Informal Caregivers Of Stroke Patients Research Articles

The Prevalence of Depression and Its Correlates Among Informal Caregivers of Stroke Patients in an Urban Community.

Introduction Stroke emerges as a prominent causative factor contributing to severe disability and functional limitations, necessitating a reliance on familial support for daily activities and participation in social engagements. Following hospital discharge, a considerable proportion of stroke survivors require comprehensive assistance, including physical, psychosocial, and financial support from caregivers within domestic settings. This transitional phase represents one of the most challenging periods for families. The reciprocal dynamics between stroke survivors and their caregivers are not onlyevident in the context of the caregiving process but also extend to their communal interactions. The disability and depressive symptomatology encountered by stroke survivors significantly impact the overall quality of life, both for the survivors themselves and for their caregivers. This study aims to determine the prevalence of depression among informal caregivers of stroke patients in Malaysia's urban setting, specifically in the University Malaya Medical Centre (UMMC), and examine the predicting associated factors and their relationship with the caregiver burden. Methods A cross-sectional study involving 54 informal caregivers was conducted via face-to-face and phone interviews with all informal caregivers of stroke patients who were attending outpatient specialist rehabilitation clinics, wards, and therapy areas at the UMMC. Patient Health Questionnaire-9 (PHQ-9) and Zarit Burden Interview-22 (ZBI-22) were used to determine the presence of depression and caregiver burden respectively. After conducting descriptive analysis, bivariate analysis was done using Chi-square, Fisher's exact, orMann-Whitney U test. Multivariate analysis was then conducted using logistic regression. Results The overall prevalence of depression among informal caregivers of stroke patients was 18.5%. The prevalence of depression among female informal caregivers andcaregivers who had been giving care for more than six months was 21% (n = 8) and 9.1% (n=3). Caregivers who provided care for more than six months, taking care of stroke patients who were diagnosedmore than six months and had moderate to severe care burden were positivelyassociated with depression. Conclusion Our study found the prevalence of depression among informal caregivers was high. Depression among caregivers was associated with giving care for more than six months, providing care for stroke patients who were diagnosed more than six months, and those with moderate to severe care burden. Therefore, screening for depression should focus on informal caregivers with patients using wheelchairs and higher care burdens.

Psychological status on informal carers for stroke survivors at various phases: a cohort study in China.

In China, the risk of stroke is higher than that in developed countries such as Europe and North America. Informal caregivers play a major role in providing support to stroke survivors. Currently, only limited studies on changes in psychological state of the caregivers at different stages of stroke have been published. To investigate the stress and psychological state of informal caregivers of stroke patients in different periods and to explore the factors that affect their states. 202 informal caregivers of stroke patients were selected in a 3a-grade hospital in Chengdu, Sichuan. Follow-up was conducted by face-to-face interviews, telephone calls, or home visits on days 3, 2 months, and 1 year after onset. We investigated the basic information about the caregivers, including their anxiety, depression and social support conditions. We analyzed the pressure and psychological conditions of informal caregivers at different stages of stroke and analyzed its influencing factors. The data were displayed by the number and percentage of the cases; the continuous variables were described by means and standard deviation. In addition, the data were compared by Pearson correlation analysis and logistic regression analysis. (1) Within 3 days after the onset of stroke, the informal caregivers had the highest stress, the most severe anxiety and depression, the heaviest burden, and the lowest score of medical-social support. Over time, the pressure and burden of the caregivers are gradually decreasing, anxiety and depression are increasing, and social support is also increasing. (2) The stress and psychological status of informal stroke caregivers are affected by multiple factors, including the caregiver's age, relationship with the patient, patient's age, and patient's physical conditions. The stress and psychological status of informal caregivers varied in the different stages of stroke, and they were affected by several factors. Medical staff should pay attention to informal caregivers while providing care for patients. Relevant interventions may be developed based on the results to improve the health of informal caregivers and thus to promote the health of patients.

Validation of Content for an App for Caregivers of Stroke Patients through the Delphi Method.

The aim of this study was to reach a consensus among experts (using the Delphi technique) to validate the informative content that should be included in an App to be used by informal caregivers of stroke patients in order to improve their quality of life, facilitating access to the health care system and involving them in their own health. This technique was developed between June and December 2021. The group of experts was selected on the basis of previously established criteria, and the coefficient of variation (v) was used as a measure of consensus. In addition, the concordance index was calculated to determine the stability of the different rounds. In the first round, the preliminary content, previously elaborated by the research group, was evaluated as very appropriate for the objectives set (N-P < 1.07). In addition, averages of 4.5 out of five and a coefficient of variation of less than 0.5 were obtained, confirming the consensus. In the second round, suggestions were made by the experts on how to improve the content of the information, obtaining 100% agreement with the results obtained in the first round. The results obtained allow a positive evaluation of the use of the Delphi method for the elaboration of the information to be housed in an App.

Validation of the Caregiving Knowledge Questionnaire-My: Measuring Knowledge Regarding Positioning and Feeding among Malaysian Informal Caregivers of Stroke Patients.

Aim:The majority of caregivers for stroke patients in Malaysia are informal caregivers, although there are no valid tools to measure their knowledge regarding caregiving. Therefore, this study validated the Caregiving Knowledge Questionnaire (CKQ-My) as an assessment of Malaysian stroke caregivers' knowledge regarding patient positioning and feeding.Methods:Back-to-back translation was used to produce a bilingual version of the questionnaire. Hand drawings were used to replace photographs from the original questionnaire. Face validity and content validity were assessed, and construct validity was determined by comparing responses from informal caregivers, medical students, and primary care doctors. Finally, the internal consistencies of the subscales were determined.Results:Pretesting showed that the translated version was sufficiently easy to understand. Internal consistency for the positioning subscale (28 items, Cronbach's α = 0.70) and feeding subscale (15 items, Cronbach's α = 0.70) was good. Mean scores for the positioning subscale for caregivers (mean: 17.1 ± 3.9), medical students (mean: 18.9 ± 3.1), and doctors (mean 21.5 ± 2.2) were significantly different (F = 5.28, P ' = 0.011). Mean scores for the feeding subscale for caregivers (mean 13.1 ± 2.5), medical students (mean 16.1 ± 1.9), and doctors (mean 16.1 ± 2.4) also differed significantly (F = 6.217, P = 0.006).Conclusions:CKQ-My has good internal consistency and construct validity for the subscales measuring stroke caregivers' knowledge about positioning and feeding of stroke patients. It has potential as an assessment of effectiveness of caregiver training and for future studies on long-term stroke outcomes in Malaysia.

Abstract WP379: What Informal Caregivers Want in a Mobile Application: Evidence-based Interventions

Background: Nurses play a critical role supporting informal caregivers of stroke patients and thus need evidence of best, client centered interventions. Although there is a growing literature evaluating interventions, there is a paucity of research that begins with and engages caregiver stakeholders in identifying interventions, especially with the use of mobile health technologies. Research Question: What do stroke survivor informal caregivers want in a mobile application? Methods: A cross-sectional, descriptive study of informal stroke caregivers from a national convenience sample of the National Stroke Association database was conducted using a 17-item survey mailed to stroke survivors asking their caregivers to identify useful educational content/knowledge and resources. Descriptive statistics and logistic regressions were performed to analyze data and examine the relationships among demographic variables and caregiver needs. Results: Of 396 respondents, 76% were female (mean age 59 years +/-13.3; range 20-99); 53%, Caucasian; 24%, African-American; 11%, Hispanic/Latino. A majority (76% to 81%) of respondents wanted information about scheduling tasks and appointments, local resources, internet resources, fitness and diet tracking, and tools for communication with the stroke survivor; 81% of respondents wanted information about support groups. Ninety-six percent of caregivers owned a cell phone; 60% of which were smart phones. As age increased, reported usefulness of the app decreased (p = 0.05). There were no significant differences related to gender, race/ethnicity, or whether or not the caregiver owned a smartphone. Conclusion: Consistent responses across population groups suggest that nurses can use the findings to develop mobile applications for smartphone users, to use the content to develop written resource guides for discharge planning, and to customize care plans to support stroke caregivers with and without smartphones. Discharge plans for informal caregivers should include specific information about stroke survivor services, how to arrange healthcare appointments, educational materials about strokes, and guidance in best methods for communicating with the stroke survivor.

Changes in caregiver burden among informal caregivers of stroke patients in Mongolia

Background: Modern therapeutics and health care improvements prolong stroke patients’ survival; however, the degree of disability remains high. Stroke survivors often require caregivers, particularly in the first year after the onset of the stroke. Longitudinal assessment of and factors associated with caregiver burden (CGB) among caregivers of stroke patients has been scarcely discussed. This study aimed to define the changes in CGB in the first year of caregiving among the caregivers of stroke patients and to identify associated factors.Methods: A prospective, multi-centered observational study was conducted in nine public hospitals in Mongolia. We used the Montgomery CGB Scale for assessing CGB, and repeated the assessment after 1 year. Stroke patient characteristics were included in the analyses. Multinomial logistic regressions were conducted to analyze changes in CGB.Results: A paired t-test analysis revealed that demand burden increased (from 12.61 to 11.50, p = 0.034), whereas stress burden decreased (from 10.69 to 11.60, p = 0.016). Although objective burden decreased, the difference was not significant. Factors associated with these changes in CGB were the caregiver’s marital status, the caregiver’s relationship with the patient, financial difficulties, and the patient’s sex and dependency.Discussion: The information on factors predicting changes in CGB in the first year of caregiving provided in this study suggests that social or financial support can assist in reducing CGB among the caregivers of post-stroke patients.

PCV121 - Caregiver Burden and Quality of Life of Informal Caregivers of Stroke Patients: A Prospective Study

PCV121 - Caregiver Burden and Quality of Life of Informal Caregivers of Stroke Patients: A Prospective Study

Social Support Status in Informal Caregivers of Stroke Patients

Social Support Status in Informal Caregivers of Stroke Patients

An abbreviated German version of the Sense of Competence Questionnaire among informal caregivers of relatives who had a stroke: development and validation.

Caregiver burden is a main outcome domain in caregiver intervention research. A recommended instrument for measuring burden is the Sense of Competence Questionnaire (SCQ). In this study, we evaluated the psychometric properties of the German version of the SCQ with informal caregivers of stroke patients. Baseline data of a randomized controlled trial (n=122) and survey data (n=76) of caregivers of stroke patients were used. Data were collected at the caregiver's or the care receiver's home or over the telephone. We evaluated the homogeneity, the construct validity, and the clinical validity of the German version and the homogeneity of a new abbreviated version. The homogeneity of the SCQ indicates good reliability (Cronbach's alpha: 0.89). The three-factor structure of the SCQ was mostly confirmed through principal components analyses using oblimin rotation. Clinical validity was supported through correlations between sense of competence and burden (r=-0.51), depression (r=-0.52), and care recipient's cognitive function (r=0.36). Sixteen items with consistent factor loadings were extracted and proposed as a new abbreviated version of the SCQ (Cronbach's alpha: 0.84). The abbreviated German rendition of the SCQ version that was validated in this study offers a consistent version that can be applied across different languages and among caregivers of stroke survivors or people with dementia.

Factors associated with strain in informal caregivers of stroke patients

Stroke is one of the most prevalent causes of adult disability and handicap. Informal caregivers play an important role in poststroke care. However, informal caregivers may experience strain, which threatens the recovery of stroke subjects. This study aimed to describe changes in strain experienced by informal caregivers from 3 to 6 months after the stroke, and identify the predicting factors. We recruited pairs of inpatients with ischemic stroke and informal caregivers from a tertiary referral hospital and interviewed them at 3 and 6 months after the stroke. Caregiver strain was evaluated using the Caregiver Strain Index (CSI), with a CSI ≥ 7 indicating considerable caregiver strain. Various factors associated with caregiver strain were analyzed using generalized estimating equations. Eighty-nine stroke patients and caregivers completed the study. Considerable strain was reported in 46% and 43% of the caregivers at the 3rd and 6th month, respectively. Patient factors such as severe disabilities (Barthel Index ≤ 60), poor cognition (Mini-Mental State Examination ≤ 23), depression (Beck Depression Inventory [BDI] ≥ 10), and recurrent stroke were predictors for caregiver strain. Caregiver factors, such as changed employment status, help from formal caregivers, and depression (BDI ≥ 10) were also associated with considerable caregiver strain. Nearly 50% of caregivers experienced considerable strain. Interventions aimed at reducing the caregivers' strain should focus on enhancing the functional and emotional status of stroke subjects, prevention of recurrent stroke, and efficient management of depression symptoms in caregivers.

Expectations and experiences of informal caregivers of stroke patients in Portugal

The International Journal of Integrated Care (IJIC) is an online, open-access, peer-reviewed scientific journal that publishes original articles in the field of integrated care on a continuous basis.IJIC has an Impact Factor of 2.913 (2021 JCR, received in June 2022)The IJIC 20th Anniversary Issue was published in 2021.

Sobrecarga del cuidador informal del paciente con ictus a largo plazo

Introduction The members of the family are generally those who assume the care of stroke patients. This study has aimed to know the overload of informal caregivers of stroke patients and to analyze the relationship between this overload and the functional performance of the patients. Patients and method All of the patients who were admitted in our hospital to receive rehabilitation treatment after stroke and who were discharged from July 2007 to February 2008 were included in the study. The caregiver overload was assessed on the Zarit Overload Scale and the functional performance of the patient was evaluated with the Functional Independence Measure (FIM) value at the time of hospital discharge. Results The average time from hospital admission to when the surveys were administered was 15 months (SD 2.07). A total of 78% of the 114 caregivers who participated in the study were women, with a mean age of 61 years. The spouse was the relative most involved as caregiver (69.2%), followed by the children (20.1%). We received the Zarit survey from 69 caregivers, with a mean score of 33.62 (SD 17.23). There was no correlation between the FIM values and the Zarit Scale ( p=0.83). Conclusions Most of the stroke patients live at home, attended by a relative. The usual caregiver is a woman, who suffers a great overload caused by the care she gives. The degree of disability of the patient does not determine, by itself, the overload experienced by the caregiver.

Perceived needs of caregivers of stroke patients’ receiving out-patient physiotherapy treatment in Lusaka, Zambia

Caregivers of stroke patients have needs that should be addressed. The aim of this study was to gain information regarding the expressed needs of informal caregivers of stroke patients who are receiving out-patient physiotherapy treatment at the University Teaching Hospital in Lusaka, Zambia. A qualitative study, using indepth interviews, was carried out to collect data regarding the needs of these caregivers. Ten caregivers formed the study sample. The interviews were audiotaped, transcribed and analysed into themes that emerged from the data. Five themes relating to the needs of the care-givers emerged following the analysis of the data. These included: the lack of information regarding stroke; the need for skills training to enable the caregiver to assist the patient at home; the need for financial support; a need for home-based therapy and the need for physical assistance when caring for patients at home. The caregivers of patients need more information regarding strokes as well as a community-based rather than an institution-based approach to rehabilitation. Rehabilitation professionals in Zambia could use the information gained from this study to implement rehabilitation programmes, which wouldaddress the needs of caregivers in that country

Determinants of Quality of Life in Stroke Survivors and Their Informal Caregivers

We examined longitudinal changes of quality of life (QOL) covering physical and mental factors in an unselected group of stroke patients and their informal caregivers. Our hypothesis was that informal caregivers would have better QOL than patients at both follow-ups, and that changes, if any, would be related to the patients' status. QOL of 304 consecutive stroke patients and their 234 informal caregivers from the population-based Lund Stroke Register was assessed 4 months after stroke onset with the Short Form 36 (SF-36) questionnaire. SF-36 was repeated for both groups after 16 months together with Mini Mental State Examination (MMSE) and Geriatric Depression Scale (GDS-20) for patients. The patients' mean QOL scores improved between 4 and 16 months after stroke in the socio-emotional and mental SF-36 domains and decreased in the domain physical function. Multivariate analyses showed that the patients' most important determinants of QOL after 16 months were GDS-20 score, functional status, age, and gender. Informal caregivers had better QOL than patients except for the domain role emotional and the mental component summary. The caregivers' most important determinants of QOL were their own age and the patients' functional status. Our study highlights depressive symptoms in determining QOL of stroke patients. Despite self-perceived deterioration in physical function over time, several other components of QOL improved, suggesting internal adaptation to changes in their life situations. Informal caregivers of stroke patients may be under considerable strain as suggested by their lower emotional-mental scores.

Long-term effects of a group support program and an individual support program for informal caregivers of stroke patients: which caregivers benefit the most?

In this article, we report the long-term outcomes of an intervention for informal caregivers who are the main provider of stroke survivors’ emotional and physical support. Based on the stress-coping theory of Lazarus and Folkman two intervention designs were developed: a group support program and individual home visits. Both designs aimed at an increase in caregivers’ active coping and knowledge, reducing caregivers’ strain and improving well-being and social support. Caregivers were interviewed before entering the program, and 1 and 6 months after completion of the program. After 6 months, 100 participants remained in the group program, 49 in the home visit program, and 38 in the control group. Multiple stepwise regression analysis was used to determine the effects of the interventions. In the long-term, the interventions (group program and home visits together) contributed to a small to medium increase in confidence in knowledge and the use of an active coping strategy. The amount of social support remained stable in the intervention groups, whereas it decreased in the control group. The same results were found when only the group program was compared with the control group. However, no significant differences between the home visit group and the participants in the group support program were found. Younger female caregivers benefit the most from the interventions. They show greater gains in confidence in knowledge about patient-care and the amount of social support received compared with other caregivers.

Caregivers’ emotional well‐being and their capacity to learn about stroke

This study examines the effects of distress on the capacity of informal caregivers of stroke patients to absorb information about stroke and caregiving. Thirty-seven caregivers took part in a stroke seminar. Minor psychiatric symptoms were related to caregivers' knowledge prior to the seminar, with the more emotionally distressed being the least knowledgeable. The emotional state of the caregivers, however, did not affect how much they learnt. Knowledge after the seminar was best predicted from pre-seminar knowledge and age. Older caregivers were less well-informed afterwards, although they did not differ significantly from younger caregivers in their scores initially. These findings do not discount the possibility that emotional carers are too shocked to take in information from hospital staff at the time of admission. The data do demonstrate that, given time to accept the caregiving role, emotional carers are receptive to learning about stroke and the stroke patient's needs.