Copyright B 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins
Mabel Q. H. Leow, BSc Nsg (Honors) Moon-Fai Chan, PhD, CStat Sally W. C. Chan, PhD
Predictors of Change in Quality of Life of Family Caregivers of Patients Near the End of Life With Advanced Cancer K E Y
W O R D S
Background: Caregiving for a person with cancer at end of life can be stressful
Cancer
physically and emotionally. Understanding the predictors of change in family
Community
caregivers’ quality of life (QoL) is important in facilitating the development of
Family carers
interventions to help these family caregivers. Objective: The aim of this study was
Hospice
to examine the change in QoL of family caregivers of home hospice patients in
Palliative care
Singapore near the end of life with advanced cancer from baseline to after 2 months.
Quality of life
Methods: This was a longitudinal survey. Ninety-three caregivers were surveyed. Instruments included the Caregiver Quality of Life IndexYCancer, Social Support Questionnaire, and Spiritual Perspective Scale. Results: Caregivers’ spiritual-related interactions scores increased from baseline to 2 months using paired t test (t = 2.33, P = .02). Multivariate regression analysis showed that caregivers with higher social support satisfaction ($ = .60, P = .000) and who had a religion predicted ($ = .55, P = .001) higher QoL. Caregivers of patients diagnosed with breast cancer and cancer in the female reproductive organs ($ = j.33, P = .03) predicted lower QoL. Conclusion: This study elucidated the importance of caregivers’ social support satisfaction during their caregiving journey. There is a need to enhance spiritual care for caregivers. Implications for practice: Support for caregivers could be increased by organizing mutual support groups and having volunteers to befriend caregivers. Spiritual care could be enhanced by regular assessment of spiritual needs, offering open discussions and sharing on spirituality and religion, and facilitating contacts with religious groups if caregivers required.
Author Affiliations: Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore. This study was funded by the Singapore Cancer Society (grant WBS:R545-000-040-592). The authors have no conflicts of interest to disclose.
Predictors of Change in QoL of Family Caregivers
Correspondence: Mabel Q. H. Leow, BSc Nsg (Honors), Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, Level 2, Clinical Research Centre, Block MD 11, 10 Medical Dr, Singapore 117597 ([email protected]). Accepted for publication August 13, 2013. DOI: 10.1097/NCC.0000000000000101
Cancer NursingTM, Vol. 37, No. 5, 2014
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
n
391
C
ancer is the leading cause of death globally and accounts for 7.6 million deaths yearly (13% of all deaths).1 In Singapore, cancer is also the leading cause of death.2 In addition, the mean annual number of cancer deaths has been on the rise.3 In Singapore, apart from hospital and institutional care, home hospices that provide palliative care services are available free of charge for terminally ill people with a prognosis of less than 12 months.4 The palliative team consists of a multidisciplinary team with a physician, nurse, and medical social worker. A primary nurse is assigned to each patient, who would provide regular weekly to monthly home visits. Quality of life (QoL) has been considered as a very important outcome in end-of-life as palliative care services endeavor to improve the life satisfaction of patients and their caregivers.5,6 Studies have examined QoL and its determinants among caregivers of patients at end-of-life stage, but results have been inconclusive. Studies showed contentious results to whether caregivers’ demographic factors (eg, gender, age) and patient caregiving needs (eg, functionality, caregiving demands) were predictors of QoL.7Y11 Especially in Asian societies, family is the first line of support for patients. Family members are expected to take on the responsibilities of caring for the patient. Caregiving can be stressful physically and emotionally and has been found to place tremendous burden on the entire family.12 As a result, caregivers’ QoL could be impacted. At present, there is a paucity of studies from Asian countries that focus on family caregivers of a terminally ill person with advanced cancer.
n
Literature Review
The World Health Organization defined QoL as individuals’ perceived satisfaction with life, with consideration of their cultural, social, and environmental situation.13 Many studies have examined the influence of caregivers’ sociodemographic characteristics on their QoL.7,10,11 The literature generally supported that female caregivers,7,11 spousal caregivers,10,14 caregivers with poorer health statuses,15,16 caregivers with limited finances,17,18 and caregivers who had been providing care for a longer period had poorer QoL.7,19 Patients’ characteristics could have an impact on caregivers’ QoL. Studies found that patients with poor functional status and closer proximity to death7,8 were associated with poorer caregivers’ QoL. Patients who had poorer functional status led to more caregiving needs, which increased caregiver burden and poorer QoL.20 A study in Taiwan found no significant relationship between patients’ age and caregivers’ QoL.7 Social support included both qualitative social support (informational support, emotional support, tangible support, positive social interaction, and affectionate support) and quantitative social support (the number of friends available and the frequency of contact).15 Most studies concluded that higher social support satisfaction resulted in better QoL,15,17,18 although 1 study showed no relationship between both factors.19 Two studies concurred that both qualitative support and quantitative support were 392 n Cancer NursingTM, Vol. 37, No. 5, 2014
equally important in ensuring that caregivers maintained high levels of QoL.8,15 Spirituality was defined as the relationship of the caregivers with God and their level of life satisfaction and purpose.15,16 The impact of spirituality on QoL has not been largely studied. Two studies found that the perception of a closer relationship with God and caregivers’ level of life satisfaction and purpose were associated with higher QoL.15,16 Kitrungrote and Cohen21 conducted a systematic review (SR) on QoL of family caregivers of patients with cancer and found that QoL of caregivers ranged from low to relatively high. The SR suggested that the impact of caregivers’ characteristics such as age, education, and length of caregiving on caregivers’ QoL was inconclusive. This variability was attributed to the different instruments used in measuring QoL in the reviewed studies, such as the RAND Short Form 36, Quality of Life IndexYCancer version, Caregivers’ Quality of Life Index, and Caregiver Quality of Life IndexYCancer (CQOLC). Patients being in the different stages of cancer and undergoing different types of treatment might also influence the findings in the SR. The majority of the reviewed studies were cross-sectional studies,9,15,19 conducted in Western countries, and focused on caregivers of terminally ill hospice patients. Two longitudinal studies were conducted in the Western countries.8,16 Axelsson and Sjo¨de´n8 recruited 37 participants in their study, whereas Gill et al16 had 58 participants. Only 1 study was conducted in the Asian region (Taiwan),8 and 167 family caregivers were recruited. The study measured caregivers’ QoL, caregivers’ demographic characteristics, patients’ caregiving demands, caregivers’ psychological resources, and caregivers’ appraisal of the caregiver situation, every 2 weeks to understand the relationship between these factors. This revealed a paucity of studies on caregivers’ QoL in Singapore or Asian region. Kitrungrote and Cohen21 emphasized that longitudinal studies on family caregivers’ QoL were important to allow researchers to encapsulate the real-time changes in QoL and the factors influencing such changes. The knowledge generated from longitudinal studies could enable healthcare professionals to have a more in-depth understanding of the caregivers’ journey to plan interventions to help these caregivers. In this study, it was proposed that change in caregivers’ QoL could be influenced by caregivers’ demographics, patients’ demographics, patients’ caregiving demands and functional status, caregivers’ social support, and caregivers’ spirituality.
n
The Study
Aim The aim of this study was to examine the change in QoL of family caregivers caring for home hospice patients in Singapore near the end of life with advanced cancer from baseline to after 2 months. The objectives were to: 1. examine the change in QoL, social support, and spirituality, from baseline to after 2 months; and
Leow et al
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
2. identify the predictors of change in QoL from baseline to after 2 months.
Design This was a longitudinal survey to uncover the predictors that influence change in caregivers’ QoL. Survey data were collected at 2 time points: baseline and 2 months later. Two months was chosen as previous studies had shown that QoL of caregivers did not change quickly,8,9,16 and it was expected that there could be a change in QoL after 2 months.
Participants A convenience sample of family caregivers was recruited from 4 home hospice organizations in Singapore. Patients enrolled into a home hospice were certified by the primary physician as having a prognosis of 12 months or less. Newly admitted and current caregivers were recruited. The duration of their admission into the home hospice was taken into account in the study. The inclusion criteria of participants were as follows: primary family caregiver of a person (based on hospice records who was chosen during enrolment into the hospice) with advance (stage 4) cancer and a prognosis of at least 3 months; able to communicate in English or Mandarin, and older than 21 years. Exclusion criteria were domestic helpers and caregivers with known mental health problems or cognitive impairment. The power of the study was based on the regression model as a regression analysis was used for the study. Based on Tang’s15 study, the $ value for social support satisfaction was chosen for sample calculation as it was found to have the greatest correlation with caregivers’ QoL. A $ value of .4 was expected, and a sample size of 44 was required to achieve 80% power at 5% significance level.22
Data Collection The study was conducted from July 2011 to June 2012. The staff at the study venues identified potential participants. Those who agreed to participate in the study were referred to the research team. Caregivers were also recruited at caregiver psychoeducation classes conducted by the home care organizations. The psychoeducation class was a 5-hour session conducted by the home hospice nurses for caregivers to learn physical skills of caregiving. After the caregivers verbally agreed to participate in the study, one of the researchers met up with them at a place of their convenience, gave further details on the study, answered any questions the caregiver had, and obtained written consent from them. Baseline data were then obtained. English-speaking caregivers were administered the English survey, and Mandarinspeaking caregivers were administered the Chinese survey. The researcher met the participants 2 months later to conduct the follow-up survey. The same researcher conducted all the surveys to ensure standardization of procedure. Content validity of the survey questionnaires was sought from a panel of 5 experts in the area of palliative care (2 doctors, 2 nurses, and 1 social worker) using the Content Validity Index23
Predictors of Change in QoL of Family Caregivers
to ensure relevance of the questionnaires in the Singapore culture. The questionnaires were found to have high content validity. Internal consistency was conducted using Cronbach’s " for all the scales. Caregiver QoL was measured by the CQOLC.24 The scale consisted of 4 subscales: burden, disruptiveness, positive adaptation, and financial concerns. There were 35 items rated on a 5-point Likert scale. Higher scores indicated better QoL. It had been used in studies conducted in Asian countries, and good psychometric properties have been reported (test-retest: 0.95, Cronbach’s " = .91).8 In this study, the CQOLC had a content validity of 89%. Internal consistency (Cronbach’s ") of both English and Chinese surveys at baseline was .87, and it was .90 at follow-up. Social support was measured by the Social Support Questionnaire.25 The scale consisted of 2 subscales: qualitative social support (social support satisfaction) and quantitative social support (the number of friends available). There were 6 items in each subscale. Items were rated on a 6-point Likert scale. Higher scores indicated higher social support satisfaction and number of social support. The scale has been used in Asian studies on caregivers (eg, see Chan et al26) and on caregivers of cancer patients,27 with good psychometric properties reported in these studies (Cronbach’s " = .91Y.93). In this study, the Social Support Questionnaire had a content validity of 92%. Internal consistency (Cronbach’s ") of both English and Chinese surveys at baseline was .94, and it was .96 at follow-up. Spirituality of caregiver was measured by the Spiritual Perspective Scale (SPS).27 It consisted of 10 items rated on a 6-point Likert scale. There were 2 subscales: spiritual-related activities (4 items) and spiritual beliefs (6 items). Higher scores indicated higher levels of spirituality. The SPS had a test-retest of 0.83 to 0.93, and an Cronbach’s " greater than .90.28,29 It has been used on patients at end-of-life care.30,31 In this study, the SPS had a content validity of 97%. Internal consistency (Cronbach’s ") of both English and Chinese surveys at baseline and follow-up was .95. Patient caregiving demand was measured by the Caregiving Demands Scale.31 It consisted of 5 items. Items 1 to 4 were rated on a 4-point Likert scale to measure amount of help the patient required. Item 5 used a 3-point Likert scale to measure hours of care the caregiver provided. Higher scores represented higher caregiving demands. The questionnaire has been used in end-oflife-care studies in Asia.8,10 Patients’ functional status was measured by the Eastern Cooperative Oncology Group (ECOG) method of measuring patients’ functional status.32 It consisted of 1 item and used a 5-point Likert scale. Patients were rated from whether they were fully independent and active or completely disabled. It has been used in a study conducted in Taiwan13 to measure patients’ functional status. Family caregivers’ sociodemographic characteristics were collected. They included age, gender, marital status, race, religion, relationship to the patient, financial status, education status, health status, household income per capital, and duration of caregiving. Patient characteristics were also collected and included age, gender, religion, type and duration since diagnosis, and duration with home hospice. Cancer NursingTM, Vol. 37, No. 5, 2014
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
n
393
Ethical Considerations Ethical approval was obtained from the University and the study venues prior to commencement of the study. The purpose of the study was explained to the participants before the study. They were advised that their participation was voluntary and that they had the freedom to withdraw from the study at any time. Participants were informed that their identities and research data would be kept confidential. Written consent was obtained from them.
Data Analysis The Statistical Package for the Social Sciences for Windows version 18 (SPSS Inc, Chicago, Illinois) was used. A perprotocol analysis was conducted, and only data from participants who participated in the follow-up were included in the analysis. Descriptive statistics were used to describe the participants’ profiles and their characteristics. Normality tests were conducted to ensure that data were normal before parametric tests were used. Paired t test was used to describe the changes in caregivers’ QoL, social support, and spirituality over time. Independent t test, analysis of variance (ANOVA), and correlations were used to uncover the factors that had a relationship with QoL. Factors that had a significant relationship with QoL in the univariate tests were included into the multivariate regression analysis to identify those associated with changes in QoL. A P G .05 was used to determine if the result was significant.33
n
Results
Participants Ninety-three participants were recruited and completed the baseline measures. Table 1 summarizes their sociodemographic data and the patients’ characteristics. The majority of the family caregivers were females (71.0%, n = 66). They were caring for their parents (61.3%, n = 57). The mean age of the caregivers was 48.79 (SD, 12.69) years (range, 21Y83 years). Half (50.5%, n = 47) of the caregivers had a part-time or full-time employment. About half (53.8%, n = 50) had a foreign domestic helper employed from Indonesia, Myanmar, or the Philippines to help care for the patient. Two-thirds of the patients (61.3%, n = 57) were females, and the mean age was 71.81 (SD, 13.35) years (range, 30Y95 years). On average, the patients had been diagnosed with cancer for 16.03 (SD, 17.60) months. They had been with the home hospice service for an average of 4.55 (SD, 6.63) months. The patients had a wide range of cancer diagnoses, with lung cancer (29%, n = 27) being the highest, followed by colorectal cancer (16.1%, n = 15). Female patients with female-related cancers were significantly younger than patients with other types of cancers (t = 2.85, P = .005), and the caregivers were more likely to be males (# 2 = 5.74, P = .023). Patients’ ECOG performance status had significant decline in the follow-up (t = j1.833, P = .007), which showed that their functional status and physical condition deteriorated over time. However, caregivers’ in394 n Cancer NursingTM, Vol. 37, No. 5, 2014
volvement in care remained constant (baseline: mean, 5.5 [SD, 2.3]; follow-up: mean, 5.6 [SD, 2.3]). Of the 93 recruits, 48 of the participants (51.6%) completed the follow-up survey. Forty-five participants (48.7%) dropped out from the study because of reasons such as the patient passed away, the caregiver was busy, or the patient was critically ill. The Figure illustrates the recruitment process and the reasons for dropout. We compared the demographic characteristics of the completed and dropout group to understand if it affected the dropout and found no significant differences in all caregiver and patient demographics between the 2 groups: caregiver demographics: age (t = 0.25, P = .80), gender (# 2 = 1.80, P = .18), marital status (# 2 = 0.03, P = .87), race (# 2 = 1.06, P = .30), religion (# 2 = 0.03, P = .86), relationship with patient (# 2 = 3.59, P = .17), and education (# 2 = 3.27, P = .20); patients’ demographics: age (t = j0.53, P = .60), gender (# 2 = 0.45, P = .50), and religion (# 2 = 0.15, P = .70).
Caregivers’ QoL At baseline, the caregivers’ mean total CQOLC score was 86.5 (SD, 24.1; range, 26Y132) of a possible total score of 140, which could be considered as average (Table 2). There was no significant difference between the baseline and the 2-month follow-up total CQOLC scores, although there was a slight increase in scores at follow-up (mean, 89.5 [SD, 23.2]; range, 45Y137). Quality-of-life scores were normal using the KolmogorovSmirnov test (baseline: F = 0.054, P = .2; follow-up: F = 0.09, P = .2). At baseline, the positive adaptation domain scored the highest, which suggested that caregivers had high positive adaption, and the burden domain scored the lowest, which indicated that caregivers had high levels of burden. At follow-up, the disruptiveness domain scored the highest, which suggested that caregivers experienced less disruptiveness, and the burden domain again scored the lowest. There was a reduction in the positive adaption domain scores at follow-up, which suggested that caregivers had lower positive adaptation. However, there was no significant difference between the baseline and 2-month follow-up for all CQOLC domain scores. t Test and ANOVA showed that there was no statistically significant association between caregiver and patient sociodemographics with caregiver’s QoL. However, descriptive data showed lower CQOLC scores (97 points, 5% of score) in male caregivers when compared with females (P = .114).
Social Support For social support, caregivers had an average of 2.24 (SD, 1.45) persons providing support to them at baseline (of a maximum of 6), and 2.28 (SD, 1.57) at 2-month follow-up in areas such as relieving stress, helping them feel relax, counting on them, accepting them, being there when they were feeling down, and consoling them when they were upset. Caregivers largely obtained social support from their friends (32.3%), followed by siblings (26.6%), children (14.8%), extended family members (8.85%), spouse (8.3%), parents (6.8%), healthcare professional, and others
Leow et al
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Table 1 & Caregiver (n = 93) and Patient (n = 93) Demographics
Gender Male Female Age, y Mean (SD) Range Marital status Single Married Race Chinese Others Religion No Yes Education level GPrimary school (PSLE) Secondary school (O/N level) Tertiary education Employment status Not working Working (full- or part-time) Presence of chronic illness No Yes Relationship with patient Child Spouse Others Live in domestic helper No Yes Income per capital, S$ Mean (SD) Range Duration of caregiving provided, mo Mean (SD) Range ECOG performance status (baseline) 0Y2 (able to care for self ) 3Y4 (unable to care for self) ECOG performance status (follow-up) 0Y2 (able to care for self ) 3Y4 (unable to care for self) Inpatient hospitalization last 2 mo (baseline) No Yes Inpatient hospitalization last 2 mo (follow-up) No Yes
Caregiver, n (%)
Patient, n (%)
27 (29.0) 66 (71.0)
36 (38.7) 57 (61.3)
49.0 (12.7) 21Y83
71.8 (13.4) 30Y95
38 (40.9) 55 (59.1) 79 (84.9) 14 (15.1) 13 (14.0) 80 (86.0)
5 (5.4) 88 (94.6)
16 (17.2) 35 (37.6) 42 (45.2)
Table 1 & Caregiver (n = 93) and Patient
(n = 93) Demographics, Continued Caregiver, n (%)
Diagnosis Lung Colorectal Ear, nose, throat Female reproductive system Liver Breast Others Months since diagnosis Mean (SD) Range Duration with home hospice, mo Mean (SD) Range
Patient, n (%) 27 15 8 8 6 4 25
(29.0) (16.1) (8.6) (14.0) (6.5) (7.0) (26.9)
16.0 (17.6) 0.7Y97.0 4.6 (6.6) 0Y33
Abbreviations: ECOG, Eastern Cooperative Oncology Group (measures patient’s physical functional status); O/N, ‘‘Ordinary’’/ ‘‘Normal’’ level in the Cambridge General Certificate of Education; PSLE, Primary School Leaving Examination.
(2.5%). In general, caregivers were satisfied with their social support (baseline: mean, 29.6 [SD, 6.9] [possible range, 6Y36]; follow-up: mean, 29.5 [SD, 7.12]) (Table 2). The differences between baseline and follow-up did not reach a significant level. Social support satisfaction and social support number scores were normal using the D’Agostino-Pearson test.34 Social support satisfaction scores had positive correlation with number of social support (r = 0.36, P G .000). Caregivers with higher number of social support had higher satisfaction toward social support. Female caregivers (t = j2.92, P = .004), married caregivers (t = j2.50, P = .01), caregivers with chronic illness (t = j2.04, P = .04), older caregivers (r = 0.28, P = .007), older patient (r = 0.30, P = .004), inpatient hospitalization of patient within the past 2 months (t = j2.05, P = .04), and overall SPS scores (r = 0.28, P = .007) had significant association with higher social support satisfaction. Caregivers with higher education (F = 4.51, P = .01) and those who had a religion (t = j2.23, P = .03) had significantly greater number of supporting persons.
46 (49.5) 47 (50.5) 66 (71.0) 27 (29.0) 57 (61.3) 23 (24.7) 13 (14.0) 43 (46.2) 50 (53.8) 1120.7 (1540.2) 0Y8000
12.2 (18.1) 0Y97
Spirituality 56 (60.2) 37 (39.8)
25 (52.1) 23 (47.9)
44 (47.3) 49 (52.7)
30 (63.8) 18 (36.2) (continues)
Predictors of Change in QoL of Family Caregivers
The SPS scores (mean, 43.1 [SD, 13.4]; possible range, 10Y60) at baseline measure were considered satisfactory. Descriptive data revealed an increase in overall spirituality scores (mean, 44.1 [SD, 13.1]) at follow-up, but the differences were not statistically significant (Table 2). Spiritual Perspective Scale scores were normal using the D’Agostino-Pearson test.34 The scores in the spirituality domains (spiritual views and spiritual-related interactions) were transformed to a standard score of 36. Descriptive data showed an increase in spiritual-related interactions and spiritual views over time. Caregivers were found to score above average for spiritual views, which was defined as their awareness of one’s inner self and a sense of connection to a higher being (baseline: mean, 27.3 [SD, 7.6]; follow-up: mean, 27.5 [SD, 7.9]), and spiritual-related interactions (baseline: mean, 23.7 [SD, 9.9]; Cancer NursingTM, Vol. 37, No. 5, 2014
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
n
395
Figure n Participant retention rate. follow-up: mean, 24.8 [SD, 13.4]) at both baseline and follow-up. There was a statistically significant improvement of caregivers’ spiritual-related interactions scores from baseline (mean, 23.7 [SD, 9.9]) to 2-month (mean, 24.8 [SD, 13.4]; t = 2.33, P = .02). Non-Chinese caregivers (11 Malays, 1 Indian, and 1 white) (t = j9.10, P = .000), caregivers who had a religion (t = 6.59, P = .000), caregivers who had been in the home hospice for a longer duration (t = j0.219, P = .04), and patients who had a religion (t = 2.571, P = .01) had higher SPS scores. Change in spirituality was negatively correlated with CQOLC scores and almost met statistical significance (r = j0.27, P = .06). There was a significant negative correlation between spiritual-related activities subscale and CQOLC scores (r = j0.35, P = .02).This suggested that caregivers engaged more in spirituality-related activities as their QoL declined.
Determinants of Change in QoL To determine which variables were associated with change in caregivers’ QoL scores, a multivariate regression analysis was performed. First, a univariate analysis was used to examine any significant correlation/differences on caregivers’ QoL with each
variable measured in this study. Using Pearson correlation with percentage change in QoL scores, statistical significance was found in the percentage change in social support satisfaction (r = 0.443, P = .000). t Test and ANOVA showed that religion (t = j2.75, P = .009) and patient diagnosis (F = 2.62, P = .03) were significantly associated with changes in caregivers’ QoL, respectively (Table 3). A multiple regression (enter) analysis was used, and all significant variables were included to identify a model to predict caregivers’ QoL. The results showed that caregivers’ social support satisfaction levels ($ = .60, P = .000), religion ($ = .55, P = .001), and patient diagnosis ($ = j.33, P = .03) were significant variables (Table 4). Caregivers who had increased social support satisfaction and caregivers who had a religion had greater improvement in QoL. These 3 predictors of change in QoL were found to be independent of each other as the tolerance values were in acceptable level range from 0.48 (caregiver religion; patient diagnosis) to 0.97 (change in social support satisfaction). As patient diagnosis was found to influence caregivers’ QoL, a post hoc test using least significant difference was done to understand the type of cancer that predicted lower QoL. Results showed that breast cancer predicted more negative changes
Table 2 & Quality of Life, Social Support, Spirituality of Caregivers, and Patients’ Caregiving Demands Measurement Quality of life Burden Disruptiveness Positive adaptation Financial concerns Social support No. of social support Satisfaction Spiritual Perspective Scale Spiritual-related interactions Spiritual views Patient’s caregiving demands (caregiver’s involvement in care) a
Baseline
2-mo Follow-up
Possible Range
Mean (SD)
Mean (SD)
0Y120 0Y40 0Y40 0Y40 0Y40
86.5 (24.1) 23.6 (11.1) 25.4 (9.6) 25.9 (8.9) 24.0 (14.8)
89.5 24.2 27.4 25.5 25.1
(23.2) (8.0) (8.4) (9.5) (14.3)
j1.13 j0.51 j1.39 0.39 j0.66
.26 .61 .17 .70 .51
2.24 (1.5) 29.6 (6.9) 43.1 (13.4) 23.7 (9.9) 27.3 (7.6) 5.5 (2.3)
2.28 29.5 44.1 24.8 27.5 5.6
(1.6) (7.1) (13.1) (13.4) (7.9) (2.3)
j0.50 0.09 j1.54 j2.33 j0.46 j0.75
.73 .93 .13 .024a .65 .45
0Y6 6Y36 10Y60 6Y36 6Y36 1Y15
Paired t Test Statistics
P
P G .05 (from baseline to follow-up).
396 n Cancer NursingTM, Vol. 37, No. 5, 2014
Leow et al
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Table 3 & Univariate Analysis of Determinants of Change on Caregivers’ Quality of Life Determinants
Test
Social support satisfaction Change in social support satisfaction No. of social support Change in no. of social support Spirituality Change in spirituality Caregiver characteristics Age Gender Marital status Race Religion Education level Employment status Presence of chronic illness Relationship with patient Live in domestic helper Income per capita Duration of caregiving Patient characteristics Age Gender Religion Diagnosis ECOG performance status Change in ECOG performance status Inpatient hospitalization last 2 mo (follow-up) Months since diagnosis Duration with home hospice Caregiving demands
Statistics
P
Correlation Correlation Correlation Correlation Correlation Correlation
0.04 0.60 0.01 0.19 0.20 j0.27
.78 .000a .97 .22 .17 .06
Correlation t Test t Test t Test t Test ANOVA t Test t Test ANOVA t Test Correlation Correlation
0.23 0.44 j0.63 j1.32 j2.75 1.18 j1.35 0.18 2.32 j0.19 j0.03 0.003
.12 .67 .53 .19 .009a .32 .18 .86 .11 .85 .83 .98
Correlation t Test t Test ANOVA t Test t Test t Test Correlation Correlation Correlation
j0.05 j1.80 1.18 3.97 0.40 1.00 1.39 0.17 0.08 j0.03
.74 .08 .25 .003a .69 .32 .17 .24 .61 .85
Abbreviations: ANOVA, analysis of variance; ECOG, Eastern Cooperative Oncology Group. a P G .01.
in QoL than lung cancer (P = .04), and cancer in the female reproductive organs (ovary, cervix, and endometrium) predicted more negative changes in QoL compared with colorectal cancer (P = .007).
n
determinants of their QoL. The study found that caregivers’ QoL, social support, and spirituality remained constant from baseline to after 2 months. Caregivers with religion, higher social support satisfaction, and patients diagnosed with nonfemale cancers predicted higher caregivers’ QoL after 2 months.
Caregivers’ QoL
Discussion
The study aimed to examine the QoL of family caregivers of patients near the end of life with advanced cancer and to identify
In this study, the QoL of caregivers improved in the second assessment, although the differences were not statistically significant. This was despite the findings that patients’ ECOG
Table 4 & Multiple Regression Analysis on Predictors of Change in Caregivers’ Quality of Lifea Determinant
Standardized $
Caregiver religion Patient diagnosis Percentage change in social support satisfaction
.55 j0.33 0.60
t Statistics 3.63 j2.20 5.63
P
Toleranceb
.001c .03d .000c
0.48 0.48 0.97
a
Adjusted R 2 = 0.511, F = 15.69. Values close to 1 refer to more independent with other determinants. c P G .01. d P G .05. b
Predictors of Change in QoL of Family Caregivers
Cancer NursingTM, Vol. 37, No. 5, 2014
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
n
397
performance status declined. The present study differed from that of previous studies, which showed that caregivers’ QoL either remained stable16,22 or declined over time.8,9 The increase in QoL scores could be due to the retention of caregivers who coped better with caregiving over time. This study found that caregivers had the lowest scores in their QoL burden domain, which suggested that caregivers experienced high levels of burden. Past studies have also found that caregivers experienced high levels of burden from physical care and emotional burden from the impending death of the patient.35 In this present study, caregivers had improved scores in the disruptiveness domain in the follow-up assessment when compared with baseline assessment. This could be attributed to the increase in caregivers’ confidence and experience in caregiving.36 As caregivers learned to set a daily routine, they might find new strategies to cope with the caregiving role, which led to reduced disruption of life and better perceived QoL. A wide range in QoL score was observed in this study. Some caregivers reported an almost perfect score for their QoL, and some reported very low scores. Literature suggested that caregivers’ QoL could be influenced by many factors, such as how caregivers perceived the caregiving situation, their hope, and their ability to cope,10,37 which was not measured in this study. As QoL is a subjective perception, further studies are needed to understand factors that influence their perception. Caregivers in this study appeared to have slightly higher QoL scores (G5 points using the CQOLC questionnaire) when compared with 2 previous similar studies conducted in Taiwan8 and the United States.15 This could be due to the home hospice nurses from the referral sites referring caregivers who had better QoL to this study. Caregivers in Singapore might also experience better QoL because about 50% of the participants have domestic helpers to help with the household chores and the physical care of the patient. In Singapore, foreign domestic helpers are more affordable when compared with some countries. This might help to reduce the impact of caregiving on the caregivers.
Predictors of Caregivers’ QoL The present study found that an increase in social support satisfaction predicted positive changes in caregivers’ QoL. The findings concurred with many previous studies.15,17,18 Tang’s15 study suggested that qualitative support and quantitative social support were equally important in ensuring that caregivers enjoy high levels of QoL. However, the present study found only qualitative social support predicted QoL. This finding might suggest that the quality of support that the person received was more important than the number of people providing support. In this study, female caregiver, married caregivers, older caregivers, and caregivers caring for a patient who was hospitalized in the past 2 months reported higher social support satisfaction. Higher satisfaction with caregivers of a patient who was hospitalized could be due to the increased concerns from family members, friends, and healthcare professionals when the patient was hospitalized. Caregivers with higher education might have wider social network, and those who had a religion might obtain sup398 n Cancer NursingTM, Vol. 37, No. 5, 2014
port from their religious groups. Thus, they had a higher satisfaction toward their social support. Further studies could look into the social support dynamics of caregivers and the factors that influence caregivers’ satisfaction with their social support. Caregivers who had a religion reported better QoL in the follow-up. There was a statistically significant improvement of caregivers’ spiritual-related interactions scores from baseline. These might suggest that caregivers turned to religion and spiritual interactions to help them cope with the caregiving. There is a need to enhance spiritual care for caregivers. Healthcare professionals need to strengthen their knowledge and competency in the assessment of spiritual care needs and the provision of spiritual care. Although caregivers with religion had better QoL, an increase in overall SPS and spiritual-related activities’ scores was found to be negatively correlated with their QoL. This might suggest caregivers had increased needs for comfort and support from a higher power as their QoL declined, but the engagement in spiritualrelated interactions did not result in better QoL. This finding contradicted another study, which found that higher spirituality was associated with better QoL.15 Further studies are required to understand the relationship between QoL and spirituality. The patient’s cancer type was a predictor of caregivers’ change in QoL. Caregivers of a person with female-related cancers such as breast, cervical, and ovarian cancer were associated with poorer caregivers’ QoL. This study found these cancers more prevalent in younger women, and the caregivers were more likely to be males. The caregivers might have difficulties coping with the patients’ diagnosis as the patients were younger. Male caregivers could experience poorer QoL as they might have to manage both work and caregiving, because they were the breadwinner. Because of the nuclear family structure in Singapore, caregivers were less likely to seek help from extended family members. More research studies need to be conducted on the impact of the type of cancer on caregivers’ QoL.
Caregiver and Patient Characteristics This study found that the percentage of unmarried caregivers was higher than those in previous studies.8,15,22 The patients were largely the participants’ parents. This could be related to the practice in Singapore where the duty of caregiving often rested on the unmarried children. They were perceived as having more time to care for the sick parent because they had less family commitments. In addition, the unmarried child usually stayed with the parents and was more likely to take up the caregiving role. The characteristics of the patients in the present study were similar to those in the Singapore cancer statistics, where the majority had a lung cancer diagnosis, followed by colorectal cancer.38 This is slightly different from the international statistics, where breast cancer takes the second place instead of colorectal cancer.1
n
Study Limitations
This study used a convenience sample, which could induce bias. There were also difficulties in retaining caregivers for the follow-up. The high dropout due to patients’ death showed that patients’
Leow et al
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
prognoses were highly unpredictable. It is important to acknowledge the challenges in conducting longitudinal studies. The high dropout of participants was largely due to death of the patient and caregivers’ refusal. Despite efforts to ensure recruitment of caregivers of patients with a prognosis of at least 3 months, about 28% of the patients died before the follow-up measure. This showed that the prognoses of patients were often inaccurate, as patients’ condition could deteriorate suddenly and rapidly, which is part of the cancer trajectory.39
Clinical Implications and Recommendations for Future Research
n
Healthcare professionals could encourage caregivers to seek social support from family members and friends. Future interventions could look into strategies to increase social support. Apart from organizing mutual support groups, volunteers from the public who were interested in being befrienders to support hospice caregivers could be trained to befriend and provide social support for caregivers. Caregivers of a female patient with breast cancer or cancer in the female reproductive system might require more support from healthcare professionals as they are at higher risk of lower QoL. Extra support could be provided by regular telephone calls and/or face-to-face counseling sessions. This study found that religion and spirituality were factors influencing caregivers’ QoL. The competencies of healthcare professionals in assessment of spiritual care needs and provision of spiritual care for caregivers could be enhanced by training and continuing professional development. Spiritual care could be promoted by regular assessment of clients’ spiritual needs and offering open discussions and sharing on spirituality and religion. Healthcare professionals could also provide information and/or facilitate contacts with needed resources, such as support groups or religious groups if caregivers desired so.40,41 The wide range of QoL scores in this study suggested that there are many factors influencing caregivers’ QoL. Further studies can seek to understand the impact of perception of caregiving hope, resilience, and caregivers’ perceived rewards of caregiving on caregivers’ QoL. More studies are needed to provide conclusive results on the effects of patients’ cancer type on QoL. Studies are also required to understand the relationship between caregivers’ religion, spirituality, and QoL. As many families in Singapore use foreign domestic helpers to assist in caregiving, future research could look into the QoL and needs of these domestic helpers.
n
Conclusion
This study described the QoL of family caregivers in Singapore and found that family caregivers’ perception of QoL was satisfactory and remained constant at 2-month follow-up. Over time, caregivers turned to spiritual activities to cope with caregiving. Patients’ cancer type predicted changes in caregivers’ QoL. This study elucidated the importance of caregivers’ social support satisfaction during their caregiving journey.
Predictors of Change in QoL of Family Caregivers
ACKNOWLEDGMENTS
The authors thank the staff in HCA Hospice Care, Assisi Hospice, Metta Hospice, and Singapore Cancer Society for assisting in participants’ recruitment. The authors also thank all the participants in the study.
References 1. GLOBOCAN 2008VFast Stats. GLOBOCAN Web site. http://globocan .iarc.fr/factsheets/populations/factsheet.asp?uno=900. Accessed July 16, 2012. 2. Principal causes of death. Ministry of Health Singapore Web site. http:// www.moh.gov.sg/content/moh_web/home/statistics/Health_Facts_Singapore/ Principal_Causes_of_Death.html. Accessed July 4, 2012. 3. Singapore Cancer Registry Interim Report. Trends in Cancer Incidences in Singapore 2004Y2008. National Registry of Disease Office Singapore Web site. http://www.nrdo.gov.sg/uploadedFiles/NRDO/Publications/Cancer_ Trends_Report0408_web_v2.pdf. Accessed September 22, 2010. 4. Hospice Care @ HCA. HCA Hospice Care Web site. http://www.hca.org .sg/services/care-hca. Accessed December 17, 2012. 5. WHO Definition of Palliative Care. World Health Organization Website http://www.who.int/cancer/palliative/definition/en/. Accessed August 31, 2009. 6. Steward AL, Teno J, Patrick DL, Lynn J. The concept of quality of life of dying persons in the context of health care. J Pain Symptom Manage. 1999; 17(2):93Y108. 7. Tang ST, Li C, Chen CC. Trajectory and determinants of the quality of life of family caregivers of terminally ill cancer patients in Taiwan. Qual Life Res. 2008;17(3):387Y395. 8. Axelsson B, Sjo¨de´n P. Quality of life of cancer patients and their spouses in palliative home care. Palliat Med. 1998;12(1):29Y39. 9. Tang ST, Li C. The important role of sense of coherence in relation to depressive symptoms for Taiwanese family caregivers of cancer patients at the end of life. J Psychosom Res. 2008;64(2):195Y203. 10. Luria DLL. An Investigation of Caregiver Burden in Primary Caregivers of Home Hospice Patients With Cancer Versus Non-cancer, Non-AIDS Diagnoses [doctoral dissertation]. Detroit, MI: Wayne State University; 2000. 11. Kim Y, Baker F, Spillers RL. Cancer caregivers’ quality of life: effects of gender, relationship, and appraisal. J Pain Symptom Manage. 2007;34(3): 294Y304. 12. Chan SW. Family caregiving in dementia: the Asian perspective of a global problem. Dement Geriatr Cogn Disord. 2010;30(6):469Y478. 13. World Health Organization. WHOQOL-BREF: introduction, administration, scoring and generic version of the assessment. 1996. http://www.who .int/mental_health/media/en/76.pdf. Accessed November 9, 2010. 14. Smeenk FW, de Witte LP, van Haastregt JC, Schipper RM, Biezemans HP, Crebolder HF. Transmural care of terminal cancer patients: effects on the quality of life of direct caregivers. Nurs Res. 1998;47(3):129Y136. 15. Tang W. Hospice family caregivers’ quality of life. J Clin Nurs. 2009;18(18): 2563Y2572. 16. Gill P, Kaur JS, Rummans T, Novetny PJ, Sloan JA. The hospice patient’s primary caregiver. What is their quality of life? J Psychosom Res. 2003; 55(5):445Y451. 17. Harding R, Higginson IJ. What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliat Med. 2003;17(1):63Y74. 18. Campbell HS, Sanson-Fisher R, Taylor-Brown J, Hayward L, Wang XS, Turner D. The cancer support person’s unmet needs survey. Cancer. 2009; 115(14):3351Y3359. 19. Meyers JL, Gray LN. The relationships between family primary caregiver characteristics and satisfaction with hospice care, quality of life, and burden. Oncol Nurs Forum. 2001;28(1):73Y82. 20. Rhee YS, Yu HJ, Park S, et al. Depression in family caregivers of cancer patients: the feeling of burden as a predictor of depression. J Clin Oncol. 2008;26(36):5890Y5895. 21. Kitrungrote L, Cohen MZ. Quality of life of family caregivers of patients with cancer: a literature review. Oncol Nurs Forum. 2006;33(3):625Y632.
Cancer NursingTM, Vol. 37, No. 5, 2014
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
n
399
22. Elashoff JD. nQuery Adviser. United Kingdom: Statistical Solutions; 2000. 23. Lawshe CH. A quantitative approach to content validity. Personnel Psychol. 1975;28(4):563Y575. 24. Weitzner MA, Jacobsen PB, Wagner HJ, Friedland J, Cox C. The Caregiver Quality of Life IndexYCancer (CQOLC) scale: development and validation of an instrument to measure quality of life of the family caregiver of patients with cancer. Qual Life Res. 1999;8(1Y2):55Y63. 25. Sarason IG, Sarason BR, Shearin EN, Pierce GR. A brief measure of social support: practical and theoretical implications. J Soc Pers Relat. 1987; 4(4):497Y510. 26. Chan S, Yip B, Tso S, Cheng BS, Tam W. Evaluation of a psychoeducation program for Chinese clients with schizophrenia and their family caregivers. Patient Educ Couns. 2009;76(1):67Y76. 27. Ownsworth T, Henderson L, Chambers SK. Social support buffers the impact of functional impairments on caregiver psychological well-being in the context of brain tumor and other cancers. Psychooncology. 2010;19(10): 1116Y1122. 28. Reed PG. Spirituality and well-being in terminally ill hospitalized adults. Res Nurs Health. 1987;10(5):335Y344. 29. Reed PG. Religiousness among terminally ill and healthy adults. Res Nurs Health. 1986;9(1):35Y42. 30. Reed PG, Rousseau E. Spiritual inquiry and well-being in life limiting illness. J Spiritual Religion Aging. 2007;19(4):81Y98. 31. Emanuel EJ, Fairclough DL, Slutsman J, Alpert H, Baldwin D, Emanuel LL. Assistance from family members, friends, paid care givers and volunteers in the care of terminally ill patients. N Engl J Med. 1999;341(13):956Y963.
400 n Cancer NursingTM, Vol. 37, No. 5, 2014
32. Ellison NM. Palliative Chemotherapy. Berger AM, Weissman D, Portenoy RK, eds. New York: Lippincott-Raven; 1998. 33. Plichta SB, Kelvin E. Munro’s Statistical Methods for Health Care Research. 6th ed. Philadelphia, PA: Lippincott Williams & Wilkins; 2013. 34. Sheskin DJ. Handbook of Parametric and Nonparametric Statistical Procedures. 5th ed. Boca Raton, FL: Chapman & Hall/CRC; 2011. 35. Funk L, Stajduhar KI, Toye C, Aoun S, Grande GE, Todd CJ. Part 2: homebased family caregiving at the end of life: a comprehensive review of published qualitative research (1998Y2008). Palliat Med. 2010;24(6):594Y607. 36. Mok E, Chan F, Chan V, Yeung E. Family experience caring for terminally ill patients with cancer in Hong Kong. Cancer Nurs. 2003;26(4):267Y275. 37. Grov EK, Dahl AA, Moum T, Fossa SD. Anxiety, depression, and quality of life in caregivers of patients with cancer in late palliative phase. Ann Oncol. 2005;16(7):1185Y1191. 38. Singapore Cancer Registry Interim Annual Registry Report. Trends in Cancer Incidence in Singapore 2006-2010. National Registry of Diseases Office Web site. http://www.nccs.com.sg/pat/file/Cancer_Trends_Report_ 2006_2010.pdf. Accessed June 26, 2011. 39. Lunney JR, Lynn J, Foley DJ, Lipson S, Guralnik JM. Patterns of functional decline at the end of life. JAMA. 2003;289(18):2387Y2392. 40. Puchalski C, Ferrell B, Virani R, et al. Improving the quality of spiritual care as a dimension of palliative care: the report of the consensus conference. J Palliat Med. 2009;12(10):885Y904. 41. Yardley SJ, Walshe CE, Parr A. Improving training in spiritual care: a qualitative study exploring patient perceptions of professional educational requirements. Palliat Med. 2009;23(7):601Y607.
Leow et al
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Mabel Q. H. Leow, BSc Nsg (Honors) Moon-Fai Chan, PhD, CStat Sally W. C. Chan, PhD
Predictors of Change in Quality of Life of Family Caregivers of Patients Near the End of Life With Advanced Cancer K E Y
W O R D S
Background: Caregiving for a person with cancer at end of life can be stressful
Cancer
physically and emotionally. Understanding the predictors of change in family
Community
caregivers’ quality of life (QoL) is important in facilitating the development of
Family carers
interventions to help these family caregivers. Objective: The aim of this study was
Hospice
to examine the change in QoL of family caregivers of home hospice patients in
Palliative care
Singapore near the end of life with advanced cancer from baseline to after 2 months.
Quality of life
Methods: This was a longitudinal survey. Ninety-three caregivers were surveyed. Instruments included the Caregiver Quality of Life IndexYCancer, Social Support Questionnaire, and Spiritual Perspective Scale. Results: Caregivers’ spiritual-related interactions scores increased from baseline to 2 months using paired t test (t = 2.33, P = .02). Multivariate regression analysis showed that caregivers with higher social support satisfaction ($ = .60, P = .000) and who had a religion predicted ($ = .55, P = .001) higher QoL. Caregivers of patients diagnosed with breast cancer and cancer in the female reproductive organs ($ = j.33, P = .03) predicted lower QoL. Conclusion: This study elucidated the importance of caregivers’ social support satisfaction during their caregiving journey. There is a need to enhance spiritual care for caregivers. Implications for practice: Support for caregivers could be increased by organizing mutual support groups and having volunteers to befriend caregivers. Spiritual care could be enhanced by regular assessment of spiritual needs, offering open discussions and sharing on spirituality and religion, and facilitating contacts with religious groups if caregivers required.
Author Affiliations: Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore. This study was funded by the Singapore Cancer Society (grant WBS:R545-000-040-592). The authors have no conflicts of interest to disclose.
Predictors of Change in QoL of Family Caregivers
Correspondence: Mabel Q. H. Leow, BSc Nsg (Honors), Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, Level 2, Clinical Research Centre, Block MD 11, 10 Medical Dr, Singapore 117597 ([email protected]). Accepted for publication August 13, 2013. DOI: 10.1097/NCC.0000000000000101
Cancer NursingTM, Vol. 37, No. 5, 2014
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
n
391
C
ancer is the leading cause of death globally and accounts for 7.6 million deaths yearly (13% of all deaths).1 In Singapore, cancer is also the leading cause of death.2 In addition, the mean annual number of cancer deaths has been on the rise.3 In Singapore, apart from hospital and institutional care, home hospices that provide palliative care services are available free of charge for terminally ill people with a prognosis of less than 12 months.4 The palliative team consists of a multidisciplinary team with a physician, nurse, and medical social worker. A primary nurse is assigned to each patient, who would provide regular weekly to monthly home visits. Quality of life (QoL) has been considered as a very important outcome in end-of-life as palliative care services endeavor to improve the life satisfaction of patients and their caregivers.5,6 Studies have examined QoL and its determinants among caregivers of patients at end-of-life stage, but results have been inconclusive. Studies showed contentious results to whether caregivers’ demographic factors (eg, gender, age) and patient caregiving needs (eg, functionality, caregiving demands) were predictors of QoL.7Y11 Especially in Asian societies, family is the first line of support for patients. Family members are expected to take on the responsibilities of caring for the patient. Caregiving can be stressful physically and emotionally and has been found to place tremendous burden on the entire family.12 As a result, caregivers’ QoL could be impacted. At present, there is a paucity of studies from Asian countries that focus on family caregivers of a terminally ill person with advanced cancer.
n
Literature Review
The World Health Organization defined QoL as individuals’ perceived satisfaction with life, with consideration of their cultural, social, and environmental situation.13 Many studies have examined the influence of caregivers’ sociodemographic characteristics on their QoL.7,10,11 The literature generally supported that female caregivers,7,11 spousal caregivers,10,14 caregivers with poorer health statuses,15,16 caregivers with limited finances,17,18 and caregivers who had been providing care for a longer period had poorer QoL.7,19 Patients’ characteristics could have an impact on caregivers’ QoL. Studies found that patients with poor functional status and closer proximity to death7,8 were associated with poorer caregivers’ QoL. Patients who had poorer functional status led to more caregiving needs, which increased caregiver burden and poorer QoL.20 A study in Taiwan found no significant relationship between patients’ age and caregivers’ QoL.7 Social support included both qualitative social support (informational support, emotional support, tangible support, positive social interaction, and affectionate support) and quantitative social support (the number of friends available and the frequency of contact).15 Most studies concluded that higher social support satisfaction resulted in better QoL,15,17,18 although 1 study showed no relationship between both factors.19 Two studies concurred that both qualitative support and quantitative support were 392 n Cancer NursingTM, Vol. 37, No. 5, 2014
equally important in ensuring that caregivers maintained high levels of QoL.8,15 Spirituality was defined as the relationship of the caregivers with God and their level of life satisfaction and purpose.15,16 The impact of spirituality on QoL has not been largely studied. Two studies found that the perception of a closer relationship with God and caregivers’ level of life satisfaction and purpose were associated with higher QoL.15,16 Kitrungrote and Cohen21 conducted a systematic review (SR) on QoL of family caregivers of patients with cancer and found that QoL of caregivers ranged from low to relatively high. The SR suggested that the impact of caregivers’ characteristics such as age, education, and length of caregiving on caregivers’ QoL was inconclusive. This variability was attributed to the different instruments used in measuring QoL in the reviewed studies, such as the RAND Short Form 36, Quality of Life IndexYCancer version, Caregivers’ Quality of Life Index, and Caregiver Quality of Life IndexYCancer (CQOLC). Patients being in the different stages of cancer and undergoing different types of treatment might also influence the findings in the SR. The majority of the reviewed studies were cross-sectional studies,9,15,19 conducted in Western countries, and focused on caregivers of terminally ill hospice patients. Two longitudinal studies were conducted in the Western countries.8,16 Axelsson and Sjo¨de´n8 recruited 37 participants in their study, whereas Gill et al16 had 58 participants. Only 1 study was conducted in the Asian region (Taiwan),8 and 167 family caregivers were recruited. The study measured caregivers’ QoL, caregivers’ demographic characteristics, patients’ caregiving demands, caregivers’ psychological resources, and caregivers’ appraisal of the caregiver situation, every 2 weeks to understand the relationship between these factors. This revealed a paucity of studies on caregivers’ QoL in Singapore or Asian region. Kitrungrote and Cohen21 emphasized that longitudinal studies on family caregivers’ QoL were important to allow researchers to encapsulate the real-time changes in QoL and the factors influencing such changes. The knowledge generated from longitudinal studies could enable healthcare professionals to have a more in-depth understanding of the caregivers’ journey to plan interventions to help these caregivers. In this study, it was proposed that change in caregivers’ QoL could be influenced by caregivers’ demographics, patients’ demographics, patients’ caregiving demands and functional status, caregivers’ social support, and caregivers’ spirituality.
n
The Study
Aim The aim of this study was to examine the change in QoL of family caregivers caring for home hospice patients in Singapore near the end of life with advanced cancer from baseline to after 2 months. The objectives were to: 1. examine the change in QoL, social support, and spirituality, from baseline to after 2 months; and
Leow et al
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
2. identify the predictors of change in QoL from baseline to after 2 months.
Design This was a longitudinal survey to uncover the predictors that influence change in caregivers’ QoL. Survey data were collected at 2 time points: baseline and 2 months later. Two months was chosen as previous studies had shown that QoL of caregivers did not change quickly,8,9,16 and it was expected that there could be a change in QoL after 2 months.
Participants A convenience sample of family caregivers was recruited from 4 home hospice organizations in Singapore. Patients enrolled into a home hospice were certified by the primary physician as having a prognosis of 12 months or less. Newly admitted and current caregivers were recruited. The duration of their admission into the home hospice was taken into account in the study. The inclusion criteria of participants were as follows: primary family caregiver of a person (based on hospice records who was chosen during enrolment into the hospice) with advance (stage 4) cancer and a prognosis of at least 3 months; able to communicate in English or Mandarin, and older than 21 years. Exclusion criteria were domestic helpers and caregivers with known mental health problems or cognitive impairment. The power of the study was based on the regression model as a regression analysis was used for the study. Based on Tang’s15 study, the $ value for social support satisfaction was chosen for sample calculation as it was found to have the greatest correlation with caregivers’ QoL. A $ value of .4 was expected, and a sample size of 44 was required to achieve 80% power at 5% significance level.22
Data Collection The study was conducted from July 2011 to June 2012. The staff at the study venues identified potential participants. Those who agreed to participate in the study were referred to the research team. Caregivers were also recruited at caregiver psychoeducation classes conducted by the home care organizations. The psychoeducation class was a 5-hour session conducted by the home hospice nurses for caregivers to learn physical skills of caregiving. After the caregivers verbally agreed to participate in the study, one of the researchers met up with them at a place of their convenience, gave further details on the study, answered any questions the caregiver had, and obtained written consent from them. Baseline data were then obtained. English-speaking caregivers were administered the English survey, and Mandarinspeaking caregivers were administered the Chinese survey. The researcher met the participants 2 months later to conduct the follow-up survey. The same researcher conducted all the surveys to ensure standardization of procedure. Content validity of the survey questionnaires was sought from a panel of 5 experts in the area of palliative care (2 doctors, 2 nurses, and 1 social worker) using the Content Validity Index23
Predictors of Change in QoL of Family Caregivers
to ensure relevance of the questionnaires in the Singapore culture. The questionnaires were found to have high content validity. Internal consistency was conducted using Cronbach’s " for all the scales. Caregiver QoL was measured by the CQOLC.24 The scale consisted of 4 subscales: burden, disruptiveness, positive adaptation, and financial concerns. There were 35 items rated on a 5-point Likert scale. Higher scores indicated better QoL. It had been used in studies conducted in Asian countries, and good psychometric properties have been reported (test-retest: 0.95, Cronbach’s " = .91).8 In this study, the CQOLC had a content validity of 89%. Internal consistency (Cronbach’s ") of both English and Chinese surveys at baseline was .87, and it was .90 at follow-up. Social support was measured by the Social Support Questionnaire.25 The scale consisted of 2 subscales: qualitative social support (social support satisfaction) and quantitative social support (the number of friends available). There were 6 items in each subscale. Items were rated on a 6-point Likert scale. Higher scores indicated higher social support satisfaction and number of social support. The scale has been used in Asian studies on caregivers (eg, see Chan et al26) and on caregivers of cancer patients,27 with good psychometric properties reported in these studies (Cronbach’s " = .91Y.93). In this study, the Social Support Questionnaire had a content validity of 92%. Internal consistency (Cronbach’s ") of both English and Chinese surveys at baseline was .94, and it was .96 at follow-up. Spirituality of caregiver was measured by the Spiritual Perspective Scale (SPS).27 It consisted of 10 items rated on a 6-point Likert scale. There were 2 subscales: spiritual-related activities (4 items) and spiritual beliefs (6 items). Higher scores indicated higher levels of spirituality. The SPS had a test-retest of 0.83 to 0.93, and an Cronbach’s " greater than .90.28,29 It has been used on patients at end-of-life care.30,31 In this study, the SPS had a content validity of 97%. Internal consistency (Cronbach’s ") of both English and Chinese surveys at baseline and follow-up was .95. Patient caregiving demand was measured by the Caregiving Demands Scale.31 It consisted of 5 items. Items 1 to 4 were rated on a 4-point Likert scale to measure amount of help the patient required. Item 5 used a 3-point Likert scale to measure hours of care the caregiver provided. Higher scores represented higher caregiving demands. The questionnaire has been used in end-oflife-care studies in Asia.8,10 Patients’ functional status was measured by the Eastern Cooperative Oncology Group (ECOG) method of measuring patients’ functional status.32 It consisted of 1 item and used a 5-point Likert scale. Patients were rated from whether they were fully independent and active or completely disabled. It has been used in a study conducted in Taiwan13 to measure patients’ functional status. Family caregivers’ sociodemographic characteristics were collected. They included age, gender, marital status, race, religion, relationship to the patient, financial status, education status, health status, household income per capital, and duration of caregiving. Patient characteristics were also collected and included age, gender, religion, type and duration since diagnosis, and duration with home hospice. Cancer NursingTM, Vol. 37, No. 5, 2014
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
n
393
Ethical Considerations Ethical approval was obtained from the University and the study venues prior to commencement of the study. The purpose of the study was explained to the participants before the study. They were advised that their participation was voluntary and that they had the freedom to withdraw from the study at any time. Participants were informed that their identities and research data would be kept confidential. Written consent was obtained from them.
Data Analysis The Statistical Package for the Social Sciences for Windows version 18 (SPSS Inc, Chicago, Illinois) was used. A perprotocol analysis was conducted, and only data from participants who participated in the follow-up were included in the analysis. Descriptive statistics were used to describe the participants’ profiles and their characteristics. Normality tests were conducted to ensure that data were normal before parametric tests were used. Paired t test was used to describe the changes in caregivers’ QoL, social support, and spirituality over time. Independent t test, analysis of variance (ANOVA), and correlations were used to uncover the factors that had a relationship with QoL. Factors that had a significant relationship with QoL in the univariate tests were included into the multivariate regression analysis to identify those associated with changes in QoL. A P G .05 was used to determine if the result was significant.33
n
Results
Participants Ninety-three participants were recruited and completed the baseline measures. Table 1 summarizes their sociodemographic data and the patients’ characteristics. The majority of the family caregivers were females (71.0%, n = 66). They were caring for their parents (61.3%, n = 57). The mean age of the caregivers was 48.79 (SD, 12.69) years (range, 21Y83 years). Half (50.5%, n = 47) of the caregivers had a part-time or full-time employment. About half (53.8%, n = 50) had a foreign domestic helper employed from Indonesia, Myanmar, or the Philippines to help care for the patient. Two-thirds of the patients (61.3%, n = 57) were females, and the mean age was 71.81 (SD, 13.35) years (range, 30Y95 years). On average, the patients had been diagnosed with cancer for 16.03 (SD, 17.60) months. They had been with the home hospice service for an average of 4.55 (SD, 6.63) months. The patients had a wide range of cancer diagnoses, with lung cancer (29%, n = 27) being the highest, followed by colorectal cancer (16.1%, n = 15). Female patients with female-related cancers were significantly younger than patients with other types of cancers (t = 2.85, P = .005), and the caregivers were more likely to be males (# 2 = 5.74, P = .023). Patients’ ECOG performance status had significant decline in the follow-up (t = j1.833, P = .007), which showed that their functional status and physical condition deteriorated over time. However, caregivers’ in394 n Cancer NursingTM, Vol. 37, No. 5, 2014
volvement in care remained constant (baseline: mean, 5.5 [SD, 2.3]; follow-up: mean, 5.6 [SD, 2.3]). Of the 93 recruits, 48 of the participants (51.6%) completed the follow-up survey. Forty-five participants (48.7%) dropped out from the study because of reasons such as the patient passed away, the caregiver was busy, or the patient was critically ill. The Figure illustrates the recruitment process and the reasons for dropout. We compared the demographic characteristics of the completed and dropout group to understand if it affected the dropout and found no significant differences in all caregiver and patient demographics between the 2 groups: caregiver demographics: age (t = 0.25, P = .80), gender (# 2 = 1.80, P = .18), marital status (# 2 = 0.03, P = .87), race (# 2 = 1.06, P = .30), religion (# 2 = 0.03, P = .86), relationship with patient (# 2 = 3.59, P = .17), and education (# 2 = 3.27, P = .20); patients’ demographics: age (t = j0.53, P = .60), gender (# 2 = 0.45, P = .50), and religion (# 2 = 0.15, P = .70).
Caregivers’ QoL At baseline, the caregivers’ mean total CQOLC score was 86.5 (SD, 24.1; range, 26Y132) of a possible total score of 140, which could be considered as average (Table 2). There was no significant difference between the baseline and the 2-month follow-up total CQOLC scores, although there was a slight increase in scores at follow-up (mean, 89.5 [SD, 23.2]; range, 45Y137). Quality-of-life scores were normal using the KolmogorovSmirnov test (baseline: F = 0.054, P = .2; follow-up: F = 0.09, P = .2). At baseline, the positive adaptation domain scored the highest, which suggested that caregivers had high positive adaption, and the burden domain scored the lowest, which indicated that caregivers had high levels of burden. At follow-up, the disruptiveness domain scored the highest, which suggested that caregivers experienced less disruptiveness, and the burden domain again scored the lowest. There was a reduction in the positive adaption domain scores at follow-up, which suggested that caregivers had lower positive adaptation. However, there was no significant difference between the baseline and 2-month follow-up for all CQOLC domain scores. t Test and ANOVA showed that there was no statistically significant association between caregiver and patient sociodemographics with caregiver’s QoL. However, descriptive data showed lower CQOLC scores (97 points, 5% of score) in male caregivers when compared with females (P = .114).
Social Support For social support, caregivers had an average of 2.24 (SD, 1.45) persons providing support to them at baseline (of a maximum of 6), and 2.28 (SD, 1.57) at 2-month follow-up in areas such as relieving stress, helping them feel relax, counting on them, accepting them, being there when they were feeling down, and consoling them when they were upset. Caregivers largely obtained social support from their friends (32.3%), followed by siblings (26.6%), children (14.8%), extended family members (8.85%), spouse (8.3%), parents (6.8%), healthcare professional, and others
Leow et al
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Table 1 & Caregiver (n = 93) and Patient (n = 93) Demographics
Gender Male Female Age, y Mean (SD) Range Marital status Single Married Race Chinese Others Religion No Yes Education level GPrimary school (PSLE) Secondary school (O/N level) Tertiary education Employment status Not working Working (full- or part-time) Presence of chronic illness No Yes Relationship with patient Child Spouse Others Live in domestic helper No Yes Income per capital, S$ Mean (SD) Range Duration of caregiving provided, mo Mean (SD) Range ECOG performance status (baseline) 0Y2 (able to care for self ) 3Y4 (unable to care for self) ECOG performance status (follow-up) 0Y2 (able to care for self ) 3Y4 (unable to care for self) Inpatient hospitalization last 2 mo (baseline) No Yes Inpatient hospitalization last 2 mo (follow-up) No Yes
Caregiver, n (%)
Patient, n (%)
27 (29.0) 66 (71.0)
36 (38.7) 57 (61.3)
49.0 (12.7) 21Y83
71.8 (13.4) 30Y95
38 (40.9) 55 (59.1) 79 (84.9) 14 (15.1) 13 (14.0) 80 (86.0)
5 (5.4) 88 (94.6)
16 (17.2) 35 (37.6) 42 (45.2)
Table 1 & Caregiver (n = 93) and Patient
(n = 93) Demographics, Continued Caregiver, n (%)
Diagnosis Lung Colorectal Ear, nose, throat Female reproductive system Liver Breast Others Months since diagnosis Mean (SD) Range Duration with home hospice, mo Mean (SD) Range
Patient, n (%) 27 15 8 8 6 4 25
(29.0) (16.1) (8.6) (14.0) (6.5) (7.0) (26.9)
16.0 (17.6) 0.7Y97.0 4.6 (6.6) 0Y33
Abbreviations: ECOG, Eastern Cooperative Oncology Group (measures patient’s physical functional status); O/N, ‘‘Ordinary’’/ ‘‘Normal’’ level in the Cambridge General Certificate of Education; PSLE, Primary School Leaving Examination.
(2.5%). In general, caregivers were satisfied with their social support (baseline: mean, 29.6 [SD, 6.9] [possible range, 6Y36]; follow-up: mean, 29.5 [SD, 7.12]) (Table 2). The differences between baseline and follow-up did not reach a significant level. Social support satisfaction and social support number scores were normal using the D’Agostino-Pearson test.34 Social support satisfaction scores had positive correlation with number of social support (r = 0.36, P G .000). Caregivers with higher number of social support had higher satisfaction toward social support. Female caregivers (t = j2.92, P = .004), married caregivers (t = j2.50, P = .01), caregivers with chronic illness (t = j2.04, P = .04), older caregivers (r = 0.28, P = .007), older patient (r = 0.30, P = .004), inpatient hospitalization of patient within the past 2 months (t = j2.05, P = .04), and overall SPS scores (r = 0.28, P = .007) had significant association with higher social support satisfaction. Caregivers with higher education (F = 4.51, P = .01) and those who had a religion (t = j2.23, P = .03) had significantly greater number of supporting persons.
46 (49.5) 47 (50.5) 66 (71.0) 27 (29.0) 57 (61.3) 23 (24.7) 13 (14.0) 43 (46.2) 50 (53.8) 1120.7 (1540.2) 0Y8000
12.2 (18.1) 0Y97
Spirituality 56 (60.2) 37 (39.8)
25 (52.1) 23 (47.9)
44 (47.3) 49 (52.7)
30 (63.8) 18 (36.2) (continues)
Predictors of Change in QoL of Family Caregivers
The SPS scores (mean, 43.1 [SD, 13.4]; possible range, 10Y60) at baseline measure were considered satisfactory. Descriptive data revealed an increase in overall spirituality scores (mean, 44.1 [SD, 13.1]) at follow-up, but the differences were not statistically significant (Table 2). Spiritual Perspective Scale scores were normal using the D’Agostino-Pearson test.34 The scores in the spirituality domains (spiritual views and spiritual-related interactions) were transformed to a standard score of 36. Descriptive data showed an increase in spiritual-related interactions and spiritual views over time. Caregivers were found to score above average for spiritual views, which was defined as their awareness of one’s inner self and a sense of connection to a higher being (baseline: mean, 27.3 [SD, 7.6]; follow-up: mean, 27.5 [SD, 7.9]), and spiritual-related interactions (baseline: mean, 23.7 [SD, 9.9]; Cancer NursingTM, Vol. 37, No. 5, 2014
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
n
395
Figure n Participant retention rate. follow-up: mean, 24.8 [SD, 13.4]) at both baseline and follow-up. There was a statistically significant improvement of caregivers’ spiritual-related interactions scores from baseline (mean, 23.7 [SD, 9.9]) to 2-month (mean, 24.8 [SD, 13.4]; t = 2.33, P = .02). Non-Chinese caregivers (11 Malays, 1 Indian, and 1 white) (t = j9.10, P = .000), caregivers who had a religion (t = 6.59, P = .000), caregivers who had been in the home hospice for a longer duration (t = j0.219, P = .04), and patients who had a religion (t = 2.571, P = .01) had higher SPS scores. Change in spirituality was negatively correlated with CQOLC scores and almost met statistical significance (r = j0.27, P = .06). There was a significant negative correlation between spiritual-related activities subscale and CQOLC scores (r = j0.35, P = .02).This suggested that caregivers engaged more in spirituality-related activities as their QoL declined.
Determinants of Change in QoL To determine which variables were associated with change in caregivers’ QoL scores, a multivariate regression analysis was performed. First, a univariate analysis was used to examine any significant correlation/differences on caregivers’ QoL with each
variable measured in this study. Using Pearson correlation with percentage change in QoL scores, statistical significance was found in the percentage change in social support satisfaction (r = 0.443, P = .000). t Test and ANOVA showed that religion (t = j2.75, P = .009) and patient diagnosis (F = 2.62, P = .03) were significantly associated with changes in caregivers’ QoL, respectively (Table 3). A multiple regression (enter) analysis was used, and all significant variables were included to identify a model to predict caregivers’ QoL. The results showed that caregivers’ social support satisfaction levels ($ = .60, P = .000), religion ($ = .55, P = .001), and patient diagnosis ($ = j.33, P = .03) were significant variables (Table 4). Caregivers who had increased social support satisfaction and caregivers who had a religion had greater improvement in QoL. These 3 predictors of change in QoL were found to be independent of each other as the tolerance values were in acceptable level range from 0.48 (caregiver religion; patient diagnosis) to 0.97 (change in social support satisfaction). As patient diagnosis was found to influence caregivers’ QoL, a post hoc test using least significant difference was done to understand the type of cancer that predicted lower QoL. Results showed that breast cancer predicted more negative changes
Table 2 & Quality of Life, Social Support, Spirituality of Caregivers, and Patients’ Caregiving Demands Measurement Quality of life Burden Disruptiveness Positive adaptation Financial concerns Social support No. of social support Satisfaction Spiritual Perspective Scale Spiritual-related interactions Spiritual views Patient’s caregiving demands (caregiver’s involvement in care) a
Baseline
2-mo Follow-up
Possible Range
Mean (SD)
Mean (SD)
0Y120 0Y40 0Y40 0Y40 0Y40
86.5 (24.1) 23.6 (11.1) 25.4 (9.6) 25.9 (8.9) 24.0 (14.8)
89.5 24.2 27.4 25.5 25.1
(23.2) (8.0) (8.4) (9.5) (14.3)
j1.13 j0.51 j1.39 0.39 j0.66
.26 .61 .17 .70 .51
2.24 (1.5) 29.6 (6.9) 43.1 (13.4) 23.7 (9.9) 27.3 (7.6) 5.5 (2.3)
2.28 29.5 44.1 24.8 27.5 5.6
(1.6) (7.1) (13.1) (13.4) (7.9) (2.3)
j0.50 0.09 j1.54 j2.33 j0.46 j0.75
.73 .93 .13 .024a .65 .45
0Y6 6Y36 10Y60 6Y36 6Y36 1Y15
Paired t Test Statistics
P
P G .05 (from baseline to follow-up).
396 n Cancer NursingTM, Vol. 37, No. 5, 2014
Leow et al
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Table 3 & Univariate Analysis of Determinants of Change on Caregivers’ Quality of Life Determinants
Test
Social support satisfaction Change in social support satisfaction No. of social support Change in no. of social support Spirituality Change in spirituality Caregiver characteristics Age Gender Marital status Race Religion Education level Employment status Presence of chronic illness Relationship with patient Live in domestic helper Income per capita Duration of caregiving Patient characteristics Age Gender Religion Diagnosis ECOG performance status Change in ECOG performance status Inpatient hospitalization last 2 mo (follow-up) Months since diagnosis Duration with home hospice Caregiving demands
Statistics
P
Correlation Correlation Correlation Correlation Correlation Correlation
0.04 0.60 0.01 0.19 0.20 j0.27
.78 .000a .97 .22 .17 .06
Correlation t Test t Test t Test t Test ANOVA t Test t Test ANOVA t Test Correlation Correlation
0.23 0.44 j0.63 j1.32 j2.75 1.18 j1.35 0.18 2.32 j0.19 j0.03 0.003
.12 .67 .53 .19 .009a .32 .18 .86 .11 .85 .83 .98
Correlation t Test t Test ANOVA t Test t Test t Test Correlation Correlation Correlation
j0.05 j1.80 1.18 3.97 0.40 1.00 1.39 0.17 0.08 j0.03
.74 .08 .25 .003a .69 .32 .17 .24 .61 .85
Abbreviations: ANOVA, analysis of variance; ECOG, Eastern Cooperative Oncology Group. a P G .01.
in QoL than lung cancer (P = .04), and cancer in the female reproductive organs (ovary, cervix, and endometrium) predicted more negative changes in QoL compared with colorectal cancer (P = .007).
n
determinants of their QoL. The study found that caregivers’ QoL, social support, and spirituality remained constant from baseline to after 2 months. Caregivers with religion, higher social support satisfaction, and patients diagnosed with nonfemale cancers predicted higher caregivers’ QoL after 2 months.
Caregivers’ QoL
Discussion
The study aimed to examine the QoL of family caregivers of patients near the end of life with advanced cancer and to identify
In this study, the QoL of caregivers improved in the second assessment, although the differences were not statistically significant. This was despite the findings that patients’ ECOG
Table 4 & Multiple Regression Analysis on Predictors of Change in Caregivers’ Quality of Lifea Determinant
Standardized $
Caregiver religion Patient diagnosis Percentage change in social support satisfaction
.55 j0.33 0.60
t Statistics 3.63 j2.20 5.63
P
Toleranceb
.001c .03d .000c
0.48 0.48 0.97
a
Adjusted R 2 = 0.511, F = 15.69. Values close to 1 refer to more independent with other determinants. c P G .01. d P G .05. b
Predictors of Change in QoL of Family Caregivers
Cancer NursingTM, Vol. 37, No. 5, 2014
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
n
397
performance status declined. The present study differed from that of previous studies, which showed that caregivers’ QoL either remained stable16,22 or declined over time.8,9 The increase in QoL scores could be due to the retention of caregivers who coped better with caregiving over time. This study found that caregivers had the lowest scores in their QoL burden domain, which suggested that caregivers experienced high levels of burden. Past studies have also found that caregivers experienced high levels of burden from physical care and emotional burden from the impending death of the patient.35 In this present study, caregivers had improved scores in the disruptiveness domain in the follow-up assessment when compared with baseline assessment. This could be attributed to the increase in caregivers’ confidence and experience in caregiving.36 As caregivers learned to set a daily routine, they might find new strategies to cope with the caregiving role, which led to reduced disruption of life and better perceived QoL. A wide range in QoL score was observed in this study. Some caregivers reported an almost perfect score for their QoL, and some reported very low scores. Literature suggested that caregivers’ QoL could be influenced by many factors, such as how caregivers perceived the caregiving situation, their hope, and their ability to cope,10,37 which was not measured in this study. As QoL is a subjective perception, further studies are needed to understand factors that influence their perception. Caregivers in this study appeared to have slightly higher QoL scores (G5 points using the CQOLC questionnaire) when compared with 2 previous similar studies conducted in Taiwan8 and the United States.15 This could be due to the home hospice nurses from the referral sites referring caregivers who had better QoL to this study. Caregivers in Singapore might also experience better QoL because about 50% of the participants have domestic helpers to help with the household chores and the physical care of the patient. In Singapore, foreign domestic helpers are more affordable when compared with some countries. This might help to reduce the impact of caregiving on the caregivers.
Predictors of Caregivers’ QoL The present study found that an increase in social support satisfaction predicted positive changes in caregivers’ QoL. The findings concurred with many previous studies.15,17,18 Tang’s15 study suggested that qualitative support and quantitative social support were equally important in ensuring that caregivers enjoy high levels of QoL. However, the present study found only qualitative social support predicted QoL. This finding might suggest that the quality of support that the person received was more important than the number of people providing support. In this study, female caregiver, married caregivers, older caregivers, and caregivers caring for a patient who was hospitalized in the past 2 months reported higher social support satisfaction. Higher satisfaction with caregivers of a patient who was hospitalized could be due to the increased concerns from family members, friends, and healthcare professionals when the patient was hospitalized. Caregivers with higher education might have wider social network, and those who had a religion might obtain sup398 n Cancer NursingTM, Vol. 37, No. 5, 2014
port from their religious groups. Thus, they had a higher satisfaction toward their social support. Further studies could look into the social support dynamics of caregivers and the factors that influence caregivers’ satisfaction with their social support. Caregivers who had a religion reported better QoL in the follow-up. There was a statistically significant improvement of caregivers’ spiritual-related interactions scores from baseline. These might suggest that caregivers turned to religion and spiritual interactions to help them cope with the caregiving. There is a need to enhance spiritual care for caregivers. Healthcare professionals need to strengthen their knowledge and competency in the assessment of spiritual care needs and the provision of spiritual care. Although caregivers with religion had better QoL, an increase in overall SPS and spiritual-related activities’ scores was found to be negatively correlated with their QoL. This might suggest caregivers had increased needs for comfort and support from a higher power as their QoL declined, but the engagement in spiritualrelated interactions did not result in better QoL. This finding contradicted another study, which found that higher spirituality was associated with better QoL.15 Further studies are required to understand the relationship between QoL and spirituality. The patient’s cancer type was a predictor of caregivers’ change in QoL. Caregivers of a person with female-related cancers such as breast, cervical, and ovarian cancer were associated with poorer caregivers’ QoL. This study found these cancers more prevalent in younger women, and the caregivers were more likely to be males. The caregivers might have difficulties coping with the patients’ diagnosis as the patients were younger. Male caregivers could experience poorer QoL as they might have to manage both work and caregiving, because they were the breadwinner. Because of the nuclear family structure in Singapore, caregivers were less likely to seek help from extended family members. More research studies need to be conducted on the impact of the type of cancer on caregivers’ QoL.
Caregiver and Patient Characteristics This study found that the percentage of unmarried caregivers was higher than those in previous studies.8,15,22 The patients were largely the participants’ parents. This could be related to the practice in Singapore where the duty of caregiving often rested on the unmarried children. They were perceived as having more time to care for the sick parent because they had less family commitments. In addition, the unmarried child usually stayed with the parents and was more likely to take up the caregiving role. The characteristics of the patients in the present study were similar to those in the Singapore cancer statistics, where the majority had a lung cancer diagnosis, followed by colorectal cancer.38 This is slightly different from the international statistics, where breast cancer takes the second place instead of colorectal cancer.1
n
Study Limitations
This study used a convenience sample, which could induce bias. There were also difficulties in retaining caregivers for the follow-up. The high dropout due to patients’ death showed that patients’
Leow et al
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
prognoses were highly unpredictable. It is important to acknowledge the challenges in conducting longitudinal studies. The high dropout of participants was largely due to death of the patient and caregivers’ refusal. Despite efforts to ensure recruitment of caregivers of patients with a prognosis of at least 3 months, about 28% of the patients died before the follow-up measure. This showed that the prognoses of patients were often inaccurate, as patients’ condition could deteriorate suddenly and rapidly, which is part of the cancer trajectory.39
Clinical Implications and Recommendations for Future Research
n
Healthcare professionals could encourage caregivers to seek social support from family members and friends. Future interventions could look into strategies to increase social support. Apart from organizing mutual support groups, volunteers from the public who were interested in being befrienders to support hospice caregivers could be trained to befriend and provide social support for caregivers. Caregivers of a female patient with breast cancer or cancer in the female reproductive system might require more support from healthcare professionals as they are at higher risk of lower QoL. Extra support could be provided by regular telephone calls and/or face-to-face counseling sessions. This study found that religion and spirituality were factors influencing caregivers’ QoL. The competencies of healthcare professionals in assessment of spiritual care needs and provision of spiritual care for caregivers could be enhanced by training and continuing professional development. Spiritual care could be promoted by regular assessment of clients’ spiritual needs and offering open discussions and sharing on spirituality and religion. Healthcare professionals could also provide information and/or facilitate contacts with needed resources, such as support groups or religious groups if caregivers desired so.40,41 The wide range of QoL scores in this study suggested that there are many factors influencing caregivers’ QoL. Further studies can seek to understand the impact of perception of caregiving hope, resilience, and caregivers’ perceived rewards of caregiving on caregivers’ QoL. More studies are needed to provide conclusive results on the effects of patients’ cancer type on QoL. Studies are also required to understand the relationship between caregivers’ religion, spirituality, and QoL. As many families in Singapore use foreign domestic helpers to assist in caregiving, future research could look into the QoL and needs of these domestic helpers.
n
Conclusion
This study described the QoL of family caregivers in Singapore and found that family caregivers’ perception of QoL was satisfactory and remained constant at 2-month follow-up. Over time, caregivers turned to spiritual activities to cope with caregiving. Patients’ cancer type predicted changes in caregivers’ QoL. This study elucidated the importance of caregivers’ social support satisfaction during their caregiving journey.
Predictors of Change in QoL of Family Caregivers
ACKNOWLEDGMENTS
The authors thank the staff in HCA Hospice Care, Assisi Hospice, Metta Hospice, and Singapore Cancer Society for assisting in participants’ recruitment. The authors also thank all the participants in the study.
References 1. GLOBOCAN 2008VFast Stats. GLOBOCAN Web site. http://globocan .iarc.fr/factsheets/populations/factsheet.asp?uno=900. Accessed July 16, 2012. 2. Principal causes of death. Ministry of Health Singapore Web site. http:// www.moh.gov.sg/content/moh_web/home/statistics/Health_Facts_Singapore/ Principal_Causes_of_Death.html. Accessed July 4, 2012. 3. Singapore Cancer Registry Interim Report. Trends in Cancer Incidences in Singapore 2004Y2008. National Registry of Disease Office Singapore Web site. http://www.nrdo.gov.sg/uploadedFiles/NRDO/Publications/Cancer_ Trends_Report0408_web_v2.pdf. Accessed September 22, 2010. 4. Hospice Care @ HCA. HCA Hospice Care Web site. http://www.hca.org .sg/services/care-hca. Accessed December 17, 2012. 5. WHO Definition of Palliative Care. World Health Organization Website http://www.who.int/cancer/palliative/definition/en/. Accessed August 31, 2009. 6. Steward AL, Teno J, Patrick DL, Lynn J. The concept of quality of life of dying persons in the context of health care. J Pain Symptom Manage. 1999; 17(2):93Y108. 7. Tang ST, Li C, Chen CC. Trajectory and determinants of the quality of life of family caregivers of terminally ill cancer patients in Taiwan. Qual Life Res. 2008;17(3):387Y395. 8. Axelsson B, Sjo¨de´n P. Quality of life of cancer patients and their spouses in palliative home care. Palliat Med. 1998;12(1):29Y39. 9. Tang ST, Li C. The important role of sense of coherence in relation to depressive symptoms for Taiwanese family caregivers of cancer patients at the end of life. J Psychosom Res. 2008;64(2):195Y203. 10. Luria DLL. An Investigation of Caregiver Burden in Primary Caregivers of Home Hospice Patients With Cancer Versus Non-cancer, Non-AIDS Diagnoses [doctoral dissertation]. Detroit, MI: Wayne State University; 2000. 11. Kim Y, Baker F, Spillers RL. Cancer caregivers’ quality of life: effects of gender, relationship, and appraisal. J Pain Symptom Manage. 2007;34(3): 294Y304. 12. Chan SW. Family caregiving in dementia: the Asian perspective of a global problem. Dement Geriatr Cogn Disord. 2010;30(6):469Y478. 13. World Health Organization. WHOQOL-BREF: introduction, administration, scoring and generic version of the assessment. 1996. http://www.who .int/mental_health/media/en/76.pdf. Accessed November 9, 2010. 14. Smeenk FW, de Witte LP, van Haastregt JC, Schipper RM, Biezemans HP, Crebolder HF. Transmural care of terminal cancer patients: effects on the quality of life of direct caregivers. Nurs Res. 1998;47(3):129Y136. 15. Tang W. Hospice family caregivers’ quality of life. J Clin Nurs. 2009;18(18): 2563Y2572. 16. Gill P, Kaur JS, Rummans T, Novetny PJ, Sloan JA. The hospice patient’s primary caregiver. What is their quality of life? J Psychosom Res. 2003; 55(5):445Y451. 17. Harding R, Higginson IJ. What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliat Med. 2003;17(1):63Y74. 18. Campbell HS, Sanson-Fisher R, Taylor-Brown J, Hayward L, Wang XS, Turner D. The cancer support person’s unmet needs survey. Cancer. 2009; 115(14):3351Y3359. 19. Meyers JL, Gray LN. The relationships between family primary caregiver characteristics and satisfaction with hospice care, quality of life, and burden. Oncol Nurs Forum. 2001;28(1):73Y82. 20. Rhee YS, Yu HJ, Park S, et al. Depression in family caregivers of cancer patients: the feeling of burden as a predictor of depression. J Clin Oncol. 2008;26(36):5890Y5895. 21. Kitrungrote L, Cohen MZ. Quality of life of family caregivers of patients with cancer: a literature review. Oncol Nurs Forum. 2006;33(3):625Y632.
Cancer NursingTM, Vol. 37, No. 5, 2014
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
n
399
22. Elashoff JD. nQuery Adviser. United Kingdom: Statistical Solutions; 2000. 23. Lawshe CH. A quantitative approach to content validity. Personnel Psychol. 1975;28(4):563Y575. 24. Weitzner MA, Jacobsen PB, Wagner HJ, Friedland J, Cox C. The Caregiver Quality of Life IndexYCancer (CQOLC) scale: development and validation of an instrument to measure quality of life of the family caregiver of patients with cancer. Qual Life Res. 1999;8(1Y2):55Y63. 25. Sarason IG, Sarason BR, Shearin EN, Pierce GR. A brief measure of social support: practical and theoretical implications. J Soc Pers Relat. 1987; 4(4):497Y510. 26. Chan S, Yip B, Tso S, Cheng BS, Tam W. Evaluation of a psychoeducation program for Chinese clients with schizophrenia and their family caregivers. Patient Educ Couns. 2009;76(1):67Y76. 27. Ownsworth T, Henderson L, Chambers SK. Social support buffers the impact of functional impairments on caregiver psychological well-being in the context of brain tumor and other cancers. Psychooncology. 2010;19(10): 1116Y1122. 28. Reed PG. Spirituality and well-being in terminally ill hospitalized adults. Res Nurs Health. 1987;10(5):335Y344. 29. Reed PG. Religiousness among terminally ill and healthy adults. Res Nurs Health. 1986;9(1):35Y42. 30. Reed PG, Rousseau E. Spiritual inquiry and well-being in life limiting illness. J Spiritual Religion Aging. 2007;19(4):81Y98. 31. Emanuel EJ, Fairclough DL, Slutsman J, Alpert H, Baldwin D, Emanuel LL. Assistance from family members, friends, paid care givers and volunteers in the care of terminally ill patients. N Engl J Med. 1999;341(13):956Y963.
400 n Cancer NursingTM, Vol. 37, No. 5, 2014
32. Ellison NM. Palliative Chemotherapy. Berger AM, Weissman D, Portenoy RK, eds. New York: Lippincott-Raven; 1998. 33. Plichta SB, Kelvin E. Munro’s Statistical Methods for Health Care Research. 6th ed. Philadelphia, PA: Lippincott Williams & Wilkins; 2013. 34. Sheskin DJ. Handbook of Parametric and Nonparametric Statistical Procedures. 5th ed. Boca Raton, FL: Chapman & Hall/CRC; 2011. 35. Funk L, Stajduhar KI, Toye C, Aoun S, Grande GE, Todd CJ. Part 2: homebased family caregiving at the end of life: a comprehensive review of published qualitative research (1998Y2008). Palliat Med. 2010;24(6):594Y607. 36. Mok E, Chan F, Chan V, Yeung E. Family experience caring for terminally ill patients with cancer in Hong Kong. Cancer Nurs. 2003;26(4):267Y275. 37. Grov EK, Dahl AA, Moum T, Fossa SD. Anxiety, depression, and quality of life in caregivers of patients with cancer in late palliative phase. Ann Oncol. 2005;16(7):1185Y1191. 38. Singapore Cancer Registry Interim Annual Registry Report. Trends in Cancer Incidence in Singapore 2006-2010. National Registry of Diseases Office Web site. http://www.nccs.com.sg/pat/file/Cancer_Trends_Report_ 2006_2010.pdf. Accessed June 26, 2011. 39. Lunney JR, Lynn J, Foley DJ, Lipson S, Guralnik JM. Patterns of functional decline at the end of life. JAMA. 2003;289(18):2387Y2392. 40. Puchalski C, Ferrell B, Virani R, et al. Improving the quality of spiritual care as a dimension of palliative care: the report of the consensus conference. J Palliat Med. 2009;12(10):885Y904. 41. Yardley SJ, Walshe CE, Parr A. Improving training in spiritual care: a qualitative study exploring patient perceptions of professional educational requirements. Palliat Med. 2009;23(7):601Y607.
Leow et al
Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
