Exploring the relationship between loneliness, spirituality, and health-related quality of life in Hispanic cancer caregivers

Caregiving has numerous adverse consequences related to the informal caregiver’s health, with caregivers reporting increased physical and psychological symptoms following cancer diagnosis [1]. Caregiving is burdensome; 40% of caregivers defined as family members or friends who provide unpaid supportive, informational, and emotional care [2] report high burden and 18% report medium burden [3]. Approximately 72% of caregivers of cancer patients spend an average of 33 h weekly with patients, and caregiving may involve complex medical care [3]. Caregivers frequently experience daily routine interruptions, excessive worry, and an overall increased burden while caring for cancer survivors. Evidence has shown that distress among cancer survivors is interdependent with the caregivers’ distress [4, 5]. Interestingly, caregivers report equal, if not higher, levels of emotional distress relative to the cancer survivors [6]. Similarly, the emotional distress of caregivers has negative implications for the cancer survivors’ quality of life (QOL). Caregivers regularly support cancer survivors emotionally while also providing complex medical and personal care in the home, but each caregiver’s unique level of distress can often inhibit their ability to provide the appropriate level of quality care [5]. Moreover, caregivers frequently lack adequate resources while learning to manage their own and the survivor’s symptoms [7].

To date, of the estimated 40 million family caregivers in the USA, 21% are Hispanic [8]. Each year, 149,100 new cancers are diagnosed in Hispanics, who are the fastest growing ethnic group in the USA [9]. Consequently, the demand for more caregivers is rising proportionately in the Hispanic population each year [10], frequently in the form of informal caring. [11]. Moreover, Hispanic and other minority caregivers tend to experience higher burdens from caregiving and spend more time on average providing care than their non-Hispanic giving counterparts [2]. Caregiving among Hispanics has been considered a culturally embedded value with Hispanic caregivers providing 45% of caregiving, which corresponds to 30 h per week in high burden caregiving time [2]. Consequently, Hispanic caregivers have an especially high risk of psychosocial, physical, and caregiver-associated burden [12, 13], and available studies report greater levels of distress and health disparities among this caregiving group [2]. These health disparities coupled with the demands of caregiving may create an unprecedented risk for low health-related quality of life (HRQOL) for Hispanic caregivers. Furthermore, informal caregivers regularly experiences increased responsibilities and complex demands that may compromise their HRQOL [14].

Loneliness is a psychosocial symptom of perceived social isolation (e.g., living alone, having no means of transportation, living in a rural area, or the subjective distressing feeling of being alone) that is associated with lower HRQOL and may mediate the relationship between spirituality and HRQOL in Hispanic caregivers of cancer survivors [15]. Importantly, caregiving can be associated with loneliness [12, 16] because the time demands of caregiving can reduce opportunities for socialization [17]. Loneliness and reduced social connections are known to promote stress among caregivers [18], including Hispanic adults [5], and can result in a lower HRQOL for both the Hispanic cancer survivors and their caregivers [19]. Loneliness appears to play a prominent role in burden experienced by caregivers of cancer patients [20‐22]. This is likely due to the fact that in the context of cancer, caregiving can be increasingly consuming and in many cases is accompanied by anticipatory grief over the potential loss of the loved one. Spirituality is the relationship between God or a higher power and one’s self, while religiosity is the organizational component of attendance at meeting places related to a specific belief [23, 24]. Spirituality has been identified as an important dimension of quality of life (QOL). For Hispanics, health issues are often met with a spiritual approach of prayer and reliance on faith [25, 26]. Hispanics who regularly or even sporadically attend church are likely to identify prayer as important for the health of family members and their own personal health [27]. Regardless of religious attendance, Hispanics may attain health benefits from spiritual and religious beliefs, although some studies of Hispanic caregivers of family members with long-term disabilities report that intrinsic and organizational religiosity is associated with a lower perceived burden than non-organized religiosity [28]. Relevant Hispanic cultural values include Espíritu which is defined as trust in spirituality. Espíritu is an important Hispanic core cultural value in which individuals may find solace. Hispanics report frequent engagement in spiritual activities as a way to cope with life events that they associate with stress [29, 30].

The current study was designed to explore the relational aspect of spirituality that may reduce perceptions of loneliness [31] while examining how that benefit is indirectly associated with overall HRQOL among Hispanic breast cancer caregivers. The research aims were to determine the total influence, if any, of spirituality on the HRQOL and loneliness in Hispanic breast cancer caregivers and to determine the extent to which perceived loneliness mediates the effect of spirituality on HRQOL. Our hypothesis of this investigation was that Hispanic cancer caregivers reporting higher spirituality would report lower perceived loneliness and higher HRQOL. Additionally, loneliness is hypothesized to mediate the relationship between spirituality and HRQOL. Hawkley and Cacioppo’s theoretical model of health and loneliness offers a useful framework for this investigation and explicates how loneliness accelerates the age-related deterioration of health [32‐34]. The process of aging is naturally associated with declining health in many people. Hawkley and Cacioppo’s model specifies mechanisms that are adversely affected by loneliness (e.g., stress responses, corruption of recuperative behaviors, diminished health behaviors) that exaggerate the effect of age on health-related quality of life; because cancer, loneliness and spirituality each increase with age [35, 36], we additionally sought to evaluate age as a moderator of the relationships among these factors.

Table 1 summarizes the demographic characteristics of the breast cancer caregiver participants. Caregivers were mostly females of lower socioeconomic states (SES) who were married, self-identified as Mexican American, with high school, vocational, technical, or some college education, and who were employed full-time. The mean age of caregivers in the study was 50.6 years; 7.6% were ≥ 65 years of age. The majority was female relatives of the breast cancer survivor and in self-described “moderate health” HRQOL (mean: 12.68 ± 3.13), “lower” loneliness (mean: 13.02 ± 6.31), and of “higher” spirituality (mean: 54.65 ± 9.42).

Table 2 presents a correlation matrix of all the study variables. An evaluation of the relationship between spirituality and separately loneliness and HRQOL showed that those with higher spirituality, regardless of age, reported higher HRQOL (Fig. 1). There was a significant mediating effect of loneliness on HRQOL with the lonelier participants reporting worse health (b =  − 0.17, p < 0.0001). Greater reported loneliness was also associated with lower, self-reported HRQOL.

The purpose of this study was to explore the influence of spirituality on the HRQOL and loneliness in caregivers who were shown to be of lower SES Hispanic breast cancer survivors. Major findings indicate that there was a significant association between spirituality and HRQOL such that the people with better spirituality reported better health. In the model test of mediation, with loneliness as the mediator, a significant direct effect was shown between loneliness and HRQOL. An indirect effect of spirituality on higher HRQOL via reduced loneliness was demonstrated. Our main finding suggests spirituality may be beneficial to HRQOL, due in part to reduced loneliness among more spiritual caregivers. These effects appear to be consistent over the lifespan because age did not moderate the effects of spirituality in Hispanic cancer caregivers. Prior work has established the relationship between patient HRQOL and loneliness [38], but the influence of the patient caregiver’s spiritual well-being upon this relationship, as demonstrated here, has not previously been examined. With loneliness and HRQOL shown to be interrelated [32, 39], these findings indicated similar significant results, further informing on the nature of loneliness influences on HRQOL and potential pathways to alleviate poorer health outcomes via spirituality. In this mediational relationship, as self-reported loneliness decreased and spirituality increased, HRQOL improved.

These findings also showed that caregiver loneliness played a significant role as a mediator in the relationship between caregiver Spiritual Well Being (SWB) and HRQOL, which is the first demonstration of this effect among Hispanic cancer caregivers reported in the literature. Two life aspects of interest, loneliness and spirituality, and the association with HRQOL were significant. Research has been shown to elucidate these models in prior studies among cancer survivors, but limited work has been done among caregivers, especially in Hispanics [40, 41]. While survivors were not the focus of this study, our finding suggested that the nature of the relationships between SWB, loneliness, and HRQOL among Hispanic cancer caregivers were similar to other studies where these are significant relationships to consider for dyadic outcomes [39, 42]. Our study results were comparable to findings that demonstrated caregiver spirituality is central to coping strategies and it is a buffer that influenced caregiver HRQOL [43‐45]. Of note in the present study, this relationship remained stable and statistically significant over a range of ages, in contrast to other findings [46, 47]. However, it should be noted that less than 15% of the present sample was over the age of 60 years, which is a point in the lifespan where age-related changes in health would begin to become most evident. It is at least possible that in a sample of caregivers in older age, the hypothesized moderating effect of age on the loneliness-spirituality-health mediation could be more apparent.

The findings from this study showed that the generally positive association between spirituality and better HRQOL may be explained in part by the lower levels of loneliness—a phenomenon that is deleterious to health—among those with higher levels of spiritual well-being. Accordingly, the most effective intervention to promote higher HRQOL for Hispanic caregivers may well be to attend to the caregiver spiritual needs if they have demonstrated experiences of loneliness [40]. Interventions that include spiritual counseling, programs, or therapy to enhance spiritual well-being among caregivers of Hispanic cancer survivors should be explored [48]. Additional research is needed to more robustly evaluate the impact of spirituality in Hispanic cancer caregivers and what role loneliness has in potentially influencing HRQOL.

Certainly, spirituality is as an important dimension of QOL and may be particularly so for Hispanics who often practice spiritual approaches to address health issues in addition to relying on faith. Our findings provide a rationale for future studies that include religious and spiritual approaches to support Hispanic cancer caregivers’ QOL[25, 26]. As reported, Hispanics who regularly attend church and those who attend only sporadically are equally likely to identify prayer as important for family and personal health [27]. Therefore, regardless of the frequency of religious attendance, Hispanics may attain health benefits from spiritual and religious beliefs. Given all the challenges, caregivers remain a fundamental source of care for cancer patients in the USA, yet the psychosocial needs and health outcomes of caregivers are less well understood, especially among Hispanic caregivers. Caregivers of cancer patients play an important role in the patient’s every day care management and end-of-life care [49, 50]. Caregivers with increased stress due to the extended length of caregiving have demonstrated an increased risk of morbidity and mortality [51]. Greater time, effort, and resources placed into caregiving are associated with compromised social life, further deteriorating a caregiver’s QOL and adversely affecting health [52]. The growing population of survivors and caregivers warrants further investigation into the roles and demands of caregiving, especially among minority populations.

There are limitations to the present study that should be considered when interpreting its findings. First, the study included only caregivers of Hispanic women with breast cancer; therefore, it is unclear whether the results would be generalizable to the larger population of non-Hispanic caregivers. Given the lower socioeconomic status of this sample and the literature documenting that spirituality increases for those with lower SES and minorities, these results cannot be generalized to those with higher SES and non-Hispanic Whites [53]. Second, the data used for testing the hypotheses were cross-sectional, and this cannot substantiate causal connections between the independent, mediating, and dependent variables as convincingly as longitudinal data. Finally, most of the sample were middle aged (< 60 years of age), limiting the ability to robustly evaluate age-related influences of QOL, spirituality, and loneliness. Future research that examines the nature of the relationships between caregiver HRQOL, loneliness, and spirituality with different caregiver populations, including those of a broader age range, will add to the generalizability of study results.

Our principal finding is that higher spirituality has an indirect effect on better health-related quality of life through reduced loneliness among Hispanic cancer caregivers. With the burden of higher mortality after cancer in Hispanics and concerns over poor health-related quality of life, our findings suggest that it will be important to address spirituality and loneliness among informal caregivers. This is consistent with Hawkley and Cacioppo’s (2007) model of health and loneliness which posits that lower perceptions of loneliness predict better health outcomes. It would appear that this study further clarifies this relationship by showing an association between spirituality and loneliness. This illustrates an area for further investigation, and possibly interventions addressing spirituality as well as loneliness, to improve caregiver outcomes. Specifically, interventions that provide strategies for improving spirituality, such as teaching spiritual self-care, facilitating a regularly designated time for spiritual activities (e.g., explore engagement in spirituality-based services, practices, readings or identify alternative approaches to enhance HRQOL among caregivers with lower spirituality), and finding purpose and meaning in life, can improve HRQOL. Given these approaches pose no side effects or risks, are low cost, and are readily available, acquiring necessary supportive spiritual skills may help to alleviate poorer caregiver HRQOL related to caregiving demands for family members who are cancer survivors. This will ultimately help maintain the caregiver’s own health and quality of life enhancing the ability and opportunity for a caregiver to deliver effective care to survivors.