Open Communication With Terminally Ill Cancer ...

Copyright B 2013 Wolters Kluwer Health | Lippincott Williams & Wilkins

Yaacov G. Bachner, PhD Nili Yosef-Sela, RN, MA Sara Carmel, PhD

Open Communication With Terminally Ill Cancer Patients About Illness and Death A Comparison Between Spouses of Ashkenazi and Sephardi Ethnic Origins

K E Y

W O R D S

Background: Studies document that caregivers face severe difficulties in

Cancer

communicating with their loved ones about both illness and death. To date, a paucity

Caregiver

of studies has examined caregiver-patient communication at the end of life within the

Communication

context of ethnic origin. Objective: This study compares the level of open

Ethnicity

communication between caregivers from 2 ethnic groups and examines the

Patient

contribution of different caregiver characteristics and situational variables to the

Spouse

explanation of open communication. Methods: A total of 77 spouse caregivers of

Terminal

terminally ill cancer patients (comprising 41 Jews of Sephardi origin and 36 Jews of Ashkenazi origin) participated in the study. The questionnaire included measures of caregiver communication, caregiver characteristics (ie, age, gender, education level, optimism, self-efficacy), and situational variables (ie, duration and intensity of care). Results: Spouses of Ashkenazi origin communicated more with their loved ones about illness and death compared with their Sephardi counterparts. Ethnic origin accounted for 16.6% of the explained variance, caregiver characteristics added 20.3%, and situation variables lent a modest contribution of 3.5%. Four variables emerged as significant predictors of caregivers’ level of open communication: self-efficacy (" = .33, P G .05), gender (" = .32, P G .01), ethnic origin (" = .25, P G.05), and duration of care (" = .20, P G .05). Conclusions: These findings demonstrate the importance of ethnic origin to caregivers’ open communication with terminal cancer patients about illness and death. Moreover,

Author Affiliations: Department of Public Health and the Center for Multidisciplinary Research in Aging, Faculty of Health Sciences, Ben-Gurion University of the Negev, Be’er-Sheva, Israel. The authors have no funding or conflicts of interest to disclose.

Ethnicity and Open Communication

Correspondence: Yaacov G. Bachner, PhD, MA Program in Gerontology, Department of Public Health, Faculty of Health Sciences, Ben-Gurion University of the Negev, PO Box 653, Be’er-Sheva 84105, Israel ([email protected]). Accepted for publication October 25, 2012. DOI: 10.1097/NCC.0b013e31827b5c7a

Cancer NursingTM, Vol. 00, No. 0, 2013

Copyright © 2013 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

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communication level with patients is mostly explained by the caregiver characteristics. Implications for Practice: Caregiver characteristics should be considered by nurses when developing intervention programs for increasing caregivers’ level of open communication with dying patients.

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Background

Communicating about death and dying with an ill loved one is an emotionally demanding and exhausting process. Family members, and especially primary caregivers, often express the need to discuss the illness and its consequences.1 Nevertheless, family caregivers of cancer patients perceive and confront substantial barriers and difficulties in communicating openly with the patient about the illness and impending death.2 Open communication is defined as candid and straightforward discussion about the illness and death and expression of fears and emotions associated with them.3 Barriers to communication have been reported at all disease stages4; however, open discussion becomes more infrequent and increasingly difficult as illnesses progress. The patient’s prognosis and plans were found to be particularly distressing and difficult to discuss.5 In their study of family members of US cancer patients, Krant and Johnston6 reported that 92% thought about their relatives’ impending death, although only 22% discussed this eventuality with patients. A study that assessed end-of-life communication across 3 European countries revealed that in the last week of life, 30% to 40% of patients reported communication difficulties with their family members.7 Death and dying were the most difficult issues to discuss for terminally ill lung cancer patients and their family members during the final illness stages. Only 23% discussed end-of-life issues, and a mere 12% broached the topic of institutional hospice care.8 Previous research suggests that avoidance of open communication by caregivers of cancer patients can be a form of diminishing psychological distress and maintaining self-protection.3Y9 However, this avoidance negatively affects caregivers and care recipients alike. Negative feelings, uncertainty, lack of perceived control, diminished self-esteem, and other psychological problems have been reported by cancer patients who feel unable to discuss their prognosis openly with family members.10 In contrast, open expression of concerns and feelings appears to enhance both family members’ and patients’ ability to cope with cancer.11 Open communication also appears to predict higher levels of empathy and intimacy between patients and their spouses,12 higher levels of patient perceived support,10 and reduced feelings of caregiver burden.13 Several recent studies have reported an inverse association between open communication and negative caregiver affect such as depression and emotional exhaustion.2,14,15 As noted by Lepore and Helgeson,16 open discussion of thoughts and feelings may also facilitate meaningful interpretation of illness experiences and emotional acceptance of disease outcomes. Culture has a substantial impact on the communication between caregiver and patient. Individuals from different ethnic

origins perceive illness differently and therefore also exhibit different patterns of communication about the illness.17 BallardReisch and Lether18 report that culture shapes the style and the level of communication between caregivers and family members. Therefore, it is highly important to be mindful of the ethnic origin of caregivers19 because many of the difficulties faced by caregivers and care recipients stem from communication deficiencies that are rooted in the cultural atmosphere.20 Since its establishment in the mid 1900s, Israel has been a pluralistic immigrant absorption society. It is said that Jews have immigrated to modern Israel from 103 countries and speak more than 70 different languages. As such, Israel is a multicultural society composed of numerous subcultures, each with unique norms and values. These subcultures can be generally divided into 2 dominant Jewish ethnic groups: the Ashkenazim (the term comes from the old Hebrew word for Germany), which includes Jews from northern, central, and eastern Europe and North America; and Sephardim (the term comes from the old Hebrew word for Spain), which includes Jews from Mediterranean, Asian, and African countries.21 One substantial trait that distinguishes between these 2 groups is the preservation of religious observance.22,23 The Sephardim are less represented among the Ultra-Orthodox religious group as well as among the secular group, compared with the Ashkenazim. The Sephardim have their own unique religious customs, and their religious observance is carried out in a somewhat more compromising and practical manner. Furthermore, Sephardi families are usually larger (more children) than those of the Ashkenazim, and they tend to be more socially unified. Relationships among family members are usually formal and hierarchical and there is a clear division of responsibilities between the spouses. Finally, there is a disparity in allocation of resources between both ethnic groupsVAshkenazim have a prominent advantage over Sephardim regarding level of education, profession, standard of living, housing, and acquisition of capital. As a result, a higher proportion of Ashkenazim belong to high socioeconomic classes than their Sephardi counterparts.22Y24 To date, a paucity of studies has examined caregiver-patient communication at the end of life within the context of ethnic origin. Of those, most have focused primarily on the experience of patients.25 A study conducted 30 years ago assessed the communication patterns of Jewish cancer patients from different ethnic origins with significant others.26 The Ashkenazi patients reported an improvement in their general communicationV including discussing the illnessVwith their spouses, who were or became their significant other. They also tended to communicate more about the illness with their friends and medical staff and hence received more social support. On the other hand, the

2 n Cancer NursingTM, Vol. 00, No. 0, 2013 Copyright © 2013 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

Bachner et al

Sephardi patients reported a decline in communication abilities with their spouses, friends, and medical team. A scarce few of them openly communicated about the illness and revealed their feelings and emotions.26 There is a distinction in the literature between 3 main groups of variables that are associated with caregiving outcomes (eg, wellbeing and quality of life): variables pertaining to the caregiver, the patient, and the caregiving situation. In the current study, we examine communication as perceived by the caregiver and therefore concentrate on characteristics and situational variables pertaining to caregivers that were reported to be associated with caregivers’ outcomes (see Bachner et al14). In each group of variables, we assessed well-established variables as well as new factors. For example, in the caregivers’ characteristics group, we examined known variables such as depression/self-efficacy and newer ones such as fear of death and dying. In the group of situational variables, we assessed factors such as daily caregiving hours along with new ones such as perceived patient’s physical and emotional suffering. Our literature survey showed that communicating with a loved one about his/her terminal cancer and impending death is distressing and emotionally draining. As found in other studies, we believe that caregivers will try to avoid and diminish stress to maintain equilibrium of emotional well-being. Our focus is on spouses’ communication with their loved ones at the terminal stage of cancer. At this stage, communication becomes less frequent and increasingly difficult emotionally.4 Spouses are known to constitute most of caregivers and also to suffer more from the negative outcomes of caregiving compared with other family members. We propose to deepen the understanding of the associations between the above variables and spouse caregivers’ communication within the context of ethnic origin. By doing so, we will enable the development of specific strategies for enhancing open communication by spouse caregivers with their terminally ill loved ones at the end of life for their mutual benefit. The purpose of this study was 2-fold: to comparatively assess the level of open communication between caregivers of Ashkenazi and Sephardi ethnic background and to examine the contribution of different caregiver characteristics and situational variables to the explanation of open communication among caregivers within these 2 ethnic groups.

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Methods

This is a descriptive correlational study. Participants’ ethnic origin was determined according to their country of birth; Sephardi caregiver was defined as born in Asia, Africa, or the Mediterranean, whereas Ashkenazi caregiver was defined as born in Europe or North America. Inclusion criteria included spouses of terminal cancer patients older than 50 years who were considered to be the primary caregiver for the patient (ie, being the relative who provided the most hours of care per day for patients and hence had the most communication with him/her), same ethnic origin for caregiver and patient (to enable best comparison of caregiver communi-


cation between the 2 examined ethnic groups), immigrated to Israel after the age of 5 years, and fluent in Hebrew. The names of prospective participants were obtained over a 10-month period (May 2010-February 2011) from the list of patients from the home hospice unit of the center region of Clalit Health Services (Israel’s largest Health Maintenance Organization). These lists included the names of all cancer patients who received a diagnosis of terminal cancer (stage 4) during the past 6 months and were treated in their homes for at least 1 month. The patients had various types of cancer, with high frequency for breast and colorectal cancer. The home hospice unit is located in Tel-Aviv and serves a population of about 500,000 inhabitants. The unit consists of an interdisciplinary team of physicians, nurses, and social workers. The service is available 24 hours a day, 7 days a week. Each patient is assigned a specific team (physician, nurse, and social worker) that follows him/her on a regular basis. Patients are routinely seen twice weekly by the nurse and once a week by the physician and the social worker. At the end stage of life, patients are seen by the nurse on a daily basis. More than 80% of the patients die at home. The prospective participants were approached by experienced research assistants who described the study and invited their participation. The research assistants emphasized that the gathered data would be used exclusively for research purposes and that participation was fully voluntary. Individuals who agreed to participate completed a structured questionnaire at a time and a place that were convenient for them. The distribution and presentation of the questionnaires were identical for all respondents. Most participants completed the questionnaires in their homes, taking about 50 minutes on average. All participants signed an informed consent form. The study was approved by the Helsinki Ethics Committee of the Clalit Health Services.

Measures All study measures were completed by male or female caregivers. COMMUNICATION ABOUT ILLNESS AND DEATH

Communication about illness and death was measured using the Caregiver Communication With Patients About Illness and Death Scale.27 This scale consists of 5 statements that examine perceived communication openness of caregivers with terminal patients about their illness and death (ie, ‘‘I rarely speak with the patient about the illness because I do not want to make him/her sad’’; ‘‘I’m afraid to talk with the patient about the remainder of my life without him/her’’; ‘‘I do not know what to do or say to the patient about his/her suffering’’; ‘‘I avoid talking with the patient about his/her feelings and fears’’; and ‘‘I avoid talking with the patient about his/her close death’’). Degree of agreement with these statements is reported along a 5-point Likert-type scale, with responses ranging from 1, not at all, to 5, to a large extent. The total score is the average of responses to all items. The scale was reversed to adjust it to the other study variables so that high scores represent high level of open communication. This scale was used in previous studies Cancer NursingTM, Vol. 00, No. 0, 2013


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and was found valid,3,27 and its internal reliability was found high (! = .77).2,14,15,25 Cronbach ! in the current study was high (! = .91). CAREGIVER CHARACTERISTICS

Ethnic origin was determined according to participant’s selfreport of country of birth. Age and gender were obtained through self-report. Education was measured by the question ‘‘What is your highest education level?’’ with 3 categories: (1) elementary, (2) secondary, and (3) academic degree. Religiosity was measured by the question ‘‘I define myself as’’ (1) secular, (2) traditional, or (3) Orthodox. Economic status was measured by the question ‘‘How would you define your economic status?’’ Response was given on a 6-point scale, ranging from 1, very poor, to 6, excellent. Depression was measured using the Short Geriatric Depression Scale.28 The scale consists of 15 items that present different symptoms of depression (eg, ‘‘Do you often feel helpless?’’ and ‘‘Do you often get bored?’’). Responses were given in a dichotomous yes/no format. The total score is the summation of responses to all items; a high score represents a strong sense of depression. The Hebrew version of the Short Geriatric Depression Scale was found valid and reliable.29 Cronbach ! was high (! = .90). Emotional exhaustion was measured by the 5 items from the Maslach Burnout Inventory.30 The items were adapted to informal caregiving (eg, ‘‘I feel emotionally drained because of the care I provide to the care recipient’’ and ‘‘I feel tense because of the care I provide to the care recipient’’). Respondents rated each item on a 5-point scale, ranging from 1, not at all true, to 5, very true. The total score is the average of responses to all items; a high score represents a high sense of emotional exhaustion. This adapted subscale was formerly used in Hebrew and was found valid and reliable (! = .92).3 In the current study, the Cronbach ! was high (! = .92). Self-efficacy was measured by the General Self-efficacy Scale developed by Sherer and colleagues.31 Self-efficacy refers to personal judgment of how well behavior can be implemented in situations that contain novel, unpredictable, or stressful elements (eg, ‘‘I will always be able to solve difficult problems if I make enough efforts’’ and ‘‘I’m sure that I will be able to cope with unpredictable situations’’). We used the 10-item version of the scale. Responses were given on a 4-point scale, ranging from 1, does not describe me at all, to 4 describes me to a great extent. The total score is the average of responses to all items; a high score represents a strong sense of self-efficacy. The Hebrew version of the General Self-efficacy Scale was found valid and reliable.32 In the current study, Cronbach ! was high (! = .93). SITUATIONAL VARIABLES

Duration of caregiving was measured by the question ‘‘What is the total duration of caregiving (in months)?’’ The average hours of caregiving per day was measured by the question ‘‘In the last 3 months, on average, how many hours per day were you engaged in caregiving?’’

Level of perceived patient’s physical suffering was measured by the question ‘‘Rate the level of the physical suffering of the patient.’’ Responses were given on a 7-point scale, ranging from 1, doesn’t suffer at all, to 7, suffers very much. Level of perceived patient’s emotional suffering was measured by the question ‘‘Rate the level of the emotional suffering of the patient.’’ Responses were given on a 7-point scale, ranging from 1, doesn’t suffer at all, to 7 suffers very much. Level of perceived patient general functioning was measured by 1 item of the World Health Organization for assessing the general functioning level of patients: ‘‘Rate the general functioning level of the patient’’: 1, capable of doing all daily normal activities without limitations; 2, limited in strenuous physical activity but capable of doing light work; 3, not capable of doing any work but capable of taking care of himself/herself; 4, capable of taking care of himself/herself partially and bedridden most of the day; 5, not capable of taking care of himself/herself at all, completely bedridden. All situational variables were found valid3 and were used in former studies.2,3

Statistical Analysis Differences among mean values of continuous variables were tested using t test and analysis of variance. The associations between caregivers’ perceived level of open communication and the independent variables were examined with # 2, Pearson, or Spearman correlation coefficients according to scale structures. The relative contribution of the different variables to the explanation of caregivers’ level of open communication was examined by a hierarchical multivariate regression analysis. In the first block, the caregiver’s ethnicity was entered; in the second block, the caregiver’s characteristics were entered; and in the third, the situational variables were entered. Only variables that correlated significantly with the dependent variable of open communication in univariate analyses were included as independent variables in this analysis. Internal reliability of the different scales was assessed using Cronbach ! coefficient. The data were analyzed with the statistical software SPSS, PC version 17.0. Significance level was set at P G .05.

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Results

A total of 121 eligible caregivers were asked to take part in the study. Of those, 44 refused (77/121, 64% response rate). Most refusals occurred because of emotional difficulties encountered by caregivers. However, no significant differences were found between the participants and nonresponders with respect to sociodemographic characteristics of age, gender, number of children, and economic status. Hence, a total of spouse-caregivers of terminal cancer patients participated in this study, 41 of whom were caregivers of Sephardi origin and 36 were caregivers of Ashkenazi origin. Participants’ mean (SD) age was 70.35 (8.24) years, and most (n = 48, 62.3%) were women. They immigrated to Israel 57.48 (SD, 11.61) years ago, have been married for 48.12 (SD, 9.96)


Bachner et al

years, and had 3.3 (SD, 1.77) children on average. Twenty-four (31.2%) completed elementary education, 30 (39%) had secondary education, and 23 (29.9%) achieved an academic degree. Thirty-five (45.5%) defined themselves as secular; 28 (36.4%), as traditional; and 14 (18.2%), as Orthodox. A comparison between the sociodemographic characteristics of the 2 groups of caregivers, Sephardim and Ashkenazim, is presented in Table 1. No significant difference was found between the 2 groups in age, gender, years in Israel, years of marriage, or economic status. However, significant differences were found in regard to education level, level of religiosity, and number of children. The Ashkenazi caregivers were more educated and less religious and had fewer children than the Sephardi caregivers did. A significant difference in communication level was found between the 2 ethnic caregiver groups. Ashkenazi caregivers communicated more with their loved ones about the illness and death than their Sephardi counterparts (mean [SD], 3.61 [1.35] and 2.47 [1.65], respectively; t = j3.61, P G .01). Descriptive statistics of the caregiver and situation variables and their associations with communication level are presented in Table 2. No significant associations were found between open communication and caregivers’ religiosity, education, economic status, or emotional exhaustion. A significant negative association was found between caregivers’ age and open communication. Moreover, open communication was positively associated with self-efficacy and negatively with depression. In addition, female caregivers reported a higher level of open communication with care recipients in comparison with male caregivers. With regard to the situational variables, a significant negative association was found between the duration of caregiving and open communication. Associations between all the other situational variables and communication were found insignificant.

A correlation matrix of all the independent variables that were significantly associated with open communication was examined. The associations among the different variables were found to be low to moderate, in a range between r = 0.02 and r = 0.49 (duration of caregiving with age and self-efficacy with depression, respectively) in absolute value. It should be noted that most of the associations were found to be lower than r = 0.30. These results imply that the independent variables are relatively independent and related to different constructs. Ethnic origin and the significant caregiver’s characteristics and situational variables were examined as possible predictors of caregivers’ level of open communication in a hierarchical multivariate regression analysis (Table 3). In the first block, caregiver’s ethnicity was entered into the equation. Ethnicity emerged as a significant predictor of open communication. The model explained 16.6% of the observed variance and was found significant (F1,76 = 14.92, P G .001). The caregiver’s characteristics were entered simultaneously into the equation in the second block. This resulted in a significant change in R2 (with a substantial $R2 = 20.3%). Together, the variables in the equation explained 36.9% of the observed variance (F5,76 = 8.32, P G .001). Three variables emerged as significant predictors of open communication: self-efficacy, ethnicity, and gender. The situational variables were entered simultaneously to the equation in the third block. This resulted in a significant change in R 2 (with a modest $R 2 = 3.5%). Together, the variables in the equation explained 40.4% of the observed variance (F6,76 = 7.92, P G .001). Four variables emerged as significant predictors of open communication: self-efficacy (r = 0.430, B = 0.623, P G .05), gender (r = 0.263, B = 1.119, P G .01), ethnicity (r = 0.407, B = 0.809, P G .05), and duration of caregiving (r = j0.276, B = j0.033, P G .05). Most of these variables are caregiver’s characteristics.

Table 1 & Caregivers’ Sociodemographic Characteristics: A Comparison Between Caregiving Spouses of Ashkenazi Origin and Caregiving Spouses of Sephardi Origin Spouses of Ashkenazi Origin (n = 36) Variable

n (%)

Age, y Gender Men Women Years in Israel Years of marriage Number of children Economic status b Education level Elementary Secondary Academic degree Level of religiosity Secular Traditional Orthodox a

Mean (SD)

Spouses of Sephardi Origin (n = 41) n (%)

70.39 (8.69) 13 (36.1) 23 (63.9)

Mean (SD)

t/# 2

70.32 (7.94)

j0.04

16 (39.0) 25 (61.0) 58.53 47.64 2.69 3.97

(12.82) (10.91) (1.65) (0.97)

0.07 56.55 48.54 3.90 3.60

7 (19.4) 12 (33.3) 17 (47.2)

17 (41.5) 18 (43.9) 6 (14.6)

24 (66.7) 9 (25.0) 3 (8.3)

11 (26.8) 19 (46.3) 11 (26.8)

(10.52) (9.17) (1.70) (0.77)

j0.74 0.39 3.15a j1.82

10.34a 12.7a

P G .01. Ranging from 1 (very poor) to 6 (excellent).

b




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Table 2 & Descriptive Statistics of the Caregiver Characteristics and Situational Variables and Their Association With Open Communication (n = 77)

Variable

No. of Items

Range

5 1

Open communication Caregiver characteristics Age, y Genderb Male Female Education level Elementary Secondary Academic Level of religiosity Secular Traditional Religious Economic status Self-efficacy Depression Emotional exhaustion Situational variables Duration of caregiving, mo Daily caregiving hours Patient’s functioning Patient’s physical suffering Patient’s emotional suffering a

n (%)

Mean (SD)

Association With Open Communication

1Y5

2.90 (1.66)

Y

47Y86

70.35 (8.24)

r = j0.25a

29 (37.7) 48 (62.3)

t = -2.36a

1 24 (31.1) 30 (39.0) 23 (29.9)

F = 2.80

35 (45.5) 24 (31.1) 18 (23.4)

F = 0.97

1

1 10 15 5

1Y6 1Y4 0Y15 1Y5

3.78 (0.86) 2.95 (0.88) 12.16 (2.38) 3.83 (1.33)

r = 0.12 r = 0.43c r = j0.27a r = j0.11

1 1 1 1 1

4Y48 2Y24 1Y5 1Y7 1Y7

21.62 (10.09) 20.66 (6.28) 4.28 (0.81) 6.09 (1.66) 6.50 (1.01)

r = j0.28a r = 0.19 r = j0.08 r = 0.05 r = 0.09

P G .05. 1 = female, 2 = male. P G .01.

b b

Table 3 & Ethnic Origin, Caregiver’s Characteristics, and Situational Variables as Predictors of Caregivers’ Level of Open Communication With Patients About Illness and Death

Variables

B

SE B

"

F

Ethnic origin (Sephardim/Ashkenazim) Caregiver characteristics Ethnic originb Age Genderc Self-efficacy Depression

1.34

0.35

.41

3.86a

0.93 j0.02 0.99 0.67 j0.01

0.34 0.02 0.34 0.27 0.05

.28 j.10 .29 .36 j.01

2.77a j0.98 j2.97a 2.46d j0.03

Situational variables Ethnic originb Age Genderc Self-efficacy Depression Duration of caregiving

0.81 j0.02 1.12 0.62 j0.01 j0.03

0.34 0.02 0.33 0.27 0.05 0.02

.25 j.10 .32 .33 j.02 j.20

R2

$R2

0.166

0.369

0.203e

0.404

0.035d

2.41d j0.97 j3.35a 3.27d j0.12 j2.03d

Results of a hierarchical multivariate regression analysis (n = 77). a P G .01. b 1 = Sephardim, 2 = Ashkenazim. c 1 = female, 2 = male. d P G .05. e P G .001.


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Discussion

The current study comparatively assessed the level of open communication about illness and death between Ashkenazi and Sephardi caregiving spouses of terminal cancer patients and examined the associations between different caregiver characteristics, situational variables, and open communication among these 2 ethnic groups. Ashkenazi caregivers communicated more with their loved ones about the illness and death compared with their Sephardi counterparts. Even after 50 to 60 years of living in Israel, these 2 populations seemed to preserve the norms and customs of their ethnic groups. Sephardi families are characterized by formal and hierarchic relations between the spouses as well as a clear division of family roles, which may hinder open communication. In these families, the patient is usually not perceived by the spouse caregiver as the closest figure from an emotional perspective. Therefore, in times of life crises such as terminal illness, he/she will tend to approach another member of the nuclear family. On the other hand, in Ashkenazi families relationships are less formal and hierarchic, facilitating openness and ability to share feelings and fears between spouses.26 Regression analysis revealed that ethnic origin by itself accounted for 16.6% of the explained variance of open communication. This finding suggests that the caregiver’s ethnic origin is a substantial factor in the explanation of the spouse’s ability to communicate about illness and death with his/her terminally ill loved one at the end of life. The caregivers’ characteristics added a substantial percentage to the variance (20.3%), whereas the situational variables added only a small percentage (3.5%). Selfefficacy, gender, ethnic origin, and duration of caregiving (in this order) emerged as significant predictors of open communication. Hence, communication is mostly explained by ethnicity and caregivers’ characteristics. The higher the spouses rated their level of self-efficacy, the more they communicated with their ill loved ones. This finding is in accord with former studies.2,10,14 Self-efficacy is an important personality trait, defined as individuals’ beliefs about their capabilities to produce designated levels of performance that exercise influence over events that affect their lives.33 People with a high level of confidence in their capabilities approach difficult tasks as challenges to be mastered rather than as threats to be avoided.34 Among caregivers, self-efficacy was found to be negatively associated with strain, bad mood,35 emotional reactions to the demands of caregiving,3,36 and lower perception of burden of care.3 Spouses with a high sense of self-efficacy perceived the caring situation as challenging and more manageable; they may have felt less burdened and emotionally exhausted and were therefore able to communicate more with their loved ones. It was interesting to discover that female spouses communicate more than male spouses do, because past studies are nonconclusive regarding the association between caregiver’s gender and open communication. Whereas some studies did not find a significant association,2,10 others reported higher communication ability among women.12 The reason behind this difference may be the dissimilar emotional structure between men and women.


In general, women are more emotional, have a more developed therapeutic attitude, and are more sensitive to interpersonal behavior compared with men.37 In addition, some studies report that men perceive a higher level of burden of care compared with women.38 Therefore, in order not to increase this burden, they may avoid communicating with their loved ones about sensitive and emotionally consuming issues such as death and dying. Lastly, the more time spouses cared for their loved ones, the less they communicated with them about the illness and impending death. This finding is contrary to that of a recent retrospective study that reports a positive association between the duration of caregiving and open communication.2 As time passes, the patient’s physical and sometimes emotional condition gradually deteriorates and the recognition that he/she may not survive is subconsciously developed among caregivers. This process adds a massive emotional burden on the spouses that gradually erodes their emotional resources and diminishes their capability to openly communicate about delicate issues. This may be especially feasible for older caregivers who from the outset possess more limited emotional and physical resources than younger people.3

Study Limitations Some limitations of the study need to be acknowledged. As with all cross-sectional studies, no causality can be inferred. Also of note, our response rate was relatively low. Nevertheless, the rate is within the accepted limits for this type of research.39 Our actual sample size was relatively small and was derived from the list of patients of the home hospice unit of 1 Health Maintenance Organization in 1 geographical region. In addition, no differentiation was made regarding the patient’s type of cancer. Finally, some of the situational variables (eg, level of patient’s functioning and emotional suffering) were reported as perceived by the caregivers. Proxy reports are not always treated as fully reliable measures. Therefore, we recommend to replicate this study using a larger sample of caregivers of patients with various illnesses, cared for in different health settings, and derived by random recruitment.

Conclusion and Implications for Theory and Practice Despite these limitations, the findings of our study demonstrate the importance of ethnic origin and other caregivers’ characteristics to caregivers’ level of open communication with their terminally ill loved ones about the illness and death. On a theoretical level, this study contributes to the growing body of knowledge in the field of open communication between primary informal caregivers and terminal cancer patients about illness and death. Further examination of the associations between the caregivers’ characteristics and their level of open communication is warranted. Special attention should be given to caregivers’ ethnic origin, self-efficacy, and gender, which were found to be the strongest predictors of open communication. Broadening the knowledge behind these associations will have a positive effect on the well-being of caregivers and patients alike. Cancer NursingTM, Vol. 00, No. 0, 2013


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On a practical level, the development of strategies and intervention programs aimed at facilitating caregivers’ level of open communication with terminally ill cancer patients is needed. These programs should focus on 3 goals: (1) raise nurses’ awareness of the importance of open communication at the terminal stage, to implement it as an integral part of the comprehensive care given to patients and their families. This could be achieved through lectures given by professionals at seminars, conferences, and continuing education programs. (2) Direct nurses how to assess and evaluate caregivers’ level of open communication. Our study shows that nurses need to consider caregivers’ ethnic origin (cultural background), self-efficacy, gender, and duration of caregiving when assessing caregivers’ level of open communication with patients. Being Sephardi and male, having a low level of self-efficacy, and having cared for the patient for a long period are all associated with a lower level of open communication. Because ethnic origin, gender, and duration of caregiving are fixed factors, emphasis should be placed on promoting caregiver’s self-efficacy, a factor found to be strongly and positively correlated with open communication. And (3) develop methods for facilitating open caregiver-patient communication. Of the hospice team, the nurse probably has the most frequent, close, and intimate relationship with both the caregiver and patient. Therefore, he/she is perceived as a significant and convincing figure. Based on his/her evaluation of the communication level, the nurse must interact freely and openly about the illness and its implications and try to encourage conversations on these matters with and between the caregiver and the patient. These conversations should provide legitimization for the fears and concerns experienced by caregivers and patients and encourage free expressions of emotions. During these conversations, the nurse must also provide emotional and informational social support, both found to be positively associated with self-efficacy.3 These actions may also serve to strengthen caregivers’ ability to better cope with the hardship of caring for a family member having terminal cancer. Nonetheless, nurses should respect the wishes of those caregivers and patients who choose not to communicate openly. We believe that these interventions will be more beneficial for caregivers and patients who already practiced some level of open communication, compared with those whose communication level was low. Our recommendations are targeted mainly toward hospice nurses who care for patients from Sephardi and Ashkenazi ethnic origin. Future studies should continue investigating open communication among populations of caregivers from different ethnic origins in order to develop appropriate intervention programs.

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