The influence of end-of-life cancer care on caregivers

The purpose of this secondary analysis was to glean from prospective data whether those caring for elderly family members recently diagnosed with cancer who ultimately died reported different caregiver depressive symptomatology and burden than caregivers of those who survived. Findings from interviews with 618 caregivers revealed that caregiver depressive symptomatology differed based on family members' survival status, and spousal caregivers experienced greater burden when a family member was near death than did non-spousal caregivers. Family member symptoms and limitations in daily living, as well as caregiver health status, age, and employment, were associated with caregiver depressive symptomatology and burden; however, these associations had no interaction with family member survival status.     

Correlates of health status for family caregivers in bereavement

The purpose of this retrospective cohort study was to identify aspects of caregiving associated with health status among family caregivers in bereavement. Study participants included 151 family caregivers of terminally ill patients who had died, on average, 294 days prior to the study telephone interview. The interview covered two main areas: patient characteristics and caregiver characteristics. Multivariate linear regressions revealed that as the age of the care recipient (regression coefficient [b] = -0.32; 95% confidence interval [CI] -0.48,-0.15) and caregiver (b = -0.14; 95% CI = -0.25, -0.02) increased, caregivers experienced a decline in their physical health during bereavement. Furthermore, caregivers who reported that caregiving interrupted their usual activities (b = -5.97; 95% CI = -9.79, -2.15) had a decline in physical health during bereavement. A poorer mental health status during bereavement was seen in caregivers who reported poor physical health during caregiving (b = -4.31; 95% CI = -8.17, -0.45); and that they received insufficient family support in caregiving (b = -6.01; 95% CI = -9.75, -2.27). It was also revealed that a home death was associated with higher mental health of the caregiver (b = 3.55; 95% CI = 0.26, 6.84). The practice implications of these findings are discussed in this paper.     

Pessimism and optimism as early warning signs for compromised health for caregivers of patients with Parkinson's disease

BACKGROUND: Although pessimism and optimism are associated with health-related outcomes, the long-term effects of pessimism and optimism in the caregiving process are understudied, and little is known about their role in health changes over time. OBJECTIVE: To determine whether pessimism and optimism can be used as early warning signs for negative changes in caregiver depressive symptoms and physical health over a 10-year period. METHODS: Multilevel modeling was used to examine longitudinal data from 311 spouse caregivers of individuals with Parkinson's disease, with data points at baseline, Year 2, and Year 10. Measures included the Life Orientation Test, the Center for Epidemiological Studies-Depression Scale, and the SF-36 Health Survey physical functioning scale. RESULTS: Caregiver pessimism early in the caregiver role was found to be a warning sign for poor current and future caregiver health. High baseline pessimism signaled high levels of baseline depressive symptoms and poor physical health, as well as a faster decline in health over the 10-year study. Optimism played a role in predicting baseline depressive symptoms, although the magnitude of its beneficial contribution was not as great as the deleterious effects of pessimism. CONCLUSIONS: Nurses and clinicians have a unique opportunity to detect and intervene with caregivers who show high levels of pessimism early in the caregiving trajectory.     

Factors associated with caregiver burden in heart failure family caregivers

Fifty caregivers and 41 heart failure patients participated in a study examining the association of caregiver characteristics and the caregiving environment on caregiver burden. Using a cross-sectional design, caregivers were interviewed face-to-face using a caregiver characteristic/demographic tool designed for this study, the Centers for Epidemiological Studies Short Depression Scale, the Caregiver Reaction Assessment questionnaire, and the New York Heart Association Functional Classification Guide to obtain the caregiver's perception of patient disease severity. Patient medical records were assessed following caregiver interviews for patient demographics, comorbidities, and ejection fraction percentages. Significantly higher levels of burden were found among Caucasian caregivers, those caring for other relatives besides the patient, unemployed caregivers, and single- versus two-family caregivers (respite caregiving). Fifty-one percent of the variance in caregiver burden was accounted for by the variables caregiver advanced age, higher caregiver hours, more caregiver physical health problems, higher levels of caregiver depressive symptoms, and more patient comorbidities. This article concludes with implications for nursing practice and future research.     

A randomized, controlled trial of a patient/caregiver symptom control intervention: effects on depressive symptomatology of caregivers of cancer patients

In this study, we investigated whether a clinical nursing intervention focusing on teaching family caregivers and their cancer patients skills to better manage the patients' symptoms would reduce caregiver depressive symptomatology. Two hundred thirty-seven patient/caregiver dyads were recruited for the study. These dyads were randomized into either the 10-contact, 20-week experimental intervention group (n=118), which focused on assisting the patient and caregiver in managing patient symptoms and reducing emotional distress, or to a conventional care control group (n=119). A longitudinal random effects regression analysis did not indicate that the clinical nursing intervention was effective in decreasing caregiver depression over the 20-week course of the study. The relationship of the intervention to caregiver depressive symptomatology seems to be a complex one. We recommend further research to explore whether a lengthened intervention and/or delayed follow-up might reveal delayed positive effects of such interventions.     

The Experience of Bereavement in Caregivers of Family Members With Alzheimer's Disease

This paper reports an analysis of the bereavement experience described by 13 caregivers of family members with Alzheimer's disease. Utilizing the constant comparative method, four patterns of experience and two major concepts describing bereavement were identified. Two stages of bereavement are described: The first during caregiving and the second following the death of the family member. Findings support the need for professional intervention for caregivers during the caregiving period, which may also be a time of intense bereavement.     

Preparing family caregivers for death and bereavement. Insights from caregivers of terminally ill patients

Many family caregivers are unprepared for the death of their loved one and may suffer from worse mental health as a result. We therefore sought to determine the factors that family caregivers believe are important to preparing for death and bereavement. Focus groups and ethnographic interviews were conducted with 33 family caregivers (bereaved or current) of terminally ill patients. The interviews were audiotaped, transcribed, and analyzed using the constant comparative method. Life experiences such as the duration of caregiving/illness, advance care planning, previous experiences with caregiving or death, and medical sophistication all impacted preparedness, or the degree to which a caregiver is ready for the death and bereavement. Regardless of life experiences, however, all caregivers reported medical, practical, psychosocial, and religious/spiritual uncertainty. Because uncertainty was multidimensional, caregivers often needed more than prognostic information in order to prepare. Communication was the primary mechanism used to manage uncertainty. Good communication included clear, reliable information, combined with relationship-centered care from health care providers. Finally, preparedness had cognitive, affective, and behavioral dimensions. To prepare, some caregivers needed information tailored to their uncertainty (cognitive), others needed to "mentally" or "emotionally" prepare (affective), and still others had important tasks to complete (behavioral). In order to better prepare family caregivers for the death of a loved one, health care providers must develop a trusting relationship with caregivers, provide them with reliable information tailored to their uncertainty, and allow time for caregivers to process the information and complete important tasks.     

The bereavement experience following home-based family caregiving for persons with advanced cancer

The purpose of this qualitative interpretive study was to explore the experience of bereavement following home-based family caregiving for persons with advanced cancer. The research question addressed by this research was: How do family caregivers of patients with advanced cancer perceive the effects of home-based caregiving on their bereavement? Fifteen caregivers were retrospectively interviewed twice after the death of their family member. Caregivers reported both positive (e.g., feelings of accomplishment, improved family relationships) and negative (e.g., haunting images, feelings of failure) outcomes that they attributed to having cared for their family member. Overall positive outcomes predominated and bereaved family members reported satisfaction with having provided care for their loved one who had died.     

Personal communications

The purpose of the current study was to document the course and 1-month postbereavement predictors of both positive and negative psychological states in bereaved gay male caregivers for 3 years following the death of their partners. The results show that although the patterns of postbereavement depressive mood and positive psychological states were similar, some of their predictors differed. Given that the processes that produce positive psychological states are not the same as those that produce negative states, our findings support the inclusion of both positive and negative psychological states in studies of postbereavement adjustment.     

Do positive psychological states shed light on recovery from bereavement? Findings from a 3-year longitudinal study

The purpose of the current study was to document the course and 1-month postbereavement predictors of both positive and negative psychological states in bereaved gay male caregivers for 3 years following the death of their partners. The results show that although the patterns of postbereavement depressive mood and positive psychological states were similar, some of their predictors differed. Given that the processes that produce positive psychological states are not the same as those that produce negative states, our findings support the inclusion of both positive and negative psychological states in studies of postbereavement adjustment.     

Differences in family caregiver outcomes by their level of involvement in discharge planning.

Family caregivers play vital roles in assisting elders after they are released from the hospital. Although health care professionals advocate involving family caregivers in discharge planning for elders, little is known about the extent to which this involvement benefits or jeopardizes the caregiver's health and their perceptions of the caregiving experience. The purpose of this study was to determine whether the level of family caregiver involvement in discharge planning for an elder made a difference in caregiver health, discharge planning satisfaction, perception of care continuity, preparedness to assist the elder, and acceptance of the caregiving role 2 weeks and 2 months postdischarge. The sample consisted of 130 family caregivers for elders hospitalized with heart failure. Telephone interviews were conducted 2 weeks and 2 months postdischarge. The findings indicated that family caregivers who reported more involvement in discharge planning had significantly higher scores on satisfaction, feelings of preparedness, and perception of care continuity 2 weeks following the elder's hospitalization than those who reported little or no involvement in planning. Caregivers who reported more involvement in planning also were more accepting of the caregiving role. At 2 months postdischarge, caregivers who reported more involvement in discharge planning reported better health and more acceptance of the caregiving role than those who had little or no involvement in planning.     

A model of caregiving through the end of life: seeking normal

Informal family caregivers provide significant contributions to end-of-life (EOL) care. A theoretical model of the phases and transitions of EOL caregiving was explicated using grounded theory methods to explore the experiences of 46 family caregivers of adults suffering a variety of life-limiting conditions. The derived model describes four phases of caregiving spanning prediagnosis through bereavement. Phases are demarcated by key transitions experienced when the illness progression manifestly challenges the established "steady state" achieved by the caregiver. The basic social process was defined as "seeking normal" as caregivers sought reliable patterns of everyday life while meeting the demands of caregiving. Understanding the progression of EOL caregiving enables clinicians to better support family caregivers as both coproviders and corecipients of care.     

Mutuality and preparedness as predictors of caregiver role strain

Data from 78 older persons and their family caregivers were obtained at 6 weeks and 9 months after hospital discharge. Hierarchical multiple regression was used to determine whether mutuality and preparedness for caregiving were related to lower levels of caregiver role strain. The results indicated that, after controlling for five other variables commonly found to be related to caregiver role strain, mutuality and preparedness ameliorated some but not all aspects of role strain.     

Caregiver Discourse: Perceptions of Illness-Related Dialogue

Interacting with terminally-ill patients is significantly stressful for caregiving families. To date, few studies have examined how caregivers perceive their communication with dying family members. As such, the present investigation was undertaken. A sample of 10 family caregivers was utilized for the study; informants had to be the spouse or child of the patient, having provided the majority of care during the illness period. Semi-structured interviews were employed by the investigator to collect data on the communicative experiences of these caregivers; they were asked to describe their thoughts and interactional experiences with specific reference to the following: (1) the inevitability of the patient’s death, (2) the patient’s preferred courses of action, (3) levels of family interaction, (4) patient denial, (5) previous patterns of discourse, and (6) bereavement. All interviews were audio-recorded, transcribed verbatim, and analyzed using a two-tier system incorporating aspects of content analysis methodology. Results indicate that caregivers experience difficulty communicating with their patients and with other family members. Suggestions for developing effective, appropriate, and sensitive communication training programs for terminally-ill patients and their caregiving families are provided. [Single or multiple copies of this article are available from The Haworth Document Delivery Service: 1-800-342-9678, 9:00?a.m. - 5:00?p.m. (EST)]     

Impact of caregiving on Finnish family caregivers

Scand J Caring Sci; 2012; 26; 211–218 Impact of caregiving on Finnish family caregivers Background: Numerous studies have examined the caregiver burden that family caregivers often experience. However, caregiving situations may also include positive elements that have recently received greater research attention. Aim: The aim was to examine the positive value and negative impact of caregiving for the family caregiver. Method: Caregiving experience was measured with the modified 15‐item Carers of Older People in Europe Index. Surveys were completed by family caregivers at the baseline and after 6 months. Results: At the baseline, most family caregivers thought that caregiving was worthwhile, had a good relationship with the person they cared for and coped well as a caregiver. Fifty‐five per cent of the respondents did not feel trapped in their caregiver role, though a third did, and a majority found caregiving to be too demanding. Most perceived themselves to be supported by their family, while 40% did not feel supported by health and social services. During the 6‐month study period, the negative impact score declined, and the scores for positive value and quality of support improved. The care recipient’s management at home (p < 0.001) was the single best predictor of the negative impact on the family caregiver; the family caregiver’s older age (p < 0.01) best predicted the quality of support; and the family caregiver’s good relationship with the care recipient (p < 0.01) best predicted the positive value of caregiving. Conclusions: The study indicated that even if the health status of the care recipient dramatically worsened, the family caregiver’s experiences of caregiving became more positive. This is because family caregiving was perceived to be worthwhile, most family caregivers had a close relationship with the person they cared for and they received support from their family. Interventions that focus on family caregivers’ positive experiences of caregiving would be important in protecting them from the negative consequences of caregiving.     

Family caregivers need support with heart failure patients

Millions of family members are serving as caregivers for patients with heart failure and the numbers will continue to rise. It appears that caregivers desire to be involved in the patient's care even when the caregiving tasks average 8 hours per day. Burden, stress, and depression have been found to be significantly associated with the caregiving role in this population. Decreasing any negative aspects of caregiving should be a priority. Alarmingly, caregivers have reported being ignored or made to feel like an outsider by health care providers. Nurses are in a pivotal position to improve patient and caregiver outcomes by including the family caregivers of heart failure patients in all aspects of care and in promoting the well being of the caregiver. This article will highlight the importance of social support on patient and caregiver outcomes, and second, review studies on family caregiving among heart failure patients. Recommendations for nursing practice and further research will be discussed.     

Social support and strain of family caregivers of older adults

To assess the direct effects and interactive models of social support, caregivers to functionally impaired older adults were identified by hospital personnel. Within a week of referral, family caregivers were interviewed in the home about strain, depressive symptomatology, caregiving appraisal, informal social support, and coping. Caregiving appraisal significantly explained strain and depressive symptomatology. The interaction of social support with strain did not moderate or lessen depressive symptomatology. These findings suggest that nursing continue to examine the effect of home health care on strain and depressive symptomatology of caregivers of older adults.     

The Impact of Supporting Family Caregivers Before Bereavement on Outcomes After Bereavement: Adequacy of End-of-Life Support and Achievement of Preferred Place of Death

Context

The investigation of the situation of bereaved family caregivers following caregiving during the end-of-life phase of illness has not received enough attention.

End-of-life caregiving: what helps family caregivers cope?

Patient care needs and patient quality-of-life (QOL) deficits can be significant stressors for family caregivers. Often, greater caregiving demands and poorer patient QOL are associated with greater caregiver strain. However, caregiver coping behavior can attenuate the effect of caregiving stressors on caregiver strain. This study examined the relationships among caregiving stressors, coping, and caregiver strain in a sample of 31 family caregivers and their terminally ill loved ones enrolled in home hospice programs. Caregiving stressors included patient activity of daily living (ADL) needs and dimensions of patient QOL. Coping was measured with the Family Crisis Personal Evaluation Scale (F-COPES), which has five coping scales: acquiring social support, reframing, seeking spiritual support, passive appraisal, and mobilizing the family to acquire and accept help. Caregiver strain was significantly correlated with patient ADL needs (r = 0.51), patient psychological distress (r = 0.42), and patient existential QOL (r = -0.65). Regression equations indicated that reframing coping lessened caregiver strain. Caregivers who accepted their loved one's illness, redefined illness-related problems in a more manageable way, and felt capable of solving illness-related problems had less caregiver strain than caregivers who used less of a reframing coping style.