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.     

Evaluation of a psycho-educational group programme for family caregivers in home-based palliative care

BACKGROUND: Family caregivers are often responsible for providing significant support to relatives who require palliative care at home. However, evidence suggests that family caregivers have limited information, resources or support to prepare them for such a role. Furthermore, family caregiving can be associated with negative physical, financial and psychosocial outcomes. PURPOSE: This project sought to examine the utility of a group family caregiver psycho-educational programme focused on preparing primary family caregivers for the role of supporting a relative with advanced cancer at home. METHOD: The education programme consisted of three consecutive weekly sessions presented in a group format, conducted at six home-based palliative care services across metropolitan and regional Victoria (Australia). Participating caregivers were required to complete a set of self-report questionnaires measuring caregiver competence, preparedness, optimism, rewards, social support, burden and information needs, at three time points: commencement of the programme (T1), upon completion (T2) and 2 weeks later (T3). Caregivers were also asked to report on the relevance, acceptability and content of the programme, as well as any barriers to access. RESULTS: Sixteen education programmes were conducted, with 74 caregivers attending the first session. Forty-four caregivers completed all three data collection sets. Following the intervention, a significant positive effect was found for the following outcomes: preparedness for the caring role, caregiving competence, caregiving rewards and having information needs met from T1 to T2. These improvements were maintained at follow-up (T3). Feedback on the individual sessions and entire programme was favourable and the overwhelming majority of participants reported that the programme had a positive impact on their lives. CONCLUSIONS: This study demonstrated that a group education programme to prepare family caregivers for the role of supporting a dying relative at home was accessible, applicable and effective.     

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.     

Cancer Caregivers’ Prognostic and End-of-Life Communication Needs and Experiences and their Impact

ContextFamily caregivers of patients with advanced cancer are integrally involved in communications regarding prognosis and end-of-life (EOL) planning and care. Yet little research has examined caregivers’ communication experiences or the impact of these experiences on patients and caregivers at EOL.ObjectivesInvestigate cancer caregivers’ communication experiences and potential impact on patient and caregiver outcomes.MethodsSemistructured interviews with bereaved family cancer caregivers (N=19) about their communication needs and experiences as their loved one approached EOL and died. Audiotaped interviews were transcribed and thematically analyzed for communication-related themes.ResultsCaregivers described fulfilling many important communication roles including information gathering and sharing, advocating, and facilitating—often coordinating communication with multiple partners (e.g., patient, family, oncology team, hospital team). Caregivers reported that, among the many topics they communicated about, prognosis and EOL were the most consequential and challenging. These challenges arose for several reasons including caregivers’ and patients' discordant communication needs, limited opportunity for caregivers to satisfy their personal communication needs, uncertainty regarding their communication needs and responsibilities, and feeling unacknowledged by the care team. These challenges negatively impacted caregivers’ abilities to satisfy their patient-related communication responsibilities, which shaped many outcomes including end-of-life decisions, care satisfaction, and bereavement.ConclusionCaregivers often facilitate essential communication for patients with advanced cancers yet face challenges successfully fulfilling their own and patients’ communication needs, particularly surrounding prognostic and end-of-life conversations. Future research and interventions should explore strategies to help caregivers navigate uncertainty, create space to ask sensitive questions, and facilitate patient-caregiver discussions about differing informational needs.     

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.     

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.     

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.     

The emotions and coping strategies of caregivers of family members with a terminal cancer

This study documents the emotional experiences and coping strategies of a group of caregivers as they move from the diagnosis of a close family member with terminal cancer through the stages of caring and post bereavement. Supportive evidence, matching that of previous literature, was gathered regarding the impact of such care, but additional findings counter the notion of "burden" by revealing that strong positive emotions were experienced by these caregivers regarding the opportunity given to them to express their love through care. By contrast and post bereavement, however, intense grief was reported. There appeared to be a complete lack of emotional support throughout from health professionals, particularly in the bereavement phase when need is very apparent.     

Caregiver respite: coming back after being away

Respite services are seen as one key formal support intervention mitigating the negative consequences of family caregiving. The purpose of this paper is to examine how the caregivers' respite experience influenced their return to the responsibilities of caring for their family members. The discussion is based on a qualitative interpretative study with 20 caregivers exploring the meaning of respite to family caregivers of persons with dementia. Although the beneficial effect of the emotional and physical refreshment and renewal was evident throughout, there were notable variations in how caregivers experienced their return to caregiver responsibilities. Some experienced short-term despondency and feelings of 'let-down' while others felt guilty and emotionally devastated when they returned. Three factors emerged which related to the differential caregiver experiences: the amount of time and quality of the respite interval; the nature and quality of the respite help that was used for the dependent family member; and the condition of their dementia family member when the caregiver resumed the caregiver role. Clinicians must recognize that these factors strongly influence how the responsibilities of caregiving are resumed. Researchers must explore for additional factors which detract from the anticipated positive effects of the caregiver respite experience. Clarification of these factors can provide guidance to service providers to develop respite services that are more attuned to the caregivers' perceptions of benefit for themselves and for their dependent family members.     

Sources of strength perceived by females caring for relatives diagnosed with cancer: an exploratory study from India

Goals of work The aim of the study was to explore sources of strength in the process of caregiving from the perspectives of Indian women caring for relatives suffering from cancer. In addition, it aimed at exploring self-reported occurrence of positive moments and personal changes experienced during the care-giving process. Materials and methods Twenty female caregivers participated in two to four interview sessions. The average caregiver was about 40 years old. Spouses and children as caregivers had the highest representation in the sample. The care recipients had heterogeneous cancer diagnoses and were undergoing active treatment. Main results Religious beliefs and practices and positive appraisal of the caregiver role in terms of “value” emerged as the most frequently cited intrapersonal sources of strengths. Religious beliefs and practices were linked with positive appraisals of care-giving demands and experience of hope. The participants also described several interpersonal sources of strengths, e.g., family, medical fraternity, and care recipients themselves. The narratives of the participants indicated the occurrence of positive moments as well as perceptions of positive personal changes during the care-giving process. Conclusions The findings have implications for further research on positive aspects of caregiving as well as for development of intervention components that may help caregivers maintain and enhance their well-being.     

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.     

Exploration of factors related to direct care and outcomes of caregiving. Caregivers of terminally ill older persons.

The purpose of this study was to explore factors related to the amount of direct care and outcomes of caregiving experienced by family members of terminally ill older persons using secondary analysis. A total of 55 caregivers whose care receivers were aged greater than or equal to 65 years were selected from Kirschling's (1988) hospice sample. The majority of caregivers were female (75%) and the spouse of the care receiver (66%). The duration of caregiving ranged from 1 to 180 months. Most care receivers were diagnosed with cancer (84%) and had been ill for 2-360 months (mean = 30.2). The mean length of time in hospice for care receivers was 2.4 months. Caregivers most frequently provided little extra tasks that were least difficult, least upsetting, and easier to provide. Behavioral problem tasks were least frequently provided but were reported as the most difficult, tiring, upsetting, and hardest to provide. Caregivers whose care receivers had been in hospice for greater than 34 days reported having to provide more communication tasks than caregivers whose ill older family members had been in hospice less than 34 days. Long-term caregivers (providing care for greater than 9 months) whose care receivers had been in hospice for greater than 34 days provided significantly fewer personal care tasks than short-term caregivers. Finally, there were no significant effects for duration of caregiving and length of time in hospice on outcomes of caregiving.     

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.     

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.     

The caregiving experience: how much do health professionals understand?

Legal, social and economic factors have changed the delivery of care to people who have a mental disorder. Many of these people are now treated in the community and they live with or in close proximity to their family. The aim of this paper is to provide health professionals with an insight into the experience of being a caregiver to a person with a person with a mental disorder. For these families caregiving becomes an integral part of everyday life. Positive outcomes for both the caregiver and the ill family member are more likely to occur when effective levels of collaboration exist between health professionals and caregivers. Collaboration is enhanced when caregivers and health professionals value each other's contribution to the ill family member's care. Often the burden, stress, and socio-economic effects on the family caring for a person with mental illness is not sufficiently appreciated and further increases this burden. A review of the literature from the caregiver's perception is presented. An increased understanding of the caregiving experience will enable health professionals to develop and implement strategies that facilitate positive outcomes for the caregiver and the ill family member.     

Responsibilities and Reactions of Family Caregivers of Patients Dependent on Total Parenteral Nutrition at Home

Abstract This prospective study assessed the caregiving responsibilities and reactions of family members who provide home care to a relative who is dependent on total parenteral nutrition (TPN). A short, semistructured interview based on the Roy adaptation model was used to gather data about the caregiving experiences of 20 relatives of adult TPN-dependent patients. Data were content analyzed, and frequently occurring themes identified. Results indicated that altered family responsibilities as well as negative and positive psychologic reactions to caregiving do occur. The interviews suggested that caregivers master TPN technology but make little use of assistance from extended family or professionals. Although depression and fatigue were reported as common, these family members felt capable and successful in their caregiving roles. Further longitudinal research with larger samples should allow for comparison of caregivers on demographic differnces, stress, and other variables pertinent to managing complex home care.     

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)]