Needs, concerns, strategies, and advice of stroke caregivers the first 6 months after discharge.

During the first few months after a stroke, family caregivers must quickly learn how to care for the stroke survivor in the home setting. Although there are some studies that addressed the needs and concerns of stroke caregivers during the early poststroke period, there are very few caregiver studies that reported strategies used by caregivers to deal with their needs and concerns, and studies are lacking that reported the advice that caregivers would offer to others. The purpose of this study was to determine the self-reported needs, concerns, strategies, and advice of family caregivers of stroke survivors during the first 6 months after hospital discharge. Using openended questions, we individually interviewed 14 female family caregivers of stroke survivors (8 African American, 6 white) to identify their needs and concerns, strategies they used to deal with stroke, and advice they would offer to other stroke caregivers. Findings revealed five major categories of caregiver needs and concerns: information, emotions and behaviors, physical care, instrumental care, and personal responses to caregiving. Based on the findings, an initial needs and concerns checklist was developed, along with a list of caregiver strategies and advice. Upon further testing, the needs and concerns checklist, as well as the list of strategies and advice, may help to identify relevant areas for caregiver intervention.     

Depression and caregiver burden experienced by caregivers of Jordanian patients with stroke

Many stroke survivors will be cared for at home, primarily by their relatives. Providing care to a family member with a chronic disabling disease can be both emotionally and physically distressing for the caregivers. The purpose of this study was to investigate the relationship between patients' characteristics, duration of caregiving, daily caregiving time, caregiver's characteristics, caregiver depression and burden in caregivers of patients with stroke. A cross-sectional design was used with a convenience sample of 116 subjects. The Center of Epidemiologic Studies of Depression and the Caregiver Strain Index were used to identify caregiver depression and burden, respectively. Logistic regression analysis identified the influence of independent variables on caregiver depression and caregiver burden. Caregivers had high scores for depression and burden indices. Caregivers' health, receiving professional home health care and caregivers' burden were related to caregiver depression. Functional disabilities of patients with stroke and depression of caregivers were related to caregiver burden. To decrease caregiver depression and burden, nurses must provide caregivers with instructions for home management of patients with stroke. Development of specialized stroke home health services in Jordan that targets patients with stroke and their caregivers are recommended.     

Quality of life and burden of informal caregivers of stroke survivors

Stroke rehabilitation has concentrated on patient-focused intervention, which has reduced the level of disabilities and has increased the number of stroke survivors being managed at home by caregivers. This study was aimed at determining the level of strain experienced by the caregivers of stroke survivors and the quality of life (QoL) of these caregivers. The QoL and caregiving burden among informal caregivers of stroke survivors seen at the physiotherapy outpatient clinic of two hospitals in south-western Nigeria were documented. Participants completed the Personal Wellbeing index for QoL measurement and Modified Caregivers Strain Index for measurement of Caregivers Burden Score. A total of 130 informal caregivers of stroke survivors participated in this study. The mean age of caregivers was 41.1 ± 14.0 years, while that of stroke survivors was 60.4 ± 10.9 years. Among the stroke survivors, 75 (57.8%) were female, whereas 74 (56.9%) of the caregivers were males. The results showed that caregivers' burden was inversely correlated to their QoL (p < 0.001). The lower functional status of the stroke survivors, as recorded by modified Rankin score and Barthel Index, was significantly associated with lower QoL and higher caregiver strain index of the caregivers.     

Comparing Perceived Burden for Korean and American Informal Caregivers of Stroke Survivors

Little is known about the burden of cross‐cultural care for stroke patients. This article compares the perceived burden for caregivers of stroke survivors in Korea and the United States. A brief interview was conducted to determine specific problem areas for caregivers. Caregiver burden (using the Sense of Competence Questionnaire) and social support (using the ENRICHD Social Support Inventory) also were measured. The overall‐sense‐of‐burden‐from‐caregiving score was significantly higher in the Korean cohort than in the American cohort, as was the scale regarding satisfaction with the relationship with the recipient of care. The primary predictors of overall burden for the combined sample were caregiver and patient depression and insufficient social support. Lower perceived social support among Korean caregivers was strongly related to caregiver depression, while it was more strongly related to increased hours of caregiving in the American sample. These findings can help rehabilitation nurses plan supportive interventions that incorporate cultural values for stroke survivors and their caregivers.     

Time and difficulty of tasks provided by family caregivers of stroke survivors.

Family caregivers of stroke survivors are at risk for negative health outcomes such as depression, psychosocial impairments, and even mortality as a result of providing care. Shortened hospital stays have contributed to the urgent need for caregivers to manage difficult and time-consuming tasks required for the care of stroke survivors in the home setting. The purposes of this study were to (a) identify which tasks were perceived as most time-consuming and difficult, (b) determine which of these tasks were most predictive of mood and other negative caregiver outcomes, and (c) evaluate the psychometric properties of the Oberst Caregiving Burden Scale (OCBS) as a measure of tasks in stroke caregivers. A cross-sectional design was employed using mailed questionnaires from 116 family caregivers of stroke survivors featuring the OCBS, the Profile of Mood States Short Form, and the Bakas Caregiving Outcomes Scale. The tasks perceived as most time-consuming and difficult, which also were predictive of mood and other negative caregiver outcomes, were managing finances, managing behaviors, and providing emotional support. Strong psychometric properties of the OCBS were found at both item and subscale levels. Developing an individual profile using the OCBS items may help to target individual support interventions for caregivers. Suggested interventions include referring caregivers to resources for tasks that fall outside the scope of nursing practice, supporting caregivers with tasks such as providing emotional support or managing behavioral problems, and encouraging caregivers to seek care for their own physical, emotional, or social needs.     

Depressive symptoms and diurnal salivary cortisol patterns among female caregivers of stroke survivors

Informal caregivers of stroke survivors experience elevated chronic stress and are at risk of developing depressive symptoms. The cumulative effects of chronic stress can increase allostatic load and dysregulate biological processes, thus increasing risk of stress-related disease. Stress-induced alterations in the pattern of cortisol secretion vary with respect to stressor onset, intensity, and chronicity. Little is known about the psychoendocrine response to stress in female caregivers of stroke survivors. The purpose of this study was to examine perceived stress, caregiver burden, and the association between caregiver depressive symptoms and diurnal cortisol in 45 females caring for a significant other who experienced a stroke within the past year. Women completed the Center for Epidemiologic Studies Depression Scale (CES-D) and collected saliva for cortisol upon awakening, 30 min postawakening, noon, and bedtime for 2 consecutive days. Results revealed that women had high levels of perceived stress and caregiver burden. In women with CES-D scores ≥ 16, salivary cortisol levels were significantly lower across the day relative to women with CES-D scores < 16. This difference persisted after adjusting for age, number of caregiving hours per week, perceived social support, and quality of sleep. Younger age was associated with more depressive symptoms as well as lower levels of cortisol at awakening and 30 min postawakening. Results demonstrate that the burden of caregiving increases risk of depressive symptoms and hypocortisolism across the day. Hypocortisolism may contribute to increased risk of depressive symptoms as a result of the loss of glucocorticoid attenuation of stress-induced inflammation.     

Effectiveness of a strength-oriented psychoeducation on caregiving competence,problem-solving abilities,psychosocial outcomes and physical health among family caregiver of stroke survivors: A randomised controlled trial

BackgroundFamily caregivers provide the foundation for long-term home care of stroke survivors. The overwhelming stress associated with caregiving hinders the ability of family caregivers to utilise their internal and external resources to cope with this situation, thereby placing their own health at risk. We conducted a randomised controlled trial of a strength-oriented psychoeducational programme on conventional stroke rehabilitation for family caregivers.ObjectivesTo evaluate the effectiveness of a strength-oriented psychoeducational programme on the caregiving competence, problem-solving coping abilities, caregiver’s depressive symptoms, caregiving burden and resources (family functioning, social support) and physical health (such as caregiving-related injury), as well as potential placement of stroke survivors.DesignA prospective multi-centre and single-blinded randomised controlled trial stratified by survivors’ history of stroke.Setting and participantsAdult stroke patients and their family caregivers were recruited from the medical wards of a regional acute and two rehabilitation hospitals in the Eastern New Territories of Hong Kong.MethodsThe design of the trial was based on the relational/problem-solving model. Family caregivers of stroke survivors who had been admitted to the study hospitals completed a set of questionnaires before randomisation, immediately, one- and three-months post-intervention. The control group received usual care, whereas the intervention group received an additional 26-week strength-oriented psychoeducational programme (two structured individual face-to-face pre-discharge education sessions on stroke and its associated caregiving skills and six biweekly post-discharge telephone-based problem-solving coping skills training sessions). Data were analysed using the generalized estimating equation and multiple regression models and chi-square tests.ResultsWe recruited 128 caregiver–survivor dyads. The intervention group demonstrated significantly greater improvements throughout the study (p < 0.01) in terms of caregiving competence, problem-solving coping abilities and social support satisfaction. This group also displayed significantly greater improvements in terms of family functioning (p < 0.05) at one-month post-intervention, an increased number of social support (p < 0.001) and a lower level of burden at three-month post-intervention. However, there was no significant effect on enabling stroke survivors to remain in their home. Post-hoc analysis showed a significant and indirect effect of problem-solving coping abilities, which suggested its mediating effect on caregiving competence of stroke caregivers.ConclusionsFindings suggest that incorporating a strength-oriented psychoeducational programme into the existing stroke rehabilitation protocol can foster a healthy transition to caregiving among family members of stroke survivors.     

Social problem-solving partnerships with family caregivers.

The goal of this pilot study was to compare the effectiveness of home and telephone social problem-solving partnerships on primary family caregiver outcomes and to determine whether certain caregiver and stroke survivor characteristics influenced these outcomes. Thirty primary family caregivers were assigned to either a home visit, telephone contact, or control group. A registered nurse trained caregivers in the intervention groups in a series of seven telephone calls or home visits during a 12-week period to use social problem-solving skills in managing caregiving problems. Primary family caregiver outcomes were compared before the intervention, during the intervention (at 2 and 5 weeks after discharge), and after the intervention (at 13 weeks after discharge). Compared to the home and control groups, the telephone group had a significant reduction in depression, more positive problem-solving skills, and greater caregiver preparedness during the intervention, and improved, but nonsignificant depression, problem-solving, and caregiver preparedness scores postintervention. Race, age, and education were significant for selected outcomes.     

Influence of stroke survivor characteristics and family conflict surrounding recovery on caregivers' mental and physical health

BACKGROUND: Stroke recovery is a dynamic process for stroke survivors, and shorter lengths of stay in healthcare settings shift the care of the survivors to family caregivers. The physical and mental sequelae after stroke and the family's response to this catastrophic event may have deleterious effects on caregivers. OBJECTIVE: To examine the influence of stroke survivors' motor function, their memory and behavior changes, and the family conflict surrounding stroke recovery on the mental and physical health of caregivers during the subacute recovery period. METHODS: This cross-sectional, correlational study used baseline data from family caregivers (n = 132) and first-time stroke survivors enrolled in a larger multisite study. RESULTS: The caregivers were primarily White (71%), female (74%), college-educated (73%) spouses (80%) of survivors. Most of the caregivers (66%) reported family conflict. The caregivers from families with lower family functioning scores reported worse mental health.The caregivers reported lower mental health when they were caring for stroke survivors with a combination of high memory/behavior changes and low motor function (R =.30). Family conflict appears to exacerbate the impact of memory and behavior changes on caregiver mental health. Higher caregiver education and no major health problems were associated with better caregiver physical health (R =.36). Caregiver physical health was not associated with family functioning or stroke survivor memory and behavior changes. CONCLUSIONS: These results indicate that memory and behavior changes of stroke survivors and family conflict surrounding stroke recovery are important considerations for assessment during the poststroke recovery period.     

Problem behaviour, caregiver reactions, and impact among caregivers of persons with Alzheimer''s disease

BACKGROUND: Problem behaviours that occur during Alzheimer's disease (AD) can have major impact on caregivers. How caregivers react to these behaviours may determine the total impact experienced from caregiving. PURPOSE: This study examined the relationships between problematic behaviours and caregiving impact in 30 primary caregivers of persons with AD. The first question explored the relationship between frequency of problem behaviour and impact; the second explored the relationship between caregiver reactions to problem behaviours and impact from caregiving. METHODS: The frequency of problem behaviour and the caregiver reaction was measured using The Revised Memory and Behaviour Problem Checklist (Teri et al. 1992). The impact from caregiving was operationalized using the Cost of Care Index developed by Kosberg and Cairl (1986). RESULTS: Significant associations were found for 11 of the 20 subscales that measured the association between the frequency of problem behaviour in the client and the impact from caregiving experienced by the caregiver. In comparison, the association between caregiver's reaction to problem behaviours and impact from caregiving was even more significant in value with 15 subscales of 20 being significant. Female caregivers experienced a greater reaction to disruptive and depressive behaviour when compared with male caregivers even though both genders reported similar frequencies of problem behaviours. In regard to findings about the impact from caregiving, four of the six indicators were higher for women than for men. CONCLUSIONS: Caregiver reaction to problem behaviours was more highly associated with impact from caregiving than the actual frequency of the behaviours. These findings have great implications for intervention programs. Caregivers, especially females, need to receive individualized, specific education/training on how to understand and manage disruptive and depressive behaviour in persons with AD.     

A family caregiver-oriented discharge planning program for older stroke patients and their family caregivers

Aims. To test the effectiveness of a discharge planning program for dyads of older stroke survivors and their family caregivers in Taiwan. Background. Family caregivers of stroke survivors often feel inadequately prepared to deal with the physical, cognitive and emotional needs of the stroke survivors. However, little information could be found on discharge planning programs for caregivers of stroke survivors in Asian families. Design. A randomised experimental design was used to explore the effects of a discharge planning program for 158 dyads of older stroke patients and their family caregivers. Methods. The control group (n = 86 dyads) received only routine hospital discharge planning services and the experimental group (n = 72 dyads) received routine hospital discharge planning services plus the caregiver‐oriented discharge planning program. Outcome variables were measured at baseline, before discharge and one month after hospital discharge. Variables were measured by the Nurse Evaluation of Caregiver Preparation Scale, Preparedness for Caregiving Scale, Caregiver Discharge Needs Satisfaction Scale and Perception of Balance between Competing Needs Scale. Results. Caregivers in the experimental group had significantly better nurse evaluation and self‐evaluation of preparation after the program than before, and greater satisfaction of discharge needs one month after discharge than before discharge. Caregivers in the experimental group had significantly better nurse evaluations and self‐evaluations of preparation and better satisfaction of discharge needs after the program compared with the control group. However, no significant difference was found between caregiver groups in perceived balance of competing needs. Conclusions. This discharge planning program benefited family caregivers of older stroke patients during the transition from hospitalisation to one month after discharge. Relevance to clinical practice. This caregiver‐oriented discharge planning program, with its emphasis on individualised health education and home visits following discharge may improve caregivers’ preparation and the satisfaction of their needs during the discharge transition.     

A comprehensive assessment of family caregivers of stroke survivors during inpatient rehabilitation

Abstract

Purpose: Stroke caregivers have been identified as a group at high risk for poor outcomes as a result of the suddenness of stroke and a potentially high level of care needed due to significant functional limitations of the patient. However, there is little research on the assessment of family members who will assume the caregiving role prior to patient discharge from rehabilitation. The purpose of this article is to delineate critical assessment domains identified by a subset of spousal stroke caregivers. Methods: Semi-structured interviews were conducted pre- and post-discharge from rehabilitation as part of a larger study that focused on identifying caregiver and stroke survivor needs as they transitioned home from inpatient rehabilitation. For this study, two semi-structured interviews with 14 spousal caregivers were analyzed using grounded theory methods. Results: Long-term stroke survivor outcomes were dependent upon the commitment, capacity and preparedness of the family caregiver. Twelve domains of assessment were identified and presented. Conclusions: A comprehensive, systematic caregiver assessment to understand the caregiver’s concerns about stroke should be conducted during rehabilitation to help the team to develop a plan to address unmet needs and better prepare family caregivers to take on the caregiving role.

• Implications for Rehabilitation

• Stroke is a sudden event that often leaves stroke survivors and their families in crisis.

• The needs of stroke family caregivers are not often systematically assessed as part of inpatient rehabilitation.

• Long-term stroke survivor outcomes are dependent upon the commitment, capacity and preparedness of the family caregiver.

• Stroke caregiver assessment should include the commitment, capacity and preparedness to provide care, and the overall impact of stroke in order to develop discharge plans that will adequately address the needs of the stroke survivor/caregiver dyad.

     

A comparison of working versus nonworking family caregivers of stroke survivors.

Because of the trend toward shorter hospital stays, family caregivers of stroke survivors are expected to accept more responsibility for helping survivors during the subacute recovery process. The caregiver role is associated with negative health outcomes, yet existing literature differs on whether work status is a contributor. The purpose of this secondary analysis was to examine how caregiving affects employment and to compare characteristics of working and nonworking caregivers. Baseline data of family caregivers (N = 132) caring for stroke survivors 3-9 months after stroke and enrolled in a national multisite study were used. Caregiver characteristics of physical health, depression, fatigue, family functioning, and family conflict were measured. A total of 36% of caregivers reduced their work hours, resigned, or retired from their jobs to care for their family member. A larger proportion (n = 25, 66%) of minority caregivers were employed (full time or part time) compared to white caregivers (n = 43, 46%). Caregivers employed full time were younger and in better physical health but were at higher risk for depressive symptoms than nonworking caregivers. Family function and conflict were similar between the groups, but working caregivers received more assistance from other family members. Healthcare professionals and employers can use these findings to assist them with recognizing the needs of employed caregivers and offering support measures to facilitate their dual role.     

Family carers of ICU survivors: a survey of the burden they experience

Intensive care unit (ICU) survivors may experience deterioration in their quality of life for months following their return home, with families assuming a caregiving role. The aim of this study was to measure the burden associated with caring for a family member who had been critically ill. The study also sought to describe the relationship between three factors (filial obligation, social support, self-efficacy) and caregiver burden. Seventy-one family carers, 51 females (72%) and 20 (28%) males of long-term intensive care patients completed a mailed survey, after signing an informed consent form. Although the vast majority of the caregivers were providing substantial number of hours of care each week, they scored lower than the midpoint on all caregiver burden inventory subscales. Filial obligation was found to be positively associated with caregiver burden; however, there was no association between social support, self-efficacy and caregiver burden. Male caregivers experienced significantly more burden than female caregivers. The findings suggest that an understanding of the factors that impact on caregiver burden of families of ICU survivors is only beginning to emerge.     

Predictors of postbereavement depressive symptomatology among family caregivers of cancer patients

The present study investigated two aspects of the sequelae of recent bereavement among family caregivers following the death of their cancer patient: (1) the extent to which depressive symptomatology among family caregivers measured following the death of their patient could be predicted by their levels of depressive symptomatology in the months prior to death, their physical health, the setting in which the patient's death occurred, patient age, gender of the caregiver, consanguinity, financial stress, social support from family and friends during the terminal stage, impact of caregiving activities on caregiver's daily schedule, caregiver optimism, perceived esteem attributed to caregiving, the time between the prebereavement assessment and death, and the time between death and the postbereavement assessment; and (2) whether these same explanatory variables could successfully differentiate those bereaved caregivers whose psychological health improved during the first 3 months following bereavement from those who did not improve. A sample of 114 family caregivers of cancer patients were surveyed for approximately 3 months before and 3 months after the death of their patient. A multivariate analysis of variance using the regression approach was undertaken to determine the primary predictors of postbereavement depressive symptomatology. In addition, a logistic regression analysis was used to attempt to predict those caregivers whose depressive symptomatology would improve during the postbereavement period. Critical factors in determining levels of postbereavement depressive symptomatology were caregiver optimism, prebereavement depressive symptomatology, and levels of social support from friends. Caregiver optimism and prebereavement depressive symptomatology were important in predicting whether caregivers' depressive symptomatology would improve or not. Physicians must be aware that if the social history of a patient reveals that he/she is anticipating or has recently experienced the loss of a family member for whom they were the primary caregiver, this information may be critical in determining whether the illness behavior exhibited by the patient has medical or psychosocial origins.