Burden and well-being among a diverse sample of cancer, congestive heart failure, and chronic obstructive pulmonary disease caregivers.

CONTEXT: Three important causes of death in the U.S. (cancer, congestive heart failure, and chronic obstructive pulmonary disease) are preceded by long periods of declining health; often, family members provide most care for individuals who are living with serious illnesses and are at risk for impaired well-being. OBJECTIVES: To expand understanding of caregiver burden and psychosocial-spiritual outcomes among understudied groups of caregivers-cancer, congestive heart failure, and chronic obstructive pulmonary disease caregivers-by including differences by disease in a diverse population. METHODS: The present study included 139 caregiver/patient dyads. Independent variables included patient diagnosis and function; and caregiver demographics, and social and coping resources. Cross-sectional analyses examined distributions of these independent variables between diagnoses, and logistic regression examined correlates of caregiver burden, anxiety, depressive symptoms, and spiritual well-being. RESULTS: There were significant differences in patient functioning and caregiver demographics and socioeconomic status between diagnosis groups but few differences in caregiver burden or psychosocial-spiritual outcomes by diagnosis. The most robust social resources indicator of caregiver burden was desire for more help from friends and family. Anxious preoccupation coping style was robustly associated with caregiver psychosocial-spiritual outcomes. CONCLUSION: Caregiver resources, not patient diagnosis or illness severity, are the primary correlates associated with caregiver burden. Additionally, caregiver burden is not disease specific to those examined here, but it is rather a relatively universal experience that may be buffered by social resources and successful coping styles.

Health behaviors in patients and families with hereditary colorectal cancer.

It is estimated that 5 to 10% of all colorectal cancer (CRC) cases are attributed to a hereditary cause. The primary hereditary cancer syndromes that confer an increased risk for colorectal cancers are Lynch syndrome/hereditary nonpolyposis colorectal cancer (HNPCC) and familial adenomatous polyposis (FAP). Through genetic testing, health care providers can identify patients and families who carry gene mutations and subsequently are at a substantially greater risk for developing colorectal cancer than the general population. Genetic testing provides risk information not only about an individual patient, but also his or her biological relatives. A variety of risk-reduction behaviors (including screening, surgery, and health and lifestyle behaviors) have been examined in Lynch syndrome and FAP populations. The research indicates that screening behaviors are less than optimal, although the rates vary from study to study. Prophylactic colectomy is the primary course of treatment for individuals who test positive for a FAP mutation, but the results are inconclusive for cancer-unaffected Lynch syndrome mutation carriers. Although research suggests that the adoption of healthy lifestyles and behaviors (e.g., diet, physical activity, weight control, smoking cessation, limited alcohol consumption) could have a favorable impact on colon cancer burden, there is minimal data on how these behaviors may moderate cancer risk among those at risk of hereditary colon cancer. To date, we know very little about the actual health and lifestyle behaviors of those at risk of hereditary colon cancer. Genetic testing and counseling at risk individuals may resolve uncertainty about their personal and familial cancer risk and provide information to guide and personalize decisions about their future health care.

Comparing three life-limiting diseases: does diagnosis matter or is sick, sick?

CONTEXT: At advanced stages, cancer, congestive heart failure (CHF), and chronic obstructive pulmonary disease (COPD) produce high rates of hospitalization, disability, and annual mortality. Despite similar prognoses, patients with cancer often are treated differently than those with other illnesses, the former being seen as terminal vs. chronic. OBJECTIVES: The purpose of this study was to compare the functional capacity, emotional well-being, and quality of life of patients in three disease groups to assess whether diagnosis distinguishes differences in patient experience, and compare patients with cancer and noncancer diagnoses. METHODS: Baseline data from a cohort study of 210 patients who had an estimated 50% two-year mortality were analyzed. The patients had Stage IV breast, prostate, or colon cancer; Stage IIIb or IV lung cancer; New York Heart Association Stage III or IV CHF with a left ventricular ejection fraction of <40%; or COPD with hypercapnea (pC02>46) and at least one hospitalization or Emergency Department visit during the past year. Measures included the Rosow-Breslau Activities of Daily Living/Instrumental Activities of Daily Living tool, Profile of Mood States anxiety subscale, brief Centers for Epidemiologic Studies Depression Scale, and the Functional Assessment of Cancer Therapy-General quality-of-life instrument. Analyses included descriptive statistics, analysis of variance, and adjusted linear regression models. RESULTS: A majority of illness outcomes did not differ by diagnostic category. Functional status was associated with diagnosis, with CHF and COPD patients faring worse than those with cancer. Overall, illness experience was most significantly related to disease severity, demographics, and emotional and social well-being. CONCLUSION: Comparing patients with advanced cancer, CHF, and COPD, illness experience was more similar than different. Patients living with life-limiting illnesses other than cancer may benefit from whole-person services often extended to cancer patients.

The effect of spousal bereavement on cognitive functioning in a sample of older adults.

OBJECTIVE: This study examined the association between bereavement and cross-sectional differences in cognitive performance in a sample of older adults. METHODS: Secondary cross-sectional data analysis was conducted on 211 participants from the MacArthur Battery dataset. Participants completed several cognitive tasks 6-months post-loss. RESULTS: Hierarchical multiple regression results suggested that bereavement status was not associated with cognitive performance. However, the effect of bereavement on memory (immediate and delayed story recall) performance was moderated by age and gender where the younger participants and men who were bereaved performed worse compared to their non-bereaved counterparts. DISCUSSION: Our results support the finding that bereavement is associated with poorer memory performance within certain subgroups (i.e., men and younger participants). We discuss findings in light of theories of stress and cognitive aging.

Health and lifestyle behaviors among persons at risk of Lynch syndrome.

OBJECTIVE: The aim of this study was to evaluate health behaviors among patients with colorectal cancer (CRC) and their at-risk relatives prior to undergoing genetic counseling and testing for Lynch syndrome and to examine associations between health risk behaviors and specific demographic and psychological variables. METHODS: Participants included patients with CRC (n = 319) and their cancer-unaffected relatives (n = 110) who were enrolled in studies regarding Lynch syndrome genetic testing. Prior to undergoing genetic counseling or testing, participants completed a questionnaire including measures of demographic characteristics, health behaviors, cancer screening practices (Pap test, clinical breast exam, and mammogram), and psychological distress. RESULTS: Unaffected participants scored higher on a risk behavior index (RBI) than patients with CRC (1.7 (SD = 1.0) vs. 1.4 (SD = .09); p < .01). All female participants underwent cancer screening at rates similar to national data. Higher RBI scores were associated with being male, having less education, and age less than 50-years. CONCLUSIONS: We identified several health behaviors for potential intervention, including smoking, alcohol use, and diet. Genetic counseling offers a promising avenue for education and risk behavior reduction in persons at increased risk for cancer due to a familial or genetic predisposition, and a teachable moment to introduce lifestyle modifications.

Predictors of well-being in bereaved former hospice caregivers: the role of caregiving stressors, appraisals, and social resources.

OBJECTIVE: The current literature on caregiving and bereavement indicates that the relationship between these two common life events is complex and needs to be further studied in order to gain a more comprehensive understanding of their interaction. METHODS: In the current project, 50 spouses of hospice patients with end-stage lung cancer or dementia were assessed while caregiving and at an average of 4 months after the death on a variety of measures, including caregiving stressors, appraisals, social resources, and well-being. A stress process model was utilized in order to examine which preloss factors were associated with postloss depression, life satisfaction, and grief. RESULTS: Our results indicated that patient diagnosis (cancer or dementia) and caregiver appraisals (stressfulness of functional impairment and positive aspects of caregiving) were not predictors on any of our well-being outcomes. However, fewer months caregiving was a significant predictor of both higher depression and grief postloss. Additionally, lower levels of social activities, smaller social networks, and lower satisfaction with social support were significantly associated with higher postloss depression. SIGNIFICANCE OF RESULTS: Results support both the resource depletion and anticipatory grief hypotheses and suggest that short-term bereavement outcomes are different than factors that predict well-being while caregiving. Future studies should address whether long-term bereavement outcomes differ by baseline caregiving characteristics to guide intervention research.

Predictors of depression and life satisfaction among spousal caregivers in hospice: application of a stress process model.

Using a stress process model, risk factors (caregiving stressors, caregiver health, and negative social interactions) and protective factors (caregiving appraisals and social resources) were examined as predictors of family caregiver well-being (depression and life satisfaction). Eighty spousal caregivers of hospice patients with dementia or lung cancer completed structured interviews and self-report measures assessing components of the stress process model. Results suggest that objective measures of patient impairment or amount of care provided are not strong predictors of caregiver depression or life satisfaction. Female gender, caregiver health problems, and negative social interactions were risk factors for poorer caregiver well-being. Caregivers who subjectively appraised caregiving tasks as less stressful, who found meaning and subjective benefits from caregiving, and with more social resources had lower depression and higher life satisfaction, even after controlling for patient impairment and caregiver appraisal variables. Regression models accounted for 42% of variance in caregiver depression and 52% of variance in caregiver life satisfaction. Counseling for hospice family caregivers could utilize the stress process framework, and pay particular attention to finding meaning or subjective benefits from caregiving, and remaining active in social roles. Further research providing evidence on caregiver risk and protective factors could improve the conceptual and empirical basis for psychosocial interventions for hospice family caregivers.