Stroke Caregiver Depression: Qualitative Comparison of Treatment Responders and Nonresponders at 1 Year.

BACKGROUND: Mixed-method studies can shed light on the mechanisms through which interventions effectively reduce caregiver depression. OBJECTIVE: The objective of this qualitative study was to understand factors contributing to reduced depressive symptoms in stroke caregiver treatment responders compared with nonresponders. METHODS: A mixed-methods explanatory sequential design was used to assess cognitive behavioral coping use and helpfulness in reducing depression among experimental study treatment responders and nonresponders. Using purposive sampling at 1-year of caregiving, we selected responders who were not depressed or demonstrated reduction to probable depression and nonresponders whose scores indicated worsened or new depression. Participants responded to semistructured interviews on life changes and the use and helpfulness of intervention coping strategies. Thematic analysis identified codes and themes. RESULTS: Twelve of 25 participants were responders. We identified 2 overarching outcome themes: "It was about me, changing to make life better" (responders) and "Lamenting our changed lives" (nonresponders). Five subthemes related to coping were identified. Whereas responders coped actively and were less dependent on the counseling relationship, nonresponders were passive in coping and more dependent on the initial counseling relationship. Anger or previous psychologic treatment was found in more than a quarter of nonresponders and in no responders. Negative life change was found in 9 of 13 nonresponders compared with 1 responder. CONCLUSION: Findings support the helpfulness of cognitive behavioral coping. For many caregivers, engagement interviews and a more intense, longer intervention, such as stepped care and anger management, are indicated to mitigate treatment resistance and depressive symptoms, respectively.

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

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

Depressive Symptom Trajectories in Family Caregivers of Stroke Survivors During First Year of Caregiving.

BACKGROUND: The purpose of this study was to identify patterns of depressive symptom trajectory and examine the associations of the symptom trajectory with caregiving burden, family function, social support, and perceived health status of caregivers of stroke survivors during the first year of caregiving after discharge from rehabilitation center. METHODS: Caregivers of stroke survivors completed a survey of depressive symptoms, caregiving burden, family function, perceived availability of social support, and perceived health status at postdischarge and 1 year. Patterns of depressive symptom trajectory (ie, symptom-free, symptom relieved, symptom developed, and persistent symptom groups) were identified by grouping depressive symptoms based on 2 assessments using the Center for Epidemiologic Studies-Depression. Repeated-measures analysis of variance and multinomial logistic regression were used to examine the associations. RESULTS: Of the 102 caregivers, 57.8% were symptom-free, 20.6% experienced persistent depressive symptoms, 11.8% relieved depressive symptoms, and 9.8% developed depressive symptoms. There were significant changes in family function (Wilks λ = 0.914, P = .038) and perceived health status (Wilks λ = 0.914, P = .033) among the groups during the first year of caregiving. The persistent symptom group reported the highest level of burden and the lowest level of family function and perceived availability of social support at both assessment times. Compared with symptom-free caregivers, caregivers with persistent depressive symptoms were 7 times more likely to have fair/poor health rather than excellent/very good health at 1 year (odds ratio, 7.149; P = .012). CONCLUSION: Caregivers with persistent depressive symptoms are the most vulnerable to negative psychosocial outcomes and poor perceived health status during the first year of caregiving from discharge for stroke survivors.

Evidence for stroke family caregiver and dyad interventions: a statement for healthcare professionals from the American Heart Association and American Stroke Association.

Stroke is a leading cause of severe, long-term disability. Most stroke survivors are cared for in the home by a family caregiver. Caregiver stress is a leading cause of stroke survivor institutionalization, which results in significant costs to the healthcare system. Stroke family caregiver and dyad intervention studies have reported a variety of outcomes. A critical analysis of 17 caregiver intervention studies and 15 caregiver/stroke survivor dyad intervention studies was conducted to provide evidence-based recommendations for the implementation and future design of stroke family caregiver and dyad interventions.

Risk adjustment of ischemic stroke outcomes for comparing hospital performance: a statement for healthcare professionals from the American Heart Association/American Stroke Association.

BACKGROUND AND PURPOSE: Stroke is the fourth-leading cause of death and a leading cause of long-term major disability in the United States. Measuring outcomes after stroke has important policy implications. The primary goals of this consensus statement are to (1) review statistical considerations when evaluating models that define hospital performance in providing stroke care; (2) discuss the benefits, limitations, and potential unintended consequences of using various outcome measures when evaluating the quality of ischemic stroke care at the hospital level; (3) summarize the evidence on the role of specific clinical and administrative variables, including patient preferences, in risk-adjusted models of ischemic stroke outcomes; (4) provide recommendations on the minimum list of variables that should be included in risk adjustment of ischemic stroke outcomes for comparisons of quality at the hospital level; and (5) provide recommendations for further research. METHODS AND RESULTS: This statement gives an overview of statistical considerations for the evaluation of hospital-level outcomes after stroke and provides a systematic review of the literature for the following outcome measures for ischemic stroke at 30 days: functional outcomes, mortality, and readmissions. Data on outcomes after stroke have primarily involved studies conducted at an individual patient level rather than a hospital level. On the basis of the available information, the following factors should be included in all hospital-level risk-adjustment models: age, sex, stroke severity, comorbid conditions, and vascular risk factors. Because stroke severity is the most important prognostic factor for individual patients and appears to be a significant predictor of hospital-level performance for 30-day mortality, inclusion of a stroke severity measure in risk-adjustment models for 30-day outcome measures is recommended. Risk-adjustment models that do not include stroke severity or other recommended variables must provide comparable classification of hospital performance as models that include these variables. Stroke severity and other variables that are included in risk-adjustment models should be standardized across sites, so that their reliability and accuracy are equivalent. There is a pressing need for research in multiple areas to better identify methods and metrics to evaluate outcomes of stroke care. CONCLUSIONS: There are a number of important methodological challenges in undertaking risk-adjusted outcome comparisons to assess the quality of stroke care in different hospitals. It is important for stakeholders to recognize these challenges and for there to be a concerted approach to improving the methods for quality assessment and improvement.

Development of a measure of skin care belief scales for persons with spinal cord injury.

OBJECTIVES: To develop and validate a measure of skin care beliefs and to describe the skin care behaviors of persons with spinal cord injury (SCI). DESIGN: A mixed-methods design was used to develop the Skin Care Beliefs Scales (SCBS). The health belief model framed the hypotheses. Phase 1 included item development, content validity testing, and pilot testing. Phase 2 included testing the scale structure (principal components analysis), internal consistency reliability, test-retest reliability, and relationships between the belief scales and care behaviors. SETTING: Two acute rehabilitation hospitals and Internet websites. PARTICIPANTS: Patients with SCI (N=462; qualitative/pilot n=56; psychometric study n=406) participated. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The pilot and phase 2 studies, respectively, used 146-item and 114-item versions of the SCBS. A skin care activity log was used to record skin care behaviors. RESULTS: Content validity indicated that the items were relevant and clear. The analysis resulted in 11 independent scales reflecting 3 general beliefs (susceptibility, severity, self-efficacy) and barrier and benefit behavior-specific scales for skin checks, wheelchair pressure reliefs, and turning and sitting times. With the exception of skin check barriers (α=.65), Cronbach alphas of the scale ranged from .74 to .94. Test-retest intraclass correlations were fair to excellent (range, .42-.75). Construct validity was supported. Hierarchical linear regression indicated that turning benefits, barriers, susceptibility, and self-efficacy were significant predictors of turning time. Benefits or barriers were correlated significantly with skin check and pressure relief adherence (ρ range, -.17 to -.33). Self-efficacy was correlated with wheelchair pressure relief (ρ=.18). Skin care behavior adherence varied widely (eg, 0%-100%). CONCLUSIONS: The scales showed acceptable reliability and validity. Further testing with larger samples is desirable.

A problem-solving early intervention for stroke caregivers: one year follow-up.

PURPOSE: The study purposes were to assess the efficacy of a caregiver problem-solving intervention (CPSI) on stroke caregiver physical and psychosocial adaptation compared with a wait-list control (WLC) treatment, and to assess the mediation effects of coping on outcomes. METHODS: A stress and coping model guided the study design. Outcomes were depression, anxiety, preparedness, life changes, and family functioning. CPSI started during acute rehabilitation and continued 3 months postdischarge. Data were collected at baseline (T1), postintervention (T2), and 6 (T3) and 12 months postdischarge (T4). RESULTS: Of 255 caregivers, 75% were depressed at baseline. Repeated measures ANOVA of study completers (n = 121) indicated improved T2 depression, life change, and health (ps < .04) favoring the CPSI group. Improvements faded by 6 months. Although no group differences in outcomes were found in the intention-to-treat analysis, growth curve modeling indicated a difference in depression rate of change, favoring the CPSI (p = .04). Perceived health, threat appraisal and rational problem-solving were significant mediators (ps < .05). CONCLUSIONS: Findings provide direction for future interventions to promote and sustain healthy caregiver adaptation.

Patterns of relationships between background characteristics, coping, and stroke caregiver outcomes.

PURPOSE: Little is known about mediators of stroke caregiver outcomes or patterns of relationships of outcome predictors. We examined relationships between the variable sets of caregiver and stroke survivor characteristics, coping (proposed mediators), and caregiver outcomes. METHODS: We assessed 253 dyads prior to discharge from acute rehabilitation. Outcomes were depression, anxiety, preparedness, life change, and family functioning. Coping included problem solving, caregiver appraisal, and unmet resource needs. Multivariate canonical correlation analyses were computed between the sets of variables to identify unique patterns of relationships. RESULTS: Six patterns of significant relationships were found (R =.30 to .84, Ps <.01 to .02). The strongest relationship was that between greater threat appraisal and negative life change, greater anxiety, and lower caregiving preparedness (P < .01). Caregiver characteristics (nonwhite, spousal caregivers) were related significantly to several outcomes (positive life change, lower anxiety, and less healthy family functioning) (R = .43, P <.01) and remained significant after controlling for the effect of mediators (R = .32, P < .02). CONCLUSION: Findings suggest various patterns of relationships that provide guidance for individualizing early caregiver intervention. Clinicians can build on caregivers' strengths while identifying threats to adaptation to tailor interventions that promote healthy outcomes.

Stroke caregivers: pressing problems reported during the first months of caregiving.

The major purpose of this study was to identify the types and frequency of caregiving problems and associated stress and coping effectiveness. Secondary purposes were (a) to examine changes in problem frequency, stress, and coping effectiveness over time and (b) to identify relationships between problem stress and personal, illness, coping, and well-being variables. A stress and coping model guided the study. Fifty-eight caregivers participated during the first 4 months of caregiving. Caregiver and stroke survivor demographic and well-being data were collected during acute rehabilitation. Three problem-related themes emerged: interpersonal disruptions, sustaining the self and the family, and stroke survivor functioning. Although problems sustaining the self and the family were most frequent, interpersonal disruption problems were rated most stressful and lowest in coping effectiveness. A component of emotional distress, either anxiety or depression, was related significantly (p < .05) to the stress level of each problem theme. Counseling on problem-solving strategies may improve caregiver well-being.

Preventive skin care beliefs of people with spinal cord injury.

Although health beliefs have been correlated with self-care adherence in other chronic conditions, little is known about skin care beliefs after spinal cord injury (SCI). The purpose of this qualitative study was to identify the skin care beliefs of individuals with SCI. The conceptual framework was the Health Belief Model (HBM), which proposes that adherence to a health regimen is motivated by beliefs about susceptibility, severity, barriers, benefits, and self-efficacy. Purposive sampling was used to recruit 22 people with SCI. Content analysis of data collected using semistructured questions was used to identify domains of skin care beliefs, including HBM components. Themes that emerged about skin care beliefs included taking vigilant care, taking charge, maintaining health, and passing up care. Although most participants believed they were susceptible to pressure ulcers and preventive care was important, paradoxical statements about beliefs and preventive behaviors were common. These incongruent responses may reflect ambivalence about competing priorities or the efficacy of preventive practices. Further research is needed to understand this phenomenon. Increased understanding of skin care beliefs will assist in developing tailored teaching programs for people with SCI.

The use of writing groups to facilitate adaptation after stroke.

PURPOSE: This is a report on a pilot study of small writing groups to assist in long-term adaptation after stroke onset. METHOD: 26 stroke survivors participated in a small group experience to write a short essay to be published about their recovery. The sample consisted of middle-aged, well-educated participants who were several years post stroke and were self-selected by interest and experience in writing. The sample was evenly divided between men and women, and minority racial groups were adequately represented. Essays were published on a website and clustered in themes about coping with recovery and personal growth/changes in self-concept. RESULTS: The group experience was well received by participants. Objective measures showed a trend toward improvement in positive identity and no significant change in depression or well-being. Significant differences found between subgroups (improved vs. declined; aphasia vs. no aphasia) are discussed. Anecdotal observations of the group process and implications for practice and further research are provided.

Problem-solving early intervention: a pilot study of stroke caregivers.

Caregivers (CGs) of stroke survivors assume their role suddenly and with little preparation. Negative emotions are common, persist over time, and are related to other negative outcomes. This pilot study, guided by a coping model, examined the efficacy and durability of a caregiver problem-solving intervention (CPSI) on CG and stroke survivor outcomes. Additional aims included assessment of feasibility issues and reliability and sensitivity of the study measures. The nonrandom sample of 15 stroke CGs was matched on depression and demographics with a comparison group. The CPSI started during acute rehabilitation and continued through 2 months after discharge. Parametric and nonparametric tests were used to assess achievement of the aims. CG depression, anxiety, preparedness, and survivor motor function improved significantly in the intervention group over time. Burden, life changes, and taking care of CG's own needs did not change significantly. CPSI group CG depression significantly improved compared with the matched group. The improvement in outcomes for the CPSI group supports further testing of the intervention with a large sample.

Stroke caregiving: difficult times, resource use, and needs during the first 2 years.

Despite high levels of distress among stroke caregivers, research on resource use and unmet needs is limited. The major purposes of this study were to identify the most difficult times, unmet needs, and advice of caregivers during the first 2 years of caregiving; and to examine resource use and perceptions of resource importance. Qualitative and quantitative methods were used. The hospitalization period and first months at home were most difficult for 76% of caregivers. Unmet needs were related to caregiver preparation, promoting the survivor's function, and sustaining the self and family. Although 50% or more of caregivers rated most resources important, only home health care was used by 50% of caregivers. Findings can aid clinicians in educating and counseling caregivers to reduce distress.

Telephone group intervention for older stroke caregivers.

PURPOSE: This study evaluated the effectiveness of telephone groups for older, spousal caregivers of stroke survivors. METHOD: The 88 caregivers were mostly white females who were 70 years old on average and who had been providing care for an average of 3 years. Participants were randomized to treatment or control conditions, followed for 6 months, and assessed for depression, burden, loneliness, stress, and competence. Treatment participants engaged in an eight-session psychoeducational telephone group. RESULTS: Treatment participants showed decreased stress over time but were not significantly different from control participants in the amount of change in stress. Control participants showed a significant increase in burden during the study; treatment participants showed a significant increase in competence.

Analysis of problem types and difficulty among older stroke caregivers.

Stroke onset causes disruption of family roles as caregiving tasks are assumed. The current study presents a qualitative and quantitative analysis of the problems of 123 older, spousal stroke caregivers. Problems were coded into 14 categories; frequencies of occurrence and difficulty were also analyzed. Differences in problem difficulties were examined by race, gender, years caregiving, and care receiver's functional level, depression, burden, and loneliness. Noncompliance was the least frequent but most difficult problem type. Lack of social involvement was the most frequent problem type and the most difficult for the more depressed, burdened, and lonely caregivers. This increase in problem specificity and detail of analysis has provided direction for clinical application in counseling the spouses of stroke survivors on how to manage the stress of their new life role.

Adaptation to stroke: a longitudinal study of depressive symptoms, physical health, and coping process.

The purposes of this study were to describe the natural history of adaptation to stroke and to identify survivor and caregiver predictors of depressive symptoms. Data were collected for 53 stroke survivors at four times from acute rehabilitation (T1) to 2 years post discharge (T4). Significant improvement occurred in depressive symptoms and perception of health, but change in the rate of depression was not significant. Family functioning became less healthy. Significant predictors of greater levels of depressive symptoms were lower levels of total support, finding meaning, and avoidance coping (T1) and lower levels of family functioning and belonging support (T4). Treatments to promote adaptation can be developed based on these predictors.

The stroke caregiver unmet resource needs scale: development and psychometric testing.

The purposes of this study were to develop and validate a measure of unmet resource needs of the caregivers of survivors of stroke and to describe the caregivers' unmet needs during 1 year. A longitudinal, descriptive design was used to test the reliability and validity of the Unmet Resource Needs (URN) measure. Item development was based on literature review and preliminary study findings. A stress and coping conceptual model framed the hypotheses. Psychometric testing was based on 6-month postdischarge data (n = 166). Content and structural construct validity, internal consistency reliability through 1 year, and concurrent validity were tested. Change in URN over time was examined. Content validity was supported by floor and ceiling effects less than 5%. Principal axis factoring yielded a 12-item, two-factor solution reflecting general and technology unmet needs. Internal consistency reliability was satisfactory for the total scale and subscales at all times, excepting the baseline three-item technology scale (α = .56). Concurrent validity was supported by significant correlations with model constructs (threat, positive problem solving, depression, preparedness; p < .01) in the expected direction. Functional status and resource use were not associated with the URN. Repeated measures analysis of variance (n = 123) indicated a significant decrease in unmet needs from baseline to 3, 6, and 12 months postdischarge (p < .001). Nevertheless, 42% reported one or more unmet needs at year 1. Assessment and counseling on unmet needs is indicated throughout the caregiving trajectory to reduce negative outcomes.

Adaptation to stroke: Comparison of spouses of stroke survivors with and without aphasia.

The purpose of this study was to compare adaptation to a partner's stroke in spouses of aphasic stroke survivors (SASS) and spouses of nonaphasic stroke survivors (SNASS) over time. Cognitive appraisal of the impact of stroke, difficult adaptive tasks, and depression were examined in 15 SASS and 20 SNASS. Data were collected prior to discharge from rehabilitation and at 6 to 10 weeks and 1 year postdischarge. For the entire group, depression scores decreased significantly (p < .05) over time. The reduction in depression was equivalent in both groups. Differences and similarities in patterns of change in appraisal of stroke and in adaptive tasks are discussed.