Stroke Caregivers Research Articles

The RESCUE problem solving intervention for stroke caregivers: A mixed-methods pilot study.

Stroke caregivers face many challenges after a family member experiences stroke. Because caregivers play such a crucial role in health care, there is a need for more interventions in web-based formats that focus on caregiver psycho-education and skills building. A pilot study was devised to determine the feasibility, acceptability, and value of an active, 4-week telephone and web-based intervention for stroke caregivers. A one-group, pretest-posttest design with a mixed-methods approach was used. Qualitative data supplemented the quantitative findings. Community-dwelling caregivers of stroke patients were recruited from the Veterans Health Administration. Quantitative data were collected pre and postintervention. Semistructured interviews were completed with a subsample of caregivers to capture more detail about the acceptability and value of the intervention. Ninety-three caregivers were recruited; 72 caregivers completed the intervention and 21 withdrew (77% completion rate). From pre- to posttest, caregiver depression (p = .008) and caregiver burden (p = .013) decreased. Problem-solving abilities and health-related quality of life showed no change. Seventy-eight percent of caregivers rated the intervention sessions with the nurses as very helpful or extremely helpful, and 76% reported using the problem-solving strategies a moderate amount to extremely often. Interviews suggest that the intervention was valuable and led to new strategies to relieve stress and prioritize health. The intervention was feasible to implement and acceptable to caregivers. This intervention shows promise for fulfilling a need for more web-based interventions that focus on skills building and psycho-education, but more rigorous testing is needed to determine effectiveness. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

The downward referral experiences of stroke caregivers in the regional medical alliance in China: A phenomenological study.

The downward referral platform in the regional medical alliance has provided more possibilities to follow-up rehabilitation and transitional care for increasing stroke survivors, which also has the most contributions in the rational use of resources and health promotion of stroke survivors. However the downward referral rate is low compared to upward referral. At present, no scholars have explored the downward referral experiences of medical demanders from the perspective of qualitative study, and these experiences may also most truly reflect the influencing factors of their unwillingness to downward referral. Therefore, this study explored the subjective experiences of stroke caregivers who had experienced the downward referral, because stroke attacks often lead to lack of autonomy of patients themselves, making it difficult to complete interviews with them. A descriptive phenomenological study was adopted. A purposive sampling strategy was used to recruit 13 stroke caregivers. Interviews were guided by a semi-structured interview-guide encouraging interviewees to reflect on their experiences with downward referral. Coliazzi’s data analysis process was applied. The analysis of the data revealed 4 themes: coping challenges; disrupted information; gaps in medical and nursing transition, and potential enabling factors. The results of this study showed that the lack of knowledge of medical alliance, non-sharing of medical information and non-homogeneousness of medical quality were identified to be impeding positive attitude towards downward referral and be factors of bad experiences. Of course, the interviewees had positive experiences such as smooth referral and comfortable environment. These may be potential enabling factors to their attitude towards downward referral. The challenges and needs of medical demanders after downward referral are worthy of attention, and these should be solved by corresponding measures to improve the downward referral rate and referral experiences.

Role of virtual modality for stroke caregivers in facilitating stroke survivors and assessing their perceptions in the midst of COVID-19 pandemic

Background: Stroke survivors become either partially or completely dependent on their family members for assistance. Furthermore, the COVID-19 pandemic has created a new set of challenges for caregiving, due to government-imposed lockdowns. In the current crisis, the crucial role of virtual modality in stroke caregiving can no longer be ignored. Therefore, this review aims to report the utilization of virtual modality to facilitate stroke caregivers in delivering care to stroke survivors in this pandemic. Moreover, it will also assess the perceptions of stroke caregivers in managing stroke survivors during pandemic Methods: An electronic search was carried out between 1 December 2019 to 31 March 2022 to explore the role of virtual platforms to assess stroke caregivers’ perceptions and the use of a distant medium in managing stroke survivors’ care in the COVID-19 era by using four electronic data bases that includes PubMed, CINAHL Plus, Science Direct, and Cochrane. Results The COVID-19 pandemic has undoubtedly complicated the stroke caregiver’s life and their ability to deliver care. Therefore, utilizing virtual medium serves as a unique supplemental resource in warranting patient care continuity. The current review provides evidence for the integration of distant modality in facilitating stroke caregivers to manage stroke survivors and it also assesses their perception during pandemic. Conclusion: The current review provides limited but encouraging data that promotes the efficacy of virtual models in healthcare. It was identified that distant healthcare services are suitable and accessible for the provision of care to the community of stroke caregivers during this pandemic.

Prevalence of chronic non-specific low back pain among caregivers of stroke survivors in Kano, Nigeria and factors associated with it: A cross-sectional study.

PurposeLow back pain (LBP) may have a specific or non-specific cause such as abnormal posture or repetitive tasks. For instance, lifting and transferring patients during caregiving for stroke survivors may predispose the caregivers to LBP.ObjectivesThe aim of this study is to determine the prevalence of chronic non-specific LBP and factors associated with it in caregivers of stroke survivors.MethodThe research design used is cross-sectional study design. Participants of the study were caregivers of stroke survivors in Kano, Nigeria who were at least 18 years old. They were included if they had at least one-month experience with caregiving for at least 1 h per day. Presence of LBP and level of disability were assessed using participants' self-report and Rolland Morris Low Back Pain Disability Questionnaire respectively. The data collected was analyzed using descriptive, Chi-square statistics and Binary Logistics Regression.ResultThree hundred caregivers with mean age, 33.24 ± 10.32 years in which 207 and 93 were males and females respectively, participated in the study. The results showed that, there was a high prevalence (64.7%) of LBP among the caregivers. The prevalence was significantly associated with gender (p < 0.001), age (p = 0.029), occupation (p < 0.001) and duration of caregiving (p < 0.001) of the study participants. In addition, the result of the regression model showed that, being a female (p = 0.001), a civil servant (p = 0.031), a trader (p = 0.013), and a complete caregiver (0.001); and caregiving for a duration of 5 h or more per day (p = 0.024) are significant predictors of having LBP. Similarly, level of disability due to the presence of LBP among the study participants was significantly associated with gender (p < 0.001), occupation (p < 0.001), duration of caregiving (p = 0.025), and the nature of the caregiving (p < 0.001).ConclusionInformal caregiving for stroke survivors may result in developing chronic non-specific LBP, especially among females, Civil servants, traders, complete caregivers and those with long duration of caregiving. This can add an additional burden on the family in terms of cost of care, result in reduced quality of caregiving and cause psychological stress. Thus, it is important the health of the caregivers of stroke survivors is considered during stroke rehabilitation.

Influence of psychological responses of caregiving on the perceived health of family caregivers to acute stroke survivors.

Family caregivers provide round-the-clock care to their family members who had a stroke. The detrimental effects of caregiving on caregiver’s health would lead to the abandonment of caregiver role and institutionalization of stroke survivors. This study aims to determine the factors associated with the perceived health status of family caregivers to stroke survivors. This study conducted a secondary analysis of the baseline data of 142 family caregivers of stroke survivors nested within a longitudinal randomized controlled trial. Potential factors were identified according to the Pittsburgh Mind-Body Center model and were analyzed with hierarchical multiple regression models. The results indicated that stroke caregivers exhibited comparable perceived physical health with general population but poorer perceived mental health. Severity of depressive symptoms (β = −0.37, P < .001) remained the strongest and most significant factor associated with perceived mental health, followed by confidence in problem-solving (β = −0.21, P < .05). Moreover, caregiving competence (β = 0.29, P < .001) was the sole significant psychological factor associated with perceived physical health. Caregiving competence, problem-solving abilities, and severity of depressive symptoms are significant modifiable correlates of the perceived health of caregivers. Intervention for improving these psychological responses of caregivers is suggested incorporated in stroke rehabilitation programs.

Relationships between care burden, resilience, and depressive symptoms among the main family caregivers of stroke patients: A cross-sectional study.

ObjectivesThis study aims to explore the potential mediating role of resilience between care burden and depressive symptoms in family caregivers of stroke patients.MethodsA cross-sectional study was conducted with a convenience sample involving 245 main family caregivers of stroke patients recruited from the neurology department of a Tertiary A hospital in China. Mediation analyses were conducted using the PROCESS macro (Model 4) for SPSS, applying the Bootstrap analysis with 5,000 samples and a 95% confidence interval.ResultsThe results showed that with constant hemiplegia side, Barthel Index, education level, monthly income, care time per day, and living with patients in regression equations, the resilience partially mediated the correlation of care burden and depressive symptoms with a mediation effect ratio of 26.32%.ConclusionsResilience plays a mediating role in the correlation between care burden and depressive symptoms.ImpactThe findings indicated a protective effect of resilience in alleviating the negative influences of care burden on depressive symptoms, suggesting that resilience-training intervention may be developed to mitigate depressive symptoms of the main family caregivers of stroke patients.

Addressing Uncertainty in Informal Familial Caregivers of Stroke Survivors: A Systematic Meta-Ethnography.

Background: Informal familial caregivers of stroke survivors experience uncertainty that begins at the time of the stroke event and continues into home-based care. The uncertainty faced by caregivers contributes to poor mental and physical health outcomes. Objective: This review details the factors associated with, impacts of, and coping skills used to manage uncertainty across the caregiving trajectory. By defining uncertainty reduction and tolerance recommendations, this review also builds upon the Stroke Caregiver Readiness Model to improve preparedness following the stroke event. Methods: A meta-ethnographic review was systematically conducted on thirteen qualitative studies with 218 participants from four countries. The Critical Appraisal Skills Programme (CASP) was used to assess study quality. Results: Following the stroke event, caregivers reported a lack of knowing (e.g., about the cause of the stroke event and survivor prognoses) as contributing to post-stroke uncertainty. As a result of this uncertainty, caregivers expressed concerns about their abilities to navigate caregiving responsibilities and how to plan for the future. Longer-term concerns (e.g., managing finances) and feelings of hopelessness occurred after discharge. Still, caregivers identified strategies to manage uncertainty. Caregiver coping skills included present-focused thinking, gratitude, faith, humor, and social support. Conclusions: The uncertainty faced by informal familial caregivers of stroke survivors is pervasive and changes across time. Uncertainty reduction and tolerance interventions can be used to build upon caregiver strengths and promote preparedness across the caregiving trajectory.

Disagreement about perceptions of patient disability between the stroke patient and caregiver: a cross sectional study exploring the association to patient and caregiver quality of life

Objectives This study explored the association of disagreement in the perception of patient disability between patients and family caregivers with physical and psychological quality of life (QOL) in both parties. Methods A cross-sectional analysis of data collected from male stroke patients and family caregivers was conducted. Physical and psychological QOL in patients and caregivers were measured using the WHOQOL BREF. Perceptions of patient disability were measured using the 12-item WHO Disability Assessment Schedule 2.0 (DAS). Using DAS scores reported independently by patients and caregivers, dyads were categorized into one of four groups representing agreement or disagreement about patient disability. Generalized estimating equations were used to examine the associations between WHOQOL scores in patients and caregivers and these four groups. Results Among 56 dyads enrolled, approximately 52% were categorized into ‘agreement’ groups and 48% were categorized into ‘disagreement’ groups. The disagreement in perception about patient disability were significantly associated with poor patient physical QOL. However, the disagreement in perception were not significantly associated with caregiver QOL. Conclusion Findings suggest the association of disagreement with QOL differs between patients and caregivers. Further research is needed to carefully appraise the relationship and interaction between patient and caregiver.

Coaching-Based Teleoccupational Guidance for Home-Based Stroke Survivors and Their Family Caregivers: Study Protocol for a Superior Randomized Controlled Trial

Background Home-based rehabilitation has been shown to be useful for stroke survivors to participate in daily life activities and return to their families. However, many home-based stroke survivors face challenges in the lack of professional guidance, rational training plans, and insufficient motivation, which will affect their rehabilitation outcomes to varying degrees. Though occupational therapy and coaching are widely recommended for stroke rehabilitation, studies that combine these two interventions via telerehabilitation in home-based rehabilitation are limited. Hence, this study will explore whether coaching-based teleoccupational guidance (CTG) will help stroke survivors and caregivers obtain satisfactory outcomes. Methods This single-blind (assessor), two-arm parallel superior randomised controlled trial will be conducted in the Hebei General Hospital, Shijiazhuang, China. Ninety-two participant dyads in home-based rehabilitation will be recruited and randomised to either CTG (intervention group) or a standard telerehabilitation group (control group). Participant dyads in the intervention group will follow a 6-step circle procedure and receive 12 teleoccupational coaching sessions over 3 months via WeChat. Data will be collected at baseline, after the intervention (3 months), and follow-up (6 months). The Reintegration to Normal Living Index will be the primary outcome to assess the participation of stroke survivors. Secondary outcomes will not only involve an observation of changes in activities of daily living, intrinsic motivation, motor function, and quality of life of stroke survivors but also will focus on the caregivers' perceived benefit and care burden. Discussion. This trial will assess the effects of CTG compared with standard telerehabilitation. We believe that the results of this study will add to the understanding of occupational therapy for stroke survivors in home-based rehabilitation and provide a reference for developing health policy and facilitating other chronic management. Trial Registration Number. The Chinese Clinical Trial Registry ChiCTR2200061107.

Piloting GETCare: A Goal-Based Education and Skills Training Program for Caregivers.

Many individuals with stroke require informal caregiver support. These caregivers are often unprepared and overwhelmed. This study assesses the feasibility and acceptability of GETCare, a remote Goal-based Education and skills Training program for Caregivers caring for an individual poststroke. Single-arm mixed-methods pilot trial was performed. The GETCare program is a 5-week remote, individually administered program for informal stroke caregivers that includes education, skills training, guided goal setting, and resource recommendations. Quantitative data were analyzed using descriptive statistics and qualitative data via a deductive approach. Twenty-eight caregivers were recruited with 18 caregivers completing the program. These 18 caregivers reported high satisfaction, and over 75% reported program content was at least quite helpful. Caregivers suggested that the length of the program was appropriate, indicated that weekly check-ins were helpful, and supported this program for informal caregivers across the time trajectory poststroke. Eight of 10 caregivers who dropped out of the program were caring for someone 0-4 months poststroke. Caregivers positively received the GETCare program, which was uniquely structured to provide resources and skills for this high-need population. This pilot study provides valuable insight for future remote interventions poststroke. Results provide foundational knowledge in how to better support caregivers through guided goal setting and individualized education.

A WeChat-based caregiver education program improves satisfaction of stroke patients and caregivers, also alleviates poststroke cognitive impairment and depression: A randomized, controlled study.

Caregiver education program has been applied to stroke patients, while its effect on mental health in stroke patients is still obscure. This study aimed to assess the impact of the WeChat-based caregiver education (WBCE) program on cognition, anxiety, and depression in stroke patients.Totally, 170 patients with ischemic stroke were included. They were randomized at a 1:1 ratio to the WBCE group (N = 86) and control care (CC) group (N = 84), and their caregivers received WBCE or CC for 12 months, respectively.Mini-mental state examination (MMSE) score was increased in the WBCE group compared with that in the CC group at the 9th month (M9) (27.2 ± 1.9 vs 26.6 ± 1.6, P = 0.017) and M12 (27.1 ± 1.8 vs 26.5 ± 1.5, P = 0.015), while cognitive impairment rate was decreased in WBCE group compared with that in CC group at 12th month (M12) (30.2% vs 45.2%, P=0.043). In the meantime, the Hospital Anxiety and Depression Scale (HADS) for Anxiety score (6.5 ± 3.1 vs 7.5 ± 2.8, P = 0.020), HADS for depression score (6.7 ± 3.1 vs 7.7 ± 3.3, P = 0.040) and depression rate (33.7% vs 48.8%, P = 0.046) in WBCE group were reduced compared with those in CC group at M12. Besides, an elevation in the satisfaction score of patients at M12 (8.0 ± 1.2 vs 7.4 ± 1.2, P = 0.002) and that of caregivers at 6th months (M6) (6.6 ± 1.1 vs 6.2 ± 1.3, P = 0.038) and M12 (7.2 ± 1.1 vs 6.8 ± 1.4, P=0.042) were found in WBCE group compared with CC group.WBCE program not only improves the satisfaction of stroke patients and caregivers but also attenuates cognitive impairment and depression in stroke patients.

Caregiver Decision-Making Process Analysis: A Grounded Theory Approach

Abstract Date Presented 04/01/2022 Understanding the process of stroke caregiver decision making can best support the caregiver role to reduce burden. Results from a secondary analysis of interviews with stroke caregivers about decisions made were obtained through a grounded theory approach to uncover underlying mechanisms associated with the decision-making process. Seven categories were identified that can influence how information and training are passed on to caregivers to optimize outcomes. Primary Author and Speaker: Sonia Lawson

How do stroke survivors and their caregivers manage post-stroke fatigue? A qualitative study

Objectives The primary objective was to gain insight into the lived experiences of using day-to-day strategies to manage post-stroke fatigue. Design Qualitative, descriptive study. Setting Community telephone interviews. Participants A purposive sample of 20 stroke survivors with current, or previous, post-stroke fatigue, and 8 caregivers, who provided informal care or support, were recruited. Main Measures Semi-structured telephone interviews were undertaken. Data were analysed using a framework approach. Results Most participants had found their own ways of coping and their personal strategies included acceptance of having fatigue; ‘pacing’ (spreading activities out and interspersing with rest periods); keeping a diary in order to plan activities and to identify ‘trigger’ activities which induced fatigue; talking to (and educating) others about having fatigue; using relaxation; and accessing professional advice and support. The burden placed on caregivers was considerable and they often had to oversee the post-stroke fatigue management strategies used. Conclusions Post-stroke fatigue is managed in different ways and there was not one particular strategy that seemed effective for everyone. Most people in our study had had to devise their own ways of coping practically. Given the scale of this problem, which profoundly impacts the lives of both stroke survivors and caregivers, the management of post-stroke fatigue merits more attention and evaluation. However, this must be directly informed by those with lived experience.

Familial caregiving following stroke: findings from the comprehensive post-acute stroke services (COMPASS) pragmatic cluster-randomized transitional care study

ABSTRACT Background Stroke patients discharged home often require prolonged assistance from caregivers. Little is known about the real-world effectiveness of a comprehensive stroke transitional care intervention on relieving caregiver strain. Objectives To describe the effect of the COMPASS transitional care (COMPASS-TC) intervention on caregiver strain and characterize the types, duration, and intensity of caregiving. Methods The cluster-randomized COMPASS pragmatic trial evaluated the effectiveness of COMPASS-TC versus usual care with patients with mild stroke and TIA at 40 hospitals in North Carolina, USA. Of 5882 patients enrolled, 4208 (71%) identified a familial caregiver. A follow-up Caregiver Questionnaire, including the Modified Caregiver Strain Index, was administered at approximately three months post-discharge. Demographics and frequency, duration, and intensity of caregiving were compared between groups. Results 1228 caregivers (29%) completed the questionnaire. Completion was positively associated with older patient age, white race, and spousal relationship. One-third of the caregivers provided ≥30 hours of care per week and 889 (79%) provided care ≥9 weeks. Average standardized caregiver strain was 21.9 (0–100), increasing with stroke severity and comorbidity burden. Women caregivers reported higher strain than men. Treatment allocation was not associated with caregiver strain. Conclusions This sample of mild stroke and TIA survivors received significant assistance from familial caregivers. However, caregiver strain was relatively low. Findings support the importance of familial caregiving in stroke, the continued disproportionate burden on women within the family, and the need for future research on caregiver support.

Feasibility of an Online Langerian Mindfulness Program for Stroke Survivors and Caregivers.

Mindfulness is promising for individuals with neurological disorders and their caregivers to improve psychological well-being. The potential application of a Langerian mindfulness intervention, focused on attention to variability, however, is still unknown. The objective of the study was to determine the feasibility (usability, satisfaction, and potential effectiveness on psychological well-being) of an online mindfulness intervention for stroke survivors and caregivers. Using mixed methods, 11 stroke survivors and three caregivers participated in a 3-week, online, Langerian mindfulness intervention. A semi-structured interview assessed the intervention's usability and gathered feedback. Self-reported measures about psychological well-being were documented remotely 3 times (preintervention, postintervention, and 1-month follow-up). Qualitatively, participants were highly satisfied with the intervention and reported subjective benefits, but the usability of the online platform was poor. None of the self-reported measures changed over time. This study provided evidence of feasibility of an online Langerian mindfulness intervention in a new population: stroke survivors and caregivers.

Linkage of Optimism With Depressive Symptoms Among the Stroke Survivor and Caregiver Dyads at 2 Years Post Stroke: Dyadic Mediation Approach.

Depressive symptoms are substantial among stroke survivors and their caregivers in poststroke management. Optimism and social support are known to protect against depressive symptoms. However, little is known about how optimism and social support contribute to depressive symptoms among stroke survivor-caregiver dyads. The study's purpose was to examine actor and partner effects of optimism on depressive symptoms through perceived social support among stroke survivors and caregiver dyads in the chronic stage of rehabilitation. Stroke survivors and caregivers (N = 105 dyads) completed the survey at 2 years of follow-up after the first stroke. Depressive symptoms, optimism, and perceived social support were assessed using the Center for Epidemiologic Studies-Depression, the Life Orientation Test, and the Interpersonal Support Evaluation List. The Actor-Partner Interdependence Model Extended to Mediation analysis was used to test the indirect effect of optimism on depressive symptoms through perceived social support. Higher optimism was significantly associated with lower depressive symptoms for caregivers (direct actor effect, -0.6844; 95% confidence interval [CI], -0.9844 to -0.3844) and stroke survivors (direct partner effect, -0.4189; 95% CI, -0.0789 to -0.0889). Perceived social support availability significantly mediated the association between optimism and depressive symptoms for stroke survivors (indirect effect, -0.1957; 95% CI, -0.3923 to -0.0670). Caregiver perceived social support availability was also a significant mediator between caregivers' optimism and stroke survivors' depressive symptoms (indirect effect, 0.1658; 95% CI, 0.0559-0.3128). Intervention improving dyad members' optimism and social support would be beneficial to improve depressive symptoms of the stroke survivors and caregivers in chronic stroke management.

Development, Usability Testing, and Promotion of the English- and Spanish-language RESCUE Stroke Caregiver Websites

ABSTRACT Background Caregivers of stroke survivors need trusted information on stroke prevention, rehabilitation, and self-care. Purpose Develop and evaluate the English and Spanish-language RESCUE stroke caregiver websites and conduct a promotional campaign to enhance their reach. Methods We developed websites by partnering with organizations and using health communication guidelines for consumer-oriented, age-appropriate, and culturally sensitive materials. Healthcare provider focus groups and caregiver interviews were conducted to obtain feedback. Websites were refined and assessed for usability through “think aloud” testing and surveys. We implemented a multi-faceted promotional campaign and measured website visits. Results Providers (N = 32) and caregivers (N = 47) responded positively to the websites, describing them as comprehensive and appropriate. Usability testing indicated the websites were appealing, informative, and organized. Caregivers with minimal computer skills had difficulty navigating the websites. The websites received 218,529 visits over 2 years. Promotional activities corresponded with increases in website visits. Discussion Involving end-users and collaborating with partners enhances the accessibility and relevance of online health resources. Multi-faceted promotional efforts and key stakeholder partnerships are required to enhance and sustain the reach of online caregiving resources. Translation to Health Education Practice: The RESCUE websites are comprehensive public sources of evidence-based materials to support stroke patients and their caregivers.

Factors impacting the access and use of formal health and social services by caregivers of stroke survivors: an interpretive description study

BackgroundEvidence has shown that family and friend caregivers of stroke survivors are significantly and negatively impacted by caregiving. The negative effects of caregiving may persist over time suggesting that caregivers might benefit from ongoing engagement with supportive services. However, little is known about caregivers’ use of formally funded health and social services, or the factors influencing their access to and use of these services. The aim of this study is to increase understanding of the factors that influence stroke caregivers’ access and use of formal health and social services, from the perspective of stroke caregivers and healthcare providers.MethodsA qualitative study was conducted with stroke caregivers and health providers in Ontario, Canada using interpretive description. In-depth interviews were conducted with caregivers of survivors who experienced a stroke between six months to five years previous and healthcare providers who support caregivers and stroke survivors. All participants provided written informed consent. Interview data were analyzed using constant comparison to identify codes and develop key thematic constructs.ResultsA total of 40 interviews were conducted with 22 stroke caregivers at an average 30-months post-stroke and 18 health providers. Factors that influenced stroke caregivers’ access and use of services included: finances and transportation; challenges caregivers faced in caring for their health; trust that they could leave their family member and trust in health providers; limited information pertaining to services and a lack of suitable services; and the response of their social networks to their caregiving situation.ConclusionStroke caregivers experience significant challenges in accessing and using formal health and social services. These challenges could be addressed by increasing availability of subsidized community-based supports such as respite and counselling tailored to meet the ongoing needs of caregivers. Systemic change is needed by the health system that readily includes and supports caregivers throughout the stroke recovery continuum, particularly in the community setting.

Psychological Burden in Stroke Survivors and Caregivers Dyads at the Rehabilitation Center of Kinshasa (Democratic Republic of Congo): A Cross-Sectional Study

IntroductionStroke is a major cause of burden which can lead to anxiety and depressive disorders in stroke patients and their caregivers. This study aimed to assess the burden of depression and anxiety and covariates as well as its association with functional disability level among stroke survivors and caregivers dyads. MethodsThis cross-sectional study assessed for anxiety and depressive symptoms, and perceived burden among survivors of stroke and their caregivers in the rehabilitation center of Kinshasa; using the Hospital Anxiety and Depression Scale to identify participants with anxiety and depression; the Zarit Burden Inventory to assess the burden of depression and anxiety; and the modified Rankin scale used to assess functional outcome or level of disability. ResultsEight in ten caregivers of stroke survivors perceived the burden, which took more expression of depression than anxiety, whereas three in ten stroke survivors had a burden expressed by symptoms consistent with depressive and anxiety disorders. Being married increases the risk of perceiving the burden among stroke survivors. We found a positive association between high level of burden and depression and anxiety among caretakers of stroke survivors. Moreover, our findings did not reveal a statistical association between the burden and level of dependence evaluated based on the severity of disability. ConclusionsThe psychological burden is higher among caregivers than stroke survivors. Specialized programs targeted the psychological distress, its association with anxiety and depressive symptoms; and the functional disability level of stroke survivors should be integrated into the rehabilitation center of patients with disabled illnesses. Our findings warrant further studies to test the impact of reducing psychological burden on functional disability.

Impact of Stroke Survivors' Physical Disability on the Presence of Caregiver Burden: A Systematic Review.

BACKGROUND: Caregiver burden associated with caring for stroke survivors remains a prominent issue in nursing. With stroke being a leading cause of disability worldwide, it is essential that the impact of the stroke survivor's physical disability be analyzed so interventions can be developed to relieve related caregiver burden. The purpose of this systematic review is to review the existing nursing and allied-health literature aimed at the impact of stroke survivors' physical disability on the presence of caregiver burden. METHODS: A systematic review of the CINAHL® and PubMed databases was conducted using Preferred Reporting Items for Systematic Reviews and Meta-analyses guidelines (searched on June 16, 2021). Study inclusion criteria for this review were as follows: (1) publication in the last 5 years, (2) examined the impact of stroke survivors' physical disability on caregiver burden, (3) caregiver-survivor dyads 18 years or older, (4) published in English, and (5) longitudinal study designs (an exception for reports that present findings not demonstrated in longitudinal studies). Data extracted from articles included sample characteristics, study design, instruments, analyses, and results. RESULTS: A total of 7 studies met the inclusion criteria and were synthesized for use in this systematic review. These studies implemented a variety of instruments to assess for both physical disability in the stroke patient and caregiver burden. A positive correlation between physical disability and caregiver burden was universally reported. CONCLUSION: Further nursing research is warranted to explore the aspects of physical disability that contribute to caregiver burden and to develop interventions to improve the physical functioning of stroke survivors, include social determinants of health, and specifically address the greatest contributors to caregiver burden.