The diagnosis of cancer has a long-term impact on the emotional, physical, social and spiritual aspects in all the family members as well as the patient. Caregivers play a very important role in offering optimal therapy to cancer survivors through preventing isolation, providing emotional support and managing physical impairment [14, 15].In this respect, an accurate assessment of unmet needs in cancer survivors and their caregivers is a very important step in the development of appropriate interventions to improve treatment effects, including QoL. Identification of the unmet needs of cancer survivors and caregivers will help healthcare staff to communicate with them easily and effectively, and thereby it will enable them to implement appropriate treatment-related decision making and provide improved treatment and care. So far, many studies have been conducted to identify unmet needs of cancer survivors and provide interventions to improve their QoL, but few attempts have been made to investigate unmet needs of caregivers. Therefore, we analyzed the unmet needs and QoL of caregivers of Korean breast cancer survivors through a multicenter cross-sectional interview survey.
Most caregivers start to perform their roles in a sudden situation even without having time to prepare. Therefore, they have various types and degrees of unmet needs, and they care for cancer survivors without their needs adequately satisfied in many cases. According to Heckel et al. [16], 57% of cancer caregivers have at least one unmet need, and most commonly endorsed unmet needs are information and healthcare service needs. Recently, a systemic review also reported that information needs were the most prevalent unmet needs of caregivers [5]. In addition, in a study of caregivers of early stage breast cancer patients, healthcare service and communication needs were the highest ranked needs [17]. In the present study of caregivers of Korean breast cancer survivors, unmet needs were highest in the domain of ‘healthcare staff’ and the item with the highest unmet needs was ‘needed information about the current status of the patient’s illness and its future courses.’ Among the top 10 unmet needs, 9 items belonged to the ‘healthcare staff’ domain, and these results suggest that most caregivers want to speak candidly with their healthcare staff in easy-to-understand terms about the illness, treatment and future of cancer survivors they care for. Recently, caregivers can acquire and share a lot of information through online services such as internet search or social networking services, but the conventional method of meeting unmet needs through interviews with healthcare staff is considered an important factor even these days. Therefore, healthcare staff is required to make an effort to communicate effectively with caregivers by providing adequate and relevant information in an empathetic manner. In particular, in Korea, high unmet needs for healthcare staff and information can be partially attributed to the fact that a very short time of 10 minutes or less per patient is generally allocated for outpatient treatments during which one-on-one individual consultation and information can be provided in most medical institutions. On the other hand, whereas emotional and psychological needs have been reported to be high in cancer survivors [18, 19], caregivers were found to have high needs for healthcare staff and information. These results are considered to reflect the situation where caregivers generally give greater focus to communication and information acquisition that are helpful for taking care of survivors rather than their own well-being.
Several studies have reported different results about the relationship between age and unmet needs in caregivers [6].This inconsistency of study findings is thought to be mainly due to the diversity of studies in terms of the subject population, conceptualization of unmet needs and measurement methods. Considering that spouses of cancer survivors (44.4%) constituted a large percentage of the participants of this study, we reviewed previous studies conducted on the spouses of patients as caregivers, and unmet needs were found to be higher in caregivers aged 60 and older [20]. Our study also revealed that as age increased, unmet needs became higher in the family/social support, psychological problems and religious support domains. Caregivers with the educational level of high school or lower were found to have higher unmet needs in family/social support, psychological problem and religious support than the group with the educational level of college or higher. This result is consistent with the study by Berardi R. et al [14], which reported that as educational level was higher, the level of unmet needs decreased. These results are thought to be related to the fact that people with higher education levels are likely to have more opportunities to fulfill unmet needs through various mass media.
The presence of the spouse allows individuals to seek psychological stability through information acquisition and exchanges of opinions, and thereby it leads to an increase in satisfaction with life. In the case of separated (divorce, separation or bereavement) people, greater unmet needs arise because they have to rely only on healthcare staff. This study also found that unmet needs for psychological problem and religious support were higher in the group of people without the spouse, and these results were consistent with previous studies.6 The employed caregivers expressed greater needs for family/social support and religious support than the unemployed group, and this result supports previous research which reported that currently working family members have higher unmet needs [21]. Employed people have less time to spend with the family and acquaintances due to a lack of personal time, which leads to the neglect of interpersonal relationships, and work-related stress may have negative effects on family/social relationships. The religious group showed higher unmet needs for religious support than the irreligious group, and this result seems to show that caregivers with religious faith rely more on religion to deal with difficult situations and have spiritual interests. Since caregivers with higher unmet needs for religious support have been reported to experience more work limitations [22], efforts to address religious support needs are required even for social and economic development.
Caregivers of cancer survivors have diverse problems, including worsened physical health and severe psychological distress [23, 24]. Furthermore, in a prior study, the levels of distress and anxiety were found to be higher in them than cancer survivors they care for [25], and these problems have been reported to increase the burden of caregivers and decrease their QoL [14, 26].The analysis results of this study indicated that unmet needs are higher in the group with the experience of stress and despair, and unmet needs are associated with poorer QoL. These results were consistent with findings of previous studies [27, 28]. Since this study is a cross-sectional study, it is not clear whether stress and despair preceded or followed unmet needs, but if psychological support for caregivers is provided from the early stage of cancer diagnosis, it is expected to greatly help to reduce distress and alleviate unmet needs. In addition, since this psychosocial support can prevent the progression from the experiences of stress and despair to thoughts of suicide, which have been found to be closely related to unmet needs, early diagnosis and active interventions regarding the mental health status of caregivers are essentially required.
The level of QoL in caregivers of cancer survivors depends on changes in the situations of both survivors and caregivers [29]. Earlier stages of cancer and positive responses to treatment were positively associated with the caregiver’s QOL. On the other hand, loss of physical strength, excessively demanding caregiving roles, feelings of being burdened, and the impact of caregiving on caregivers’ lives are known to be related to lower levels of QoL of caregivers [30, 31]. In addition, unmet needs of caregivers are closely related to poorer QoL [10, 32]. Consistent with previous studies, the results of this study also showed that the group with problems in the domains of QoL had statistically significant higher unmet needs in all domains, and in particular, poorer QoL was most highly correlated in unmet needs in the psychological problem domain. Therefore, knowledge about caregivers’ unmet needs is necessary in order to help caregivers attain good QoL and maintaining the QoL of caregivers is important to providing effective care.
Ultimately, in multiple regression analysis, caregivers with older age, employment, the presence of religion, and higher levels of stress and despair in daily life expressed higher unmet needs. Therefore, the application of active and accessible programs (e.g., use of online platform) which can relieve unmet needs and improve QoL of vulnerable breast cancer caregivers will be able to produce better treatment outcome.
The present study has several limitations. First, we did not analyze differences in caregivers’ unmet needs according to clinicopathological characteristics of breast cancer survivors. Second, this study is a hospital-based study and the participants were recruited only from six medical centers, so a careful approach is needed in generalizing the findings to all caregivers of Korean breast cancer survivors. Third, since this study is a cross-sectional study, we could not accurately evaluate cause-effect relationships. Therefore, more longitudinal studies with a rigorous study design should be adopted. Finally, the caregivers were recruited by universal sampling, which led to sampling bias. However, despite the limitations mentioned above, this study identified specific unmet needs of caregivers of Korean breast cancer survivors and related factors and showed that their QoL can be improved through efforts to address their unmet needs.
The application of a variety of practical and effective support programs through a multidisciplinary approach for not only cancer survivors but also caregivers will improve the treatment outcomes of cancer survivors and further lay the foundation for providing comprehensive cancer care.