Impact of caregiving on families of dying cancer patients

Advanced cancer imposes numerous adverse symptoms on the patients and great burden of sustained personal care for family caregivers at the end of life. Caregiving can lead to significant hidden costs for family caregivers, including domains such as finances, mental health, physical health, and social engagement. Without adequate professional and community help, few family caregivers can meet the challenges of caring for patients at home on their own. Home care arrangements can collapse if informal networks become too stressed. The inability of caregivers to meet patients’ needs may compromise patients’ well-being and unnecessary hospitalization of patients and death at a hospital may result. However, until now, there is a lack of adequate knowledge about the caregiving burden and impacts of caregiving for family of terminally ill cancer patients in Taiwan. Information available regarding the prevalence of family caregiving, in terms of types of care tasks, intensity and duration of caregiving and its associated short and long-term economic and noneconomic costs, especially for bereavement strains, for family caregivers of dying cancer patients in Taiwan is extraordinarily limited, if such research has been conducted at all. Interventions for empowering family caregivers to provide end-of-life care at home are seldom theory-driven. There is a lack of rigor research to adequately evaluate the efficacy of interventions. Therefore, a 5-year three phases study is proposed to: (1) longitudinally investigate the caregiving experiences (objective and subjective caregiving burden) of family caregivers of terminally ill cancer patients in Taiwan and to identify determinants of positive and negative impacts of caregiving; (2) develop and pilot test a theory-driven advanced home nursing care program for empowering family caregivers to provide end-of-life care for terminally ill cancer patients at home; and (3) conduct a double blind, randomized clinic trial with sufficient statistical power to adequately evaluate the efficacy of the developed intervention in helping family caregivers cope with the tasks of providing end-of-life care at home from pre-bereavement to bereavement. Several well-established instruments, including Family Strain Questionnaire, Caregiver Reaction Assessment, the Caregiver Quality of Life Index-Cancer scale, the Center for Epidemiological Studies-Depression Scale, and Toolkit of Instruments to Measure End-of-Life Care will be used to measure caregiving demands and impacts of caregiving. Morbidity and mortality information will be obtained from relatives and the National Health Insurance claimed dataset. After enrollment, family caregivers will be interviewed at a two-week interval for three months to cover the most demanding period of caregiving, thereafter, family caregivers will be followed at 3, 6, 12, 18, and 24 months. A repeated measures multivariate ANOVA using a mixed effect modeling procedure will be conducted to analyze changes of caregiving demands and positive and negative impacts over time and to identify determinants of and impacts of the intervention on caregiving outcomes. The Cox proportional hazards model will be conducted to assess the effect of the intervention on length of survival, while adjusting for other potential covariates. Results from this study may enlighten health care providers about the difficulties inherent in providing end-of-life care at home for family caregivers of dying cancer patients in general and those in Taiwan in specific. Findings from this study also shed light on factors that may facilitate or impede caregiving and influence caregiving outcomes. These insights may lay the groundwork for tailoring more effective interventions to help family caregivers to retain control, to find meaning in caregiving, to minimize negative impacts of caregiving, and to achieve highest quality of life. Findings from this study also can have policy implications for end-of-life care. Unless there is thorough understanding of the obstacles for achieving the preference of terminally ill cancer patients to stay and die at home (most importantly, difficulties for family caregivers to provide end-of-life care at home), policies aimed at reducing hospital admissions and thereby decreasing the high costs of medical care at the end of life, can be ineffective in reversing the trend of institutionalization of death and may be inequitable for disadvantaged patients who are unable to obtain care outside hospitals of a comparably high quality. By understanding the determinants of negative caregiving impacts or outcomes, health care professionals and policy makers can modify existing systems or create new incentives for health care providers to meet the needs of family caregivers and, in turn, let terminally ill cancer patients remain at home during the final days of life and achieve a high quality of life, or even a high quality of death.

Project ID:PG9704-0312
External Project ID:NHRI-EX97-9406PC