exploring the other side of cancer care: the informal caregiver

9
Exploring the other side of cancer care: The informal caregiver Evridiki Papastavrou a, * ,1 , Andreas Charalambous a, * , Haritini Tsangari b a School of Health Sciences, Department of Nursing, Cyprus University of Technology, 215, Dromos Lemesou, 2252 Latsia, Nicosia, Nicosia 2252, Cyprus b University of Nicosia, Cyprus Keywords: Caregiving Burden Cancer Coping Informal caregiver Depression abstract Objectives: To identify the caregiver outcomes among relatives caring for patients with cancer and to examine the patient and family caregiver variables that predicted for caregiver burden and depression. Methods: One hundred and thirty caregivers completed the Greek versions of the Burden Interview (BI), the Center of Epidemiology – Depression Scale (CES-D) and the Ways of Coping Questionnaire. Principal component analysis was performed to examine the underlying dimensions of caregiver outcome measures. One-way ANOVA and independent sample t-tests were used to test for differences in burden and depression in relation to demographic variables of interest. One-way ANOVA was used for examining differences in coping strategies. Findings: One-way ANOVA showed that there are significant differences among the various educational levels (p < 0.001) and the income (p < 0.005) of the caregiver in terms of overall burden. 66.4% of caregivers had a depression above the usual cutoff point for depression. An independent samples t-test for possible gender differences, showed that there is a significant difference between males and females (p ¼ 0.29). In regression analysis it was found that only caregiver’s income and patient’s age are statis- tically significant in predicting burden and depression. When considering high-burdened caregivers results showed that there are significant differences in the use of coping strategies (p < 0.001). Conclusions: Caregivers reported high levels of burden and depression. These outcomes of caregiving are related to several variables, but the caregiver’s income and patient’s age are predictive. Intervention strategies are needed to the vulnerable caregivers to help reduce burden and depression associated with caregiving. Ó 2009 Elsevier Ltd. All rights reserved. Introduction Cancer remains a major cause of morbidity and mortality within Cyprus affecting one in four of the population (Cyprus Statistical Services, 2003). Based on the ‘‘2003 Yearly Report’’ launched by the Cyprus Ministry of Health, cancer is considered as one of the ‘‘new epidemics’’ of our time along with heart diseases. Cancer claims 10% of the total number of deaths, and is considered one of the biggest killers (Charalambous et al., 2008). Alongside the nature of cancer has changed dramatically in recent years, including shorter inpatients’ stays, an increasing older cancer population and significant improvements in treatments’ outcomes and effective- ness. The shift from inpatient to outpatient treatment has emphasized the importance of informal caregivers [Throughout the article, ‘caregiver’ is used to denote a family caregiver, rather than a professional caregiver], increasing their responsibilities in rela- tion to the care (Glajchen, 2004; Hudson et al., 2004). In Cyprus, the role and magnitude of family caregivers in the care of people with cancer is similar to the ones reported interna- tionally (Haley, 2003). The reason for this lays perhaps in the strong relationships between the family members as well as the tradi- tional norms which drive in many cases the people’s actions. Several organizations which are based on private initiatives offer care to patients with cancer at their homes. Even though some evidence and research studies have been performed in Cyprus in relation to cancer care, these remain scarce stressing for more studies in this area and particularly the provision of cancer care, a need which echoes the aim of the current study. Caregiving has emerged as a dominant focus of research in recent years (Van Pelt et al., 2007; Cain et al., 2004). The literature review focused on those studies that investigated primarily the domains of caregiver burden, the assessment of psychiatric * Corresponding authors. Tel.: þ357 99545021. E-mail addresses: [email protected] (E. Papastavrou), andreas.charalambous@ cut.ac.cy (A. Charalambous). 1 Tel.: þ357 22001605. Contents lists available at ScienceDirect European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon 1462-3889/$ – see front matter Ó 2009 Elsevier Ltd. All rights reserved. doi:10.1016/j.ejon.2009.02.003 European Journal of Oncology Nursing 13 (2009) 128–136

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European Journal of Oncology Nursing 13 (2009) 128–136

Contents lists avai

European Journal of Oncology Nursing

journal homepage: www.elsevier .com/locate/e jon

Exploring the other side of cancer care: The informal caregiver

Evridiki Papastavrou a,*,1, Andreas Charalambous a,*, Haritini Tsangari b

a School of Health Sciences, Department of Nursing, Cyprus University of Technology, 215, Dromos Lemesou, 2252 Latsia, Nicosia, Nicosia 2252, Cyprusb University of Nicosia, Cyprus

Keywords:CaregivingBurdenCancerCopingInformal caregiverDepression

* Corresponding authors. Tel.: þ357 99545021.E-mail addresses: [email protected] (E. Papasta

cut.ac.cy (A. Charalambous).1 Tel.: þ357 22001605.

1462-3889/$ – see front matter � 2009 Elsevier Ltd.doi:10.1016/j.ejon.2009.02.003

a b s t r a c t

Objectives: To identify the caregiver outcomes among relatives caring for patients with cancer and toexamine the patient and family caregiver variables that predicted for caregiver burden and depression.

Methods: One hundred and thirty caregivers completed the Greek versions of the Burden Interview (BI),the Center of Epidemiology – Depression Scale (CES-D) and the Ways of Coping Questionnaire. Principalcomponent analysis was performed to examine the underlying dimensions of caregiver outcomemeasures. One-way ANOVA and independent sample t-tests were used to test for differences in burdenand depression in relation to demographic variables of interest. One-way ANOVA was used for examiningdifferences in coping strategies.

Findings: One-way ANOVA showed that there are significant differences among the various educationallevels (p< 0.001) and the income (p< 0.005) of the caregiver in terms of overall burden. 66.4% ofcaregivers had a depression above the usual cutoff point for depression. An independent samples t-testfor possible gender differences, showed that there is a significant difference between males and females(p¼ 0.29). In regression analysis it was found that only caregiver’s income and patient’s age are statis-tically significant in predicting burden and depression. When considering high-burdened caregiversresults showed that there are significant differences in the use of coping strategies (p< 0.001).

Conclusions: Caregivers reported high levels of burden and depression. These outcomes of caregiving arerelated to several variables, but the caregiver’s income and patient’s age are predictive. Interventionstrategies are needed to the vulnerable caregivers to help reduce burden and depression associated withcaregiving.

� 2009 Elsevier Ltd. All rights reserved.

Introduction

Cancer remains a major cause of morbidity and mortality withinCyprus affecting one in four of the population (Cyprus StatisticalServices, 2003). Based on the ‘‘2003 Yearly Report’’ launched by theCyprus Ministry of Health, cancer is considered as one of the ‘‘newepidemics’’ of our time along with heart diseases. Cancer claims10% of the total number of deaths, and is considered one of thebiggest killers (Charalambous et al., 2008). Alongside the nature ofcancer has changed dramatically in recent years, including shorterinpatients’ stays, an increasing older cancer population andsignificant improvements in treatments’ outcomes and effective-ness. The shift from inpatient to outpatient treatment has

vrou), andreas.charalambous@

All rights reserved.

emphasized the importance of informal caregivers [Throughout thearticle, ‘caregiver’ is used to denote a family caregiver, rather thana professional caregiver], increasing their responsibilities in rela-tion to the care (Glajchen, 2004; Hudson et al., 2004).

In Cyprus, the role and magnitude of family caregivers in thecare of people with cancer is similar to the ones reported interna-tionally (Haley, 2003). The reason for this lays perhaps in the strongrelationships between the family members as well as the tradi-tional norms which drive in many cases the people’s actions.Several organizations which are based on private initiatives offercare to patients with cancer at their homes. Even though someevidence and research studies have been performed in Cyprus inrelation to cancer care, these remain scarce stressing for morestudies in this area and particularly the provision of cancer care,a need which echoes the aim of the current study.

Caregiving has emerged as a dominant focus of research inrecent years (Van Pelt et al., 2007; Cain et al., 2004). The literaturereview focused on those studies that investigated primarily thedomains of caregiver burden, the assessment of psychiatric

E. Papastavrou et al. / European Journal of Oncology Nursing 13 (2009) 128–136 129

morbidity in the form of depression as it is possibly related withburden and also investigating the mechanisms that people employin order to cope with the stress of caregiving.

Caregiver burden is considered ‘‘a multidimensional biopsy-chosocial reaction resulting from an imbalance of care demandsrelative to caregivers’ personal time, social roles, physical andemotional states, financial resources, and formal care resourcesgiven the other multiple roles they fulfill’’ (Given et al., 2001, p. 5).Similarly, caregiver burden refers to people’s emotional response tothe changes and demands of giving support to another (Higginsonand Gao, 2008, p. 43). Therefore, the concept of caregiver burdenhighlights the ‘‘negative’’ aspects of caregiving, rather than thepositive elements and has being found as the most importantpredictor of depression (Grunfeld et al., 2004). Caregiver depres-sion is a mood disturbance resulting from the stress of providingcare (Fortinsky et al., 2002), which may be manifested as feelings ofloneliness, isolation, fearfulness, and being easily bothered.

In their majority informal caregivers of patients with cancer arefamily members, who may not be prepared for, or have theresources and energy to meet the needs of the patient (Haley, 2003,p. 1). Caregiving can be highly rewarding, but it can also beburdensome and pose a risk for stress, depression, anxiety, andsleep disruption (Ferrell et al., 1999; Haley et al., 2001; Wilkinson2005; Kroenke et al., 2004; Cho et al., 2006). Stress associated withcaregiving can persist indefinitely and may have pronouncedeffects on health (Schulz and Beach, 1999).

In the current literature, researchers have concluded that manyreasons can be associated with caregiver burden (Lyons et al., 2002;Weitzner et al., 1999; Chan and Chang, 1999). Given et al. (2004, p.1107) assert that the burden experienced by many caregivers maybe the result of the ‘‘reprioritization or relinquishment of respon-sibilities related to childcare and employment, the prioritization ofhome care demands, and the negotiation and renegotiation offactors related to familial and generational relationships’’. Predic-tors of burden reported consistently in the literature include thelevel of support that caregivers receive, the caregiver gender, thepatient symptom status as well as the patient functional status(Grunfeld et al., 2004; Northouse et al., 2000; Stommel et al., 2002;Nijboer et al., 2000, 2001). As defined by Zarit et al. (1986), theburden of caregiving is also interpreted by caregivers in accordancewith both the extent that it is injurious to their health and withtheir socioeconomic status. The caregivers’ inner resources alsoimpact upon their approach to the burden so that tasks that mustbe performed seem too difficult for some caregivers but areregarded as easy by others.

Caregiving appears to be a stressful process for the informalcaregiver, therefore becomes important to understand how care-givers adapt to, and cope mentally with the disease and theresponsibilities that derive from it. There is a plethora of conceptssuch as avoidance, negation, denial and disavowal which have beenused to interpret the ways informal caregivers employ to cope withtheir role as caregiver. Coping according to Lazarus and Folkman(1984) involves ‘‘constantly changing cognitive and behavioralefforts to manage specific external and/or internal demands thatare appraised as taxing or exceeding the recourses of the person’’(p. 141).

Methods

Aims

The present study is the first attempt to explore the subjectiveperceptions of families experiencing burden when caring fora loved one suffering from cancer in Cyprus. Much of the caregivingresearch has been conducted in European or North American

samples. This research used a Greek-Cypriot sample whose culturalnorms and expectations for family caregiving may be different fromthe usual samples which potentially can expand knowledge aboutcaregiving. The main research questions were:

What is the level and the domains of burden when a familymember undertakes a caregiver role?Which are the consequences of caregiving to the emotionalwellbeing of the primary caregiver?What kind of strategies and support do caregivers use to copewith the stressors of caregiving?Is there a relation between the caregivers’ characteristics andthe variables under study?

Research design

This is a correlational research design, with the use of a conve-nience sample that is typical in family caregiving research. Ethicalapproval was obtained from the hospital’s committee, the care-givers signed informed consent and their anonymity and confi-dentiality of the information was assured.

Sample characteristics

The eligibility criteria for the caregiver included the absence ofa disability, over 20 years of age, speaking Greek and living with thepatient in the same household, so as to guarantee involvement andcaregiving responsibilities. Consenting patients identified theirprimary family caregiver who was asked to participate. The datawere collected over a period of 6 months from everybody who filledthe criteria. The patients were treated at oncology centers asoutpatients and had been diagnosed with cancer during theprevious five years. In Cyprus the commonest form of cancer inmen is prostate cancer whilst the second most common cause ofdeath is lung cancer followed by colorectal cancer. In the EU, lung,bronchus and trachea are the most common cancer sites followedby prostate cancer (Boyle and Ferlay, 2005). The commonest causeof death for women in Cyprus is breast cancer followed by colo-rectal cancer and brain cancer which are similar to the cancer sitesobserved in the EU countries (Cyprus Statistical Services, 2003).

The final sample consisted of 130 primary caregivers. Data werecollected by two registered nurses, meeting caregivers at their visitto the center and the questionnaire included demographic ques-tions as well as the subjective opinion of the caregivers about theirill relative’s general health condition with a rating from 1 (verygood) to 4 (serious health problems).

Measures

Three measuring instruments were used to answer the researchquestions. Caregivers were also asked to report their source ofsupport, for example voluntary cancer organizations, home careorganized by the state or the private sector, the family, friends orhome help. The family’s source of information regarding patientcare was examined too, to see if this was provided by doctors,nurses or others, or if caregivers did not have any information at all.

Caregiver burden, emotional wellbeing and coping with care-giving, were assessed with three instruments translated fromEnglish to Greek and validated in previous studies (Papastavrouet al., 2007). However, validation studies were performed andinternal consistency was derived for each scale in the present studyas well.

E. Papastavrou et al. / European Journal of Oncology Nursing 13 (2009) 128–136130

The caregiver Burden Scale (Zarit et al., 1980)Caregiver burden was assessed using the Burden Interview (BI)

(Zarit et al., 1980). The questions, selected on the basis of clinicalexperience with caregivers, cover the caregiver’s health, psycho-logical wellbeing, finances, social life and relationship with theimpaired person. Caregivers were asked to respond to a series of 22questions about the impact of the patient’s disabilities on their life.The Zarit Burden Interview was designed to assess caregiverburden of elderly and demented patients, but it has also been usedin cancer caregiving research (Gilbar, 1999; Goldstein et al., 2004;Grunfeld et al., 2004; Higginson and Gao, 2008; Lowenstein andGilbar, 2000). The translated Greek version of the scale was used ina previous study for caregiver burden of patients with dementia,where the reliability, as measured with Cronbach’s a, was veryhigh, at 0.93, and the construct validity, measured with exploratoryfactor analysis, gave four factors that explain 63.92% of the variation(Papastavrou et al., 2007).

Center for Epidemiological Studies – Depression Scale (CES-D)The CES-D is a 20-item scale used to assess the overall level of

depression experienced in the past week (Raddloff, 1977).Psychometric properties have been shown to be strong in manystudies, including the translated Greek version (Madianos et al.,1992). The CES-D has been used extensively in cancer caregivingresearch (Given et al., 2004; Hagedoorn et al., 2000; Kim et al.,2007; Stetz and Brown, 2004).

The Greek version of the ways of coping questionnaire (WCQ)This instrument is based on the original questionnaire (Lazarus

and Folkman, 1984) and the Greek translation consists of 38 items.A previous study showed internal reliability of a¼ 0.73 and factoranalysis produced five factors that explained 32.3% of the variation(Karademas, 1998). These were: positive approach, seeking socialsupport, wishful thinking, avoidance strategies and assertiveness.

Table 1Socio-demographic characteristics of caregivers and patients.

Characteristic N %

Caregiver gender (N 130)Male 59 45.4Female 71 54.6

Analysis of data

For the analysis the SPSS-15 version was used. Reliability andvalidity analyses were applied to confirm the scientific rigor of theresearch instruments. Univariate analyses (correlation, t-tests, andone-way ANOVA) and multivariate analyses (multiple regressions)were used to examine the relationship between the variables andthe caregiver characteristics.

Relation of caregiver to patient (N 130)Spouse 48 36.9Son 19 14.6Daughter 29 22.3Sibling 20 15.4Other 14 10.8

Caregiver level of education (N 130)Elementary 18 13.8Secondary 29 22.3Higher 83 63.9

Caregiver income per year (N 130) (Euros)Up to 17.000 46 35.417.001–35.000 46 35.435.001–50.000 30 23.1Over 50.001 8 6.2

Patient cancer site (N 130)Breast 33 25.4Colon 22 16.9Gynecological 17 13.1Lung 14 10.8Prostate 12 9.3Musculoskeletal 11 8.5Others (endocrine, blood, nervous) 10 7.9Metastasis 11 8.5

Results

Socio-demographic characteristics of caregivers and patients

The sample consisted of 130 caregivers, of whom 59 caregivers(45.4%) were male and 71 females (54.6%). Their age ranged from 25to 78 years, with a mean of 50.65 years and standard deviation 13.4years. Regarding their relation with the patient, most of them werespouses (36.9%) and daughters (22.3%). The majority were welleducated (64% had an education above the average generaleducation, i.e. more than 12 years) although 65% earned less than35 thousand Euros per year, 32% of the respondents were unem-ployed, but only 4 caregivers (3.1%) had stopped working becausethey had to provide care to the patient.

The mean age of patients was 60.14 years, ranging from 19 to 83years old, with a standard deviation 15 years. Fifty-two patientswere males (40%) and 78 females (60%). Breast cancer was the mostprevalent diagnosis (33 patients or 25.4%) followed by cancer of thecolon (16.9%). Eleven patients or 8.5% had metastasis. Forty per centof the patients were being treated with chemotherapy after

a surgical excision, 30% with both radiotherapy and chemotherapyand 15.4% with only chemotherapy.

Caregivers were also asked to rate their relatives’ generalcondition of health as good, not very good, fairly good and withserious problems in care. Fifty-three caregivers (40.8%) felt that thepatient’s health state was very good and 45 (34.6%) felt that it isgood. Only 28 caregivers (21.5%) felt that their patient’s health wasnot very good and just 4 (3.2%) reported that the patient hadserious problems.

The support to the family was given from several sources, themost important being family, friends, the cancer associations andhome health aid. More specifically 82 families (63.08%) had socialsupport (Welfare office and/or cancer associations and/or govern-ment support services), 95 families (73.08%) had some type offamily support (family and/or friends) and 42 families (32.31%) hadpaid support (housemaid and/or private support services). Only 3families had no support at all. Note that the sum of the frequenciesdoes not equal 130, the total sample size (and thus the totalpercentage is higher than 100%), because some of the families useda combination of social and/or family and/or paid support. Thesocio-demographic characteristics of caregivers and patientsappear in Table 1.

Burden and the dimensions of burden

The burden questionnaire consists of 22 questions. A burdenindex was created by summing up the scores on all the questions.High scores mean high burden (minimum possible score is 0 andmaximum possible score is 88). The mean burden was 37.1; theminimum score was 7, the maximum 78 and the standard deviation15.9. Also, 32% of caregivers have burden index above 44 (the cutoffscore), 21% of caregivers have a burden score below 22 (i.e.answered mostly 0¼ never or 1¼ rarely), and 4 caregivers (3%)have a score of 70 or above.

Following we performed factor analysis to see if burden hasdifferent dimensions based on the items of the questionnaire. The

Table 2Psychometric properties of the BI.

Factor(dimension)

Numberofquestions

Eigenvalue Variationexplained %

ReliabilityCronbach’s a

Averagefactorburden

SD offactorburden

1-Personalstrain

8 5.49 24.9 0.91 1.30 0.83

2-Role strain 9 5.10 23.2 0.91 1.84 0.883-Health and

financialburden

2 2.13 9.7 0.78 1.49 1.10

4-Managementof care

3 1.81 8.2 0.54 2.38 0.65

Total scale 22 66% 0.94

Table 3Stepwise linear regression for caregiver burden and depression.

Burden predictors B-Coefficient t p-Value VIF R2

Intercept 38.70 5.22 <0.001Caregiver’s education �3.31 �3.98 <0.001 2.89 0.19Patient’s age 0.23 2.64 0.009 1.19

Depression predictors B-Coefficient t p-Value VIF R2

Intercept 23.75 4.98 <0.001Caregiver’s education �2.16 �4.01 <0.001 2.93 0.17Patient’s age 0.11 2.00 0.048 1.17

E. Papastavrou et al. / European Journal of Oncology Nursing 13 (2009) 128–136 131

principal components analysis extraction method, with VARIMAXrotation, was used. The analysis gave 4 factors for burden whichexplained a total of 66% of the variance and covered all 22 scaleitems. The first factor had eigenvalue 5.49 and explained 24.9% ofthe variance, the second had eigenvalue 5.10 and explained 23.2%of the variance, the third had eigenvalue 2.13 and explained 9.71%of the variance and the fourth had eigenvalue 1.81 and explained8.2% of the variance. For a sample size of 130, we identify a factorloading to be significant if it is above 0.48. The first two factors wereequivalent in terms of variance explained, eigenvalues and ques-tions that load on each.

The factor scores of burden were created as summated scoresand then averaged according to the number of questions on each,for fair comparisons.

Factor 1 (personal strain) consists of eight questions, Factor 2(role strain) consists of nine questions, Factor 3 (health and finan-cial burden) consists of two questions and Factor 4 (management ofcare) consists of three questions.

The reliability of the questions of every factor, as well as thereliability of the scale, was measured with Cronbach’s a. The closerCronbach’s a is to 1.0, the greater the internal consistency of theitems in the scale. Results showed that Cronbach’s a for the overallscale was 0.94. Based on the rules of thumb found in George andMallery (2003), an alpha above 0.90 shows that the general reli-ability of the scale was ‘‘excellent’’. It should be noted that althougha too high item correlation (alpha) could be an indication that someitems are redundant and could be removed from the scale, since theburden index is widely used in literature, changing it or removingany items is beyond the scope of this paper. Finally, while a highvalue for alpha indicates good internal consistency, it does notmean that the scale is unidimensional. This was proved by ourfactor analysis results, which indicated the dimensionality of thescale. The reliability of the created factors was also high.

Both the reliability and construct validity of the burden ques-tionnaire were better compared to the study on dementia patients,where the Greek translation was used (Papastavrou et al., 2007). Toexamine in which factor the burden is higher we performed one-way ANOVA and also found the means and standard deviations ofthe created factors. Results from one-way ANOVA showed thatthere is a statistical difference in the burden among the fourdimensions of burden (F¼ 37.68, p< 0.001). More specifically, if welook at the average burden for each factor, the highest burden is forfactor 4, and then follows factor 2, then factor 3 and the leastburden is for factor 1 (Table 2).

Finally, all the Pearson correlation coefficients between theoverall burden index and the four factors of burden are highlysignificant (p< 0.01, r¼ 0.93, 0.94, 0.74 and 0.35 respectively). Thecorrelation coefficients between the factors of burden are alsosignificant, except between factors 3 and 4 (r¼ 0.14, p> 0.05). Morespecifically, the correlations between factor 1 and factors 2, 3, 4 are0.79, 0.65 and 0.24 respectively (p< 0.01 for all), and the correla-tions between factor 2 and factors 3, 4 are 0.62 (p< 0.01) and 0.22(p< 0.05), respectively. The fact that all the correlations are positiveindicates that when burden is high on one factor it is also high onthe other and is also high overall.

Burden and depression

The 20 items of the CES-D were summated so that a depressionindex was created, with a possible minimum of 0 and maximum of60. Results showed a mean of 20.35, minimum 0, maximum 48 andstandard deviation 10.06. In our sample, 66.4% of caregivers hada depression score 16 or above (the usual cutoff point for depres-sion). The reliability of the CES-D in the present study, measuredwith Cronbach’s a, was 0.89, which (similar to the burden

questionnaire) is higher compared to the Greek version used incaregiver burden of patients with dementia (Papastavrou et al.,2007). All the Pearson correlation coefficients between burden anddepression were highly significant (p< 0.01) and positive (i.e. whenburden is high then depression is also high), except betweendepression and burden factor 4, where there was no relation(r¼ 0.12, p> 0.05). The correlation coefficient between overallburden and depression was 0.70 and the correlation coefficients offactors 1, 2, and 3 with depression were 0.65, 0.65 and 0.64respectively.

Regression analysis for burden and depression

In order to determine which factors or characteristics predictedgreater burden or depression, two stepwise regression analyseswere conducted. The nine predictor variables that were entered inthe regression belonged to four groups (1) socio-demographiccaregiver variables (gender, age, education, and income), (2) care-giver’s utilization of social support resources or training by nursesand/or doctors, (3) socio-demographic patient’s variables (gender,age) and (4) patient’s health status as perceived by the caregiver.Table 3 shows that when all nine variables are entered in regres-sion, caregiver’s education and patient’s age are statisticallysignificant in predicting burden. The negative coefficient of care-giver’s education shows that the higher the education level, thelower the burden and the positive coefficient of patient’s age showsthat the older the patient the more the caregiver’s burden. More-over, results showed that R2¼ 0.19, which means that 19% of thevariability in burden is explained by the variation in these twopredictors.

Similar results were obtained for depression, where the sametwo predictors seemed to be the most important in predictingcaregiver’s depression. The two predictors affected depression inthe same way, in other words the higher the education level thelower the depression and the older the patient the higher thecaregiver’s depression. In this regression, 17% of the variation indepression is explained by the variation in the two predictors.Finally, in the regression results that are reported, there did not

E. Papastavrou et al. / European Journal of Oncology Nursing 13 (2009) 128–136132

exist any multicollinearity problems, in either regression for thesignificant variables, since all the VIF factors were much smallerthan 10. The regression results appear in detail in Table 3.

It is important to note that when caregiver’s education wasexcluded from the predictors’ list, results showed that the twovariables that were significant were now caregiver’s income andpatient’s age. More specifically, in the regression for burden, the B-coefficient of income was –3.99, with t¼�2.97 and a p-value of0.004. In the regression for depression the B-coefficient of incomewas –2.71, with t¼�3.14 and a p-value of 0.002. These resultsindicate that, apart from caregiver’s education and patient’s age,another strong variable in predicting burden and depression iscaregiver’s income. The negative coefficient implies that the higherthe caregiver’s income, the lower the burden. Collinearity issuesbetween caregiver’s income and education were the reason forincome not appearing to be significant when the two variables areexamined together in the regression.

The characteristics of caregivers and patients as related to burdenand depression: additional results from univariate analyses

Univariate analyses were performed, in order to see if we canobtain any additional information on the characteristics of care-givers and patients, in relation to caregivers’ burden anddepression.

a) Caregivers’ educational level, income and employment statusFirst, the two characteristics that were found to be statistically

significant for predicting burden and depression in the multivariatesetting, namely caregivers’ education and income, were examinedin more detail, especially to consider the dimensions of burden, aswell.

One-way ANOVA showed that, except from significant differ-ences in overall burden among the different educational levels ofcaregivers, there were also significant differences in the dimensionsof burden; for factor 1, F¼ 9.14, p< 0.001; for factor 2, F¼ 7.71,p¼ 0.001; for factor 3, F¼ 29.36, p< 0.001; the only dimensionwhere there are no significant differences in burden for thedifferent education levels is the fourth dimension, factor 4, F¼ 1.61,p¼ 0.204, although this factor had the highest burden, as shown inTable 2. Post-hoc tests showed that in general higher educationmeans lower burden; caregivers with a higher education hadsignificantly lower burden (overall or in the dimensions) comparedto caregivers with elementary or secondary education.

As shown in multivariate regression, the educational level of thecaregiver was significant in predicting depression, as well. This wasverified by a one-way ANOVA (F¼ 10.52, p< 0.001) and post-hoctests showed that in general higher education means lowerdepression. More specifically, we have significantly lower depres-sion for caregivers who received higher education (mean 17.51)compared to caregivers who had elementary (mean 24.77) orsecondary (mean 25.79) education.

Similarly, following the multivariate results, one-way ANOVAshowed that apart from overall burden (F¼ 3.92, p¼ 0.005), thereare significant differences among the different income levels interms of the first three dimensions of burden (e.g. for factor 3,F¼ 9.63, p< 0.001). Post-hoc tests showed that in general higherincome means lower burden. As shown in multivariate regression,there were significant differences in depression according to care-giver income (one-way ANOVA gave F ¼ 4.15, p¼ 0.008), wherelower income caregivers had more depression.

Burden and depression were also examined in terms ofemployment, a variable that was not included in the list ofpredictors in multivariate regression. One-way ANOVA showed thatthere are significant differences in factor 3, the financial burden,(F¼ 6.960, p< 0.001), where caregivers who work have less burden

compared to those that do not work, or have retired, or havestopped working because of the patient (means 1.19, 2.00, 2.29,2.62 respectively). There were only marginal differences indepression (F¼ 2.15, p¼ 0.098).

b) Caregivers’ age and genderCaregivers’ age was found to be not significant when examined

in a multivariate framework together with other predictors thatobviously had a much stronger relation with overall burden ordepression. However, in a univariate analysis on the dimensions ofburden, correlation coefficients between caregiver’s age andburden showed that age is significantly correlated with factor 3(r¼ 0.33, p< 0.01), which means that the older the caregiver themore financial and health burden he has.

Contrary to intuition, caregivers’ gender was not found to besignificant either in predicting burden or depression, in themultivariate regression. Univariate analyses showed that genderdoes have some effect, especially for depression. This significanceseems to have been suppressed by the presence of more significantvariables in the multivariate setting. Regarding the factors ofburden, there was a significant difference in burden between malesand females for factor 3 (p¼ 0.04), where females have higherhealth and financial burden than males (mean 1.67 compared to1.27). Moreover, the independent samples t-test showed that thereis a significant difference between males and females (t¼ 2.21,p¼ 0.029), where females have higher depression compared tomales (mean 22.14 compared to 18.25).

c) Relation of caregiver to patientRelation of caregiver to patient is a variable with a categorical/

nominal form, and was not included in the predictors list in themultivariate regression. One-way ANOVA showed that there aresignificant differences in depression (F¼ 3.88, p¼ 0.005). Morespecifically, the highest depression levels are for daughters (mean23.31) and then follow spouses (mean 22.80), sons (mean 18.00),siblings (mean 17.30) and other (mean 13.71).

d) Patient’s age and health statusPatient’s age was found significant in predicting both burden

and depression. The same applies for all the factors of burden,except for factor 4, where the relation is not significant (r¼�0.108)and shows that the age of the patient does not play any role forburden associated with the management of care. The correlationcoefficients for factors 1–3 are respectively 0.29, 0.32, and 0.24.

Perceived health status of the patient, as described by the care-givers, was not found to be significant either for burden or depres-sion, in the multivariate regression. However, one-way ANOVAshowed that there are significant differences in depression (F¼ 3.45,p¼ 0.019). Explicitly, results showed that caregivers who say thatthe patient’s health is not good seem to have higher depressioncompared to those that say that it is very good (means 24.64 and17.94 respectively). Again, the significance of this variable disap-pears when it is interacted with the most significant predictors.

Support, information and burden

Following the results from multivariate regression, whichshowed that the use of social support is not significant, similarresults were obtained for family support and paid support, whereindependent sample t-tests showed that there are no significantdifferences either in burden (p¼ 0.65) or depression (p¼ 0.60)between those who used family support and those who did not orbetween those who used paid support and those who did not (p-value¼ 0.89 for burden, p-value¼ 0.15 for depression).

E. Papastavrou et al. / European Journal of Oncology Nursing 13 (2009) 128–136 133

Regarding the source of information about care, in addition tothe multivariate regression results, an independent samples t-testshowed that there are no significant differences in burden if thecaregiver had some source of information about care compared tothose that did not have any source (t¼ 0.29, p¼ 0.77). Similarly,there were no significant differences in depression (t¼ 0.71,p¼ 0.48). However, it is interesting to note that 60 caregivers(46.2%) had no information at all.

The details on descriptive statistics on all the main variablesalong with the (univariate) statistical tests (t-tests or one-wayANOVA tests) that were performed appear in detail in Table 4.

Coping strategies used by the caregivers

In this study, the overall scale reliability of the Greek translationof the ‘‘ways of coping questionnaire’’ was very good (Cronbach’sa¼ 0.87) and much higher than the original Greek translation(Karademas, 1998). The statement that had the highest mean was ‘‘Iwas hoping for a miracle’’ (mean 2.19) and followed ‘‘I was hopingthat time would change things and simply waited’’ (mean 2.14) and‘‘I found consolidation in my faith to God’’ (mean 2.05). These three

Table 4Descriptives and univariate tests for caregiver burden and depression (N¼ 130).

Characteristic N %

Caregiver genderMale 59 45.4Female 71 54.6

Relation of caregiver to patientSpouse 48 36.9Son 19 14.6Daughter 29 22.3Sibling 20 15.4Other 14 10.8

Caregiver level of educationElementary 18 13.8Secondary 29 22.3Higher 83 63.9

Caregiver income per yearUp to 17.000 46 35.417.001–35.000 46 35.435.001–50.000 30 23.1Over 50.001 8 6.2

Employment statusEmployed 88 69.8Unemployed 17 13.5Retired 17 13.5Stopped working because of care 4 3.2

Family supporta

Social 82 63.1Family 95 73.1Paid 42 32.3

Source of information about careNo information 60 46.2Doctors 10 7.7Nurses 26 20Doctors and nurses 31 23.9Other 3 2.3

Caregiver’s perceived health status of the patientVery good 53 40.8Good 45 34.6Not good 28 21.5Serious problems 4 3.1

(*) Differences are statistically significant at the 5% level.a Frequencies, percentages, means and standard deviations refer to caregivers who us

ways were very frequently used by most caregivers and they are allemotionally focused ways of coping. On the other hand, the state-ment that had the lowest mean was ‘‘I expressed my anger to thepatient’’ (mean 0.78) and followed ‘‘I dared to do something risky’’(mean 0.98). These two ways were the least used by caregivers andare included in the assertive ways of coping.

In addition, the 38 items were grouped into the five factors thathad been produced by factor analysis in the first translation (Kar-ademas, 1998), namely, positive approach, seeking social support,wishful thinking, avoidance strategies and assertiveness. The rela-tion between burden and the five factors was examined. Pearsoncorrelation coefficients were statistically significant only withpositive coping strategies (r¼�0.21) and wishful thinking(r¼ 0.21). The first correlation is negative, which means that whencaregivers use positive or problem-solving approaches have a lowerburden. The positive correlation between burden and wishfulthinking shows that when caregivers use emotionally focusedstrategies, such as wishful thinking or asking for God’s help havea higher burden. Results from one-way ANOVA showed that thereare significant differences in terms of which coping strategies areused more by caregivers (F¼ 27.81, p< 0.001). More specifically,

Burden Depression

Mean SD Mean SD

34.25 15.92 18.25 (*) 9.8539.39 15.64 22.14 (*) 9.96

38.67 14.50 22.80 (*) 9.4332.89 13.92 18.00 (*) 9.3642.03 16.63 23.31 (*) 8.9434.60 18.78 17.30 (*) 11.9330.43 15.12 13.71 (*) 8.25

43.56 (*) 15.67 24.76 (*) 12.0546.34 (*) 17.42 25.79 (*) 10.5432.41 (*) 13.50 17.51 (*) 8.29

41.50 (*) 15.49 23.61 (*) 10.1439.22 (*) 16.17 20.65 (*) 10.1629.87 (*) 13.58 16.80 (*) 8.7726.12 (*) 12.77 14.00 (*) 7.29

34.95 15.50 19.11 9.6743.35 18.53 23.75 11.7541.59 13.54 23.25 8.8746.25 17.46 27.00 10.23

36.5 16.08 20.79 10.8336.7 15.60 20.06 9.4536.8 16.04 18.52 9.65

37.91 17.72 21.49 11.2931.70 13.20 17.60 6.9039.84 13.99 20.37 8.6948.33 21.50 26.00 14.5234.93 14.20 19.13 8.93

32.74 14.37 17.94 (*) 8.6540.02 17.65 19.89 (*) 10.3340.68 15.44 24.64 (*) 10.1435.75 3.30 26.75 (*) 14.95

ed each type of support – as opposed to those (out of 130) who did not use it at all.

E. Papastavrou et al. / European Journal of Oncology Nursing 13 (2009) 128–136134

avoidance/denial strategies are significantly used more by care-givers (mean 1.80) and assertiveness strategies are used signifi-cantly less (mean 1.17). When considering high-burdenedcaregivers (burden above 44) results showed that caregivers withhigh burden use ‘‘wishful thinking’’ and ‘‘avoidance/denial’’ strat-egies significantly more compared to ‘‘positive approaches’’ and‘‘assertiveness’’ (F¼ 8.77, p< 0.001, means 1.81, 1.82 and 1.39, 1.28respectively). Similarly, caregivers with high depression wereexamined (depression above 16). Results showed that there aresignificant differences in the coping strategies used by caregiverswith high depression (F¼ 18.128, p< 0.001). That is, highlydepressed caregivers use ‘‘assertiveness’’ strategies significantlyless than ‘‘seeking social support’’ or ‘‘positive approach’’. All thesummary statistics about coping strategies appear in Table 5.

Gender differences were observed in one of the coping strate-gies used, namely ‘‘wishful thinking’’, where results showed thatfemales use this strategy significantly more than men (p-val-ue¼ 0.03, mean for males 1.62, mean for females 1.79, standarddeviations 0.48 and 0.43 respectively).

Discussion

This study aimed at exploring the subjective experience ofcaregiver burden in the context of cancer care. The overall meanscore of caregiver burden was 37.1 and is much higher whencompared to the results of similar studies using the same instru-ment for burden (Grunfeld et al., 2004; Higginson and Gao, 2008)although there are studies reporting lower levels (Gilbar, 1999).These differences can partly be explained by sampling variationsregarding the stage of illness (Grunfeld et al., 2004; Given et al.,2004), the lack of availability of support care services and socialnetworks or cultural differences which may aggravate such differ-ences. The finding that a large proportion of caregivers scoredhighly in the management of care dimension of burden regardlessof demographic characteristics, points to the need for earlyassessment, nursing diagnosis and potential intervention in thearea of caregiver education.

A large number of univariate analyses were performed, in orderto make comparisons on burden or depression among the differentgroups, which could increase the probability of Type I error,meaning that some of the results could be significant by chance.However, these univariate tests were only included as additional toa multivariate analysis (multiple regression analysis). In ourmultivariate setting all the factors affecting burden were entered ina single analysis, and were examined simultaneously, thus reducingthe possibility of false positive findings when variables are exam-ined individually.

In accordance to previous work, variables as gender, kinship andthe educational level of the caregiver are correlated with caregiverburden in general (Gilbar, 1999; Grunfeld et al., 2004; Given et al.,2004; Papastavrou et al. 2007). In terms of the perception of burdenby caregiver gender although there may not be clear cut andconsistent differences across studies, there is evidence of genderinequalities in caregiving, with women being more enmeshed in

Table 5Descriptive statistics of coping strategies used by all caregivers, the highly burdened and

Coping strategy N 130 (all the sample) mean SD N 42

Positive approach 1.54 0.50 1.39Seeking social support 1.59 0.58 1.55Wishful thinking 1.71 0.46 1.81Avoidance/denial 1.80 0.51 1.82Assertiveness 1.17 0.54 1.28

p< 0.001 p< 0.

the role and more exhausted by it, probably because they are morelikely to perform ‘‘hands on care’’. Another explanation may befound in the ways caregivers use to cope with the everyday caringtasks, and gender differences in the tendency to adopt problem oremotion-focused strategies of coping. It is also found that kinship isrelated with problems in emotional wellbeing and supports thecaregiving literature that kinship in terms of co-residing relativesincreases the vulnerability to poor health (Annestedt et al., 2000;Soskolne et al., 2007; Given et al., 2004; Chumbler et al., 2003).However, most of the studies explored kinship in the area ofdementia caregiving, although there are few studies that looked atkinship in the broader context of giving care to a relative withcancer (Schulman-Green et al., 2004; Kris et al., 2006).

The regression analysis for burden and depression with eightpredictor variables showed that caregiver’s income and educationand patient’s age are the most important predictors of burden anddepression. A negative correlation of patient age and caregiverdistress was reported in other studies of cancer care (Dumont et al.,2006) whereas other studies mention that the patient’s age is notan important predictor of burden or psychiatric morbidity (Braunet al., 2007). This difference may be explained by the mean age ofthe patients that is quite high in this study (60.14) and the possi-bility the age physical decline accompanied by the functionalproblems of cancer and cancer treatment might have influencedthe subjective perception of burden.

Moreover, a financial constraint experienced by the primarycaregiver that may trigger psychological distress, is a commonfinding in cancer caregiving research (Stommel et al., 1993). Recentliterature reviews for the existence and consequences of financialstress and strain for people with cancer identified a considerablenumber of studies worldwide reporting economic hardships for thepatient and the caregiver, as well as effects on the health andwellbeing of the household (Hanratty et al., 2007). Similarly, thelevel of education that was found as a strong predictor of burdenand depression in this study is indicating that either education mayact as a buffer or the more educated caregivers are equipped witha broader repertoire of coping strategies and focusing on theproblem solving instead on the emotional ones.

Caregivers in this study reported high levels of depressivesymptoms that, in many instances, equalled or exceeded thresholdsfor clinical depression on the CES-D (Given et al., 1997; Given et al.,2004). The correlation of burden and depression suggests thatperceived burden is a predictor of depression, supporting previousstudies (Raveis and Karus, 1999; Grunfeld et al., 2004; Tang et al.,2007; Braun et al., 2007) and adding to the argument that burdenand depression are virtually synonymous. In our study, depressivesymptoms of the participants occurred more frequently than inother community-based samples. It is reported that only 20% ofcommunity samples have a score of 16 or more on the CES-D(Raddloff, 1977) whereas in this study this percentage increased to66.4%. Although gender did not appear to be a significant predictorfor either burden or depression, when examined at the multivariateframework, when it was examined separately, significant genderdifferences were found in the level of depression, where females

the depressed.

(highly burdened) mean SD N 85 (depressed) mean SD

0.53 1.36 0.480.57 1.51 0.570.50 1.71 0.480.45 1.73 0.480.61 1.15 0.59

001 p< 0.001

E. Papastavrou et al. / European Journal of Oncology Nursing 13 (2009) 128–136 135

have higher depression compared to males. This result is differentfrom the results of other studies, where although gender predictedcaregiver burden it did not predict greater psychological distress(Gilbar, 1994).

It is also interesting that the highly burdened relatives in thisstudy used emotional focused strategies to cope with the stressors ofcaregiving, supporting the stress-coping theory (Lazarus and Folk-man). Emotion-focused coping mode instead of problem-focusedcoping mode is a common finding in cancer caregiving research(Kim et al., 2002). Given that the management of care dimension ofburden is independent of all other variables, the results suggest thatcoping skills intervention and professional support may be effectivein reducing burden related to the patients’ symptoms, as is proposedby other studies as well (McMillan et al., 2006).

In the present study the instrument for the caregiver assess-ment proved very reliable in relation to the investigation of theburden in cancer care research. In fact the Cronbach’s a is higher inthis study compared to similar ones (Higginson and Gao, 2008)with 0.94 and 0.85 respectively. The factor analysis revealed 4factors: role burden, personal burden, financial and health burdenand burden regarding the management of care. These dimensionsreflect important aspects of caregiving. The personal burden factorreflects the subjective dimension of the caregiver’s emotionalresponses to his/her caregiving experiences, such as feeling that thepatient needs more help than he or she really needs or feeling thatthe patient expects that the caregiver is the only person who canrely on. The role burden factor represents the more objectivedimension of burden related to the care, such as feeling unable tocontinue or wishing to leave the care to someone else. Similarfactors are reported in the study of cancer caregiving (Lowensteinand Gilbar, 2000) although only two factors were used according toa previously used analysis (Whitlatch et al., 1991). However, in thisstudy the financial and health burden reflects the perceived prob-lems of the caregiver related to health, like feeling that his or herhealth is suffering because of the caregiving stressors, and thatthere are not enough economic resources to support caring. Themanagement of care burden reflects feelings of inadequacy onbehalf of the caregivers, such as they could do better or they coulddo more for their relative.

One of the main strengths of this study is that it helps filling thegap of knowledge regarding the impact of caregiving on familycaregivers of patients suffering from cancer in Cyprus and extendsprevious research (Charalambous et al., 2008).

While the study was exploratory in nature, the inclusion ofwidely used research instruments allows for comparisons betweenthese data and other studies and demonstrates that the emotionalwellbeing associated with the cancer caregiving experiencedepends on a combination of variables.

Our study is not without limitations. The complexities andchallenges of conducting cancer care research are well recognized.The results are limited by the cross-sectional nature of the data,a self-selected sample, a heterogeneous sample of cancer types andthe preliminary status of the study, all of which may have beenintroduced bias and under-representation of caregivers with higherlevels of distress. Caregiving processes may also change as thedisease progresses and cross-sectional studies may not capture thedifferences in burden and emotional wellbeing in response to thechanges in the patient’s health. The small values of R2 indicated thatthe explanatory power of the model was rather small. Adding otherfactors that could potentially influence burden, which were notassessed in this study, would possibly increase R2 and improve thefit of the multiple regression model.

The findings point to the need for follow-up research and futurework should be conducted with the use of longitudinal data toexplore the effects of the disease trajectory to the family.

Conclusions

The current health system in Cyprus as in all countries is placingan increasing amount of responsibility on families to care for theirmembers with cancer at home, and the social and economic costs ofcaregiver burden are enormous. The findings from this study implythat families and especially the vulnerable primary caregivers needto be supported and health policies should be targeting atprevention of burden, promotion of emotional wellbeing andstrengthening the capabilities of caregivers to cope with thestressors and strains of caregiving.

Conflict of interest statement

This is to confirm that there weren’t any financial and personalrelationships with other people or organizations that could inap-propriately influence (bias) our work.

Acknowledgements

This study was supported in part by the Cyprus University ofTechnology. The authors are thankful to the participating familiesand the nurses who helped in the collection of data.

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