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Social Work in Health Care Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wshc20

Family Caregivers of Cancer Patients: Perceived Burden and Symptoms During the Early Phases of Cancer Treatment a

b

Una Stenberg MSW, PhD , Milada Cvancarova PhD , Mirjam Ekstedt bc

d

eb

RN, PhD , Mariann Olsson MSW, PhD & Cornelia Ruland RN, PhD a

Center for Shared Decision Making and Collaborative Care Research, and Section for Social Medicine, Department of Clinical Service, Division of Cancer Medicine, Surgery and Transplantation, Oslo University Hospital, Oslo, Norway b

Center for Shared Decision Making and Collaborative Care Research, Oslo University Hospital, Oslo, Norway c

Royal Institute of Technology, KTH, School of Technology and Health, Stockholm, Sweden d

Division of Social Work, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet and Stockholms Sjukhem, Stockholm, Sweden e

Department for Medicine, University of Oslo, Oslo, Norway Published online: 14 Mar 2014.

To cite this article: Una Stenberg MSW, PhD, Milada Cvancarova PhD, Mirjam Ekstedt RN, PhD, Mariann Olsson MSW, PhD & Cornelia Ruland RN, PhD (2014) Family Caregivers of Cancer Patients: Perceived Burden and Symptoms During the Early Phases of Cancer Treatment, Social Work in Health Care, 53:3, 289-309, DOI: 10.1080/00981389.2013.873518 To link to this article: http://dx.doi.org/10.1080/00981389.2013.873518

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Social Work in Health Care, 53:289–309, 2014 Copyright © Taylor & Francis Group, LLC ISSN: 0098-1389 print/1541-034X online DOI: 10.1080/00981389.2013.873518

Family Caregivers of Cancer Patients: Perceived Burden and Symptoms During the Early Phases of Cancer Treatment

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UNA STENBERG, MSW, PhD Center for Shared Decision Making and Collaborative Care Research, and Section for Social Medicine, Department of Clinical Service, Division of Cancer Medicine, Surgery and Transplantation, Oslo University Hospital, Oslo, Norway

MILADA CVANCAROVA, PhD Center for Shared Decision Making and Collaborative Care Research, Oslo University Hospital, Oslo, Norway

MIRJAM EKSTEDT, RN, PhD Center for Shared Decision Making and Collaborative Care Research, Oslo University Hospital, Oslo, Norway; Royal Institute of Technology, KTH, School of Technology and Health, Stockholm, Sweden

MARIANN OLSSON, MSW, PhD Division of Social Work, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet and Stockholms Sjukhem, Stockholm, Sweden

CORNELIA RULAND, RN, PhD Center for Shared Decision Making and Collaborative Care Research, Oslo University Hospital; Department for Medicine, University of Oslo, Oslo, Norway

This study investigated levels of symptoms, caregiver burden, and changes over time in 278 family caregivers (FC) of cancer patients. FCs experienced high levels of depressive symptoms and sleep disturbance, low levels of fatigue, and low to moderate levels of caregiver burden, yet these symptoms remained relatively stable over time. Being female and not being employed were factors associated with an increased risk of symptoms and caregiver burden. The understanding evolving from this study can enhance social- and health care professionals’ awareness of FCs’ challenging situation and the Received June 26, 2013; accepted December 4, 2013. Address correspondence to Una Stenberg, MSW, PhD, Forskningsveien 2b Postboks 4950 Nydalen, 0424 Oslo, Norway. E-mail: [email protected]

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potential impact this has on the FCs’ ability to provide care to the patient. KEYWORDS cancer patients, family caregivers, caregiver burden, depression, sleep disturbance, fatigue

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INTRODUCTION For patients being treated for cancer, family caregivers (FCs) are the primary source of social and emotional support. There is substantial evidence that FCs deal with many and complex symptoms and health problems during and after the patient’s treatment (Stenberg, Ruland, & Miaskowski, 2010). Moreover, hospital stays tend to become shorter, so patients must increasingly cope with this long-term illness at home. This, in turn, increases caregiver accountability, and makes the FC’s role as a source of support for the patient even more important. In addition, FCs often take great responsibility for daily care-giving and functioning in the family (Northfield & Nebauer, 2010). FCs also play an important role for society as a whole, as their efforts significantly lessen the demand on professional care (Fletcher, Dodd, Schumacher, & Miaskowski, 2008a). Severalstudies have reported a high prevalence of depression and psychological distress in FCs of cancer patients (Friethriksdottir et al., 2011). Fewer studies have assessed sleep disturbance and fatigue (Fletcher et al., 2008b). Furthermore, FCs take on many responsibilities and activities they are unprepared to handle, and several studies report moderate or higher levels of caregiver burden on FCs (Chen et al., 2009; Donnelly et al., 2008). However, only a few longitudinal studies have reported how the prevalence and severity of FCs’ depression, sleep disturbance, fatigue, or caregiver burden change over time. In the literature, depression is the symptom that is most frequently reported, also over time (Burridge, Barnett, & Clavarino, 2009; Fletcher et al., 2008a; Grunfeld et al., 2004). Because family care-giving has become an integral part of cancer care, it has become important to understand factors that affect caregiver burden. Characteristics of the FC that are generally associated with depression, sleep disturbance, fatigue, and with caregiver burden include age, gender, relation to the patient, and level of education (Given et al., 2004; Papastavrou, Charalambous, & Tsangari, 2009). No known study has yet evaluated how FCs’ depression, fatigue, and sleep disturbance are associated with perceived caregiver burden during the early phases of cancer treatment. Therefore, the aim of this study was to investigate the perceived levels of depression, sleep disturbance, fatigue, and caregiver burden over time of FCs of oncology patients who were to begin radiation therapy and chemotherapy. Furthermore, to investigate how demographic characteristics (gender, age,

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relation to the patient, level of education, employment status) were associated with FCs’ depression, sleep disturbance, fatigue, and caregiver burden over time, and how FCs’ depression, sleep disturbance and fatigue were associated with caregiver burden 6 months after their inclusion to the study.

MATERIAL AND METHODS

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Participants and Settings This longitudinal study was part of a larger interdisciplinary and international collaboration study to advance knowledge of patients with cancer and their FC’s symptoms, problems, burden, and health-related quality of life and to develop an intervention for FC support (Hofso, Rustoen, Cooper, Bjordal, & Miaskowski, 2012a; Hofso, Miaskowski, Bjordal, Cooper, & Rustoen, 2012b; Lindviksmoen, Hofso, Paul, Miaskowski, & Rustoen, 2012). In our study a FC is defined as a family member who “actively participates in sharing the patient’s illness experience on a practical and/or emotional level” (Beaver & Witham, 2007 p. 17). A FC is not necessarily a “family member” in the traditional sense of someone related by blood or marriage (Hudson & Payne, 2008). In most studies of depression, sleep disturbance, fatigue and caregiver burden in FCs, the caregiver’s role is linked to the trajectory of the patient’s treatment, even if it is difficult to determine when a family member assumes the role of a caregiver. This study reports on data from FCs only. To obtain a baseline measurement of depression, sleep disturbance, fatigue, and caregiver burden, FCs were recruited before the initiation of the patient’s first radiation therapy or chemotherapy. Follow up measures were obtained after 3 and 6 months. For recruitment of FCs, the patients with cancer were asked to identify the person most involved in their care and if he or she would be interested to participate in the present study. If the FC had accompanied the patient, the study’s research assistant approached and provided them with information about the study. If the FC was not present, the patient took home a letter for the FC containing information about the study, including the informed consent form and questionnaires. Those who wanted to participate in the study returned the signed written consent and completed questionnaires in two separate envelopes. FCs who did send back this information were contacted once by phone by the research assistant and asked again if they wanted to participate in the study. FCs were included if they were adults (≥18 years of age) at the time when the patients as diagnosed with cancer (breast, head- and neck, ovarian, or colorectal cancer), and were able to read, write, and understand Norwegian. The study was approved by the Regional Committee for Medical and Health Research Ethics, the local Data Inspectorate, and the institutional review board at Oslo University Hospital, Radiumhospitalet.

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Instruments FCs completed a number of self-report questionnaires that covered demographic characteristics, depression, sleep disturbance, fatigue, and caregiver burden.

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DEMOGRAPHIC CHARACTERISTICS The demographic questionnaire asked for information on age, marital status, living situation, relation to the patient with cancer, level of education, and employment status (Valeberg, Kolstad, Smastuen, Miaskowski, & Rustoen, 2012) . Depression. FCs’ depressive symptoms were assessed using the Center for Epidemiologic Studies Depression Scale (CES-D) (Radloff, 1977). The CES-D consists of 20 items selected to represent the major symptoms in the clinical syndrome of depression measured on a 4-point Likert-type scale ranging from: “rarely or none of the time” (0) to “most or all the time” (3). The CES-D is scored by summing individual items to produce a total score. Scores can range from zero to 60, with higher scores indicating the presence of more symptoms, weighted by frequency of occurrence during the previous week. Scores of 16 or higher indicate the need for participants to seek clinical evaluation for major depression, and 16 is the cutoff value for a referral. This scale has well-established concurrent and construct validity (Carpenter et al., 1998; Sheehan, Fifield, Reisine, & Tennen, 1995). In the literature Crohnbach’s alpha coefficients are .80 or higher (Radloff, 1977). In the present study, its Chronbach’s alpha was .92. Sleep disturbance. The General Sleep Disturbance Scale (GSDS) consists of 21 items that evaluate various aspects of sleep disturbance (Lee, 1992). Each item is rated on a Numeric Rating Scale (NRS) that ranges from 0 (never) to 7 (every day). The total GSDS score is the sum of seven subscale scores (quality of sleep, quantity of sleep, sleep onset latency, midsleep awakenings, early awakenings, medications for sleep, excessive daytime sleepiness) and the total can range from 0 (no disturbance) to 147 (extreme disturbance). Higher total and subscale scores indicate higher levels of sleep disturbance. Subscales scores of ≥3 and a total score of ≥43 indicate a significant level of sleep disturbance (Fletcher et al., 2008b). The GSDS has well-established validity and reliability in shift workers, pregnant women, patients with cancer, or HIV, and in FCs (Carney et al., 2011; Fletcher et al., 2008b). In the present study, its Chronbach’s alpha was .91. Fatigue. The 18-item Lee Fatigue Scale (LFS) consists of 13 items to assess fatigue and 5 items to assess energy levels. A fatigue severity score is calculated as the mean of the 13 items in the fatigue subscale and can range from 0 to 10, with higher scores indicating higher levels of perceived fatigue. The energy subscale scores were not used in this article. The LFS has been used to measure the severity of fatigue in healthy individuals, as well as in

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patients with cancer and HIV (Fletcher et al., 2008b; Lerdal, Kottorp, Gay, & Lee, 2013). The LFS was chosen as the fatigue measure for our study because it is relatively short and easy to administer. In addition, it does not focus on cancer-related fatigue, and as such, is appropriate for FCs. The LFS has established validity and high internal consistency and reliability (Lee, Hicks, & Nino-Murcia, 1991). In the present study, its Chronbach’s alpha was .86. Caregiver burden. Caregiver burden was assessed using the Caregiver Reaction Assessment (CRA) Scale, which had been found valid and reliable in previous studies on FCs of patients with a variety of chronic illnesses (Given et al., 1992; Stommel, Wang, Given, & Given, 1992). The scale has been used in Norwegian samples before, and has shown satisfactory psychometric properties in FCs of cancer patients (Grov, Fossa, Tonnessen, & Dahl, 2006). The CRA is a 24-item instrument, assessing both positive and negative reactions to care giving, and asks FCs to indicate their level of agreement to statements using a 5-point Likert-type scale. FCs are asked to indicate the following for each item: strongly agree/agree/neither agree nor disagree/disagree/strongly disagree. The CRA measures five aspects of burden. Lack of Family Support (five items), aims to assess the FCs sense of other family members having left him or her to provide all of the patient’s care (Chronbach’s alpha was .82). Impact on Health (four items) refers to the FCs perception that his or her health has suffered as a result of the obligations of care-giving (Chronbach’s alpha was .87). The Impact on Schedule (five items) indicates the perceived effort and difficulty of obtaining health care needs and making care-related arrangements (Chronbach’s alpha was .87). Impact on Finances (three items) measures economic costs and losses likely caused by care giving (Chronbach’s alpha was .83). Caregivers Esteem (seven items), unlike the other subscales, measures the perceived positive aspects of care giving (Chronbach’s alpha was .90). Total scores of each subscale of the instrument were generated by summing up the individual items of each subscale. Four of the CRA-dimensions are constructed in such a way that higher numbers indicate high levels of burden, while the self-esteem dimension is constructed in the opposite manner: a low score indicates negative reactions to or high burden of caring.

Data Analysis Categorical data were described with proportions and percentages, continuous data with means and standard deviation (SD). The sum scores for the instruments and their sub-scales were calculated as described by the developer for each of the instruments. Internal consistency and reliability for each of the instruments were assessed using Cronbach’s alpha. Data were collected at baseline, three months and six months after the initiation of the patient’s first radiation therapy or chemotherapy. Crude association between the outcomes of depression, sleep disturbance, fatigue, caregiver

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burden (dependent variables), and selected demographic variables (FC’s gender, age, education level, employment, marital status, and relation to the patient) were analyzed using univariate linear regression models. Variables that were significantly associated with the outcome variables were entered into multiple linear regressions. Mixed models for repeated measures were fitted for all the sum-scores of all the four instruments used as dependent variables. A separate model was fitted for each of the five burden subscales after 6 months. The final models presented include only the variables that remained statistically significant when all the variables that were significant in the univariate regression were included. P-values < .05 were considered statistically significant. All tests were two-sided. All analyses were performed using SPSS version 18.

RESULTS Demographic Characteristics For the total study 891 participants were recruited from three outpatient clinics at the Division of Cancer Medicine, Surgery and Transplantation, Oslo University Hospital. Of these were 613 patients and 278 FCs. After 3 months, TABLE 1 Demographic Characteristics Total sample Gender Median age, years Male Female Relationship to the patient

Marital status Living together with the patient Highest level of education Employment status

Patient’s cancer diagnosis

Male Female 56 (range 21–85) 59 52 Spouse/partner Child Sibling Parent Other Married Unmarried/divorced/widowed Yes No Primary Secondary College/university Full-time/part-time work On sick leave or disability pension Retired/other Breast Head and neck Genitourinary Ovarian

FCs

%

278 166 112

100 59.7 40.3

197 17 13 30 19 241 34 204 70 32 116 119 163 51

71.4 6.2 4.7 10.9 6.9 87.3 12.3 73.9 25.4 11.6 42 43.1 59.1 18.4

71 122 71 53 32

25.6 43.9 25.5 19.1 11.5

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236 FCs filled out the questionnaires, and after 6 months 198 filled out the questionnaires. FCs demographic characteristics are presented in Table 1. Of these FCs, 166 (59.7%) were male and 112 (40.3%) were female. The median age was 52 years (range 21–83) for females, and 59 years (range 24–84) for male FCs. The majority (n = 241) of the FCs were married (87.3%), and 204 (73.9%) were living together with the patient. More than 71% (n = 197) were spouses or partners to the patient, while 30 (10.9%) were parents and 17 (6.2%) were adult children. The majority of the FCs were well educated, and more than 58% (n = 163) had full- or part-time employment. The participants were FCs of patients diagnosed with breast (n = 122, 43.9%), head and neck (n = 71, 25.5%), colorectal (n = 53, 19.1%), and ovarial (n = 32, 11.5%) cancer. Of these patients 40.1% were male and 59.9% were female. The median age was 61 years (range 24–90) for female patients, and 64 years (range 26–95) for male patients with cancer.

Level of Depression, Sleep Disturbance, Fatigue, and Caregiver Burden Over Time The mean severity scores for depression, sleep disturbance, fatigue, and caregiver burden, as well as the percentage of FCs with scores higher above the cut point of depression and sleep disturbance at baseline, after 3 months and 6 months are displayed in Table 2. DEPRESSION The mean severity score for the total sample at baseline was 10.9 (SD 9.4), and remained unchanged over time. At baseline about one fourth (24.3%) of the FCs reported CES-D scores that were higher than the cutoff point of 16, and this proportion declined slightly after 6 months, but still over a fifth of the FCs (21.3%) had scores indicating depression after 6 months. SLEEP DISTURBANCE The mean severity score for the total sample at baseline was 39.8 (SD 21.8), and decreased slightly over time to 37.6 (SD 21.7); however, this change was not significant (p = .067). At baseline 39.3% of the FCs reported GSDS scores above the cutoff point of 43.0. This proportion declined slightly after 3 months, but still a third of the FCs (31%) showed signs of sleep disturbance after 6 months. FATIGUE The mean fatigue score for the total sample at baseline was 2.4 (SD 2.1), and remained stable over time.

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SD = standard deviation.

Depression (CES-D): high ≥ 16 Sleep disturbance (GSDS): high ≥ 43.0 Fatigue (LFS) Caregiver burden (CRA) Caregiver Esteem Lack of Family Support Impact on Finances Impact on Schedule Impact on Health

Variables

3 months

6 months

9.4

2.1 .6 .7 .9 .9 .7

2.4 3.9 1.9 2.1 2.4 2.0

39.8 21.8

10.9 39.3

24.3

3.9 2.1 2.0 2.4 2.2

2.4 .7 .7 .8 .8 .8

2.1

37.0 21.5

9.9 10.0 31.5

26.2

9.9

3.9 2.0 1.9 2.3 2.1

2.3

.6 .7 .8 .8 .8

2.2

37.6 21.7

9.4

31.0

21.3

Above Above Above cutoff score cutoff score cutoff score Mean SD (%) Mean SD (%) Mean SD (%)

Baseline

.91 .86 .90 .82 .83 .87 .87

.00 − 9.85 1.57 − 5.00 1.00 − 4.80 1.00 − 5.00 1.00 − 5.00 1.00 − 5.00

.92

.00 − 51.00 4.42 − 107.00

Cronbach’s Alpha

Range

TABLE 2 Mean Severity Scores on Depression (CES-D), Sleep Disturbance (GSDS), Fatigue (LFS) and Caregiver Reaction Assessment (CRA) Subscales for the Total Sample over Time

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CAREGIVER BURDEN

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The mean caregiver burden severity scores for FCs at baseline were highest for “Impact on Schedule” (2.4, SD .9), followed by “Impact on Finances” (2.1, SD .9), “Impact on Health” (2.0, SD .7), and “Lack of Family Support” (1.9, SD .7). The FCs’ reported “Caregiver Esteem” score was 3.9 (SD .6), and did not change over time. The mean severity score for “Impact on Finances” decreased after 6 months, but this change was not significant (p = .052). The mean severity scores for the remaining subscales did not change significantly over time.

Associations Between Demographic Characteristics and Depression, Sleep Disturbance, Fatigue, and Caregiver Burden Over Time The results from analysis of associations between selected caregiver background characteristics with FCs experiences are listed in Table 3. Only the variables that showed a statistically significantly association with depression, sleep disturbance, fatigue, and each of the five caregiver burden subscales were included in the final model. DEPRESSION FCs’ gender and employment status were significantly associated with depression. Female FCs reported significantly higher scores of depression than male FCs. FCs who were not employed reported significantly higher scores of depression than FCs who were employed. Male FCs who were employed reported significantly higher scores of depression than their female counterparts. FCs’ age, education level, marital status, and relation to the patient were not significantly associated with FCs depression. SLEEP DISTURBANCE FCs’ gender, relationship to the patient, and employment status were significantly associated with sleep disturbance. Female FCs reported significantly higher scores of sleep disturbance than did male FCs. FCs with a different type of relation to the patient than spouse or partner reported significantly higher scores on sleep disturbance than FCs who were spouse or partner to the patient. FCs who were not employed reported significantly higher scores of sleep disturbance than those who were employed. Male employed FCs reported significantly higher scores of sleep disturbance than female FCs with employment. FCs who were spouse or partner to the patient and employed reported significantly higher scores on sleep disturbance than FCs who were employed but had a different type of relation to the patient. Among FCs who were the patient’s spouse or partner, women reported significantly higher scores on sleep disturbance than men. FCs’ age, level of education and marital status were not associated with reported sleep disturbance.

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TABLE 3 Associations Between Demographic Characteristics and Depression, Sleep Disturbance, Fatigue, and Caregiver Burden Over Time: The Final Models

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Variable Model 1: Caregivers Esteem (CRA) Male (vs. female) Employed (vs. not employed) Male∗ Employed Model 2: Lack of Family Support (CRA) Male (vs. female) Employed (vs. not employed) Male∗ Employed Model 3: Impact on Finances (CRA) Age Male (vs. female) Employed (vs. not employed) High School educated (vs. university education) Model 4: Impact on Schedule (CRA) Employed (vs. not employed) Model 5: Impact on Health (CRA) Male (vs. female) Employed (vs. not employed) Male∗ Employed Model 6: Depression (CES-D) Male (vs. female) Employed (vs. not employed) Male∗ Employed Model 7: Sleep Disturbance (GSDS) Male (vs. female) Spouse/partner to the patient (vs. child, parent,friend, sibling, neighbour) Employed (vs. not employed) Male∗ Employed Spouse/partner to the patient∗ Employed Spouse/partner to the patient∗ Male Model 8: Fatigue (LFS) Age Male (vs. female) Employed (vs. not employed) Male∗ Employed

Estimate of β

95% CI

p-value

.77 .28 −.75

.39 to 1.15 .00 to .56 −1.15 to − .35

Family caregivers of cancer patients: perceived burden and symptoms during the early phases of cancer treatment.

This study investigated levels of symptoms, caregiver burden, and changes over time in 278 family caregivers (FC) of cancer patients. FCs experienced ...
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