Effect of integrated caregiver support on caregiver burden for people taking care of people with cancer at the end of life: A cohort and quasi-experimental clinical trial
Introduction
As death approaches and symptoms deteriorate, the dependence on others to perform activities of daily living increases in advanced cancer patients. Family caregivers are an important support during the terminal stages of the disease. Taking care of advanced cancer patients can be extremely challenging, with heavy responsibilities associated with managing the patients’ symptoms (Weibull et al., 2008), providing emotional support (McPherson et al., 2007), assisting in various care-related tasks (Stenberg et al., 2010), and lending financial support (Pagano et al., 2014). The heavy and diverse work of caring affects the physical (Tomarken et al., 2008), emotional (Doorenbos et al., 2007), social (Kalnins, 2006), and financial (Hanratty et al., 2007) health of caregivers.
Caregiver burden refers to the physiological, psychological, social, economic, and emotional strains that a caregiver experiences while providing continuous care to patients or family members (Given et al., 1992). Caregiver burden is influenced by the characteristics of the patient (i.e., diagnosis, treatment, stage of disease, and functional status) (Ferris et al., 2009, Given et al., 2011), caregiver (i.e., psychological resources and social support) (Lee et al., 2013), and care environment (i.e., socioeconomic status) (Stenberg et al., 2010, Williams and McCorkle, 2011). Objective burden, represented by disruption of the family life, is potentially measureable by observing specific caring tasks; in contrast, subjective burden is difficult to assess because it is related to the caregivers’ experiences of physical, emotional, social, and economic difficulties (Montgomery et al., 1985). However, caregivers often ignore or hide their feelings and needs when their loved one is in the terminally ill stage (Raveis et al., 1998). Therefore, tools that can help health care providers identify these difficulties are required.
Self-efficacy is the extent or strength of one's belief in one's own ability to complete a given task or reach a goal, as well as a mediator of health behavior (Bandura, 1977). Self-efficacy can be observed in the coping behaviors that occur in response to appraisal of the caregiving situation. Caregivers facing the stress and challenge of caregiving can benefit from strong self-efficacy. Steffen et al. (2002) indicated that the self-efficacy of caregivers comprises responding to disruptive patient behavior, obtaining respite, and controlling upsetting thoughts. Thus, the ability to identify stressors and increase self-efficacy is central to improving caregiving experiences.
Caregiver burden accumulates through constant exposure to caregiving demands and can affect caregivers’ well-being through decreasing physical health (i.e., dysregulated inflammatory control) (Rohleder et al., 2009) and concentration (Mackenzie et al., 2007) as well as increasing mortality (Boyle et al., 2011). A previous study focused on developing and testing interventions to support caregivers through psychoeducation, skills training, and therapeutic counseling (Northouse et al., 2010). However, most of these interventions were delivered in a dyadic manner, and their intensity and duration varied tremendously, resulting in small-to-medium effects on reducing the caregiver burden and increasing caregiver self-efficacy (Lorenz et al., 2008, Northouse et al., 2010). Moreover, few studies have focused on caregivers of terminally ill cancer patients (Kanter et al., 2014, Porter et al., 2011), who might benefit from short visit intervals (Porter et al., 2011) and use of multiple assessment tools (Carter, 2002, Carter and Chang, 2000, DuBenske et al., 2014). Most importantly, the caregiving burden may change rapidly because the physical condition of terminally ill cancer patients deteriorates quickly; however, few studies have used longitudinal designs to examine the caregiving burden till the patient's death (DuBenske et al., 2014). Therefore, we evaluated a support intervention for caregivers of terminally ill cancer patients in Taiwan. We used multiple measurements to assess the benefits of this intervention for caregivers in the 3 months before the patients’ death.
Section snippets
Study design and sample
The study employed a longitudinal repeated-measure design. Caregivers scheduled to receive support intervention sessions at a medical university hospital in North Taiwan between November 2008 and December 2010 were included in this study. The research ethics committees of the study site approved the research protocol (TMUH-05-08-12). Participants were recruited from a cohort of caregivers of advanced cancer patients in two cancer wards at out hospital. The inclusion criteria were as follows:
Demographic characteristics
Of the 135 caregiver–patient dyads considered eligible to participate in the study, 17 refused to participate for various reasons such as being too occupied with providing care or perceiving study participation to be too demanding. Therefore, 118 were successfully assigned to the experimental (n = 58) and control (n = 60) groups. Of these, another 37 patients were withdrawn for reasons such as refusing to participate or receiving hospice care. Finally, 81 caregivers (40 in the experimental group
Discussion
The caregiver support intervention was based on a recognized stress-coping framework to enhance caregiver self-efficacy, thereby reducing the caregiver burden for terminally ill cancer patients. This is the first study to determine the effect of a family support intervention program on the caregiver burden for terminally ill cancer patients in their last 3 months before death. The study also benefits from using both subjective and objective measurements of the effect of the intervention on the
Implications for nursing
Based on our results, we can provide suggestions regarding caregiver support for health care providers. First, an effective program may need to be provided over a long period of time. Although previous studies have set limits on the time for providing caregiver assistance (Creedle et al., 2012, McMillan and Small, 2007, McMillan et al., 2006, Porter et al., 2011), the symptom severity of patients and emotional distress of caregivers both appear to increase as death approaches (Burridge et al.,
Conclusion
The caregiver support intervention resulted in positive changes in the caregiving burden and self-efficacy of caregivers in the 3 months before the death of advanced cancer patients. The intervention is, therefore, an appropriate strategy for supporting caregivers in the last three months of a patient's life. The program provides clear guidelines for clinical staff to allow them to assess and support caregivers quickly. We suggest that to be effective, such an intervention should be provided
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