Stroke Caregivers Research Articles

Psychometric Properties of Persian Version of the Bakas Caregiving Outcomes Scale.

Background:Caregivers of stroke patients have many problems due to caring for patients. This study aimed to evaluate the psychometric properties of the Persian Version of the Bakas Caregiving Outcomes Scale (BCOS) in caregivers of stroke patients.Materials and Methods:This methodological study was conducted in 2018 with 191 caregivers of stroke patients. In order to assess the scale validity and reliability, the face, content, internal consistency, stability of the scale, and construct validity (exploratory and confirmatory factor analysis) were done.Results:The scale face and content validity qualitatively were checked and confirmed by caregivers' and experts' opinions. In the reliability, Cronbach's alpha was obtained to be 0.93. The test-retest was conducted on 30 participants and showed good stability after 2 weeks. The Intraclass Correlation Coefficient (ICC) for the total scores was reported to be 0.94. The Kaiser-Meyer-Olkin p value was 0.90, Bartlett's sphericity test was significant (p < 0.001), in the exploratory factor analysis, 2 factors with 14 items were extracted. The confirmatory factor analysis confirmed the appropriate model with 14 items (removal of item 13) with two factors at the expected level.Conclusions:The Persian version of the 14 items of the BCOS indicates satisfactory reliability, and validity in the Iranian caregivers of stroke patients.

Family function, self-efficacy, care hours per day, closeness and benefit finding among stroke caregivers in China: A moderated mediation model.

The aim of this study was to explore the moderated mediation mechanism of the relationships among family function, self-efficacy, care hours per day, closeness and benefit finding in family caregivers of patients with stroke in China. Benefit finding can provide a new means of resolving depression among family members caring for an ill loved one. However, current research has paid little attention to the benefit finding of family caregivers of stroke patients in China. A cross-sectional study. Three hundred fifty family caregivers of patients with stroke were recruited from community service centres and hospitals in Zhengzhou, China. The participants completed the family APGAR index, caregiver benefit finding scale and Chinese general self-efficacy scale during a study conducted in 2017. Descriptive analyses and a moderated mediation model were computed. Reporting adhered to the STROBE checklist. A total of 311 family caregivers completed this study. Closeness between family caregivers and patients with stroke moderated the relationship between family function and caregiver benefit finding. Self-efficacy partially mediated the relationship between family function and caregiver benefit finding; moreover, care hours per day moderated the mediation. This study shows important factors associated with benefit finding in family caregivers of patients with stroke. This indicates elements that could help improve benefit finding intervention programmes for family caregivers of patients with stroke. The findings in our study provide valuable information on benefit finding and indicate some interventions to improve the mental health of family caregivers of stroke patients.

Psychometric Properties of the Preparedness Assessment for the Transition Home (PATH) in Caregivers of Patients with Brain Injury, Spinal Cord Injury, Orthopedic Trauma and Neurological Conditions

<h3>Research Objectives</h3> The Preparedness Assessment for the Transition Home (PATH) is a 25-item validated survey that significantly predicts 30-day and 90-day outcomes on the health-related quality of life of caregivers of patients in an Inpatient Rehabilitation Facility (IRF). Originally validated for stroke caregivers, the present study validates the PATH on a broader IRF population. <h3>Design</h3> A consecutive cohort of family caregivers of IRF patients admitted 10/1/2019 through 7/31/2021 and followed longitudinally up to 90-days post-discharge. <h3>Setting</h3> An IRF in Northern California. <h3>Participants</h3> 325 caregivers of IRF patients completed the PATH (Brain Injury, N = 131; Spinal Cord Injury, N = 103; Orthopedic Conditions/Major Multiple Trauma, N = 56; Neurological Disorders, N = 35). <h3>Interventions</h3> N/A. <h3>Main Outcome Measures</h3> (1) Internal Consistency Reliability: by computing Cronbach's alpha of the PATH responses for each caregiver sub-group. (2) Predictive validity by investigating the correlation between the PATH and 30-day and 90-day outcomes on caregiver strain and global health. <h3>Results</h3> Overall PATH completion rate was 71.4% (325 caregivers). The 30-day and 90-day attrition was 34% and 48% respectively. Internal consistency reliability for the PATH was 0.91, 0.88, 0.91, and 0.88 for caregivers of patients with Brain Injury, Spinal Cord Injuries, Orthopedic/ Major Multiple Trauma, and Neurological Disorders, respectively. The PATH significantly predicted 30-day and 90-day outcomes in the brain injury and orthopedic groups, 30-day outcomes in the spinal cord injury group, and 90-day outcomes in the neurological disorders group. <h3>Conclusions</h3> The PATH demonstrates excellent psychometric properties when administered for a broad range of IRF caregivers. Future research is needed on the validity of the PATH in different care settings and regions, as well as its reliability among heterogenous caregivers. <h3>Author(s) Disclosures</h3> Michelle Camicia is a course instructor for MedBridge Inc. Barbara Lutz is a consultant and course instructor for MedBridge Inc. Brian Theodore has no disclosures for conflicts of interest. Cristine Ray has no disclosures for conflicts of interest.

The experience of stroke survivors and caregivers during hospital-to-home transitional care: A qualitative longitudinal study

BackgroundStroke survivors and their caregivers experience different difficulties that arise from certain physical, psychological, social aspects and caring burdens during the hospital-to-home transitional period. Although there are abundant studies that focus on stroke transitional care, there are limited qualitative studies that synthesize the experience of hospital-to-home transitional care for stroke survivors and their caregivers in China. ObjectiveTo evaluate the experience of stroke survivors and their family caregivers during hospital-to-home transitional care in China. MethodsA qualitative longitudinal study based on semi-structured interviews were implemented to address the research objective. Interviews were conducted at two stages, (1) when stroke survivors were close to discharge, and (2) within two months post-discharge. Participants were recruited from one tertiary hospital between April and September 2019. Data were analyzed using reflexive thematic analysis. FindingsTwenty-three stroke survivor/caregiver dyads participated, totaling 92 individual interviews. The thematic framework based on the experience of stroke survivors and caregivers reveals a three-phases of the hospital-to-home trajectory: survived, living in the mist, and crisis at home. The study identified one key theme (the optimism and hope) in the first phase, four key themes in the second (the pre-discharge emotional concerns and reactions, lack of stroke knowledge and stroke care information, difficulties of performing home-based healthcare, expectation of hospital pre-discharge) and in the third phase (high level of post-discharge stress, inaccessible postdischarge care services and health resources, interpersonal relationship disruption and lifestyle changes, financial burdens) respectively. In addition, several interconnected subthemes for stroke survivors’ and caregivers’ experiences were identified in each phase. ConclusionThe experience of stroke survivors and caregivers during hospital-to-home transitional care is a dynamic process with enormous challenges in each phase. These findings have implications for policymakers and health care systems regarding developing an enabling environment that supports successful hospital-to-home transitional care. Collaboration with health care professionals, accessible rehabilitation services and follow-up support after discharge, and available community and social support are warranted to be integrated into transitional care to help stroke survivors and caregivers to facilitate their hospital-to-home trajectory.

Formal Health and Social Services That Directly and Indirectly Benefit Stroke Caregivers: A Scoping Review of Access and Use.

Stroke can be a life altering event that necessitates considerable amounts of formal and informal care. The impacts of stroke often persist over time requiring ongoing support for stroke survivors. Family members provide the majority of care and experience many life changes as a result of their caregiving role including social, financial, employment and health impacts. Formal supports such as counselling, respite, and health promotion initiatives that directly benefit caregivers or benefit them indirectly through supporting the stroke survivor, are well-placed to help caregivers manage their caregiving role. However, to date little is known about formal service use by stroke caregivers and the factors that influence their service use. This scoping review provides a critique and synthesis of what is known about stroke caregivers’ access and use of formal services intended to support them. Findings suggest that while services are available, caregivers’ ability to use them are impacted by both facilitators and barriers. Facilitators included: sex, age, and having a higher household income (depending on services used). Barriers included: high cost, poor service quality and deficient knowledge/communication regarding service availability. This review highlights a significant gap in our knowledge of caregivers’ experience in accessing and using formal services.

Abstract WP92: Healing Strokes: Virtually Improving Stroke Survivors And Caregivers’ Well-being Through Student-run Art Therapy Support Group

Background: Depression and anxiety impact recovery and quality of life in 1 in 3 stroke survivors. Caregivers also experience burnout. Creative art-based therapy boosts feelings of accomplishment, self-esteem, and neuroplasticity by stimulating diverse brain regions. Few outpatient art therapy programs exist for stroke survivors and caregivers, limited further during the COVID-19 pandemic. We aim to implement an outpatient, student-run virtual art therapy curriculum using a patient-carer team approach to foster a supportive peer community, reduce depressive symptoms in survivors, and increase relief for caregivers. Methods: A multidisciplinary team of stroke physician, nurse, occupational therapist, clinic managers, and undergraduate student volunteers created an evidenced-based art therapy curriculum feasible for stroke survivors. An art educator trained volunteers in empathetic communication, teaching techniques, and patient privacy. Participants pre-registered for weekly 1 hour classes held via video conference and received art materials by mail. We administered surveys at initial registration and quarterly. An institutional grant provided funding. Results: From September 2020 - July 2021, Healing Strokes hosted 30 classes using the curriculum (Table 1) for 71 survivors and caregivers from 9 states at a 1:5 volunteer-to-participant ratio. 20 participants (14 survivors, 6 caregivers) self-reported benefits of peer support, creative inspiration, increased sense of accomplishment, and improvement in speech and fine motor skills. Conclusion: Implementation of a virtual outpatient art-based therapy program for stroke survivors and caregivers is feasible with participants self-reporting benefits in functional recovery and mood. Post-stroke supportive care programs can expand to include art therapy during a pandemic. Future studies can validate the impact on peer support, function, and post-stroke depression and anxiety.

Roles and Problems of Stroke Caregivers: A Qualitative Study in Yogyakarta, Indonesia.

Background: Caregivers play a central role in post-stroke patients' care. However, the role of and problems managed by caregivers have not been widely studied, particularly in Indonesia. This study aims to explore the roles and problems of caregivers in post- stroke patients' care. Method: This was a qualitative study. Seven caregivers of post-stroke patients from the homecare clinic of Dr Sardjito General Hospital were purposely selected during January 2017 to June 2018. Focus group discussions were conducted to explore the roles and problems of caregiving. Results: Themes related to caregivers' roles were: connecting patients with medical personnel and other family members, maintaining patients' health conditions by fulfilling basic needs and assisting rehabilitation, as well as maintaining patients' psychological conditions by encouraging conversation, telling jokes, or recreation. On the other hand, themes related to caregivers' problems were: lack of knowledge caused by education inadequacy, underappreciated and unconcerned family, suboptimal service including limited physiotherapy and pharmacy resource, unthorough administration, lack of communication, physical limitations, and burnout, as well as uncooperative patients. Conclusions: Caregivers play essential roles as communicators and help to maintain patient's health conditions. Common problems are related to a lack of knowledge about strokes and a lack of attention from family. Further research to study the effects of these findings on the quality of life of both patient and their caregiver, as well as how to handle the caregiver issues should be investigated.

Roles and Problems of Stroke Caregivers: A Qualitative Study in Yogyakarta, Indonesia

Background: Caregivers play a central role in post-stroke patients' care. However, the role of and problems managed by caregivers have not been widely studied, particularly in Indonesia. This study aims to explore the roles and problems of caregivers in post- stroke patients’ care. Method: This was a qualitative study. Seven caregivers of post-stroke patients from the homecare clinic of Dr Sardjito General Hospital were purposely selected during January 2017 to June 2018. Focus group discussions were conducted to explore the roles and problems of caregiving. Results: Themes related to caregivers’ roles were: connecting patients with medical personnel and other family members, maintaining patients’ health conditions by fulfilling basic needs and assisting rehabilitation, as well as maintaining patients’ psychological conditions by encouraging conversation, telling jokes, or recreation. On the other hand, themes related to caregivers’ problems were: lack of knowledge caused by education inadequacy, underappreciated and unconcerned family, suboptimal service including limited physiotherapy and pharmacy resource, unthorough administration, lack of communication, physical limitations, and burnout, as well as uncooperative patients. Conclusions: Caregivers play essential roles as communicators and help to maintain patient's health conditions. Common problems are related to a lack of knowledge about strokes and a lack of attention from family. Further research to study the effects of these findings on the quality of life of both patient and their caregiver, as well as how to handle the caregiver issues should be investigated.

Utilization of social media communities for caregiver information support in stroke recovery: An analysis of content and interactions.

Caregivers often use the internet to access information related to stroke care to improve preparedness, thereby reducing uncertainty and enhancing the quality of care. Social media communities used by caregivers of people affected by stroke were identified using popular keywords searched for using Google. Communities were filtered based on their ability to provide support to caregivers. Data from the included communities were extracted and analysed to determine the content and level of interaction. There was a significant rise in the use of social media by caregivers of people affected by stroke. The most popular social media communities were charitable and governmental organizations with the highest user interaction-this was for topics related to stroke prevention, signs and symptoms, and caregiver self-care delivered through video-based resources. Findings show the ability of social media to support stroke caregiver needs and practices that should be considered to increase their interaction and support.

MHealth intervention for carers of individuals with a history of stroke: Heuristic evaluation and user perspectives.

BackgroundCaregiving in stroke is complex, with most carers having little to no preparation to care for individuals with a history of stroke, leading to emotional impact. Technologies such as Mobile Health can provide the carer with real-time support and prepare the carer to assume their new roles and responsibilities.ObjectivesTo perform a heuristic evaluation of mHealth interventions designed to support carers of individuals with a history of stroke and determine the user preferences in stroke caregiving technology to inform future researchers and developers regarding the best practices to support these individuals.MethodsTwenty adults (i.e. 10 usability experts and 10 carers) participated in an iterative user-centred design study that focused on developing and modifying the mHealth intervention (StrokeCaregiver (SeCr)) created to support stroke caregiving. The intervention was repeated in four cycles, including two cycles with five usability experts each and five carers each.ResultsSeCr was iteratively improved to develop a highly usable product in multiple cycles. Participants demonstrated critical needs in personalized information support, communication with their healthcare needs, and the trust of the user, content, and developer. These critical needs are required to be met to promote long-term acceptance and adherence.ConclusionsWhile SeCr was developed to address the needs of carers of individuals with a history of stroke, several considerations must be made to ensure it can be used in a real-world setting. Researchers and developers can use co-design or living lab approaches to further meet the needs and expectations of the carer and enable these individuals to be better prepared for stroke caregiving.

The Effectiveness of Post-Stroke Patient Care Education Intervention in Stroke Caregivers: A Literature Review

Background: Educational interventions about stroke have been carried out by the health workers, one of which is by the nurse. However, the majority of the interventions focus more on the stroke patients than the stroke caregivers. Meanwhile, post-stroke patient care education interventions are urgently needed by the caregivers. Therefore, the author intends to review current literature about post-stroke patient care education interventions on stroke caregivers. Objective: This literature review aims to identify the effectiveness, methods, and impacts of daily care educational interventions for post-stroke patients on stroke caregivers. Methods: The method utilized was by analyzing online databases about the related topics from reputable sources. Seven articles that met the inclusions criteria considering Randomized Controlled Trial (RCT) and Quasi-experimental design, time of publication, and English full text were obtained, and the results were presented. Result: Educational intervention could be carried out by several methods, including direct education at the patient's bedside, lectures followed by questions and answers, and booklets, home visits or telephone follow-up. Educational interventions could improve caregiver knowledge and skills in providing daily care for post-stroke patients, reduce burdens, reduce anxiety and improve the caregiver's quality of life. Educational interventions also positively impacted post-stroke patients, including improving the quality of life, functional abilities and the ability to do daily activities (ADL), reducing cognitive impairment, anxiety, and depression.Conclusion: Daily care education interventions for post-stroke patients can reduce the burden on the caregiver, either physical, psychological or social burdens.

Stroke Caregiver Education: From the Caregivers’ Perspectives

Stroke Caregiver Education: From the Caregivers’ Perspectives

Hope, active coping and well-being in stroke-survivors and caregivers: An actor–partner model analysis

In the US, many employed caregivers make professional adjustments, exacerbating already tenuous balances between work and life. Using the framework of the Stress Process Model (SPM), current research examines the sources of support (both formal and informal) and the contextual factors that facilitate or impede caregiver support. In this research, we examine whether and to what extent caregiver work strain is ameliorated by the presence of additional family caregivers and formal service use. This study utilizes data provided by the National Study of Caregiving (NSOC) data. Using panel methods for the pooled waves, we analyze the associations between work-strain and the number of additional caregivers with utilization of formal support (such as paid service support). Preliminary analyses align with the Stress Process Model as additional caregivers for each respective care-recipient is associated with lower levels of work strain. On the other hand, utilization of formal services (paid help and Medicaid funding) is positively associated with work strain. These findings suggest that the number of additional caregivers can reduce the negative impact of caregiving on work related strain among employed caregivers. That is, multiple caregivers may be more reflective of cooperative arrangements which offset work disruptions that occur with the onset of caregiving. In addition, formal sources may more frequently be used as a last resort to address caregiver burnout. Ongoing analyses are examining changes in the number of caregivers and its impact on disruptive work event, which could lead to financial outcomes for caregivers.

Effectiveness of technology‐based interventions on psychological morbidities, quality of life for informal caregivers of stroke survivors: A systematic review and meta‐analysis

To evaluate the effectiveness of technology-based interventions in reducing psychological morbidities such as depressive symptomology, anxiety, burden and improving quality of life and self-efficacy in informal caregivers of stroke survivors. A systematic review and meta-analysis. An extensive search was systematically undertaken at CENTRAL, PubMed, Embase, Scopus, CINHAL, Web of Science and PsycInfo until January 2021. Grey literature and dissertations were searched in Google Scholar, ProQuest & Scholarbank@NUS. Studies involving registered trials were retrieved from Clinicaltrials.gov and CENTRAL, respectively. Two reviewers independently screened the trials, conducted quality appraisal and extracted the data. Quality of the studies included in the review was assessed using Cochrane Risk of bias tool. Meta-analysis was conducted using RevMan 5.4. Narrative synthesis was performed for studies where results could not be pooled statistically. The results were reported abiding Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. This review included 15 trials with a total of 1276 informal caregivers of stroke survivors. Eleven trials were included in the meta-analysis. Subgroup analyses revealed that technology-based interventions with structured educational programs were statistically significant in reducing depressive symptoms (d=-0.27, 95% CI [-0.49 to -0.05], p=.02). Technology-based interventions with structured educational programs <3-month revealed significant effects (d=-0.31, 95% CI [-0.49 to -0.13], p=.0009). Results of narrative synthesis reported technology-based intervention with face-to-face training minimized depressive symptoms of informal caregivers. Notably, there were no statistically significant effects on anxiety, burden, quality of life and self-efficacy outcomes. Technology-based interventions had beneficial effects in alleviating depressive symptoms among informal caregivers. Technology-based interventions serve as a support mechanism for informal caregivers of stroke survivors who face time-constrains. Further high-quality randomized controlled trials are warranted to elucidate sustainability, optimal format and dosage of intervention.

The Mediating Role of Self-Efficacy in Sleep Disorder and Depressive Symptoms Among Chinese Caregivers of Stroke Inpatients: A Structural Equation Modeling Analysis.

PurposeCaregivers of stroke inpatients are at high risk of sleep disorder, which may lead to depressive symptoms. Self-efficacy has always been regarded as a protective factor against psychological disorders such as depressive symptoms. This study aims to investigate the sleep disorder and depressive symptoms of caregivers of stroke inpatients in China and explore the mediating effect of self-efficacy between sleep disorder and depressive symptoms among Chinese caregivers of stroke inpatients.Patients and MethodsIn this cross-sectional study, a total of 305 caregivers who were hospitalized with stroke patients completed the PROMIS Sleep Disorder Short Form Scale, General Self-Efficacy Scale and Patient Health Questionnaire-9 in two general public hospitals in northeast and southeast China. A structural equation model with bootstrap method was performed to determine the mediation of self-efficacy between sleep disorder and depressive symptoms.ResultsAmong the participants, 55.4% of caregivers reported depressive symptoms. Sleep disorder and self-efficacy were significant predictors of depressive symptoms. The direct impact of sleep disorder on depressive symptoms was positive, and the path coefficient of sleep disorder with depressive symptoms was decreased from 0.45 to 0.38 (P < 0.01) after addition of self-efficacy in the model. This indicated that self-efficacy played as mediator.ConclusionThe caregivers of stroke inpatients were in poor physical and psychological health, and more than half of the caregivers (55.4%) suffered from depressive symptoms. Our research revealed the mediation of self-efficacy between sleep disorder and depressive symptoms, and emphasized the importance of enhancing self-efficacy to reduce depressive symptoms among caregivers of stroke inpatients. These results demonstrate that focusing on self-efficacy interventions can enhance mental health and reduce depressive symptoms effectively.

Interventional study of continuous nursing on knowledge and behavior of stroke patients and caregivers in preventing falls.

article: Interventional study of continuous nursing on knowledge and behavior of stroke patients and caregivers in preventing falls - Minerva Surgery 2022 August;77(4):409-10 - Minerva Medica - Journals

Exploring the experiences of stroke survivors, informal caregivers and healthcare providers in Sierra Leone: a qualitative study protocol

IntroductionStroke is now the second leading cause of adult death in Sub-Saharan Africa. Developed in dialogue with stroke survivors and caregivers in Sierra Leone, this will be the first study...

Self-care interventions in stroke survivor–caregiver dyads: a protocol for systematic review and meta-analysis

IntroductionStroke is known as one of the leading causes of mortality and disability worldwide. Self-care plays a significant role in improving the quality of life, self-efficacy and many other outcomes...

Experiences of stroke patients and the caregiver after discharge from hospital: A literature review

The purpose of this study is to explore the experience of stroke patients and caregivers after discharge from the hospital. A range of databases were searched, including Pubmed, Wiley, and Proquest as well as grey literature, reference lists, and Google Scholar. The review included qualitative primary peer-reviewed research studies that focused on exploring the patients’ and caregivers’ experience in caring for stroke patients after returning from a hospital. Stroke patients and their caregivers experience several problems after discharge from the hospital. Of the seven articles, three themes were obtained, namely health information, support from health workers and role changes. This review shows that many stroke patients and their caregivers are not prepared well for the patients’ activities at home. Improving knowledge and skills for caregivers is essential to help them take care of the patients at home.

Effect of transitional care stroke case management interventions on caregiver outcomes: the MISTT randomized trial

ABSTRACT This study reports on outcomes for 169 caregivers enrolled in the Michigan Stroke Transitions Trial (MISTT), an RCT of social work case management for stroke patients returning home. A mixed-model approach examined the mean change from 7- to 90-days post-discharge with group-by-time interactions for differences between treatment groups. Caregivers reported few life changes or depressive symptoms from caregiving. There was no significant change over time or treatment effects. Negative aspects of stroke caregiving may take longer to develop. Focused caregiver assessment at discharge and a better understanding of how caregiving develops over time may improve the type and timing of support.