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See discussions, stats, and author profiles for this publication at: https://www.researchgate.net/publication/314552876 Caregiving burden among relatives of cancer patients in Vietnamese national oncology hospital Article · January 2015 CITATIONS READS 0 431 2 authors, including: Ly Thuy Nguyen Queensland University of Technology 7 PUBLICATIONS   12 CITATIONS    SEE PROFILE Some of the authors of this publication are also working on these related projects: A Psychoeducational Intervention for Symptom Cluster Management among Cancer Patients View project All content following this page was uploaded by Ly Thuy Nguyen on 24 October 2017. The user has requested enhancement of the downloaded file. VIETNAM JOURNAL OF MEDICINE AND PHARAMCY CAREGIVING BURDEN AMONG RELATIVES OF CANCER PATIENTS IN VIETNAMESE NATIONAL ONCOLOGY HOSPITAL Ly Nguyen Thuy, Trang Ta Ngoc Dan Department of Nursing and Midwifery, Hanoi Medical University, Hanoi, Vietnam Correspondence Ly Nguyen Thuy Department of Nursing and Midwifery, Hanoi Medical University, Hanoi, Vietnam, No1 Ton That Tung Street, Hanoi, Vietnam Email: [email protected] ABSTRACT Family involvement has significant influences on decision-making processes, the receiving and sharing of information, and the provision of physical and emotional support for patients. This role commonly causes a substantial burden and caregivers often experience negative psychological, behavioral, and physiological effects on their daily lives and well-being. Caring for people with cancer can have significant impacts on caregivers as well as caregivers’ outcomes, which in turn can have negative impacts on the people being cared for. However, their burden of care does not attract appropriate attention in the Vietnamese health care system. Objectives To describe the caregiving burden among family caregivers of cancer patients and to explore the factors associated with the levels of caregiving burden among relatives of patients with cancer. Methods One-hundred and seven family caregivers of oncology patients in a Vietnamese National Oncology Hospital participated in the cross-sectional study by completing available questionnaires including the Zarit Burden Interview (ZBI), Activities of Daily Living (ADL) and Instrumental Activities of Daily Living (IADL). Results The average ZBI score was 48.9 ± 13.7, in which 72% of participants reported high caregiving burden levels and 28% of them experienced mild and moderate levels. Higher burden was reported in older caregivers (r=0.21, p=0.03), female caregivers (t=-3.51, p<0.001), caregivers who had no other support in caring (t=-2.78, p<0.01), and caregivers spent longer hours caring at hospital (r=0.40, p<0.01), as well as at VJMP 8(2)-2015 1 VIETNAM JOURNAL OF MEDICINE AND PHARAMCY home (r=0.46, p<0.01). Patient’s spouse reported higher burden than patient’s offspring (F=4.33, p<0.01). Regarding patients’ background factors, male patients (t=2.29, p<0.02) and patients who were breadwinners (t=3.13, p=0.02), diagnosed with cancer for more than 2 months (F=4.26, p=0.01) and undergone radiotherapy (t=2.02, p=0.05) or surgery therapy (t=2.17, p=0.03) experienced greater burden than the others. Importantly, the study found that the less independent patients were, the higher burden of care that caregivers would perceive (p<0.05). Conclusions The study results provided evidence concerning the high caregiving burden levels among relatives of cancer patients within Vietnamese cultural contexts. Caregivers’ and patients’ background factors were significantly associated with different levels of burden that caregivers perceived. This study provided an important foundation for future development of evidence-based interventions to support caregivers of cancer patients in Vietnam. Keywords Caregiving burden, cancer caregiver, Vietnam VJMP 8(2)-2015 2 VIETNAM JOURNAL OF MEDICINE AND PHARAMCY BACKGROUND Cancer is a major public health problem in the world. This disease is one of the leading causes of death worldwide, accounting for 8.2 million deaths globally in 2008 [1]. In Vietnam, cancer has been considered as an emerging major health problem since the 1990s [2]. It is estimated that about 150.000 people are diagnosed with cancer each year in Vietnam and only 5% of them receive prompt treatments [3]. Cancer has been reported as an important contributor to the burden of death in Vietnam. The annual mortality due to cancer is 75.000, equal to 14% of the total deaths of the country [3]. In Vietnamese traditional culture, relatives of patients, especially family members, are immediate people who care for daily routines and personal activities of the patients. The care for cancer patients has complex requirements in different stages of the disease. Therefore, the family plays an important role to provide the high level of care needed for both physical and psychological care of cancer patients. However, various kinds of caring tasks put a heavy burden on family caregivers’ lives. This leads to the concern that the levels of burden on caregivers of cancer patients are greater than those of other diseases and thought to be similar to the caring demands for patients with dementia [4]. Evidence has shown that caring burden related to numerous factors may negatively influence caregivers in psychological, physical and social aspects of their lives [4]. To date, a considerable amount of literature has been published about caregiving burden among caregivers of cancer patients worldwide. However, much of the research up to now has been carried out to describe the nature of burden of care for professional caregivers. Little is known about the caregiving burden of family relatives of oncology patients. Moreover, care burden is and under-researched topic within the Vietnamese context and thus, questions has been raised about the level of burden as well as the associated factors. The study was conducted with two main objectives, to: 1. Describe the levels of caregiving burden among cancer patients’ relatives who provide care for oncology patients in a Vietnamese National Oncology hospital. 2. Explore the factors associated with the level of caregiving burden among relatives of cancer patients in a Vietnamese National Oncology hospital. VJMP 8(2)-2015 3 VIETNAM JOURNAL OF MEDICINE AND PHARAMCY METHODS Study population Inclusion criteria: (a) be family members of cancer patients in the Medical Department of Oncology, Vietnamese National Oncology Hospital from September 2014 to October 2014, (b) provide assistance and offer care for patients without payments, (c) voluntarily participate in the study. Exclusion criteria: difficulties in communication. Methods Study design: a descriptive cross-sectional study applied the technique of face-toface interview by questionnaire. Samples and sampling A convenience sampling method was used to recruit participants who met the inclusion criteria. The sample size was calculated according to the formula provided by Lwanga and Lemeshow [5]: In which n: sample size; 1- α/2: confidence level with α= 0.05, Z= 1.96; P: assuming percentage of relatives with moderate or higher burden of caregiving at 0.5; d: absolute precision required; d=0.1 and n=97. An additional 10 participants (10%) were recruited for a total sample size of 107 people. Research Instruments Questionnaires included 3 sections. Part 1: to determine the background factors of caregivers and patients: demographic characteristics (20 items). Part 2: to determine the level of caregiving burden: Zarit Burden Interview- ZBI (22 items). The items are worded subjectively, focusing on the affective response of the caregiver. Each question is scored on a 5-point scale ranging from - never to nearly always present. Total scores range from 0 (low burden) to 88 (high burden). If ZBI total score of <21: “little or no burden”; 21 to 40: “mild to moderate burden”; 41 to 60: “moderate to severe burden” and a score >61: “severe burden” [6]. Part 3: to determine the level of patient’s independence: Activities of Daily Living-ADL (6 items) and Instrumental Activities of Daily Living (IADL). The higher ADL and IADL score indicated the higher level of patient’s independence. These tools in Vietnamese versions were validated VJMP 8(2)-2015 4 VIETNAM JOURNAL OF MEDICINE AND PHARAMCY and employed in the previous study conducted among a Vietnamese population [7]. Therefore, the instruments were considered appropriate to use in this study in the Vietnamese context. The internal consistency of these instruments were measured in this study with Cronbach’s Alpha for ZBI, ADL, IADL were 0.845; 0.8 and 0.803, respectively. Data analysis Firstly, frequencies and percentages were calculated for each of the variables. Then bivariate analysis (students T test for 2 groups or ANOVA, analysis of variance for more than 2 groups of independent variables, and Pearson’s correlation for continuous independent variables) was used to explore the associations between background characteristics and total score of ZBI. The level of significance for all analyses was set at less than 0.05. Ethical considerations This study had approval from the research committee of Hanoi Medical University. Before inclusion, the purposes of the research and benefits of the participants were presented in a cover letter attached to the questionnaire. Written informed consent was gained from all participants who took part in the study. Participants were informed that they could withdraw from this research without comment or penalty. RESULTS Caregivers VJMP 8(2)-2015 5 VIETNAM JOURNAL OF MEDICINE AND PHARAMCY Table 1. Background factors of caregivers (categorical variables) Variables (n=107) Male Married Education levels High school or less College/ Immediate level University or higher Occupation Farmer/ worker Government staff Business Other Living with patient Having other people support in caring Types of patient-caregiver relationship Spouse Children Parent Other Frequencies 60 87 % 56.1 81.3 73 16 18 68.2 15.0 16.8 60 15 12 20 78 55 56.1 14.0 11.2 18.7 72.9 51.4 54 37 4 12 50.5 34.6 3.7 11.2 Table 1 shows the background factors (categorical variables) of caregivers. Among 107 respondents, more than half of them were male (56.1%) and patient’s spouse (50.5%). Table 2. Background factors of caregivers (continuous variables) Variables (n=107) Caring time; (hours/week) In the hospital At home Family’s average income (million Vietnam dong) Number of financial dependent people Average age (years) Mean (SD) Min-Max 124.1(63.0) 51.8 (66.5) 1-168 0-168 7.8 (11.8) 0.3-70 1.4 (1.2) 0-5 42.5 (13.6) 20-71 Table 2 demonstrates the background factors (continuous variables) of caregivers. The average of time caring for patients at hospital was 124.1 (63.0) and at home was 51.8 (66.5 VJMP 8(2)-2015 6 VIETNAM JOURNAL OF MEDICINE AND PHARAMCY Table 3. Background factors of patients Variables % Frequencies Male The treatment therapies has been used Chemotherapy Radiotherapy Surgical Types of cancer Reproductive system Gastrointestinal Respiratory system Other Be the main income of caregiver’s family Disease duration (months) < 2 months 2-6 months 6months-5 years (60 months) > 5 years Variables Average age(years) Patient’s independent level ADL (possible score: 0-6) IADL (possible score: 0-8) 55 51.4 95 53 50 88.8 49.5 46.7 40 37 21 9 44 37.4 34.4 19.6 8.5 41.1 22 41 34 10 Mean (SD) 52.0 (10.6) 20.6 38.3 31.8 9.3 Min-max 24-69 5.2 (1.6) 5.15 (1.6) 0-6 0-8 The background factors of patients are illustrated in Table 3. The number of male patients made up the larger proportion (51.4%) and the average age of patients in this study was 52.0 years old (SD=10.6). Of participants, 58.9% had been the main income contributors. Percentage of patients who have been treated by chemotherapy, ratio therapy and surgery were 88.8%, 49.5% and 46.7%, respectively. Burden category Little or no burden Mild to moderate burden 0% 17% Average total ZBI score: 48.9±13.7 Possible score: 0-88 28% Min-max: 22-85 55% Figure 1. Caregiving burden’ level among caregivers VJMP 8(2)-2015 7 VIETNAM JOURNAL OF MEDICINE AND PHARAMCY Figure 1 demonstrates the score of Zarit Burden Interview (ZBI). The average score of ZBI of caretakers was 48.9 (SD=13.7), ranging from 22 to 85. This score was indicated as “moderate to severe” level of high level of burden. Specifically, none of the participants reported little or no burden. The majority of caregivers experienced high level burden including 55% for “moderate to severe burden” and 17% for “severe burden”. Table 4. Associations between total ZBI scores and categorical variables of caregiver’s characteristics Factors Mean (SD) Gender Male 45.0 (12.0) Female 53.9 (14.1) Marital status Singer 46.4 (11.0) Married 49.4 (14.2) Education High school or less 49.6 (14.3) College/ Immediate 50.7 (11.9) University or higher 44.2 (12.1) Occupation Farmer or worker 51.7 (14.0) Government staff 46.5 (11.9) Business 42.6 (11.8) Other 46.6 (13.6) Co-resident Yes 50.2 (13.5) No 45.2 (13.6) Other support Yes 45.3 (10.1) No 52.6 (15.9) Types of patient-caregiver relationship Spouse 53.1 (13.1) Children 43.1 (9.3) Parent 48.0 (23.9) Other 47.5 (18.3) 95%CI Lower upper t/F p 42.0 49.9 48.2 58.3 t=-3.51 0.00** 41.3 46.5 51.3 52.7 t=-0.90 0.37 46.3 44.3 38.2 52.9 57.1 50.2 F=1.12 0.35 48.07 39.9 35.1 46.3 55.3 53.1 50.1 51.5 47.3 40.4 53.6 50.1 t=1.69 0.09 42.9 48.2 48.1 56.9 t=-2.78 0.01* 49.6 40.1 9.9 35.9 56.7 46.3 86.1 59.1 F=1.49 F=4.33 0.20 0.01* Significant at * p<0.05, ** p< 0.01 Table 4 shows the relationships between ZBI scores and categorical variables of caregivers’ characteristics. A significant higher caregiving burden were found in female caregivers (53.9±14.1) rather than male caregivers (45.0±12.0); caregivers providing care alone (52.6±15.9) rather than those who received other support (45.3±10.1); and caregivers who were patient’s spouses (53.1±13.1) rather than VJMP 8(2)-2015 8 VIETNAM JOURNAL OF MEDICINE AND PHARAMCY patients’ children (43.1±9.3). Table 5. Associations between total ZBI scores and continuous variables of caregiver’s characteristics Factors Age Caring time In hospital At home Income Number of financial dependent people r p 0.40 0.46 -0.17 0.15 0.00** 0.00** 0.07 0.12 Significant at * p<0.05, ** p< 0.01 Table 5 indicates the significant positive correlations between burden and caregiver’s age (p=0.03) and caring time (p<0.001). Table 6.Associations between ZBI scores and categorical variable of patients’ characteristics Mean ±SD Factor Gender Male Female Chemotherapy Yes No Radio therapy 95%CI Lower Upper 51.9 (15.0) 46.0 (11.6) 42.0 49.8 48.2 49.8 49.2 (14.2) 45.8 (8.8) 46.2 40.7 Yes 51.5 (12.1) No Surgery Yes No Main income Yes No Types of cancer Reproductive Gastrointestinal Respiratory system Other Disease duration <2 months 2-6 months 6months-5 years >5 years t/F p t=2.29 0.02* 52.1 51.4 t=0.82 0.41 48.4 54.9 t=2.02 0.05* 46.2 (14.7) 42.4 50.4 45.9 (11.2) 51.5 (15.1) 42.7 47.5 48.9 55.4 t=-2.17 0.03* 53.9 (15.3) 45.3 (11.3) 49.6 42.7 58.7 48.3 t=3.13 0.02* 44.3 (11.1) 51.7 (15.7) 52.7 (13.2) 46.6(13.8) 40.7 46.4 46.7 41.0 47.8 56.9 58.7 52.0 F=2.2 0.09 41.6 (12.9) 53.2 (15.3) 49.7 (11.6) 44.3 (6.7) 35.8 48.4 45.7 39.5 47.3 58.0 53.8 49.1 F= 4.26 0.007** Significant at * p<0.05, ** p< 0.01 VJMP 8(2)-2015 9 VIETNAM JOURNAL OF MEDICINE AND PHARAMCY Table 6 illustrates the relationships between ZBI scores and categorical variables of patients’ characteristics. Higher caregiving burden were found in: caregivers of female patients (53.9±14.1) than male patients (45.0±12.0); caregivers of patients who were main income contributors (45.3±10.1) rather than caregivers of patients who were not (45.3±11.3); caregivers of patients undergoing radiotherapy, and of patients undergoing surgery rather than relatives of patients without these interventions; caregivers of patients having disease less than 2 months (41.6±12.9) rather than those caring for patients diagnosed from 2 to 6 months (53.2±15.3). Table 7.Associations between ZBI scores and Active Daily Living (ADL) and Instrument Active Daily Living (IADL) Variables ADL IADL r -0.23 -0.35 p 0.02* 0.00** Significant at * p<0.05, ** p< 0.01 A significant negative correlation between ZBI score and patient’s independent level is reported in Table 7. DISCUSSION Characteristics of participants Caregivers: More than half of the caregivers were male (56.1%) with an average age of 42.5 ±13.6 years-old. The main occupations of caregivers in our study were farmers and employees; therefore, their relationships and social activities were narrower than a study population with varied occupations of other research [8,9]. More than a half of caregivers (68.3%) had education at an ordinary level (high school or less). The Majority of caregivers were patients’ spouses, thus, it is easy to understand that almost all of the participants were living with the patient in the same house. The average time that caregivers spent for caring in the hospital was 124.1 (SD=63) hours/ week, larger than the result of a study in the United States with 18.9 hours/ week [8]. Similarly, the average caring time in the family was 51.8 (SD=66.5) hours/ week, higher than the result of a study in Vietnam in 2006 on the terminally ill, which was 10 hours / week [10]. Patients: The average age of patients was 52 years, with an average disease duration of 19.6 months. The patients who had been diagnosed with cancer for 2-6 months made up the highest proportion. This study was conducted in the Medical Department of Oncology, which may have resulted in a high percentage of patients VJMP 8(2)-2015 10 VIETNAM JOURNAL OF MEDICINE AND PHARAMCY (88.8%) treated by chemotherapy. The level of caregiving burden The average caregiving burden score among caregivers in this study is considered higher compared with research on relatives of dementia patients in Brazil (31.4 ± 16.0) [11] and in Vietnam (29.30 ± 13.58) [12]. In Vietnam, the family plays an integral role in the delivery of health care, in that family members provide for basic physical needs of patients, including hygiene, nutrition and hydration. Therefore, it is reasonable as none of participants in this study reported little or no burden. Almost all of the caregivers experienced high levels of burden, including 55% for moderate to severe burden and 17% for severe burden. The associations between caregiving burden and caregiver’s characteristics Our study illustrated that female care providers had higher levels of burden and depression than male caregivers. This is supported by the findings of other studies conducted in America in 1992 [13] and in Vietnam in 2014 [7]. Women are more likely to experience major depression related to greater life pressures than men [14]. Moreover, in this study, the average age was 44.9, which is in the premenopausal period for women. Therefore, female care providers become more susceptible to the burden for caring. Unsurprisingly, this study indicated that the older caregivers were the greater burden they reported. This may be due to the fact that older care providers are more likely to be in a reduced physical state and have restricted social and financial resources, compared to younger caregivers. These disadvantages combined with the risks of chronic conditions will become a big challenge to caring. The previous study showed that caregivers with chronic diseases reported a poorer quality of life and experienced a higher burden of care than healthy caregivers [9]. Moreover, having other people supporting in caring indicated that caregivers might experience less total burden. It is generally expected that caring time will be reduced when more than one person is taking care of the patient. This may decrease the pressure on caring responsibilities and obligations for the patient's relatives. Importantly, caring tasks greatly influenced patient/spouse relationships, social roles and time to care for themselves. The findings were supported by previous studies worldwide [15,16] and in Vietnam [12], which reported that spouse caregivers expressed higher degree of role strain than others. Spouses play an important role as the primary caregivers [17] as they support the patients both emotionally and VJMP 8(2)-2015 11 VIETNAM JOURNAL OF MEDICINE AND PHARAMCY physically while filling all or most of the roles that the patients had previously played. The main burden, therefore, falling on the spouse, is perceived as heavier. Especially, the study showed that the burden of care and caring time were positively correlated with each other. If they were spending too much time caring for others, caregivers may not have had sufficient time to meet their own needs, leading to decreased health status [18]. The associations between caregiving burden and patient’s characteristics This study indicated that in the families in which the patient works as the main source of income, caregivers could report higher levels of burden. As the illness will reduce the working capacity of patients, along with increased health service expenses, which can lead to a decrease of family income and financial imbalances, this will have a profound impact on the economic status of the family, and also put tremendous pressure on caregivers. Moreover, the study showed that caregivers of patients with 2 to 6-month disease duration reported a higher burden than caregivers of patients with less than 2 months disease duration. Evidence has shown that, at the period from 2 to 6 months after diagnosis, patients experienced the side effects of treatments, such as headache, nausea and dizziness [19]. Greater severity of the patient's symptoms and behavioral disturbances result in a greater “burden” to caregivers (usually rated by the caregivers) [20]. Importantly, in this study, there was a positive correlation between patient's independence levels and caregiver's burden. This result was similar to the previous results found in the study of Lowenstein in 2000 [21]. When patients are able to take part in the self-care activities, their caring demands will be reduced. This means caring for these patients requires less time than for more dependent patients, and thus minimizes caregiving burden among patient’s relatives. CONCLUSIONS The study results indicated high levels of caregiving burden among relatives of cancer patients. Therefore, there is a need to support these caregivers to reduce their burden of care, which was significantly influenced by background factors of caregivers (gender, age, spouses) and patients (main income, disease duration, independent levels) as well as caring time and support required for individual cancer patients. VJMP 8(2)-2015 12 VIETNAM JOURNAL OF MEDICINE AND PHARAMCY ACKNOWLEDGEMENTS The authors would like to express our heartfelt thanks to all cancer patients’ caregivers who participated in this study REFERENCES 1. Boyle P, Levin B. World cancer report 2008. IARC Press, International Agency for Research on Cancer 2008. 2. Ngoan lT, Lua NT, Hang L. Cancer mortality pattern in Viet Nam. Asian Pacific Journal of Cancer Prevention. APJCP 2006;8(4): 535-8. 3. Nguyen Hoang Long, Bales S, Pham Trong Thanh, et al. Improving quality of medical services. the Joint Annual Health Review 2012. 4. Kim Y, Schulz R. Family caregivers' strains comparative analysis of cancer caregiving with dementia, diabetes, and frail elderly caregiving. Journal of Aging and Health 2008;20(5):483-503. 5. Lwanga SK, Lemeshow S. Sample size determination in health studies: a practical manual. World Health Organization 1991. 6. Hébert R, Bravo G & Préville M. Reliability, validity and reference values of the Zarit Burden Interview for assessing informal caregivers of community-dwelling older persons with dementia. Canadian Journal on Aging/Revue Canadienne du vieillissement2000;19 (4): 494-507. 7. Trung Truong Quang. The quanlity of life and caregiving burden among caregivers of people with dementia in Hanoi, Bac Ninh and Hai Phong, Vietnam. Queensland University of Technology, Australia 2014. 8. Greenwald M. Caregiving in the US, 2009.Associates Washington Caregiving NAf, AARP 2009. 9. Grunfeld E, Coyle D, Whelan T, Clinch J, Reyno L, Earle CC, et al. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. Canadian Medical Association Journal 2004;170(12):1795-801. 10. Green K, Kinh L, Khue L. Palliative care in Vietnam: findings from a rapid situation analysis in five provinces. Hanoi: Vietnam. Ministry of Health 2006. 11. Fialho PPA, Koenig AM, dos Santos EL, Guimarães HC, Beato RG, Carvalho VJMP 8(2)-2015 13 VIETNAM JOURNAL OF MEDICINE AND PHARAMCY VA, et al. Dementia Caregiver burden in a Brazilian sample. Dementia & Neuropsychologia 2006; 132-5. 12. Ngoc NB. Quality of life of Alzheimer's disease patients, their caregiver and effectiveness asessment of some non-pharmacological intervention. Journal of Communication Disorders 2014. 13. Miller B, Cafasso L. Gender differences in caregiving: Fact or artifact?. The Gerontologist 1992;32(4):498-507. 14. Rosch PJ. Why Do Women Suffer More From Depression And Stress? 2014. 15. Gilbar O. Gender as a predictor of burden and psychological distress of elderly husbands and wives of cancer patients. Psycho‐Oncology 1999;8(4):287 16. Hoyert DL, Seltzer MM. Factors related to the well-being and life activities of family caregivers. Family Relations 1992;74-81. 17. Cantor MH. Strain among caregivers: A study of experience in the United States. The Gerontologist 1983. 18. Wang L, Chen W, Chang S, Wong O, Hong R, Wang R. Caregiving burden and associated factors among caregivers of terminally ill gastrointestinal cancer patients. Hu li za zhi The Journal of Nursing 2011;58(6):54-64. 19. Burstein HJ. Side effects of chemotherapy. Journal of Clinical Oncology 2000;18(3):693. 20. Perring C, Twigg J, Atkin K. Families caring for people diagnosed as mentally ill: The literature re-examined. HM Stationery Office 1990. 21. Lowenstein A, Gilbar O. The perception of caregiving burden on the part of elderly cancer patients, spouses and adult children. Families, Systems, & Health 2000;18(3):337. VJMP 8(2)-2015 14 View publication stats