Support Care Cancer (2007) 15:1367–1374 DOI 10.1007/s00520-007-0265-4
ORIGINAL ARTICLE
Psychological distress of female cancer caregivers: effects of type of cancer and caregivers’ spirituality Youngmee Kim & David K. Wellisch & Rachel L. Spillers & Corinne Crammer
Received: 13 December 2006 / Accepted: 26 April 2007 / Published online: 22 May 2007 # Springer-Verlag 2007
Abstract Introduction This study examined the effects of the survivor’s cancer type (gender-specific vs nongender-specific) and the female caregiver’s spirituality and caregiving stress on the caregiver’s psychological distress. Cancer caregivers, who were nominated by cancer survivors, participated in a nationwide quality-of-life survey with 252 caregivers providing complete data for the variables. Patients and methods Breast and ovarian cancer were categorized as gender-specific types of cancer (GTC+), whereas kidney, lung, non-Hodgkin’s lymphoma (NHL), and skin melanoma cancers were GTC-. Spirituality, caregiving stress, and psychological distress were measured using the functional assessment of chronic illness therapy— spiritual well-being, stress overload subscale, and profile of mood states—short form, respectively. Results and discussion Hierarchical regression analyses revealed that female caregivers whose care recipient was diagnosed with a nongender specific type of cancer (GTCgroup) reported higher psychological distress than did the GTC+ group. The GTC- group also reported lower spirituality and higher caregiving stress related to higher psychological distress than did the GTC+ group. In addition, the beneficial effect of spirituality on reducing psychological distress was more pronounced among the GTC- group or when caregiving stress increased. Y. Kim (*) : R. L. Spillers : C. Crammer Behavioral Research Center, American Cancer Society, 250 Williams St., NW, Atlanta 30303, USA e-mail:
[email protected] D. K. Wellisch University of California, Los Angeles, CA, USA
Conclusions Our findings suggest that female caregivers of survivors with a nongender-specific cancer may benefit from programs designed to reduce their psychological distress, and caregivers who are low in spirituality need help to derive faith and meaning in the context of cancer care. Keywords Caregivers . Gender-specific types of cancer . Spirituality . Psychological distress
Introduction An estimated 200,910 women will be newly diagnosed with breast or ovarian cancer in the USA in 2007, and 55,740 women will die from these diseases, which, after lung cancer, together make up the second leading cause of cancer death among women [1]. Although the 5-year survival rate has improved for both cancers, from 75 to 88% for breast cancer and from 37 to 44% for ovarian cancer from 1974 to 2000 [2], people still perceive cancer as a life-threatening disease. Consequently, a cancer diagnosis is likely to immediately evoke existential apprehension and concern not only for the individuals with the disease but for their family and close friends as well. The existential or spiritual impact of the cancer diagnosis and treatment is particularly prominent among women whose mothers, sisters, or daughters (i.e., first-degree relatives) are diagnosed with breast or ovarian cancer not only because they are more likely to deal with an immediate challenge brought on by the cancer to their established family dynamics [3] but also because their own lifetime likelihood of developing the disease themselves is greater. Women with a family history of breast cancer have twice the risk of developing breast cancer as women with
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no family history [1]. Indeed, accumulating evidence has supported the view that for many women, a family history of breast or ovarian cancer has an adverse psychological impact. Female first-degree relatives of breast or ovarian cancer tend to report greater levels of psychological distress [3–5]. However, it remains unknown whether the psychological distress reported by female relatives of breast or ovarian cancer is greater or less than those of other types of nongender-specific cancer. In addition, the role of spirituality on the association between the caregiving stress among female first-degree relatives of breast or ovarian cancer compared with those of other types of nongender-specific cancer remains unexamined. Spirituality refers to a search for peace, wholeness, or harmony with a higher power, and a sense of meaning and purpose in life [6]. Accumulating evidence supports the perspective that spirituality as a form of coping buffers the adverse impact of various types of stressors among a wide range of populations including college students [7], patients with cancer [8–10], and caregivers of HIV patients [11, 12]. Yet, little is known about the family members’ experiences in finding faith and meaning from the challenge of cancer in a close relative [13, 14] and whether it buffers the adverse effect of the caregiving stress. This paucity of research is surprising, given the potentially life-threatening nature of cancer, which may precipitate a propensity for heightened spirituality or greater recognition of spiritual needs [15], particularly among female first-degree relatives of breast or ovarian cancer. The psychological concerns brought up for women by a first degree relative’s cancer diagnosis and treatment may differ between different types of cancer, such as genderspecific cancer (e.g., breast or ovarian) or nongenderspecific cancer (e.g., lung or non-Hodgkin’s lymphoma), because the female gender-specific cancers are more likely to have hereditary components than the nongender-specific counterparts. Thus, the current study examined the effects of the survivor’s type of cancer (gender-specific vs nongenderspecific) on the caregiver’s psychological distress among female first-degree relatives. Furthermore, we tested the role of spirituality and caregiving stress on the caregiver’s psychological distress. Finally, we explored the possible moderating effects of the type of cancer and caregiver’s spirituality on the adverse impact of caregiving stress on psychological distress (Fig. 1). To clarify the relations among study variables, we included as covariates several variables, such as the characteristics of the care recipient (i.e., cancer survivor’s) and caregiver, that are closely related to cancer care. We hypothesized that based on the stress-coping theory [16], the caregiver’s spirituality would buffer the adverse impact of caregiving stress on the psychological distress. However, we did not generate hypotheses because of the paucity in the literature on psychological distress as a
Support Care Cancer (2007) 15:1367–1374 Gender-specific Type of Cancer
First-degree Relative Status
Caregiving Stress
Psychological Distress
Spirituality
Fig. 1 Study model
function of both the survivor’s type of cancer and caregiver’s stress among a homogeneous sample of female first-degree relatives. Instead, we have explored the following research questions: (a) whether the levels of psychological distress would differ between caregivers of survivors who had been diagnosed with a gender-specific type of cancer (GTC) and caregivers of survivors with a nongender-specific type of cancer (non-GTC); (b) whether the levels of psychological distress would be related to the caregiver’s levels of spirituality and caregiving stress; and (c) whether the levels of psychological distress would differ as a joint function of the type of cancer, spirituality, and caregiving stress. These research questions were tested controlling for the variances explained by selected covariates that included survivors’ functioning status and caregivers’ demographic characteristics.
Patients and methods Participants The American Cancer Society’s Quality of Life Survey for Caregivers was designed to assess the impact of cancer on the quality of life of family members and close friends who provide care for cancer survivors. Data reported here are from the baseline data collection. Participants were nominated by cancer survivors who completed the American Cancer Society’s Study of Cancer Survivors [17]. The survivors were asked to nominate individuals in a familylike relationship who constantly provided help to them. Eligibility criteria for participating in the caregiver study were being 18 years or older, able to speak and read English or Spanish, and residing in the USA. As shown in Fig. 2, a total of 1,635 caregivers completed the survey (67.3% response rate), of whom 1,068 were female. Of those, 39.2% cared for female cancer survivors. Of those female caregivers of female cancer survivors (n=417), a total of 323 caregivers of female cancer survivors with breast, kidney, lung, non-Hodgkin’s lymphoma, skin melanoma, or ovarian cancer were included in the study. Of those 323 caregivers, 252 caregivers who provided valid information for the study variables
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Caregiver Survey completed (n = 1,635)
Female CG (n = 1,068)
Male CG (n = 567)
Female CR (n = 417)
Male CR (n = 651)
Eligible CG for this study (n = 323)
Ineligible CG for this study (n = 94)
Complete Data (n = 252)
Incomplete Data (n = 71)
Fig. 2 Study participant flow chart. CG=caregiver; CR=care recipient
were included in the subsequent analyses. Consequently, the numbers of cases by cancer site included in the analyses were 140, breast; 15, kidney; 44, lung; nine, non-Hodgkin’s lymphoma; seven, skin melanoma; and 37 ovarian cancer. Approximately three quarters of participants were firstdegree relatives (n=198: 28 mothers, 60 sisters, and 110 daughters) of the cancer survivor. The nonfirst-degree
relatives consisted of 21 friends, eight daughters-in-law, six other in-laws, seven partners, and 12 others. Participants with incomplete information did not differ significantly in available study variables except that caregivers who provided incomplete information were older than caregivers who provided complete information (phigh school) Caregiver’s household income (≥$40,000) Caregiving status (currently providing care) Other demographic characteristics of caregivers: White Married Employed Study predictor variables: Gender-specific types of cancer (GTC+) First-degree relatives (FDR+) Caregiving stress Caregiver’s spirituality Outcome variable: Psychological distress
Mean (SD or %)
Possible range
49.59 (10.99) 44.91 (11.43) 50.4% localized, 31.7% regional, and 17.9% distant 48.35 (14.52) 70.2% 57.5% 23.0%
0–100 0–100
89.3% 71.7% 71.7%
– – –
70.2% 78.6% 1.65 (0.58) 2.95 (0.73)
– – 1–4 0–4
2.62 (4.12)
−4 to 20
18–90 (actual range) – – –
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Measures Survivor’s type of cancer The survivors’ type of cancer was obtained from state cancer registries. Breast and ovarian cancers served as gender-specific types of cancer (GTC+), whereas kidney cancer, lung cancer, non-Hodgkin’s lymphoma, and skin melanomas served as nongender-specific types of cancer (GTC-). Because we included only female survivors, breast and ovarian cancers were the genderspecific cancer types used for this analysis. The percentage of females among those diagnosed with nongender-specific types of cancer is between 38 and 46% [1]: 38.3% for kidney, 46.2% for lung and bronchus, 45.9% for NHL, and 43.4% for skin melanomas. Caregiver’s first-degree relative status The caregiver’s selfreported relationship type to the cancer survivor served as an indicator of their first-degree relative status. Mothers, sisters, and daughters were categorized as the first-degree relative (FDR+) group, whereas in-laws, friends, partners, and other nonblood-related individuals were categorized as the nonfirst-degree relative (FDR-) group. Caregiving stress The extent to which caregivers felt overwhelmed by care tasks and responsibilities was measured by the stress overload subscale of the Pearlin Stress Scale [18], which uses a four-point Likert-style response format (1=not at all, 4=very much). A sample item reads, “You have more things to do than you can handle.” The sum of the four items represented the level of caregiving stress, with higher scores reflecting greater stress. The composite score had acceptable internal consistency (α=0.72) [19]. Caregiver’s spirituality The degree to which caregivers reported finding meaning/peace and faith, namely, spiritual adjustment, was measured by the 12-item functional assessment of chronic illness therapy-spirituality (FACITSP) [20, 21], which uses a five-point Likert-style response format (0=not at all, 4=very much). A sample item reads, “I have a sense of purpose in my life.” The spirituality composite score was calculated by averaging the 12 items so that higher scores reflected greater levels of finding meaning and faith. In this study, the spirituality score had acceptable internal consistency (α=0.89) [19]. Caregiver’s psychological distress The degree to which caregivers reported mood disturbance was assessed using the profile of mood states—short form (POMS-SF) [22, 23]. Participants rated items for the past 4 weeks using a five-point Likert-style response format (0=not at all, 4=extremely). A psychological distress composite score was calculated by subtracting the summed mean of vigor
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items from the summed means of anger, anxiety, confusion, depression, and fatigue items, with higher scores on this composite reflecting a greater level of psychological distress [23]. The psychological distress composite score had relatively low but acceptable internal consistency in the present study (α=0.63) [19]. Covariates Selected variables, selected based on existing research suggesting that these are significant factors in psychological distress of caregivers [24], were included as covariates to test whether or not the effects of the main study variables on caregivers’ psychological and spiritual adjustment are significant above and beyond the variance explained by the covariates. These covariates include characteristics of the survivors, such as the levels of mental and physical functioning of their cancer survivor, and the stage of cancer and characteristics of caregivers, such as age, education, household income, and whether providing care at the time of survey completion. The self-reported levels of mental and physical functioning of the cancer survivors were measured using the medical outcomes study index (MOS SF-36) [25]. The mental functioning score was a composite of weighted vitality, social functioning, roleemotional, and mental health subscale scores. The physical functioning score was a composite of weighted physical functioning, role-physical, bodily pain, and general health subscale scores. Higher composite scores reflected better mental and physical functioning, thus the caregiver is less likely to experience stress.
Analysis plan Hierarchical regression analyses were conducted to test the effects of GTC, FDR, caregiving stress, and caregiver’s spirituality on caregiver’s psychological distress. Two sets of covariates were tested before the main study variables were tested. Namely, the survivor’s characteristics (i.e., levels of cancer survivor’s mental and physical functioning and stage of cancer) were entered into the equation in Step 1, followed by caregiver’s characteristics (i.e., caregiver age, education level, household income, and current caregiving status) in Step 2. In Step 3, the main effect of study variables (i.e., GTC, FDR, caregiving stress, and caregiver spirituality) were entered, followed by the twoway interaction terms in Step 4. To investigate further significant interaction effects with caregiving stress or caregiver’s spirituality, post hoc probing as described by Aiken and West [26] was conducted using spirituality scores transformed to reflect high (+1 SD) and low (−1 SD) levels of spirituality. High spirituality was calculated by subtracting one SD below the mean from the centered spirituality value; low spirituality
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was calculated by subtracting one SD above the mean from the centered spirituality value [26]. These transformed spirituality values were then used to recompute the interaction terms (e.g., high spirituality×caregiving stress, low spirituality×caregiving stress, high spirituality×GTC, high spirituality×FDR). Significant interactions were plotted using the transformed values in the regression equations. The two post hoc regression lines (e.g., one for high spirituality and the other for low spirituality) were then plotted, with psychological distress regressed on caregiving stress, the transformed scores for high and low levels of spirituality, and the respective spirituality–stress interaction variables. The same post hoc regression methods were used to plot lines for other significant interaction effects.
Results Descriptive information of the study variables and covariates are shown in Table 1. The level of mental functioning of the
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cancer survivors was comparable to the mean of the US general population, whereas their physical functioning was comparable to the 25th percentile of the population (MOS SF-36) [25]. As shown in Table 2, among the two sets of covariates, caregiver’s characteristics, such as age and income, rather than survivor’s characteristics, were significantly associated with caregiver’s psychological distress. Among the main study variables shown in Step 3, the main effects of GTC, caregiving stress, and caregiver’s spirituality on psychological distress were significant above and beyond the effects of the covariates. The GTC+ group (m=1.98, SD=3.41) reported a lower level of psychological distress than the GTC- group (m=3.17, SD=4.81). Greater levels of caregiving stress and lower levels of spirituality of the caregiver related to higher psychological distress. Of the two-way interactions, only two were significant. The interaction between GTC and caregiver’s spirituality (Fig. 3) indicated that the effect of low spirituality on higher psychological distress was stronger among the GTCgroup (β = −0.60) than the GTC+ group (β = −0.54).
Table 2 Hierarchical regression analyses on psychological distress Psychological distress β Step 1: covariates: cancer survivor’s characteristics Mental functioning Physical functioning Stage of cancer Step 2: covariates: caregiver’s characteristics Age Education Household income Current caregiving Step 3: main effects Gender-specific type of cancer (GTC) First-degree relative status (FDR) Caregiving stress (CS) Caregiver’s spirituality (CgSp) Step 4: two-way interaction effects GTC×FDR GTC×CS GTC×CgSp FDR×CS FDR×CgSp CS×CgSp
ΔR2 =0.022 −0.06 −0.06 0.12 ΔR2 =0.055** −0.16 −0.04 0.18 0.01 ΔR2 =0.406*** −0.11 0.01 0.28 −0.11 ΔR2 =0.032** 0.00 0.02 0.20 0.02 0.11 −0.15
t −0.92 −0.90 1.87**** −2.49** −0.57 2.79** 0.09 −2.17* 0.27 5.44*** −2.17* −0.02 0.19 2.32* 0.20 1.12 −3.00**
N=252; β=standardized regression coefficient; stage of cancer: 1=local, 2=regional, and 3=distant; education: 0=high school degree or lower degree, 1=college or advanced degree; household income: 0=less than $39,999, 1=greater than $40,000; current caregiving: 1=currently providing care, 0=currently not providing care; GTC: 1=gender-specific types of cancer (i.e., breast or ovarian cancer), 0=nongender-specific types of cancer (i.e., kidney, lung, NHL, or skin cancer); and FDR: 1=first-degree relatives of cancer survivor, 0=nonfirst-degree relatives of cancer survivor. *p
