Copyright B 2015 Wolters Kluwer Health, Inc. All rights reserved.
Yasemin Tokem, PhD Hanife Ozcelik, PhD Atiye Cicik, MScN
Examination of the Relationship Between Hopelessness Levels and Coping Strategies Among the Family Caregivers of Patients With Cancer K E Y
W O R D S
Background: Family caregivers who provide care for cancer patients may have
Cancer patient
to cope with a variety of physical, social, and economic problems during the
Coping strategies
caregiving process. A sense of hopelessness seems to lead to increasingly negative
Family caregivers
evaluations of new situations and less effective coping strategies. Objective: The
Hopelessness
objective of the study was to examine the relationship between hopelessness and the
Nursing practice
coping strategies of the family caregivers of oncology patients. Methods: This cross-sectional, descriptive correlational design study was carried out in the adult oncology unit and outpatient radiation oncology units of a university hospital in Turkey. The research sample was composed of 110 family caregivers. A sociodemographic data form, the Coping Stress Strategies Scale, and the Beck Hopelessness Scale were used in face-to-face interviews. Results: Significant correlations were found between hopelessness and coping strategies. There was a positive correlation between hopelessness and the helpless approaches, which constitute a part of the emotion-focused coping strategies (r = 0.254, P G .01). There was a negative correlation between hopelessness and problem-focused coping strategies (optimistic approach and seeking social support) (r = j0.484, P G .01; r = j0.190, P G .05). Conclusion: In our study, we found that when the hopes of family caregivers are raised, they may adopt a more optimistic approach, and seek more social support, and display more effective coping strategies.
Author Affiliations: Department of Nursing, Faculty of Health Science, Izmir Katip Celebi University (Dr Tokem); Zubeyde Hanim School of Health, Nigde University (Dr Ozcelik); and Newborn Intensive Care Unit, Buca Seyfi Demirsoy Hospital, Izmir, Turkey (Ms Cicik). The authors have no funding or conflicts of interest to disclose.
Correspondence: Yasemin Tokem, PhD, Department of Nursing, Faculty of Health Science, Izmir Katip Celebi University, Balatcik Campus, 35620, Cigli, Izmir, Turkey ([email protected]). Accepted for publication June 23, 2014. DOI: 10.1097/NCC.0000000000000189
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Tokem et al
Implications for Practice: This study could be used to help develop nursing interventions and efficient coping strategies. It suggests how oncology nurses may support family caregivers to increase their level of hope.
C
ancer has a substantial impact on both patients and their families. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) reported that one-third of patients required considerable assistance from a family member.1 The impact of a chronic illness on family members, especially those most responsible for caregiving, can vary greatly. In general, a chronic illness requiring high caregiving demands and long-term dependencies causes more strain.2 A large body of research substantiates the effects that cancer can have on the emotional, social, and physical well-being of family caregivers. Previous research has revealed that caregivers of cancer patients report negative effects on their own health such as anxiety, depression, fatigue, hopelessness, fear, guilt, regret, sleep problems, social isolation, and burnout.3Y5 It has been stated that patients with cancer and their family caregivers experience similar levels of depression. However, caregivers were significantly more anxious than the patients.6 Highly stressed family caregivers were found to be at increased risk of depression and health problems and to have increased mortality rates.7 Family caregivers who provide care for cancer patients may have to cope with a variety of physical, social, and economic problems during the caregiving process.8 Hopelessness is also characterized by persistently negative feelings and expectations about the future, as well as loss of motivation. A sense of hopelessness seems to lead to increasingly negative evaluations of new situations and less effective coping strategies; thus, the perception is that one will not accomplish anything meaningful.9,10 To date, very little research has investigated the relationship between coping and hopelessness. Thus, this study was aimed at assessing levels of hopelessness and caregiver coping strategies among family caregivers of oncology patients and examining the relationship between hopelessness and coping strategies among family caregivers.
The Conceptual Framework The conceptual framework guiding this study was Lazarus and Folkman’s11 theory of stress and coping. According to this theory, individuals use coping as a primary mechanism to adapt to their illness, which neutralizes the threatening situation effectively. Lazarus and Folkman proposed 2 modes of coping strategies used by individuals when they encounter stressful situations: problemfocused coping and emotion-focused coping. Problem-focused coping is an effort to control the stressful situation by altering the original source of the stress through changing behaviors or environmental conditions, whereas emotion-focused coping is an effort to control stress-related emotions by avoiding the stressful situation or reconstructing the context cognitively.11,12 The conceptualization of coping has recently been expanded to include coping efforts that serve an interpersonal regulation function. This function has been termed relationship-focused coping and refers to modes of coping aimed at managing, regulating, or preserving relationships during stressful periods.13
Hopelessness and Coping Strategies of Family Caregivers
Hope is a dynamic force that empowers the individual for adaptation to the future. It enables the individual to take an interest in their life and their future and to find meaning in life. Hope supports the positive approach and well-being and helps people maintain their relationships with others.14,15 It enables the individual to be oriented toward the future, to set goals, to make choices, to take decisions, and to be active. Herth14 stated that the most important feature of hope is that it gives confidence to the individual to make life changes.16 Hope has an important role in developing the coping powers of the family caregivers who assume the care of the individuals diagnosed with cancer. Hopelessness can be subdivided into 3 dimensions: an affective dimension (lack of hope), a motivational dimension (giving up), and a cognitive dimension (lack of future expectations).17 Hopelessness is also characterized by persistently negative feelings and expectations about the future as well as loss of motivation. A sense of hopelessness seems to lead to increasingly negative evaluations of new situations and less effective coping strategies; thus, the perception is that one will not accomplish anything meaningful. Assessment of hopelessness is also of critical importance in diseases with intensive clinical treatment such as cancer, because hopelessness is a basic element of a depressive disorder and a predictor of suicidal tendencies.9,10
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Relations Among Variables
A key psychosocial resource among family caregivers to manage and deal with their caregiving experience is hope.18Y20 The experience of hope in the family caregivers of individuals suffering from chronic diseases such as cancer was described in a metaanalysis conducted by Duggleby et al.21 This analysis included 14 studies, all of which emphasized the importance of hope for family caregivers irrespective of age, relationship, or setting. It was found that hope was a dynamic experience of possibilities within uncertainty. Furthermore, the extent of this uncertainty experienced by caregivers to achieve their hopes shaped the ways or processes that family caregivers would undergo to strengthen their hopes. Transitional shifting from a difficult present to a positive future constituted one of the main themes.16,21 Research conducted among family caregivers of patients in palliative care revealed lower hope levels in family caregivers when compared with the patients themselves, but younger family caregivers had higher levels of hope.22 Other research examining the meaning of hope for family caregivers of terminally ill patients indicated that general hope levels did not differ by variables including age, sex, employment, financial situation, education level, or length of caregiving time.14 More research is needed to understand the relationship between hopelessness and various demographic characteristics of family caregivers. Cancer NursingTM, Vol. 38, No. 4, 2015
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Objectives of the Study Specific study questions were as follows: 1. Which coping strategy, either problem-focused coping or emotion-focused coping, is used more frequently by family caregivers of oncology patients? 2. What is the relationship between hopelessness and the coping strategies of family caregivers? 3. What is the relationship between family caregivers’ sociodemographic variables and their coping strategies, and hopelessness?’’
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Methods
Research Design and Sample This cross-sectional, descriptive correlational design study was aimed at examining the relationship between levels of hopelessness and coping strategies among family caregivers of patients diagnosed with cancer. It was carried out in the adult oncology unit and outpatient radiation oncology units of a university hospital in the Western region of Turkey. The research sample was composed of 110 people who were relatives of inpatients in the oncology unit and those of patients having outpatient treatment in the radiation oncology unit. The inclusion criteria were (a) being 18 years or older, (b) being a relative to the patient (spouse, son/daughter, parent, brother/sister, or others), (c) having been informed about the patient’s status and disease, (d) taking an active role in patient care, and (e) participating voluntarily in the study.
for optimistic approach, 0.67 for helpless approach, 0.67 for submissive approach, and 0.70 for seeking social support approach. The reliability and validity study of the Beck Hopelessness Scale was conducted in Turkey by Durak.24 The highest score that can be obtained from the scale is 20. An increased total score demonstrates that the feeling of hopelessness is increased in the individual.24 The Cronbach’s " value of the Beck Hopelessness Scale in this study was calculated as .72.
Data Analysis Data were analyzed by computer using the SPSS 11.5 program (SPSS Inc, Chicago, Illinois). Descriptive statistics (number, percentage, and average) were used to determine family caregivers’ demographic characteristics. The relationship between hopelessness and coping strategies was examined with Pearson correlations. Differences between demographic characteristics, mean scores of coping strategies, and hopelessness scores were analyzed by t test statistic, 1-way analysis of variance, and by using the Tukey honestly significant difference test in the further analyses.
Ethical Considerations Written approvals to conduct the research were received from the Tulay Aktas¸ Oncology Hospital of the Medicine Faculty of Ege University and from Izmir Ataturk Education and Research Hospital, and verbal and written informed consent was obtained from all the family caregivers who were willing to take part in the study. All questionnaires were completed by the face-to-face interview method.
Results
Measurements
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Research data were collected via an Individual Identification Form, the Coping Stress Strategies Scale, and the Beck Hopelessness Scale by the researcher in face-to-face interviews. The individual identification form, which includes sociodemographic features and disease-related information of the patient’s relatives, was developed by the researcher. The validity and reliability study of the Coping Stress Strategies Scale, which was adapted into Turkish from the Ways of Coping Inventory Scale developed by Folkman and Lazarus,11 was carried out by Sahin and Durak.23 This scale has 2 dimensions that may be termed ‘‘effective approaches to problems’’ and ‘‘ineffective approaches to emotions.’’ These 2 dimensions are reflected in 5 subdimensions, which include ‘‘self-confident approach (7 questions),’’ ‘‘optimistic approach (5 questions),’’ ‘‘helpless approach (8 questions),’’ ‘‘submissive approach (6 questions),’’ and ‘‘seeking social support approach (4 questions).’’ Each item is scored from 0 to 3, where 0 = almost none, 1 = a little, 2 = much, and 3 = very much. Scores are calculated separately for each subdimension, and hence an overall score is not calculated. Increase in the total score for each approach is evaluated to mean that the individual uses that coping style much more than the others. We calculated the internal consistency coefficients of the tool and found the following values: 0.66 for self-confident approach, 0.68
Sample Characteristics The average age of study participants was 43.13 (SD, 12.65) years; 23.6% were spouses, and 33.6% stated they were a relative to the patient (eg, brother or sister, cousin, uncle or aunt, etc). The majority of family caregivers were female (67.3%) and married (76.4%) (Table 1).
Coping Strategies and Hopelessness of Family Caregivers The mean score of the helpless approaches, one of the emotionfocused coping strategies, was higher than the others (mean, 13.37 [SD, 2.7]). The lowest mean score was found in the optimistic approaches, which constituted one of the problem-focused coping strategies (mean, 7.25 [SD, 1.8]). Table 2 shows the range of scores and the mean score of each factor. The mean score of hopelessness was found to be 8.57 (SD, 2.4). Significant correlations were found between hopelessness and coping strategies. There was a positive correlation between hopelessness and helpless approaches, which constitute one of the emotionfocused coping strategies (r = 0.254, P G .01) (Table 3). The mean
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Tokem et al
Table 1 & Characteristics of Family Caregivers
Table 2 & Coping Strategies Used by
(n = 110)
Characteristics
n
Family Caregivers
%
Gender Female 74 67.3 Male 36 32.7 Age, mean (SD), y 43.13 (12.65) Marital status Married 84 76.4 Single 15 13.6 Divorced/separated 11 10.0 Educational level Nonliterate 7 6.4 Primary school 52 47.3 Secondary school 19 17.3 High school 19 17.3 University 13 11.8 Income level Low 61 55.5 Moderate 46 41.8 High 3 2.7 Relationship to patient Spouse 26 23.6 Parent 12 10.9 Daughter/son 25 22.7 Relative 37 33.6 Other person (friends, neighbors, etc) 10 9.1 Duration of caregiving, mo 1Y11 65 59.1 12Y23 23 20.9 24Y35 6 5.5 936 16 14.5 Care support from other family members Present 93 84.5 Absent 17 15.5 Caregivers’ perceiving their health in the last 2 wk Good 72 65.5 Bad 22 20.0 Uncertain 16 14.5
score of the helpless approaches was observed to increase with an increase in the mean score of hopelessness. There was a negative correlation between hopelessness and problem-focused coping strategies (optimistic approach and seeking social support) (r = j0.484, P G .01; r = j0.190, P G .05) (Table 3). The mean score of the problem-focused coping strategies increased with a decrease in the mean score of hopelessness.
Ways of Coping With Stress (n = 110) Seeking social support approaches Optimistic approachesa Submissive approachesb Helpless approachesb Self-confident approachesa a
Mean (SD) a
9.40 7.25 10.68 13.37 12.11
The relationships among mean scores of subdimensions of coping strategies and demographic variables were examined by 1-way analysis of variance. The scores of the emotion-focused coping strategies were significantly related to education and the duration of care-
Hopelessness and Coping Strategies of Family Caregivers
6 1 4 7 3
11 11 14 23 18
Problem-focused coping. Emotion-focused coping.
b
giving. However, the scores of the problem-focused coping strategies were significantly related to education. The scores of the emotion-focused coping strategies were not significantly related to income level and care support from other family members. However, the scores of the problem-focused coping strategies were not significantly related to income level, relationship to the patient, or duration of caregiving (Table 4). We found a statistically significant relationship between the relationship to the patient and helpless approaches, one of the emotion-focused coping strategies (P G .05). A statistically significant relationship was also observed between care support from other family members and seeking social support approaches, which was one of the problem-focused coping strategies (P G .05) (Table 4). A statistically significant relationship was also found between mean scores of hopelessness and education level (P = .008) and income (P = .004) of caregivers (P G .05) (Table 4).
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Discussion
According to the results of our study, the most frequently applied strategy was the helpless approach, which is one of the emotionfocused coping strategies, whereas the least used coping strategy was the optimistic approach, a problem-focused coping strategy. This means that caregiving families mostly adopt an emotional attitude toward their problems related to the caregiving process and feel helpless. Considering that cancer is a devastating illness that cannot be resolved solely by individual appraisal and efforts,
Table 3 & Correlation Between Ways of Coping With Stress and Hopelessness
Hopelessness Ways of Coping With Stress
Relationships Between Sociodemographic Variables and Coping Strategies and Hopelessness
(1.16) (1.87) (2.05) (2.76) (2.51)
Min Max
Seeking social support approaches Optimistic approachesa Submissive approachesb Helpless approachesb Self-confident approachesa
a
r
P
-0.190 -0.484 0.048 0.254 0.179
.004 .005 .615 .007 .062
Bold values are statistically significant at P G .05. a Problem-focused coping. b Emotion-focused coping.
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Table 4 & Distributions of Mean Scores of Subgroups of Coping Strategies and Hopelessness According to Demographic Variables of Caregivers
Gender Female (n = 74) Male (n = 36) P Marital status Married (n = 84) Single (n = 15) Widowed (n = 11) P Educational level Nonliterate (n = 7) Primary school (n = 52) Secondary school (n = 19) High school (n = 19) University (n = 13) P Income level Low (n = 61) Moderate (n = 46) High (n = 3) P Relationship to patient Spouse (n = 26) Parent (n = 12) Daughter/son (n = 25) Relative (n = 37) Other person (friends, etc) (n = 10) P Duration of caregiving, mo 1Y11 (n = 65) 12Y23 (n = 23) 24Y35 (n = 6) 936 (n = 16) P Care support from other family members Present Absent P
Self-confident Approachesa
Optimistic Approachesa
Submissive Approachesb
Hopelessness Scores
7.81 (1.20) 7.39 (1.34) .099
7.81 (1.20) 12.42 (3.24) .576
7.81 (1.20) 12.72 (2.79) .086
7.81 (1.20) 10.72 (2.24) .887
7.81 (1.20) 7.14 (1.84) .654
6.92 (3.91) 8.44 (3.79) .055
7.68 (1.21) 7.20 (1.52) 8.27 (1.01) .379
12.27 (2.18) 11.40 (4.01) 11.91 (2.43) .123
7.68 (1.21) 14.40 (3.40) 12.73 (2.00) .086
7.68 (1.21) 9.93 (3.15) 10.27 (1.95) .540
7.68 (1.21) 8.13 (2.20) 5.27 (2.05) .042c
7.60 (3.85) 7.20 (3.84) 6.36 (4.74) .060
7.86 (0.69) 7.62 (1.21) 7.42 (1.39) 8.00 (1.33) 7.69 (1.44) .041c
13.29 (2.06) 13.04 (2.38) 11.95 (2.72) 11.32 (2.39) 10.00 (3.08) .035c
11.29 (2.43) 13.31 (2.41) 13.42 (3.93) 13.32 (2.43) 14.77 (2.28) .084
11.57 (1.62) 11.00 (1.60) 11.11 (1.52) 9.53 (2.32) 10.00 (3.32) .030c
5.14 (2.19) 6.98 (1.78) 7.58 (1.50) 7.47 (1.87) 8.69 (1.44) .020c
10.00 (3.61) 8.31 (4.02) 6.32 (3.68) 6.95 (3.55) 4.77 (2.83) .008c
7.54 (1.27) 7.87 (1.24) 7.33 (1.15) .086
12.34 (2.82) 11.89 (2.07) 11.00 (2.00) .607
13.08 (2.79) 13.39 (2.31) 19.00 (3.61) .261
10.74 (2.20) 10.72 (1.82) 9.00 (2.65) .488
6.85 (2.04) 7.70 (1.55) 8.67 (0.58) .450
8.49 (3.87) 6.15 (3.70) 5.00 (1.00) .004c
7.77 7.92 7.52 7.57 7.90
12.61 13.25 11.28 12.14 11.50
13.58 12.58 13.52 13.35 13.50
10.73 11.67 9.36 11.14 11.00
6.92 6.58 7.48 7.35 8.00
8.04 8.42 6.56 7.62 6.00
(1.31) (0.90) (1.36) (1.34) (0.99)
.418
Seeking Social Helpless Support Approachesa Approachesb
(2.07) (1.48) (3.18) (2.66) (1.35)
.464
(3.25) (2.31) (2.50) (2.75) (2.99)
.549
(1.69) (1.15) (2.22) (2.02) (2.31)
.007c
(1.92) (2.68) (1.69) (1.58) (2.05)
.385
(3.78) (4.25) (3.32) (4.15) (4.40)
.776
7.45 (1.29) 7.96 (0.98) 8.00 (0.63) 8.06 (1.53) .281
12.35 (2.91) 12.30 (1.55) 11.17 (2.99) 11.25 (1.29) .083
13.18 (3.13) 12.83 (2.04) 14.67 (2.73) 14.44 (1.67) .223
10.78 (2.18) 10.96 (1.94) 9.33 (1.97) 10.38 (1.67) .011c
6.95 (2.04) 7.48 (1.70) 7.83 (1.94) 7.96 (1.06) .007c
8.02 (3.90) 7.17 (3.19) 5.33 (1.51) 6.13 (5.12) .407
7.60 (1.25) 8.13 (2.20) .151
12.05 (2.51) 12.50 (2.58) .949
13.06 (2.45) 15.19 (3.78) .000c
10.77 (2.09) 10.19 (1.83) .070
7.27 (1.75) 7.19 (2.54) .088
6.88 (5.30) 7.51 (3.66) .000c
a
Problem-focused coping. Emotion-focused coping. c P e .05. b
more frequent use of emotion-focused coping strategies by caregivers with cancer may be justifiable.11 Similarly, Papastavrou et al25 detected that, in general, emotion-focused coping strategies were used in the caregiving families. However, Kim26 indicated that caregivers more frequently applied problem-focused coping strategies. Family caregivers need to be integrated in the patient care, and their coping abilities (both emotion-focused and problemfocused) need to be empowered. Their abilities to cope with caregiver burden need to be reinforced through appropriate strategies offered at the institutional level that target personal coping by family caregivers as well as patients.
Coping strategies may be an important factor influencing hopelessness. To our knowledge, this is the first study to examine the relationship between hopelessness and caregiver coping strategies among Turkish family caregivers of patients diagnosed with cancer. A negative relationship was found between the hopelessness and seeking social support approach and the optimistic approach, which are problem-focused strategies. However, a positive relationship was detected between hopelessness and helpless, which is one of the emotional coping strategies. In other words, as hopelessness levels of the caregivers increase, they become less optimistic and seek less social support, and in turn, they become
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Tokem et al
more helpless. This result supports the hypothesis that when family caregivers seek social support and adopt a more optimistic attitude, their level of hopelessness is decreased. All of the studies suggest that hope is an effective and positive tool for facilitating coping and for quality of life.18,19 In a quantitative study, Chapman and Pepler20 found positive correlations between hope and constructive coping in a self-selected sample, of which 33 of 61 family members were caregivers. In a study conducted by Lohne et al16 on families of patients with advanced-stage cancer, a significant relationship was found between the low level of hope of family caregivers and increased stress levels experienced by them. This result shows parallelism with the findings of our study. McMillan and Small7 detected that symptoms observed in family caregivers and their caregiving duties may be alleviated with interventions based on effective coping strategies. Van Laarhoven et al17 determined that the symptoms and hopelessness levels of individuals may be reduced by using effective coping strategies, and in this manner, their life qualities and functional situations may also be improved. Family members were encouraged to find a positive meaning in the illness together, which relied on their ability to maintain hope and optimism about the future.25,27 In our study, the score of hopelessness decreased as education levels of the caregivers increased. Also, as the education levels of caregiving families decreased, they were found to use emotionfocused coping strategies much more frequently. Likewise, Tan and Karabulutlu28 detected that individuals with higher education levels displayed more effective coping strategies. Ben-Zur et al29 and Brinson and Brunk30 also found out that individuals with high education levels could obtain better resources to find solutions to the problems and ensure effective coping through effective information and help. In our study, the scores of hopelessness of individuals who were assisted by another family member during caregiving were lower. Some studies have indicated the value of a supporting individual to a caregiver. For instance, a family member or friend can provide sporadic relief from caregiving duties as well as psychological support to both the patient and the caregiver.7,31 In some studies, caregivers reported feeling reassured when they had a source of support and received assistance, including information and financial, emotional, and practical support.12 Therefore, healthcare professionals should encourage caregivers to request and receive assistance from family, friends, and formal caregivers.32 A statistically significant relationship was also observed between care support from other family members and seeking social support approaches, one of the problem-focused coping strategies. Support and assistance from family members are beneficial in helping the patient cope with stress resulting from the disease and its treatment. Based on these results, social support is a major coping strategy for caregivers. According to previous studies, social support has been found to be the most important coping strategy and resource.25,33 There was a significant relationship between the use of emotionfocused coping strategies by the caregiving families and the duration of care. In the first several years of the caregiving process, caregiving families reported more helpless approaches. Family caregivers of cancer patients receive little preparation, information, or support to carry out their caregiving role. They are often expected to navigate through an increasingly complex and frag-
Hopelessness and Coping Strategies of Family Caregivers
mented healthcare system on their own and to find whatever help that may be available. Family caregivers need to assume an excessive number of duties when they take on the household or family responsibilities of the patients in addition to their own duties.3 Thus, caregiving families should be prepared by nurses who are specialized in providing care concerning the points related to the caregiving process including comfort, physical care, emotional and social support, and information. Preparing the caregiving families for their roles and enabling them to use the support systems are of paramount importance for them to cope with the problems encountered in the caregiving process and to develop effective coping strategies to solve such problems. Caregiving is labor intensive, with approximately a quarter of those caring for cancer patients spending in excess of 40 hours a week providing these services to family or friends. The level of care required by the care recipient is a major factor that influences the caregiver’s life and affects his/her health. Caregivers of cancer patients providing higher levels of support are more likely to report negative outcomes, less likely to be effective partners in the patient’s care, and more likely to postpone their own healthcare needs.34 They provide extraordinary and uncompensated care that is physically, emotionally, socially, and financially demanding and can result in the neglect of their own needs. The burdens of family caregiving include time and logistics, physical tasks, financial costs, emotional burdens, mental health, and other health risks.35 Whereas hopelessness levels of caregiver families were not affected by gender, marital status, relationship/closeness to the patient, or duration of care, they were found to be influenced by the education level, economic status, and care support of another family member. Herth14 reported that hope level was not affected by gender or profession. Tan and Karabulutlu28 determined that marital status did not affect the hopelessness level. However Mystakidou et al36 found that family status proved to be the strongest predictor of caregivers’ feelings of hopelessness, with caregivers of married patients experiencing more hopelessness. In our research, scores of hopelessness were found to be lower among caregivers in better economic situations. Likewise, Yun et al2 detected a strong relationship between insufficient economic resources and the life quality of the caregiver. The financial resources of families and the hopelessness levels of caregivers are closely associated. Financial support may increase the hope levels of caregiving families.
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Conclusion
Caregiving families became less optimistic over time and experienced more despair and perceived less social support. In line with these results, we recommend that nurses in this field intervene to help caregiving families use problem-focused coping approaches.
References 1. Covinsky KE, Goldman L, Cook EF, et al. The impact of serious illness on patients’ families. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. JAMA. 1994; 272:1839Y1844.
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2. Yun YH, Rhee YS, Kang IO, et al. Economic burdens and quality of life of family caregivers of cancer patients. Oncology. 2005;68:107Y114. 3. Northouse LL, Katapodi M, Song L, Zhang L, Mood DW. Interventions with family caregivers of cancer patients: meta-analysis of randomized trials. CA Cancer J Clin. 2010;60(5):317Y339. 4. Lobchuk MM, Degner LF, Chateau D, Hewitt D. Promoting enhanced patient and family caregiver congruence on lung cancer symptom experiences. Oncol Nurs Forum. 2006;3;33(2):273Y282. 5. Lobchuk MM, Vorauer JD. Family caregiver perspective-taking and accuracy in estimating cancer patient symptom experiences. Soc Sci Med. 2003; 57(12):2379Y2384. 6. Hacialioglu N, Ozer N, Karabulutlu EY, Erdem N, Erci B. The quality of life of family caregivers of cancer patients in the East of Turkey. Eur J Oncol Nurs. 2010;14:211Y217. 7. McMillan SC, Small BJ. Using the COPE intervention for family caregivers to improve symptoms of hospice home care patients: a clinical trial. Oncol Nurs Forum. 2007;34(2):313Y321. 8. Osse BHP, Vernooij-Dassen MJFJ, Schade E, Grol RPTM. Problems experienced by the informal caregivers of cancer patients and their needs for support. Cancer Nurs. 2006;29(5):378Y388. 9. Mystakidou K, Tsilika E, Parpa E, et al. Illness-related hopelessness in advanced cancer: influence of anxiety, depression, and preparatory grief. Arch Psychiatr Nurs. 2009;23(2):138Y147. 10. Pehlivan S, Ovayolu O, Ovayolu N, Sevinc A, Camci C. Relationship between hopelessness, loneliness, and perceived social support from family in Turkish patients with cancer. Support Care Cancer. 2012;20:733Y739. 11. Lazarus RS, Folkman S. Stress, Appraisal and Coping. New York: Springer; 1984. 12. Tan M. Social support and coping in Turkish patients with cancer. Cancer Nurs. 2007;30(6):498Y504. 13. O’Brien TB, DeLongis A. The interactional context of problem-emotion, and relationship-focused coping: the role of the big five personality factors. J Pers. 1996;64:4:775Y813. 14. Herth K. Abbreviated instrument to measure hope: development and psychometric evaluation. J Adv Nurs. 1992;17:1251Y1259. 15. McClement SE, Chochinov HM. Hope in advanced cancer patients. Eur J Cancer. 2008;44(8):1169Y1174. 16. Lohne V, Miaskowski C, Rustøen T. The relationship between hope and caregiver strain in family caregivers of patients with advanced cancer. Cancer Nurs. 2011:00(0):1Y7. 17. Van Laarhoven HWM, Schilderman J, Bleijenberg G, et al. Coping, quality of life, depression, and hopelessness in cancer patients in a curative and palliative, end-of-life care setting. Cancer Nurs. 2011;34(4):302Y314. 18. Borneman T, Stahl C, Ferrell BR, Smith D. The concept of hope in family caregivers of patients at home. J Hosp Palliat Nurs. 2002;4(1):21Y33. 19. Herth K. Hope in the family caregiver of terminally ill people. J Adv Nurs. 1993;18:538Y548.
20. Chapman KJ, Pepler C. Coping, hope, and anticipatory grief in family members in palliative home care. Cancer Nurs. 1998;21(4):226Y234. 21. Duggleby W, Holtslander L, Kylma J, Duncan V, Hammond C, Williams A. Metasynthesis of the hope experience of family caregivers of persons with chronic illness. Qual Health Res. 2010;20(2):148Y158. 22. Benzein EG, Berg AC. The level of and relation between hope, hopelessness and fatigue inpatients and family members in palliative care. Palliat Med. 2005;19(3):234Y240. 23. S¸ahin HN, Durak A. Stresle bas¸a c¸Nkma tarzlarN o¨lc¸eg˘i: u¨niversite o¨g˘rencileri ic¸in uyarlanmasN [A brief of coping styles inventory for university students]. Tu¨rk Psikol Derg (Turk J Psychol). 1995;34:56Y73. 24. Durak A. Beck umutsuzluk o¨lc¸eg˘i (BUO) gec¸erlik ve gu¨venirlik c¸alNs¸masN (The validity and reliability of the Beck Hopelessness Scale). Tu¨rk Psikol Derg (Turk J Psychol). 1994;9:1Y11. 25. Papastavrou E, Charalambous A, Tsangari H. How do informal caregivers of patients with cancer cope: a descriptive study of the coping strategies employed. Eur J Oncol Nurs. 2012;16(3):258Y263. 26. Kim HS. The comparison of the stress and coping methods of cancer patients and their caregivers. Taehan Kanho Hakhoe Chi. 2003;33(5):538Y543. 27. Northfield S, Nebauer M. The caregiving journey for family members of relatives with cancer: how do they cope? Clin J Oncol Nurs. 2010;14(5): 567Y577. 28. Tan M, Karabulutlu E. Social support and hopelessness in Turkish patients with cancer. Cancer Nurs. 2005;28(3):236Y240. 29. Ben-Zur H, Gilbar O, Lev S. Coping with breast cancer: patient, spouse, and dyad models. Psychosom Med. 2001;63:32Y39. 30. Brinson SV, Brunk Q. Hospice family caregivers: an experience in coping. Hosp J. 2000;5(3):1Y12. 31. Duggleby W, Wright K, Williams A, Degner L, Cammer A, Holtslander L. Developing a living with hope program for caregivers of family members with advanced cancer. J Palliat Care. 2007;23(1):24Y31. 32. Given B, Wyatt G, Given C, et al. Burden and depression among caregivers of patients with cancer at the end of life. Oncol Nurs Forum. 2004;31(6): 1105Y1117. 33. Williams SW, Williams CS, Zimmerman S, Munn J, Dobbs D, Sloane DP. Emotional and physical health of informal caregivers of residents at the end of life: the role of social support. J Gerontol Ser B Psychol Sci Soc Sci. 2008; 63:171Y183. 34. Bevans MF, Sternberg EM. Caregiving burden, stress, and health effects among family caregivers of adult cancer patients. JAMA. 2012;307(4): 398Y403. 35. Blumand K, Sherman DW. Understanding the experience of caregivers: a focus on transitions. Semin Oncol Nurs. 2010;26(4):243Y258. 36. Mystakidou K, Tsilika E, Parpa E, Galanos A, Vlahos L. Caregivers of advanced cancer patients; feelings of hopelessness and depression. Cancer Nurs. 2007;30(5):412Y418.
E34 n Cancer NursingTM, Vol. 38, No. 4, 2015 Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.
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Yasemin Tokem, PhD Hanife Ozcelik, PhD Atiye Cicik, MScN
Examination of the Relationship Between Hopelessness Levels and Coping Strategies Among the Family Caregivers of Patients With Cancer K E Y
W O R D S
Background: Family caregivers who provide care for cancer patients may have
Cancer patient
to cope with a variety of physical, social, and economic problems during the
Coping strategies
caregiving process. A sense of hopelessness seems to lead to increasingly negative
Family caregivers
evaluations of new situations and less effective coping strategies. Objective: The
Hopelessness
objective of the study was to examine the relationship between hopelessness and the
Nursing practice
coping strategies of the family caregivers of oncology patients. Methods: This cross-sectional, descriptive correlational design study was carried out in the adult oncology unit and outpatient radiation oncology units of a university hospital in Turkey. The research sample was composed of 110 family caregivers. A sociodemographic data form, the Coping Stress Strategies Scale, and the Beck Hopelessness Scale were used in face-to-face interviews. Results: Significant correlations were found between hopelessness and coping strategies. There was a positive correlation between hopelessness and the helpless approaches, which constitute a part of the emotion-focused coping strategies (r = 0.254, P G .01). There was a negative correlation between hopelessness and problem-focused coping strategies (optimistic approach and seeking social support) (r = j0.484, P G .01; r = j0.190, P G .05). Conclusion: In our study, we found that when the hopes of family caregivers are raised, they may adopt a more optimistic approach, and seek more social support, and display more effective coping strategies.
Author Affiliations: Department of Nursing, Faculty of Health Science, Izmir Katip Celebi University (Dr Tokem); Zubeyde Hanim School of Health, Nigde University (Dr Ozcelik); and Newborn Intensive Care Unit, Buca Seyfi Demirsoy Hospital, Izmir, Turkey (Ms Cicik). The authors have no funding or conflicts of interest to disclose.
Correspondence: Yasemin Tokem, PhD, Department of Nursing, Faculty of Health Science, Izmir Katip Celebi University, Balatcik Campus, 35620, Cigli, Izmir, Turkey ([email protected]). Accepted for publication June 23, 2014. DOI: 10.1097/NCC.0000000000000189
E28 n Cancer NursingTM, Vol. 38, No. 4, 2015 Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.
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Implications for Practice: This study could be used to help develop nursing interventions and efficient coping strategies. It suggests how oncology nurses may support family caregivers to increase their level of hope.
C
ancer has a substantial impact on both patients and their families. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) reported that one-third of patients required considerable assistance from a family member.1 The impact of a chronic illness on family members, especially those most responsible for caregiving, can vary greatly. In general, a chronic illness requiring high caregiving demands and long-term dependencies causes more strain.2 A large body of research substantiates the effects that cancer can have on the emotional, social, and physical well-being of family caregivers. Previous research has revealed that caregivers of cancer patients report negative effects on their own health such as anxiety, depression, fatigue, hopelessness, fear, guilt, regret, sleep problems, social isolation, and burnout.3Y5 It has been stated that patients with cancer and their family caregivers experience similar levels of depression. However, caregivers were significantly more anxious than the patients.6 Highly stressed family caregivers were found to be at increased risk of depression and health problems and to have increased mortality rates.7 Family caregivers who provide care for cancer patients may have to cope with a variety of physical, social, and economic problems during the caregiving process.8 Hopelessness is also characterized by persistently negative feelings and expectations about the future, as well as loss of motivation. A sense of hopelessness seems to lead to increasingly negative evaluations of new situations and less effective coping strategies; thus, the perception is that one will not accomplish anything meaningful.9,10 To date, very little research has investigated the relationship between coping and hopelessness. Thus, this study was aimed at assessing levels of hopelessness and caregiver coping strategies among family caregivers of oncology patients and examining the relationship between hopelessness and coping strategies among family caregivers.
The Conceptual Framework The conceptual framework guiding this study was Lazarus and Folkman’s11 theory of stress and coping. According to this theory, individuals use coping as a primary mechanism to adapt to their illness, which neutralizes the threatening situation effectively. Lazarus and Folkman proposed 2 modes of coping strategies used by individuals when they encounter stressful situations: problemfocused coping and emotion-focused coping. Problem-focused coping is an effort to control the stressful situation by altering the original source of the stress through changing behaviors or environmental conditions, whereas emotion-focused coping is an effort to control stress-related emotions by avoiding the stressful situation or reconstructing the context cognitively.11,12 The conceptualization of coping has recently been expanded to include coping efforts that serve an interpersonal regulation function. This function has been termed relationship-focused coping and refers to modes of coping aimed at managing, regulating, or preserving relationships during stressful periods.13
Hopelessness and Coping Strategies of Family Caregivers
Hope is a dynamic force that empowers the individual for adaptation to the future. It enables the individual to take an interest in their life and their future and to find meaning in life. Hope supports the positive approach and well-being and helps people maintain their relationships with others.14,15 It enables the individual to be oriented toward the future, to set goals, to make choices, to take decisions, and to be active. Herth14 stated that the most important feature of hope is that it gives confidence to the individual to make life changes.16 Hope has an important role in developing the coping powers of the family caregivers who assume the care of the individuals diagnosed with cancer. Hopelessness can be subdivided into 3 dimensions: an affective dimension (lack of hope), a motivational dimension (giving up), and a cognitive dimension (lack of future expectations).17 Hopelessness is also characterized by persistently negative feelings and expectations about the future as well as loss of motivation. A sense of hopelessness seems to lead to increasingly negative evaluations of new situations and less effective coping strategies; thus, the perception is that one will not accomplish anything meaningful. Assessment of hopelessness is also of critical importance in diseases with intensive clinical treatment such as cancer, because hopelessness is a basic element of a depressive disorder and a predictor of suicidal tendencies.9,10
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Relations Among Variables
A key psychosocial resource among family caregivers to manage and deal with their caregiving experience is hope.18Y20 The experience of hope in the family caregivers of individuals suffering from chronic diseases such as cancer was described in a metaanalysis conducted by Duggleby et al.21 This analysis included 14 studies, all of which emphasized the importance of hope for family caregivers irrespective of age, relationship, or setting. It was found that hope was a dynamic experience of possibilities within uncertainty. Furthermore, the extent of this uncertainty experienced by caregivers to achieve their hopes shaped the ways or processes that family caregivers would undergo to strengthen their hopes. Transitional shifting from a difficult present to a positive future constituted one of the main themes.16,21 Research conducted among family caregivers of patients in palliative care revealed lower hope levels in family caregivers when compared with the patients themselves, but younger family caregivers had higher levels of hope.22 Other research examining the meaning of hope for family caregivers of terminally ill patients indicated that general hope levels did not differ by variables including age, sex, employment, financial situation, education level, or length of caregiving time.14 More research is needed to understand the relationship between hopelessness and various demographic characteristics of family caregivers. Cancer NursingTM, Vol. 38, No. 4, 2015
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Objectives of the Study Specific study questions were as follows: 1. Which coping strategy, either problem-focused coping or emotion-focused coping, is used more frequently by family caregivers of oncology patients? 2. What is the relationship between hopelessness and the coping strategies of family caregivers? 3. What is the relationship between family caregivers’ sociodemographic variables and their coping strategies, and hopelessness?’’
n
Methods
Research Design and Sample This cross-sectional, descriptive correlational design study was aimed at examining the relationship between levels of hopelessness and coping strategies among family caregivers of patients diagnosed with cancer. It was carried out in the adult oncology unit and outpatient radiation oncology units of a university hospital in the Western region of Turkey. The research sample was composed of 110 people who were relatives of inpatients in the oncology unit and those of patients having outpatient treatment in the radiation oncology unit. The inclusion criteria were (a) being 18 years or older, (b) being a relative to the patient (spouse, son/daughter, parent, brother/sister, or others), (c) having been informed about the patient’s status and disease, (d) taking an active role in patient care, and (e) participating voluntarily in the study.
for optimistic approach, 0.67 for helpless approach, 0.67 for submissive approach, and 0.70 for seeking social support approach. The reliability and validity study of the Beck Hopelessness Scale was conducted in Turkey by Durak.24 The highest score that can be obtained from the scale is 20. An increased total score demonstrates that the feeling of hopelessness is increased in the individual.24 The Cronbach’s " value of the Beck Hopelessness Scale in this study was calculated as .72.
Data Analysis Data were analyzed by computer using the SPSS 11.5 program (SPSS Inc, Chicago, Illinois). Descriptive statistics (number, percentage, and average) were used to determine family caregivers’ demographic characteristics. The relationship between hopelessness and coping strategies was examined with Pearson correlations. Differences between demographic characteristics, mean scores of coping strategies, and hopelessness scores were analyzed by t test statistic, 1-way analysis of variance, and by using the Tukey honestly significant difference test in the further analyses.
Ethical Considerations Written approvals to conduct the research were received from the Tulay Aktas¸ Oncology Hospital of the Medicine Faculty of Ege University and from Izmir Ataturk Education and Research Hospital, and verbal and written informed consent was obtained from all the family caregivers who were willing to take part in the study. All questionnaires were completed by the face-to-face interview method.
Results
Measurements
n
Research data were collected via an Individual Identification Form, the Coping Stress Strategies Scale, and the Beck Hopelessness Scale by the researcher in face-to-face interviews. The individual identification form, which includes sociodemographic features and disease-related information of the patient’s relatives, was developed by the researcher. The validity and reliability study of the Coping Stress Strategies Scale, which was adapted into Turkish from the Ways of Coping Inventory Scale developed by Folkman and Lazarus,11 was carried out by Sahin and Durak.23 This scale has 2 dimensions that may be termed ‘‘effective approaches to problems’’ and ‘‘ineffective approaches to emotions.’’ These 2 dimensions are reflected in 5 subdimensions, which include ‘‘self-confident approach (7 questions),’’ ‘‘optimistic approach (5 questions),’’ ‘‘helpless approach (8 questions),’’ ‘‘submissive approach (6 questions),’’ and ‘‘seeking social support approach (4 questions).’’ Each item is scored from 0 to 3, where 0 = almost none, 1 = a little, 2 = much, and 3 = very much. Scores are calculated separately for each subdimension, and hence an overall score is not calculated. Increase in the total score for each approach is evaluated to mean that the individual uses that coping style much more than the others. We calculated the internal consistency coefficients of the tool and found the following values: 0.66 for self-confident approach, 0.68
Sample Characteristics The average age of study participants was 43.13 (SD, 12.65) years; 23.6% were spouses, and 33.6% stated they were a relative to the patient (eg, brother or sister, cousin, uncle or aunt, etc). The majority of family caregivers were female (67.3%) and married (76.4%) (Table 1).
Coping Strategies and Hopelessness of Family Caregivers The mean score of the helpless approaches, one of the emotionfocused coping strategies, was higher than the others (mean, 13.37 [SD, 2.7]). The lowest mean score was found in the optimistic approaches, which constituted one of the problem-focused coping strategies (mean, 7.25 [SD, 1.8]). Table 2 shows the range of scores and the mean score of each factor. The mean score of hopelessness was found to be 8.57 (SD, 2.4). Significant correlations were found between hopelessness and coping strategies. There was a positive correlation between hopelessness and helpless approaches, which constitute one of the emotionfocused coping strategies (r = 0.254, P G .01) (Table 3). The mean
E30 n Cancer NursingTM, Vol. 38, No. 4, 2015 Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.
Tokem et al
Table 1 & Characteristics of Family Caregivers
Table 2 & Coping Strategies Used by
(n = 110)
Characteristics
n
Family Caregivers
%
Gender Female 74 67.3 Male 36 32.7 Age, mean (SD), y 43.13 (12.65) Marital status Married 84 76.4 Single 15 13.6 Divorced/separated 11 10.0 Educational level Nonliterate 7 6.4 Primary school 52 47.3 Secondary school 19 17.3 High school 19 17.3 University 13 11.8 Income level Low 61 55.5 Moderate 46 41.8 High 3 2.7 Relationship to patient Spouse 26 23.6 Parent 12 10.9 Daughter/son 25 22.7 Relative 37 33.6 Other person (friends, neighbors, etc) 10 9.1 Duration of caregiving, mo 1Y11 65 59.1 12Y23 23 20.9 24Y35 6 5.5 936 16 14.5 Care support from other family members Present 93 84.5 Absent 17 15.5 Caregivers’ perceiving their health in the last 2 wk Good 72 65.5 Bad 22 20.0 Uncertain 16 14.5
score of the helpless approaches was observed to increase with an increase in the mean score of hopelessness. There was a negative correlation between hopelessness and problem-focused coping strategies (optimistic approach and seeking social support) (r = j0.484, P G .01; r = j0.190, P G .05) (Table 3). The mean score of the problem-focused coping strategies increased with a decrease in the mean score of hopelessness.
Ways of Coping With Stress (n = 110) Seeking social support approaches Optimistic approachesa Submissive approachesb Helpless approachesb Self-confident approachesa a
Mean (SD) a
9.40 7.25 10.68 13.37 12.11
The relationships among mean scores of subdimensions of coping strategies and demographic variables were examined by 1-way analysis of variance. The scores of the emotion-focused coping strategies were significantly related to education and the duration of care-
Hopelessness and Coping Strategies of Family Caregivers
6 1 4 7 3
11 11 14 23 18
Problem-focused coping. Emotion-focused coping.
b
giving. However, the scores of the problem-focused coping strategies were significantly related to education. The scores of the emotion-focused coping strategies were not significantly related to income level and care support from other family members. However, the scores of the problem-focused coping strategies were not significantly related to income level, relationship to the patient, or duration of caregiving (Table 4). We found a statistically significant relationship between the relationship to the patient and helpless approaches, one of the emotion-focused coping strategies (P G .05). A statistically significant relationship was also observed between care support from other family members and seeking social support approaches, which was one of the problem-focused coping strategies (P G .05) (Table 4). A statistically significant relationship was also found between mean scores of hopelessness and education level (P = .008) and income (P = .004) of caregivers (P G .05) (Table 4).
n
Discussion
According to the results of our study, the most frequently applied strategy was the helpless approach, which is one of the emotionfocused coping strategies, whereas the least used coping strategy was the optimistic approach, a problem-focused coping strategy. This means that caregiving families mostly adopt an emotional attitude toward their problems related to the caregiving process and feel helpless. Considering that cancer is a devastating illness that cannot be resolved solely by individual appraisal and efforts,
Table 3 & Correlation Between Ways of Coping With Stress and Hopelessness
Hopelessness Ways of Coping With Stress
Relationships Between Sociodemographic Variables and Coping Strategies and Hopelessness
(1.16) (1.87) (2.05) (2.76) (2.51)
Min Max
Seeking social support approaches Optimistic approachesa Submissive approachesb Helpless approachesb Self-confident approachesa
a
r
P
-0.190 -0.484 0.048 0.254 0.179
.004 .005 .615 .007 .062
Bold values are statistically significant at P G .05. a Problem-focused coping. b Emotion-focused coping.
Cancer NursingTM, Vol. 38, No. 4, 2015
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Table 4 & Distributions of Mean Scores of Subgroups of Coping Strategies and Hopelessness According to Demographic Variables of Caregivers
Gender Female (n = 74) Male (n = 36) P Marital status Married (n = 84) Single (n = 15) Widowed (n = 11) P Educational level Nonliterate (n = 7) Primary school (n = 52) Secondary school (n = 19) High school (n = 19) University (n = 13) P Income level Low (n = 61) Moderate (n = 46) High (n = 3) P Relationship to patient Spouse (n = 26) Parent (n = 12) Daughter/son (n = 25) Relative (n = 37) Other person (friends, etc) (n = 10) P Duration of caregiving, mo 1Y11 (n = 65) 12Y23 (n = 23) 24Y35 (n = 6) 936 (n = 16) P Care support from other family members Present Absent P
Self-confident Approachesa
Optimistic Approachesa
Submissive Approachesb
Hopelessness Scores
7.81 (1.20) 7.39 (1.34) .099
7.81 (1.20) 12.42 (3.24) .576
7.81 (1.20) 12.72 (2.79) .086
7.81 (1.20) 10.72 (2.24) .887
7.81 (1.20) 7.14 (1.84) .654
6.92 (3.91) 8.44 (3.79) .055
7.68 (1.21) 7.20 (1.52) 8.27 (1.01) .379
12.27 (2.18) 11.40 (4.01) 11.91 (2.43) .123
7.68 (1.21) 14.40 (3.40) 12.73 (2.00) .086
7.68 (1.21) 9.93 (3.15) 10.27 (1.95) .540
7.68 (1.21) 8.13 (2.20) 5.27 (2.05) .042c
7.60 (3.85) 7.20 (3.84) 6.36 (4.74) .060
7.86 (0.69) 7.62 (1.21) 7.42 (1.39) 8.00 (1.33) 7.69 (1.44) .041c
13.29 (2.06) 13.04 (2.38) 11.95 (2.72) 11.32 (2.39) 10.00 (3.08) .035c
11.29 (2.43) 13.31 (2.41) 13.42 (3.93) 13.32 (2.43) 14.77 (2.28) .084
11.57 (1.62) 11.00 (1.60) 11.11 (1.52) 9.53 (2.32) 10.00 (3.32) .030c
5.14 (2.19) 6.98 (1.78) 7.58 (1.50) 7.47 (1.87) 8.69 (1.44) .020c
10.00 (3.61) 8.31 (4.02) 6.32 (3.68) 6.95 (3.55) 4.77 (2.83) .008c
7.54 (1.27) 7.87 (1.24) 7.33 (1.15) .086
12.34 (2.82) 11.89 (2.07) 11.00 (2.00) .607
13.08 (2.79) 13.39 (2.31) 19.00 (3.61) .261
10.74 (2.20) 10.72 (1.82) 9.00 (2.65) .488
6.85 (2.04) 7.70 (1.55) 8.67 (0.58) .450
8.49 (3.87) 6.15 (3.70) 5.00 (1.00) .004c
7.77 7.92 7.52 7.57 7.90
12.61 13.25 11.28 12.14 11.50
13.58 12.58 13.52 13.35 13.50
10.73 11.67 9.36 11.14 11.00
6.92 6.58 7.48 7.35 8.00
8.04 8.42 6.56 7.62 6.00
(1.31) (0.90) (1.36) (1.34) (0.99)
.418
Seeking Social Helpless Support Approachesa Approachesb
(2.07) (1.48) (3.18) (2.66) (1.35)
.464
(3.25) (2.31) (2.50) (2.75) (2.99)
.549
(1.69) (1.15) (2.22) (2.02) (2.31)
.007c
(1.92) (2.68) (1.69) (1.58) (2.05)
.385
(3.78) (4.25) (3.32) (4.15) (4.40)
.776
7.45 (1.29) 7.96 (0.98) 8.00 (0.63) 8.06 (1.53) .281
12.35 (2.91) 12.30 (1.55) 11.17 (2.99) 11.25 (1.29) .083
13.18 (3.13) 12.83 (2.04) 14.67 (2.73) 14.44 (1.67) .223
10.78 (2.18) 10.96 (1.94) 9.33 (1.97) 10.38 (1.67) .011c
6.95 (2.04) 7.48 (1.70) 7.83 (1.94) 7.96 (1.06) .007c
8.02 (3.90) 7.17 (3.19) 5.33 (1.51) 6.13 (5.12) .407
7.60 (1.25) 8.13 (2.20) .151
12.05 (2.51) 12.50 (2.58) .949
13.06 (2.45) 15.19 (3.78) .000c
10.77 (2.09) 10.19 (1.83) .070
7.27 (1.75) 7.19 (2.54) .088
6.88 (5.30) 7.51 (3.66) .000c
a
Problem-focused coping. Emotion-focused coping. c P e .05. b
more frequent use of emotion-focused coping strategies by caregivers with cancer may be justifiable.11 Similarly, Papastavrou et al25 detected that, in general, emotion-focused coping strategies were used in the caregiving families. However, Kim26 indicated that caregivers more frequently applied problem-focused coping strategies. Family caregivers need to be integrated in the patient care, and their coping abilities (both emotion-focused and problemfocused) need to be empowered. Their abilities to cope with caregiver burden need to be reinforced through appropriate strategies offered at the institutional level that target personal coping by family caregivers as well as patients.
Coping strategies may be an important factor influencing hopelessness. To our knowledge, this is the first study to examine the relationship between hopelessness and caregiver coping strategies among Turkish family caregivers of patients diagnosed with cancer. A negative relationship was found between the hopelessness and seeking social support approach and the optimistic approach, which are problem-focused strategies. However, a positive relationship was detected between hopelessness and helpless, which is one of the emotional coping strategies. In other words, as hopelessness levels of the caregivers increase, they become less optimistic and seek less social support, and in turn, they become
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more helpless. This result supports the hypothesis that when family caregivers seek social support and adopt a more optimistic attitude, their level of hopelessness is decreased. All of the studies suggest that hope is an effective and positive tool for facilitating coping and for quality of life.18,19 In a quantitative study, Chapman and Pepler20 found positive correlations between hope and constructive coping in a self-selected sample, of which 33 of 61 family members were caregivers. In a study conducted by Lohne et al16 on families of patients with advanced-stage cancer, a significant relationship was found between the low level of hope of family caregivers and increased stress levels experienced by them. This result shows parallelism with the findings of our study. McMillan and Small7 detected that symptoms observed in family caregivers and their caregiving duties may be alleviated with interventions based on effective coping strategies. Van Laarhoven et al17 determined that the symptoms and hopelessness levels of individuals may be reduced by using effective coping strategies, and in this manner, their life qualities and functional situations may also be improved. Family members were encouraged to find a positive meaning in the illness together, which relied on their ability to maintain hope and optimism about the future.25,27 In our study, the score of hopelessness decreased as education levels of the caregivers increased. Also, as the education levels of caregiving families decreased, they were found to use emotionfocused coping strategies much more frequently. Likewise, Tan and Karabulutlu28 detected that individuals with higher education levels displayed more effective coping strategies. Ben-Zur et al29 and Brinson and Brunk30 also found out that individuals with high education levels could obtain better resources to find solutions to the problems and ensure effective coping through effective information and help. In our study, the scores of hopelessness of individuals who were assisted by another family member during caregiving were lower. Some studies have indicated the value of a supporting individual to a caregiver. For instance, a family member or friend can provide sporadic relief from caregiving duties as well as psychological support to both the patient and the caregiver.7,31 In some studies, caregivers reported feeling reassured when they had a source of support and received assistance, including information and financial, emotional, and practical support.12 Therefore, healthcare professionals should encourage caregivers to request and receive assistance from family, friends, and formal caregivers.32 A statistically significant relationship was also observed between care support from other family members and seeking social support approaches, one of the problem-focused coping strategies. Support and assistance from family members are beneficial in helping the patient cope with stress resulting from the disease and its treatment. Based on these results, social support is a major coping strategy for caregivers. According to previous studies, social support has been found to be the most important coping strategy and resource.25,33 There was a significant relationship between the use of emotionfocused coping strategies by the caregiving families and the duration of care. In the first several years of the caregiving process, caregiving families reported more helpless approaches. Family caregivers of cancer patients receive little preparation, information, or support to carry out their caregiving role. They are often expected to navigate through an increasingly complex and frag-
Hopelessness and Coping Strategies of Family Caregivers
mented healthcare system on their own and to find whatever help that may be available. Family caregivers need to assume an excessive number of duties when they take on the household or family responsibilities of the patients in addition to their own duties.3 Thus, caregiving families should be prepared by nurses who are specialized in providing care concerning the points related to the caregiving process including comfort, physical care, emotional and social support, and information. Preparing the caregiving families for their roles and enabling them to use the support systems are of paramount importance for them to cope with the problems encountered in the caregiving process and to develop effective coping strategies to solve such problems. Caregiving is labor intensive, with approximately a quarter of those caring for cancer patients spending in excess of 40 hours a week providing these services to family or friends. The level of care required by the care recipient is a major factor that influences the caregiver’s life and affects his/her health. Caregivers of cancer patients providing higher levels of support are more likely to report negative outcomes, less likely to be effective partners in the patient’s care, and more likely to postpone their own healthcare needs.34 They provide extraordinary and uncompensated care that is physically, emotionally, socially, and financially demanding and can result in the neglect of their own needs. The burdens of family caregiving include time and logistics, physical tasks, financial costs, emotional burdens, mental health, and other health risks.35 Whereas hopelessness levels of caregiver families were not affected by gender, marital status, relationship/closeness to the patient, or duration of care, they were found to be influenced by the education level, economic status, and care support of another family member. Herth14 reported that hope level was not affected by gender or profession. Tan and Karabulutlu28 determined that marital status did not affect the hopelessness level. However Mystakidou et al36 found that family status proved to be the strongest predictor of caregivers’ feelings of hopelessness, with caregivers of married patients experiencing more hopelessness. In our research, scores of hopelessness were found to be lower among caregivers in better economic situations. Likewise, Yun et al2 detected a strong relationship between insufficient economic resources and the life quality of the caregiver. The financial resources of families and the hopelessness levels of caregivers are closely associated. Financial support may increase the hope levels of caregiving families.
n
Conclusion
Caregiving families became less optimistic over time and experienced more despair and perceived less social support. In line with these results, we recommend that nurses in this field intervene to help caregiving families use problem-focused coping approaches.
References 1. Covinsky KE, Goldman L, Cook EF, et al. The impact of serious illness on patients’ families. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. JAMA. 1994; 272:1839Y1844.
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2. Yun YH, Rhee YS, Kang IO, et al. Economic burdens and quality of life of family caregivers of cancer patients. Oncology. 2005;68:107Y114. 3. Northouse LL, Katapodi M, Song L, Zhang L, Mood DW. Interventions with family caregivers of cancer patients: meta-analysis of randomized trials. CA Cancer J Clin. 2010;60(5):317Y339. 4. Lobchuk MM, Degner LF, Chateau D, Hewitt D. Promoting enhanced patient and family caregiver congruence on lung cancer symptom experiences. Oncol Nurs Forum. 2006;3;33(2):273Y282. 5. Lobchuk MM, Vorauer JD. Family caregiver perspective-taking and accuracy in estimating cancer patient symptom experiences. Soc Sci Med. 2003; 57(12):2379Y2384. 6. Hacialioglu N, Ozer N, Karabulutlu EY, Erdem N, Erci B. The quality of life of family caregivers of cancer patients in the East of Turkey. Eur J Oncol Nurs. 2010;14:211Y217. 7. McMillan SC, Small BJ. Using the COPE intervention for family caregivers to improve symptoms of hospice home care patients: a clinical trial. Oncol Nurs Forum. 2007;34(2):313Y321. 8. Osse BHP, Vernooij-Dassen MJFJ, Schade E, Grol RPTM. Problems experienced by the informal caregivers of cancer patients and their needs for support. Cancer Nurs. 2006;29(5):378Y388. 9. Mystakidou K, Tsilika E, Parpa E, et al. Illness-related hopelessness in advanced cancer: influence of anxiety, depression, and preparatory grief. Arch Psychiatr Nurs. 2009;23(2):138Y147. 10. Pehlivan S, Ovayolu O, Ovayolu N, Sevinc A, Camci C. Relationship between hopelessness, loneliness, and perceived social support from family in Turkish patients with cancer. Support Care Cancer. 2012;20:733Y739. 11. Lazarus RS, Folkman S. Stress, Appraisal and Coping. New York: Springer; 1984. 12. Tan M. Social support and coping in Turkish patients with cancer. Cancer Nurs. 2007;30(6):498Y504. 13. O’Brien TB, DeLongis A. The interactional context of problem-emotion, and relationship-focused coping: the role of the big five personality factors. J Pers. 1996;64:4:775Y813. 14. Herth K. Abbreviated instrument to measure hope: development and psychometric evaluation. J Adv Nurs. 1992;17:1251Y1259. 15. McClement SE, Chochinov HM. Hope in advanced cancer patients. Eur J Cancer. 2008;44(8):1169Y1174. 16. Lohne V, Miaskowski C, Rustøen T. The relationship between hope and caregiver strain in family caregivers of patients with advanced cancer. Cancer Nurs. 2011:00(0):1Y7. 17. Van Laarhoven HWM, Schilderman J, Bleijenberg G, et al. Coping, quality of life, depression, and hopelessness in cancer patients in a curative and palliative, end-of-life care setting. Cancer Nurs. 2011;34(4):302Y314. 18. Borneman T, Stahl C, Ferrell BR, Smith D. The concept of hope in family caregivers of patients at home. J Hosp Palliat Nurs. 2002;4(1):21Y33. 19. Herth K. Hope in the family caregiver of terminally ill people. J Adv Nurs. 1993;18:538Y548.
20. Chapman KJ, Pepler C. Coping, hope, and anticipatory grief in family members in palliative home care. Cancer Nurs. 1998;21(4):226Y234. 21. Duggleby W, Holtslander L, Kylma J, Duncan V, Hammond C, Williams A. Metasynthesis of the hope experience of family caregivers of persons with chronic illness. Qual Health Res. 2010;20(2):148Y158. 22. Benzein EG, Berg AC. The level of and relation between hope, hopelessness and fatigue inpatients and family members in palliative care. Palliat Med. 2005;19(3):234Y240. 23. S¸ahin HN, Durak A. Stresle bas¸a c¸Nkma tarzlarN o¨lc¸eg˘i: u¨niversite o¨g˘rencileri ic¸in uyarlanmasN [A brief of coping styles inventory for university students]. Tu¨rk Psikol Derg (Turk J Psychol). 1995;34:56Y73. 24. Durak A. Beck umutsuzluk o¨lc¸eg˘i (BUO) gec¸erlik ve gu¨venirlik c¸alNs¸masN (The validity and reliability of the Beck Hopelessness Scale). Tu¨rk Psikol Derg (Turk J Psychol). 1994;9:1Y11. 25. Papastavrou E, Charalambous A, Tsangari H. How do informal caregivers of patients with cancer cope: a descriptive study of the coping strategies employed. Eur J Oncol Nurs. 2012;16(3):258Y263. 26. Kim HS. The comparison of the stress and coping methods of cancer patients and their caregivers. Taehan Kanho Hakhoe Chi. 2003;33(5):538Y543. 27. Northfield S, Nebauer M. The caregiving journey for family members of relatives with cancer: how do they cope? Clin J Oncol Nurs. 2010;14(5): 567Y577. 28. Tan M, Karabulutlu E. Social support and hopelessness in Turkish patients with cancer. Cancer Nurs. 2005;28(3):236Y240. 29. Ben-Zur H, Gilbar O, Lev S. Coping with breast cancer: patient, spouse, and dyad models. Psychosom Med. 2001;63:32Y39. 30. Brinson SV, Brunk Q. Hospice family caregivers: an experience in coping. Hosp J. 2000;5(3):1Y12. 31. Duggleby W, Wright K, Williams A, Degner L, Cammer A, Holtslander L. Developing a living with hope program for caregivers of family members with advanced cancer. J Palliat Care. 2007;23(1):24Y31. 32. Given B, Wyatt G, Given C, et al. Burden and depression among caregivers of patients with cancer at the end of life. Oncol Nurs Forum. 2004;31(6): 1105Y1117. 33. Williams SW, Williams CS, Zimmerman S, Munn J, Dobbs D, Sloane DP. Emotional and physical health of informal caregivers of residents at the end of life: the role of social support. J Gerontol Ser B Psychol Sci Soc Sci. 2008; 63:171Y183. 34. Bevans MF, Sternberg EM. Caregiving burden, stress, and health effects among family caregivers of adult cancer patients. JAMA. 2012;307(4): 398Y403. 35. Blumand K, Sherman DW. Understanding the experience of caregivers: a focus on transitions. Semin Oncol Nurs. 2010;26(4):243Y258. 36. Mystakidou K, Tsilika E, Parpa E, Galanos A, Vlahos L. Caregivers of advanced cancer patients; feelings of hopelessness and depression. Cancer Nurs. 2007;30(5):412Y418.
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