INTRODUCTION
Patients with advanced cancer and their family caregivers require spiritual support when death is approaching.1,2 During the transition to hospice care, spirituality serves as an essential inner resource and strength to shape the perceptions of patients and family caregivers about the end-of-life and coping with the challenges of physical and psychological distress.2–6 Given the significance of spirituality in decreasing distress and improving quality of life, the National Comprehensive Cancer Network and National Consensus Project for Quality Palliative Care incorporated spiritual assessment and care as part of their practice guidelines.7,8 However, patients with cancer and their family caregivers still reported unfulfilled spiritual needs or spiritual pain, posing a higher risk of experiencing other physical and psychological symptoms.4,9,10
In a study conducted in the southeastern U.S. where practicing religion is common, 30% of patients with cancer showed at least one spiritual concern. Of those, 75% reported having concerns about family followed by fear of death (28%) and feelings of isolation (17%).10 Particularly concerning are patients who may receive insufficient spiritual care as they live in regions where religious practices and beliefs slightly influence their daily life.11 For instance, in a diverse cancer population surveyed in New York, only 3% of them were asked by health care professionals about their religious or spiritual needs.12 From the perspective of health care professionals, they acknowledge the necessity of supporting spirituality and desire to provide more spiritual care to patients. Nurses and clinicians may provide spiritual care by remaining present after completing a task, listening to spiritual concerns, and assessing spiritual/religious beliefs and practices.13,14 Other important therapeutics are rarely offered, including encouraging patients to talk about spiritual challenges and arranging for a chaplain to visit.13,15 Health care professionals reported that lack of time, limited private space to discuss spirituality with patients, and insufficient training are the common factors that impede them from providing spiritual care.1,14,16 As a result, spiritual care remains deficient in clinical settings despite the importance of spirituality and the suggestions of the guidelines.
Patients with advanced cancer may turn to their family caregivers for assistance, as health care professionals have not fully integrated spiritual care into practice.17 Indeed, family caregivers are a great resource to provide their loved ones emotional (e.g., offering love and empathy), informational (e.g., giving advice), and instrumental (e.g., taking the loved ones to see a doctor) social support.18,19 During the caregiving process, the interactions between family caregivers and patients may strengthen their intimate bond.20,21 However, the new normalcy brought about by cancer may lead family caregivers to prioritize the needs of their loved ones over their own needs and overlook their own spiritual well-being.19 Family caregivers may experience a sense of isolation as a result of losing their own emotional and spiritual support from their affiliated religions or friends.6,19 Previous studies indicated that worrying about the future,9 being with friends and families, and laughing are the spiritual needs perceived by family caregivers.22 That is, connecting with others is essential for family caregivers to replenish their spiritual well-being so that they can continue to address the increased spiritual needs of patients. When additional support from communities or health care professionals is deficient, the spiritual well-being of family caregivers may deteriorate, increasing the risk of patients experiencing similar unfulfilled spiritual needs as family caregivers due to their intertwined relationships. However, there is a paucity of literature concerning the interrelatedness within patients with advanced cancer and family caregivers in the context of spirituality. The purpose of this study was to use the Actor-Partner Interdependence Model (APIM) to investigate the mutual effects of spiritual needs on the quality of life in patients with advanced cancer and their family caregivers by examining the presence of actor and partner effects through the following hypotheses (Figure 1):
Figure 1.
Proposed Hypotheses Based on the Actor-Partner Interdependence Model
Hypothesis 1 (H1): Perceived spiritual needs in patients with advanced cancer statistically impact their own quality of life (i.e., actor effect).
Hypothesis 2 (H2): Perceived spiritual needs in family caregivers of patients with advanced cancer statistically impact their own quality of life (i.e., actor effect).
Hypothesis 3 (H3): Perceived spiritual needs in patients with advanced cancer statistically effect the quality of life of family caregivers (i.e., partner effect).
Hypothesis 4 (H4): Perceived spiritual needs in family caregivers of patients with advanced cancer statistically effect the quality of life of patients with advanced cancer (i.e., partner effect).
METHODS
Setting and Sample
This cross-sectional study used the baseline data of a large clinical trial concerning the effectiveness of usual care combined with a systematic longitudinal assessment compared to the usual care alone. The parent study recruited patients with advanced cancer and their family caregivers from not-for-profit hospices in southeastern Florida. A total of 709 patients met the inclusion criteria of 1) being an adult (aged 18 years or older), 2) having a cancer diagnosis, 3) passing a mental status screening test, and 4) having an adult family caregiver providing caregiving for more than four hours a day. In addition, both the patients and family caregivers had to be able to read and understand English and provide their written informed consent. At the time of recruitment, if patients were confused or actively dying or family caregivers were receiving cancer treatment, they were excluded from the parent study. Prior to study initiation, approvals for the parent and current study were granted from the affiliated university/hospice institutional review boards.
Instruments for Patients and Family Caregivers
Spiritual Needs Inventory.
The Spiritual Needs Inventory (SNI) is a multidimensional self-reported instrument providing 17 spiritual needs in the five subscales of outlook, inspiration, spiritual activities, religion, and community. Among those 17 activities, thoughts, or experiences, participants were asked to identify the degree to which they perceived the item as a spiritual need on a Likert-type scale from 1 (never) to 5 (always) and indicated whether those spiritual needs were met in their own lives (yes/no). The total score for the SNI can range from 17 to 85 with a higher score indicating a higher degree of spiritual neediness. The number of unmet spiritual needs were calculated based on the dichotomous responses to each spiritual need.23 Considering the mutuality between patients and family caregivers, a previous study verified the psychometric properties of the SNI for use in family caregivers of patients with cancer admitted to hospice and revealed the three-factors structure of the SNI, including religious needs, outlook needs, and community needs.24 In this sample, the Cronbach’s coefficient alpha for the three subscales of religious needs, outlook needs, and community needs were similar in both patients with advanced cancer and family caregivers ranging from .67 to .90.
Instrument for Patients with Cancer
Hospice Quality of Life Index-14.
The self-reported, multidimensional Hospice Quality of Life Index-14 (HQLI-14) is a shorter version of the Hospice Quality of Life Index (HQLI). To reduce respondent burden for repeated measures of quality of life in patients with advanced cancer admitted to hospice, the HQLI-14 was developed by shortening the 28-item HQLI to 14 items with the same constructs, including psychophysiological well-being (6 items), functional well-being (4 items), and social/spiritual well-being (4 items). Each item was rated on a summated rating scale from 0 to 10 with the total scores ranging from 0 (worst quality of life) to 140 (highest quality of life). The significant correlations between the subscales of the HQLI and the HQLI-14 support construct validity with correlations of .90, .96, and .89 for psychophysiological well-being, functional well-being, and social/ spiritual well-being, respectively.25 The Cronbach’s coefficient alpha in this sample was .53, .60, .59, and .82 for the total scale and subscales of psychophysiological, functional, and social/spiritual well-being, respectively.
Instruments for Family Caregivers
The Short-Form 12 Health Survey.
The quality of life of family caregivers was assessed using the 12-item Short-Form Health Survey (SF-12). This short self-reported generic instrument was utilized to measure the perceptions of family caregivers about their own physical health (six items) and mental health (six items) as a proxy measure for their quality of life. The Cronbach’s coefficient alpha in this sample was .80 and .70 for the physical health and mental health, respectively.
Demographic Data
In addition to the above variables of interest, age, gender, race/ethnicity, marital status, religious affiliation, education, and the relationship between the patient with cancer and family caregiver were collected to describe the characteristics of the sample. The primary cancer diagnosis was documented from patient records.
Data Analysis
This study first used descriptive statistics, including frequencies, percentages, means, and standard deviations, to characterize the study sample and screen for univariate and multivariate normality and outliers using IBM SPSS Statistics 22. Structural equation modeling was then performed using LISREL 9.1 to account for the actor and partner effects of the APIM. The model parameters for the actor and partner effects were estimated using maximum likelihood. The model evaluations were based on the following fit measures, including the χ2 minimum fit function and other practical fit indices, the goodness of fit index (GFI; range from zero to one, values of ≥ .90 are desired), the adjusted goodness of fit (AGFI; range from zero to one, values of ≥ .90 are desired), the comparative fit index (CFI; range from 0 to 1, values of ≥ .90 are desired), the standardized root mean square residual (SRMR; range from 0 to 1, values of < .08 are desired, and the root mean square error of approximation (RMSEA; range from 0 to 1, values of < .08 are desired).
RESULTS
Description of the Sample
After the examination of missing data, out-of-range values, and outliers, a total of 660 distinguishable patients with advanced cancer and family caregivers were included in the primary analysis out of the original 709 patient-caregiver dyads. The majority of the patients with cancer and family caregivers in this study were non-Hispanic white, Christian, and married. Patients were predominantly male with female family caregivers aged 73 (SD = 12.19, range = 21–95 years) and 65 years (SD = 13.81, range = 19–97 years), respectively (Table 1). At the time of admission to hospice, patients had been diagnosed with cancer for more than 2 years (SD = 3.89 year), and most of them (34%) were given a diagnosis of lung cancer. On average, the perceived spiritual needs in patients with cancer and their family caregivers were 53.49 (SD = 14.37) and 57.35 (SD = 13.61) with each reporting a mean of 1.08 (SD = 1.67) and 1.22 (SD = 1.96) unmet needs, respectively. In particular, patients and family caregivers reported more spiritual needs associated with the community needs and outlook needs, such as being with family (mean = 4.35 and 4.15, respectively), thinking happy thoughts (mean = 4.12 and 4.20, respectively), and seeing smiles of others (mean = 4.11 and 4.29, respectively) (Table 2). Patients with cancer and family caregivers had similar unmet spiritual needs; of which, going to religious services (25.5%) and being with friends (9.8%) were the most unmet spiritual needs reported by patients with cancer. Similarly, going to religious services (13.1%), thinking happy thoughts (13.0%), laughing (12.6%), and being with friends (12.3%) were reported as the most unmet spiritual needs of family caregivers.
Table 1.
Characteristics of the Patients with Advanced Cancer and Their Family Caregivers
| Characteristics | Patients with Advanced Cancer (n = 660) |
Family Caregivers (n = 660) |
|---|---|---|
| Mean ± SD or n (%) |
Mean ± SD or n (%) |
|
| Age (in years) | 72.67 (12.19) | 65.49 (13.81) |
| Gender (% Male) | 56.6% | 26.5% |
| Race/Ethnicity | ||
| Non-Hispanic white | 640 (97.0%) | 633 (95.9%) |
| Black | 10 (1.5%) | 9 (1.4%) |
| Hispanic | 7 (1.1%) | 10 (1.5%) |
| Asian/Pacific Islander | 1 (0.2%) | 4 (0.6%) |
| Other | 2 (0.3%) | 4 (0.6%) |
| Religion Affiliation | ||
| Non-Catholic Christians | 372 (56.5%) | 372 (56.7%) |
| Catholic Christians | 187 (28.3%) | 189 (28.8%) |
| Agnostic | 90 (13.6%) | 83 (12.6%) |
| Jewish | 7 (1.1%) | 10 (1.5%) |
| Others | 4 (0.6%) | 6 (0.9%) |
Table 2.
Perceived Spiritual Needs in Patients and Their Family Caregivers (N = 660)
| Perceived Spiritual Needs | Patients with Advanced Cancer | Family Caregivers |
|---|---|---|
| Mean ± SD | Mean ± SD | |
| Go to religious services | 2.52 ± 1.65 | 2.74 ± 1.61 |
| Be with friends | 3.71 ± 1.21 | 3.74 ± 1.09 |
| Laugh | 3.93 ± 1.04 | 4.09 ± 0.91 |
| Think happy thoughts | 4.12 ± 0.98 | 4.20 ± 0.94 |
| Be around children. | 3.06 ± 1.53 | 3.54 ± 1.32 |
| Be with family | 4.35 ± 0.89 | 4.15 ± 1.00 |
| Talk with someone about spiritual beliefs | 2.46 ± 1.47 | 2.63 ± 1.38 |
| Read a religious text | 2.21 ± 1.49 | 2.50 ± 1.47 |
| Read inspirational materials | 2.30 ± 1.45 | 2.66 ± 1.43 |
| Sing or listen to music | 2.53 ± 1.44 | 2.81 ± 1.37 |
| See smiles of others | 4.11 ± 1.12 | 4.29 ± 0.91 |
| Be with people who share spiritual beliefs | 2.67 ± 1.55 | 2.79 ± 1.48 |
| Have information about family and friends | 3.85 ± 1.21 | 4.08 ± 1.07 |
| Talk about day to day things | 3.83 ± 1.22 | 4.05 ± 1.04 |
| Use inspirational materials | 2.07 ± 1.40 | 2.63 ± 1.52 |
| Use phrases from religious texts | 2.20 ± 1.49 | 2.52 ± 1.53 |
| Pray | 3.57 ± 1.56 | 3.93 ± 1.39 |
Assessment of the Measurement Model of Spirituality
Before verifying the proposed hypotheses, a measurement model was first evaluated to understand the relationships between the latent variables and their corresponding indicators. For the sake of simplicity, the three-factor solution of the SNI was utilized to examine whether such a construct of the SNI was appropriate for both patients and family caregivers. Confirmatory factor analysis was performed on the correlation matrix with the corresponding means and standard deviations. The results revealed that the measurement model that included the three-factor solution of the SNI fit the data appropriately from both statistical (χ2 = 3235.90, df = 1655, P < .01) and practical perspectives (RMSEA = .04, SRMR = .05, CFI = .88, GFI = .86, and AGFI = .84). However, a review of the modification index provided by LISREL indicated that the measurement model could be improved if one of the indicators on the SF-12 could cross-load on both of latent variables of physical and mental health. Because of the significant improvement in the χ2 minimum function (Δχ2(Δdf) = 78.24 (1), P < .01) as well as the improved goodness of fit indices (RMSEA = .04, SRMR = .05, CFI = .88, GFI = .86, and AGFI = .85), the extra path was included to verify the proposed hypotheses.
Assessment of the Structural Model of Spirituality
To estimate the mutual effects of spirituality on the quality of life in patients with cancer and their family caregivers, structural equation modeling accounting for the interdependence between patients and family caregivers was performed. According to the practical fit indices and the chi-square minimum fit function, the proposed causal model of spirituality fit the data reasonably (χ2 = 3178.84, df = 1660, P < .01; RMSEA = .04, SRMR = .05, CFI = .88, GFI = .86, and AGFI = .84). The actor effects as proposed in hypotheses 1 and 2 were shown in both patients and family caregivers. After accounting for partner effects, perceived outlook needs in patients significantly predicted their own functional well-being (β = .40, P < .05) and social/spiritual well-being (β = .61, P < .05) (Table 4). Similarly, perceived outlook needs (β = .43, P < .05) and community needs in family caregivers (β = -.29, P < .05) also significantly predicted their own mental health (Table 4). However, the partner effects in either patients with cancer or family caregivers were not statistically significant to demonstrate the mutuality of perceived spiritual needs on the quality of life.
Table 4.
Standardized Structural Coefficients between Perceived Spiritual Needs and Quality of Life in Patients with Advanced Cancer and Their Family Caregivers
| Perceived Spiritual Needs | Functional Well-Being | Psycho-Physiological Well-Being | Social/ Spiritual Well-Being | Physical Health | Mental Health |
|---|---|---|---|---|---|
| Patients with Advanced Cancer | |||||
| Actor Effects | Partner Effects | ||||
| Religious Needs | −.01 (.10) | .08 (.06) | .01 (.05) | .07 (.04) | .08 (.02) |
| Outlook Needs | .40 (.47)* | .11 (.28) | .61 (.25)* | −.15 (.17) | −.10 (.08) |
| Community Needs | −.26 (.71) | −.17 (.43) | −.30 (.37) | .20 (.26) | .06 (.12) |
| Family Caregivers | |||||
| Partner Effects | Actor Effects | ||||
| Religious Needs | .06 (.10) | −.02 (.06) | .10 (.05) | −.13 (.04) | −.05 (.02) |
| Outlook Needs | −.09 (.26) | .13 (.16) | −.13 (.13) | .12 (.10) | .43 (.05)* |
| Community Needs | .16 (.33) | .08 (.20) | .23 (.17) | .02 (.12) | −.29 (.06)* |
N = 660 dyads. Standard errors are in parentheses.
P < .05.
DISCUSSION
This cross-sectional study is among the first to examine the mutual effects of perceived spiritual needs on their individual and partner’s quality of life in patients admitted to hospice and their family caregivers. The proposed four hypotheses associated with actor and partner effects were tested using the APIM. In this sample, there were more male patients with cancer and female family caregivers, and they shared similar perceived spiritual needs, including being with friends, thinking happy thoughts, and seeing the smiles of others. Despite the similarity, family caregivers reported additional spiritual needs related to laughing, having information about family and friends, and talking about day-to-day things. Going to religious services was rated highest by patients and family caregivers as the unmet spiritual need. Such results demonstrated the gradual improvement of integrating spirituality into the palliative/hospice practice and reflected the broad definition of spirituality expressed through beliefs, values, and practices.26 Connecting with others appeared to be more essential than their religious needs. Patients admitted to hospice still considered going to religious services as part of their spirituality, confirming that individuals, even near the end of life, can be either spiritual, religious, or both.3 In terms of family caregivers, previous studies, which also showed few unmet spiritual needs, speculated that their spiritual needs may not manifest while their loved ones experienced physical symptoms, such as pain and shortness of breath, at admission to hospice care.2,22 Such assertion was supported by patients’ lower functional and psychophysiological well-being in this sample; however, the company of family caregivers should be taken into consideration as they may buffer the perceived spiritual needs of patients during such a transition, which in turn may lower spiritual needs of family caregivers.19
Application of the APIM demonstrated significant actor effects of spirituality after controlling for the partner effects. Specifically, the actor effect of the perceived outlook needs statistically predicted the functional well-being and social/spiritual well-being in patients (Hypothesis 1) and the mental health in family caregivers (Hypothesis 2). Such results are in line with the literature regarding the protective effects of spirituality on the functional and social/spiritual aspects of quality of life.27–30 In a cross-sectional study focusing on patients receiving hospice care, the significant associations of inspiration, spiritual activities, and religion were found with psychophysiological and functional well-being.31 Likewise, a meta-analysis was conducted to account for the mixed results related to the benefits of religion/spirituality and concluded that the cognitive and affective dimensions of religion and spirituality positively correlated with functional well-being.29 Concerning the insignificant partner effects shown in this study, a previous study investigated the dyadic relations between spirituality and quality of life in a sample of predominantly female cancer survivors and family caregivers. In addition to actor effects, significant partner effects were found, showing that the higher scores on finding meaning and peace in cancer survivors statistically predicted the physical health of family caregivers and vice versa.30 Due to the different constructs used to measure spirituality that limited the direct comparisons, the different gender composition of these two samples may account for the absence of partner effects in the current study. The literature has identified that women were more likely than men to show spiritual concerns,10 and men had better self-rated health and lower psychological distress when attending weekly public religious activities.32 In contrast, women benefited the most from their daily spiritual experiences to increase their happiness, such as feeling God’s love directly or through others, feeling inner peace, and feeling God’s presence,32 suggesting the different perceived spiritual needs expressed in men and women. Thus, when most cancer survivors and family caregivers were predominantly female, the impact of daily spiritual experience in one female partner may be easily transmitted to their female partner. Conversely, the positive partner effects may not emerge when patients and family caregivers had a different gender as evident in this sample with insignificant partner effects. However, previous meta-analyses did not detect gender as a significant moderator to differentiate the associations of religion and spirituality on either physical or social health. Still, they suggested the needs for additional research given the lack of studies examining the effects of sample demographics on the association of interest.29,33
The mental health of family caregivers was predicted by their own outlook needs and community needs as actor effects, showing that the effects of being with friends, laughing, and talking about day-to-day things improved their mental health. When the partner effects were absent from boosting their quality of life, being with family and children seemed to remind family caregivers of the distress associated with cancer, leading to the negative effect on their quality of life. One qualitative study interviewed family caregivers of patients with cancer about their caregiving experience, and one family caregiver described the needs of withdrawing from families so that he/she could have a break from caregiving responsibility.19 Taken together, these results demonstrate the protective effects of spirituality, but it also can be the source of distress when being around family. Such contrasting effects derived from spirituality raise questions about how family caregivers could recognize which aspects of spirituality can help them better cope with caregiving and how health care professionals can better assist them when they need spiritual and emotional support. The findings suggest the necessity of providing timely and ongoing spiritual assessments and care to strengthen the spiritual well-being of family caregivers, specifically during the transition to hospice care.
LIMITATIONS
Several limitations should be noted about the present study. The characteristics of the sample recruited in this study seemed to be homogenous in terms of race/ethnicity, and the generalizability of the findings may not be applied to minority groups. It should be noted that this sample reflects the reality that the majority of patients admitted to hospice in the US are predominantly white.34 Moreover, given the different types of kinship in the sample, it is likely that the actor and partner effects could emerge based on their levels of relationships between patients and family caregivers and/or gender differences. Due to the large sample size required for such analysis by different kinships and gender, further analysis was not permitted given the difficulty in recruiting such a vulnerable population. Finally, a greater proportion of the patients and family caregivers were Christians, and the questionnaire used to measure spirituality in this study contains a variety of activities and experiences to reflect the spiritual needs of participants affiliated with other religions. However, the literature examining religion/spirituality has concerned about the broad definition of spirituality and religiousness and the overlap of these two terms, which increases the difficulty of developing a valid and reliable instrument to fully reflect the spirituality of individuals.2,13
CLINICAL IMPLICATIONS
This study provides insight into the mutuality of spirituality between patients and family caregivers and demonstrates the necessity of integrating spiritual care into clinical practice. During the transition to hospice care, patients are in the stage of processing the meaning of life, and their family caregivers play a crucial role in enhancing the spirituality of their loved ones and managing physical and psychological symptoms. Thus, given the mandates from the accreditation body to provide spiritual care, nurses and other health care professionals can start by practicing spiritual self-awareness to understand their own spiritual values, beliefs, and attitudes, which will enhance to develop professional relationships with patients and their families. During the discussions with patients and family caregivers, health care professionals can use an assessment tool, such as the Faith, Importance and Influence, Community, and Address,17 to assess their spiritual history and needs throughout the care and make a referral to spiritual care specialists for them to receive an in-depth spiritual assessment. When the availability of chaplains only allows for them to see patients when requested, nurses are the front-line responders to address the spiritual needs of patients and family caregivers and engage in nonspecialized spiritual care, including being present, deep listening, bearing witness, and putting compassion into action.1 As spirituality is considered an intimate topic, health care professionals should show respect for each individual’s religious affiliation and build trust and rapport to allow patients and family caregivers to talk openly about their spirituality.1 Health care organizations also should provide additional training, such as the End-of-Life Nursing Education Consortium curriculum, to equip health care professionals with the knowledge and communication skills needed for spiritual care. In a time of uncertainty, especially during the coronavirus pandemic, the overwhelming increased number of patients receiving acute care may exacerbate the spiritual care deficit in clinical settings, resulting in patients being isolated from families and chaplains.17 Thus, being prepared to serve as a spiritual care generalist becomes imperative for health care professionals to initiate honest conversations with patients in a safe space and prevent the consequence of worrying about their family.17,35,36 Similarly, anticipatory grief should also be addressed to avoid complex grief for bereaved families following the death of patients.36
CONCLUSIONS
In summary, the findings of the current study showed the perceived spiritual needs in patients and family caregivers admitted to hospice and demonstrated the significant actor effects of spirituality on the quality of life in patients and family caregivers after controlling for the partner effects. This study identified which domains of spirituality are especially helpful for patients with advanced cancer and family caregivers to maintain their quality of life and provide a foundation for nurses and other health care professionals to plan for spiritual care.
Table 3.
Summary of Model Fit Statistics
| Model | χ2 | df | RMSEA | SRMR | CFI | GFI | AGFI |
|---|---|---|---|---|---|---|---|
| Measurement model | 3235.90* | 1655 | .04 | .05 | .88 | .86 | .84 |
| Modified measurement model | 3157.66* | 1654 | .04 | .05 | .88 | .86 | .85 |
| Modified full model | 3178.84* | 1660 | .04 | .05 | .88 | .86 | .84 |
χ2 = minimum fit function test; RMSEA = root mean square error of approximation; SRMR = standardized root mean square residual; CFI = comparative fit index; GFI = goodness of fit index; AGFI = adjusted goodness of fit index.
P < .01.
Acknowledgments
Financial Disclosures:
The authors acknowledge the National Institutes of Health for its support (5R01NR008252) of this project.
Footnotes
The authors have no conflicts of interest to disclose.
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