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.     

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.     

Caring for bereaved family caregivers: analyzing the context of care

Deaths from cancer will continue to rise with an increasing and aging population. Family caregivers of patients with cancer will face loss, grief, and bereavement as a result. As mandated by cancer and palliative care clinical practice guidelines, support for family caregivers continues through the processes of grief and bereavement to facilitate a positive transition through loss. To provide evidence-based nursing with this population, an analysis of their context of care was undertaken. Key health policies, characteristics of the healthcare delivery system, and the results of research with bereaved palliative caregivers are described. A model of effectiveness, efficiency, and equity is used to examine the situation of bereaved caregivers and to suggest research questions to fill the gaps in what is known about their needs and experience. Bereaved caregivers are at high risk for many distressing symptoms, including depression and sleeplessness, related to a range of complex variables, such as age, gender, social support, resources, and their experiences during caregiving. Current systems of support have not been adequate to meet the needs of this population and very little is known about the caregivers' quality of life, well-being, and health outcomes or how best to provide compassionate and effective nursing care.     

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.     

Predictors of postbereavement depressive symptomatology among family caregivers of cancer patients

The present study investigated two aspects of the sequelae of recent bereavement among family caregivers following the death of their cancer patient: (1) the extent to which depressive symptomatology among family caregivers measured following the death of their patient could be predicted by their levels of depressive symptomatology in the months prior to death, their physical health, the setting in which the patient's death occurred, patient age, gender of the caregiver, consanguinity, financial stress, social support from family and friends during the terminal stage, impact of caregiving activities on caregiver's daily schedule, caregiver optimism, perceived esteem attributed to caregiving, the time between the prebereavement assessment and death, and the time between death and the postbereavement assessment; and (2) whether these same explanatory variables could successfully differentiate those bereaved caregivers whose psychological health improved during the first 3 months following bereavement from those who did not improve. A sample of 114 family caregivers of cancer patients were surveyed for approximately 3 months before and 3 months after the death of their patient. A multivariate analysis of variance using the regression approach was undertaken to determine the primary predictors of postbereavement depressive symptomatology. In addition, a logistic regression analysis was used to attempt to predict those caregivers whose depressive symptomatology would improve during the postbereavement period. Critical factors in determining levels of postbereavement depressive symptomatology were caregiver optimism, prebereavement depressive symptomatology, and levels of social support from friends. Caregiver optimism and prebereavement depressive symptomatology were important in predicting whether caregivers' depressive symptomatology would improve or not. Physicians must be aware that if the social history of a patient reveals that he/she is anticipating or has recently experienced the loss of a family member for whom they were the primary caregiver, this information may be critical in determining whether the illness behavior exhibited by the patient has medical or psychosocial origins.     

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.     

Cultural variants of caregiving or the culture of caregiving

Research has shown that ethnic variations in caregiving exist. However, less attention has been given to the common experience of caregiving, across ethnic group affiliation. Semi-structured interviews with African American, Caucasian American, and Latino caregivers were conducted to understand the common experience of caregiving. Four major themes that characterized the caregiving experience across the three ethnic groups were identified. Participants described a tradition of family care, prevalent across the three ethnic groups. Familial conflicts, caregiving dissonance, and low levels of use of formal services also were prominent characteristics of the caregiving experience across the three ethnic groups. Results support the existence of a culture of caregiving prevalent across ethnic group affiliation.     

Experience of meaning in life in bereaved informal caregivers of palliative care patients

Purpose

Providing care for terminally ill family members places an enormous burden on informal caregivers. Meaning in life (MiL) may be a protective factor, but is jeopardised in caregiving and bereavement. This study evaluates the following questions: To what extent do bereaved informal caregivers of palliative care (PC) patients experience meaning in their lives? What differences emerge in carers compared to the general German population? How does MiL relate to well-being in former caregivers?

Methods

Eighty-four bereaved PC caregivers completed the Schedule for Meaning in Life Evaluation, the Brief Symptom Inventory, the WHOQOL-BREF, a single-item numerical rating scale of quality of life, and the Satisfaction with Life Scale. The experience of MiL of bereaved caregivers was compared to a representative population sample (n?=?977).

Results

The overall MiL fulfillment of bereaved caregivers (69 % female, age 55.5?±?12.9 years) was significantly lower than in the general population (68.5?±?19.2 vs. 83.3?±?14, p?<?.001), as was the overall importance ascribed to their meaning framework (76.6?±?13.6 vs. 85.6?±?12.3, p?<?.001). PC caregivers are far more likely to list friends, leisure, nature/animals, and altruism. Higher MiL was correlated with better life satisfaction and quality of life.

Conclusion

Coping with the loss of a loved one is associated with changes in MiL framework and considerably impairs a carer's experience of MiL fulfillment. Individual MiL is associated with well-being in PC caregivers during early bereavement. Specific interventions for carers targeted at meaning reconstruction during palliative care and bereavement are needed to help individuals regain a sense of meaning and purpose.     

Family experience caring for terminally ill patients with cancer in Hong Kong

In this study, 24 family caregivers of terminally ill patients participated in in-depth interviews regarding their experiences of giving care. The data were analyzed using grounded theory qualitative method. Commitment emerged as the precondition of the caregiving process. The caregivers did not perceive the work of caring as a burden. Rather, they felt that despite any personal hardships, what they were doing was important to their loved ones and therefore meaningful to them as caregivers. The components of commitment can be described as relational commitment, the act of showing love, and determination. The process of caregiving includes four phases: 1) holding onto hope for a miracle, 2) taking care, 3) preparing for death, and 4) adjusting to another phase of life. A patient-caregiver relationship, Confucian concepts of yi (appropriateness or rightness), and filial duty are reflected in the process of caregiving. Consequences of the process include finding meaning in life and peace of heart and mind. The emotional aspect of the caregiving experience can be described as an intense emotional experience filled with feelings of hope and hopelessness, guilt, fear, and regret. As a result of the caregiving experience, most participants found they have had a change of worldviews and treasure their lives. Findings show a significant need for interventions at each phase of the caregiving process designed to provide effective and culturally sensitive support and affirmation to family members as they care for their loved ones with terminal illnesses.     

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.     

The experience of respite during home-based family caregiving for persons with advanced cancer

The purpose of this qualitative interpretive study was to explore the experience of respite during home-based family caregiving for persons with advanced cancer. Fifteen caregivers were interviewed twice after the death of their family member. Three main themes emerged from the data analysis. First, caring for a dying family member at home is an emotionally intense, exhausting, and singular experience, set in a world apart from everyday life patterns. Second, the caregivers differentiated between cognitive breaks and physical (getting away from) breaks of respite. To achieve a cognitive break and yet remain within the caregiving environment was viewed as important, whereas the physical separation from it was significant only if it contributed in some meaningful way to the caregiving. Third, the meaning of respite is rooted in the desire to bring a measure of quality and normalcy to the life of the dying person. Respite means staying engaged in living life with the dying family member.     

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)]     

Meaning in stroke family caregiving: A literature review

Meaning plays an important role in stroke family caregiving. Understanding meaning facilitates the development of effective interventions that support stroke family caregivers. However, knowledge about this subject is fragmented and sparse. This review fills this knowledge gap by examining existing findings regarding meanings in stroke family caregiving. Specifically, a search of seven databases and a manual search produced a total of five articles for review. Embedded in the lived experience of caregivers, meanings in stroke family caregiving were interpreted as a physical, psychological, and social suffering; an obligation resulting from moral ethics, religion doctrines, others' expectations, and social norms; and a subjective choice based on love, hope, and a sense of reciprocity. However, the detailed process of how and when caregivers identify meaning in caregiving needs further exploration. To gain a full picture of meaning in caregiving, more studies should be conducted among stroke family caregivers from different cultural, economic, and social backgrounds.     

The vulnerability of family caregivers in relation to vulnerability as understood by nurses

In Finland, the care of older persons is shifting from institutional care to family care. Research shows that family caregivers experience their situation much in the same way as professional nurses. The nurses' experiences have been studied in terms of vulnerability, and the same perspective could deepen our understanding of family caregivers' experiences. The aim of this study was to gain knowledge of the vulnerability of older caregivers taking care of an ageing family member. The research questions were as follows: How do family caregivers experience vulnerability? How do their experiences relate to vulnerability as understood by nurses? The study was done as a secondary analysis of focus group interviews on the experiences and daily life of older family caregivers. Four caregivers had taken part in monthly interviews during a period of 10 months. The interviews were analysed by deductive and inductive content analysis. The results showed that the caregivers saw caregiving as part of being human. They experienced a variety of feelings and moral agony and were harmed physically, mentally and socially. They showed courage, protected themselves and recognised that being a caregiver also was a source of maturing and developing. These results corresponded with the nurses' understanding of vulnerability. Shame, the experience of duty as a burden, worry and loneliness were themes that were found only among the family caregivers. The use of a matrix may have restricted the analysis, but using it in an unconstrained way allowed for new themes to be created. The results indicate a common humanness and vulnerability in professional and family caregiving. They also show that family caregivers need more support both from society and professionals.     

Psychosocial Health Outcomes for Family Caregivers Following the First Year of Bereavement

The authors examined psychosocial outcomes following the first year of bereavement, for 51 family caregivers, including both spouses and offspring. Researchers assessed caregivers during palliative care and again during the second year of bereavement, for social functioning, depression, and distress. For all family caregivers, only depression scores declined significantly between T1 and T2 (p < 0.05). Caregiver relationship and gender did not make a difference in recovery. Results demonstrate that poor psychosocial health outcomes exist beyond the first year of bereavement. Early identification of these caregivers is necessary to provide mental health professionals the opportunity to intervene proactively.     

The needs of family caregivers of frail elders during the transition from hospital to home: a Taiwanese sample

The needs of family caregivers of frail elders during the transition from hospital to home: a Taiwanese sample This study explored the needs of family caregivers during the transition from hospital to home. Data from 37 face-to-face interviews with 16 caregivers before discharge and at 2 weeks and 1 month after discharge were subjected to constant comparative analysis. Findings revealed changes in family caregivers' needs during the discharge transition. While preparing to take caregiving responsibility, caregivers reported a need for various types of information. After the discharge, but before home caregiving settled into a pattern, they needed help with caregiving practices. After reaching a pattern for providing family care, caregivers frequently reported needs for continuous emotional support. These findings provide a basis for transitional care services such as discharge planning and home health care services.