differ is unknown. It is conceivable that should aim to encourage open dialogue and
stress experienced by one group (ie, caregiv- be open to go where the experience of those
ers) may be the result of impairments incurred present leads the group. The frequency of
by the other (ie, survivors) or vice versa. If meetings will depend on the target audience,
so, distinct support groups may be ideal. logistics, and the availability of volunteers
Yet it is plausible that combined meetings, and staff. For example, peer-to-peer support
in the presence of those further along the groups embedded within ICU follow-up clinics,
path of recovery, could be therapeutic and or juxtaposed to clinical settings (eg, long-term
beneficial and mitigate both PICS and PICS-F. acute care hospitals), may stimulate the demand
Alternative options include a combined to schedule one or more meetings per month.
model in which both patients and their family
members meet together for part of the meet- Unique Challenges in
ing and then separately for part of the meeting Survivors of Critical Illness
to address the unique needs of the patients The precise problems that create the need
and caregivers or individual peer-to-peer for in-person peer support can make attending

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Table 2: Challenges of Survivors of Critical Illness and Possible Mitigation Strategies


for Use in Peer Support Groups

Challenges Possible Mitigation Strategies References


Cognitive impairment Awareness, adjustment, and coping strategies for 1-4, 16, 17, 25, 27-30
survivor and caregiver
Empathy toward survivor and caregiver
Encourage rehabilitation and compensation training
Practical advice for obtaining a referral to a
neuropsychologist
Practical advice on use of memory aids, ways to
break complex practical problems (doing the
shopping) into easier tasks
Anxiety Awareness, adjustment, and coping strategies for 1, 2, 4, 5, 18, 19,
Depression survivor and caregiver 27-30
Posttraumatic stress disorder Empathy toward survivor and caregiver
Practical advice for obtaining a referral to a psychol-
ogist or psychiatrist to discuss medication and
nonmedication (cognitive-behavioral) therapy
Physical impairment, includ- Awareness, adjustment, and coping strategies for
ing immobility, impairments survivor and caregiver 1-5, 20, 21, 27-30
in activities of daily living Empathy toward survivor and caregiver
and instrumental activities of Practical advice for obtaining a referral to receive
daily living, and chronic pain physical and/or occupational therapy
Shared experience with assistive devices (eg,
showerheads and chairs, stools, walkers)
Negative financial impact Empathy toward survivor and caregiver
Practical advice for obtaining a social work or 23, 27-30
community health referral
Connection to local charities

in-person support group meetings challeng- critical illness is that it is frequently acute and
ing. A brief list is provided in Table 2, along unexpected. In its wake, therefore, critical ill-
with potential mitigation strategies to discuss ness often leaves survivors with new impair-
at meetings. Moreover, after critical illness, ments that they are not equipped or prepared
many survivors are in and out of various forms to handle. This unique challenge must be
of health care venues, including long-term acknowledged within critical care survivors
acute care hospitals or skilled care facilities. broadly and peer support models specifically.
Frequent readmissions to the hospital or Sustainability of peer support groups
ICU32-35 and high short-term mortality55-57 requires engaged and active peer support
further this challenge. leadership. Given the frequency and severity
For survivors with functional impairments, of impairments, some if not many survivors
which may include problems with mobility will be physically, mentally, or emotionally
and driving, caregiver involvement and par- unable to serve in this role. For those survi-
ticipation will frequently be required to per- vors who are physically and mentally able to
mit the survivor to attend in person. Further, serve as leads, they may not be able to relate
as noted previously, survivors with anxiety completely or to coach survivors with more
and posttraumatic stress disorder may be severe injuries and disabilities as effectively
reluctant to attend meetings if scheduled at as those with lesser impairments. Given the
or near the ICU or hospital where the patient economic consequences of critical illness and
was admitted. Unlike other populations (eg, the toll that it takes on survivors and their
cancer survivors), who may have had time to caregivers,23 the ability to attend meetings in
process their illness and their recovery and a voluntary fashion may be cost prohibitive.
to perform advanced planning, the nature of For these reasons, virtual support is a plausible

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alternative that warrants investigation; however, to invent this future together. It is, by design,
its utility in other populations has not been improvisational. In some ways, the collabora-
established.58 If centers of recovery emerge tive is a support group for usually evidence-
as an effective and financially solvent model, based clinicians busy working in an area
incorporating ICU staff and survivors into without any evidence yet. The collaborative’s
peer support staff as full-time employees or start-up culture is balanced by reporting to
volunteers, as done successfully in mental the broader SCCM Thrive initiative and to
health clinic models,45 may be prudent. SCCM’s executive committee. Each year, the
collaborative will share its current state of
Design and Development of a the art at SCCM’s annual congress and work
Peer Support Collaborative to codify best practice in ways that can be
In 2015, the Society of Critical Care Medi- scaled up and shared broadly.
cine (SCCM) initiated the Thrive Supporting We expect that in several years the evidence
Survivors of Critical Illness initiative. Thrive base will be sufficient to propose definitive
has 3 pillars: a peer-support collaborative, clinical trials to evaluate alternative models
expanding research into recovery, and edu- of peer support. However, premature conduct
cation within and outside the ICU around of such evaluative trials—before the techniques
PICS.59 The peer-support collaborative began of peer support have developed sufficiently
with an international call for applications, to warrant testing—is not part of the collabo-
the first action of the Thrive group. In the rative’s mandate.
fall of 2015, 6 inaugural sites were awarded
on the basis of their innovative and team- What to Expect
oriented design to implement, collaborate, Based on the experience in the support
and assess the effectiveness of peer-to-peer group context and otherwise at the Vander-
support groups applied to survivors of critical bilt Recovery Clinic, Intermountain Medical
illness and their caregivers. The 6 sites include Center,60 and Toronto General Hospital,29,30,61,62
5 adult hospitals and 1 pediatric hospital. several recurrent themes should be anticipated
We expect to expand the collaborative by 5 when implementing a peer-support group.
new sites each year for at least 2016 and 2017, Chief among these relates to identity—that
balancing the needs of group cohesion with is, survivors grapple with questions related
tremendous interest in participation. to who they are after intensive care. Acutely
The aim of the collaborative is to catalyze aware of new cognitive deficits, personality
the development of a network of pioneer changes, and physical limitations, survivors
in-person support groups, testing the feasibil- frequently struggle in a quest to cope with
ity of peer support and amassing a body of loss and to define and eventually embrace a
proven experience and skills to grow and “new normal.” Even as they look ahead and
support survivors of critical illness. The under- brace for an unfamiliar future, they are regu-
lying model of the peer-support collaborative larly buffeted by feelings of frustration, guilt,
is itself a form of collaborative peer support— and regret—sometimes for poor health deci-
that the leaders of the 6 sites convene monthly sions that led to critical illness and sometimes
to share successes and challenges and to brain- for contributing to the distress of family mem-
storm solutions. The site leaders are joined bers. Regardless of prior health status, they
on the monthly calls by SCCM staff and an tend to be preoccupied with health concerns,
international group of experts to be available leading to vigilance, social disengagement, and
as a resource for the sites. As the collaborative withdrawal. In many cases, they feel powerless
matures, the aim is for formal monthly com- and victimized by circumstances, a dynamic
munications to parallel frequent and informal that can result in decreased self-efficacy and
idea exchanges and mentoring between sites. a burgeoning sense of helplessness.
These efforts at group cohesion are facilitated Facilitating support groups made up of
by annual site visits by SCCM staff and a mem- individuals struggling with the aforementioned
ber of the Thrive initiative, and in-person issues is both satisfying and challenging.
meetings at SCCM’s annual congress. Although successful group facilitators share
A basic principle of the peer-support collab- certain characteristics regardless of the patient
orative is that no evidence base for providing population in question—traits such as the abil-
peer support to ICU survivors exists. We need ity to forge close connections and to relate to

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others in a nonjudgmental fashion—effective This work does not necessarily represent


leaders of post-ICU support groups should the official views of the US Government or
possess specialized knowledge. In particular, the Department of Veterans Affairs.
facilitators need to anticipate the natural his-
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