A brief problem-solving intervention for family caregivers to individuals with advanced cancer☆
Introduction
Patients with advanced or palliative illness often prefer to receive end-of-life care in their own home [1]. Regardless of patient or family preferences, current health care trends, including shortened hospital length of stay, increased amounts of care being provided on an outpatient basis, and limited availability of palliative care beds also contribute to the shift of care to the home setting. To make this possible, usually a family member must assume the role of primary care provider. Even with some assistance from formal home care services, family caregivers must assume responsibility for most care provided in the home including providing assistance with activities of daily living (e.g., bathing, eating), instrumental activities of daily living (e.g., finances), and home medical procedures (e.g., medications). Family caregivers also contribute to the patient's quality of life by enhancing symptom control and preventing serious complications through early identification.
Since family members are often unprepared to provide care in the home, they commonly experience stress and burden, which can negatively impact on their own health and well-being and can also compromise the quality of care provided. Most significantly and well documented is the negative impact that caregiving can have on the lifestyle of the caregiver [2], [3], [4], [5], their emotional well-being [2], [5], [6], [7], [8], [9], and physical health [7], [10], [11]. Care recipients can also be affected when the caregiver is not coping well; for example, poor social rehabilitation [7], poor treatment adherence [12], and increased emotional distress [13], [14] can result. Financial and health care system implications of stressful caregiving situations include increased hospital or hospice admissions [15], [16].
Two primary ways to enhance the home caregiving situation include increasing support received from either home care services or family and friends and/or enhancing caregivers' ability to provide care. For example, support from family and friends [17], [18], use of formal home care services [19], and confidence in caregiving abilities [20], [21], [22], [23] have been shown to lessen the negative impact of caregiving. However, even with increased support, informal family caregivers must still assume the bulk of responsibility for day-to-day care. Thus, while both areas are important, enhancing caregiver ability may have a larger impact on the overall situation.
Lazarus and Folkman's stress appraisal and coping theory [24] suggests that an individual's coping skills are of central importance to their successful adaptation to stress. Problem-solving abilities are one aspect of coping that facilitate stress management [25], [26]. Problem solving entails using a structured approach to manage the challenges that are contributing to the stressful situation. Interventions based on this approach have been developed for informal caregivers to patients with cancer [27]. Interactive sessions with family caregivers are used to teach and apply problem-solving techniques.
Despite the advent of this approach, few studies have evaluated interventions containing elements of problem solving. These studies included caregivers to individuals with dementia [28], [29], schizophrenia [30], age-related disability [31], and cancer [32], [33]. The intervention evaluated by Toseland et al. [32] in spouses of patients with cancer was multifaceted, including social support, problem-solving skills, and general coping skills. In 44 spouses who were randomized to receive the intervention, a moderately distressed subset experienced significantly less depression, better health, and better coping [32]. Limited improvements in the intervention groups in the other studies were also observed. The main limitation of the preceding studies was combining problem solving with social support, coping skills, and other components limiting investigators' ability to evaluate the effectiveness of problem-solving therapy on its own.
We chose to evaluate problem solving with family caregivers to individuals with advanced cancer because this is a relatively understudied patient/caregiver population that experiences multiple challenges, including declining health of the patient and psychological distress over social and cultural issues surrounding death and dying. Caregivers to individuals with advanced cancer are often required to provide increasing amounts of care as the patient's health deteriorates, and must also prepare for their imminent death.
Conducting research with patients with advanced or palliative disease and/or their families is fraught with challenges, including low participation rates (e.g., 27% [32], high attrition, and poor compliance [34], [35], and the impracticality of randomized controlled trials [35], [36]. To encourage participation by a larger percentage of family caregivers, we accordingly developed our intervention to be minimally disruptive to caregivers' schedules. This entailed developing an intervention that was brief and could be delivered in a one-time session.
The purpose of this study was to evaluate an intervention designed to enhance the problem-solving abilities of family caregivers to patients with advanced cancer. The intervention is designed to empower family caregivers by enhancing their problem-solving skills and, thereby, increasing their ability to cope with the demands of managing and providing care to a family member with advanced cancer. This study will test the following hypotheses. In family caregivers, the intervention will (1) enhance positive problem-solving skills and decrease negative problem solving; (2) enhance confidence in their ability to perform caregiving activities; and (3) decrease emotional distress.
Section snippets
Study design
The University Health Network's (UHN) Palliative Medicine, Palliative Radiation and Gastrointestinal Oncology programs identified caregivers to patients who had advanced cancer and were primarily being cared for at home. Ethical approval for the study was obtained from the UHN Research Ethics Board. A one-sample pretest, posttest design was used. Caregivers who consented to participate did the following: (1) completed a baseline survey under the supervision of a research assistant who provided
Results
One hundred and twelve patients were identified as having advanced cancer. Seven patients did not receive assistance from a family caregiver. Therefore, 105 patients identified family members who were providing care. Of these, 71 caregivers (67.6%) provided informed consent. Thirteen consenting caregivers did not complete the baseline survey because of the following reasons: they changed their mind (n=4), patient died (n=3), were not coming back to the hospital before the study completion date,
Discussion
This evaluation of a brief problem-solving intervention for family caregivers to individuals with advanced cancer suggests some potential benefits of the intervention. Over the 4-week follow-up period, caregivers showed a decrease in emotional tension and an increase in caregiving confidence and positive problem solving. This result is encouraging since our sample of caregivers were relatively good problem solvers at baseline as they scored high on the positive problem-solving scales and low on
Acknowledgements
The authors of this manuscript would like to thank Sujitha Ratnasingham and Judith Peranson for their valuable assistance with data collection. The following University Health Network-Princess Margaret Hospital clinics assisted with subject recruitment: Palliative Medicine Program, Palliative Radiation Oncology Program, and Gastrointestinal Cancer Clinic. This research was supported in part by a grant to the first author from the University Health Network Mental Health Research Program. A
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Scientific Meeting: Presented at the 13th International Congress on Care of the Terminally Ill, Montreal, Quebec, September 25, 2000. Teaching Problem-Solving to Advanced Cancer Family Caregivers.