Carers Of Stroke Survivors Research Articles

Abstract TP183: Race/ethnic Differences in Social Network Characteristics Among Stroke Survivors

Family and friends have become increasingly responsible for providing informal care for stroke survivors. Studies have noted race/ethnic variation in caregiving of older adults and those with dementia or cancer, but few have described social networks of stroke survivors and examined network characteristics by race/ethnicity. As part of the Discharge Educational Strategies for Reduction of Vascular Events (DESERVE) trial, stroke/TIA patients were asked to identify up to 5 persons (“alters”) with whom they discuss important matters and provide information about each relationship. Network characteristics included median number of alters; having an alter in the same household, someone who talks with the participant every day, or with whom they discuss health concerns; relationship “closeness”; and having a family-only (vs. family and friend) network. Household composition was also recorded. Network characteristics were described overall and by race/ethnicity using frequencies and Wilcoxon rank-sum and Chi-square tests. Of the 500 study participants, most identified at least one alter (86%), 61% had an alter in their household, 88% talked to an alter every day, 82% were extremely/very close with all alters identified, 96% discuss health concerns with an alter, and 74% had a family-only network. Less than 27% lived alone, 21% with a spouse only, 15% with a non-spouse, and 38% with >1 person. NHBs and Hispanics were more likely than NHWs to identify no alters (19% and 16% vs. 8%, p=0.006) but talk to an alter every day (90% and 92% vs. 79%, p=0.007). NHWs were more likely to live in the same household as an alter than NHBs and Hispanics (67% vs. 53% and 59%, p=0.006). Hispanics had greater prevalence of having a family-only network than NHWs and NHBs (83% vs. 71% and 68%, p=0.014). NHWs were more likely to live with a spouse, while NHBs and Hispanics were more likely to live with a non-spouse or with >1 person (p<0.001). Given the importance of social networks in the aftermath of stroke, understanding the structure of different types of networks will help inform targeted interventions to promote vascular risk factor management and reduce race/ethnic disparities in stroke outcomes.

Abstract TP381: Evaluation Of A Modified Home Care Intervention For Stroke Patients In Transition From Hospital To Home

Introduction: In the past two decades, there has been 84% increase of stroke prevalence in China. Since transitional care facilities are lacking in China, most of the stroke survivors return home after discharged from acute hospital setting. Routine disease-oriented discharge planning does not match individual home care needs. Objective: To evaluate the effectiveness of a modified home care (HC) intervention to facilitate the transition of care for stroke survivors from hospital to home. Methods: Using a quasi-experimental study design, stroke survivors from a 115-bed stroke unit in teaching hospital in China were recruited. HC subjects (n=168) received nurse-led pre-discharge preparation and post-discharge follow-ups, which beganon admission until 30-days post hospital discharge(a total of 4 hours,5 sessions,48 minutes on average). Hospital length of stay (LOS), stroke-related readmission rates, ability to perform activities of daily living (ADLs), and medication adherence were assessed at 30-days post-discharge. Historical controls (n=173)that received routine discharge planning, including standardized patient education about stroke and one telephone follow-up, were used as the comparison group (CG). Results: Subjects were on average 65.10 years old, 51% women, 74% ischemic stroke, 26% hemiparesis. The HC group had significantly better outcomes with a reduced hospital LOS(HC=11.3±2.2days vs.CG=12.4±4.3 days, p = 0.03), decreased stroke-related readmission rate(HC=1.2% vs.CG=6.4%, p = 0.02), increased ability to perform ADLs observed by Barthel Index. (HC=38.3±10.2vs.CG=32.1±10.3, p = 0.03) and medication adherence (HC=95.8%vs.CG=53.2%, p = 0.004), compared to CG. Conclusions: Our findings suggest that the modified HC intervention, incorporating nursing care planning and follow-ups across care settings, is effective in enhancing the transition from hospital to home, in terms of hospital care utilization and patient outcomes.

Abstract WP156: Assessment and Provision of Rehabilitation Among Acute Ischemic Stroke Patients Hospitalized in China: Findings From the China National Stroke Registry II

Background: Stroke rehabilitation improves functional recovery among stroke patients. However, little is known about clinical practice in China regarding the assessment and provision of rehabilitation among patients with acute ischemic stroke (AIS). Aims: We examined the frequency and determinants of an assessment for rehabilitation among AIS patients from the China National Stroke Registry II. Methods: Data for 19,294 AIS patients admitted to 219 hospitals from June 2012 to January 2013 were analyzed. The multivariable logistic regression model with the generalized estimating equation method accounting for in-hospital clustering was used to identify patient and hospitals factors associated with having a rehabilitation assessment during the acute hospitalization. Results: Among 19,294 AIS patients, 11,451 (59.4%) were assessed for rehabilitation. Rehabilitation assessment rates varied considerably among centers: median 64.8% (interquartile range: 41.4%-83.3%). Factors associated with increased likelihood of a rehabilitation assessment in the multivariable model (p<0.05) included disability prior to this stroke, increasing NIHSS on admission, receiving dysphagia screening, deep venous thrombosis prophylaxis, and carotid vessel imaging, longer length of stay, and increasing hospital beds (per 100 units). In contrast, patients with a history of atrial fibrillation, and increasing annual stroke discharges (per 100 patients) were less likely to receive rehabilitation assessment during the acute stroke hospitalization. Conclusions: Up to a third of patients in China do not receive rehabilitation assessment follow an AIS. Thus, there appears to be opportunities to improve adherence to recommended care for stroke survivors in China.

A Qualitative Study of Family Caregiver Experiences of Managing Incontinence in Stroke Survivors.

BackgroundIncontinence is a common problem faced by family caregivers that is recognized as a major burden and predictor of institutionalization. However, few studies have evaluated the experiences of family caregivers caring for stroke survivors with incontinence.PurposeTo describe experiences of caregivers managing incontinence in stroke survivors.DesignThis qualitative descriptive study employed a grounded-theory approach.MethodsSemi-structured in-depth interviews with ten family caregivers of stroke survivors with incontinence were conducted during 2011. Audiotaped interviews were transcribed and analyzed using content analysis.FindingsData analysis identified four themes: chaos, hypervigilance, exhaustion, and creating a new life. There were nine related subcategories: fluster, dirtiness, urgency, fear of potential health-hazard, physically demanding and time-consuming, mentally draining, financial burden, learning by doing, and attitude adjustment. Together, these described a process of struggling to cope with the care of stroke survivors with urinary/fecal incontinence. Of the four categories, “creating a new life” developed gradually over time to orient caregivers to their new life, while the other three categories occurred in a chronological order.ConclusionThe research highlighted unique caring experiences of family caregivers of stroke patients, which focused solely on the ‘incontinence issue’. Understanding these experiences may help nurses provide better support and resources for family caregivers when caring for stroke survivors with incontinence.

Care Provision for Poststroke Visual Impairment

We sought to explore the care provision for poststroke visual impairment and variations in this in the United Kingdom. Survey questions were developed and piloted with clinicians, academics, and users. Questions addressed types of visual problems; how these were identified, treated, and followed up; care pathways in use; links with other professions; and referral options. The survey was accessed via a Weblink, which was circulated through UK professional organizations to multiprofessional members of ophthalmic and stroke teams. A total of 548 completed electronic surveys were obtained. In all, 49.5% of respondents represented stroke teams, 42.5% eye teams, and 8% from other teams, for example, emergency care. Many respondents (41%) saw patients within 1 week of stroke. Nineteen percent did not personally test vision: 11% had a visiting clinician to test vision, and 22% used screening tools. Validated tests were used for the assessment of visual acuity (39.5%), visual field (57.5%), eye movement (48.5%), and visual function (58.5%). Visual problems suspected by family or professionals were high (88.5%). Typical overall follow-up period of vision care was less than 3months. In all, 46% of respondents used designated care pathways for stroke survivors with visual problems; 33.5% of respondents did not provide visual information leaflets. Significant inequality exists in care for stroke survivors who experience visual problems. There is great variability in how vision screening is undertaken, which vision tests are used, methods of referral to eye care services, how visual problems are managed, and what vision information is provided tostroke survivors/carers. Further work is required to ensure equality and effectivecare.

Abstract NS16: What’s Important for Post-Stroke Community Re-integration? Viewpoints of Stroke Survivors and Service Providers in Ontario, Canada

Background: Stroke is a leading cause of disability worldwide. Stroke survivors living in the community require regular, ongoing, and coordinated services to prevent deterioration and maximize health outcomes. Published evidence, often conducted in large urban centres, suggests that community reintegration services are an important component of care for stroke survivors. This evidence, however, often does not address the particular challenges inherent in servicing stroke survivors who reside in smaller urban and rural contexts. Purpose: The purpose of this study was to gain an understanding of the priorities that are needed to support stroke recovery and community reintegration from the perspectives of survivors and service providers living in four geographic districts in Northeastern Ontario, Canada. Methods: Using Q methodology, 45 service providers, and 43 stroke survivors and their family caregivers ranked 30 theoretical statement cards. Each card identified a feature specific to stroke recovery, community navigation and community reintegration. These statements were generated through a review of health care literature and qualitative data collected from interviews with stroke survivors. Q analysis of the priority ranked statements involved centroid factor analysis and varimax rotation. Results: The three discrete viewpoints of survivors were Role of Skilled Navigators, Survivors as Co-navigators, and Striving for Well-being. The survivors’ consensus perspective, labelled Quality Service, identified the importance of timeliness and appropriateness of service. The three discrete viewpoints for service providers were Role of Skilled Navigators, Survivor-centered Practices, and Optimizing Survivors’ Resources. The consensus perspective of service providers was labelled Involvement of Family Carers. Findings were consistent across all 4 geographic districts. Conclusion: This research suggests that survivors’ and providers’ conceptualized role of community navigators is focused on building upon the strengths and capacity of survivors through cooperative inquiry with multiple stakeholders. A time-sensitive, appropriate, and family involved service structure supports survivor-centric community reintegration.

Burden and Coping Strategies in Caregivers of Stroke Survivors

Introduction: Care of stroke patient is a matter of enduring stress and leads to considerable amount of burden among caregivers. Little is known about the ways in which families cope while caring for a relative with stroke in developing countries. The aim of the present study was to explore burden and coping strategies in caregivers of stroke survivors and identify the relationships between burden and coping strategies among them. Methods: Caregivers were assessed using Zarit burden interview schedule (ZBIS) and Coping checklist (CCL). A descriptive correlation design was used. The sample comprised 100 caregivers of the stroke survivors from selected community setting and outpatient department of different tertiary care hospitals at Punjab. Results: The result revealed that level of burden reported by caregivers of stroke patient was high. The most coping strategies used by caregivers were acceptance, getting social support, problem solving and seeking help of religious things. However, denial and distracting negatively were used as least common coping strategies by caregivers. Burden was positively and significantly associated with denial or blaming coping strategies. Conclusion: Study concluded that caregivers experienced higher degree of burden. Burden was significantly correlated with coping strategies. The study felt, the need of development of psycho educational program to assist caregivers to cope successfully with burden resulting from the care of stroke survivors.

Aphasia blog talk: How does stroke and aphasia affect the carer and their relationship with the person with aphasia?

Background: Carers of stroke survivors with aphasia are at risk of experiencing negative bio-psychosocial consequences and reduced quality of life. So far, in aphasia studies, this has mainly been explored through qualitative interviews and questionnaires. Unsolicited first-person narratives in the form of blogs offer a novel and rich source of data to examine how stroke and aphasia affect the carer and their relationship with the person with aphasia.Aims: This study explored how carers of people with aphasia perceive their roles and responsibilities; it also examined the consequences of carrying out these carer roles and duties, in terms of both the carer’s own well-being and their relationship with the person with aphasia; furthermore, it investigated facilitative factors in their adaptation to the carer role.Methods & Procedures: Publically available blogs written by carers of aphasic stroke survivors, which included information on how stroke and aphasia affect the carer and their relationship with the person with aphasia, were analysed using the Framework Method.Outcomes & Results: The search resulted in nine carer blogs. The number of posts per blog ranged from 13 to 241. For blogs containing over 90 posts, the first and last 30 relevant posts were collected and analysed. New roles and extra responsibilities identified by participants included having to act as therapists, nurses, counsellors, and administrators and carrying out tasks usually assigned to the other person in the relationship. The extra tasks and duties impacted on the carers’ quality of life and their relationship with the person with aphasia in negative ways, such as leading to physical and mental exhaustion, health issues, feeling lonely, and resentful of their circumstances; however, participants also identified positive changes such as new closeness, new appreciation of life, and pride in achievements. A variety of strategies emerged from the data that helped carers adjust to their new roles. Strategies included positive reframing, allocating time to oneself, and seeking support from family and friends. The activity of blogging was also mentioned as having beneficial effects on the carers’ well-being.Conclusions: The study provides further evidence for the specific challenges faced by carers of people with stroke and aphasia; it thus confirms the importance of addressing carer related needs in intervention and considering psychosocial well-being for both the carer and the person with aphasia.

Task Difficulty and Life Changes Among Stroke Family Caregivers: Relationship to Depressive Symptoms

ObjectivesTo investigate differences in stroke caregiver task difficulty and life changes based on level of caregiver depressive symptoms, and to estimate probabilities among task difficulty and life change items. DesignDescriptive analysis of baseline data from an ongoing stroke caregiver intervention trial. SettingHospitals and rehabilitation facilities. ParticipantsCaregivers (N=242; 78.6% women; 47.7% spouses; 71.8% white; mean age, 54.2±12.1y) caring for stroke survivors within 8 weeks of discharge to home. InterventionsNot applicable. Main Outcome MeasuresBaseline measures for task difficulty (Oberst Caregiving Burden Scale) and life changes (Bakas Caregiving Outcomes Scale) were compared based on level of depressive symptoms (Patient Health Questionnaire-9 [PHQ-9] scores <5 means no depressive symptoms; n=126; PHQ-9 scores ≥5 means mild to severe depressive symptoms, n=116). Mean scores were analyzed using general linear modeling, with item analyses using logistic regression and the Benjamini-Hochberg method to control type I error inflation. ResultsCaregivers with mild to severe depressive symptoms have greater difficulty with tasks and worse life changes than those with no depressive symptoms (P<.001). Odds ratios were highest for the task of arranging care while away and for negative life changes (eg, addressing self-esteem, coping with stress, physical health). ConclusionsFindings underscore the importance of depressive symptom screening for stroke caregivers during or shortly after discharge. Assisting caregivers with depressive symptoms to arrange for respite care and addressing negative physical and psychological changes may be priority areas for future interventions.

What Makes Family Caregivers Happy During the First 2 Years Post Stroke?

This study aimed to identify aspects of the caregiving situation contributing to family caregivers' psychological well-being. Longitudinal cohort study with structured quantitative interviews 1, 3, 6, and 12 months post stroke. A subset of participants also completed surveys 18 and 24 months post stroke. Participants included individuals hospitalized for their first stroke and their family caregivers. Psychological well-being was assessed by the Positive Affect Scale. A total of 399 stroke survivor, caregiver dyads completed the 1-year follow-up and 80 dyads completed the second year of follow-up. Using mixed effects modeling for longitudinal data, caregivers reported more psychological well-being when they provided more assistance to stroke survivors who had fewer symptoms of depression, better cognitive functioning, and who had more severe strokes. In addition, caregivers who maintained participation in valued activities had more mastery, gained personally providing care, were in better physical health, were older, and were from Quebec reported more psychological well-being. Caregivers followed for a second year post stroke reported better psychological well-being when caring for stroke survivors with fewer symptoms of depression and more severe strokes and when the caregivers had a greater sense of mastery and gained more personally providing care. Our findings contribute to the caregiver intervention development literature by identifying aspects of the caregiving situation that are associated with positive outcomes. Incorporating specific aspects, for example, strategies to enhance caregiver mastery into programs and services offered to caregivers may enhance their positive experiences with providing care and ultimately enhance the sustainability of the caregiving situation.

Post‐traumatic growth in stroke carers: A comparison of theories

This study examined variables associated with post-traumatic growth (PTG) in stroke carers and compared predictions of two models of PTG within this population: the model of Schaefer and Moos was compared to that of Tedeschi and Calhoun (1992, Personal coping: Theory, research, and application. Westport, CT: Praeger, 149; 1998, Posttraumatic growth: Positive changes in the aftermath of crisis. Mahwah, NJ: Lawrence Erlbaum, 99; 2004, Psychol. Inq., 15, 1, respectively). A cross-sectional survey design was employed. Carers of stroke survivors (N = 71) completed questionnaires measuring PTG, coping style, social support, survivor functioning, age, and carer quality of life. Correlation, multiple regression, and mediation analyses were used to test hypotheses. All carers completing the PTG measure (N = 70) reported growth, but average scores differed from cancer carers (Chambers et al., 2012, Eur. J. Cancer Care, 21, 213; Thombre et al., 2010, J. Psychosocial Oncol., 28, 173). PTG was positively correlated with deliberate and intrusive rumination, avoidance coping, social support, and quality of life. Regression analysis showed that factors identified by Tedeschi and Calhoun (deliberate rumination, intrusive rumination, social support, acceptance coping, survivor functioning) accounted for 49% of variance in PTG, whereas those identified by Schaefer and Moos (active coping, avoidance coping, social support, survivor functioning, and age) accounted for only 21%. Rumination, especially deliberate rumination, explained most variance in PTG and mediated the effect of social support on PTG. The findings add to the limited body of evidence suggesting that stroke carers experience growth. Deliberate rumination and social support are important in explaining growth, and the findings support the model proposed by Tedeschi and Calhoun over that of Schaefer and Moos. What is already known on this subject? Literature on caring for stroke survivors focuses on negative outcomes (Ilse, Feys, de Wit, Putman, & de Weerdt, 2008) to the exclusion of positive outcomes such as post-traumatic growth (PTG; Calhoun & Tedeschi, 1999). Studies of a variety of health conditions have demonstrated that PTG occurs in patients and carers after illness events and is associated with well-being (Gangstad, Norman, & Barton, 2006; Helgeson, Reynolds, & Tomich, 2006; Kim, Schulz, & Carver, 2007). Exploratory studies and studies of benefit finding have shown that PTG occurs in stroke carers (Bacon, Milne, Sheikh, & Freeston, 2009; Buschenfeld, Morris, & Lockwood, 2009; Haley et al., 2009; Thompson, 1991), but there are no studies using standard instruments to assess PTG in this population. Moreover, current theories posit different explanations for PTG (Schaefer & Moos, 1992, 1998; Tedeschi & Calhoun, 2004), and there is a need for empirical tests (Park, 2010). What does this study add? This study extends knowledge by measuring PTG with a standard instrument in a sample of UK stroke carers and investigating associated variables. The study also compared the predictive power of the models of PTG proposed by Tedeschi and Calhoun (2004) and Schaefer and Moos (1992, 1998). PTG was found in UK stroke carers, but levels differed from cancer carers in other countries. Factors associated with PTG were identified; Tedeschi and Calhoun's model best predicted PTG. Deliberate rumination had a direct effect on PTG and also mediated the effect of social support. Deliberate rumination is a possible target for therapeutic interventions to enhance PTG.

The problems faced by informal carers to people with aphasia after stroke: A literature review

Background: In addition to other stroke related impairments, up to 12% of those who survive stroke have ongoing problems with aphasia. Research suggests that informal carers to those with aphasia after stroke experience a greater overall burden of care than those who care for stroke survivors without aphasia. One of the keys to understanding this is a clear appreciation of the problems faced by carers of stroke survivors with aphasia. Aims: Via review of the literature to identify the problems faced by informal carers to those having aphasia after stroke. Methods & procedures: Studies listed in AMED, CINAHL, EMBASE, MEDLINE, and PsycINFO databases were searched for articles published up until 10th June 2012, using specified search terms. Reference lists of papers obtained were hand-searched. The studies were rated according to the appropriateness of the study design and the quality with which the research was executed. The results of studies of higher quality were given greater weighting. Outcomes & Results: Fourteen studies were found that complied with the study criteria. The majority of research was cross-sectional. There was a balance of qualitative and quantitative studies. There were methodological problems with all of the studies. Seven studies were rated as low quality and the remainder were rated as moderate quality. It was established that there is reasonable evidence to suggest that informal carers to people with aphasia after stroke commonly experience problems in the following areas: role changes/new responsibilities, difficulties with social and leisure activities, communication difficulties with the stroke survivor, employment and financial problems, problems in dealing with health professionals, relationship difficulties with the stroke survivor, difficulties in family relationships, lack of support or respite, managing difficult behaviours in the stroke survivor, physical health problems/fatigue, and emotional health problems. Conclusions: This paper provides an update and improvement upon a previous review of the literature in this subject area. There is a lack of longitudinal research and therefore little is known about how the problems experienced by informal carers of stroke survivors with aphasia change over time. Carer gender and carers’ perception of the self-care deficits of the stroke survivor emerge as potentially significant covariables requiring further investigation. Clinical implications of the findings and limitations are discussed.

Abstract TP395: Transition Coaching for Stroke (TRACS): Assessing Health Literacy and Readmissions

Objective: There is a critical need for tailoring transition care for stroke survivors, especially those that address health literacy. The objective of this pilot program is to provide individualized coaching for stroke risk factors at discharge, and to assess the role of health literacy on readmissions. Methods: We enrolled patients discharged home with ischemic or hemorrhagic stroke, or TIA from 9/2011 to 7/2012. Transition coaching was performed one-on-one in the hospital using a take-home packet that included review of a check list of their risk factors, medication information, instructions for stroke awareness, action with new symptoms, and post-hospital follow-up care. Materials were in large font for a 7th to 8th grade reading level, with a one-page summary for ease of reading. Data collection forms were programmed for online data entry of baseline variables (education, prior hospitalizations, health literacy) using REDcap. All cause readmissions within 30 days or longer were obtained from medical records and hospital reports. Results: 90 patients with NIHSS information were enrolled. Mean age was 63.3 yrs (std 14.3), 53% female, 69% white, 30% Black, 68% ischemic stroke, 10% hemorrhagic stroke, 20% TIA, and median NIHSS 2.0 (range 0-27). 16% were not confident filling out medical forms by themselves, 15% needed help with doctor/pharmacy materials, and 5% were not happy with the way they read. 37% preferred to learn new things by reading brochures, 14% preferred someone going over materials with them, 13% watching videos, and 12% by having someone tell them. 41% preferred alternative learning methods outside the choices provided. 22 patients were readmitted, 9 of which were within 30 days of discharge. 33% of those readmitted were not very confident or not confident at all with filling out medical forms vs 11% of those not readmitted (p= 0.026). Although attenuated after adjustment for education, low confidence with medical forms was independently associated with readmission (OR 3.235; 95% CI: 0.819-12.785; p=0.094). Conclusions: Accounting for health literacy and patient preferences for learning should be a key component in transition programs to provide appropriately tailored coaching to reduce adverse outcomes, such as readmissions.

Towards an understanding of the lives of families affected by stroke: a qualitative study of home carers

To explore caring and coping among carers of stroke survivors and identify factors that had an impact on their lives. Informal carers carry the main responsibility for the care of stroke survivors in the community, which can have a detrimental effect on the health and well-being of carers. However, the circumstances of caring differ for each carer: this study identifies the diverse factors that can cause caring to be burdensome for some carers and less so for others. Qualitative descriptive study. A convenience sample of 30 carers of stroke survivors were interviewed in 2008-2010, following hospital discharge of the stroke survivor. The impact that the stroke event had on the participants of this study varied enormously. Not only did the health status and well-being of the stroke survivors vary greatly but it was also clear that many different factors had an influence on the impact of the stroke on the carer and on how each of them coped. Nine thematic categories were identified, which fell into three broad categories: (1) the impact of the stroke event on the carer; (2) the extrinsic factors that support the caring scenario; and (3) the intrinsic factors that help a carer to cope with the new role. This study provided an insight into the circumstances where caring for stroke survivors takes place. These factors that have an impact on caring and carers should inform the nursing assessment of needs of carers of stroke survivors in the community.

Der Problemlöse-Ansatz in der Beratung pflegender Angehöriger von Schlaganfall-Betroffenen – Eine inhaltliche Analyse bearbeiteter Themen

Problem-solving therapies for family caregivers have been described for different dyads and care recipients with various chronic conditions. Only little attention is directed to the specific topics worked on with informal caregivers. This study focuses on the intensive intervention period of 3 months of an individualized mainly telephone-based problem-solving training for informal carers of stroke survivors (TIPS-Study). We present data of 47 strained caregivers who cared for their spouses and partners (n=42) or (grand-)parents (n=5). Results show that effective changes in burden can be achieved with only few contacts concentrating on problems that can be controlled by problem-focused coping mechanisms. Problems that require emotion-focused coping were processed rarely. Future perspectives of the approach are discussed.

Setting up a support group for carers of stroke survivors

A stroke specialist nurse enlisted the help of women carers to develop a self-supporting carers' group in Northern Ireland. Members are offered information, advice and a forum for service improvement suggestions. Two founding members discuss their experiences of attending meetings.

“Sometimes we get it wrong but we keep on trying”: A cross-sectional study of coping with communication problems by informal carers of stroke survivors with aphasia

Background: The need to support carers of stroke survivors is widely recognised. However, research on which to base recommendations is scarce. Little research has focused on carers of stroke survivors with aphasia, and that which exists suffers from problems with sample size and methodology. More information is needed about methods used by carers to manage communication difficulties and about coping strategies that promote emotional wellbeing. Aims: To assess the coping strategies used by informal carers of stroke survivors with aphasia to manage communication problems, and their association with depressive symptoms. To assess whether a problem-specific coping inventory offers an advantage over a generic coping questionnaire for this purpose. Methods & Procedures: Questionnaires were completed by 150 informal caregivers of stroke survivors with aphasia. The Centre for Epidemiologic Studies Depression Scale measured depressive symptoms. Coping was assessed with the Brief COPE and a problem-specific questionnaire on coping with communication difficulties. Level of social support was also assessed. Multiple regression analysis explored associations between coping and depressive symptoms. Mediation analysis assessed the significance of the indirect effect of coping between the level of communication impairment in the stroke survivor and the degree of depressive symptoms in the carer. Outcomes & Results: Participants reported a wide range of coping strategies. Avoidant styles of coping were associated with increased depressive symptomatology. Coping by use of positive reframing was linked with fewer symptoms of depression. Anticipated level of social support was also associated with less depressive symptomology. The level of communication impairment of the stroke survivor was not predictive of depressive symptoms in carers after controlling for coping and social support. Limited support was found for a mediating model of coping. Inclusion of one subscale from the problem-specific questionnaire improved the amount of variance accounted for in depressive symptoms, above that explained by the Brief COPE. Conclusions: The results verify that the impairment of the stroke survivor has less effect on carers' psychosocial functioning compared to coping. Assessment of coping can help to identify carers presenting with increased risk of depression. A traditional coping inventory provides an adequate assessment of the coping strategies used to manage communication problems, and can be supplemented by specific questions about avoidance. Interventions that develop some emotion-focused coping strategies in carers may support adaptation. Interventions should also aim to decrease the use of unhelpful coping strategies rather than solely focusing on increasing problem-focused forms of coping.

Models and Systems of Elderly Care : Lack of Continuity of Rehabilitation Care for Stroke Survivors : Iranian Family Caregivers’ Experience

Models and Systems of Elderly Care : Lack of Continuity of Rehabilitation Care for Stroke Survivors : Iranian Family Caregivers’ Experience

Stroke Training and Education for Health and Social Care Staff: a Partnership between the NHS and the Voluntary Sector

Following the Scottish Stroke Services Audit published in 1999, Chest Heart and Stroke Scotland (CHSS) commissioned the Scottish Association of Health Councils to undertake a survey of patient and carers' views of Scottish stroke services. Survey results suggested stroke carers perceived that staff caring for stroke survivors often showed a lack of awareness of the specific challenges that stroke presented. The report recommended that Chest Heart and Stroke Scotland should work with professional bodies to develop awareness training for staff working in stroke care.

Behavioral Symptoms in Long-Term Survivors of Ischemic Stroke

The range of behavioral changes occurring after stroke has not yet been fully characterized. To evaluate behavioral symptoms after stroke and clinical characteristics that may influence the number and frequency of such symptoms, we compared 53 survivors of mild ischemic stroke with 30 stroke-free controls. Stroke survivor and control participants completed self-ratings of behavioral symptoms and were administered measures of cognitive status (ie, Beck Depression Inventory II, Mini-Mental State Examination, and Controlled Oral Word Association Test). Informants of stroke survivors and controls completed ratings of behavioral symptoms and functional status (ie, Neuropsychiatric Inventory Questionnaire, Informant Questionnaire on Cognitive Decline in the Elderly, and Functional Activities Questionnaire). More behavioral symptoms were observed in stroke survivors than in controls (mean [standard deviation] total number of symptoms on the Neuropsychiatric Inventory Questionnaire, 2.1 [2.0] vs 1.1 [1.5]; P = .02). Informants of stroke survivors were more likely to recognize behavioral symptoms than were stroke survivors themselves. Higher initial stroke severity was associated with more behavioral symptoms. With more behavioral symptoms, there was more functional impairment. Our findings suggest that behavioral symptoms can have unique and troublesome effects on stroke patients. Future research is needed to understand how the identification of behavioral symptoms after stroke can improve care in stroke survivors.