Joan S. Grant

Selection and use of content experts for instrument development

Content experts frequently are used in the judgment-quantification stage of content validation of instruments. However, errors in instrumentation may arise when important steps in selecting and using these experts are not carefully planned. The systematic process of choosing, orienting, and using content experts in the judgment-qualification stage of instrument development is addressed, with particular attention to the often neglected, important step of familiarizing these experts with the conceptual underpinnings and measurement model of the instrument. An example using experts to validate content for a measure of caregiver burden is used to illustrate this stage of instrument review.

Problems and Benefits Reported by Stroke Family Caregivers: Results From a Prospective Epidemiological Study

Background and Purpose— Stroke symptoms can be very stressful for family caregivers, but most knowledge about the prevalence and stressfulness of stroke-related patient problems is derived from convenience samples. In addition, little is known about perceived benefits of the stroke caregiving experience. The purpose of this study was to determine the prevalence and stressfulness of stroke-related problems, and perceived benefits of caregiving, as reported by an epidemiologically derived sample of caregivers of stroke survivors. Methods— Stroke survivors (N=75) from a prospective epidemiological study of stroke, the REasons for Geographic and Racial Differences in Stroke (REGARDS) study, and their family caregivers were followed. Caregivers were given a comprehensive telephone interview 8 to 12 months after the stroke, using measures of stroke patient problems, caregiver appraisals of the stressfulness of these problems, and perceived benefits of caregiving. Results— Caregivers rated patient problems with mood (depression, loneliness and anxiety), memory, and physical care (bowel control), as the most stressful, but reported prevalence of these problems was lower than those reported previously in studies using clinical samples. Caregivers also reported many benefits from caregiving, with over 90% reporting that caregiving enabled them to appreciate life more. Conclusions— Epidemiologically based studies of stroke caregiving provide a unique picture of caregiver strains and benefits compared with clinical studies, which tend to over-represent more impaired patients. Support for caregivers should include interventions to aid their coping with highly stressful mood, physical care, and cognitive problems of stroke patients, but should also attend to perceived benefits of caregiving.

Sociodemographic, physical, and psychosocial characteristics of depressed and non-depressed family caregivers of stroke survivors

A variety of sociodemographic, physical, and psychosocial variables are linked to depressive behaviour in family caregivers. This study was conducted to determine the best predictors of caregiver depression at onset of the caregiver role among persons providing care to a stroke survivor. The relative contributions of stroke survivor and caregiver sociodemographic characteristics, as well as caregiver general health, physical functioning, social support, life satisfaction, preparedness, and reaction in the prediction of depression status, were examined. A correlational study of 52 primary family caregivers of individuals who had a cerebrovascular accident was conducted. General health and physical functioning scales from the SF-36, and measures of caregiver social support, life satisfaction, preparedness, and reaction were used. Caregiver depression was best predicted by lower life satisfaction, lower physical functioning, and a lack of tangible social support.A variety of sociodemographic, physical, and psychosocial variables are linked to depressive behaviour in family caregivers. This study was conducted to determine the best predictors of caregiver depression at onset of the caregiver role among persons providing care to a stroke survivor. The relative contributions of stroke survivor and caregiver sociodemographic characteristics, as well as caregiver general health, physical functioning, social support, life satisfaction, preparedness, and reaction in the prediction of depression status, were examined. A correlational study of 52 primary family caregivers of individuals who had a cerebrovascular accident was conducted. General health and physical functioning scales from the SF-36, and measures of caregiver social support, life satisfaction, preparedness, and reaction were used. Caregiver depression was best predicted by lower life satisfaction, lower physical functioning, and a lack of tangible social support.

Social support and self-care behaviors in individuals with heart failure: An integrative review

OBJECTIVES The purpose of this review is to examine and synthesize recent literature regarding the relationship between social support and self-care behaviors in individuals with heart failure (HF). BACKGROUND Self-care is an important factor in maintaining health and well-being for individuals with heart failure. Self-care behaviors are an integral component of self-care, and may be impacted by the disease process of heart failure. However, social support may positively influence an individuals self-care behaviors by assisting with activities associated with symptom management and evaluation, as well as activities associated with maintaining heart failure-related treatment regimens. This review will synthesize the current knowledge related to the influence of social support on heart failure self-care behaviors. DESIGN AND DATA SOURCES Using an integrative review method, a review of current empirical literature was conducted utilizing CINAHL, PsycARTICLES, and PubMed computerized databases for a period of January 2000 to December 2012. Thirteen studies were identified that met the inclusion criteria for review and investigated aspects of social support and heart failure self-care behaviors. RESULTS Social support appears to have a positive relationship on heart failure self-care behaviors, with an individuals family playing an important role in assisting individuals to maintain positive self-care behaviors. Social support appears to influence both heart failure self-care maintenance and management related behaviors by assisting with maintaining treatment regimens and by participating in the decision-making process related to the management of symptoms, as well as seeking treatment for symptoms of heart failure. CONCLUSIONS All four types of social support (i.e., emotional support, instrumental/tangible support, informational support, and appraisal support) are involved in the interactive process between an individuals social network (i.e., family and peers) and the individual with heart failure to maintain self-care behaviors that enhance health and well-being. However, more research is needed, specifically longitudinal and experimental designs, to determine the effectiveness of social support on self-care behaviors in individuals with heart failure, since this review revealed mostly cross-sectional, correlational studies which limits the ability to infer causality.

Living with Loss: The Stroke Family Caregiver

Stroke family caregiver self-losses are the focus of this study. The data presented here were collected as part of a larger study of stress, coping, and adaptation in stroke family caregiving. Information on personal losses was derivedfrom a series of intensive interviews over time with stroke caregivers involved in home careforfirst-time stroke survivors during the acute phase of recovery. Thematic analysis of audiotaped transcriptions indicated that family caregivers experienced four major self-losses in caringfor the stroke survivor in the home: loss of the familiar self, loss of the autonomous self, loss of the affiliative self, and loss of the knowing self. Implications for family-centered practice to address these four losses are discussed.

Race and Gender Differences in 1-Year Outcomes for Community-Dwelling Stroke Survivors With Family Caregivers

Background and Purpose— Previous research has reported worse outcomes after stroke for women and for African Americans, but few prospective population-based studies have systematically examined demographic differences on long-term stroke outcomes. Race and gender differences in 1-year stroke outcomes were examined using an epidemiologically derived sample of first-time stroke survivors from the national REasons for Geographic and Racial Differences in Stroke (REGARDS) study. Methods— Participants of REGARDS who reported a first-time stroke event during regular surveillance calls were interviewed by telephone and then completed an in-home evaluation approximately 1 year after the verified first-time stroke event (N=112). A primary family caregiver was also enrolled and interviewed for each stroke survivor. Measures from the in-home evaluation included previously validated stroke outcomes assessments of neurological deficits, functional impairments, and patient-reported effects of stroke in multiple domains. Results– African American stroke survivors were less likely to be living with their primary family caregivers than white participants. Analyses that controlled for age, education, and whether the stroke survivors lived with their primary family caregivers indicated that African Americans and women showed significantly greater deficits on multiple 1-year outcome measures compared to whites and men, respectively. Conclusions— Among community-dwelling stroke survivors with family caregivers, women and African Americans are at heightened risk for poor long-term outcomes 1 year after first-time stroke events. Rehabilitation services and public health policies aimed at enhancing stroke recovery rates should address these disparities in poststroke outcomes.

Informal Caregivers of Persons With HIV/AIDS: A Review and Analysis

Due to advanced antiretroviral treatments, persons with HIV/AIDS (PWH/As) live longer and experience various physical and cognitive impairments during the course of their disease. Often, informal caregivers assist PWH/As to manage these impairments and experience negative physical and psychosocial consequences from their role. This article reviews and analyzes published empirical studies that have examined physical and psychosocial outcomes in informal caregivers of PWH/As. Gaps and limitations of current research are discussed. Recommendations for future research and practice implications are also proposed.

Home care problems experienced by stroke survivors and their family caregivers.

The purpose of this qualitative study was to explore home care problems experienced by stroke survivors and their family caregivers after hospital discharge. Stroke survivors and family caregivers identified four major problems: loss of the stroke survivors familiar identity, managing activities of daily living, seeking and mobilizing tangible services, and obtaining emotional/social support. Implications for home healthcare nurses are discussed for each problem.

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.

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.