This article was downloaded by: [New York University] On: 05 June 2015, At: 19:05 Publisher: Routledge Informa Ltd Registered in England and Wales Registered Number: 1072954 Registered office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK
Journal of Psychosocial Oncology Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wjpo20
The Burden of Care and Quality of Life of Caregivers of Leukemia and Lymphoma Patients Following Peripheric Stem Cell Transplantation a
Humeyra Deniz MSc, RN & Figen Inci PD, RN a
b
Erciyes University Hospital, Kayseri, Turkey
b
Nursing Department, Niğde Zubeyde Hanim Health School, Niğde University, Niğde, Turkey Accepted author version posted online: 11 Mar 2015.
Click for updates To cite this article: Humeyra Deniz MSc, RN & Figen Inci PD, RN (2015) The Burden of Care and Quality of Life of Caregivers of Leukemia and Lymphoma Patients Following Peripheric Stem Cell Transplantation, Journal of Psychosocial Oncology, 33:3, 250-262, DOI: 10.1080/07347332.2015.1019660 To link to this article: http://dx.doi.org/10.1080/07347332.2015.1019660
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms &
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Journal of Psychosocial Oncology, 33:250–262, 2015 Copyright © Taylor & Francis Group, LLC ISSN: 0734-7332 print / 1540-7586 online DOI: 10.1080/07347332.2015.1019660
The Burden of Care and Quality of Life of Caregivers of Leukemia and Lymphoma Patients Following Peripheric Stem Cell Transplantation HUMEYRA DENIZ, MSc, RN Downloaded by [New York University] at 19:05 05 June 2015
Erciyes University Hospital, Kayseri, Turkey
FIGEN INCI, PhD, RN Nursing Department, Ni˘gde Zubeyde Hanim Health School, Ni˘gde University, Ni˘gde, Turkey
This study was conducted to identify the burden of care and quality of life of caregivers of leukemia and lymphoma patients who had undergone peripheric stem cell transplantation. The sample consisted of 123 patient caregivers, all of whom were relatives. Data were collected using a survey, the Burden Interview, and the Caregiver Quality of Life Index Cancer Scale. Data evaluation was done using correlation analysis, Kruskall Wallis, and Mann-Whitney U tests. Factors that were significantly associated with quality of life and care burden perception included caring for an older patient, patient dependence for daily activities, and having low economic status. KEYWORDS peripheric stem cell transplantation, leukemia, lymphoma, caregiver, caring burden, quality of life
INTRODUCTION Leukemia and lymphoma are widely encountered illnesses that require treatment and care that can be extremely taxing on both patients and their relatives and caregivers. Treatment modalities for leukemia and lymphoma include chemotherapy, peripheric stem cell transplantation, surgery and radiotherapy. One or several of these modalities are used, depending on individual patient characteristics and the extent of the illness. Treatments are
Address correspondence to Figen Inci, PhD, RN, Nursing Department, Ni˘gde Zubeyde Hanim Health School, Ni˘gde University, Ni˘gde, Turkey. E-mail: [email protected] 250
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Quality of Life of Caregivers of Leukemia and Lymphoma Patients
251
aimed at extending life, controlling treatment-related side effects, and improving quality of life (Akdemir & Birol, 2004; Karadakovan & Aslan, 2010; ¨ Kızılcı, 1999; Ertem, Kaklım, Bulut, & Sevil, 2007; Ozdemir, S¸ahin, & K¨uc¸u¨ k, 2009). Peripheric stem cell transplantation and high-dose chemotherapy treatment may cause physical, psychosocial and mental problems for patients (Karadakovan & Aslan, 2010; Kapucu & Karaca, 2008). Patients may need support in carrying out activities of daily living after peripheric stem cell transplantation due to side effects and complications (Ertem, Kaklım, Bulut, & Sevil, 2007; Terakye, 2011). This support is met by the nurse during the clinical stage but after discharge it is usually met by family members (Flaskerud, Carter, & Lee, 2000). Caregivers of patients posttransplantation must cope not only with the responsibility of the patient’s physical and emotional well-being, but also with their own emotional and social problems created by the illness. Studies indicate that caregivers experience a deterioration in social interaction, change in entertainment activities, and difficulty maintaining effectiveness in their other life roles. The most frequent emotional problems caregivers face are fear, anxiety, and depressive feelings (Flaskerud, Carter, & Lee, 2000; Babao˘glu & Oz, 2003). Leukemia and lymphoma patients often experience relapses and require progressive and aggressive treatment methods, resulting in greater caregiving burden for family members (Terakye, 2011; Malak & Dicle, 2008). As the burden of caregiving increases, caregivers may feel restricted, desperate, and have difficulties meeting their own needs. Quality of life may decrease, resulting in psychological problems that may lead to neglect both of caregiver health and that of the patient (Ferhano˘glu, Bolaman, & Soysal, 2013; Dalgıc¸, Karada˘g, & Kuzu, 1998). This study has been undertaken to identify the caregiver burden and quality of life among caregivers for leukemia and lymphoma patients who underwent peripheric stem cell transplantation.
METHODS Participants Participants in this study consist of the caregivers of patients with leukemia and lymphoma who underwent peripheric stem cell transplantation in the past year at the Erciyes University Health Practice and Research Center S¸ahinur Dedeman Bone Marrow Transplantation and Stem Cell Treatment Center. Patients attend the center for their routine treatments, and care continues at their homes. Between April 2012–October 2013, 133 leukemia and lymphoma patients at the center had transplantation. To be included in the study, caregivers were required to meet the following criteria: (1) be a
252
H. Deniz and F. Inci
first-degree caregiver for a patients with peripheric stem cell transplantation whose care continued at home; (2) be a first-degree caregiver for a patient with peripheric stem cell transplantation who regularly accompanies the patient to clinic visits; (3) be over 18 years of age; (4) demonstrate cognitive competence; 5) demonstrate no communication problems. The number of caregivers who met the inclusion criteria and agreed to participate was 123.
Data Collection
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PATIENT
AND
CAREGIVER INFORMATION FORM
We collected patient information including age, gender, diagnosis, time since diagnosis, disease severity, and current disease status from surveys and medical records. Information about caregivers including caregiver age, gender, education, employment, socioeconomic status, number of children, and availability of psychosocial support was collected via survey. BURDEN INTERVIEW The Zarit burden interview (Zarit, Reever, & Bach-Peterson, 1980) is a widely used scale developed in 1980 to evaluate the stress experienced by caregivers of patients or older adults needing care. It can be filled in by the caregiver or an interviewer and it consists of 22 statements identifying the impact of care on the life of the individual. Statements are responded to using a 4point likert scale. The Turkish reliability and validity of the scale was carried out by I˙ nci (I˙ nci & Erdem, 2008) and its internal coefficient of consistency was determined to be 0.95, with a test-retest reliability of 0.71. The range of possible scores on the scale is 0–88 with higher point values indicating greater care burden. THE CAREGIVER QUALITY
OF
LIFE INDEX CANCER SCALE (CQOLC)
This scale was developed by Weitzner, Jacobsen, Wagner, Friedland, & Cox in 1999 to measure the quality of life of caregivers in terms of physical, emotional, family, and social function. Caregivers use a 5-point Likert scale to respond to 35 statements. Ten are related to burden, seven to the discomfort, seven to positive adaptation, and three to financial problems. The remaining eight statements are evaluated independently of these four subscales and contribute to the total score of the scale. Higher scores on each subscale, and on the total scale (which can range from 0 to 140) indicate better quality of life. Weitzner et al. investigated the reliability of the CQOLC among 180 caregivers and found an internal consistency coefficient of 0.91, and a test-retest correlation coefficient of .95 among 83 respondents. The Turkish reliability and validity of the scale was assessed by Karabu˘ga (2009), who
Quality of Life of Caregivers of Leukemia and Lymphoma Patients
253
found that the Cronbach’s alpha coefficient was 0.88 for the total scale, and varied between 0.60 and 0.89 for sub-dimensions. The test-retest correlation coefficient was of 0.96 for the overall scale and ranged from 0.84 and 0.95 for sub-dimensions.
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STATISTICAL ANALYSIS The statistical software program Statistical Packages of Social Science (SPSS) for Windows (version 11) was used. Descriptive statistics were used to characterize the sample with demographic and clinical characteristics. The relation between the scales has been analyzed with Spearman’s correlation analysis. The relations between the independent variables related to the characteristics of the patient and the caregiver and the scale scores have been evaluated using the Kruskall Wallis, Mann-Whitney U tests. This study was approved by the Erciyes University Clinical Research Ethical Commission and written consent was obtained from S¸ahinur Dedeman Bone Marrow Transplantation and Stem Cell Treatment Center, where the research was carried out. All study participants provided written and verbal informed consent.
RESULTS In the study sample, 61% of the patients were men, and 42.3% of the patients were between the ages of 26 and 35. The most common primary illness was Akut Myeloblastic Leukemia (54.5%), and 60.2% of the sample had a diagnosis duration between 13–60 months.% 73.2 of the patients have had their first transplantation,% 44.7 of them have come for 30 and more clinic visits. Ability to carry out daily life activities were reported by 48.8% of patients and 88.6% of patients stated that they had no other chronic illness. Most (69.9%) of caregivers were women and the average age 42.22 ± 11.68 years. Most caregivers were married (93.5%); 58.5% of these were housewives. The most common level of education was primary school (44.7%), 86.2% had children, and 76.4% reported that they were the sole caregiver. Most caregivers (69.9%) reported their income level as “medium.” About half (52%) of the caregivers were spouses. Lack of work difficulties was reported by 67.5% of caregivers, but 59.3% of caregivers reported difficulties with family relations. The score distribution of the caregivers’ quality of life and care burden scales is shown in Table 1. The average total of the quality of life scale of the people in the research was 37.54 ± 7.68, the burden subscale score average was 16.84 ± 11.58, the average discomfort subscale score was 39.67 ± 13.33, the average positive adaptation subscale score was 70.24 ± 13.81 and the
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H. Deniz and F. Inci
TABLE 1 The Score Distribution of the Caregivers’ Quality of Life Index Cancer and Burden Interview Scales x ± SS
Med (Min-Max)
37.54 ± 7.68
35.00 (22.00–58.00)
± ± ± ±
14.00 (3.50–49.00) 40.00 (15.00–85.00) 70.00 (10.00–100.00) 11.6 (0.00–105.00)
Scales
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The Caregiver Quality of Life Index Cancer (CQOLC) Scale Total scores Burden subscale Discomfort subscale Positive adaptation subscale Financial problems subscale Burden Interview Total scores
16.84 39.67 70.24 20.48
11.58 13.33 13.81 26.90
40.86 ± 6.60
40.00 (25.00–54.00)
average financial problems subscale score was 20.48 ± 26.90. The average total care burden scale score was 40.86 ± 6.60. Relationships between care burden scale scores and caregiver quality of life scale scores are shown in Table 2. We found no statistically significant relationship between the total care burden scale score and the caregiver quality of life total score, burden subscale score, discomfort subscale score and financial problems subscale score (all p > 0.05). We did, however, find a statistically significant relationship between the care burden scale score and the caregiver quality of life scale positive adaptation subscale score (p < 0.05). Care burden and caregiver quality of life scores according to patient characteristics are presented in Table 3. It has been identified that there is a statistically meaningful difference between the age of the patient and the discomfort subscale of the quality of life scale of the cancer patient caregivers (p < 0.05). At the advanced analyses it has been identified that this arises from the age group 18–25. Also statistically meaningful difference between the general state of the patients of the caregivers and the total score of the care burden scale (p < 0.05). As the patient dependency level increased, the care burden score increased. Higher care burden scale scores and lower quality of life scale scores were observed among caregivers of patients who had another chronic illness. TABLE 2 The Relationships Between Burden Interview Scale Scores and Caregivers’ Quality of Life Index Cancer (CQOLC) Scale Scores
Correlation Burden interview Total scores Spearman’s correlation(r) Sig(p)
CQOLC Total Scores
Burden Subscale
Discomfort Subscale
Positive Adaptation Subscale
Financial Problems Subscale
.139 .126
–.078 .389
–.152 .092
–.186 .039
–.081 .371
255
0.050
0.569
14.0 (3.5–49.0)
0.001
40.15 ± 6.40 40.0 (25.0–54.0) 37.97 ± 7.77 36.0 (22.0–58.0) 16.88 ± 11.29
Not to have
p
12.2 (3.5–45.5)
46.42 ± 5.61 48.0 (35.0–54.0) 34.21 ± 6.20 32.5 (25.0–48.0) 16.50 ± 14.09
0.459
Have
Another chronic illness
0.337
10.5 (3.5–45.5)
48.00 ± 5.54 48.0 (39.0–54.0) 39.50 ± 6.97 39.0 (32.0–48.0) 14.58 ± 15.40
Dependent
0.003
15.0 (3.5–49.0)
41.92 ± 5.76 41.0 (29.0–53.0) 36.49 ± 7.43 34.0 (22.0–56.0) 15.90 ± 10.76
Half independent
p
15.7 (3.5–45.0)
39.15 ± 6.84 38.0 (25.0–54.0) 38.35 ± 7.97 36.0 (23.0–58.0) 17.96 ± 12.02
0.245
Independent
General state
0.055
10.5 (3.5–49.0)
42.43 ± 7.13 42.5 (29.0–54.0) 34.36 ± 6.93 33.0 (22.0–58.0) 17.50 ± 12.76
42 years and over
0.293
17.5 (3.5–45.5)
39.63 ± 6.46 23.0 (25.0–50.0) 38.36 ± 9.19 36.0 (25.0–56.0) 20.07 ± 12.55
34–41 years
p
14.0 (3.5–45.5)
39.89 ± 6.52 38.0 (25.0–54.0) 38.00 ± 7.45 36.0 (28.0–54.0) 17.14 ± 11.34
26–33 years
Med (min–max)
Burden Subscale x ± SS 10.5 (3.5–38.5)
Med (min–max)
CQOLC Total Scores x ± SS 13.02 ± 9.23
Med (min–max)
41.84 ± 6.05 41.0 (33.0–53.0) 39.84 ± 6.98 40.0(31.0–100.0)
x ± SS
Burden Interview Total Scores
18–25 years
Age
Patient Characteristics Med (min–max)
x ± SS
Med (min–max)
Positive Adaptation Subscale
x ± SS
75.0 (30.0–95.0)
70.0 (50.0–95.0)
19.64 ± 29.63
21.66 ± 27.04
65.0 (45.0–85.0)
70.0 (10.–100.0)
0.212
0.240
0.0 (0.0–105.0) 5.83 (0.0–105.0)
11.6 (0.0–105.0)
11.6 (0.0–105.0)
5.00 ± 12.70
0.006
11.6 (0.0–105.0)
0.0 (0.0–46.6)
0.535
17.50 ± 19.17 11.6 (0.0.–105.0)
19.03 ± 28.80
40.00 ± 12.98 40.0 (15.0–75.0) 70.96 ± 13.68 70.0 (10.0–100.0) 22.47 ± 27.62
70.0 (30.0–80.0)
0.766
37.14 ± 16.13 35.0 (20.0–85.0) 64.64 ± 14.06
0.295
52.50 ± 21.85 50.0 (30.0–85.0) 66.66 ± 14.71
39.29 ± 11.89 40.0 (20.0–75.0) 69.47 ± 15.68
11.6(0.0–70.0) 11.6 (0.0–105.0)
0.683
38.75 ± 13.23 35.0 (15.0–75.5) 71.33 ± 11.82 70.0 (45.0–100.0) 22.16 ± 25.92
0.114
30.0 (20.0–55.0) 64.66 ± 16.76 65.0 (10.0–100.0) 18.66 ± 29.64
0.000
32.66 ± 7.95
38.68 ± 12.34 40.0 (15.0–60.0) 70.26 ± 15.67
39.28 ± 12.95 40.0 (15.0–70.0) 71.12 ± 10.66
Med (min–max)
Financial Problems Subscale
49.60 ± 14.57 50.0 (25.0–85.0) 75.20 ± 12.37 75.0 (55.0–100.0 21.00 ± 22.08
x ± SS
Discomfort Subscale
TABLE 3 Burden Interview and Caregivers’ Quality of Life Index Cancer Scale (CQOLC) Scores According to Patient Characteristics
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H. Deniz and F. Inci
Care burden and caregiver quality of life scores according to caregiver characteristics are presented in Table 4. Care burden scale score averages were statistically significantly different by gender (p < 0.05); men felt more of a burden of care than women. Care burden scores were higher among caregivers who described their economic status as “poor” compared with economic status as “better” and “medium” (p < 0.05) Further, those who described their economic status as “bad” had poorer quality of life scores in the sub dimension of disturbance (p < 0.05). Caregivers who provided care to their spouses reported greater care burden and lower quality of life than caregivers who provided care to their mothers (p < 0.05). Total caregiver burden among caregivers whose work lives are affected by caregiving was higher than among caregivers whose work lives were not affected (p < 0.05). Caregivers whose family lives were affected by their caregiving activities reported a higher total care burden and a lower quality of life score on the discomfort dimension than caregivers whose family lives were not affected by caregiving (p < 0.05)
DISCUSSION Caregivers of cancer patients can experience a sense of loss of control over their lives, especially when caregiving affects socializing, economic stability, and family relationships. Perceived burden of caregiving is often high among cancer caregivers, and they often report low quality of life. Peripheric stem cell transplantation is one of the common treatments for leukemia and lymphoma. The lengthy recovery period involved, possible complications from the procedure and the home treatment of patients after the procedure can cause considerable disruption to the lives of caregivers. Several previous studies of caregivers of patients have been conducted. Some of these studies found that caregivers perceived their care burden level as medium (As¸iret & Kapucu, 2012; Yıldırım, Engin, & Bas¸kaya, 2013; Tel, Demirkol, Kara, & Aydın, 2012; T¨urko˘glu, 2010), while other studies found lower perceived burdens of care (Longo, Fitch, Deber, & Williams, 2006; I˙ nci & Erdem, 2008; Sent¨urk, Yaylı, & Civelek, 2004). In the current study, the perception of caregiver burden was higher than what has been reported previously. This could be due to the fact that patients who receive peripheric stem cell transplantation have longer hospitalizations and home care durations, forcing greater disruption in the lives of caregivers. The caregivers assessed in this study reported very low quality of life. In similarly cancer patients studies conducted by Karabu˘ga (2009) and Hacıalio˘glu, Ozer, Yılmaz, Erdem, and Erci (2010) it was found that total mean quality of life score was higher. These differences in quality of life scores across studies might be explained by differences in diagnosis, treatment method and need for long-term care. Caregivers who must change their
257
p
x ± SS Med (min–max)
x ± SS Med (min–max)
x ± SS
Med (min–max)
0.557
0.804
0.759
0.0 (0.0–35.0)
0.476
0.0 (0.0–35.0) 0.398
8.33 ± 12.98
0.986
0.000
0.201
0.895
0.020
0.303
0.136
37.96 ± 5.26 38.0 (25.0–50.0) 38.64 ± 7.75 36.0 (27.3–56.0) 16.66 ± 10.96 14.0 (3.5–49.0) 42.40 ± 12.86 40.0 (20.0–85.0) 72.00 ± 10.64 75.0 (45.0–95.0) 24.73 ± 28.63 11.6 (0.0–105.0)
0.123
42.86 ± 6.72 43.0 (26.0–54.0) 36.79 ± 7.60 34.0 (22.0–58.0) 16.97 ± 12.06 14.0 (3.5–45.5) 37.80 ± 13.41 35.0 (15.0–75.0) 69.04 ± 15.58 70.0 (10.0–100.0) 17.57 ± 25.43 11.6 (0.0–105.0)
0.609
Affected
0.957
Not affected
0.752
39.60 ± 6.72 39.0 (25.0–54.0) 37.43 ± 7.76 35.0 (23.0–58.0) 17.33 ± 12.61 14.0 (3.5–49.0) 40.06 ± 13.64 40.0 (15.0–85.0) 69.33 ± 11.88 70.0 (30.0–100.0) 20.10 ± 26.04 11.6 (0.0–105.0)
Not affected
0.002
43.50 ± 5.56 44.0 (35.0–53.0) 37.77 ± 7.62 35.0 (22.0–55.0) 15.83 ± 9.14
Affected
14.0 (3.5–42.0) 38.87 ± 12.78 35.0 (15.0–75.0) 72.12 ± 17.16 75.0 (10.0–100.0) 21.29 ± 28.92 11.6 (0.0–105.0)
Journal of Psychosocial Oncology Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wjpo20
The Burden of Care and Quality of Life of Caregivers of Leukemia and Lymphoma Patients Following Peripheric Stem Cell Transplantation a
Humeyra Deniz MSc, RN & Figen Inci PD, RN a
b
Erciyes University Hospital, Kayseri, Turkey
b
Nursing Department, Niğde Zubeyde Hanim Health School, Niğde University, Niğde, Turkey Accepted author version posted online: 11 Mar 2015.
Click for updates To cite this article: Humeyra Deniz MSc, RN & Figen Inci PD, RN (2015) The Burden of Care and Quality of Life of Caregivers of Leukemia and Lymphoma Patients Following Peripheric Stem Cell Transplantation, Journal of Psychosocial Oncology, 33:3, 250-262, DOI: 10.1080/07347332.2015.1019660 To link to this article: http://dx.doi.org/10.1080/07347332.2015.1019660
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms &
Downloaded by [New York University] at 19:05 05 June 2015
Conditions of access and use can be found at http://www.tandfonline.com/page/termsand-conditions
Journal of Psychosocial Oncology, 33:250–262, 2015 Copyright © Taylor & Francis Group, LLC ISSN: 0734-7332 print / 1540-7586 online DOI: 10.1080/07347332.2015.1019660
The Burden of Care and Quality of Life of Caregivers of Leukemia and Lymphoma Patients Following Peripheric Stem Cell Transplantation HUMEYRA DENIZ, MSc, RN Downloaded by [New York University] at 19:05 05 June 2015
Erciyes University Hospital, Kayseri, Turkey
FIGEN INCI, PhD, RN Nursing Department, Ni˘gde Zubeyde Hanim Health School, Ni˘gde University, Ni˘gde, Turkey
This study was conducted to identify the burden of care and quality of life of caregivers of leukemia and lymphoma patients who had undergone peripheric stem cell transplantation. The sample consisted of 123 patient caregivers, all of whom were relatives. Data were collected using a survey, the Burden Interview, and the Caregiver Quality of Life Index Cancer Scale. Data evaluation was done using correlation analysis, Kruskall Wallis, and Mann-Whitney U tests. Factors that were significantly associated with quality of life and care burden perception included caring for an older patient, patient dependence for daily activities, and having low economic status. KEYWORDS peripheric stem cell transplantation, leukemia, lymphoma, caregiver, caring burden, quality of life
INTRODUCTION Leukemia and lymphoma are widely encountered illnesses that require treatment and care that can be extremely taxing on both patients and their relatives and caregivers. Treatment modalities for leukemia and lymphoma include chemotherapy, peripheric stem cell transplantation, surgery and radiotherapy. One or several of these modalities are used, depending on individual patient characteristics and the extent of the illness. Treatments are
Address correspondence to Figen Inci, PhD, RN, Nursing Department, Ni˘gde Zubeyde Hanim Health School, Ni˘gde University, Ni˘gde, Turkey. E-mail: [email protected] 250
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Quality of Life of Caregivers of Leukemia and Lymphoma Patients
251
aimed at extending life, controlling treatment-related side effects, and improving quality of life (Akdemir & Birol, 2004; Karadakovan & Aslan, 2010; ¨ Kızılcı, 1999; Ertem, Kaklım, Bulut, & Sevil, 2007; Ozdemir, S¸ahin, & K¨uc¸u¨ k, 2009). Peripheric stem cell transplantation and high-dose chemotherapy treatment may cause physical, psychosocial and mental problems for patients (Karadakovan & Aslan, 2010; Kapucu & Karaca, 2008). Patients may need support in carrying out activities of daily living after peripheric stem cell transplantation due to side effects and complications (Ertem, Kaklım, Bulut, & Sevil, 2007; Terakye, 2011). This support is met by the nurse during the clinical stage but after discharge it is usually met by family members (Flaskerud, Carter, & Lee, 2000). Caregivers of patients posttransplantation must cope not only with the responsibility of the patient’s physical and emotional well-being, but also with their own emotional and social problems created by the illness. Studies indicate that caregivers experience a deterioration in social interaction, change in entertainment activities, and difficulty maintaining effectiveness in their other life roles. The most frequent emotional problems caregivers face are fear, anxiety, and depressive feelings (Flaskerud, Carter, & Lee, 2000; Babao˘glu & Oz, 2003). Leukemia and lymphoma patients often experience relapses and require progressive and aggressive treatment methods, resulting in greater caregiving burden for family members (Terakye, 2011; Malak & Dicle, 2008). As the burden of caregiving increases, caregivers may feel restricted, desperate, and have difficulties meeting their own needs. Quality of life may decrease, resulting in psychological problems that may lead to neglect both of caregiver health and that of the patient (Ferhano˘glu, Bolaman, & Soysal, 2013; Dalgıc¸, Karada˘g, & Kuzu, 1998). This study has been undertaken to identify the caregiver burden and quality of life among caregivers for leukemia and lymphoma patients who underwent peripheric stem cell transplantation.
METHODS Participants Participants in this study consist of the caregivers of patients with leukemia and lymphoma who underwent peripheric stem cell transplantation in the past year at the Erciyes University Health Practice and Research Center S¸ahinur Dedeman Bone Marrow Transplantation and Stem Cell Treatment Center. Patients attend the center for their routine treatments, and care continues at their homes. Between April 2012–October 2013, 133 leukemia and lymphoma patients at the center had transplantation. To be included in the study, caregivers were required to meet the following criteria: (1) be a
252
H. Deniz and F. Inci
first-degree caregiver for a patients with peripheric stem cell transplantation whose care continued at home; (2) be a first-degree caregiver for a patient with peripheric stem cell transplantation who regularly accompanies the patient to clinic visits; (3) be over 18 years of age; (4) demonstrate cognitive competence; 5) demonstrate no communication problems. The number of caregivers who met the inclusion criteria and agreed to participate was 123.
Data Collection
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PATIENT
AND
CAREGIVER INFORMATION FORM
We collected patient information including age, gender, diagnosis, time since diagnosis, disease severity, and current disease status from surveys and medical records. Information about caregivers including caregiver age, gender, education, employment, socioeconomic status, number of children, and availability of psychosocial support was collected via survey. BURDEN INTERVIEW The Zarit burden interview (Zarit, Reever, & Bach-Peterson, 1980) is a widely used scale developed in 1980 to evaluate the stress experienced by caregivers of patients or older adults needing care. It can be filled in by the caregiver or an interviewer and it consists of 22 statements identifying the impact of care on the life of the individual. Statements are responded to using a 4point likert scale. The Turkish reliability and validity of the scale was carried out by I˙ nci (I˙ nci & Erdem, 2008) and its internal coefficient of consistency was determined to be 0.95, with a test-retest reliability of 0.71. The range of possible scores on the scale is 0–88 with higher point values indicating greater care burden. THE CAREGIVER QUALITY
OF
LIFE INDEX CANCER SCALE (CQOLC)
This scale was developed by Weitzner, Jacobsen, Wagner, Friedland, & Cox in 1999 to measure the quality of life of caregivers in terms of physical, emotional, family, and social function. Caregivers use a 5-point Likert scale to respond to 35 statements. Ten are related to burden, seven to the discomfort, seven to positive adaptation, and three to financial problems. The remaining eight statements are evaluated independently of these four subscales and contribute to the total score of the scale. Higher scores on each subscale, and on the total scale (which can range from 0 to 140) indicate better quality of life. Weitzner et al. investigated the reliability of the CQOLC among 180 caregivers and found an internal consistency coefficient of 0.91, and a test-retest correlation coefficient of .95 among 83 respondents. The Turkish reliability and validity of the scale was assessed by Karabu˘ga (2009), who
Quality of Life of Caregivers of Leukemia and Lymphoma Patients
253
found that the Cronbach’s alpha coefficient was 0.88 for the total scale, and varied between 0.60 and 0.89 for sub-dimensions. The test-retest correlation coefficient was of 0.96 for the overall scale and ranged from 0.84 and 0.95 for sub-dimensions.
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STATISTICAL ANALYSIS The statistical software program Statistical Packages of Social Science (SPSS) for Windows (version 11) was used. Descriptive statistics were used to characterize the sample with demographic and clinical characteristics. The relation between the scales has been analyzed with Spearman’s correlation analysis. The relations between the independent variables related to the characteristics of the patient and the caregiver and the scale scores have been evaluated using the Kruskall Wallis, Mann-Whitney U tests. This study was approved by the Erciyes University Clinical Research Ethical Commission and written consent was obtained from S¸ahinur Dedeman Bone Marrow Transplantation and Stem Cell Treatment Center, where the research was carried out. All study participants provided written and verbal informed consent.
RESULTS In the study sample, 61% of the patients were men, and 42.3% of the patients were between the ages of 26 and 35. The most common primary illness was Akut Myeloblastic Leukemia (54.5%), and 60.2% of the sample had a diagnosis duration between 13–60 months.% 73.2 of the patients have had their first transplantation,% 44.7 of them have come for 30 and more clinic visits. Ability to carry out daily life activities were reported by 48.8% of patients and 88.6% of patients stated that they had no other chronic illness. Most (69.9%) of caregivers were women and the average age 42.22 ± 11.68 years. Most caregivers were married (93.5%); 58.5% of these were housewives. The most common level of education was primary school (44.7%), 86.2% had children, and 76.4% reported that they were the sole caregiver. Most caregivers (69.9%) reported their income level as “medium.” About half (52%) of the caregivers were spouses. Lack of work difficulties was reported by 67.5% of caregivers, but 59.3% of caregivers reported difficulties with family relations. The score distribution of the caregivers’ quality of life and care burden scales is shown in Table 1. The average total of the quality of life scale of the people in the research was 37.54 ± 7.68, the burden subscale score average was 16.84 ± 11.58, the average discomfort subscale score was 39.67 ± 13.33, the average positive adaptation subscale score was 70.24 ± 13.81 and the
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H. Deniz and F. Inci
TABLE 1 The Score Distribution of the Caregivers’ Quality of Life Index Cancer and Burden Interview Scales x ± SS
Med (Min-Max)
37.54 ± 7.68
35.00 (22.00–58.00)
± ± ± ±
14.00 (3.50–49.00) 40.00 (15.00–85.00) 70.00 (10.00–100.00) 11.6 (0.00–105.00)
Scales
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The Caregiver Quality of Life Index Cancer (CQOLC) Scale Total scores Burden subscale Discomfort subscale Positive adaptation subscale Financial problems subscale Burden Interview Total scores
16.84 39.67 70.24 20.48
11.58 13.33 13.81 26.90
40.86 ± 6.60
40.00 (25.00–54.00)
average financial problems subscale score was 20.48 ± 26.90. The average total care burden scale score was 40.86 ± 6.60. Relationships between care burden scale scores and caregiver quality of life scale scores are shown in Table 2. We found no statistically significant relationship between the total care burden scale score and the caregiver quality of life total score, burden subscale score, discomfort subscale score and financial problems subscale score (all p > 0.05). We did, however, find a statistically significant relationship between the care burden scale score and the caregiver quality of life scale positive adaptation subscale score (p < 0.05). Care burden and caregiver quality of life scores according to patient characteristics are presented in Table 3. It has been identified that there is a statistically meaningful difference between the age of the patient and the discomfort subscale of the quality of life scale of the cancer patient caregivers (p < 0.05). At the advanced analyses it has been identified that this arises from the age group 18–25. Also statistically meaningful difference between the general state of the patients of the caregivers and the total score of the care burden scale (p < 0.05). As the patient dependency level increased, the care burden score increased. Higher care burden scale scores and lower quality of life scale scores were observed among caregivers of patients who had another chronic illness. TABLE 2 The Relationships Between Burden Interview Scale Scores and Caregivers’ Quality of Life Index Cancer (CQOLC) Scale Scores
Correlation Burden interview Total scores Spearman’s correlation(r) Sig(p)
CQOLC Total Scores
Burden Subscale
Discomfort Subscale
Positive Adaptation Subscale
Financial Problems Subscale
.139 .126
–.078 .389
–.152 .092
–.186 .039
–.081 .371
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0.050
0.569
14.0 (3.5–49.0)
0.001
40.15 ± 6.40 40.0 (25.0–54.0) 37.97 ± 7.77 36.0 (22.0–58.0) 16.88 ± 11.29
Not to have
p
12.2 (3.5–45.5)
46.42 ± 5.61 48.0 (35.0–54.0) 34.21 ± 6.20 32.5 (25.0–48.0) 16.50 ± 14.09
0.459
Have
Another chronic illness
0.337
10.5 (3.5–45.5)
48.00 ± 5.54 48.0 (39.0–54.0) 39.50 ± 6.97 39.0 (32.0–48.0) 14.58 ± 15.40
Dependent
0.003
15.0 (3.5–49.0)
41.92 ± 5.76 41.0 (29.0–53.0) 36.49 ± 7.43 34.0 (22.0–56.0) 15.90 ± 10.76
Half independent
p
15.7 (3.5–45.0)
39.15 ± 6.84 38.0 (25.0–54.0) 38.35 ± 7.97 36.0 (23.0–58.0) 17.96 ± 12.02
0.245
Independent
General state
0.055
10.5 (3.5–49.0)
42.43 ± 7.13 42.5 (29.0–54.0) 34.36 ± 6.93 33.0 (22.0–58.0) 17.50 ± 12.76
42 years and over
0.293
17.5 (3.5–45.5)
39.63 ± 6.46 23.0 (25.0–50.0) 38.36 ± 9.19 36.0 (25.0–56.0) 20.07 ± 12.55
34–41 years
p
14.0 (3.5–45.5)
39.89 ± 6.52 38.0 (25.0–54.0) 38.00 ± 7.45 36.0 (28.0–54.0) 17.14 ± 11.34
26–33 years
Med (min–max)
Burden Subscale x ± SS 10.5 (3.5–38.5)
Med (min–max)
CQOLC Total Scores x ± SS 13.02 ± 9.23
Med (min–max)
41.84 ± 6.05 41.0 (33.0–53.0) 39.84 ± 6.98 40.0(31.0–100.0)
x ± SS
Burden Interview Total Scores
18–25 years
Age
Patient Characteristics Med (min–max)
x ± SS
Med (min–max)
Positive Adaptation Subscale
x ± SS
75.0 (30.0–95.0)
70.0 (50.0–95.0)
19.64 ± 29.63
21.66 ± 27.04
65.0 (45.0–85.0)
70.0 (10.–100.0)
0.212
0.240
0.0 (0.0–105.0) 5.83 (0.0–105.0)
11.6 (0.0–105.0)
11.6 (0.0–105.0)
5.00 ± 12.70
0.006
11.6 (0.0–105.0)
0.0 (0.0–46.6)
0.535
17.50 ± 19.17 11.6 (0.0.–105.0)
19.03 ± 28.80
40.00 ± 12.98 40.0 (15.0–75.0) 70.96 ± 13.68 70.0 (10.0–100.0) 22.47 ± 27.62
70.0 (30.0–80.0)
0.766
37.14 ± 16.13 35.0 (20.0–85.0) 64.64 ± 14.06
0.295
52.50 ± 21.85 50.0 (30.0–85.0) 66.66 ± 14.71
39.29 ± 11.89 40.0 (20.0–75.0) 69.47 ± 15.68
11.6(0.0–70.0) 11.6 (0.0–105.0)
0.683
38.75 ± 13.23 35.0 (15.0–75.5) 71.33 ± 11.82 70.0 (45.0–100.0) 22.16 ± 25.92
0.114
30.0 (20.0–55.0) 64.66 ± 16.76 65.0 (10.0–100.0) 18.66 ± 29.64
0.000
32.66 ± 7.95
38.68 ± 12.34 40.0 (15.0–60.0) 70.26 ± 15.67
39.28 ± 12.95 40.0 (15.0–70.0) 71.12 ± 10.66
Med (min–max)
Financial Problems Subscale
49.60 ± 14.57 50.0 (25.0–85.0) 75.20 ± 12.37 75.0 (55.0–100.0 21.00 ± 22.08
x ± SS
Discomfort Subscale
TABLE 3 Burden Interview and Caregivers’ Quality of Life Index Cancer Scale (CQOLC) Scores According to Patient Characteristics
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H. Deniz and F. Inci
Care burden and caregiver quality of life scores according to caregiver characteristics are presented in Table 4. Care burden scale score averages were statistically significantly different by gender (p < 0.05); men felt more of a burden of care than women. Care burden scores were higher among caregivers who described their economic status as “poor” compared with economic status as “better” and “medium” (p < 0.05) Further, those who described their economic status as “bad” had poorer quality of life scores in the sub dimension of disturbance (p < 0.05). Caregivers who provided care to their spouses reported greater care burden and lower quality of life than caregivers who provided care to their mothers (p < 0.05). Total caregiver burden among caregivers whose work lives are affected by caregiving was higher than among caregivers whose work lives were not affected (p < 0.05). Caregivers whose family lives were affected by their caregiving activities reported a higher total care burden and a lower quality of life score on the discomfort dimension than caregivers whose family lives were not affected by caregiving (p < 0.05)
DISCUSSION Caregivers of cancer patients can experience a sense of loss of control over their lives, especially when caregiving affects socializing, economic stability, and family relationships. Perceived burden of caregiving is often high among cancer caregivers, and they often report low quality of life. Peripheric stem cell transplantation is one of the common treatments for leukemia and lymphoma. The lengthy recovery period involved, possible complications from the procedure and the home treatment of patients after the procedure can cause considerable disruption to the lives of caregivers. Several previous studies of caregivers of patients have been conducted. Some of these studies found that caregivers perceived their care burden level as medium (As¸iret & Kapucu, 2012; Yıldırım, Engin, & Bas¸kaya, 2013; Tel, Demirkol, Kara, & Aydın, 2012; T¨urko˘glu, 2010), while other studies found lower perceived burdens of care (Longo, Fitch, Deber, & Williams, 2006; I˙ nci & Erdem, 2008; Sent¨urk, Yaylı, & Civelek, 2004). In the current study, the perception of caregiver burden was higher than what has been reported previously. This could be due to the fact that patients who receive peripheric stem cell transplantation have longer hospitalizations and home care durations, forcing greater disruption in the lives of caregivers. The caregivers assessed in this study reported very low quality of life. In similarly cancer patients studies conducted by Karabu˘ga (2009) and Hacıalio˘glu, Ozer, Yılmaz, Erdem, and Erci (2010) it was found that total mean quality of life score was higher. These differences in quality of life scores across studies might be explained by differences in diagnosis, treatment method and need for long-term care. Caregivers who must change their
257
p
x ± SS Med (min–max)
x ± SS Med (min–max)
x ± SS
Med (min–max)
0.557
0.804
0.759
0.0 (0.0–35.0)
0.476
0.0 (0.0–35.0) 0.398
8.33 ± 12.98
0.986
0.000
0.201
0.895
0.020
0.303
0.136
37.96 ± 5.26 38.0 (25.0–50.0) 38.64 ± 7.75 36.0 (27.3–56.0) 16.66 ± 10.96 14.0 (3.5–49.0) 42.40 ± 12.86 40.0 (20.0–85.0) 72.00 ± 10.64 75.0 (45.0–95.0) 24.73 ± 28.63 11.6 (0.0–105.0)
0.123
42.86 ± 6.72 43.0 (26.0–54.0) 36.79 ± 7.60 34.0 (22.0–58.0) 16.97 ± 12.06 14.0 (3.5–45.5) 37.80 ± 13.41 35.0 (15.0–75.0) 69.04 ± 15.58 70.0 (10.0–100.0) 17.57 ± 25.43 11.6 (0.0–105.0)
0.609
Affected
0.957
Not affected
0.752
39.60 ± 6.72 39.0 (25.0–54.0) 37.43 ± 7.76 35.0 (23.0–58.0) 17.33 ± 12.61 14.0 (3.5–49.0) 40.06 ± 13.64 40.0 (15.0–85.0) 69.33 ± 11.88 70.0 (30.0–100.0) 20.10 ± 26.04 11.6 (0.0–105.0)
Not affected
0.002
43.50 ± 5.56 44.0 (35.0–53.0) 37.77 ± 7.62 35.0 (22.0–55.0) 15.83 ± 9.14
Affected
14.0 (3.5–42.0) 38.87 ± 12.78 35.0 (15.0–75.0) 72.12 ± 17.16 75.0 (10.0–100.0) 21.29 ± 28.92 11.6 (0.0–105.0)
