Psychological Distress and Help-Seeking Attitudes of Cancer Caregivers on Guam

The present study explored factors contributing to the psychological distress and help-seeking attitudes of caregivers of cancer patients in Guam, U.S.A. For this purpose, 32 caregivers who accompany cancer patients at local, private clinics were administered tests measuring psychological distress, perceived social support, caregiver burden and attitudes toward seeking psychological help. Multiple regression analysis indicated that the combination of age, marital status, education, time since diagnosis, perceived social support, and caregiver burden significantly predicted caregivers’ level of psychological distress (Radj = .523, F (6, 23) = 6.290, p = . 001). Results showed that caregivers who experienced more caregiver burden, who were married to or living with the patients and had recently learned about the patients’ cancer diagnosis also reported more psychological distress. Additionally, female caregivers, with larger social networks, and lower levels of caregiver burden were associated with having more positive attitudes toward seeking psychological services. The present study is the first to address factors contributing to and elevating the psychological distress of caregivers in Guam, as well as variables affecting their attitudes toward seeking psychological help. Moreover, it supports the overlooked need for implementing psychological services for caregivers of cancer patients undergoing treatment on Guam. Statement of the Problem Cancer is a chronic disease involving long-term treatment and care that is implemented at both hospitals and homes. Cancer patients need care and assistance from their family members, friends, as well as medical personnel. These family members who offer their physical and emotional help are referred to as informal caregivers. Throughout their illness, it is estimated that 55 percent of cancer patients’ care needs are provided by informal caregivers (Nijboer et al., 1998). The burden associated with caregiving and the role of professional psychological help in alleviating such distress has not been researched in Guam cancer communities. Although there is no current data on the number of caregivers in Guam, the Guam Department of Public Health and Social Services (GDPHSS; 2009) reported that 1,580 Guam residents have been diagnosed with cancer and 720 people died of the disease during the years of 2003 and 2007. While numbers are relatively small compared to the United States, the percentage of patients diagnosed with cancer and mortality rates in Guam has increased over the past ten years resulting in cancer being the second leading cause of death in Guam. As cancer treatments take time and energy and continue for months, and even years, family members and friends, as informal caregivers, are often relied on for support. If there is at least one family caregiver helping a cancer patient, then there is at least as many caregivers as cancer patients on Guam. Given the increasing number of caregivers and the absence of research about their experiences in caregiving, it becomes imperative to study their psychological health as they continue in their demanding roles. The present study addresses this need and explores the factors contributing to psychological distress and professional psychological help-seeking attitudes among cancer caregivers on Guam. Pacific Asia Inquiry, Volume 4, Number 1, Fall 2013 122 Review of Literature Since the 1980s, multiple studies have addressed the negative outcomes of family caregiving, which has been termed caregiver burden. Caregiver burden has been conceptualized as both “objective” and “subjective” constructs. Objective caregiver burden is associated with negative outcomes resulting from caring for an individual with chronic illness in observable measures, such as financial difficulties (Calhoun, Beckham, & Bosworth, 2002). Subjective caregiver burden, as it is addressed in this study, is measured through the individuals’ feelings and perception of their caregiving experiences (Brannan & Heflinger, 2002). Even though caregiving burden is closely associated with psychological distress, previous research has demonstrated that the two are related yet different constructs. While caregiving burden is a risk factor, possibly a precursor to psychological distress, distress is the outcome of caregiving (Brannan & Helfinger, 2002; Nijboer et al., 1995). For example, in a longitudinal study of breast cancer patients and their primary caregivers, Grunfeld, Coyle, Whelan, Clinch, Reyno, Earle, et al. (2004) reported that caregiver burden is the most significant predictor of both anxiety and depression experienced by caregivers. Research conducted on caregivers’ overall psychological health indicated an increase in psychological symptoms, such as depression, anxiety, and emotional distress as caregivers remain in their caregiving roles for longer periods (Calhoun et al.; Nijboer et al., 1998; Tang et al., 2008). In some cases, caregivers have shown even higher distress levels than cancer patients themselves. For example, in Nijboer’s study (1998), partners’ levels of anxiety, not only were higher than the patients who underwent surgery for cancer treatment, but these psychological problems peaked 60 days after the patients were discharged, and continued for up to six months. Caregivers’ roles as observers with no ability to alter or manage the illness may explain their distress. Hodges and Humphris (2009) indicated that caregivers expressed more anxiety over fear of cancer recurrence than the patients themselves. The authors further reported that caregivers were reluctant to address their worries in fear of hindering the patient’s progress in treatment and disappointing friends and family. Hence, there is compelling evidence that caregivers often experience long-term and higher levels of distress than cancer patients themselves. Moreover, in Hasson-Ohayon et al.’s (2010) study of 150 cancer patients and their spouses in Jerusalem, the healthy spouses reported more psychological distress than patients. Because their support networks seemed to focus on caring for the patient, spouses’ needs seemed to be neglected. This assumption was further supported when spouses of cancer patients actually reported having higher levels of psychological distress than the patients and less support from family and friends. One of the significant factors affecting caregivers’ level of psychological distress is age. Gaugler et al.’s (2005) study on 233 caregivers of cancer patients in Southern and Northeastern America found younger caregivers reporting higher levels of distress than older caregivers. The authors attributed this finding to young caregivers’ lifestyle issues with higher demands such as child-rearing, full-time employment, and economic or financial responsibilities which may overburden them more than older ones. Authors found younger caregivers experiencing greater fatigue and exhaustion as well as feelings of distress. Caregivers’ psychological distress also varies depending on their relationship to the cancer patients. Spouses of cancer patients were shown to be the most vulnerable group of all caregivers. Gilbar and Zusman (2007) reported that spouses of women with breast cancer were Psychological Distress and Help-Seeking Attitudes of Cancer Caregivers on Guam 123 more susceptible to distress because of their conflicting roles. They were suddenly expected to assume new roles in the household, provide tangible and emotional support, cope with the spouse’s cancer diagnosis as well as physical ailments, and continue to be the primary financial supporter. Taking on these new roles while continuing to fulfill the existing ones must have exacerbated spouses’ psychological distress. Education was also found to significantly predict psychological distress among caregivers of cancer patients. Ferrario, Zotti, Massara, and Nuvolne (2003) reported caregivers with low educational level experienced more psychological distress than other caregivers in their sample. Income may be a confounding variable, being that participants with less education may have fewer financial resources. As they continue to deal with their limited finances, less educated caregivers become even more vulnerable to distress. Previous research has also revealed several stress reducers. For example, caregivers may experience less distress as they become adjusted to their caregiving roles, and become more comfortable in fulfilling patients’ needs. Gaugler et al.’s (2005) research demonstrated that as more time passed since the cancer patients’ diagnosis or treatment, caregivers reported less psychological distress. Additionally, presence of other caregivers in supportive roles may help in reducing the distress levels of primary caregivers. In their study of caregivers of cancer patients in Turkey, Kuscu et al. (2009) found caregivers who perceived high levels of support had low levels of depression and anxiety. Authors suggested that supportive network systems might have helped caregivers deal with daily stresses as well as caregiving burden, consequently, making them less susceptible to psychological distress. In support of this point, other researchers found that lacking in social support was associated with higher levels of depression (Gaugler et al., 2005; Sharpe et al., 2005). Therefore, there is enough evidence to draw the conclusion that social support helps caregivers deal with their caregiving roles and alleviates their overall psychological distress. With literature indicating that caregivers benefit from social support as they continue to fulfill their caregiving roles, social support and its relationship to psychological distress is also of interest in the present study. Social support is defined as the perception of emotional and tangible assistance from various sources that include family, friends, and special person (Blankfeld & Holahan, 1999). Caregivers’ perception of support available