Family Caregivers Of Stroke Survivors Research Articles

Social problem-solving abilities, relationship satisfaction and depression among family caregivers of stroke survivors

Primary objective: To examine the prospective relation of caregiver problem-solving abilities and relationship satisfaction to caregiver depression 1 month following care recipient discharge from an inpatient stroke rehabilitation facility.Research design: Correlational, prospective design.Methods and procedures: Participants included 39 women (average age = 51.47, SD = 20.59) and four men (average age = 42.50, SD = 5.57) assuming caregiver roles for persons discharged from stroke rehabilitation.Main outcome measure: The Beck Depression Inventory was the outcome measure at discharge and 1 month later.Results: Caregivers experienced a significant decrease in depression scores between the discharge and 1-month assessments. Lower relationship satisfaction and dysfunctional problem-solving abilities were independently and significantly predictive of depression scores at discharge. Dysfunctional problem-solving abilities were indirectly predictive of depression 1 month later.Conclusions: Dysfunctional problem-solving abilities and low relationship satisfaction are associated with caregiver depression, but dysfunctional problem-solving abilities maintain an indirect association with depression over 1 month. Implications of these findings for developing problem-solving training programmes for caregivers post-discharge are discussed.

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

To test the effectiveness of a discharge planning program for dyads of older stroke survivors and their family caregivers in Taiwan. 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. 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. 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. 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. This discharge planning program benefited family caregivers of older stroke patients during the transition from hospitalisation to one month after discharge. 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.

Factor Structure and Reliability of the Brain Impairment Behavior Scale

Stroke is a leading cause of adult disability because of its physical and cognitive consequences. Cognitive changes are important contributors to family caregivers' experiences of emotional distress. To date, measures to assess cognition treat it as a global construct, but it is more likely that unique domains differentially affect family caregivers. The research objectives in this study were to: (1) identify the different domains of cognitive changes in the form of behavioral and psychological symptoms after stroke, and (2) establish the reliability of the Brain Impairment Behavior Scale (BIBS) in measuring cognitive domains. Family caregivers of stroke survivors (N = 300) completed the BIBS as part of cross-sectional and longitudinal studies. A subsample of caregivers completed the BIBS twice, 2 weeks apart, to examine the scale's test-retest reliability. We used exploratory factor analysis to identify four domains of behavioral and psychological symptoms in the BIBS: apathy, depression/emotional distress, comprehension/memory problems, and irritability. Internal consistency for the subscales representing each identified domain ranged from .78 to .91, and the 2-week intra-class correlation coefficients ranged from .75 to .88. Future research and clinical use of this measure will increase our understanding of how specific domains of stroke survivors' behavioral and psychological symptoms affect the well-being of family caregivers.

“Timing It Right”: A conceptual framework for addressing the support needs of family caregivers to stroke survivors from the hospital to the home

Objective Discuss family caregivers of stroke survivors’ changing needs for education and support across the care continuum. Methods Conceptual review. Results Stroke is a serious, sudden onset illness requiring care across the care continuum. The focus of care, the individuals primarily responsible for providing that care, and patients’ self-care abilities change across care environments. Often family members who provide support also experience changes in their caregiving role. To date, however, interventions for family caregivers have not explicitly considered their changing support needs. Our “Timing It Right” framework highlights family caregivers changing experiences and corresponding support needs across the care continuum. Five different phases of caregiver support are discussed: (1) event/diagnosis; (2) stabilization; (3) preparation; (4) implementation; (5) adaptation. The first two phases occur during acute care, the third occurs during acute care and/or in-patient rehabilitation, and the final two phases occur in the community. Conclusions Application of this framework has the potential to benefit future intervention efforts by identifying gaps in caregiver education, training, and support. Practice implications Recognition of family caregivers changing support needs across the care continuum will assist health care professionals to provide more timely and appropriate support.

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.

Coping and caring: support for family caregivers of stroke survivors

This study examines the physical and emotional burden experienced by caregivers of stroke survivors, compared with caregivers of patients having neurological diseases. Stroke survivors have residual neurological impairment, which requires long-term support and care. Anxiety, depression and poor physical health are common sequelae among family caregivers of stroke survivors. There is a reasonably consistent association between patients' levels of disability and emotional state and the emotional distress of their caregivers. A convenience sample of 47 families was recruited: of the 47 families, 23 had a member who suffered from stroke and 24 had a member with neurological disease. Two interviews were conducted at three and six months after the occurrence of the index stroke or neurological disease. When the two groups of caregivers were compared for anxiety, depression and physical health status after care giving, the caregivers of stroke patients demonstrated higher levels of anxiety and depression than their counterparts in the neurological disease group (p < 0.001). However, there was no significant difference in physical health status between the two groups. Educational attainment, patient group and physical and cognitive impairment of the patients were the predictors of anxiety and the depressive status of the caregivers, while their age and level of depression contributed significantly to their physical health status. The physical and emotional well-being of two groups of family caregivers in a neurosurgical unit were compared in the caring context. The caregivers of stroke survivors are at a greater risk of developing poor physical and emotional health than the caregivers of patients having neurological diseases. The results illustrated that enhanced discharge planning and nurse follow-up sessions are considered essential in maintaining the well-being of the stroke caregivers and bridging the gap between the hospital and the community.

Changing needs of Chinese family caregivers of stroke survivors

To examine the changing needs of Chinese family caregivers before and after stroke survivors' discharge from hospital. Stroke ranks third as the most common cause of death in Hong Kong and is the leading cause of adult disability. Community care has been adopted as the major source of care for older people in Hong Kong and this has impacted on family caregivers. This is a descriptive-correlational design using a within-subjects design. The needs of 40 Chinese family caregivers who met the inclusion criteria were assessed before discharge and two weeks later using the Carer Assessment Scale, Cost of Care Index and one open-ended question. Modified Barthel Index measured the functional ability of stroke survivors. Family caregivers are able to anticipate most of their needs and to make provision to meet the basic practical needs before discharge. Although needs changed after discharge the four most important needs persisted. These were associated with emotional and psychological problems and financial difficulties. Discharge destinations made no difference to the total scores obtained using the above scales. This study provides information about need at a time of transition in an under-researched population of Chinese caregivers. Assessment of need is important with Chinese family carers in order to identify focused interventions in a population, i.e. reluctant to make their needs known to professional services. More research about caregiving problems for Chinese family caregivers at the transition from hospital to community is required. Ongoing need assessment by nurses who are in regular contact with caregivers in hospital and community will enable appropriate interventions such as providing education and emotional support both before and after discharge to be offered to Chinese communities.

Restructuring Life

Family caregivers of stroke survivors who are just beginning their role must learn new skills and incorporate new knowledge into their daily activities. This can be a time of increased anxiety and stress for them. Nurses and other health professionals need more knowledge about this transition from the perspective of the caregivers. The purpose of this grounded theory study was to describe the process associated with preparing for and beginning a new caregiving role following a family member's stroke. Caregivers who were new to the role were interviewed prior to the stroke survivor's discharge and 4 weeks after discharge. The grounded theory, Restructuring Life for Caregiving, was associated with five dimensions of participants' lives: daily life, managing multiple roles, relationship with the stroke survivor, future hopes and plans, and time for self. The process of waiting, rearranging, and stabilizing further explained the timing and elements of restructuring activities.

Long-Term Caregiving After Stroke

This study examined the health-related quality of life (HRQL) and overall quality of life (QOL) of family caregivers of stroke survivors to determine changes over time and to identify QOL predictors. Caregivers were interviewed after 1.5 and 2 years of caregiving. The scores on the mental subscales were significantly lower than on the age- and sex-matched population norms. The most important predictors of QOL were the stroke survivor's behavioral disturbances and reintegration into normal patterns of living. Caregivers who reported fewer stroke-survivor behavioral disturbances and well-adjusted reintegration also reported a higher personal QOL. These results highlight the impact of a stroke on the caregiver's HRQL and QOL, even after 2 years, and the importance of interventions for caregivers.

Psychometric Testing of the Revised 15-item Bakas Caregiving Outcomes Scale

Family caregivers of stroke survivors experience a variety of negative social, emotional, and health-related outcomes as a result of providing care. : To psychometrically test the revised 15-item Bakas Caregiving Outcomes Scale (BCOS) measuring life changes specifically resulting from providing care. The original 10-item BCOS was improved by adding five items addressing financial well-being, level of energy, role functioning, physical functioning, and general health. Psychometric testing of the revised 15-item BCOS using a sample of 147 family caregivers of stroke survivors approximately 4 months after stroke was conducted to determine the quality of the items, internal consistency reliability, test-retest reliability, construct validity, and criterion-related validity. Most caregivers were women (78.9%), White (68.0%) or African American (29.9%), and either spouses (60.1%) or adult children (31.3%). Satisfactory evidence of internal consistency (alpha = .90) and 2-week test-retest reliability (intraclass coefficient [ICC] = .66; 95% confidence interval [CI] = 0.42-0.81) was provided, with item-to-total correlations ranging from .41 to .74. Unidimensionality was supported by confirmatory factor analysis with indices, indicating a good fit. Using hierarchical multiple regression, 36% of the BCOS variance was explained by constructs in the conceptual model [F(11,132) = 6.72, p < .001]. Criterion-related validity was supported by correlations with the 36-item Short Form (SF-36) General Health Subscale (r = .32, p < .001) and a criterion variable measuring how caregivers' lives had changed overall (r = .67, p < .001). The revised 15-item BCOS has evidence of satisfactory reliability and validity in family caregivers of stroke survivors. The BCOS is a valuable measure in research and can be used to identify priority areas for nursing interventions designed to improve caregivers' outcomes.

Problems and Associated Feelings Experienced by Family Caregivers of Stroke Survivors the Second and Third Month Postdischarge

This study identified problems and associated feelings experienced by family caregivers of stroke survivors during the second and third month after discharge from a rehabilitation facility to home. Safety was the most frequent problem identified by family caregivers. Other problems were managing activities of daily living (ADLs) and cognitive, behavioral, and emotional changes by stroke survivors. About half of caregivers expressed more positive feelings toward managing these problems by week 8 and the majority expressed these feelings by week 12.

Social Support, Social Problem-Solving Abilities, and Adjustment of Family Caregivers of Stroke Survivors

Grant JS, Elliott TR, Weaver M, Glandon GL, Raper JL, Giger JN. Social support, social problem-solving abilities, and adjustment of family caregivers of stroke survivors. Objective To determine contributions of social support and social problem-solving abilities in prediction of adjustment of family caregivers of stroke survivors. Design Descriptive. Setting Two rehabilitation facilities (1 private, 1 state) in the southeastern United States. Participants Fifty-two family caregivers (46 women, 6 men) of stroke survivors (28 women, 24 men). Interventions Not applicable. Main Outcome Measures Predictor variables were social support and social problem-solving abilities. Outcome measures of caregiver adjustment were depressive symptomatology, well-being, and general health. Participants completed these measures 1 to 2 days before discharge from inpatient rehabilitation and at 5, 9, and 13 weeks postdischarge in the home. Results Trajectory analysis indicated higher levels of social support were associated with lower levels of caregiver depressive symptomatology and higher levels of well-being and general health, independent of social problem solving. A greater negative problem orientation was associated with higher levels of depressive symptomatology and lower levels of well-being. A more positive problem orientation was associated with greater increases in general health. The strength or slope of this positive relation lessened over time. Conclusions Social support and the emotion-focused component of social problem solving, problem orientation, independently contribute to caregiver adjustment. Interventions that provide social support and assist caregivers to develop more adaptive abilities toward problem solving may be beneficial.

Sociodemographic, physical and psychosocial factors associated with depressive behaviour in family caregivers of stroke survivors in the acute care phase

Primary objective: This study examined sociodemographic, physical and psychosocial characteristics of family caregivers of stroke survivors at risk for depression.Research design: A correlational study.Methods and procedures: Data were collected from 52 family caregivers and care recipients with ischemic stroke. Data were collected 1–2 days before discharge from a rehabilitative facility and at 5, 9 and 13 weeks post-discharge.Main outcomes and results: Compared to African Americans, Caucasians had ∼3.7 times higher odds of being at risk. The odds of being at risk for depressive behaviour decreased by 30% for each unit increase in belonging and increased by 5% for each unit increase in burden.Conclusions: Family caregivers who are isolated from others may benefit from therapeutic interventions that facilitate social interaction and decrease caregiver burden. Ethnic differences in caregiver depression merit further research.

Caregiving problems and feelings experienced by family caregivers of stroke survivors the first month after discharge.

The purpose of this study was to identify the major problems and associated feelings experienced by family caregivers of stroke survivors during the first month after returning home. Safety, difficulty in managing activities of daily living, and cognitive, behavioral and emotional changes of stroke survivors (for example, mood swings, lack of motivation, forgetfulness and memory loss, depression and calling the caregiver often) were the three most common problems experienced by caregivers during the first month. Other problems were loss of caregiver independence, confinement, tiredness and inadequate time to do caregiving tasks as well as managing stroke survivor physical symptoms, for example, pain, not eating and skin problems. The first month of caregiving is very dynamic and distressful for caregivers of stroke survivors and telephone contacts appear to be beneficial in assisting caregivers to cope with the caregiving process.

Family Caregivers of Stroke Survivors: Characteristics of Caregivers at Risk for Depression.

Objective: To examine characteristics that best predict family caregivers of stroke survivors at risk for depression. Survivor and caregiver demographic variables and caregiver general health, problem-solving skills, social support, satisfaction with rehabilitation health care services, preparedness, and burden were examined. Design: A correlational design. Participants: Seventy-four family caregivers of individuals receiving inpatient stroke rehabilitation were interviewed 1–2 days prior to their relative’s discharge. Main Outcome Measure: The Center for Epidemiologic Studies Depression Scale (L. S. Radloff, 1977). Results: Caregivers at risk for depression had a negative orientation toward solving problems, a lack of caregiver preparedness, and impaired social functioning secondary to their own health. Conclusions: Rehabilitation psychologists should be aware that these variables are important in predicting family caregivers of stroke survivors at risk for depression.

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.

Toward a model of quality of life for family caregivers of stroke survivors.

The important role of family caregivers in maintaining their disabled and elderly members in the community is becoming increasingly recognized. Caregiver research, for the most part, has explored burden and emotional distress as outcomes of the caregiving experience. Although there is a growing consensus among health-care researchers concerning the importance of quality of life (QoL) as an outcome, there is little research examining QoL of family caregivers. The purpose of this paper, therefore, was to construct a conceptual framework from which to study the QoL of family caregivers of stroke survivors. Findings from a review of studies addressing the QoL of these caregivers guided the development of the model. The components of the model include the caregiving situation, characteristics of the caregiver, and environmental factors, and their proposed relationships with QoL. This model provides a framework for investigating how the caregiving experience impacts on the caregiver's QoL.

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.

Predictors of Emotional Distress, General Health, and Caregiving Outcomes in Family Caregivers of Stroke Survivors

Predictors of emotional distress, general health, and stroke-related caregiving outcomes were determined in 104 family caregivers of stroke survivors based on a conceptual model derived from Lazarus’ theory of stress and coping. Predictors of emotional distress (R2 = .48, p < .001) were low caregiver self-esteem, high task difficulty, and high threat appraisal. Predictors of poorer health (R2 = .25, p < .001) were not living with the patient, low household income, and high threat appraisal. Predictors of poor stroke-related care-giving outcomes (R2 = .45, p < .001) were emotional distress, low benefit appraisal, high task difficulty, and high threat appraisal. Findings suggest potential areas for multidimensional caregiver interventions.

Family caregiver expectations and management of the stroke trajectory.

Less than 20% of stroke survivors enter rehabilitation or long-term care facilities after their stroke. Stroke recovery is extremely variable and the resulting uncertainty places a heavy burden on the survivors' family caregivers. According to the trajectory framework, chronic conditions have a defined course that can be shaped and managed. This grounded theory study, part of a larger research project, explored the expectations of family caregivers of the stroke trajectory and their management strategies. Thirteen family caregivers of stroke patients in a sparsely populated area participated in semi-structured interviews. The caregivers were without ideas about what the recovery of their loved ones would be like and had difficulty making projections about the trajectory. They used several strategies, however, in attempts to manage the stroke trajectory. They constructed a positive recovery, reconstituted family life, maintained family routines, created a safety net, and redoubled self-reliance. The findings have implications for how nurses support family caregivers of stroke survivors.