Association between hope and burden reported by family caregivers of patients with advanced cancer

Transcription

1 Support Care Cancer (2013) 21: DOI /s ORIGINAL ARTICLE Association between hope and burden reported by family caregivers of patients with advanced cancer Inger Utne & Christine Miaskowski & Steven M. Paul & Tone Rustøen Received: 14 August 2012 /Accepted: 12 April 2013 /Published online: 27 April 2013 # Springer-Verlag Berlin Heidelberg 2013 Abstract Purpose The aim of this study, in a sample of family caregivers (FCs) of patients with advanced cancer, was to describe the level of FC burden using the Caregiver Reaction Assessment (CRA). In addition, the effects of select FC and patient characteristics on each of the CRA subscales were evaluated. Methods FCs and patients (n=112) completed a demographic questionnaire, and Herth Hope Index, and the Hospital Anxiety and Depression Scale. FCs completed the CRA. Data were analyzed using multiple linear regression analyses. Results For three of the five CRA subscales (i.e., impact on finances, impact on daily schedule, and impact on health ), the mean scores were comparable to a Norwegian sample of FCs caring for patients in the late palliative phase. The variance in each of the CRA subscales was explained by different factors. Total explained variance ranged from 5.5 % ( lack of family support ) to 31.8 % ( impact on daily schedule ). FC characteristics, such as being female and lower educational level, distress regarding the patient s pain, anxiety, depression, and level of hope, as well as the I. Utne (*) Faculty of Health Science, Oslo and Akershus University College of Applied Science, Oslo, Norway inger.utne@hioa.no C. Miaskowski : S. M. Paul Department of Physiological Nursing, University of California, San Francisco, CA, USA T. Rustøen Division of Emergencies and Critical Care, Department of Research and Development, Ullevål, Oslo University Hospital, Oslo, Norway T. Rustøen Lovisenberg Diaconal University College, Oslo, Norway patients number of comorbidities, depression, and hope contributed to an increase in various domains of FC burden. FCs level of hope was a significant predictor for three of the CRA subscales (i.e., self-esteem, lack of family support, and impact on health ). Conclusions Findings suggest that FCs and patients level of hope are important determinants of caregiver burden and that FCs with lower levels of hope represent a high-risk group for higher levels of caregiver burden. Keywords Oncology. Family caregiver. Burden. Hope. Cancer pain Introduction Caregiver burden is defined as the overall consequences associated with a demanding and stressful caregiver situation [1]. FCs experience numerous difficulties and increased responsibilities during and after the patient s cancer treatment and rehabilitation [2, 3]. Both FC and patient characteristics are known to impact the FCs experience of burden. Caregiver characteristics associated with increased burden include younger age [4], being female [4], lower level of education [5], living alone with the patient [6], having a distressed relationship [6, 7], as well as higher levels of anxiety [2, 8] and depression [2, 8, 9]. For example, in one study [2], prevalence rates for depression in FCs ranged from 20 to 73 % and depressive symptoms had negative effects on FC outcomes. In another study [10], caregiving for palliative care patients with cancer had a negative impact on FCs mental and physical health, and FCs depression was the primary variable associated with caregiver burden [9]. Finally, Cameron and colleagues [11] reported that FCs with lower levels of education reported higher levels of emotional distress associated with the caregiving experience.

2 2528 Support Care Cancer (2013) 21: Patients characteristics including dependency [6, 12], and care characteristics such as intensity of care [6], and deterioration of physical and mental function [13] are associated with increased caregiver burden. For example, Kurtz and colleagues [14] found that FCs who cared for depressed patients reported a greater impact on their schedule. In addition, increased symptoms, physical needs, and poorer performance status had a negative impact on FCs level of family support, finances, and schedule. The Caregiver Reaction Assessment (CRA) [15] was used in most of the aforementioned studies to evaluate caregiver burden [1, 2, 6, 8, 12, 14]. Across these studies, FC characteristics were used as the primary predictors of FC burden. In addition, most of these studies assessed FCs of newly diagnosed patients or those with recurrent disease. Only one study evaluated FCs of patients with advanced cancer [8]. In an extensive review of family caregiving, the authors [3] noted that it is likely that variations exist in symptoms, problems, and responsibilities depending on the severity of patient s illness. Hope is considered an important factor in patients personal adjustments during times of loss, uncertainty, and suffering [16]. It is an essential element in the lives of people with cancer [17] and in cancer patients with pain [18]. Hope is considered an effective coping strategy for oncology patients because it provides adaptive power to help them get through difficult situations, achieve meaning, and achieve desired goals [19 22]. In addition, in a recent metasynthesis of the experience of hope in FCs of persons with chronic illnesses, including cancer [23], the authors described the importance of hope to FCs regardless of age, relationship, or setting. In a study of FCs of palliative patients [24], FCs reported lower levels of hope than the patients. While numerous studies documented significant problems and distress in FCs of oncology patients [24, 25], no study was found that evaluated the influence of both patients and FCs level of hope on FCs evaluation of burden. However, as optimism is described as a central part of hope [26, 27], it is interesting to note that in a study of FCs of outpatients receiving chemotherapy [12], FCs who were more optimistic reported lower levels of caregiver burden. Therefore, based on the fact that hope is essential for oncology patients and their FCs, we hypothesized that both patients and FCs level of hope will influence FCs perceptions of burden. Given the importance of FCs in cancer care, the limited number of studies of FCs of patients with advanced cancer, the limited number of studies that evaluated the impact of both FC and patient characteristics on FCs burden, the importance of hope in the lives of oncology patients and their FCs, and the fact that the influence of patients and FCs level of hope on FCs burden have not been investigated, additional studies are needed that incorporate all of these potential predictors. Therefore, the purposes of this study in a sample of FCs of patients with advanced cancer were to describe the level of FC burden using the CRA and to evaluate the effects of select FC and patient characteristics on each of the CRA subscales. Methods This study is part of a randomized clinical trial that evaluated the efficacy of the Norwegian version of the PRO- SELF Pain Control Program (PRO-SELF PCP-N) in oncology outpatients with pain from bone metastasis. The PRO-SELF PCP-N was adapted for this Norwegian sample based on the work of Miaskowski and colleagues [28]. A detailed description of the PRO-SELF intervention was published previously [29]. Participants A total of 179 oncology outpatients (>18 years old), who experienced pain from bone metastasis, with a Karnofsky Performance Status (KPS) score of >50; an average pain intensity score of >2.5 on a 0 to 10 numeric rating scale (NRS); and radiographic evidence of bone metastasis participated in the study. Of these patients, 112 (62.6 %) had a FC who participated in this study. FCs were identified by the patients as the person most involved in their care. Study procedures This study was approved by the Regional Medical Research Ethics Committee, Health Region II (South) of Norway and the Norwegian Social Science Data Services. Written informed consent was obtained from patients and FCs. For the purposes of this paper, enrollment data from 112 dyads were analyzed. Patients and FCs completed the enrollment questionnaires during the initial home visit before the start of the intervention. Instruments FC and patient questionnaires Demographic characteristics obtained information on age, gender, educational level, marital status, employment status, and relationship between the FC and the patient. Hope was measured using the Norwegian version of the Herth Hope Index (HHI) [30]. Each item is rated on a 4- point Likert scale that ranges from strongly disagree (1) to strongly agree (4). A total HHI score that can range from 12 to 48 is calculated and higher scores indicate higher levels of hope. The validity and reliability of the HHI is well established [18, 31 34].

3 Support Care Cancer (2013) 21: Anxiety and depression were measured using the Hospital Anxiety and Depression Scale (HADS) [35, 36]. Each item is scored from 0 (minimally present) to 3 (maximally present) with higher scores indicating higher levels of anxiety and depression. Validity and reliability of the HADS is well established. FC questionnaires Self-assessed health was measured using one item from the 30-item European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) [37]. FCs were asked to respond to the following question How would you rate your overall health during the past week? using a 1 (very poor) to 7 (very satisfied) scale. Distress associated with the patient s pain was measured using one item from the Pain Experience Scale [38]. This item assessed pain-related distress in the FC (i.e., How disturbing/upsetting is the patient s pain to the FC? ), using a 0 (not at all) to 10 (very much) NRS. Satisfaction with life was measured using one item. FCs were asked to respond to the following question When you think about how you are doing, are you in general satisfied with life, or in general dissatisfied? using a 1 (extremely satisfied) to 7 (extremely dissatisfied) scale. Caregiver Reaction Assessment caregiver burden was evaluated using the 24-item CRA [39]. This instrument evaluates multiple dimensions of the FCs experience [15] and is scored into five domains: self-esteem (seven items), lack of family support (five items) that aims to assess the perceived lack of help in delivering care by the FC, impact on finances (three items) that measures financial strain on the caregiver, impact on daily schedule (five items) that measures the extent to which caregiving interrupts the usual daily activities, and impact on health (four items) that aims to measure the FCs feeling of deterioration in physical health. Each item is rated on a 5-point Likert scale that ranges from strongly disagree (1) to strongly agree (5). The subscale caregiver's selfesteem aims to measure positive experiences of caregiving, (i.e., the extent to which caregiving imparts individual selfesteem; a lower score indicates higher burden). The other four subscales assess negative experiences of caregiving (i.e., higher scores indicate higher level of burden). A mean score for each subscale is created that can range from 1.0 to 5.0. The CRA has well-established validity and reliability in FCs of patients with cancer in different stages of the disease [6, 40 42], including advanced cancer [41]. Patient questionnaires Self-assessed worst pain in the past 24 h was measured using a single item from the Norwegian version of the Brief Pain Inventory (BPI-N) [43]. Worst pain was rated on a 0(nopain)to10(theworstpainIcanimagine)NRS. Number of comorbidities was measured by answering yes/no to whether or not the patient had 13 different illnesses. Functional status was assessed by the research nurse, using the valid and reliable Karnofsky Performance Status scale [44 47]. Statistical analyses Data were analyzed using SPSS Version 18.0 (SPSS Inc, Chicago, IL). Descriptive statistics were generated to characterize the FCs and the patients and CRA subscales. In order to develop the most parsimonious model for each of the CRA subscales, the regression analyses proceeded in two stages. In the first stage, the FC variables that were hypothesized to be associated with caregiver burden (i.e., gender, age, lives with the patient, education, HHI total scores, HADS scores, self-assessed health, satisfaction with life, and how distressing the patients pain was for FCs) were entered into the regression model simultaneously. Variables were removed sequentially until the most parsimonious model was identified. In the second stage, select patient variables (i.e., KPS score, worst pain score, number of comorbidities, HHI total scores, and HADS scores) were added along with the FC variables that were retained in the first stage. To construct the final model, variables were systematically removed until the most parsimonious model was obtained. In order to include education in the regression analyses, this variable was dummy coded into a set of three dichotomous variables (i.e., secondary versus primary school, college <4 years versus primary school, and college >4 years versus primary). A p value of <0.05 was used to determine statistical significance. Results Demographic and clinical characteristics of the FCs As shownintable1, the majority of the FCs was female (60 %) with a mean age of 63.1 years (SD=10.7). Almost all of the FCs (94 %) were married to the patients. FCs reported their own mean health status as 5.4 (SD=1.3), satisfaction with life as 3.2 (SD=1.1), and distress associated with the patient s pain as 5.5 (SD=2.9). The mean HHI total score was 36.8 (SD=4.0). Mean scores for anxiety and depression were 13.7 (SD=3.7) and 11.4 (SD=3.4), respectively. Demographic and clinical characteristics of the patients As shown in Table 1, the majority of the patients was male (57 %) with a mean age of 64.6 years (SD=12.3). The most prevalent type of cancer was prostate (42 %), mean KPS score was 71.3 (SD=8.0), and the mean number of comorbidities was 0.8 (SD=1.0). Patients mean worst pain scores as 6.8 (SD=1.9). Mean HHI total score was 37.4 (SD

4 2530 Support Care Cancer (2013) 21: Table 1 Demographic characteristics of the family caregivers (n=112) and demographic and clinical characteristics of the oncology patients with advanced cancer (n=112) Characteristics Family caregivers (n=112) Patients (n=112) Mean (SD) Mean (SD) Age (years) 63.1 (10.7) 64.6 (12.3) Worst pain (0 to 10) 6.8 (1.9) Number of comorbidities (0 13) 0.8 (1.0) Karnofsky Performance Status score (0 100) 71.3 (8.0) Self-assessed health (1 7) 5.4 (1.3) Satisfaction with life (1 7) 3.2 (1.1) Distress about patient s pain (0 10) 5.5 (2.9) Hope (12 48) 36.8 (4.0) 37.4 (4.4) Anxiety (0 21) 13.7 (3.7) 12.4 (3.2) Depression (0 21) 11.4 (3.4) 11.7 (3.1) N (%) N (%) Gender Male 45 (40) 64 (57) Female 67 (60) 48 (43) Education Primary school 55 (50) 13 (11) Secondary school 15 (14) 51 (46) University/college< 19 (17) 22 (20) 4 years University/college> 21 (19) 25 (23) 4 years Employment status Working full/part time 46 (41) Sick leave/welfare 14 (12) Retired 38 (34) Other 13 (13) Relationship to the patient Spouse 105 (94) Child/sibling/other 7 (6) Cancer diagnosis Prostate 47 (42) Breast 35 (31) Other 19 (17) Colon 11 (10) =4.4). Mean scores for anxiety and depression were 12.4 (SD=3.2) and 11.7 (SD=3.1), respectively. CRA subscale scores As shown in Fig. 1, the mean scores for each of the negative domains ranged from 1.8 (SD=0.6) on the subscale lack of family support to 2.7 (SD=0.9) on the subscale impact on daily schedule. The mean score on the self-esteem subscale was 4.1 (SD=0.6). Predictors of caregiver burden for each of the CRA subscales Table 2 presents the results of the multiple regression analyses for the five domains evaluated using the CRA. Each domain of FC burden was explained by different FC and patient factors with a total explained variance ranging from 5.5 % ( lack of family support ) to 31.8 % ( impact on daily schedule ). Self-esteem In the final model, 6.2 % of the variance in selfesteem was explained by FCs level of hope. FCs with higher levels of hope reported higher self-esteem scores. Lack of family support Only 5.5 % of the variance in lack of family support was explained in the final model and all of Mean score Esteem Lack of family support Impact on finances Impact on schedule Impact on health Fig. 1 Subscale scores for the Caregiver Reaction Assessment. All values are plotted as means and standard deviation

5 Support Care Cancer (2013) 21: the variance was explained by FCs level of hope. FCs with lower levels of hope perceived less family support. Impact on finances In the final model, 20.3 % of the variance in impact on finances was explained by FCs level of depression, their level of education, and patients number of comorbidities. Overall, education uniquely explained 9.3 % of the variance. Specifically, a college education of >4 years compared with primary school uniquely explained 7.2 % of the variance in impact on finances. FCs with >4 years of college education compared to those with only primary school, reported less financial strain. FCs level of depression explained 5.5 % of the variance. FCs who had a higher level of depression reported higher financial strain. Impact on daily schedule In the final model, 31.8 % of the variance in impact on schedule was explained by FCs level of anxiety and distress associated with the patients pain and patients level of depression. FCs anxiety uniquely explained 14.1 % of the variance in impact of daily schedule and their distress about the patients pain explained 3.1 %. Patients depression uniquely explained 3.9 % of the variance. FCs who had a higher level of anxiety and were more distressed about the patients pain, and who took care of patients with higher levels of depression, reported a greater level of impact on daily schedule. Impact on health In the final model, 27.9 % of the variance in impact on health was explained by FCs gender, hope, and distress, and patients depression and hope. FCs gender uniquely explained 5.0 % of the variance in impact on health and FCs hope uniquely explained 9.3 %. The patients depression uniquely explained 6.5 % of the variance in impact on health and their hope uniquely explained 6.6 %. FCs who were women and those with a lower level of hope, and those who took care of patients with a higher level of depression and hope perceived more impact on health. Discussion This study is the first to assess factors associated with caregiver burden in FCs of advanced cancer patients and to include both patients and FCs level of hope in these analyses. A variety of patient and FC characteristics explained variations in the different domains of burden. Findings from this study suggest that FCs and patients level of hope are important determinants of three domains of caregiver burden. Similar to a previous study of terminally ill cancer patients [42], the variance in each of the domains of the CRA was explained by different factors, with total explained variance ranging from 5.5 % (lack of family support) to 31.8 % (impact on daily schedule). In contrast, in a study of newly diagnosed patients with colorectal cancer [6], the total explained variance ranged from 11 to 46 % (see Table 3). The differences across these studies may be partly explained by the different predictors that were evaluated. Alternatively, different FC and patient characteristics may contribute to different aspects of caregiver burden depending on the stage of the patient s illness, the health status of the FC, as well as the duration and demands of caregiving [5]. An important contribution of this study is its evaluation of the impact of hope on caregiver burden. Of note, FCs level of hope explained between 6.2 and 9.3 % of the variance in three of the CRA subscales (i.e., self-esteem, lack of family support, and impact on health). In fact, hope was the only significant predictor for the self-esteem and lack of family support subscales and explained the largest amount of the variance in impact on health. FCs with a higher level of hope, tended to appraise their caregiving experience more positively, had more support from their family, and experienced less health problems. Hope is known to be an effective coping strategy for oncology patients because it provides adaptive power to help them get through difficult situations, achieve meaning, and achieve desired goals [19 22]. Therefore, it is possible that hope is an effective coping strategy for FCs as well. This hypothesis is supported by Mechanic [48] who noted that one important function of the coping process was to maintain a state of psychological equilibrium to better meet external demands. Higher levels of hope might assist FCs with adjustments to the caregiving situation and be associated with better caregiver outcomes. An alternative hypothesis is that hope may be linked to the personality characteristic of optimism that partially explains who does and does not adapt to the demands of caregiving. As optimism is described as a central component of hope [26, 27], it is interesting to note that Given and colleagues [12] reported that FCs who remain optimistic may interpret the cancer experience less negatively and keep stressors within manageable bounds. Consistent with our study findings, FCs with higher levels of optimism reported less impact on their health and daily schedule [12]. These findings suggest that FCs personality characteristics that are relatively stable over time, can moderate FCs distress, and help FCs to adapt to the caregiving situation. The importance of hope is consistent with previous studies that explored FCs perspectives on hope. For example, in a study of FCs experiences of caring for terminally ill patients [49], hope served as a buffer to stress and was a significant factor in FCs physical and mental well-being. In addition, findings from studies of FCs of advanced cancer patients suggest that hope is important for dealing with the caregiver experience [50, 51]. Duggelby and colleagues [52] noted in their metasynthesis, that hope was associated with higher levels of physical and psychosocial well-being, and social network was an important factor for FC s hope.

6 2532 Support Care Cancer (2013) 21: Table 2 The effect of family caregiver (FC) and patient characteristics on each of the subscales of the caregiver reaction assessment a Self-assessed health was not considered as one of the predictors of Impact on Health Source R 2 r Beta R 2 change df F value p value Dependent variable: self-esteem Overall model.062 1, Hope (FC) , Dependent variable: lack of family support Overall model.055 1, Hope (FC) , Dependent variable: impact on finances Overall model.203 5, <.001 Depression (FC) , Education (FC).093 3, Secondary vs primary , College <4 years vs primary , College >4 years vs primary , Number of comorbidities (patient) , Dependent variable: impact on daily schedule Overall model.318 3, <.001 Anxiety (FC) , <.001 Distress (FC) , Depression (patient) , Dependent variable: impact on health a Overall model.279 5, <.001 Female (FC) , Hope (FC) , Distress (FC) , Depression (patient) , Hope (patient) , Therefore, it is interesting to note that Park and colleagues [42] found that having other caregivers to share the caregiving with seemed to be the single most important determinant of caregiver burden. This finding is supported by Daly and colleagues [53] who reported that caregiver social support played the most significant role in predicting caregiver burden. Additional studies on the influence of hope and social support on caregiver burden are warranted. The mean scores for the CRA subscales of impact on finances, impact on daily schedule, and impact on health were similar to those reported by FCs of palliative care patients in Norway [8]. However, FCs in this study reported lower levels of family support (1.8 (SD=.6)) than a comparable sample of Norwegians FCs (2.1 (SD=.7)) [8]. This difference equates with a medium effect size (i.e., d=.50) and may be partially explained by the fact that the FCs studied by Grov and colleagues had more restrictions on their social interactions because patients were in the late palliative phase of their illness [54]. In addition, as the physical and emotional demands of caregiving increase, the need for emotional support increases [53, 55]. Although the FCs in the two Norwegian samples [8] reported different levels of family support, it is interesting to note that across studies of FCs of patients with advanced disease [8, 41], family support was the subscale for which FCs reported less burden. In this study of FCs of palliative care patients as well as in a study of FCs of terminally ill patients [42], and FCs of newly diagnosed oncology patients [6], the only FC demographic characteristic associated with various domains of caregiver burden across the studies listed in Table 3 was education. Consistent with findings from Park and colleagues [42], higher levels of education were associated with lower levels of FC burden. As noted by Grov and colleagues [56], it may be easier for a well-educated person to find and utilize help from others. However, Nijboer and colleagues [6] found that FCs with more education reported less self-esteem. In addition, consistent with two previous reports [12, 14], FCs who cared for patients with higher levels of depression felt a greater impact on their schedule and on their health. Findings from the studies reported in Table 3 [6, 42] suggest that different FC, patients, and care characteristics are associated with different domains of caregiver burden.

7 Support Care Cancer (2013) 21: Table 3 Comparison of predictors of caregiver reaction assessment (CRA) scale between family caregivers (FC) of palliative care patients and other published studies CRA subscales FCs of palliative care patients (n=112) FCs of newly diagnosed oncology patients a,b (n=148) FC of terminally cancer patients a,c (n=136) Variable % of explained variance Variable % of explained variance Variable % of explained variance Self-esteem Hope (FC) 6.2 Education (FC) 10.0 Stoma (PT) 5.0 Lack of family support Hope (FC) 5.5 Living situation (FC) 18.0 Married (FC) 8.4 Quality of relationship (FC) Education (FC) Caregiver support share 23.4 caregiving Impact on finances Depression (FC) 5.5 Income (FC) 6.0 Income (FC) 11.0 Education (FC) 9.3 Intensity of care 5.0 Caregiver support share 2.9 caregiving Number of comorbidities (PT) 2.8 d Impact on daily schedule Anxiety (FC) 14.1 FC characteristics 7.0 Male (FC) 4.5 Distress (FC) 3.1 Dependency (PT) 15.0 Caregiver support share caregiving Depression (PT) 3.9 Care characteristics (disease-related tasks, changes in activities, accompany patients on visits) Impact on health Female (FC) 5.0 FC characteristics 13.0 FC characteristics (age, male) Hope (FC) 9.3 Care characteristics (changes in activities) 9.0 Caregiver support share caregiving Distress (FC) 2.5 d Depression (PT) 6.5 Hope (PT) 6.6 a Variables which significantly contributed to the final model are listed in the table b Nijboer et al. [6, 39] c Park et al. [57] d Not significant contribution to the final model

8 2534 Support Care Cancer (2013) 21: However, the findings across studies are inconsistent and may be partially explained by differences in patients disease characteristics as well as the variables chosen as covariates. As suggested by Oberst and colleagues [5], it is unlikely that any simple constellation of FC and/or patient characteristics will explain or predict all aspects of FC burden, given the complexities of family dynamics and variation in patients disease trajectories. Limitations of this study must be noted. First, due to its cross-sectional design, research is needed to predict how level of FC burden changes over time. Second, the sample was relatively small which may have limited our ability to identify additional determinants of FC burden and a higher percentage of explained variance. Additional research is needed that includes other potential predictors of caregiver burden (e.g., lack of social support, personality characteristics, anxiety, and coping styles). Finally, findings from this study may not generalize to other ethnic or cultural groups. In summary, this study is the first to evaluate hope as a predictor of burden in a sample of FCs of patients with advanced cancer. Findings from this study suggest that FCs and patients level of hope are important determinants of caregiver burden. FC characteristics seem more important predictors of burden than patient characteristics. In order to develop interventions to decrease burden, longitudinal studies are needed that examine changes in and predictors of caregiver burden across the patients disease and treatment trajectories. Acknowledgments The study was funded by The Research Council of Norway and Oslo and Akershus University College of Applied Science, Norway. Conflict of interest None of the authors have any competing financial interests. The authors have full control of all primary data and agree to allow the journal to review the data if requested. References 1. Given BA, Given CW, Helms E, Stommel M, DeVoss DN (1997) Determinants of family care giver reaction. New and recurrent cancer. Cancer Pract 5: Fletcher BS, Paul SM, Dodd MJ, Schumacher K, West C, Cooper B, Lee K, Aouizerat B, Swift P, Wara W, Miaskowski CA (2008) Prevalence, severity, and impact of symptoms on female family caregivers of patients at the initiation of radiation therapy for prostate cancer. J Clin Oncol 26: Stenberg U, Ruland CM, Miaskowski C (2010) Review of the literature on the effects of caring for a patient with cancer. Psychooncology 19: Blood GW, Simpson KC, Dineen M, Kauffman SM, Raimondi SC (1994) Spouses of individuals with laryngeal cancer: caregiver strain and burden. J Commun Disord 27: Oberst MT, Thomas SE, Gass KA, Ward SE (1989) Caregiving demands and appraisal of stress among family caregivers. Cancer Nurs 12: Nijboer C, Triemstra M, Tempelaar R, Sanderman R, van den Bos GA (1999) Determinants of caregiving experiences and mental health of partners of cancer patients. Cancer 86: Nijboer C, Tempelaar R, Triemstra M, van den Bos GA, Sanderman R (2001) The role of social and psychologic resources in caregiving of cancer patients. Cancer 91: Grov EK, Fossa SD, Tonnessen A, Dahl AA (2006) The caregiver reaction assessment: psychometrics, and temporal stability in primary caregivers of Norwegian cancer patients in late palliative phase. Psychooncology 15: Grov EK, Fossa SD, Sorebo O, Dahl AA (2006) Primary caregivers of cancer patients in the palliative phase: a path analysis of variables influencing their burden. Soc Sci Med 63: Grov EK, Dahl AA, Moum T, Fossa SD (2005) Anxiety, depression, and quality of life in caregivers of patients with cancer in late palliative phase. Ann Oncol 16: Cameron JI, Franche RL, Cheung AM, Stewart DE (2002) Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer 94: Given CW, Stommel M, Given B, Osuch J, Kurtz ME, Kurtz JC (1993) The influence of cancer patients' symptoms and functional states on patients' depression and family caregivers' reaction and depression. Health Psychol 12: Morita T, Hirai K, Sakaguchi Y, Tsuneto S, Shima Y (2004) Family-perceived distress from delirium-related symptoms of terminally ill cancer patients. Psychosom 45: Kurtz ME, Kurtz JC, Given CW, Given B (1995) Relationship of caregiver reactions and depression to cancer patients' symptoms, functional states and depression a longitudinal view. Soc Sci Med 40(6): Given CW, Given B, Stommel M, Collins C, King S, Franklin S (1992) The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Res Nurs Health 15: Herth KA, Cutcliffe JR (2002) The concept of hope in nursing 3: hope and palliative care nursing. Br J Nurs 11: Nowotny M (1991) Every tomorrow, a vision of hope. J Psychosoc Oncol 9: Utne I, Miaskowski C, Bjordal K, Paul SM, Jakobsen G, Rustoen T (2008) The relationship between hope and pain in a sample of hospitalized oncology patients. Palliat Support Care 6: Herth K (2000) Enhancing hope in people with a first recurrence of cancer. J Adv Nurs 32: Benzein E, Norberg A, Saveman BI (2001) The meaning of the lived experience of hope in patients with cancer in palliative home care. Palliat Med 15: Ebright PR, Lyon B (2002) Understanding hope and factors that enhance hope in women with breast cancer. Oncol Nurs Forum 29: Reb AM (2007) Transforming the death sentence: elements of hope in women with advanced ovarian cancer. Oncol Nurs Forum 34:E70 E Duggleby WD, Holstlander L, Kylma J, Duncan V, Hammond C, Williams A (2010) Metasynthesis of the hope experience of family caregivers of persons with chronic illness. Qual Health Res 20: Benzein EG, Berg AC (2005) The level of and relation between hope, hopelessness and fatigue in patients and family members in palliative care. Palliat Med 19: Nekolaichuk CL, Bruera E (1998) On the nature of hope in palliative care. J Palliat Care 14: Rand KL (2009) Hope and optimism: latent structures and influences on grade expectancy and academic performance. J Pers 77: Travelbee J (1971) Interpersonal aspects of nursing, 2nd edn. University of Michigan, FA Davis Co

9 Support Care Cancer (2013) 21: Miaskowski C, Dodd M, West C, Schumacher K, Paul SM, Tripathy D, Koo P (2004) Randomized clinical trial of the effectiveness of a self-care intervention to improve cancer pain management. J Clin Oncol 22: West CM, Dodd MJ, Paul SM, Schumacher K, Tripathy D, Koo P, Miaskowski C (2003) The PRO-SELF(c): pain control program an effective approach for cancer pain management. Oncol Nurs Forum 30: Wahl AK, Rustoen T, Lerdal A, Hanestad BR, Knudsen O Jr, Moum T (2004) The Norwegian version of the Herth Hope Index (HHI-N): a psychometric study. Palliat Support Care 2: Benzein E, Berg A (2003) The Swedish version of Herth Hope Index an instrument for palliative care. Scand J Caring Sci 17: Herth K (1992) Abbreviated instrument to measure hope: development and psychometric evaluation. J Adv Nurs 17: Lin CC, Lai YL, Ward SE (2003) Effect of cancer pain on performance status, mood states, and level of hope among Taiwanese cancer patients. J Pain Symptom Manage 25: Rustoen T, Wahl AK, Hanestad BR, Lerdal A, Miaskowski C, Moum T (2003) Hope in the general Norwegian population, measured using the Herth Hope Index. Palliat Support Care 1: Bjelland I, Dahl AA, Haug TT, Neckelmann D (2002) The validity of the Hospital Anxiety and Depression Scale. An updated literature review. J Psychosom Res 52: Zigmond AS, Snaith RP (1983) The hospital anxiety and depression scale. Acta Psychiatr Scand 67: Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, Filiberti A, Flechtner H, Fleishman SB, de Haes JC et al (1993) The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst 85: Ferrell BR, Rhiner M, Ferrell BA (1993) Development and implementation of a pain education program. Cancer 72: Nijboer C, Triemstra M, Tempelaar R, Sanderman R, van den Bos GA (1999) Measuring both negative and positive reactions to giving care to cancer patients: psychometric qualities of the Caregiver Reaction Assessment (CRA). Soc Sci Med 48: Fletcher BA, Schumacher KL, Dodd M, Paul SM, Cooper BA, Lee K, West C, Aouizerat BE, Swift PS, Wara W, Miaskowski C (2009) Trajectories of fatigue in family caregivers of patients undergoing radiation therapy for prostate cancer. Res Nurs Health 32: Mazanec SR, Daly BJ, Douglas SL, Lipson AR (2011) Work productivity and health of informal caregivers of persons with advanced cancer. Res Nurs Health 34: Park CH, Shin DW, Choi JY, Kang J, Baek YJ, Mo HN, Lee MS, Park SJ, Park SM, Park S (2012) Determinants of the burden and positivity of family caregivers of terminally ill cancer patients in Korea. Psychooncology 21: Klepstad P, Loge JH, Borchgrevink PC, Mendoza TR, Cleeland CS, Kaasa S (2002) The Norwegian brief pain inventory questionnaire: translation and validation in cancer pain patients. J Pain Symptom Manage 24: Buccheri G, Ferrigno D, Tamburini M (1996) Karnofsky and ECOG performance status scoring in lung cancer: a prospective, longitudinal study of 536 patients from a single institution. Eur J Cancer 32A: Karnofsky DA, Abelmann WH, Craver LF, Burchenal JH (1948) The use of nitrogen mustards in the palliative treatment of carcinoma. Cancer 1: Mor V, Laliberte L, Morris JN, Wiemann M (1984) The Karnofsky Performance Status Scale. An examination of its reliability and validity in a research setting. Cancer 53: Schag CC, Heinrich RL, Ganz PA (1984) Karnofsky performance status revisited: reliability, validity, and guidelines. J Clin Oncol 2: Mechanic D (1974) Social structure and personal adaption: some neglected dimensions. In: Coelho GV, Hamburg DA, Adams JE (eds) Coping and adaption. Basic Books, New York, pp Herth K (1993) Hope in the family caregiver of terminally ill people. J Adv Nurs 18: Holtslander LF, Duggleby W, Williams AM, Wright KE (2005) The experience of hope for informal caregivers of palliative patients. J Palliat Care 21: Wennman-Larsen A, Tishelman C (2002) Advanced home care for cancer patients at the end of life: a qualitative study of hopes and expectations of family caregivers. Scand J Caring Sci 16: Duggleby W, Holtslander L, Kylma J, Duncan V, Hammond C, Williams A (2010) Metasynthesis of the hope experience of family caregivers of persons with chronic illness. Qual Health Res 20: Daly BJ, Douglas S, Lipson A, Foley H (2009) Needs of older caregivers of patients with advanced cancer. J Am Geriatr Soc 57(Suppl 2):S293 S Bachner YG, O'Rourke N, Carmel S (2007) Psychometric properties of a modified version of the Caregiver Reaction Assessment Scale measuring caregiving and post-caregiving reactions of caregivers of cancer patients. J Palliat Care 23: Gaugler JE, Hanna N, Linder J, Given CW, Tolbert V, Kataria R, Regine WF (2005) Cancer caregiving and subjective stress: a multisite, multi-dimensional analysis. Psychooncology 14: Grov EK, Eklund ML (2008) Reactions of primary caregivers of frail older people and people with cancer in the palliative phase living at home. J Adv Nurs 63: Park CH, Shin DW, Choi JY, Kang J, Baek YJ, Mo HN et al. (2010) Determinants of the burden and positivity of family caregivers of terminally ill cancer patients in Korea. Psycho-Oncology 21(3):