Stroke Caregivers Research Articles

Factors influencing sedentary behaviours after stroke: findings from qualitative observations and interviews with stroke survivors and their caregivers

BackgroundStroke survivors are more sedentary than healthy, age-matched controls, independent of functional capacity. Interventions are needed to encourage a reduction in overall sedentary time, and regular breaks in prolonged periods of sedentary behaviour. This study captured the views and experiences of stroke survivors and their caregivers related to sedentary behaviour after stroke, to inform the development of an intervention to reduce sedentary behaviour.MethodsMixed-methods qualitative study. Non-participant observations were completed in two stroke services, inclusive of inpatient and community settings in the United Kingdom. Semi-structured interviews were conducted with stroke survivors and their caregivers (if available) at six- or nine-months post-stroke. Underpinned by the capability, opportunity and motivation (COM-B) model of behaviour change, observational data (132 h) were analysed thematically and interview data (n = 31 stroke survivors, n = 12 caregivers) were analysed using the Framework approach.ResultsObservation participants differed in functional ability whereas stroke survivor interviewees were all ambulant. Six themes related to sedentary behaviour after stroke were generated: (1) sedentary behaviour levels and patterns after stroke; (2) the physical and social environment in the stroke service and in the home; (3) standing and movement capability after stroke; (4) emotion and motivation after stroke; (5) caregivers’ influence on, and role in influencing stroke survivors’ sedentary behaviour; and (6) intervening to reduce sedentary behaviour after stroke. Capability, opportunity and motivation were influenced by the impact of the stroke and caregivers’ inclination to support sedentary behaviour reduction. Stroke survivors reported being more sedentary than they were pre-stroke due to impaired balance and co-ordination, increased fatigue, and reduced confidence in mobilising. Caregivers inclination to support stroke survivors to reduce sedentary behaviour depended on factors including their willingness to withdraw from the caregiver role, and their perception of whether the stroke survivor would act on their encouragement.ConclusionsMany stroke survivors indicate being open to reducing sedentary behaviour, with appropriate support from stroke service staff and caregivers. The findings from this study have contributed to an intervention development process using the Behaviour Change Wheel (BCW) approach to develop strategies to reduce sedentary behaviour after stroke.

Two-level multi-methodological evaluation of a new complex primary support programme for stroke care-givers in Germany

AbstractFamily care-givers are the backbone of the long-term support system for care receivers at home. Care for stroke survivors after rehabilitation primarily rests on the shoulders of family members, often of older age themselves. We report the outcomes of a new complex support programme, the Care-givers’ Guide, on both individual and system levels. Psycho-social support and personalised information were the main ingredients of this intervention. A two-level multi-methodological approach was needed, with two concurrent interconnected studies. Family care-givers reflected on outcomes at an individual level in a quant-QUAL study with a pre–post quantitative questionnaire and a post-intervention qualitative semi-structured interview. Practitioners participated in a QUAL-QUAL study ex post interview, reflecting on the outcomes on the care-givers and on their own stroke care system. Individual family care-givers showed an increase in health literacy and level of psycho-social health. Qualitative analysis revealed improvement in knowledge, capability to act and individual empowerment; and stabilisation of sense of certainty, life balance and emotional wellbeing. Practitioners observed an optimisation of the stroke support system by improving professionals’ daily routine, augmenting the institutional support offer, securing the quality of patient care and increasing inter-institutional co-operation attempts. Positive outcomes of the support programme were observed on both evaluation levels: family care-givers showed improved health literacy and psycho-social health, whereas the professionals noticed an optimisation of the support system.

Effects of A Benefit-Finding Intervention in Stroke Caregivers in Communities

ABSTRACT Objectives: To verify the effectiveness and feasibility of a nine-week benefit-finding intervention on the burden, quality of life, and benefit finding of caregivers, as well as on the quality of life of stroke survivors. Methods: Benefit finding refers to the individual, social, psychological and spiritual benefits perceived by an individual experiencing stress or post-traumatic events. A randomized controlled trial was performed in which 68 stroke survivors and their caregivers were recruited from the Zhengzhou community, China, and randomly split into two groups. The intervention group included those having undergone a nine-week benefit-finding intervention, while the control group included those individuals having undergone a nine-week routine health education. At baseline and one-week post-intervention (after a 9-week intervention), the quality of life of stroke survivors and caregivers and the burden and benefit finding of caregivers were determined. Results: In comparison to the control group, caregiver benefit finding, quality of life, burden, and stroke survivor quality of life were significantly improved (P <.005). Conclusions: The intervention appears to be feasible for stroke patients and caregivers. The intervention is capable of improving the quality of life of caregivers and survivors, increasing the benefit finding of caregivers and reducing the burden of caregivers. Clinical Implications: The benefit-finding intervention is capable of improving the health condition of stroke patients and caregivers.

The Unmet Needs of Stroke Survivors and Stroke Caregivers: A Systematic Narrative Review

IntroductionFacilitating stroke survivors and their caregivers to lead a fulfilling life after stroke requires service providers to think about their different needs. Poor post stroke care may lead to unmet needs in stroke survivors and stroke caregivers. This may compromise them in leading their lives optimally after stroke. Objectives & MethodologyThis systematic narrative review examines articles published from 1990 to 2017, generated from Ovid, MEDLINE, CINAHL, and PubMed. The search was also supplemented by an examination of reference lists for related articles via Scopus. We included 105 articles. FindingsWe found that the type of unmet needs in stroke survivors and the contributing factors were substantially different from their caregivers. The unmet needs in stroke survivors ranged from health-related needs to re-integration into the community; while the unmet needs in stroke caregivers ranged from information needs to support in caring for the stroke survivors and caring for themselves. Additionally, the unmet needs in both groups were associated with different factors. ConclusionMore research is required to understand the unmet needs of stroke survivors and stroke caregivers to improve the overall post-stroke care services.

Using the Preparedness Assessment for the Transition Home After Stroke Instrument to Identify Stroke Caregiver Concerns Predischarge: Uncertainty, Anticipation, and Cues to Action.

The aim of the study was to better understand caregivers' concerns about long-term implications of stroke and the caregiving role after completing the Preparedness Assessment for the Transition Home After Stroke (PATH-s). In this qualitative study, cognitive interviews were conducted with 20 stroke caregivers who completed the PATH-s tool as part of an instrument validation study. Data were analyzed for salient themes related to their perceptions about stroke and the caregiving role. Interviews yielded robust narrative data describing how the PATH-s items aided caregivers in recognizing potential issues and concerns about stroke and the caregiving role. Caregivers experienced uncertainty about the long-term stroke prognosis, which provoked anticipation and cues to action to begin addressing their concerns. Completing the PATH-s helped caregivers identify concerns regarding the long-term implications of stroke and their caregiving role. It may serve as an important assessment tool to assist rehabilitation nurses to better understand and address caregiver needs predischarge.

COPING STRATEGIES BY STROKE CAREGIVERS: EVIDENCE FROM A QUALITATIVE STUDY IN SARAWAK, MALAYSIA

Caring for stroke survivors is inevitably a burden to caregivers. It is not uncommon for stroke survivors who are discharged from the hospital and found themselves at home without any help and care from the supposed caregivers. However, in instances where there are available and willing caregivers, a sudden and unpredictable task of caring for stroke survivors require the stroke caregivers to apply their coping strategies due to the demanding nature of looking after a survivor. This study aimed to determine coping strategies undertaken by stroke caregivers in caring for stroke survivors. This was an exploratory qualitative study and data was collected from the caregivers of stroke survivor using a semi-structured guided questionnaire. A total of 18 caregivers were included in the study. The data were collected from November 2015 until June 2016 at a selected community rehabilitation centre in Kuching, Sarawak. The qualitative data analysis revealed that the coping strategies undertaken by stroke caregivers include change of role in life, self-motivation, sharing with other people, crying, trying to forget things that happen, hoping survivors will get better, emotion suppression and self-blame. The study highlighted the experiences by the caregivers for caring for stroke patients and focused on the coping strategies undertaken by the caregivers. Better ununderstanding of these experiences does help the service providers to provide better support and resources for caregivers in caring for stroke survivors.

Design and Usability Testing of the Stroke Caregiver Support System: A Mobile-Friendly Website to Reduce Stroke Caregiver Burden.

Design and Usability Testing of the Stroke Caregiver Support System: A Mobile-Friendly Website to Reduce Stroke Caregiver Burden.

Community-Based Interventions for Stroke Provided by Nurses and Community Health Workers: A Review of the Literature.

Community-based interventions are vital for facilitating poststroke recovery, increasing community participation, and raising awareness about stroke survivors. To optimize recovery and community reintegration, there is a need to understand research findings on community-based interventions that focus on stroke survivors and their caregivers. Although nurses and community health workers (CHWs) are commonly involved in community-based interventions, less is known about their roles relative to other poststroke rehabilitation professionals (physical therapists, occupational therapists, and speech-language pathologists). Thus, the purpose of this review is to explore research focused on improving community-based stroke recovery for adult stroke survivors, caregivers, or both when delivered by nurses or CHWs. A systematic review using Scopus, PubMed, EBSCOhost, MEDLINE, CINAHL Complete, and PsycInfo was completed to identify community-based poststroke intervention studies using nurses or CHWs through August 2018. Eighteen studies meeting inclusion criteria from 9 countries were identified. Details regarding nurses' and CHWs' roles were limited or not discussed. Interventions emphasized stroke survivor self-care and caregiver support and were offered face-to-face and in group sessions in the community and home. A wide range of instruments were used to measure outcomes. The results of the interventions provided were mixed. Improvements were observed in perceptions of health, quality of life, knowledge, self-efficacy, self-management, and caregiver support. Nurses and CHWs play a pivotal role in community-based care. Evidence suggests community-based interventions facilitate the necessary support for stroke survivors, caregivers, families, and communities to optimize stroke recovery. Data from this review illustrate a continued need for comprehensive programs designed to address the complex needs of stroke survivors and families when they return to their homes and communities.

Caregiving Self-efficacy and Knowledge Regarding Patient Positioning Among Malaysian Caregivers of Stroke Patients.

BackgroundMost family caregivers of stroke patients in Malaysia do not receive adequate prior preparation or training. This study aimed to determine levels of patient positioning knowledge and caregiving self-efficacy among caregivers of stroke patients.MethodsThis cross-sectional study was conducted at an urban teaching hospital involving 128 caregivers of stroke patients. The caregivers were conveniently sampled and completed the data collection forms, which comprised their socio-demographic data, patients’ functional status, the Caregiving Knowledge For Stroke Questionnaire: Patient Positioning (CKQ-My© Patient Positioning) to measure caregiver’s knowledge on patient positioning, and the Family Caregiver Activation Tool (FCAT©) to measure caregivers’ self-efficacy in managing the patient. Descriptive and multivariate inferential statistics were used for data analysis.ResultsAmong the caregivers sampled, 87.3% had poor knowledge of positioning (mean score 14.9 ± 4.32). The mean score for FCAT was 49.7 ± 6.0 from a scale of 10 to 60. There was no significant association between knowledge on positioning and self-efficacy. Multiple linear regression showed that caregivers’ age (B = 0.146, p = 0.003) and caregiver training (B = 3.302, p = 0.007) were independently associated with caregivers’ self-efficacy.ConclusionCaregivers’ knowledge on the positioning of stroke patients was poor, despite a fairly good level of self-efficacy. Older caregivers and receiving caregiver training were independently associated with better caregiver self-efficacy. This supports the provision of caregiver training to improve caregiver self-efficacy.

Psychometric characteristics of the WHOQOL-SRPB Scale in a population of stroke survivors and caregivers.

Studies have shown that spirituality plays an important role in enhancing the quality of life of stroke survivors and their caregivers. Spirituality has been associated with positive patient and caregiver outcomes, so a valid, reliable measure of spirituality is important. It has not been tested with stroke survivors and their caregivers, so the aim of this study was to evaluate the validity and reliability of the World Health Organization Quality of Life Spiritual Religious and Personal Belief (WHOQOL-SRPB) scale for stroke survivors and their caregivers. In this cross-sectional study, 414 stroke survivors at 10 rehabilitation hospitals and 244 caregivers completed the WHOQOL-SRPB. The WHOQOL-SRPB's factorial structure was assessed with confirmatory factor analysis (CFA), criterion-related validity was evaluated with the WHOQOL-BREF, and internal consistency reliability was assessed with Cronbach's α and ordinal α. The CFA results supported the hypothesized eight-factor structure. The stroke survivor and the caregiver versions of the model both had excellent fit indices. The factor loadings for the final models were strong: 0.78-0.98 for stroke survivors and caregivers (p < 0.001). The criterion-related validity for the WHOQOL-SRPB showed weak to moderate correlations with all the WHOQOL-BREF dimensions. Both ordinal α and Cronbach's α had values more than 0.70. The WHOQOL-SRPB scale is a valid, reliable instrument for measuring spirituality in stroke survivors and caregivers. Given the importance of spirituality for stroke survivors and caregivers, the WHOQOL-SRPB scale is recommended as an important tool for clinical practice and research.

Abstract TP403: Caring for the Caregiver After Stroke

Background: After diagnosis of a chronic progressive condition or emergent neurologic event, the focus is on the survivor and his/her adaptation to a ‘new normal’. Often these survivors or neurologic disease/injury require physical or emotional support and supervision from a caregiver. Research tells us that the act of caregiving is stressful, and often leads to physical and mental health problems for the caregiver1. Caregivers are often forced to adjust to a ‘new normal’ themselves, and verbalize feelings of loss associated with the relationship with the person they are caring for and indicate an inability to engage in tasks that they enjoy2. Studies also indicate that support often helps caregivers identify the positive attributes to caregiving, and that community recognition/support leads to positive coping behaviors3. Purpose: The purpose is to inform the audience of the novel Stroke Caregiver Support Group with respite care provided in Grand Rapids, MI. Methods: An analysis of feedback from stroke caregivers attending this support group was conducted. Within this analysis, meaningful support group topics and respite care services were described, with analysis of how these topics benefitted the caregiver and the adjustment to life caring for a stroke survivor. Results: Stroke caregivers appreciate a caregiver only support group as a venue to share difficult feelings with peers and promote self-reflection. All participants indicated a strong desire to continue to attend this support group and appreciate focus topics on finances and emotional adjustment after stroke. Conclusions: There are few caregiver-only support groups available for those caring for a loved one after a stroke. Although many diagnosis specific survivor support groups (stroke, TBI, Alzheimer’s, etc.) exist, few target the caregiver and offer a time for respite and support with a professional moderator. A care-giver only stroke support group has shown positive anecdotal value. Long-term study on any health-related benefits and qualitative impact is recommended.

Abstract WP469: The Art of Health: A Pilot Program for Stroke Survivors

Background and Purpose: Along with physical and cognitive effects, psychosocial well-being may be affected post-stroke, including depression, anxiety, and feelings of isolation. Incorporating holistic activities into stroke survivors’ recovery may be beneficial. An innovative pilot program was developed by a community hospital and a local university art therapy department to provide art classes to stroke survivors. The aim of this pilot program, The Art of Health , was to determine if stroke survivors and caregivers would participate in an art program for addressing overall well-being. Methods: Five art classes of 1.5 hours in length were scheduled for the program and advertised to hospital leaders and the rehab unit. Art therapy students volunteered to teach the art classes. Patients and caregivers were invited from the stroke support group and from the inpatient rehab unit to attend. The Stroke Coordinator prepared a small health topic to introduce to the art class attendees prior to the art activity. Art therapy students attempted to match their art class activity to the health topic, but were given freedom of choice for overall art project. Classes were held in the evening to accommodate caregivers’ potential schedules. Attendees were surveyed regarding the art classes to gain feedback on improving the program. Results: A total of 47 participants attended the five art classes (class median = 9). Of those surveyed, 100% (n = 47) stated that they would attend another type of art program at the hospital. Two students inquired if there was opportunity to complete their university clinical internship at the hospital. Due to The Art of Health pilot program success, the stroke coordinator collaborated with the art therapy department instructor to create a clinical rotation. With the support of the hospital CEO and CNO, an interprofessional team was formed to develop and support an Art Therapy Internship program at the hospital. Conclusions: In conclusion, innovative programs which include creative-arts based therapies and activities may be beneficial to both stroke survivors and caregivers. Future research on creative-arts and their impact on psychosocial well-being post-stroke would be of benefit.

Abstract WP184: The Road to Recovery Stroke Support Group: A Feasibility Assessment of an Inpatient Multi-Disciplinary Stroke Support Group

Background: Stroke is life changing for both patients and caregivers. Recovery from stroke affects the physical, social and emotional aspects of life. Transitioning to a new normal should begin immediately after stroke, ideally during hospital admission. Most support groups exist outside of the hospital setting and begin weeks to months after the ictus. The Road to Recovery Stroke Support Group (RRSSG) was created to bridge the gap between the inpatient and outpatient setting. Purpose: RRSSG aims to provide a weekly platform for stroke survivors and caregivers in an in-hospital setting. During sessions, attendees learn about types of challenges after stroke, rehabilitation services available to them and what to expect after leaving the hospital. Patients can return to the same support group once discharged from the hospital. Methods: RRSSG was launched in November 2018. Candidates for the weekly RRSSG meeting were identified by nurses and the stroke case manager. Meetings were facilitated by a stroke survivor volunteer, case management and physical and social medicine. Invitations were extended to patients and their caregivers prior to discharge. Data were collected for 7 months and analyzed for the following: patient demographics, types of stroke and discharge disposition. Results: During the 7-month period, 514 patients were discharged with a stroke diagnosis, 24.3% of which attended the RRSSG. The demographics were 53.7% women with a median age of 66 years; 33.1% White/European, 36% Hispanic/Latino, 18.0% African American, 10.8% Asian, and 2.1% other. 61.6% had an ischemic stroke, 30.4% had an intracerebral hemorrhage, 11.2% had a subarachnoid hemorrhage. More patients who attended RRSSG were discharged to an acute rehabilitation hospital (6.5% RRSG vs. 1.8% non-RRSG, p=0.04). There was no difference in those discharged to: home (54.0% RRSSG vs. 55.5% non-RRSSG) and skilled nursing facility (27.3% RRSSG vs. 20.1% non-RRSSG). Conclusion: Creating and sustaining an inpatient multi-disciplinary stroke support group on a weekly basis is feasible. The future goals are to assess the impact of the in-hospital support group on stroke knowledge retention, medication compliance, post-stroke depression, recurrent stroke and re-admission rates.

Abstract WP451: “Development, Feasibility and Validation of “Stroke Home Care” Application in a Resource Limited Setting: A Proof of Concept Study”

Introduction: Stroke rehabilitation and caregivers training is central to improve post stroke care and reduce caregivers’ burden. Mobile applications(app) may provide a patient and caregiver centric modality to improve stroke care Aim: To develop and evaluate feasibility of a medical application for delivering post stroke care. Methods: A mobile app was developed on an android operating system following a preliminary assessment of post stroke complications to train caregivers. App consists of videos of home based care strategies for bedsore prevention, feeding, mouth care, ROM exercises, catheter care, psychological support to patients etc. App includes awareness videos on stroke, problems faced after stroke, follow up schedule, feedback option. App feasibility was assessed among 25 bedridden stroke survivors and their caregivers selected purposely. App validation was done by 16 stroke experts including neurologists, nurses, psychologists, physiotherapists using semi-structured-questionnaire for data collection. Following this, final "Stroke Home Care" app was developed. Results Feasibility: Mean age of patients and caregivers was 52.6±14.8 and 32.4±8.9years, respectively. 64% patients females, 75% caregivers males. 56% lived in rural. Median NIHSS 14 (IQR: 12-17). Complications were 56% Ryle’s tube, 72% Foley’s catheter, 12% bedsore. 64% caregivers were graduates. 52% sons. All caregivers responded that app contents, videos and language was understandable and appropriate. 92% preferred ‘Hindi’ language. All agreed to App enhancing their stroke knowledge. All were satisfied. Validation: Mean age of experts was 33.2±4years. 75% females. 56% nursing experts and postgraduates,19% MDs. 50% Nursing teachers, 19% Neurology fellows. None faced any app installation problem. 81.3% experts highly satisfied with app functions, its contents, voice clarity, video clarity and duration, contents’ sequence, understandability. Discussion/Conclusion: “Stroke Home Care” App is feasible, pragmatic and user-friendly for use by caregivers of stroke survivors in a resource limited setting/developing country. It should be tested by an RCT to evaluate its efficacy in reducing post stroke complications and reducing caregivers’ burden.

Abstract NS3: A Comprehensive Post-Acute Stroke Services (COMPASS) Website for Public Use

Background: Stroke patients, caregivers, and health and human services are in need of organized, evidence-based resources to improve post-acute care and outcomes. Educational materials vetted by stakeholders are scarce and difficult to develop. The COMprehensive Post-Acute Stroke Services (COMPASS) Study developed online resources by discipline for clinical providers, patients, caregivers, and health and human services teams. Purpose: This presentation introduces the COMPASS website content available and ready for immediate use to support post-acute stroke care quality improvement. Methods: Materials were developed as a component of the PCORI-funded COMPASS Study designed to implement and evaluate comprehensive transitional care (TC) for stroke survivors. Patients discharged home from 41 NC hospitals after a stroke or TIA received COMPASS TC which incorporated Centers for Medicare and Medicaid (CMS) recommendations: a follow-up phone call within two days of discharge; a comprehensive follow-up clinic visit; and delivery of a patient care plan. An interdisciplinary team of health care providers, stakeholders, and researchers developed patient and caregiver educational materials tested for sixth grade literacy, a community resource directory, and training materials for implementation of COMPASS TC that are available on the COMPASS website at www.nccompass-study.org/. Results: Educational products, including a directory of resources, training manuals, recorded webinars, instructional handouts, animated videos, and patient/caregiver materials are on the COMPASS website. An electronic application called COMPASS-Care Plan (CP) also developed can be readily integrated into Epic and Cerner electronic health records. COMPASS-CP was developed to streamline the delivery of the TC model. Since the website was made public July 1, 2019, there have been 616 views from 15 countries with the majority reviewing patient/caregiver resources. Conclusions: The COMPASS website provides health and human services teams with organized, evidence-based resources to support delivery and management of post-acute transitional care for patients and caregivers.

Abstract WP463: Moderator Role of Preparedness on the Association Between Depression and Quality of Life in Stroke Survivor-Caregiver Dyads

Background: Although several studies have clearly shown that depressive symptoms in stroke survivors and caregivers decreases their quality of life (QOL), previous research has not yet analyzed the role of potential moderators in the relationship between the above two variables. Aims: To examine the moderating effect of caregiver preparedness between depressive symptoms and QOL in stroke survivor and caregiver dyads. Methods: Longitudinal design with 222 stroke survivor-caregiver dyads enrolled at survivor discharge from rehabilitation hospitals. Data collection was performed over 12 months. We measured survivor and caregiver QOL dimensions (physical, psychological, social and environmental), depression and preparedness. Hierarchical Linear Modeling was used to test four longitudinal dyadic moderation models (one for each QOL domain). Results: Survivors (50% males) and caregivers (65% females) were 70.8 (SD=11.9) and 52.5 (SD=13.1) years old, respectively. Controlling for baseline covariates, caregiver preparedness significantly moderated the association between survivor depressive symptoms and survivor psychological (B = 0.56, p &lt; .01) and environmental (B = 0.58, p &lt; .01) QOL at baseline and social QOL over time (B = 0.24, p &lt; .05). In each case, higher levels of caregiver preparedness were protective and buffered the influence of survivor depressive symptoms on survivor QOL. Similarly, caregiver preparedness significantly moderated the association between caregiver depressive symptoms and caregiver physical (B = 0.25, p &lt; .01) and environmental (B = 0.18, p &lt; .05) QOL over time. Conclusions: Caregiver preparedness is a positive variable for both members of the dyad and the paper highlights the importance of implementing tailored intervention which could improve caregivers’ preparedness already during the rehabilitation period.

Abstract TP379: The Impact of a Nurse Navigator-Centered Discharge Plan on Care Transitions for Patients Discharged From a Comprehensive Stroke Center

Background: An effective care transition plan at the time of a stroke discharge impacts risk factor control, readmissions, and patient satisfaction. In our Comprehensive Stroke Center (CSC), we assigned a registered nurse to be our Stroke Nurse Navigator (SNN). The SNN meets with patients and caregivers prior to discharge to address care transition needs and answers the Stroke Nurse Helpline to provide assistance after discharge. Purpose: To assess the impact of the SNN in meeting care transition needs of patients discharged home from a CSC Methods: Stroke patients in our CSC are called within 72 hours after home discharge, and a standard questionnaire is used to assess satisfaction with the discharge process. We compared post-discharge callback data from stroke patients during a 6-month period before (1/1/18 to 6/30/18) and after (7/1/18 to 12/31/18) designation of the SNN. Results: Among 413 stroke patients who completed questionnaires, 207 were pre-SNN and 206 were post-SNN, representing 55% and 47% of home discharges respectively. There was a 46% decrease in all concerns: 74% in non-clinical concerns, 70% in complaints about hospital experience, and 45% in reported early admissions (Table 1). There were fewer reported concerns about activity restrictions and assistive devices (100% decrease), outpatient therapy (76% decrease), prescriptions (75% decrease), outpatient testing (60% decrease), and other discharge information (29%). There were more concerns related to clinical symptoms after hospitalization (36% increase), establishing care with primary provider or neurologist (36% increase), and understanding home medications. Conclusion: SNNs may play a role in meeting care transition needs of stroke patients by providing assistance before and early after a home discharge. SNNs may foster heightened awareness among stroke patients and caregivers about following through on recommended post-hospital care for better recovery outcomes.

Abstract TP177: Stroke Camp Provides Respite for Caregivers of Stroke Survivors

Background: Stroke is the leading cause of disability in the US. Approximately one in four patients with stroke is disabled. Providing daily care to stroke survivors long term is very burdensome to the family. The wellbeing and respite of the care givers (CG) has not been studied well in the past. In this study, we focused on quality of life (QOL) of the CGs of stroke survivors. The Retreat and Refresh Stroke Camp (RRSC), initiated in 2004, offers respite, opportunities to develop new relationships, and provides education/access to resources to CG. Methods: QOL of a convenience sample of stroke CG attending the Retreat and Refresh Stroke Camp (RRSC) in 2016 -2018 was assessed using the Adult Carer Quality of Life Questionnaire (ACQOLQ). The ACQOLQ addresses 8 subcategories of QOL: support for caring, caring choice, caring stress, financial matters, personal growth, sense of value, ability to care, and care satisfaction. A high (11+) subcategory score indicates high quality of life in that category and a low score (0-5) indicates a low quality of life and potential difficulties. Emails were sent to all CG with a link to the survey on Survey Monkey. Results were analyzed using descriptive statistics and Student t test was used to compare QOL between females and males. Results: A total of 149 CG were assessed including 123 (83%) females and 26 (17%) males. The majority (91%) were Caucasian Americans. The average age was 61.8 (SD=11.7) years old with a range of 27 to 86 years. More than half (56.1%) worked over 40 hours per week. The average of caring time was 7 (SD=6.6) years. The average total score of ASQOLQ was 62.4 (SD=8.9) and the average score in eight subcategories varied between 6.4 and 10.1, indicating a moderate quality of life. Females had a higher score of caring stress than males (6.7 vs 5.2, p=0.027), but no difference was found in other subcategories. Conclusion: Women are the primary caregivers for stroke survivors and bear a significantly higher burden of caring stress. Society should focus more attention to provision of resources to assist in relieving this burden. A camp opportunity for supporting caregivers and survivors may help in providing respite to these family members

Effect of 5-Minute Movies Shown via a Mobile Phone App on Risk Factors and Mortality After Stroke in a Low- to Middle-Income Country: Randomized Controlled Trial for the Stroke Caregiver Dyad Education Intervention (Movies4Stroke).

BackgroundPakistan is the sixth most populous nation in the world and has an estimated 4 million stroke survivors. Most survivors are taken care of by community-based caregivers, and there are no inpatient rehabilitation facilities.ObjectiveThe objective of this study was to evaluate the effectiveness and safety of locally designed 5-min movies rolled out in order of relevance that are thematically delivered in a 3-month program to deliver poststroke education to stroke survivor and caregiver dyads returning to the community.MethodsThis study was a randomized controlled, outcome assessor–blinded, parallel group, single-center superiority trial in which participants (stroke survivor-caregiver dyads) with first-ever stroke (both ischemic and hemorrhagic) incidence were randomized within 48 hours of their stroke into either the video-based education intervention group or the control group. The video-based education intervention group had health education delivered through short videos that were shown to the participants and their caregivers at the time of admission, before discharge, and the first and third months of follow-up after discharge. The control group had standardized care including predischarge education and counseling according to defined protocols. All participants enrolled in the video education intervention and control groups were followed for 12 months after discharge for outcome assessment in the outpatient stroke clinics. The primary outcome measures were the proportion of participants achieving control of blood pressure, blood sugar, and blood cholesterol in the video intervention versus the control group. Several predefined secondary outcomes were included in this study, of which we report the mortality and functional disability in this paper. Analysis was by performed using the intention-to-treat principle.ResultsA total of 310 stroke survivors and their caregiver dyads (participant dyads) were recruited over a duration of 6 months. In total, 155 participant dyads were randomized into the intervention and control groups, each. The primary outcome of control of three major risk factors revealed that at 12 months, there was a greater percentage of participants with a systolic BP<125 mm Hg (18/54, 33% vs 11/52, 21%; P=.16), diastolic BP<85 mm Hg (44/54, 81% vs 37/52, 71%; P=.21), HbA1c level<7% (36/55, 65% vs 30/40, 75%; P=.32), and low-density lipoprotein level<100 mg/dL (36/51, 70% vs 30/45, 67%; P=.68) in the intervention group than in the control group. The secondary outcome reported is the mortality among the stroke survivors because the number of stroke-related complications was higher in the control group than in the intervention group (13/155, 8.4% vs 2/155, 1.3%), and this difference was statistically significant (P<.001).ConclusionsThe Movies4Stroke trial failed to achieve its primary specified outcome. However, secondary outcomes that directly related to survival skills of stroke survivors demonstrated the effectiveness of the video-based intervention on improving stroke-related mortality and survival without disability.Trial RegistrationClinicalTrials.gov NCT02202330; https://www.clinicaltrials.gov/ct2/show/NCT02202330

My Stroke Journey: From Self-Advocacy to Patient Advocacy.

My Stroke Journey: From Self-Advocacy to Patient Advocacy.