Introduction
Informal caregivers play a critical role in the care of older patients, typically meeting the complex needs associated with functional dependence, cognitive impairment, and numerous chronic comorbidities. As the number of older people treated for cancer continues to rise, the corresponding growing number of caregivers of older cancer patients has broadened the role of caregiver to include the unique challenges associated with the needs of oncological, palliative, and end-of-life care. Understanding the complex relationship of the cancer caregiver–patient dyad is essential in order to optimize overall patient care, while simultaneously remaining attentive to caregiver health and well-being. Caregiving burden in general has been recognized to exert negative effects upon the caregiver themselves, across numerous social, economic, psychological, functional, and medical domains, and alleviating caregiver burden is gradually becoming an accepted goal of health care (Northouse et al., Reference Northouse, Katapodi and Song2010; Kent et al., Reference Kent, Rowland and Northouse2016; Hoerger and Cullen, Reference Hoerger and Cullen2017; Goldzweig et al., Reference Goldzweig, Schapira and Baider2019). Nonetheless, unlike caregivers of other chronic illnesses, evidence suggests that the caregivers of cancer patients remain overlooked by healthcare systems. When conceived as “hidden patients,” it becomes apparent that the numerous needs of cancer caregivers themselves are largely unmet, remaining both unassessed and outside the scope of healthcare intervention (Kristjanson and Aoun, Reference Kristjanson and Aoun2004; Northouse et al., Reference Northouse, Katapodi and Schafenacker2012; Wadhwa et al., Reference Wadhwa, Burman and Swami2013).
Like all aspects of health care, a degree of cultural awareness and sensitivity is an essential prerequisite to adequately understanding the unique role of the caregiver of the older patients diagnosed with cancer. Among the literature concerning people aged 65 years and older in Europe and North America, spouses are the most common informal caregivers (De Zwart et al., Reference De Zwart, Bakx and Van Doorslaer2017; Ornstein et al., Reference Ornstein, Wolff and Bollens-Lund2019; Bertogg and Strauss, Reference Bertogg and Strauss2020). This fact reflects the typical population changes, aging demographics, and cultural norms of Western countries from which the overwhelming majority of literature emerges. While 23% of the world population currently identify as followers of Islam, the limited English language research exists among Muslim patients diagnosed with cancer and their informal caregivers, concerning their experiences, distress, and burden, as well as preferences concerning palliative and end-of-life care (Gustafson and Lazenby, Reference Gustafson and Lazenby2019; Abdullah et al., Reference Abdullah, Guo and Harding2020). Addressing this issue, a recent systematic review and thematic analysis among advanced cancer patients identified only 30 studies of Muslim cancer patients being cared for in Muslim-majority countries. Recurrent illness and care-related themes to emerge from qualitative studies were selflessness (burden to family/caregiver responsibility), ambivalence (hope/hopelessness), strong beliefs in Islam, and conflicts surrounding communication and diagnosis disclosure. The few studies that provide quantitative data describe a high pain burden among patients, alongside high levels of caregiver burden, psychological distress, and depression (Sherif et al., Reference Sherif, Jehani and Saadani2001; Tanriverdi et al., Reference Tanriverdi, Yavuzsen and Turhal2016; Abdullah et al., Reference Abdullah, Guo and Harding2020). Research aimed at understanding and improving the oncological palliative care of Muslims treated in non-Muslim-majority countries is even more sparse (Worth et al., Reference Worth, Irshad and Bhopal2009; de Graaff et al., Reference de Graaff, Mistiaen and Deville2012), and among the studies that do exist, the primary focus of research has been the patient, with analysis of family and caregivers included as secondary research goals.
Research among caregivers of older Muslim patients diagnosed with cancer around the globe is thus generally lacking.
The Middle East is no exception, and although relatively limited data from a number of Middle East states does exist (Almutairi et al., Reference Almutairi, Alodhayani and Alonazi2017; Alsirafy et al., Reference Alsirafy, Abdel-Kareem and Ibrahim2017; Abdullah et al., Reference Abdullah, Guo and Harding2020), to the best of our knowledge, research with caregivers of older Palestinian patients diagnosed with cancer has yet to be performed. A recent review of cancer care in the Palestinian healthcare system, noted that while overall health care is considered to be one of the best among Arab countries in terms of life expectancy, and maternal/infant mortality rates, nonetheless cancer mortality is currently the second leading cause of mortality (14%), and the burden of cancer care is expected to increase. Palliative care still remains an emerging specialty, with no organized formal program at present (Abu-Rmeileh et al., Reference Abu-Rmeileh, Gianicolo and Bruni2016; Halahleh and Gale, Reference Halahleh and Gale2018).
Improving the health and well-being of informal caregiver is an important primary goal, as well as a necessary and vital step to optimal care for the patient themselves. Without a basic understanding concerning the identity of the caregiver in any target population, this goal will remain elusive to medical and healthcare professionals. Accordingly, the overall goal of this study was to present a quantitative descriptive profile of the caregivers of older Muslim Palestinian patients diagnosed with cancer. Such a description can constitute a reference point for subsequent studies of Muslim communities around the world. Specifically, the study aims to describe levels of caregiver depression, and self-perceived social support from spouses, family, and friends, as well as their perceived support from faith and belief, and to identify predictors of depression among caregivers.
Informal caregiving has a very significant in the Islamic culture. This is surprising given the important role of caregiving in the Islamic culture. In the Islamic culture, there is a strong reliance on family support structure. Decision concerning patients may be greatly influenced by nuclear and extended family (Attum et.al., Reference Attum, Hafiz and Malik2021). Caring for parents and for the elderly is a sacred duty in the Islamic law (Hasnain and Rana, Reference Hasnain and Rana2010; Elsaman and Arafa, Reference Elsaman and Arafa2012). We hypothesize that since the “natural” expected role of family members by the surrounding society and maybe also by the healthcare system to take care of older patients their needs and burden may be overlooked. This may be even more prominent in the first stages of the disease when the focus of the healthcare system is totally on the patients and their reactions to treatment. We hypothesized that the pressure to take the role of caregiving may lead to high levels of depression among caregivers even in cases where the objective burden of caregiving was small. Hence, the current study assessed levels of caregiver depression, and self-perceived social support among caregivers to patients who were under treatment or concluded a course of treatment within 6 months of the date of enrollment. We chose to focus on caregivers to patients with relatively high levels of functioning and no cognitive impairment.
Materials and methods
Study population
The study population is part of an ongoing cross-sectional study on distress, coping, and hope among patients aged ≥5 years diagnosed with cancer, and their informal caregivers (Goldzweig et al., Reference Goldzweig, Baider and Andritsch2017, Reference Goldzweig, Baider and Rottenberg2018a, Reference Goldzweig, Schapira and Baider2018b). The study includes Palestinian Muslim cancer patients ≥65 years old living in East Jerusalem, the West Bank, and Gaza, as well as their informal caregivers (as designated by the patients themselves), who are the focus of the current research. We included all patients being treated with curative or palliative intent and who had concluded a course of treatment within 6 months of the date of enrollment. Patients with non-metastatic cancer who were >2 years following diagnosis were considered as survivors and were not included in the study. A total of 103 eligible patients were identified and all gave their consent to enroll, as well as to approach their designated primary caregiver. Three caregivers refused to sign the formal informed consent document, and one patient was subsequently excluded since after clarification he failed to meet the criteria for active disease. The final sample, thus, included 99 patients and their 99 caregivers.
Study site
Patients were recruited from the out-patient oncology clinic, at the 250 bed Al-Makassed Hospital in East Jerusalem (Al-Quds University Hospitals, 2018; East Jerusalem Hospital Network: Supporting patient safety and quality care, 2019; Report on Al Makassed Hospital, 2013). Founded in 1956 by the non-profit Makassed Islamic Charitable Foundation, the hospital serves to improve health care and education, providing tertiary care to the Palestinian Arab population of East Jerusalem and the West Bank and Gaza Strip.
Caregiver inclusion and exclusion criteria
The designation of “caregiver” by the patient served the inclusion criteria, and one primary caregiver was recruited for each patient. Caregivers were excluded if they had: (1) diagnosis of terminal illness, (2) prior or current treatment for cancer, and (3) significant cognitive impairment. Caregivers were also excluded if the patients themselves were: (1) long-term care facility residents, (2) dependent on assistance for walking, toileting, and basic self-care, or (3) suffering from significant cognitive impairment. Cognitive status was determined by the study nurse, a trained senior nurse working in oncology at Al-Makassed Hospital.
Ethical approval and procedure
The study protocol was approved by the Medical Ethics Review Committees of Al-Makassed Hospital. Participants were enrolled as a convenience sample during scheduled outpatient for follow-up or chemotherapy. Patients were asked to designate their primary caregivers, and following signed informed consent from both patient and caregiver, both were interviewed separately according to a structured study questionnaire in Arabic. The Ethics committee required that Arabic measures would be an exact translation of the original English measures; hence, items were translated by a professional translation agency. The translated items were evaluated by the interviewer (the 4th author, an Arab Muslim), and no need for adaptation was found. Nevertheless, the interviewer and answered queries and supplied explanations if needed after reading the items to the participants. Data were collected between December 2019 and June 2020.
Measures
Background data
Socio-demographic data for both caregiver and patients were collected, including gender, age, residential place, the relationship between patient and caregiver, and the number of people in the household. Data regarding the patients’ diagnosis, treatment, cancer stage, Eastern Cooperative Oncology Group (ECOG) performance status (Charlson et al., Reference Charlson, Pompei and Ales1987), and Charlson Comorbidity Index (CCI; Charlson et al., Reference Charlson, Pompei and Ales1987) were obtained from medical records.
Depression
Both caregiver and patient depression were measured using the five-item version of the Geriatric Depression Scale (5-item GDS; Hoyl et al., Reference Hoyl, Alessi and Harker1999). The scale is a shorter version of the 15-item Geriatric Scale and has been proven to be effective as the longer version (Weeks et al., Reference Weeks, McGann and Michaels2003). The scale consists of five binary items (i.e., “Are you basically satisfied with your life?” “Do you feel pretty helpless the way you are now”), each individual item scoring 0–1, and the 5 items thus scoring in a range from 0 to 5. Among the elderly population, the English version of the 5-item GDS has shown excellent sensitivity (94%) and specificity (81%) for the diagnosis of depression and high values of inter-rater reliability (k = 0.88) and test–retest reliability (k = 0.84) (Weeks et al., Reference Weeks, McGann and Michaels2003). The Arabic version was also found to be valid and reliable (Hallit et al., Reference Hallit, Hallit and Boulos2017). The recommended cutoff scores ≥2 as the clinical cutoff for susceptibility to depression (Hoyl et al., Reference Hoyl, Alessi and Harker1999). The 5-item GDS was chosen as an appropriate measure for depression in the current study since the study cancer patients were aged over 65 years old. The longer version of this scale has also been validated among younger adults (Guerin et al., Reference Guerin, Copersino and Schretlen2018). Hence, in order to be able to compare reported levels of depression between patients and caregivers the same scale was used also for caregivers.
Social support
Support among the caregivers was assessed using the Cancer Perceived Agents of Social Support (Goldzweig et al., Reference Goldzweig, Hasson-Ohayon and Meirovitz2010), which is a 12-item questionnaire (i.e., To what extent do you feel you receive helpful information from your spouse?), each item scoring range from 1 to 5. The scale combines two theoretical content facets of social support: agent of support and type of support. In the current research, we used the aggregated score of the agents (spouse, family, friends, and beliefs), each based on the mean of three items (instrumental, cognitive, and emotional support). The Hebrew version of the scale was previously proven to be valid and reliable for patients and their spouses in Israel (Goldzweig et al., Reference Goldzweig, Hasson-Ohayon and Meirovitz2010). Internal reliability of the Arabic version (Cronbach's alpha values) in the current research was as follows: Cronbach's alpha = 0.74, 0.59, 0.40, and 0.84 (spouse, family, friends, beliefs, respectively). Based on these scores, we combined the spouse and family items (Cronbach's alpha = 0.73) and omitted the friends support variable from the analyses.
Statistical analysis
Based on the study goal of describing the sociodemographics of the informal caregiver, we calculated descriptive statistics for the socio-demographic and psychological variables (depression and perceived social support; mean and SD's for continuous variables and frequencies and percentage for categorical variables). The last stage of the analysis employed hierarchical multiple regression for predicting levels of depression among the caregivers. Predictors were entered into three blocks (patient data, caregiver socio-demographic data, and perceived social support).
Results
Demographic data of the caregivers
The mean age of the caregivers was 52.8 years (SD = 11.0, range 20–74), 65% were women, 32% had more the 12 years of education, 80% lived in the same house as the patient, and 96% identified as religious Muslims. Table 1 summarizes the patient's background data. The mean age of the patients was 73.2 years and 66% were males. The common types of cancer types were bladder (13%), lung (12%), brain (12%), and colorectal cancer (10%), with Stage 4 cancer diagnosed among 32% of patients, and 36% of patients receiving chemo or radiotherapy. Table 2 presents the distribution of caregivers according to gender and their relation to the patient. Most caregivers were adult children of the patients (52%) or spouses (32%), while 8% were brothers or sisters of the patients and 7% were relatives or friends. Significant gender differences were observed in the distribution of the caregiver relationship to patient and the patient gender. Male patients were cared for mostly by spouses (47.5%) and sons (32%), while female patients were taken care of mostly by daughters (50%) (χ 2(2) = 26.31, p < 0.0001). Table 3 presents the distribution of the number of people in the patient's household according to the caregiver place of residence. Most of the caregivers (80%) lived with the patient, the remainder reported being within walking distance from the patient. Indeed, most of the patients reported on a large household: 52.5% of the patients reported on four or more persons in their household, while 32% reported on six or more persons in the household. Only five patients were living alone within walking distance from relatives.
Patients socio-demographic and medical data
ECOG, The Eastern Cooperative Oncology Group performance status (0 = Fully active; 1 = Symptomatic but completely ambulatory; 2 = Symptomatic, <50% in bed during the day; 3 = Symptomatic, capable of only limited self-care); CCI, Charlson Comorbidity Index; Stage data were missing for one patient.
Distribution of caregivers by relation to the patient and the patient's gender
a Including one daughter in low.
Distribution of the number of persons in the patient's household by residential place of the caregivers
Depression and social support
Table 4 presents means and SD's of the depression and social support variables, and levels of depression. The mean levels of depression were above the clinical cutoff for depression among 85% of patients and 76% of caregivers, being significantly higher for patients (t(98) = 2.12, p < 0.036). There was no significant correlation between the caregiver depression, measures of the caregivers and the patients (Pearson's r = 0.031, p < 0.76 n.s).
Descriptive statistics for depression and perceived social support scales
Predicting caregivers’ depression levels
Table 5 presents the hierarchical regression predicting levels of caregiver depression. The total model was found to be significant (F(15,78) = 2.89, p < 0.001, R 2 = 0.33, adjusted R 2 = 0.23). The first block (patient variables) was not found to have any significant contribution to the prediction of caregiver depression. The second block (caregiver variables) found that female caregiver gender women and lower education of caregiver were both found to significantly predict higher levels of caregiver depression. The third block (caregiver perceived social support) was found to be significant. Higher caregiver perceived social support from spouse and family was related to lower levels of depression, while higher levels of faith support were related to higher levels of depression.
Hierarchical regression analysis predicting caregiver's depression with patient's and caregiver's data
ECOG, The Eastern Cooperative Oncology Group performance status (0 = Fully active; 1 = Symptomatic but completely ambulatory; 2 = Symptomatic, <50% in bed during the day; 3 = Symptomatic, capable of only limited self-care); CCI, Charlson Comorbidity Index.
* p < 0.05.
** p < 0.01.
Interestingly, the number of people in the patient's household showed a significant positive association with caregiver depression (higher levels of depression were related to more persons in the patient's household). This relation was nullified when the number of persons in the patient's household was entered as a predictor to the hierarchical regression model.
Discussion
This study provides an insight to the depression and social support of caregivers of older Palestinian Muslim patients diagnosed with cancer from East Jerusalem and the West Bank. While the mean patient age was 73.2, caregivers were on average 20 years younger (mean age 52) and tended to be spouses (32%), daughters (27%), or sons (25%), with female spouses typically caring for their husbands, sons caring for fathers, and daughters for their mothers. The majority (80%) of caregivers lived together in the same household as the patient, alongside other family members, and while 50% of caregivers lived with ≥4 household members, 32% of caregivers lived with ≥6 household members. Depression was extremely common among both the caregivers (76%) and even higher among patients (85%). While caregiver depression among our sample was unrelated to any patient characteristic, it was shown to be significantly associated with female gender, lower educational level, and increasing household size. Furthermore, after adjustment for caregiver and patient variables, significant predictors of caregiver depression were female caregiver gender, lower perceived support from family and spouse, as well as the observation that higher perceived caregiver support from faith was also a significant predictor of increased caregiver depression. Thus, the typical portrait of the caregiver described among our convenience sample of older Palestinian Muslim patients presents a poorly educated female, living with many household members, with high rates of caregiver depression being associated with lower family social support, alongside a higher perceived sense of support from faith.
Our findings contribute novel data concerning caregivers of older patients diagnosed with cancer and specifically sheds light upon the factors associated with the frequent depression observed among caregivers. Among the existing literature concerning the care of older Muslim diagnosed with cancer, recurrent themes to emerge from a range of studies of patients, families and caregivers spanning numerous and diverse settings, have been the strong family responsibility and commitment, a complex dynamic of ambivalence concerning hope and hopelessness, and a central strong belief in Islam.
Family responsibility among caregivers has also accompanied reports of the high social support received from extended family members and friends (Arian et al., Reference Arian, Younesi and Khanjani2017; Gustafson and Lazenby, Reference Gustafson and Lazenby2019; Abdullah et al., Reference Abdullah, Guo and Harding2020). In contrast, other studies have emphasized a sense of social isolation which frequently was attributed to the perceived stigma and taboo associated with cancer (Banning and Tanzeem, Reference Banning and Tanzeem2013, Reference Banning and Tanzeen2014; Gustafson and Lazenby, Reference Gustafson and Lazenby2019), and the resultant decrease in social interaction leading to heightened sense of isolation. Similar findings of loneliness and social isolation have been identified among cancer patients themselves (Çıracı et al., Reference Çıracı, Nural and Saltürk2016; Soylu et al., Reference Soylu, Ozaslan and Karaca2016). The mutual depression shared by patient and caregiver would appear not to be a shared collaborative experience. More likely, the common finding that diagnosis disclosure is frequently avoided concerning oncological illness and prognosis, in all likelihood further exacerbates the complex relationship of caregiver–patients (Ozdogan et al., Reference Ozdogan, Samur and Bozcuk2004; Mobeireek et al., Reference Mobeireek, Al-Kassimi and Al-Zahrani2008; Khalil, Reference Khalil2013; Alsirafy et al., Reference Alsirafy, Abdel-Kareem and Ibrahim2017; Alzahrani et al., Reference Alzahrani, Alqahtani and Alhazmi2018; Abdullah et al., Reference Abdullah, Guo and Harding2020), and deepens the mutual (yet unshared) sense of the patient's and caregiver's individual isolation. Improved sense of social family support was protective against caregiver depression in our study, a finding replicated in caregiver literature. Also, the rising number of household members was associated with increased depression of the caregiver is to be noted. This somewhat paradoxical finding serves to emphasize the important difference between qualitative perceived social support from family members, in contrast to the quantitative measure of family members present at the point of care. Indeed, these two factors were seen in our sample to actually influence in opposite directions, suggesting that an inverse relationship between them as far as meaningful caregiver support is concerned.
The finding in our study that increased caregiver perceived support derived from faith was associated with increased caregiver depression must clearly be approached with caution and beckons deeper examination (Ypinazar and Margolis, Reference Ypinazar and Margolis2006; Padela et al., Reference Padela, Killawi and Forman2012). Several studies have noted that cancer is often considered as a taboo in Palestinian and other Middle Eastern settings (Mobeireek et al., Reference Mobeireek, Al-Kassimi and Al-Zahrani2008; Khalil, Reference Khalil2013; Alzahrani et al., Reference Alzahrani, Alqahtani and Alhazmi2018; Atout and Carter, Reference Atout and Carter2020), as well as the wide held belief that disease and illness may be considered as a divine test of their patience, acceptance, and potentially serves as a redemptive experience (Arian et al., Reference Arian, Younesi and Khanjani2017; Abdullah et al., Reference Abdullah, Guo and Harding2020). It might be hypothesized that the complex caregiver–cancer patient dyads of our study are the arena, which serves to both highlight and catalyze the interaction of emotive and powerful vectors of faith and belief, cancer and taboo, social quantitative isolation and barriers in communication, offset by meaningful family support. It is within this complexity that both caregiver and patient's well-being and care deserve to be approached.
Limitations
It is relevant to point out certain limitations of our study. While our findings describe a small microcosm from a convenience sample of East Jerusalem, the West Bank, and Gaza population, and the participants indeed are the representative of patients and their caregivers at the site of care, findings can not be generalized to any other population. Focusing upon the patient–caregiver dyad by definition limited the caregiver to a single primary caregiver, usually a close family member living alongside other family members with the patient. Interviewing a wider number of family members and friends involved in caregiving would have possibly provided a wider and more trustworthy picture of these populations.
Implications
Several implications arise from our study. Recognizing and identifying who is the primary caregiver within their appropriate context is clearly of prime importance, as a first step toward understanding their needs, levels of burden, distress, and depression. Specifically, our findings suggest that improving social support of the caregiver is a priority. In order to achieve this goal, there is a need to accurately determine the position and role of the caregiver within the social and family structure surrounding the patient. Addressing the barrier to communication and meaningful support of the cancer caregiver is a challenge to medical and healthcare providers serving the study population. We strongly suggest that it is a vital and pertinent step, required to achieve the goal of optimal care of the older patients diagnosed with cancer patients.
Funding
This research was supported by grant #20201212 from the Israeli Cancer Society (ICS).
Conflict of interest
The authors declare that they have no conflicts of interest or competing interests.
