Building Resiliency in Dyads of Patients Admitted to the Neuroscience Intensive Care Unit and Their Family Caregivers: Lessons Learned From William and Laura

Abstract

Sustaining a stroke, regardless of its severity, is a life-changing and often traumatizing event that can lead to chronic depression, anxiety, and posttraumatic stress in both survivors and their family caregivers. Psychosocial interventions for emotional distress after stroke are limited, have emphasized psychoeducation rather than skills, treatment of chronic emotional distress rather than prevention, and have targeted either the patient or their caregiver without accounting for the context of their interpersonal relationship. Here we discuss “Recovering Together,” a novel program for dyads of patients with stroke and their family caregivers aimed at preventing chronic emotional distress by using cognitive behavioral principles to teach resiliency and interpersonal communication skills beginning during hospitalization in a neuroscience intensive care unit and continuing after discharge via telehealth. We illustrate the case of a pilot dyad enrolled in the Recovering Together program, to showcase how patients and caregivers can engage with and benefit from it. This dyad’s experience suggests that Recovering Together is credible, feasible, and useful. The potential dyadic benefit of this intervention lies not only in providing the opportunity to optimize recovery and prevent long-term emotional distress, but also in creating the space to come together as a pair and make meaning from critical illness.

Each year millions of hospitalized patients require ICU-level care, and with advances in medical care, increasing numbers of patients are surviving their ICU stays (Needham et al., 2012). Thus, more and more patients and their family caregivers (family and friends who provide the bulk of unpaid patient care) suffer from the psychological ramifications of what is increasingly understood to be a source of trauma. Rates of emotional distress during hospitalization are high for patients (anxiety 12%–43% [Cheung et al., 2006; Kress et al., 2003; Jackson, Mitchell, & Hopkins 2001; Shaffer, Riklin, Stagl, Rosand, & Vranceanu, 2016], depression 10%–58% [Cheung et al., 2006; Daydow, Gifford, Desai, Bienvenu, & Needham, 2009; Shaffer et al., 2016], posttraumatic stress 20%–29% [PTS; Jackson et al., 2007; Jackson et al., 2011]) and caregivers (anxiety, depression, or PTS 27%–60% [Choi et al., 2013; Choi et al., 2018; McAdam, Fontaine, White, Dracup & Puntillo, 2012; Shaffer et al., 2016; Shaffer et al., 2017;]), remain high (Choi et al., 2018), and often become chronic and treatment resistant (Collins et al., 2011; World Health Organization, 2002).

In stroke survivors, higher levels of distress are associated with poor medical adherence (Edmondson et al., 2013), slower recovery (Ayerbe, Ayis, Wolfe, & Rudd, 2013; Carod-Artal & Egido, 2009; Edmondson et al., 2013), higher mortality (Ayerbe et al., 2013; Bartoli et al., 2013; Carod-Artal & Egido, 2009), and greater caregiving need (Denno et al., 2013). In turn, this increases caregiver distress (Bakas & Burgener, 2002; Carod-Artal & Egido, 2009; Monin et al., 2016), as well as morbidity (Ji, Zöller, Sundquist & Sundquist, 2012; Lee et al., 2003) and mortality (Schulz & Beach, 1999). Poor caregiver well-being reduces their ability to provide high-quality care to patients (Beach et al., 2005; Turner-Stokes & Hassan, 2002) and negatively impacts patient outcomes. Importantly, symptoms of psychological distress have been shown to be interrelated among patients and their family caregivers (Shaffer et al., 2016; Shaffer et al., 2017). Emotional distress in one member of the dyad during hospitalization predicts chronic emotional distress in at least one dyad member up to 6 months later (Choi et al., 2018). To fully understand the psychosocial impact of stroke, then, it is crucial to consider the context of the patient-caregiver dyad.

Prior work with neuro ICU patients and their caregivers also shows that the resiliency factors of mindfulness, coping, self-efficacy, and closeness of bond with the dyadic partner are associated with lower emotional distress and higher quality of life during acute hospitalization (Shaffer et al., 2016b; Zale et al., 2018). At 3- and 6-month follow-up, however, the significance of these factors fades and ICU distress becomes the best predictor of chronic emotional distress (Choi et al., 2018; Zale et al., 2018). The ICU stay, then, presents itself as a “window of opportunity” to bolster resiliency skills and prevent chronic distress. Just as distress is interrelated between dyad members, the resilience of one individual can be protective for their partner (Shaffer et al., 2016). Thus, interventions that address resiliency skills in patients and their caregivers early in the recovery process have the potential to prevent the development of chronic distress in both members of the dyad, and thus optimize their physical recovery as well as adjustment to physical or cognitive sequelae.

Interestingly, despite this promise, psychosocial interventions targeted at relieving distress among ICU patients and/or their family caregivers have largely been unsuccessful. Cognitive behavioral therapy (CBT)-based interventions (Berkman et al., 2003; Glass et al., 2004; Wade et al., 2019) have not shown improvement in depression, anxiety, or PTSD symptoms. In stroke patients specifically, the FIRST trial, which used a family systems approach to promote social inclusion and problem solving across a wide-ranging group of patients, family members, friends, and interdisciplinary providers, did not demonstrate improved functional outcomes in patients at 6-month follow-up (Glass et al., 2000; Glass et al., 2004). More recently, a stepped wedge cluster-randomized clinical trial testing ICU staff-provided emotional and decision making support of surrogates of incapacitated critically ill patients did not show improvement in longitudinal psychological distress levels in surrogates (White et al., 2018). There remains a need for effective psychosocial interventions for critically ill patients and their family caregivers.

In response to this need, the American Heart Association/American Stroke Association published evidence-based recommendations for skills-based dyadic interventions specifically for stroke patients and their family caregivers (Bakas et al., 2014). While a number of family interventions have been published since (Bakas et al., 2017), they largely target caregiver behaviors such as problem solving or specific care skills (e.g., positioning, transfer safety, mobility assistance; Bakas et al., 2015; Forster et al., 2013; Hirsch, Leyh, Karch, Ferlings & Schäfer, 2014; Pfeiffer et al., 2014) and emphasize individual—typically patient—rather than dyadic outcomes (Bakas et al., 2017). Therefore, these interventions labeled as “dyadic” are not consistent with the dyadic framework (Savini et al., 2015), which specifies that dyadic interventions should address dyads within the context of their relationship and account for the interrelatedness of patient and caregiver emotional factors, coping, and interpersonal bond. Truly dyadic approaches in which patient and caregiver participate in each session together and that target outcomes for both parties remain lacking (Bakas et al., 2017).

Recovering Together: A Novel Dyadic Skills-Based Intervention

This paper describes Recovering Together, the first dyadic skills-based intervention aimed at preventing chronic emotional distress in at risk dyads of stroke patients and their caregivers. Recovering Together uses a combination of cognitive behavioral skills. Early sessions are focused primarily on helping dyads manage the uncertainty of hospitalization through emotional regulation, relaxation, mindfulness and self-care skills. Later sessions are building on the foundation laid in the hospital and entail higher-level skills such as goal setting, stroke-specific thought restructuring, problem solving, strategic self-care, and interpersonal communication. The overarching goals of Recovering Together are to encourage positive cognitive, behavioral, and interpersonal changes throughout recovery.

Conceptual Framework

Recovering Together is grounded in four fundamental theories: (a) the response-shift theory of adaptation to illness (successful adaptation to adversity implies a change in values, goals, internal standards, and conceptualization; Barclay-Goddard, King, Dubouloz, & Schwartz, 2012); (b) the family strength-vulnerability model (within dyads relational systems have strengths and weaknesses in coping; Shields, King, & Wynne, 1995); (c) the dyadic longitudinal model (distress is interdependent between dyad members and travels from one member of a dyad to the other over time; Savini et al., 2015); and (d) resiliency framework (focusing and reinforcing individual and interpersonal strengths to bolster adaptation to adversity; Bonanno et al., 2007). Our conceptual model hypothesizes that dyads who are at risk for chronic emotional distress may benefit from resiliency and interpersonal communication skills to help them navigate the acute phase of a patient’s illness, starting in the hospital and continuing after discharge at home or in rehabilitation centers. By providing dyads with space and skills early in the recovery process, the Recovering Together intervention is designed with the aim of sustainably decreasing emotional distress in both patients and their caregivers and optimizing recovery regardless of the severity of physical and cognitive stroke sequelae. This approach uses elements of traditional CBT, Dialectic Behavioral Therapy (DBT; Linehan et al., 2015) and mind-body approaches, to meet the unique needs identified by stroke patients and neuro ICU staff during qualitative interviews and focus groups (McCurley et al., 2018), and aims to help individuals from hospitalization through discharge.

The intervention centers on skills-based sessions in which dyad members jointly learn tools for resiliency after trauma. These resiliency skills include (a) mindfulness—the ability to remain present and defer judgment in the face of adversity (Brown & Ryan, 2003); (b) coping—building the applying the toolkit of behavioral, cognitive, and emotional strategies to manage stress (Shaffer et al., 2016); (c) self-efficacy—one’s perceived ability to adapt under stress (Korpershoek, van der Bijl, & Hafsteinsdóttir, 2011); and (d) positive dyadic interpersonal communication to increase interpersonal bond (McCarthy, Lyons, & Powers, 2012). On a practical level, our approach is twofold. The early sessions, which take place in the ICU, follow a crisis intervention approach, drawing on relaxation, dialectics, and mindfulness skills, to help manage intense emotions and ground dyads in the present moment. These sessions rely less on cognitions, given the stress of the ICU and the seriousness of the patient’s medical condition, and problem-solving, as sources of stress in the ICU are often beyond the patient or caregiver’s control. Instead, emphasis is placed on bolstering distress tolerance to help the participants through the acute hospitalization phase of their trauma. Postdischarge sessions use more traditional cognitive-behavioral skills, including thought restructuring, problem solving, strategic self-care, interpersonal communication, and goal setting.

Intervention Development

Recovering Together was developed via a mixed-methods approach. Quantitatively, the groundwork for the program was laid through a longitudinal prospective study of neuro ICU patients and their family caregivers. We measured patients’ and caregivers’ anxiety, depression, and posttraumatic stress symptoms during neuro ICU hospitalization and at 3- and 6-month follow-up, and assessed resilience factors (mindfulness, coping, self-efficacy, and interpersonal bond) at baseline. Cross-sectional and longitudinal analyses of this cohort revealed that levels of distress are high acutely, remain high through follow-up, and are interdependent (Choi et al., 2018; Meyers et al., 2019; Shaffer et al., 2016b; Zale et al., 2018). We also confirmed that resilience is protective against the development of chronic emotional distress, and that one’s partner’s resilience can also help prevent distress acutely (Meyers et al., 2019; Shaffer et al., 2016). Thus, we identified that a resilience skills-based intervention early in the recovery process could be beneficial in this population.

While numbers helped quantify the problem and identify a potential intervention target, they are not the whole story. An extensive understanding of the unique concerns of neuro ICU patients and their caregivers was required to ensure that Recovering Together appropriately address this population’s needs. In a previously described qualitative study (McCurley et al., 2018), we conducted interviews with 24 patient-caregiver dyads during their neuro ICU hospitalization for stroke, and conducted two focus groups with 15 neuro ICU bedside nurses who care for patients and their families. The chief themes that emerged from conversation with the dyads were (a) difficulty managing the uncertainty of the recovery process; (b) difficulty coping with emotional distress; and (c) the multiple sources of emotional distress during an ICU stay. Dyads endorsed interest in an intervention that centered on adaptive thinking to cope with negative emotions, tolerance of uncertainty, mindfulness skills, adjusting to a new normal after stroke, and meaning making. This feedback was incorporated into the design of Recovering Together, with session topics and content (see below) chosen to address these most frequently articulated concerns. Both dyads and nurses helped identify and problem-solve around barriers to participation and implementation—including concerns around the time commitment of participation, already high levels of caregiver burden, and the necessity of travel for in-person sessions—that were integrated into the development of the Recovering Together protocol. For instance, the decision was made to conduct postdischarge sessions via telehealth rather than in person to reduce the travel burden of participation. A full discussion of these themes has been published by McCurley and colleagues (2018). The Recovering Together protocol was then tested with an open pilot dyad before initiating a feasibility randomized clinical trial versus a minimally enhanced control.

Eligibility

Recovering Together was initially implemented as an American Heart Association–funded feasibility-phase randomized clinical trial versus a minimally enhanced control. Eligible participants were dyads consisting of adult patients (≥18 years of age) hospitalized in the neuro ICU with the diagnosis of stroke and their primary family caregiver (family or friend who provides the bulk of unpaid care). At least one member of each dyad endorsed clinically significant symptoms of depression (Hospital Anxiety and Depression Scale [HADS] depression >7), anxiety (HADS anxiety >7), or PTS (using PTSD Checklist [PCL] with algorithm linked to DSM-V diagnostic criteria rather than composite score). Patients were medically and cognitively cleared for participation by IUC nursing staff. Cognitively appropriate patients were alert and oriented, and had no major deficits (e.g., aphasia, significant memory impairment) that would preclude meaningful engagement with the program content and clinician. Patients with mild cognitive impairment (e.g., inattentiveness, functioning below pre-stroke cognitive baseline) and any degree of physical deficits were eligible, as it was felt that these patients and their caregivers would benefit from the skills taught in the program as they adjust to life with stroke sequelae. Nursing staff assisted in determining eligibility, and the best timing for the hospital sessions to avoid burden on patients and families and maximize patient’s ability for meaningful session participation.

Measures

As part of the clinical investigation, measures of emotional distress, resiliency, and interpersonal functioning were administered pre- and posttreatment, as well as at a 3-month follow-up.

To quantify emotional distress, patients and caregivers completed the Hospital Anxiety and Depression Scale (HADS) and PTSD Checklist-specific stressor (PCL). The HADS is a 14-item scale designed to identify possible and probable anxiety and depression among nonpsychiatric hospital populations by filtering out “noise” from somatic symptoms that may be related to physical rather than psychological disorder (Zigmond & Snaith, 1983). Items on the depression and anxiety subscales are answered on Likert-like scales from 0–3, with higher total scores indicating more significant symptoms. Possible or probable clinical depression or anxiety is indicated by a subscale score >7 (Bjelland, Dahl, Haug, & Neckelmann, 2002). The PCL-S is a 17-item scale scored from 0 (Not at all) to 5 (Extremely) (Blanchard, Jones-Alexander, Buckley & Forneris, 1996). Caseness was determined through an algorithm linked to the DSM-V diagnostic criteria for PTSD.

Psychosocial resiliency factors were assessed in the patient and caregiver using the same measures. Mindfulness was measured by the Cognitive and Affective Mindfulness Scale (CAMS; Feldman, Hayes, Kumar, Greeson, & Laurenceau, 2007), a 12-item inventory that assesses the degree to which individuals use mindfulness skills (nonjudgmental awareness of thoughts and feelings) in daily life. The Measure of Current Status-A (MOCS-A), a 13-item assessment, was used to measure perceived ability and confidence in using coping skills, such as recognizing feelings of stress, changing negative thinking patterns, and choosing appropriate coping mechanisms (Carver, 2006). The potential protective factor of a strong interpersonal bond between the two dyad members was quantified using The Intimate Bond Measure (IBM), which evaluates participants’ perceptions about the quality of interaction between themselves and their dyadic partner on a spectrum from caring to controlling (Wilhelm & Parker, 1988). Measures of self-efficacy were specific to patient and caregiver roles. Patients completed the General Self-Efficacy Scale (GSES), a 10-point scale that evaluates perceived resourcefulness in facing challenging situations (Schwarzer & Jerusalem, 1991). Caregivers were assessed with the Revised Caregiving Self-Efficacy Scale (CSES-R), an inventory that specifically evaluates perceived ability to ask for emotional and functional support, meet the patient’s needs, and manage one’s own upsetting thoughts about caregiving (Steffen, McKibbin, Zeiss, Gallagher-Thompson, & Bandura, 2002).

As part of the feasibility-phase randomized clinical trial, post-intervention satisfaction was measured with the Client Satisfaction Scale (Attkisson & Zwick, 1982; Larsen, Attkisson, Hargreaves, & Nguyen, 1979). Exit interviews were conducted with participants. This feedback was used to refine the methodology of an ongoing, NIH funded, fully powered randomized clinical trial of Recovering Together.

Therapists and Intervention Setting

The Recovering Together intervention was carried out by two clinicians: an advanced psychology doctoral student clinician with experience delivering skills-based interventions in inpatient hospital settings, and a licensed clinical staff psychologist at the Massachusetts General Hospital. The doctoral student clinician received regular supervision from the staff psychologist.

Sessions 1 and 2 took place at the patient’s bedside in the neuro ICU. The subsequent 4 sessions occurred via telehealth with secure videoconferencing software (Vidyo) installed onto the patient and caregivers mobile or laptop devices prior to discharge from the hospital. This allowed participation to continue in rehabilitation hospital settings or at home, and for patients and caregivers to call into sessions from separate locations, if necessary. Telehealth was incorporated into the design of Recovering Together in response to concerns from patients and caregivers about the feasibility of travel to intervention appointments (McCurley et al., 2018).

Skills and Content

Treatment follows a manualized approach. The first two sessions are delivered at bedside uniformly to all dyads, with the content tailored to specific patient and caregiver concerns (e.g., severity of condition, length of hospitalization, transfer home versus rehabilitation center, identity of the caregiver). The next four sessions are delivered after discharge via secure telehealth. The therapist and dyads tailor the content of these sessions to their needs by selecting four modules from five available options. The therapist and patient work together in picking the modules. Importantly, Recovering Together hinges on the basic “common factors approach” of psychological interventions, allowing room within these modules for the clinician to provide relevant psychoeducation and to process difficult session content related to the dyad’s illness (Lambert & Barley, 2001). Throughout the intervention, the dyad is asked to keep a daily log of the skills they practice in between sessions. Patient and caregiver receive their own intervention manuals and participate in all sessions together. Sessions last approximately 30 minutes in order to fit more easily into the busy lives of patients and caregivers, and use simple language to introduce concepts. The content and skills taught in each session are outlined in Table 1.

Table 1.

Recovering Together Session Content and Skills

Session/Module #	Title	Session content & Skills
Session 1	Coping with the Here and Now	deep breathing, mindfulness, staying present, meditation and self-care
Session 2	Coping with Uncertainty	sticking with new habits, acknowledging contradictions, coping with worry, skills for acceptance and change
Module 3	Adjusting to Life After the Stroke	challenges adjusting to life after stroke, understanding stressors, and coping with stress
Module 4	Navigating Interpersonal Relationships	relationship roles and self-image after stroke, skills for acceptance and change, effective communication
Module 5	Adherence to Rehabilitation Regimens and Self-Care	sticking with your rehabilitation program, making time for self-care, setting SMART goals
Module 6	Fear of Recurrence	mindfulness strategies to cope with fear and worry, using the decision tree for acceptance and change
Module 7	Making Meaning from Our Experiences	exploring the stroke and post-stroke experience, balancing change and acceptance, mindset for recovery

Session 1: Coping With the Here and Now

The first session of Recovering Together aims to normalize the stressor of being in the neuro ICU and provide skills to cope with acute emotional distress. The clinician discusses how to recognize feelings of anxiety or panic by reviewing emotional and physiological signs, such as fear, racing heart and mind, and feeling like it is difficult to breathe. To cope with this intense reaction, the dyad is introduced to diaphragmatic breathing, a relaxation technique to decrease the sympathetic “fight or flight” response to stress by eliciting the “rest and digest” parasympathetic response.

Once awareness is brought to the experience of breathing, the clinician introduces the concept of mindfulness. Mindfulness skills draw from Dialectical Behavior Therapy (DBT; Linehan et al., 2015), where individuals use the model of Observe, Describe, Participate to promote emotional regulation and decrease distress. Dyads are asked to participate in a short exercise in which they are guided through a 3-minute mindfulness meditation focused on noticing breath, bodily sensations, and emotions. Since mindfulness skills are most helpful when practiced daily and consistently, the dyad is provided with recordings of this meditation to aid in their practice.

With new mindfulness skills now in play, the dyad then learns to focus on the present in the face of uncertainty. The clinician normalizes the tendency to worry about the future in an overwhelming and unproductive way. Instead, dyads are encouraged to “stay within the 24-hour block” by observing and describing their distress, validating both its purpose and place, and using mindfulness skills to reorient to the present moment experience. In this way, the dyad can remain connected to what is happening now—reducing worry and increasing the possibility of invoking more constructive coping mechanisms through mindfulness.

Session 1 ends with basic psychoeducation related to self-care for both the patient and the caregiver within the hospital and after discharge. The clinician asks the dyad to brainstorm ways in which they can carry out basic self-care activities related to sleep, diet, movement/exercise, increasing pleasant activities, and communication.

Given the high stress situation of the ANI and the neuro ICU, existing relationship dynamics can become more pronounced in this context. It is not uncommon for dyads to recapitulate old/historical relationship scripts, which can undermine the recovery process (e.g., arguing, avoiding, becoming defensive). Therefore, the clinician remains mindful of deviations from the manual and uses empathic redirection strategically while weaving skills of mindfulness, distress tolerance, and interpersonal effectiveness into the sessions. These dyadic issues can be revisited throughout all the sessions with explicit focus on utilizing skills, but they are not directly addressed as would be typical in a couple’s psychotherapy session.

Session 2: Coping With Uncertainty

Session 2 continues to help dyads cope with the uncertainty of recovery after a stroke by building comfort with holding conflicting thoughts simultaneously and facing ambiguity. The clinician introduces the concept of dialectics as a way of letting there be space for more than one thought or feeling at the same time, even if they seem to oppose one another. The dyad is encouraged to acknowledge “multiple truths,” and to replace “but” with “and.” The clinician presents example dialectics (e.g., “I can feel angry about my stroke and grateful to be alive at the same time”) and introduces Change and Acceptance as the most common dialectic experienced by dyads facing critical illness: how to accept what has happened and make the changes required in the moment. A decision tree is provided as a way of visually engaging with the Change/Acceptance dialectic to increase active coping. Dyads navigate the tree by identifying whether stroke-related thoughts or stressors are within their control or out of it, and are cued to accept and let go, reframe, or problem solve as appropriate. Mindfulness tenets of observe, describe, and participate are carried forward from Session 1 to help dyads engage with the Change/Acceptance paradigm, as well.

Dyads can often experience interpersonal issues in this session related to recovery goals (e.g., rehabilitation) and motivation (e.g., engagement in medical care). The clinician normalizes this feature of recovery and attempts to foster adaptive responding by coaching the dyad during their interpersonal interactions to “make room” for dialectics between partners and to explore what needs acceptance versus what needs change together.

The conclusion of Session 2 marks the end of the in-hospital portion of Recovering Together. Before moving forward to the outpatient sessions, the clinician and the dyad determine which 4 of the 5 remaining modules are most relevant to the dyad’s needs. These modules use the building blocks provided by Sessions 1 and 2 to discuss topics and skills relevant to each dyad. The selected modules may be completed in any order, based on the dyad’s preferences and needs.

Module 3: Adjusting to Life After the Stroke

The wide range of disability from stroke means that hospital discharge arrangements can vary between dyads: some patients may return home with relatively little impairment while others may be in rehabilitation care or other longer-term hospital settings. With this context in mind, Session 3 aims to address adjusting to the challenges that life after stroke presents, however large that adjustment is. The clinician normalizes that discharge from the hospital may be accompanied by its own new set of stressors, including losing the structure and safety of the inpatient environment and facing new assistance needs for daily activities. Together, the dyad observes and describes their stress to each other at the levels of thoughts, emotions, behaviors, and physical sensations, and draw on the CBT model of the interrelation among these factors as it pertains to their own responses to stress. In addition to identifying one’s own stress, a goal of this activity is to facilitate a conversation between patient and caregiver about one another’s responses to stress and, ultimately, to build a joint coping plan and improve the self-efficacy of the dyad as a unit. One common challenge that can emerge in this session is the caregiver’s anxiety of transitioning care—that is, either taking on more of the care responsibility when the patient returns home, or having to familiarize themselves with a new medical setting such as a rehabilitation hospital or skilled nursing facility. The clinician can help contextualize and normalize the uncertainties of transitions for the caregiver, as well as helping facilitate supportive conversations between the patient and caregiver moving forward.

Importantly, the emphasis in presenting this model is on empowering the dyad to use nonjudgmental awareness when they begin to examine their thoughts related to stroke and stress, rather than teaching the cognitive model itself. The clinician uses this as a segue to introducing cognitive restructuring (“Are there facts to support or disconfirm my thinking?”) and cognitive diffusion (“thoughts are not facts”; “feelings are not facts”) techniques when the dyad is feeling flooded with negative thoughts and emotions.

Module 4: Navigating Interpersonal Relationships

Role changes are a common source of interpersonal distress after stroke.

In Session 4, the clinician helps the dyad to identify the roles they held in their relationship prior to the stroke, determine whether these roles have changed or stayed the same, and consider how these changes may manifest in other social relationships. This session seeks to provide a thoughtful, therapeutic context in which role transitions can occur.

Mindfulness skills and dialectics from previous sessions are built upon to help facilitate this exploration of roles. Patients and caregivers are presented with the dialectic that they can accept and appreciate the relationship they have with their dyad partner and recognize that there can be room for that relationship to change. They are challenged to use nonjudgmental awareness to observe and describe relationship changes while defining goals for how they would like to participate in their relationships going forward.

The dyad participates in a self-image exercise where both patient and caregiver draw a “self-pie chart.” Each slice represents a part of the individual’s identity, and the size of the slice indicates the importance of that identity to the individual. The dyad is asked to consider if they have a new section of the circle that is part of the stroke experience, either as patient or caregiver. Visualizing the multiple facets of identity in such a way provides an opportunity for the dyad members to see themselves as multidimensional people rather than allow themselves to be defined fully by the stroke experience. With the big picture of their identities in mind, the clinician encourages the dyad to seek new balances between slices of the self-pie that might have changed after stroke using the Change/Acceptance dialectic, and encourages dyad members to work together to support each other through this process.

In the last part of this module, the dyad is asked to consider ways in which their communication has changed since the stroke and to explore new ways of communicating with one another. Borrowing from DBT skills of interpersonal effectiveness, the patient and caregiver practice working through communication conflicts by considering what they wish to achieve in their conversation with their dyad partner, what they want their relationships to look like after the conversation, and how they would like to feel about themselves (e.g., self-respect) in regards to their communication. Dyads are taught that not all of these goals may be met, such as in the case that the caregiver may not get what he/she is wishing to achieve, but they may still preserve their relationship and their own integrity during the conversation. These skills can leave dyads feeling more effective when navigating difficult conversations related to their ANI recovery journey.

Ingrained relationship dynamics or historical events (e.g., infidelity, family-of-origin difficulties) can influence both the relevance and flow of this session. Recovering Together navigates these conversations by reinforcing the recovery skills (e.g., mindfulness, dialectics) and redirecting to focus the scope of this module to the specific interpersonal adjustments related to the ANI event. Using our resiliency framework, the clinician focuses on bolstering the relationship by reminding the members of the dyad of the commitment they are showing by participating together in the sessions. It is possible that these skills may help foster healthy habits of communication outside of the recovery context and help dyads tackle prior relationship conflicts and concerns, but this is not within scope of Recovering Together.

Module 5: Adherence to Rehabilitation Regimens and Self-Care

Given the significant changes dyads experience in the aftermath of a stroke, finding the strength and motivation to stay active in the recovery process can be difficult. Session 5 introduces ways of increasing behavioral activation and goal setting to aid in the dyad’s rehabilitation and self-care. The patient and caregiver are asked to process a series of questions related to medical team recommendations, adherence to medical regimens, interpersonal roles assigned in recovery and the emotional stress related to these roles, and barriers to engagement and adherence. The dyad is reminded of the self-care strategies presented in Session 1 and asked to consider how these strategies have either changed or stayed the same since leaving the hospital. This reflection on their self-care strategies in intended to allow dyads to take stock of their habits and to set a foundation for SMART goals.

SMART goal setting (i.e., setting goals that are Specific, Measurable, Attainable, Realistic, and Time-based) is introduced to the dyad as a framework to increase motivation and self-efficacy when pursuing goal-oriented behavior and improve their adherence to rehabilitation and self-care during recovery. The clinician engages the dyad with SMART goals by normalizing the difficulties of setting goals and dispelling the myth of “will power” as the key to adhering to them. Together, the patient and caregiver set SMART goals for adherence with medical regimens and self-care practices.

One common theme that arises in this module is that the caregiver may be perceived by the patient as parental or authoritative when attempting to encourage goal setting and engagement in medical/rehabilitation regimens. In this case, leaning on the dyad’s foundation in mindfulness and the skills covered in the interpersonal effectiveness module may help the dyad move forward in a way that encourages recovery and improves communication.

Module 6: Fear of Recurrence

Session 6 addresses a common concern that many patients and caregivers with stroke face: the fear of recurrence. The dyad receives psychoeducation on the adaptive purposes of fear and worry, and how these emotions can be maladaptive when they become excessive. With the clinician, the dyad identifies fear signals, communicates worries to each other, and names personal triggers of fear or worry (e.g., anniversary dates, environmental factors, physical sensations/symptoms).

The Change/Acceptance dialectic is revisited as the foundation for building distress tolerance in the face of worry thoughts and for bolstering motivation to problem solve when solutions are available. Active coping strategies explored include: increasing your awareness by accepting fear or worry in the present moment, partnering with your medical team to reduce unnecessary worry, taking self-care steps in recovery to enhance self-efficacy, and practicing acceptance by sitting with worries without letting them take control. These skills are meant to help assuage recurrent concerns by giving the dyad opportunities to “cope ahead” and live more fully.

The clinician attentively observes which dyad member (patient or caregiver) is expressing more affect during the session. From here, the clinician can involve the other member by having them contribute their experience using the observe and describe skills of mindfulness, as well as helping coach the other member through the decision tree from previous sessions. Dyads can feed off one another’s fears and uncertainties, and the clinician can serve as a base for grounding them as they process unknowns.

Module 7: Making Meaning From Our Experiences

For many patients and caregivers, experiencing a life-threatening incident such as a stroke can elicit existential questions. Session 7 attempts to make the chaotic experience of the stroke more coherent by helping the dyad explore the incident and the meaning they can render from it. The clinician works with the dyad to explore thoughts surrounding the stroke experience. Together, the clinician and dyad unpack questions such as, “What do I wish people could understand better about my experiences during and after the stroke?” and “What is something I miss about my life before the stroke?” Other questions highlight growth that may have taken place after the stroke: “What is something in my life that I have gained since the stroke?” and “How have my perspectives/priorities changed?” The clinician facilitates the meaning-making process by coaching the dyad with mindfulness and dialectics (e.g., “It sounds like [patient] has seen both sides of the coin here—that it was an unfortunate event, and it has brought him/her closer to family). Clinicians pay careful attention during this session to polarized thinking (e.g., never, but) and provide rephrasing, empathic reflecting, nonjudgmental awareness and description, and balancing the acceptance/change dialectic. Overall, though, the clinician’s most important role in this session is to provide enough time and space for the dyad to process their experience of the stroke and begin the meaning-making process.

As this is often selected to be the last session in Recovering Together, typical termination session dynamics can arise. For example, dyads may desire for more time with the clinician and may bring up new issues as a way of reengaging the clinician in their care. As these instances occur, the clinician must remain mindful of the function of these behaviors, while reinforcing the dedicated work the dyad had presented throughout the intervention. This session ends with summarizing the time spend together, clinician’s hopes for the future, and well wishes on their continued path of recovery.

Descriptive Case Example

To illustrate how Recovering Together is applied in a clinical setting and highlight the nuanced ways in which patients and their caregivers can benefit from the intervention, we describe the experience of the pilot dyad enrolled in Recovering Together. This dyad was the sole pilot case of the program, and their experience illustrates the many unpredictable adverse outcomes of stroke, helps emphasize the importance of working with caregivers in addition to patients, and brings out the unexpected, unquantifiable psychological benefits that they derived from the intervention. Following this dyad’s participation, eligible patients and caregivers were enrolled into a feasibility-phase randomized clinical trial versus a minimally enhanced control group.

William was a 66-year-old man who suffered a right middle cerebral artery (MCA) stroke secondary to right carotid artery dissection and was admitted to the neuro ICU. He was referred by nursing staff because he had suffered a stroke, was cognitively and physically able to participate in our program, and had a family caregiver available: his wife of 38 years, Laura. During hospitalization, William met screening criteria for clinically significant depression and anxiety (HADS score for depression = 10, anxiety = 19; Table 2); he did not meet DSM diagnostic criteria for PTSD. Laura reported almost no emotional distress. The dyad’s pre-intervention distress and resiliency scores are presented in Table 2. Additionally, a measure of credibility (Devilly & Borkovec, 2000) assessed their perception of whether the program would be helpful (Table 2).

Table 2.

Psychosocial Variables at Baseline, Postintervention, and Follow-up in Patient-Caregiver Dyad

Distress Symptoms and Resiliency Factors (range of possible scores)	Baseline	Post Intervention	3 Month Follow Up	6 Month Follow Up
Patient
Satisfaction (range 4–32)	--	--	--	--
Depressive symptoms (range 0–21)	10	--	--	--
Anxiety symptoms (range 0–21)	19	--	--	--
PTS symptoms (range 17–85)	23	--	--	--
Mindfulness (range 12–48)	34	--	--	--
Coping (range 0–52)	52	--	--	--
Self-Efficacy (rage 10–40)	40	--	--	--
Intimate bond		--	--	--
Care	36
Control	20
(range 0–36)
Caregiver
Satisfaction (range 4–32)	--	11	--	--
Depressive symptoms (range 0–21)	3	13	3	4
Anxiety symptoms (range 0–21)	0	11	1	4
PTS symptoms (range 17–85)	22	26	22	21
Mindfulness (range 12–48)	37	38	46	43
Coping (range 0–52)	42	46	45	--
Self-Efficacy (range 0–100)	40	37	37	--
Intimate Bond
Care	30	32	32	--
Control	3	3	2
(range 0–36)

Note: Measures used include the following: satisfaction, Client Satisfaction Questionnaire; depressive symptoms, Hospital Anxiety and Depression Scale – Depression Subscale; anxiety symptoms – Hospital Anxiety and Depression Scale – Anxiety Subscale; PTS symptoms, PTSD Checklist – Specific Stressor; mindfulness, Cognitive and Affective Mindfulness Scale – Revised; coping, Measure of Current Status – A; patient self-efficacy, General Self-Efficacy Scale; caregiver self-efficacy, Caregiver Self-Efficacy Scale – Revised; intimate bond – Intimate Bond Scale, Care and Control subscales.

During the first two bedside sessions William displayed considerable emotional distress. A retired college professor, he described himself as a physically active person who always took care of others, and he expressed confusion and frustration about the reversal of roles brought on by his illness. He voiced a number of anxieties, including constant worry about why the stroke had happened and whether it would recur, and concern at the thought of causing his wife stress. Laura, on the other hand, noted that she tended to be “strong under pressure” and emphasized that she was not stressed. She did, however, report difficulty leaving William’s bedside to get quality sleep, social support, or physical activity, which she identified as pillars of her emotional health in the self-care discussions of Session 1. Laura was encouraged to take time to rest to be ready for caregiving responsibilities upon discharge.

The skills of dialectical thinking introduced in Session 2 were particularly helpful for addressing the concerns of both members of the dyad. For example, William was able to identify the dialectic of “I can feel frustrated with my situation, and feel thankful and grateful that I am alive at the same time.” Laura reconciled, “I can keep faithful watch over my loved one and take out time for myself to exercise.”

During these early sessions, William disclosed a history of untreated anxiety that he had been reluctant to discuss for years. He began to acknowledge the longstanding nature of his anxiety, admitted his need for better coping skills, and engaged in learning the program content. William’s family, who knew him as someone reluctant to engage with his emotions, expressed enthusiasm about his willingness to work with the program’s skills and verbalized their support. William himself conveyed his appreciations for finally having a platform on which he could articulate his worries.

William made good initial recovery and was transferred to a rehabilitation setting after 13 days in the hospital. The dyad was able to continue with Sessions 3 through 6 after discharge via video software on their laptop devices. With the help of their therapist, the dyad selected the following sessions to complete: “Adjusting to Life After the Stroke,” “Navigating Interpersonal Relationships,” “Fear of Recurrence,” and “Adherence to Rehabilitation Regimens and Self-Care.”

At the rehabilitation facility, William continued to be highly anxious and expressed repeated, intrusive worry about finding out the cause of his stroke and preventing recurrent strokes. Using the tools provided in Session 3, “Adjusting to Life After the Stroke,” William and his therapist identified that at the root of his anxiety was concern about being a burden on his family and losing independence. He did not want to be like his parents, who had required significant care as they aged; even though he had been happy to care for them, William did not want his wife or children to have that burden. Together, the patient and clinician worked on evaluating the accuracy of his worry that he would become like his parents as their health declined.

Meanwhile, Laura’s primary concern was ensuring that William continued to get the best care. Her behaviors at the time consisted of closely managing William’s care, keeping detailed notes, and constantly checking in with staff about his care. Though she struggled to tell William or even admit to herself that she was experiencing any anxiety, she was ultimately able to identify that her behaviors were motivated by stress and that they gave her a sense of purpose in the face of uncertainty.

The theme of the dyad’s adjustment to new patient and caregiver roles continued to emerge in their next session, “Navigating Interpersonal Relationships.” William, who had previously identified as a caretaker, struggled with accepting his new role of being cared for. His son was about to have a baby, William and Laura’s first grandchild, and he wanted to be able to help his son transition into fatherhood. The skill of naming multiple pieces of his identity was helpful in addressing this distress related to role changes. In fact, William was able to note that while roles had changed with regard to caretaking, he was still occupying the roles of “making people laugh” and bringing people together. The dyad was able to conceptualize the shifting nature of roles in interpersonal relationships by recalling a time when Laura was hospitalized with serious injuries after an accident and William cared for her for months: Laura found solace in thinking of these new post-stroke roles as a way that she could “give back” to William for all his previous care.

The “Fear of Recurrence” session helped the dyad cope successfully with some of their most pressing worries. Interestingly, during the exploration of worry in this module, both William and Laura felt that worrying was important, because if they did not worry they might slip up or miss something important, and William’s health would suffer. The Acceptance/Change dialectic and decision tree was helpful in distinguishing between problem solving/information gathering and worry. Laura expressed that it was useful for her to think about how she could do her best at problem solving, information gathering, and caretaking tasks, and then accept that the rest was out of her control. This was particularly relevant at the time of this session, as she was quite concerned about preparing their house for William’s return home and appeared to have constant worry that she wasn’t doing enough. Similarly, William was able to reframe his worry by recognizing that while whether or not he had another stroke was ultimately out of his control, he was still doing the best he could to care for his health in order to prevent recurrence.

The dyad’s final session, “Adherence to Rehabilitation Regimens and Self-Care,” took place once William had returned home from rehab. As a retired couple with high levels of self-efficacy, the dyad was able to engage easily with the concept of SMART goals but did not rely on them heavily to facilitate adherence to medical and self-care recommendations outside of the structure of the hospital.

The dyad did, however, continue to grapple with the anxieties caused by their new roles in this new post-stroke environment. Laura admitted that she felt more stress and anxiety since they arrived home, and described that feeling like looking out for William was “all in her hands” was overwhelming to her. Use of stress appraisal and distress tolerance skills helped her reframe some of these worries. Some of Laura’s fears were realized when William fell while attempting to walk without his walker. Though he was unharmed, this significantly increased Laura’s feelings of anxiety. To manage these worries, she attempted to a set rule for him to never walk without his walker, which he resented. With the help of their therapist, the dyad was able to work through this conflict using the observe-describe-participate model (i.e., articulating Laura’s feelings of anxiety and that they led her to set rules for William), labeling the dialectic (for instance, that William could be gaining independence in his recovery and still use his walker to get around), and practicing the goal-oriented communication skills to recognize the mutual worry and fear underlying both of their emotions and actions.

Patient and Caregiver’s Response to Recovering Together

Shortly after the couple’s final session, Laura informed the therapist that William had died unexpectedly of a myocardial infarction. William had a number of known vascular risk factors, including a personal and family history of hypertension and hypercholesterolemia. Still, his untimely death was shocking for his family and his medical team. In an exit interview, Laura noted that throughout her grieving process she relied heavily on her deep breathing, mindfulness, and yoga practice to cope with William’s death. On her post-intervention questionnaire, her HADS depression and anxiety scores were elevated from baseline (Table 2). However, by 3 month follow-up, Laura’s HADS depression and anxiety scores had decreased to baseline and remained low at 6 months (Table 2).

Feasibility and Acceptability

Dyad’s session attendance, endorsement of high credibility, and verbalization gratitude for the sessions, as well as caregiver’s satisfaction with program score (Table 1) suggest that Recovering Together is both feasible and acceptable. The dyad completed all 6 sessions of the program and were able and willing to practice skills in between meetings with their therapist.

Qualitatively, in a post-intervention interview led by her therapist, Laura expressed a high level of satisfaction with Recovering Together. She shared that of all care the dyad received, Recovering Together was “the most personally meaningful” to both her and William. She was grateful that the program provided an opportunity for William to speak openly about his anxiety for the first time and process his emotions with her. She felt that he benefitted directly from the program’s conversations about relaxation, the difficulty of role changes, and finding new ways of coping. Though William was sometimes too overwhelmed to practice his new skills daily, he looked forward to their weekly sessions and valued the continuity they provided through his transitions in care. Laura felt the program introduced topics that had important implications for caregivers as well: it allowed her to open up frank discussions with William about his guilt about dependency that she would not have been able to broach on her own.

Discussion

The Recovering Together resiliency program was found to be credible, feasible, and beneficial by our pilot patient, caregiver, and their family. This pilot dyad was able to participate fully and endorsed high satisfaction. Even with the patient’s unexpected death, William and Laura’s story serves as an example of the positive response to a dyadic resiliency program that engages patients and caregivers from hospitalization through discharge.

Emphasizing a skills-based approach to resiliency in stroke patients and their caregivers seemed appropriate. Stroke survivors can face a wide range of impairments from their injury, from speech difficulties to loss of motor function to subtler cognitive challenges, and the trajectory of physical recovery is often slow and uncertain. Proactive coping with a focus on tolerating uncertainty, focusing on the present moment, and healthy interpersonal communication allows dyads to improve their sense of well-being, even when faced with potentially permanent physical and cognitive sequelae.

While Recovering Together bears some similarities to other psychosocial interventions shown to be unsuccessful in clinical trials, a number of differences set Recovering Together apart. For one, some of these proposed interventions drew heavily from CBT (Glass et al., 2000; Wade et al., 2019) or involved a textbook-delivery CBT course (Berkman et al., 2003). For critically ill patients suffering systemic illness and associated cognitive dysfunction, and especially patients with acute neurological injuries, these cognition-forward approaches can be overly challenging, diminishing their efficacy. Recovering Together does draw conceptually from CBT, but relies less on the cognitive exercises and flexibly emphasizes the connectedness of thoughts, feelings, and sensations without over-intellectualizing them. Second, in contrast to support-only interventions targeted at helping family caregivers of critically ill patients with decision making and emotional coping while in the hospital (White et al., 2018), Recovering Together provides specific skill training so that patients and their caregivers can learn to support themselves and each other throughout the recovery process. Third, the delivery of Recovering Together via 6 short bedside and telehealth interventions distinguishes it. Its continuity from the hospital setting to the post-hospital setting via telehealth helps participants navigate the often challenging care transition, and circumvents the weaknesses of previously proposed interventions that only supported participants in the hospital (Wade et al., 2019; White et al., 2018) or that had to negotiate follow-up challenges to ensure completion (Berkman et al., 2004; Glass et al., 2000). The short duration of Recovering Together sessions would also make them more accessible to patients and caregivers once they leave the hospital setting, compared to sessions in prior interventions lasting up to 90 minutes (Glass et al., 2000). Fourth, to avoid concerns raised in previous studies about low overall levels of psychological distress creating a floor effect (White et al., 2018), Recovering Together screens participants so that only those at risk are included in our ongoing randomized clinical trial. Finally, in accordance with the AHA’s proposal, Recovering Together focuses specifically on the patient-caregiver dyad. While other interventions have addressed social support systems more broadly (Berkman et al., 2004; Glass et al., 2000), focusing on the unique needs of the patient-caregiver dyad allows for more targeted delivery of coping skills. Last, Recovering Together was developed following a carefully designed sequential approach that included direct feedback from patients, caregivers, and medical team, with a particular focus on using simple language, easy-to-grasp metaphors, and visuals to explain difficult concepts.

The dominant themes that emerged from William and Laura’s experience were worry about managing care and stroke recurrence, grappling to control uncontrollable situations, coming to terms with changing roles, and navigating interpersonal communication. The content covered in Recovering Together focuses on each of these areas of need and provided satisfactory skills with which the dyad could address these challenges.

Furthermore, after William’s death Laura reported using her new mindfulness skills to cope with her significant loss. This highlights that once internalized, the skills taught in Recovering Together may generalize to impact participants’ lives beyond the context of the stroke experience. Notably, bereaved families of ICU patients have been shown to suffer from persistent complex bereavement disorder (commonly known as complicated grief) at rates as high as 46% in general ICU populations, and up to 21% in neuro-ICU-specific studies (Anderson, Arnold, Angus, & Bryce, 2008; Trevick & Lord, 2017). Laura’s HADS responses show an expected increase to clinically significant levels at the post-intervention assessment shortly after William’s death, but subsequently showed recovery at 3- and 6-month follow-up. Though the HADS is not designed to assess grief specifically, low levels of emotional distress suggest a return to function after William’s death consistent with a nonpathological grief trajectory.

Although distress is expected at the onset of a medical trauma, only William endorsed clinically significant symptoms at hospitalization. Laura’s HADS anxiety subscale was zero. This coping profile, with one partner displaying distress while the other shows less emotion, has been documented in cancer patients (Hodges, Humphris, & Macfarlane, 2005). Longitudinal research shows that patient and caregiver may experience more severe stressors at different times due to their different roles and the different challenges associated with hospital and home settings (Hodges et al., 2005). Our exit interview with Laura suggests that this was the case for our dyad: while William reported high distress in the hospital, Laura felt little emotional distress, instead focusing on active coping and problem solving. When William returned home his anxiety improved but Laura, faced with caring for her husband and his new disabilities, began feeling “overwhelmed,” “alone,” and “emotionally fragile.” This speaks to the fluid and nuanced patterning of distress symptoms within dyads, and is consistent with prospective dyadic research in cancer populations, which found that distress can “travel” from one member of the dyad to the other (Hodges et al.). This pattern reinforces the power of a longitudinal prevention program such as Recovering Together.

In addition to changing roles, other factors likely contributed to Laura’s increase in distress scores post-intervention. For one, some symptoms of depression and anxiety are expected and appropriate given the proximity to William’s death. Further, trials have demonstrated that palliative care-type psychosocial interventions resulted in less worsening of symptoms compared to control dyads (El-Jawahri et al., 2016), so intervention in the immediate post-stroke period may be most effective in preventing greater worsening of symptoms rather than leading to marked improvement. Regardless of cause, Laura’s improvement at later time points suggests that follow-up beyond program completion is appropriate to capture longitudinal variations in distress. Long term, Recovering Together was an appreciated and clinically important component of this dyad’s care by both subjective and objective reports.

Recovering Together has several important strengths. First, its design draws on a variety of cognitive-behavioral therapy approaches, which provides unique flexibility to meet neuro ICU patient and caregiver needs while still working within the constraints of their context. Second, though we focus specifically on patients sustaining strokes and their caregivers in this trial, Recovering Together is a highly generalizable intervention with skills applicable to all patients hospitalized in a neuro ICU, or undergoing other acute health crises such as a heart attack or an emergency surgery. Currently, an adaptation of Recovering Together is being implemented in a National Institute of Nursing Research–funded trial that is targeted at all neuro ICU patients regardless of diagnosis. Patients in other ICUs or the emergency room could benefit from this intervention, as well. Finally, Recovering Together uniquely provides dyads with continuity of care from hospital to home. Having a familiar clinician follow the dyad through several stages of recovery eases the transitions in care and, importantly, helps the dyad adapt and strengthen their skills through a variety of new environments. William and Laura highlighted this as one of their the most valued elements of Recovering Together.

Holistically, an unmeasured strength of Recovering Together may be its ability to provide a platform for meaning making in a chaotic time. Through the skills they developed in the program, William and Laura were able to use critical illness as a catalyst for healing more broadly. In parallel with his physical recovery, William harnessed his heightened stress to delve into his preexisting anxiety and begin a process of emotional recovery. Together, the couple was able to use the tools provided by the program to push through emotional distress to the point where they were able to tackle obstacles in their relationship that they otherwise would not, or could not, address. Crucially, what we learn from William and Laura’s story is that “benefit” can take on varied forms and have a dynamic course. Laura’s high posttest satisfaction may seem paradoxical given her increased distress on quantitative measures. For her, “satisfaction” may look like William’s newfound willingness to seek treatment for his anxiety or the meaning and closeness she may have been able to gain from their time together within the program, rather than improvement on a symptom inventory. The significance of Recovering Together may transcend answers on self-report questionnaire and lay in its ability to foster the reflection that makes deriving meaning from an otherwise frightening medical experience possible.

Implementing an in-hospital intervention program requires working within the limitations set by the hospital environment. Recovering Together was designed with the culture and workflow of the Neuro-ICU in mind. For instance, due to patients’ medical acuity and the fast pace of the intervention delivery, traditional modes of assessment and treatment conceptualization are not possible. Typical cognition-heavy CBT methods are challenging for patients with severe neurologic injuries. So, instead of relying on such standards, Recovering Together has drawn on the flexibility of its mixed-methods approach to find a place in its unique setting. During development, input from neuro ICU nursing staff was crucial, and cooperation from dyads’ bedside nurses was paramount in its implementation (McCurley et al., 2018). Despite nurse participation, challenges arose in protecting time for dyads to meet with their therapist in the setting of a busy medical care schedule. Future iterations of Recovering Together will require more integration of the program into the standard neuro ICU care teams (physical therapy, occupational therapy, speech therapy, etc.).

Inherent in a skills-based dyadic intervention is active participation by both patient and caregiver. Therefore, the reach of Recovering Together is limited to patients who are physically and cognitively capable of engaging with the program content and caregivers who have the availability and interest to participate with their loved one. However, based on neuro ICU census data from our institution, approximately 70% of patients who pass through the neuro ICU would be medically cleared for participation, and 95% of patients have a family caregiver with them during their ICU stay. Future work may lead to intervention programs open to patients at all stages of recovery, so that those who regain speech or cognitive function after the acute hospital setting would be able to benefit from resiliency skills training.

In conclusion, William and Laura’s story demonstrates the complex and dynamic emotional response to an acute stroke. Resiliency skills interventions such as the Recovering Together program can be valuable tools for helping dyads cope with the crisis at hand, with the additional benefit of improving their emotional well-being more broadly.

Highlights.

• Resiliency training for stroke patients and caregivers is credible and feasible

• Recovering Together pilot dyad endorsed high satisfaction and improved well-being

• Dyadic approach provides a valued space for meaning making together after stroke