European Journal of Oncology Nursing 18 (2014) 372e377
Contents lists available at ScienceDirect
European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon
Caregiver burden among primary caregivers of patients undergoing peripheral blood stem cell transplantation: A cross sectional study Nur Akgul*, Leyla Ozdemir Hacettepe University, Faculty of Nursing, 06000 Sihhiye, Ankara, Turkey
a b s t r a c t Keywords: Hematopoietic stem cell transplantation Caregiver Caregiver burden Nursing
Purpose: This study aimed to identify caregiver burden and inﬂuencing factors on the burden in primary caregivers of peripheral blood stem cell transplantation patients within 2e12 months following transplant, indicating early recovery period after discharge. Method: This descriptive cross sectional study was carried out at hematopoietic stem cell transplantation outpatient units of three university hospitals in Turkey. A total of 55 patient and caregiver dyads were recruited and interviewed. The data were collected using questionnaires developed by the researchers and caregiver burden was measured with the Zarit Burden Interview. Results: The mean score of Zarit Burden Interview was 28.41 (SD ¼ 13.90). Patients’ symptoms including nausea and self depreciation feeling were related to greater caregiver burden. Self-depreciation was referred to feeling undervalued. The mean score of the tool was signiﬁcantly higher in caregivers who have not been educated beyond primary school and also caregivers who had lower income. Caregivers who supported their patients to fulﬁll physical needs and who did not receive help for meeting patients’ psychological needs had statistically more elevated levels of burden. Moreover, the extent of care giving activities undertaken was positively correlated with caregiver burden scores. While positive impact of the care giving process on family relations decreased caregiver burden; negative effect increased the burden. Conclusions: This study suggests that caregiver burden of primary caregivers caring for peripheral blood stem cell transplantation patients varies by education, income status, and the extent of care giving activities undertaken. Changes in family ties and relations due to care giving effected caregiver burden. Ó 2014 Elsevier Ltd. All rights reserved.
Introduction Hematopoietic stem cell transplantation (HSCT) is a long-term and uncertain treatment process with various and intense care needs. Recently, in order to reduce costs and long term hospitalization associated risks, patients are discharged in the early period following the HSCT. The literature indicates that early discharged patients experienced fewer complications and symptoms such as infection, nausea/vomiting and graft versus host disease (Svahn et al., 2002; Ferrara et al., 2004; Nicoleu et al., 2007). Shifting long term hospitalization to early discharge requires one caregiver, willing to participate in an intense training program, can psychologically and physically perform care giving activities, and should stay with the patient both in the hospital and home (Chow and Coyle, 2011). In Turkey, caregiver training includes adaptation to * Corresponding author. Tel.: þ90 312 324 2013/135, þ90 546 267 4497 (mobile); fax: þ90 312 3127085. E-mail address: [email protected]
(N. Akgul). http://dx.doi.org/10.1016/j.ejon.2014.03.013 1462-3889/Ó 2014 Elsevier Ltd. All rights reserved.
hospitalization, recognition and detection of complications, catheter care and actions to prevent opportunistic infections. The training does not include meeting the psychological needs of patients or caregivers. The detection and management of acute symptoms and complications requiring medical assistance, prevention of opportunist infections, providing physical and psychosocial support, increase the responsibility of the caregiver (Elredge et al., 2006; Wilson et al., 2009). Relevant research in the literature indicates that the presence of a caregiver during and after the HSCT period increases the disease free-survival time of the patient (Foster et al., 2013) and to have fewer physical and psychological problems (Rini et al., 2011). Although patients with HSCT live longer than past decades, they have ongoing and exhausting health care needs (Syrjala et al., 2004; CIBMTR, 2012). Caregivers can experience changes in family and professional life due to their increasing responsibilities related to caring for the HSCT patient. The fact that caregivers leave their social environment and have difﬁculty in fulﬁlling previous responsibilities combined with the intensity of the patient’s symptoms can create a
N. Akgul, L. Ozdemir / European Journal of Oncology Nursing 18 (2014) 372e377
risk for “caregiver burden” (Beattie and Lebel, 2011; Chow and Coyle, 2011). Foxall and Gaston-Johansson (1996) deﬁned the subjective dimension of caregiver burden as worthlessness, fear, stress, anger and guilt, and the objective aspect as ﬁnancial challenges, restriction in personal activity, changes in family process, and stress in familial relationships about HSCT. The research conducted on caregivers of patients with HSCT reports that caregivers have physical exhaustion and as the intensity of the patient’s symptoms increase, the degree of these feelings of exhaustion also increases (Zabora et al., 1992). The results of other studies in this ﬁeld indicate that caregivers have ﬁnancial problems within this period, undertake additional duties and responsibilities, have changes in domestic roles and relationships, experience stress at the same level as patients, and have less social support than do patients (Zabora et al.,1992; Boyle et al., 2000; Siston et al., 2001; Bishop et al., 2007). The research on caregiver burden related to HSCT mostly centers around the early recovery period before and after the discharge (Foxall and Gaston-Johansson, 1996; Gaston-Johansson et al., 2004; Elredge et al., 2006; Fife et al., 2009). Caregiver burden of primary caregivers providing care to patients at home following the early recovery period and the effect of socio-demographic variables on caregiver burden have not been sufﬁciently investigated. Moreover, most of the studies on informal caregivers have not included the criterion stipulating that only one and the same caregiver should provide care both at hospital and home (Foxall and GastonJohansson, 1996; Gaston-Johansson et al., 2004; Elredge et al., 2006; Bevans et al., 2010). In this context, there is a paucity of research that deﬁnes and examines strictly primary caregivers, detects the caregiver burden after the acute recovery period following the discharge, and correlates the caregiver burden with caregivers’ socio-demographic traits. Aim of the study This descriptive cross-sectional study aimed; to identify caregiver burden in primary caregivers of peripherally blood stem cell transplantation (PBSCT) patients within 2e 12 months following transplant
to investigate the correlation between patients’ characteristics including socio-demographic, disease, symptoms, treatment variables and caregiver burden to reveal the deﬁning characteristics of burden related to caregiver such as socio-demographic, physical and psychological changes due to care giving, the duration and extent of care giving activities. In the direction of the aim, the research questions were generated as follows: What is the caregiver burden of primary caregivers caring for PBCT patients within 2e12 months following transplant? Does caregiver burden change with socio-demographic and disease-treatment characteristics?
Method Design, population and sample This descriptive cross-sectional study was carried out in HSCT outpatient units of the three university hospitals in Turkey. The study population consisted of primary caregivers who accompanied the patient during hospitalization. Primary caregivers were informal caregivers, who were informed about the transplant process and responsible for care giving activities following discharge, who planned to stay at home with the patient after discharge, and who had primary responsibility for the physical and emotional care of the patient. The inclusion criteria for primary caregivers were as follows: caring for the patient who did not relapse and between 2 and 12 months following the transplant, being older than 18 years of age, being able to communicate in Turkish, not having mental conditions or any problems that may affect their communication, and being volunteered to participate in the research (Fig. 1). NCSS (Number Cruncher Statistical System) software was used to calculate the sample size. Accordingly, the calculation, based on 90% power, 5% margin of error and 0.467 effect size, revealed the
Fig. 1. Flow chart of data collection procedure.
N. Akgul, L. Ozdemir / European Journal of Oncology Nursing 18 (2014) 372e377
minimum sample size as 55. According to convenience sampling, the study was completed with 55 primary caregivers who were eligible for inclusion in the study. Measures and instruments Two different questionnaires were developed by the researchers based on the literature (Foxall and Gaston-Johansson, 1996; Boyle et al., 2000; Jones and Chapman, 2000; Siston et al., 2001; GastonJohansson et al., 2004; Elredge et al., 2006; Bishop et al., 2007; Fife et al., 2009). “The Patient Questionnaire” contains sociodemographics (e.g. age, gender, education level) and illnesstreatment characteristics (e.g. diagnosis, type of transplant, time since the transplant, length of hospital stay during the transplant, physical and psychological symptom intensity experienced by the recipient). The physical symptoms, including nausea, vomiting, fever, mucositis, fatigue, lack of appetite, diarrhea, constipation, skin changes, edema and pain, encountered following transplantation were identiﬁed according to the literature (Danaher et al., 2006; Bevans et al., 2008; Mosher et al., 2009) and these problems were aligned and classiﬁed as mild, moderate and high in the questionnaire. As to the patients’ expressions regarding the questions, the appropriate ﬁeld was marked by the researcher. A similar method was utilized for the post-transplantation psychological changes. Accordingly, the psychological changes such as fear, crying, self-depreciation, sleeplessness and hypersomnia were investigated by the researcher. Self-depreciation was referred to feeling undervalued. There is no tool directly measuring selfdepreciation in the literature. Self-depreciation feeling may be evaluated with the question of “how do you assess yourself comparing the others?” (Aydemir et al., 2000; Robins et al., 2007). Patients’ expressions related to self-depreciation were recorded in this study. “The Caregiver Questionnaire” includes sociodemographics (age, gender, education and employment status, household income and relationship to the patient) and care giving characteristics (e.g. spending time on care, undertaking care giving activities, informed status about care giving, and the availability of ﬁnancial, social, physical and psychological strains during care giving) that may affect caregiver burden. To determine the extent of care giving activities, all care giving activities including physical, ﬁnancial, transport, emotional needs of the patient and diseasetreatment related support were ranked with a multiple-choice question and each activity title was scored as 1 point and a total score was calculated using the sum of the activity titles. So as to evaluate the content validity of the questionnaires, two experts’ opinions were obtained and necessary corrections were made in the form according to their suggestions. In order to measure caregiver burden the “Zarit Burden Interview (ZBI)” was used. Although ZBI was constructed for the elderly, there have also been several published articles regarding burden of cancer caregivers using this interview (Goldstein et al., 2004; Grunfeld et al., 2004; Higginson and Gao, 2008; Papastavrou et al., 2009; Yusuf et al., 2011; Turkoglu and Kilic, 2012; Belgacem et al., 2013). The ZBI includes 22 items determining the impact of the care giving experience on each individual. Each item was rated on a 5 point Likert scale ranging from never (0) to nearly always (4). The researchers conducted validity and reliability tests of the Turkish version of ZBI, suggested to assess the interview as one-dimensional, and also a cut-off point was not recommended for the scale (Inci and Erdem, 2008). The assessment of the scale was performed considering the total score ranging from a minimum 0 points to a maximum 88 points. Items on the scale demonstrate social, emotional and ﬁnancial domains of the burden and greater scores indicate higher caregiver burden (Zarit and Zarit, 1990). The tool’s internal consistency coefﬁcient ranges between 0.87 and 0.94, and test-retest
reliability was 0.71 for Turkish society (Inci and Erdem, 2008). In this study, the internal consistency coefﬁcient was 0.87. Ethical considerations Ethical approval was obtained from Non-interventional Clinical Trials Ethics Committee of Hacettepe University. Data analysis Data analysis was performed with SPSS 17.0. Frequencies and percentages were used to deﬁne patient and primary caregivers’ descriptive characteristics. Parametric statistics were used to analyze group differences since the data distributed normally (Kolmogorov-Simirnov Z ¼ 1.235, p ¼ 0.095). The independent samples t test, one way ANOVA to compare groups and Pearson’s correlation for relations among quantitative variables were used. Signiﬁcance level of 0.05 for two tailed test was used for all analyses. Results Descriptive characteristics of patients and caregivers A total of 55 patient and caregiver dyads were recruited and interviewed. The mean age was 44.01 (SD ¼ 14.04) for caregivers and 42.58 (SD ¼ 14.34) for patients. While the ratio of male and female was approximately equal in patient group (52.7% vs. 47.3%), caregivers were predominantly female (69.1%). The greater part of both patients and caregivers were married (76.4% vs. 87.3%) and primary school educated (58.2% vs. 54.5%). The majority of the caregivers were patient’s spouses (56.4%) and had lower income compared to the expenditure (54.5%). Diagnoses of the patients included 54.5% leukemia, 30.9% multiple myeloma and 14.5% lymphoma. The most prevalent type of PBSCT was allogeneic (67.3%). Additionally, the mean duration of care giving was 6.81 (SD ¼ 3.58) hours per day and mean time period since transplantation was 5.75 (SD ¼ 3.23) months. The rate of positive caregiver statements related to care giving experience was 45.2% included building strong family relationships and improving family ties. The rate of negative statements was %75.7 such as the negative inﬂuence of the process on marital and family relationships including violence to children. Caregiver burden of the primary caregivers and inﬂuencing factors Patients characteristics and caregiver burden The mean level of burden that primary caregivers experienced was 28.41 (SD ¼ 13.90) with a range of 10e71. Most of the caregivers’ total burden scores compared to mean was below the mean burden (65.4%). When each item on the scale was examined, higher scores were found for “Do you feel you could do a better job in caring for your relative?” (58.2%); “Do you feel that your relative seems to expect you to take care of him/her, as if you were the only one he/she could depend on?” (41.8%); and “Do you feel your relative is dependent upon you?” (28.3%). There was no signiﬁcant difference between demographic and treatment characteristics of the patient, and the mean burden score (p > 0.05). Besides, except nausea and self-depreciation feeling, the mean caregiver burden and symptom experience of the patient revealed no statistical signiﬁcance (Table 1). The mean score of the tool was signiﬁcantly higher in caregivers who care for the patients with nausea and self-depreciation (p < 0.05). Although not shown in the table, there were no signiﬁcant correlations among amount
N. Akgul, L. Ozdemir / European Journal of Oncology Nursing 18 (2014) 372e377 Table 1 Comparison of caregiver burden means by selected patient characteristics. Frequency (n)
Determining variables Gender Male 29 30.96 14.67 Female 26 25.57 12.67 Marital Status Married 42 29.30 14.37 Single 13 25.53 12.35 Type of Transplant Autologous 18 26.16 14.64 Allogeneic 37 29.51 13.60 Re-hospitalization after discharge Yes 19 31.84 16.85 No 36 26.61 11.93 Post-transplant physical and psychological problems Nausea Yes 16 35.87 18.11 No 35 25.88 11.05 Vomiting Yes 11 34.36 16.33 No 40 27.55 13.49 Pain Yes 28 28.82 14.49 No 23 29.26 14.29 Fatigue Yes 42 30.66 14.91 No 9 21.33 7.07 Fear Yes 15 27.06 17.47 No 26 29.42 13.52 Self-depreciation Yes 5 44.60 18.55 No 36 26.33 13.15
p: 0.153 t: 1.449 p: 0.398 t: 0.852 p: 0.407 t: -0.875 p: 0.187 t: 1.336
p: 0.019* t: 2.432 p: 0.163 t: 1.417 p: 0.914 t: 0.108 p:0.074 t: 1.822 p: 0.632 t: 0.483 p: 0.008* t: 2.772
*p values showed as bold indicate signiﬁcance level