Preventing Chronic Emotional Distress in Stroke Survivors and Their Informal Caregivers

Abstract

Background/Objective: Chronic emotional distress (e.g., depression, anxiety, post-traumatic stress) is common after stroke and interdependent between patients and their informal caregivers. We measured stroke survivors', caregivers', and neurocritical care nurses' views of primary drivers of distress during the stroke experience, and needs and preferences for the structure, topics, mode of delivery, and timing of an intervention to promote emotional recovery. Methods: We conducted semi-structured interviews with 24 patient-caregiver dyads within the Neuroscience Intensive Care Unit (Neuro-ICU). Additionally, we conducted two focus groups with 15 nurses. Interviews and focus groups were audio-recorded, transcribed, and coded using NVivo 11 (QSR International) software. Results and Conclusions: The challenges and impacts of stroke most commonly reported by dyads were: uncertainty about future health, fear of recurrent strokes, negative emotions, and role changes post-stroke. Dyads and nurses agreed that resiliency skills such as mindfulness/focusing on the present, problem solving, gratitude/optimism, self-care, interpersonal communication and developing a supportive team of family, friends, and medical staff are beneficial to optimize recovery. The potential barrier to intervention delivery was accessibility, due to challenges of time and travel to appointments. Participants agreed that starting the intervention at hospitalization and

Recovering together: building resiliency in dyads of stroke patients and their caregivers at risk for chronic emotional distress; a feasibility study

“…With funding from the National Institute of Nursing Research, we are now conducting a proof of concept RCT that enrolls at risk dyads with any acute brain injury, as our prior studies did not find any differences in emotional distress by type of diagnoses [7][8][9][10]15]. This RCT also employs an attention placebo control matched in time and dose with RT, in order to strengthen the internal validity of findings.…”

“…Recovering Together (RT) is a six-session, seven-module (two universal and five specific), skills-based dyadic intervention targeting the prevention of chronic emotional distress in patients and their informal caregivers. RT is informed by elements of traditional cognitive behavioral therapy (CBT; e.g., cognitive restructuring/reappraisals, adaptive thinking), dialectical behavior therapy (DBT; e.g., mindfulness, dialectics, distress tolerance), and principles from trauma-informed care (e.g., impact of the illness/injury, understanding triggers, role and identity changes, meaning making), to address unique needs experienced by each dyads [15]. The intervention directly targets self-efficacy, mindfulness, coping skills, and intimate bonds within dyads, consistent with our prior quantitative and qualitative research [7,9,10,13,15,16].…”

“…The patient and caregiver collaborate with the clinician to identify four out of the five available modules that best align with the dyad's presentation and needs. These sessions build upon and rehearse skills learned in the first two sessions, and teach additional skills and topics selected by dyads [15]. All sessions are approximately 20-30 min and modules can be delivered in any order deemed appropriate/relevant.…”

“…Although advances in endovascular and neurocritical care approaches to stroke treatment and recovery have substantially increase the number of survivors, there remains a need to develop treatments to address the emotional sequelae associated with the stroke and subsequent hospitalization for both patients and their informal caregivers. Rates of clinically significant symptoms of depression and anxiety (30-72% patients; 55-68% caregivers), as well as post-traumatic stress (PTS; 29.6% patients; 20% caregivers) are high [7][8][9][10][11][12][13][14][15][16] at hospitalization for an acute brain injury (including a stroke) and predictive of chronic emotional distress at 3and 6-months later for both patient and caregiver [8][9][10]. However, there are no evidence-based psychosocial interventions focused on prevention of chronic emotional distress in this population.…”

“…First, we conducted cross-sectional and prospective studies with patients and their primary caregivers at hospitalization in a Neuroscience Intensive Care Unit (Neuro-ICU) and identified key modifiable intervention targets associated with emotional distress (e.g., mindfulness, coping, interpersonal bond, and self-efficacy) [7][8][9][10]16]. Next, we conducted 24 qualitative interviews with stroke dyads followed by three focus groups with nurses [15] to determine dyads' challenges associated with the stroke and subsequent hospitalization, perceptions of the proposed intervention targets, ways to best teach the proposed resiliency skills, interest in the intervention, and best modality for intervention delivery. We subsequently treated one stroke dyad with Recovering Together [30] and made refinements from lessons learned.…”