Informal Caregivers Of Stroke Survivors Research Articles

Telehealth in Informal Caregivers of Stroke Survivors: A Systematic Review.

Background: There has been an increase in people with disabilities who require continuous care, which often falls to informal carers (ICs). Stroke is one of the conditions where ICs are most needed. Therefore, it is necessary for ICs to improve their caregiving skills and self-care capacity. Telehealth (TH) can facilitate them. The aim of this systematic review is to summarize the evidence of the effects of interventions on ICs of stroke patients. Methods: The search was conducted in Pubmed, Scopus, Web of Science, CINALH, Psychology and Behavioral Sciences Collection, and APA PsycInfo. Key search terms included "stroke", "informal caregiver" and "telemedicine". Only randomised clinical trials were included. Results: A total of 2031 articles were found in the databases, 476 were screened and 19 clinical trials met the eligibility criteria. Different TH programmes have evaluated many outcomes related to physical and emotional health. The TH tools included phone, videophone, web-based interventions, and social media. The most investigated outcome was depression; although contradictory results were found, the TH may have helped to prevent an increase in depressive symptoms. There were inconsistent results on the caregiving burden and the preparedness of the IC. However, TH has positive effects on the health of the ICs, reducing the number of unhealthy days, anxiety, task difficulty perception, and improving psychological health. Conclusions: TH may be a useful tool to improve the abilities and health of ICs of SS. No adverse effects have been reported. More quality studies evaluating the effects of telemedicine on the ICs of stroke survivors, as well as the most appropriate doses, are needed.

Abstract WP29: Investigating Needs, Concerns, And Quality Of Life In Working Age Informal Caregivers Of Stroke Survivors

Informal caregivers are an essential component of stroke survivor care, yet they are at risk for poorer outcomes due to their own unmet needs, feelings of isolation and abandonment, and lack of personal resources. While a substantial body of research literature on stroke caregiving exists, there is a notable research gap related to the specific needs of working age (18-64) stroke caregivers. The purpose of this study was to characterize unmet needs and concerns, caregiver self-efficacy, social support, and quality of life of working age caregivers of stroke survivors. A cross-sectional descriptive design was used. Participants (N=103) included family or friends that provided unpaid care for a stroke survivor outside of healthcare institutions recruited through national organizations, local support groups, and Facebook ads. Participants completed an online survey comprised of questions exploring sociodemographic characteristics, stroke survivor functional independence, perceived social support, and caregiver needs and concerns, strain, self-efficacy, and quality of life. Descriptive statistics and linear regression analysis were performed using the IBM Statistical Program for Social Sciences (SPSS) v28 software package. In individual regression models, stroke survivor functional independence, caregiver self-efficacy, perceived social support, race, gender, relationship with the stroke survivor, transportation, and responsibilities outside of the caregiving role were predictive of caregiver quality of life. In multiple regression models, stroke survivor functional independence, caregiver self-efficacy, race and gender were statistically significant predictors of caregiver quality of life. In conclusion, this study adds to the current literature by exploring unmet needs and concerns of working age caregivers of stroke survivors and relationships between caregiver quality of life and sociodemographic characteristics, stroke survivor functional independence, perceived social support, and caregiver needs and concerns, strain, and self-efficacy. A greater understanding of these needs can inform intervention designs to meet the unique needs of a diverse population of informal caregivers of stroke survivors.

Musculoskeletal Pain and Associated Factors Among Informal Caregivers of Stroke Survivors in Northwestern Nigeria

Background: Pain is an important clinical factor that limits movement and functions. Informal caregivers of stroke survivors are primarily involved in providing care and assistance and may face musculoskeletal problems. Objectives: This study was conducted to determine the prevalence of musculoskeletal pain (MSP) and associated factors among informal caregivers of stroke survivors in northwestern Nigeria. Methods: This was a hospital-based cross-sectional study performed among 218 informal caregivers of stroke survivors. Data on sociodemographic characteristics, nature of caregiving, and duration of caregiving were collected using researcher-designed data forms. A 12-month prevalence of MSP in different body regions was obtained using the Nordic Musculoskeletal Questionnaire. Descriptive and inferential statistics were used to analyze the data at an alpha level of 0.05. Results: The majority of the caregivers were females (60.6%) within the age range of 18 - 27 years old (50.9%) and engaged in full-time caregiving (63.8%). The overall prevalence of MSP among the caregivers was 16.5%. The most common MSP was low back pain (28%) and was found to be associated with age, gender, body mass index, marital status, educational level, occupational status, duration of caregiving, and nature of caregiving (all P

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.

A scoping review on studies about the quality of life of informal caregivers of stroke survivors.

To assess the available evidence regarding the quality of life (QoL) of informal caregivers of stroke survivors, by identifying the instruments used to assess QoL, and its associated characteristics. A scoping review was performed, following PRISMA-ScR guidelines. The electronic databases PubMed, ISI Web of Science, PsycINFO, and SciELO were searched for empirical, peer-reviewed, original, and full-length studies on the characteristics influencing the QoL of informal caregivers of stroke survivors. Eligibility and data extraction were conducted by two independent researchers. The main quantitative findings were synthesized, and qualitative data were explored by thematic content analysis. The included studies, 56 quantitative, 1 qualitative, and 1 mixed methods, were published between 1999 and 2020. A high heterogeneity was found regarding the assessment of QoL, and the characteristics influencing it. Only one study used an instrument specifically designed to assess the stroke caregivers' QoL. The QoL of informal caregivers was inversely associated with physical and mental health of stroke survivors and caregivers, while stroke characteristics with a better prognosis, caregivers' positive relationships, and a more supportive and participative social context were positively associated to QoL. There is a need for standardizing the assessment of the QoL of informal caregivers of stroke survivors, as well as for investing in cross-country/cultural studies with robust mixed methods designs to allow a deeper understanding of the experiences of caregivers. Further research, policies, and practices should consider the diversity and complexity of the characteristics influencing QoL, to empower informal caregivers and improve their QoL.

1289Decline in duration, satisfaction and sleep quality among informal caregivers of stroke survivors, 18-months post-stroke

Abstract Background Data on stroke caregivers’ sleep is scarce. We aimed to assess changes in duration, satisfaction and sleep quality among informal caregivers of stroke survivors. Methods Informal caregivers (n = 126) of stroke survivors hospitalized between September 2018 and August 2019 in the 12 Stroke Units of the North of Portugal were invited to participate in the study, 18 months’ post-stroke. Sociodemographic and sleep characteristics (duration, satisfaction and quality) were collected through structured questionnaires. Odds ratios and 95% confidence intervals (95%CI) were estimated through logistic regression, adjusted for age and sex. Answers to open-ended questions were synthetized using content analysis. Results Due to care provision, informal caregivers reported sleeping, on average (SD), significantly less hours (7.0 (1.7) vs. 6.4 (1.8); p &amp;lt; 0.001). Since its beginning, caregivers’ satisfaction with their sleep decreased approximately 30%. Changes in sleep quality, namely difficulties in falling asleep and constant interruptions during sleep, were reported by almost 70% of caregivers. Only 6.4% described the prescription of medication to sleep after beginning care provision. Participants who returned to work (adjusted OR = 0.34; 95%CI:0.16-0.76) and with a monthly income above 1000€ (adjusted OR = 0.29; 95%CI:0.13-0.66) were less likely to report changes in sleep quality. Conclusions A decline in duration, satisfaction and sleep quality of informal caregivers of stroke survivors, 18 months’ post-stroke, was observed. Changes in sleep quality revealed socioeconomic inequalities, highlighting the need to prevent adverse health outcomes related to sleep disturbance. Key messages Sleep health dimensions of stroke caregivers should be considered an additional dimension of the post-stroke care services.

A Validation Study of the Revised Caregiving Burden Instrument in Korean Family Caregivers of Stroke Survivors.

Background: The purpose of the present study was to examine the internal consistency reliability and construct validity of the Caregiving Burden Instrument in Korean informal caregivers of stroke survivors. Methods: A descriptive survey design was used with a convenience sample of 208 primary caregivers of stroke survivors. Internal consistency reliability was assessed using Cronbach’s alpha coefficients. Construct validity was assessed using exploratory and known-group analysis. Results: Each subscale and the total scale demonstrated satisfactory internal consistency reliability. Exploratory factor analysis identified five factors: family support, patient’s dependency, physical health, financial burden, and psychological health, which together accounted for 62.7% of the variance. Known-group analysis indicated that caregivers with more than one year of experience reported significantly higher mean scores for the total burden score and its five subscales compared to those with less than one year. Conclusions: This 23-item instrument demonstrates good internal consistency reliability and construct validity. The tool can be used to effectively assess burden in caregivers of stroke survivors and the data obtained can form the basis for the development of family interventions.

Interventions for Informal Caregivers of Stroke Survivors: Is There Racial and Ethnic Representation in Stroke Caregiver Studies?

The specific aims of this scoping review of the literature are to (1) map the current scope of literature regarding nonpharmacological interventions for informal stroke caregivers and (2) explore the degree to which racial/ethnic minority groups were represented in nonpharmacological interventions for stroke caregivers in the United States. Arksey and O'Malley's methodological framework was used to conduct this scoping review. The framework entails formulating research questions, developing criteria for selecting relevant studies, charting the data, and synthesizing results. The scoping review yielded 11 studies that varied in intervention design, methods of implementation, and outcome measurements. The review indicated that racial and ethnic minorities were less likely to be represented in nonpharmacological intervention studies for stroke caregivers. Currently, there is sparse research that focuses on interventions with family caregivers of varying racial/ethnic groups in the United States.

Caregiver Burden and Associated Factors Among Informal Caregivers of Stroke Survivors.

Informal caregiving of stroke survivors often begins with intensity compared with the linear caregiving trajectories in progressive conditions. Informal caregivers of stroke survivors are often inadequately prepared for their caregiving role, which can have detrimental effects on their well-being. A greater depth of understanding about caregiving burden is needed to identify caregivers in most need of intervention. The purpose of this study was to examine caregiver burden and associated factors among a cohort of informal caregivers of stroke survivors. A cross-sectional study of 88 informal caregivers of stroke survivors was completed. Caregiver burden was determined with the Zarit Burden Interview, caregiver depressive symptoms were measured with the Patient Health Questionnaire-9, and stroke survivor functional disability was assessed with the Barthel Index. Ordinal logistic regression was used to identify independent factors associated with caregiver burden. Forty-three informal caregivers (49%) reported minimal or no caregiver burden, 30 (34%) reported mild to moderate caregiver burden, and 15 (17%) reported moderate to severe caregiver burden. Stroke survivor functional disability was associated with informal caregiver burden (P = .0387). The odds of having mild to moderate caregiver burden were 3.7 times higher for informal caregivers of stroke survivors with moderate to severe functional disability than for caregivers of stroke survivors with no functional disability. The presence of caregiver depressive symptoms was highly correlated with caregiver burden (P < .001). Caregivers of stroke survivors with functional disabilities and caregivers experiencing depressive symptoms may have severer caregiver burden. Trials of interventions aimed at decreasing informal caregiver burden should consider the potential impact of stroke survivors' functional disability and the presence of depressive symptoms.

Influence of Spiritual Coping and Social Support on the Mental Health and Quality of Life of the Saudi Informal Caregivers of Patients with Stroke.

The research explored the influence of spiritual coping and social support on mental health and quality of life (QOL) of informal caregivers of stroke survivors in Saudi Arabia. The respondents were frequently using religious coping strategies than existential coping strategies. The respondents received higher support from significant others and lowest support from friends. The majority of the respondents had mild to moderate depression, while more than one-third had mild to severe anxiety. Psychological health received the highest QOL, while physical health receivedthe poorestQOL. Spiritual coping and social support significantly influenced the informal caregivers' mental health and QOL.

Supported cognitive-behavioural therapy self-help versus treatment-as-usual for depressed informal caregivers of stroke survivors (CEDArS): feasibility randomised controlled trial

Abstract Demands placed on informal caregivers can result in an increased likelihood of experiencing common mental health difficulties that may affect their ability to undertake the caring role. Currently, however, few evidence-based interventions have been specifically developed for informal caregivers and available interventions are difficult to access. The Improving Access to Psychological Therapies (IAPT) programme aims to improve access to evidence-based psychological therapies for all groups and may therefore present an opportunity to meet informal caregiver needs. Located within the MRC Complex Intervention Framework, a Phase II feasibility randomised controlled trial (RCT) examines key methodological, procedural and clinical uncertainties associated with running a definitive Phase III RCT of an adapted written cognitive behavioural therapy (CBT) self-help intervention for informal caregivers of stroke survivors. Recruitment was low despite different recruitment strategies being adopted, highlighting significant challenges moving towards a Phase III RCT until resolved. Difficulties with study recruitment may reflect wider challenges engaging informal caregivers in psychological interventions and may have implications for IAPT services seeking to improve access for this group. Further attempts to develop a successful recruitment protocol to progress to a Phase III RCT examining effectiveness of the adapted CBT self-help intervention should be encouraged. Key learning aims After reading this article, readers should be able to: (1) Consider key feasibility issues with regard to recruitment and attrition when running a randomised controlled trial of an adapted written cognitive behavioural therapy (CBT) self-help intervention for informal caregivers of stroke survivors. (2) Understand potential barriers experienced by an informal caregiving population to accessing psychological interventions. (3) Appreciate implications for clinical practice to enhance access to IAPT services and low-intensity CBT working with an informal caregiver population.

Informal caregivers' well-being and care recipients' quality of life and community reintegration - findings from a stroke survivor sample.

Stroke is highly debilitating and requires long-term care. Informal caregivers of stroke survivors play important roles in stroke rehabilitation. Caring for stroke survivors can negatively affect the caregivers' well-being and may adversely impact on their caregiving quality and subsequently on stroke survivors' well-being. There seems to be a dearth of research on the relationships between caregivers' and stroke survivors' well-being. This study was designed to determine the relationships among informal caregivers' burden and quality of life (QOL) and stroke survivors' QOL and community reintegration. This ethically certified cross-sectional survey involved 82 stroke survivors (mean age=60.48±11.13years) and their 82 primary caregivers (mean age=36.13±13.69years) consecutively recruited from seven conveniently sampled tertiary hospitals in Nigeria. Caregivers Strain Index, Igbo-culture adapted Maleka Stroke Community Reintegration Measure and Short-Form 36-item Health Survey questionnaires were used to assess the caregivers' burden, survivors' community reintegration and QOL (of survivors and caregivers), respectively. Data were analysed using descriptive statistics, Spearman rank, Mann-Whitney U and Kruskal-Wallis tests at alpha level of 0.05. The mean stroke survivors' community reintegration and QOL were 34.05±21.54% and 34.93±16±49%, respectively. The mean caregivers' QOL and burden scores were 74.49±12.61% and 9.13±3.18, respectively. About 80.5% of the caregivers experienced significant burden. Stroke survivors' QOL and community reintegration, and caregivers' QOL and burden significantly correlated with one another (p<0.05). Poststroke duration, survivor-caregiver cohabitation duration, survivors' community-dwelling duration and daily care-giving hours significantly correlated with each of stroke survivors' community reintegration and QOL, and caregivers' burden and QOL (p<0.05). Stroke survivors' community reintegration and QOL were poor while caregivers' had moderate QOL and high prevalence of significant burden. Significant correlations exist between caregivers' well-being and stroke survivors' QOL and community reintegration. Interventions targeted at reducing caregivers' burden may help improve both caregivers and survivors' well-being.

Abstract WP239: Caregiver Burden Among Informal Caregivers of Stroke Survivors

Background and Purpose: Caregiver burden is commonly encountered in chronic disease management. Caregiver burden among informal caregivers of stroke survivors has potential to impact patient outcomes. We sought to assess the degree of caregiver burden and related factors among informal caregivers of patients followed in our Stroke Transitions Education and Prevention (STEP) clinic. Methods: We surveyed informal caregivers accompanying stroke patients to our STEP clinic visits within 2 years of ischemic or hemorrhagic stroke occurrence. Assessments included a caregiver demographic questionnaire, Zarit caregiver burden scale, patient health questionnaire-9 (PHQ-9, depression), Barthel index (BI -stroke survivor). Zarit score was dichotomized as no/minimal burden vs mild/moderate/severe burden. Univariate and multivariate analysis were conducted using logistic regression. Results: Among 71 surveys obtained, 69% of informal caregivers were women, despite a similar gender distribution of stroke survivors (54% women). While 49% of caregivers reported some degree of caregiver burden, 34% were classified as moderate-severe or severe. Caregiver burden was strongly associated with stroke survivor physical disability; odds of moderate or worse caregiver burden was 4.5 times higher (95% CI 1.52, 16.1) with BI &lt; 75 compared to = 75. Additionally, odds of moderate-severe depression, as defined by PHQ-9 &gt; 9, were 10 times higher (95% CI 2.06, 48.9). Conclusions: High levels of caregiver burden exist among informal caregivers of stroke survivors, and burden is associated with stroke survivor physical disability. Caregiver burden was associated with significantly greater odds of depression. Findings suggest the need for studies focused on characterization of informal caregiver needs and interventions to address the challenges they face.

Influence of Duration of Caregiving on the Burden and Quality of Life of Informal Caregivers of Stroke Survivors

Introduction: Providing care to stroke survivors takes a huge toll on caregivers, both physically and emotionally. This study evaluated the influence of duration of caregiving on the burden and Quality of Life (QOL) of informal caregivers (CGs) of stroke survivors. Material and Method: The cross-sectional survey study recruited 100 consenting stroke survivors and their CGs using purposive sampling technique. Caregiving duration and daily caregiving hours were assessed using data capture form. Burden and QOL were assessed with Zarit burden interview and WHOQOL BREF respectively. Data were analysed with Chi-square and Kruskal-Wallis as tests of associations and differences between variables respectively using SPSS version 20 at p=0.05 alpha. Findings: The CGs comprised 56(56%) females and 44(44%) males with mean age of 31.73± 12. About 31% of the CGs had mild burden while 53% had good QOL. Significant association exist between daily caregiving hours and each of CGs QOL (X2=14.716; P=0.003) and burden (X218.23; P=0.003). There were significant differences in the QOL and Burden of CGs based on the daily hours of caregiving (P 0.05). Conclusion: Stroke CGs who perform caregiving tasks for twelve or more daily caregiving hours are likely to experience enormous burden and deterioration of their QOL. But duration of caregiving in months or years has no significant influence on the burden and QOL of CGs.

Informal caregiving burden and perceived social support in an acute stroke care facility

BackgroundProviding informal caregiving in the acute in-patient and post-hospital discharge phases places enormous burden on the caregivers who often require some form of social support. However, it appears there are few published studies about informal caregiving in the acute in-patient phase of individuals with stroke particularly in poor-resource countries. This study was designed to evaluate the prevalence of caregiving burden and its association with patient and caregiver-related variables and also level of perceived social support in a sample of informal caregivers of stroke survivors at an acute stroke-care facility in Nigeria.MethodsEthical approval was sought and obtained. Fifty-six (21 males, 35 females) consecutively recruited informal caregivers of stroke survivors at the medical ward of a tertiary health facility in South-Southern Nigeria participated in this cross-sectional survey. Participants’ level of care-giving strain/burden and perceived social support were assessed using the Caregiver Strain Index and the Multidimensional Scale of Perceived Social Support respectively. Caregivers’ and stroke survivors’ socio-demographics were also obtained. Data was analysed using frequency count and percentages, independent t-test, analysis of variance (ANOVA) and partial correlation at α =0.05.ResultsThe prevalence of care-giving burden among caregivers is 96.7% with a high level of strain while 17.9% perceived social support as low. No significant association was found between caregiver burden and any of the caregiver- or survivor-related socio-demographics aside primary level education. Only the family domain of the Multidimensional Scale of Perceived Social Support was significantly correlated with burden (r = − 0.295).ConclusionInformal care-giving burden was highly prevalent in this acute stroke caregiver sample and about one in every five of these caregivers rated social support low. This is a single center study. Healthcare managers and professionals in acute care facilities should device strategies to minimize caregiver burden and these may include family education and involvement.

Multimodal rehabilitation in the late phase after stroke enhances the life situation of informal caregivers

PurposeThe burden of caregiving for stroke survivors is well known, but the effect of late stroke rehabilitation on the life situation of informal caregivers is unknown. Here, we assessed changes in the life situation of informal caregivers of stroke survivors enrolled in a multimodal intervention trial.MethodsThis controlled study was a questionnaire-based survey accompanying a three-armed randomized controlled trial of 123 stroke survivors. The care recipients of 106 caregivers who chose to participate were assigned to rhythm-and-music-based therapy (R-MT; n = 37), horse-riding therapy (H-RT; n = 37), or delayed intervention (control group, n = 32). Perceived changes in the life situation of the caregivers were evaluated with the Life Situation among Spouses after the Stroke Event (LISS) questionnaire before randomization, after the 12-week intervention, and 3 and 6 months later.ResultsAfter the intervention, the change in the median LISS score was significantly higher among intervention caregivers (1.5 [interquartile range (IQR) 8.8]) than controls (1.5 [IQR 8.8] vs. 0.0 [IQR 12.0], p = 0.036). The improvement was maintained at 3 months (1.5 [IQR 9.0] vs. 0.0 [IQR 10.5], p = 0.039) but not at 6 months (p = 0.284).ConclusionEngaging stroke survivors in multimodal interventions late after stroke appears to have potential to produce gains also in the general life situation of informal caregivers.

Caregiver–proxy reliability of the Igbo-culture adapted Maleka Stroke Community Reintegration Measure: a validation study

Objectives: This study was designed to determine the caregiver–proxy reliability of the Igbo-culture adapted urban version of the Maleka Stroke Community Reintegration Measure (I-MSCRIM).Methods: This was a validation study involving 74 consenting stroke survivors and their 74 primary informal caregivers consecutively recruited from selected tertiary hospitals in South-East Nigeria (Igboland). The I-MSCRIM was researcher-administered to the participants. Obtained data was analyzed using frequency counts, percentages, range, mean, standard deviation, Spearman rank order correlation, Mann–Whitney U test, Kruskal–Wallis test and Intra-class Correlation Coefficient. Alpha level was set at 0.05.Results: The mean ages of the stroke survivors (55.4% males) and their primary informal caregivers (41.9% males) were 50.14 ± 12.24 and 31.93 ± 10.9 years respectively. There was no significant difference in the community reintegration (CR) scores as rated by stroke survivors and their primary informal caregivers (p > 0.05). The correlations between stroke survivors’ and primary informal caregivers’ rated CR scores were all adequate and acceptable (ICC = 0.602–0.917). The discrepancy in the total CR scores between the two ratings was significantly influenced by primary informal caregivers’ educational attainment (k = 13.15; p < 0.01).Conclusion: The I-MSCRIM has acceptable caregiver–proxy reliability among Igbo stroke survivors in South-East Nigeria. This suggests that primary informal caregivers of stroke survivors can reliably estimate the CR of their care recipients when I-MSCRIM is administered to them. This will be useful when a stroke survivor cannot respond to I-MSCRIM.

Burden of informal caregivers of stroke survivors: Validation of the Zarit burden interview in an African population.

Background:Informal care giving can be burdensome particularly where the option of institutionalized informal care scarcely exist.Objective:To look at the burden of informal caregivers of stroke survivors using the Zarit burden interview (ZBI).Method:64 stroke survivors were assessed for demographics of age, gender, duration of follow-up since discharged from in-patient care, modified Rankin score at the time of discharge and at the time of evaluation for this study and the most important informal care giver at home was also assessed for whether care giving was telling on their health or life in any negative way. All the caregivers were subsequently assessed with the ZBI.Results:Mean age of most important informal care givers was 40.67 ± 14.27 years and the sex distribution was 33(51.6%) female and 29(45.4%) males. 21(32.8%) reported that caregiving was a health burden. Mean ZBI scores were significantly higher (30.19 ± 14.81 vs 20.30 ± 12.96, P < 0.01) in those that reported that caregiving was telling on their health. ZBI overall rating of burden of caregiving was also significantly associated with whether caregiving was telling on the health of caregiver (P = 0.01) and also symmetrically agreed with whether the burden of caregiving was telling on health (k = 0.33, P < 0.01). The sensitivity and specificity of ZBI were 70% and 68.4% respectively on ROC statistics (AUC = 0.67, P = 0.017).Conclusion:Reported burden of informal caregiving of about 33% is in our opinion huge. The moderate sensitivity and specificity of the ZBI means it could be safely used in the population studied.

Developing a complex intervention programme for informal caregivers of stroke survivors: The Caregivers' Guide.

Stroke affects the entire family system. Failure to meet the needs of caregivers leads to physical and mental overburdening. Stroke caregivers may benefit from professional support. The literature reviews have shown that there is still no clarity concerning the most appropriate set-up of a support programme. In Germany, there is no stroke caregiver support programme that operates throughout the course of rehabilitation. The aim was to develop a complex intervention programme for stroke caregivers in North-Rhine Westphalia, Germany. A naturalistic enquiry approach, using a mixed-methods design, was applied. Within one overarching qualitative study, three separate, explorative, inductive, qualitative substudies were conducted: (i) seven explorative interviews with experienced stroke caregivers, (ii) six semi-structured interviews with professionals working within stroke rehabilitation and (iii) seventeen participant observations with focus on professional-caregiver interactions. Regional stroke units, rehabilitation centres, outpatient services and the home environment of caregivers were included. By means of a four-step qualitative content analysis, all three data sets were coded, categorised and subsequently condensed into subthemes, clustered into main themes, and finally translated into 'Conceptual Building Blocks' of the programme. The need for a personalised, holistic and multicomponent caregiver support programme emerged from all three substudies. Fourteen themes were condensed from the subthemes. Caregivers should be approached directly after stroke using outreach counselling. Support should be provided by a specially trained focal person across the entire patient's rehabilitation trajectory. The newly developed support programme consists of five flexible 'Conceptual Building Blocks': Content, Human Resources, Personalised Approach, Timing and Setting. Through a qualitative mixed-methods design, an in-depth contextual understanding of stroke caregiver needs within the rehabilitative support system was reached. This allowed the development of a context tailored comprehensive caregiver support programme consisting of five 'Conceptual Building Blocks'.

Informal caregivers’ burden and stress in caring for stroke survivors with spatial neglect: an exploratory mixed-method study

Background: Spatial neglect prolongs stroke survivors’ recovery to independence. However, little is known about the impact of spatial neglect on caregivers of stroke survivors.Objective: To explore the factors associated with burden and stress among informal caregivers of stroke survivors with spatial neglect.Methods: Following the previous study of 108 stroke survivors, we reached 24 stroke survivors’ caregivers, and 20 caregivers (age: M±SD=56.9±12.7 years; 12 females) completed the study. 10 survivors had symptoms of spatial neglect, and 10 did not (i.e., SN+ or SN-, respectively) at the time when discharged from inpatient rehabilitation, which was 9.3±6.2 months before the present study. Via a semi-structured telephone interview, we assessed caregivers’ burden and stress qualitatively and quantitatively.Results: No difference was observed across caregiver groups in cognitive function, depressive mood, or community mobility. In comparison, caregivers of the SN+ group allocated more time to care, controlling for survivors’ disability (adjusted effective size d = 1.80). Their self-perceived burden and stress were more severe than the other group (adjusted d = .99). Qualitative analysis indicated caregivers of the SN+ group were more likely to describe economic stressors and undesirable changes in career and vacation planning. While 80% of participants preferred their care recipients to receive additional motor or mobility therapy, caregivers of the SN+ group were more likely to suggest additional therapy for cognitive impairment.Conclusions: This exploratory study suggests that spatial neglect may heighten caregivers’ burden and stress levels. Future studies with a large sample size are required.