The effect of spousal caregiving and bereavement on depressive symptoms.

The objective of the study was to determine whether spousal caregiving and bereavement increases caregiver depressive symptoms. We followed 1,967 community-dwelling elderly couples from the 1993 Health and Retirement Study (HRS) until 2002 (five bi-annual surveys) or death. Depressive symptoms were measured by the Center for Epidemiological Studies-Depression (CESD) scale. Adjusted depressive symptoms were higher for females for three of the four caregiving arrangements tested (as were unadjusted baseline levels). Depressive symptoms were lowest when neither spouse received caregiving (adjusted CESD of 2.97 for males; 3.44 for females, p<0.001). They were highest when females provided care to their husband with assistance from another caregiver, (4.01) compared to (3.37; p<0.001) when males so cared for their wife. A gender by caregiving arrangements interaction was not significant (p=0.13), showing no differential effect of caregiving on CESD by gender. Depressive symptoms peaked for bereaved spouses within three months of spousal death (4.67; p<0.001) but declined steadily to 2.75 (p<0.001) more than 15 months after death. Depressive symptoms initially increased for the community spouse after institutionalization of the care recipient, but later declined. We conclude that caregiving increases depressive symptoms in the caregiver, but does not have a differential effect by gender. Increases in depressive symptoms following bereavement are short-term.

A randomized controlled trial of the psychosocial impact of providing internet training and access to older adults.

The Internet (electronic mail and the World Wide Web) may provide new opportunities for communication that can help older adults avoid social isolation. This randomized controlled trial assessed the psychosocial impact of providing Internet access to older adults over a five-month period. One hundred volunteers from four congregate housing sites and two nursing facilities were randomly assigned to receive Internet training or to a wait list control group. The pre & post measures included the UCLA Loneliness scale, modified CES Depression scale, a measure of locus of control, computer attitudes, number of confidants, and overall quality of life. Participants received nine hours of small group training in six sessions over two weeks. Computers were available for continued use over five months and the trainer was available two hours/week for questions. At the end of the trial, 60% of the intervention group continued to use the Internet on a weekly basis. Although there was a trend toward decreased loneliness and depression in intervention subjects compared to controls, there were no statistically significant changes from baseline to the end of trial between groups. Among Internet users (n = 29) in the intervention group there were trends toward less loneliness, less depression, more positive attitudes toward computers, and more confidants than among intervention recipients who were not regular users (n = 19) of this technology. Most elderly participants in this trial learned to use the Internet and the majority continued to use it on a weekly basis. The psychosocial impact of Internet use in this sample suggested trends in a positive direction. Further research is needed to determine more precisely, which older adults, residing in which environmental contexts are more likely than others to benefit from this rapidly expanding information and communication link.

Preparing for the end of life: preferences of patients, families, physicians, and other care providers.

To examine patients', families', and health care providers' preferences regarding preparation for the end of life, attributes of preparation were generated in qualitative focus group discussions and subsequently tested for generalizability in a quantitative national survey. Respondents from all groups showed consensus on the importance of naming someone to make decisions, knowing what to expect about one's physical condition, having financial affairs in order, having treatment preferences in writing, and knowing that one's physician is comfortable talking about death and dying. Patients were more likely than physicians to want to plan funerals and know the timing of death and less likely than all other groups to want to discuss personal fears. Participants in care of dying patients agree overwhelmingly with the importance of preparation. However, significant barriers to preparation impede it from being a common part of clinical encounters. Further research and training are needed to ensure that the desire for greater preparation is translated into improved action toward preparation in medical practice.

Informal costs of dementia care: estimates from the National Longitudinal Caregiver Study.

OBJECTIVES: The purpose of the study was to examine on a national level the informal costs of caring for elderly community-dwelling male veterans with dementia by female caregivers and the relationships between informal costs and disease severity, and between informal costs and dementia problem behaviors. METHODS: Female primary caregivers were drawn from the first wave (N = 2043) of the National Longitudinal Caregiver Study, a survey of informal caregivers of elderly male veterans diagnosed with probable Alzheimer's disease or vascular dementia. Cost measures include the following four items: value of caregiving time, caregiver's lost income, out-of-pocket expenditures for formal caregiving services, and caregiver's excess health costs. Disease severity was indexed by the number of impairments in activities of daily living. Patient's problem behaviors were measured using the Behavior Rating Scale-Dementia. RESULTS: The annual cost of providing informal care to elderly community-dwelling veterans with dementia was estimated to be $18,385 per patient in 1998. The larger components of this cost are caregiving time ($6,295) and caregiver's lost earnings ($10,709). All aspects of costs increase with disease severity and problem behavior. Most of this cost increase derives from the increased caregiving time required for the provision of physical care. DISCUSSION: This study provides a comprehensive estimate of the excess costs that result from providing informal dementia care in the community. Unlike previous studies, our estimates excluded costs that caregivers would have incurred if they had not been caregivers. Therefore, results reported here reflect only costs due to informal dementia care.

Can nurses govern in a government agency?

A shared governance model was implemented within the nursing service of the Durham Veterans Affairs Medical Center in 1997. In 1999, members of the Nursing Quality/Staff Education/Research Council examined facility nurses' perceptions of governance to determine the degree to which the model had been implemented. Results of the study indicate that although imperatives at the organizational level were incompatible with three aspects of shared governance, there were three shared governance dimensions pertaining to basic nursing practice that reached or surpassed governance thresholds. This study highlights the potential of nursing management innovation within highly bureaucratic organizations.

Considerations of psychosocial illness phase in cancer survival.

Rarely are biomedical, clinical and psychosocial data considered simultaneously as influences on cancer patient outcomes. This study utilized medical record and interview data from 152 adult cancer patients with various tumor types in a model of survival estimation. Predictors included disease stage of the neoplasm (TNM stage), clinical functioning of the patient (Karnofsky performance status), and psychosocial demands of the disease course (psychosocial illness phase). Psychosocial illness phase captures developmental time phases of illness (i.e. 'crisis', 'early chronic', 'late chronic' and 'terminal'), essentially locating patients along the disease course relative to treatment and treatment response. The analysis utilized the Kaplan-Meier (product-limit) method to estimate stratum specific survival functions. Model comparisons employed the differences in the likelihood ratio chi-squares between nested models, and Cox proportional hazard models assisted in explaining the effects of the predictors on survival times. Results indicate that psychosocial illness phase makes an independent contribution to survival time estimation (p<0.05) when all three dimensions are considered simultaneously.

Factors considered important at the end of life by patients, family, physicians, and other care providers.

CONTEXT: A clear understanding of what patients, families, and health care practitioners view as important at the end of life is integral to the success of improving care of dying patients. Empirical evidence defining such factors, however, is lacking. OBJECTIVE: To determine the factors considered important at the end of life by patients, their families, physicians, and other care providers. DESIGN AND SETTING: Cross-sectional, stratified random national survey conducted in March-August 1999. PARTICIPANTS: Seriously ill patients (n = 340), recently bereaved family (n = 332), physicians (n = 361), and other care providers (nurses, social workers, chaplains, and hospice volunteers; n = 429). MAIN OUTCOME MEASURES: Importance of 44 attributes of quality at the end of life (5-point scale) and rankings of 9 major attributes, compared in the 4 groups. RESULTS: Twenty-six items consistently were rated as being important (>70% responding that item is important) across all 4 groups, including pain and symptom management, preparation for death, achieving a sense of completion, decisions about treatment preferences, and being treated as a "whole person." Eight items received strong importance ratings from patients but less from physicians (P<.001), including being mentally aware, having funeral arrangements planned, not being a burden, helping others, and coming to peace with God. Ten items had broad variation within as well as among the 4 groups, including decisions about life-sustaining treatments, dying at home, and talking about the meaning of death. Participants ranked freedom from pain most important and dying at home least important among 9 major attributes. CONCLUSIONS: Although pain and symptom management, communication with one's physician, preparation for death, and the opportunity to achieve a sense of completion are important to most, other factors important to quality at the end of life differ by role and by individual. Efforts to evaluate and improve patients' and families' experiences at the end of life must account for diverse perceptions of quality. JAMA. 2000;284:2476-2482.

Psychological impact of diagnosis and risk reduction among cancer survivors.

Life-threatening health events prompt psychological distress that may motivate individuals to reduce health risks. If so, interventions timed to take advantage of these 'teachable moments' could be particularly effective. To explore this association, early stage prostate and breast cancer patients were identified from a hospital-based tumor registry within 6 years of diagnosis. These patients (n=920) completed a mailed survey assessing the Horowitz impact of events scale, risk behaviors and readiness to change the behaviors. Breast cancer patients, younger patients and those reporting poor health status reported the greatest impact of the cancer diagnosis. Impact was inversely associated with time from diagnosis for prostate, but not breast cancer patients. Prostate patients who reported exercising regularly had lower impact scores than those who were not exercising (medians: 0.13 vs 0.56, respectively; p=0.02). Breast patients who were eating five or more fruits and vegetables reported lower impact scores than those who were not eating the recommended servings (0.75 vs 1.06, respectively; p=0.03). Breast patients who were non-smokers reported lower impact scores than smokers (0.88 vs 1.31, respectively; p=0. 02). Prospective studies are needed to understand the psychological impact of cancer diagnosis and how it might facilitate or impede the adoption of health promoting behaviors.

In search of a good death: observations of patients, families, and providers.

Despite a recent increase in the attention given to improving end-of-life care, our understanding of what constitutes a good death is surprisingly lacking. The purpose of this study was to gather descriptions of the components of a good death from patients, families, and providers through focus group discussions and in-depth interviews. Seventy-five participants-including physicians, nurses, social workers, chaplains, hospice volunteers, patients, and recently bereaved family members-were recruited from a university medical center, a Veterans Affairs medical center, and a community hospice. Participants identified six major components of a good death: pain and symptom management, clear decision making, preparation for death, completion, contributing to others, and affirmation of the whole person. The six themes are process-oriented attributes of a good death, and each has biomedical, psychological, social, and spiritual components. Physicians' discussions of a good death differed greatly from those of other groups. Physicians offered the most biomedical perspective, and patients, families, and other health care professionals defined a broad range of attributes integral to the quality of dying. Although there is no "right" way to die, these six themes may be used as a framework for understanding what participants tend to value at the end of life. Biomedical care is critical, but it is only a point of departure toward total end-of-life care. For patients and families, psychosocial and spiritual issues are as important as physiologic concerns.

Current health behaviors and readiness to pursue life-style changes among men and women diagnosed with early stage prostate and breast carcinomas.

BACKGROUND: Cancer survivors are at increased risk for developing secondary tumors, diabetes, osteoporosis, and cardiovascular disease, thus making them an important target population for health-related interventions. However, little is known regarding cancer survivors' behaviors and their interest in pursuing healthier diets, exercise, and smoking cessation. METHODS: A 65-item survey was mailed to 1667 patients diagnosed with early stage carcinoma of the breast or prostate that requested data regarding demographics, health behaviors, stage of readiness for smoking cessation, exercise, increased fruit and vegetable (F&V) consumption, and decreased fat intake, as well as interest in specific health programs and when, relative to diagnosis, these programs should be offered. RESULTS: Responses from 978 cancer survivors suggested that the overwhelming majority (85%) reported their health as good to excellent. The majority of respondents (55%) ate fewer than 5 daily servings of F&Vs, with prostate carcinoma patients reporting eating significantly fewer servings than patients with breast carcinoma (P < 0.001). In contrast, 69% of respondents reported adherence to a low fat diet, again with lower practice rates among prostate carcinoma patients than patients with breast carcinoma (P = 0.006). The majority of respondents (58%) reported routine exercise and 8% were current smokers. Significantly more breast carcinoma patients than prostate carcinoma patients were current smokers (P = 0.03). There was strong interest in health promotion programs across behaviors, and a fair amount of concordance between low fat dietary behaviors and exercise, as well as consumption of five daily servings of F&Vs. The majority of patients expressed a preference for programs that could be delivered via mailed brochure, with 57% of respondents indicating that programs should be initiated at the time of diagnosis or soon after (within 6 months). CONCLUSIONS: The results of the current study suggest that although many cancer survivors already practice healthy life-style behaviors, there is a substantial proportion who do not. Interventions especially are needed to increase daily F&V intake; however, given the fair degree of clustering between dietary and exercise behaviors, multiple risk factor interventions also may be warranted. Among cancer survivors, receptivity is high for health promotion programs, especially those that can be delivered by mail and soon after diagnosis.

New horizons in stroke rehabilitation research.

To promote health services research in stroke rehabilitation, we gathered information about stroke rehabilitation structures, processes, and outcomes (SPO), using extant databases and the Donabedian theoretical model of health services evaluation. We found that, in the United States, over S3.6 billion was spent by third-party payers in 1992 on rehabilitation, including stroke. Total disability-related costs now amount to over $170 billion per year. However, there are few studies identifying cost-effective stroke rehabilitation practices. Existing studies indicate that the organizational structure of rehabilitation influences stroke outcomes, but it is less clear exactly what organizational practices constitute optimal stroke rehabilitation. Data about specific, beneficial rehabilitation processes are scanty for stroke. There are a number of valid and reliable outcome measures pertinent to stroke rehabilitation health services research. We conclude that health services research in stroke rehabilitation is sparse. To be more informative, rehabilitation health services research should be guided by the SPO model.

Linking combat and physical health: the legacy of World War II in men's lives.

OBJECTIVE: This longitudinal study investigated the health effects of experiences during World War II among veterans by examining how well-being changed across the postwar years and varied by prewar individual attributes. METHOD: The subjects were men from the Stanford-Terman data archives who served in World War II and were born before 1925 (N = 328). Of these veterans, 236 were known to have been overseas during the war, and 64 had remained in the United States; 204 of the men who had been sent overseas experienced combat. Life history records were used to construct measures that described physical and emotional health over a range of time points and intervals in the postwar years. RESULTS: Exposure to combat predicted that a subject would experience physical decline or death during the postwar interval from 1945 to 1960, after the effects of self-reported physical health in 1945 and birth cohort were controlled. Rank and theater of engagement, however, were of little consequence, either additively or in interaction with combat. Self-worth before the war did not moderate the risk of physical decline or death that was associated with combat. CONCLUSIONS: Combat in World War II predicted that in the 15 years after the war, a subject would experience physical decline or death. There was no evidence that the effect of combat was more pronounced among men of different ranks, theaters of engagement, or levels of self-worth in 1940.

Impact of advance directive videotape on patient comprehension and treatment preferences.

OBJECTIVE: To examine the effects of an advance directive videotape on patient comprehension of advance directive concepts and preferences for resuscitation. DESIGN: Pilot study, randomized cohort trial. SETTING: Extended Care and Rehabilitation Center, Veterans Affairs Medical Center, Durham, NC. PARTICIPANTS: Thirty-six residents of the center; mean age, 69 years. INTERVENTIONS: Sixteen subjects observed an advance directive videotape, and 20 subjects observed a health-relative videotape. All subjects received written material and counseling on advance directives. MEASUREMENT: Structured interviews were conducted at three time points relative to the educational program (pretest, posttest, delayed posttest), measuring comprehension of two advance directive concepts (living will and cardiopulmonary resuscitation) and resuscitation preferences based on hypothetical clinical vignettes. Mean comprehension and mean resuscitation preference scores were derived for each time point. RESULTS: The mean comprehension score improved an average of 1.6 points for all subjects from pretest to delayed posttest (P < .001); however, score changes were not significantly different between the two video groups (P = .39). Mean resuscitation preference scores were stable over time, and there were no significant score differences between the two video groups. CONCLUSION: The advance directive videotape did not significantly affect resuscitation preferences or comprehension of selected advance directive concepts.

Resident smoking in long-term care facilities--policies and ethics.

OBJECTIVE: To characterize smoking behavior, facility policies related smoking, and administrators' views of smoking-related problems in Veterans Affairs nursing home care units nationwide. METHODS: An anonymous mail survey of long-term care facilities was administered to 106 nursing home supervisors at VA Medical Centers with nursing home care units. The response rate was 82%. RESULTS: Administrators from 106 VA nursing home units reported smoking rates ranging from 5% to 80% of long-term care residents, with an average of 22%. Half of the nursing homes had indoor smoking areas. Frequent complaints from nonsmokers about passive smoke exposure were reported in 23% of the nursing homes. The nursing administrators reported that patient safety was their greatest concern. Seventy- eight percent ranked health effects to the smokers themselves a "major concern," while 70% put health effects to exposed nonsmokers in that category. Smoking in the nursing home was described as a "right" by 59% of respondents and a "privilege" by 67%. Some individuals reported that smoking was both a right and a privilege. CONCLUSION: Smoking is relatively common among VA long-term care patients. The promotion of personal autonomy and individual resident rights stressed in the Omnibus Budget Reconciliation Act of 1987 may conflict with administrative concerns about the safety of nursing home smokers and those around them.

Caregiver time use: an outcome measure in clinical trial research on Alzheimer's disease.

OBJECTIVE: To assess whether unpaid caregiver time and paid professional time increase as cognitive impairment associated with Alzheimer's disease increases and to evaluate the utility of caregiver time as an additional outcome measure in clinical trial research of Alzheimer's disease. METHODS: This was a 24-week, double-blind, multicenter, parallel-group, placebo-controlled study conducted at 17 clinical outpatient sites by Hoechst-Roussel Pharmaceuticals Inc. A total of 449 patients older than 40 years with probable Alzheimer's disease of mild to moderate severity (criteria of the National Institute for Neurological and Communicative Disorders and Stroke--Alzheimer's Disease and Related Disorders Association) entered the study, and 284 completed both baseline and week 24 data collection. A total of 160 caregivers completed time allocation surveys at baseline and at 24 weeks. Patients with Alzheimer's disease received 150 mg/day and 225 mg/day Velnacrine maleate (parallel-group treatment) and placebo. Cognitive function was measured with use of cognitive and noncognitive subscales of the Alzheimer's Disease Assessment Scale (ADAS). Unpaid caregiver and paid professional time use were measured with use of the Caregiver Activities Time Survey (CATS). RESULTS: Unpaid caregiver time per day increased significantly with cognitive impairment at baseline as measured by the ADAS cognitive and noncognitive components. Velnacrine therapy significantly improved cognitive function relative to placebo, and this was associated with decreased unpaid caregiving time at trend levels. Specifically, caregivers of patients in the high-dose velnacrine group (225 mg/day) experienced a partial release from their time involvements, especially in the area of patient supervision, by an average of 3.3 hours per day. CONCLUSIONS: To our knowledge, this study represents the first time that the ADAS has been linked to a caregiver outcome. Results suggest that unpaid caregiver time allocation is sensitive to changes in cognitive function and therefore may be useful as an additional outcome measure in clinical trials of pharmaceutical interventions for Alzheimer's disease.

Human development in the context of aging and chronic illness: the role of attachment in Alzheimer's disease and stroke.

Does chronic illness in older people provide potentials for human development? To date, this question has not been adequately addressed by dynamic theorists of human development. In this article, two illness trajectories, Alzheimer's disease and stroke, are examined to illustrate emerging changes in human development over each course of illness and the increasing importance of attachment behavior among ill elders and their family members. It is argued that the phenomenon of attachment links ailing older people to their environment, and that attachment is vital if human development is to continue.

A summated score for the medication appropriateness index: development and assessment of clinimetric properties including content validity.

Inappropriate medication prescribing is an important problem in the elderly, but is difficult to measure. As part of a randomized controlled trial to evaluate the effectiveness of a pharmacist intervention among elderly veterans using many medications, we developed the Medication Appropriateness Index (MAI), which uses implicit criteria to measure elements of appropriate prescribing. This paper describes the development and validation of a weighting scheme used to produce a single summated MAI score per medication. Using this weighting scheme, two clinical pharmacists rated 105 medications prescribed to 10 elderly veterans from a general medicine clinic. The summated score demonstrated acceptable reliability (intraclass correlation co-efficient = 0.74). In addition, the summated MAI adequately reflected the putative heterogeneity in prescribing appropriateness among 1644 medications prescribed to 208 elderly veterans in the same general medicine clinic. These data support the content validity of the summated MAI. The MAI appears to be a relatively reliable, valid measure of prescribing appropriateness and may be useful for research studies, quality improvement programs, and patient care.

When war comes to men's lives: life-course patterns in family, work, and health.

Men generally come to military service at a time of youth. However, the Second World War expanded the period of service eligibility from age 18 to the late 30s. Each year of delay in entry promised a smaller return from military service (economic and job benefits) and a greater risk of life disruption and related costs. Using longitudinal data from the Stanford-Terman sample, the authors examine whether social disruptions resulting from late service entry increased the risk of adverse change in adult health. Apart from preservice factors, the authors found that the late-mobilized men were at greatest risk of negative trajectories on physical health. Work-life disadvantages account in part for this health effect. Pathways that link stress and physical decline are discussed in relation to social disruption.