JOURNAL OF PALLIATIVE MEDICINE Volume 9, Number 4, 2006 © Mary Ann Liebert, Inc.
Caring for a Loved One with Advanced Cancer: Determinants of Psychological Distress in Family Caregivers SERGE DUMONT, Ph.D.,1 JEAN TURGEON, M.D., M.A,2 PIERRE ALLARD, M.D., Ph.D.,3 PIERRE GAGNON, M.D.,4 CÉCILE CHARBONNEAU, Ph.D.,5 and LUCIE VÉZINA, M.A.6
ABSTRACT Background: Family caregivers caring for a patient with terminal cancer may experience significant psychological distress. Objective: The purpose of this study was to determine the extent to which the family caregivers’ psychological distress is influenced by the patients’ performance status while taking into account individual characteristics of caregivers and their unmet needs. Methods: Two hundred twelve family caregivers were assigned to three cohorts according to the patient’s performance status, as measured by the Eastern Collaborative Oncology Group Functional Scale (ECOGS). Interview information was collected on the services and care provided, as well as on the caregivers’ characteristics and level of psychological distress. Results: Family caregivers’ psychosocial distress is strongly associated with the patients’ terminal disease progress and declined functioning. The level of psychological distress varies from 25.2 to 33.5 (p 0.0008) between the groups. Moreover, the percentage of caregivers with a high level of psychological distress varies from 41% to 62%, while this percentage is estimated at 19.2% in general population. A high distress index was significantly associated with the caregiver’s burden, the patient’s young age, the patient’s symptoms, the caregiver’s young age and gender, a poor perception of his/her health and dissatisfaction with emotional and tangible support. Conclusions: Family caregivers of patients in the advanced stages of cancer experience a high level of psychological distress, which increases significantly as the patient loses autonomy. Health care policies and programs need to be revisited in order to take the reality of these patients and their families into account.
1École
de service social, Université Laval, Centre de recherche en cancérologie, Université Laval, Québec, Canada. de médecine, Université Laval, Québec, Canada. 3Division of Palliative Care, University of Ottawa and Sister of Charity of Ottawa Health Service Partnership, Ottawa, Ontario, Canada. 4Faculté de pharmacie, Université Laval, Psychiatre, Centre hospitalier universitaire de Québec, Centre de recherche en cancérologie, Université Laval, Centre de recherche Université Laval-Robert-Giffard, Québec, Canada. 5Centre jeunesse de Québec, Québec, Canada. 6Unité de médecine familiale, Hôpital Laval, Québec, Canada. 2Faculté
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INTRODUCTION
B
UNITED KINGDOM with the hospice movement and the inspiration of Cicely Saunders1 and Elizabeth Kubler-Ross,2 palliative care promotes humanization of care and encourages the caring of patients in their natural milieu/environment. This philosophy is mirrored by the patients’ desire to stay home as long as possible, if adequate and sufficient care is available (Angus Reid Report cited by McWhinney et al.3). Furthermore, the palliative care movement promotes desinstitutionalization in favor of home care. Over the last decade, as community palliative care services become more available, an increasing number of individuals with cancer have chosen to die at home.4,5 Palliative care at home is recognized to require the help of dedicated caregivers supported by care teams.6 Informal caregivers may experience psychological morbidity (anxiety, depression) or burden.7 A growing literature suggests that caring for a terminally ill loved one is a difficult experience that may trigger distress among family caregivers.8–10 Characteristics of informal caregivers’ related to their psychological distress are age, state of health, relationship to the patient,7,11–13 and sense of competence and personal accomplishment.9,14,15 Informal caregiver distress is also related to patients’ characteristics such as the level of functional autonomy, type of cancer, and severity of symptoms.7,16–23 Other factors may also influence the psychological distress of family caregivers: the accessibility and availability of home care,24–26 social support,20,26–29 place of death,27,30 and financial burden.10,31–33 However, very little research exists that prospectively addresses the family caregiver’s psychological distress when providing end-of-life care for a close one. The goal of this study was to determine the extent to which the family caregivers’ psychological distress is influenced by the patients’ performance status while taking into account individual characteristics of caregivers and their unmet needs. EGINNING IN THE
METHODOLOGY Participants The population under study is defined as those members of a family who fulfil the role of main
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caregivers of a patient during the palliative phase of patients with cancer in the Québec City area. These families are supported by a palliative care team whether the patient lives at home, the hospital, or a hospice. Two hundred twelve family caregivers of individuals with terminal cancer were recruited in the Quebec City area to participate in a cross-sectional study. This study was approved by the Ethics Committee of the Maison Michel-Sarrazin Hospice. The family caregiver was identified by the patient themself as the person who was assuming the main responsibility for overseeing his or her daily care delivery. Three cohorts were formed according to the patient’s performance status, as measured according to the Eastern Collaborative Oncology Group Performance Scale (ECOGPS).34 The first cohort comprised caregivers who cared for a patient confined to a bed or chair less than 50% of waking hours (ECOGPS grade 2); the second cohort was made up of caregivers who cared for a patient confined to bed or chair 50% or more of the waking hours, but excluding 100% of the time (ECOGPS grade 3); and finally, the third cohort included caregivers of completely bedridden patients (ECOGPS grade 4).
Data collection Recruitment was conducted with the same procedures at eight local community service centers (Cente local de services communautaires [CLSC]), at the Maison Michel-Sarrazin Hospice, at ambulatory oncology clinics and at family clinics in the greater Quebec City area. Home care nurses, social workers. and family physicians identified potential participants and asked these persons if they are interested in the study. Those who were interested were provided with information over the telephone by a research assistant who was always the same person. Participants were scheduled for an initial interview of approximately 1 hour duration at either the patient’s or caregiver’s home, the hospice, the CLSC, or the hospital as soon as possible after verbal informed consent. Research interviews were conducted by four trained research assistants. Social and demographic information about the caregiver and the patient were collected. The caregiver’s psychological distress was evaluated using the Indice de détresse psychologique de Santé Québec (IDPESQ).35,36 This multidimensional in-
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dex, derived from the Psychiatric Symptoms Index,37 measures depression, anxiety, aggressiveness, and cognitive disorders with a strong internal consistency (Cronbach correlation 0.92).36,37 Data collection included the intensity of the patient’s symptoms according to the Symptom Distress Scale (SDS),38 caregiver’s burden,39 caregiver’s perceived state of health, satisfaction of need for help and care, perceived social support from family and friends40 and, perceived financial burden was also obtained. The Home Caregivers Need Survey (HCNS), developed by Hileman,41 was adapted for the purposes of this study. Participants, who cared for a patient with a functional status estimated at ECOGPS grade 2 or 3 during this first interview, were invited to be part of the second and/or the third cohort. In these particular cases, the follow-up was done by the clinicians in coordination with the research assistant. New research interviews were scheduled when the patients’ functional status declined to ECOGPS grade 3 or 4. Thus, some family caregivers participated in more than one research interview.
Data analysis Results of relevant measures were presented with mean and standard deviation for continuous variables and with percentages for categorical variables. The 2 statistic was used to compare psychological distress indices of family caregivers and those of the population of the province of Quebec. Family caregivers who had indices equal or greater than the upper quintile value of the Quebec population were classified as being in severe distress.37,42 The existence and strength of correlations or associations between the family caregiver’s psy-
TABLE 1.
DISTRIBUTION
ECOG performance status Grade 2a Grade 3b Grade 4c Total aConfinement
OF
chological distress and the independent variables were assessed according to the patient’s loss of autonomy as follows. Pearson’s product-moment correlation coefficient was used to assess the relationship between the psychological distress and other continuous variables, while the Student’s t test was used for analyzing categorical variables. At each level of the patient’s performance status (ECOGPS grade 2, 3, and 4), multiple regression analyses were performed to identify models that best explained the family caregiver’s psychological distress. Regression analyses were performed using a forward procedure with a level of significance of 0.15. Only those variables that were significant at 0.05 were retained. The data were analyzed using the statistical package program SAS version 8.2 (SAS Institute Inc., Cary, NC).
RESULTS A total of 212 family primary caregivers were interviewed. Fifty participated in two interviews and 7 in three. In other words, 212 caregivers had been part at least of one of the three planned in the research protocol, 54 had been part of two, and finally, 7 participated in the three cohorts. Thus, overall 273 interviews were conducted (Table 1). Patient’s setting of care at the time of interview was mainly at home (96%) when the patient’s performance status was ECOGPS grade 2. However, this figure decreased sharply, according to the decrease in the patient’s performance status. Eleven percent (11%) of the patients was at the hospital or hospice when their status was ECOGPS grade 3, and this was the case for 59 % of those with ECOGPS grade 4. Participants were mostly women (75.5%) living with their spouse (79.2%). The average age and
CAREGIVERS’ INTERVIEWS (n 273)
ACCORDING TO THE
PATIENT’S PERFORMANCE STATUS
One interview
Two interviews
Three interviews
74 71 67 212
18 36 54
7 7
to bed or chair less than 50% of waking hours to bed or chair 50% or more of waking hours but excluding 100% of time cConfinement to bed or chair 100% of waking hours ECOG, Eastern Collaborative Oncology Group. bConfinement
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CARING FOR A LOVED ONE WITH ADVANCED CANCER TABLE 2.
CHARACTERISTICS
OF
FAMILY CAREGIVERS
Characteristics Gender Relationship to patient
Lives with patient Marital status
Minor children Dependent adults Availability of psychological support
Female Male Spouse Father/mother Child Brother/sister Friend Other No Yes Single Married/spouse Separated/divorced Widower/widow Religious Yes No None 1 2 or more Yes No
Age (Range) Number of years of schooling (Range)
n 212
%
160 52 128 44 7 14 9 10 55 157 17 168 20 5 2 28 184 172 32 8 51 161 Average 57.3 (23–88) 12.3 (5–23)0
75.5 24.5 60.4 20.8 3.3 6.6 4.2 4.7 25.9 74.1 8.0 79.2 9.4 2.4 0.9 13.2 86.8 81.1 15.1 3.8 24.1 75.9 SD 12.3 3.7
SD, standard deviation.
years of schooling were 57.3 years and 12.3 years, respectively (Table 2). The majority of caregivers (74.1%) lived with the patient who was, in 60.4% of the cases, their spouse. Over half of the patients (55.2%) were men with a mean age of 65 years. The most common primary cancer sites were gastrointestinal (30.2%) and lung (28.3%). At the time of the baseline interview, the diagnosis had been known for an average duration of 22.6 months (median, 10 months).
Psychological distress of the caregivers The overall psychological distress score of family caregivers increased according to the deterioration in the patient’s performance status, from 25.2 (ECOGPS grade 2) to 28.0 (ECOGPS grade 3) and 33.5 (ECOGPS grade 4) (p 0.0008). A similar trend was observed for the depression, anxiety, and cognitive distress indices (p 0.05) (Fig. 1). The irritability index increased significantly only between ECOGPS grades 3 and 4 (p 0.03). The percentage of family caregivers with a high level of psychological distress was strongly associated with the patient’s performance status. This
percentage increased from 41.1%, 42.0%, and 61.7%, respectively, among those caring for patients with ECOGPS grade of 2, 3, and 4 (Fig. 2). According to the Quebec Health Survey conducted in 1998, 19.2 % of Quebecers between the ages of 44 years and 65 years had a high level of psychological distress.43
Factors associated with the psychological distress of family caregivers While many factors were significantly associated with distress among family caregivers, it is mainly the burden that is the most highly correlated with the intensity of their distress, regardless of the physical condition of the patient (Table 3). The presence of specific patient symptoms such as pain, dyspnea, diarrhea-vomiting, and delirium were not associated with caregiver distress. However, considered globally, the intensity of these symptoms were moderately and positively associated with distress. On the other hand, being a young caregiver or accompanying young patients was moderately associated with psychological distress when the patient was totally confined to bed or when death was approach-
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FIG. 1. Family caregivers’ psychological distress indices according to Eastern Collaborative Oncology Group (ECOG) performance status at time of interviews.
ing. Being a woman, lack of emotional support, perception of financial burden and loss of income, and finally, insufficient support from ones surrounding was weakly, but positively, related to psychological distress (Table 3).
The determinants of the caregiver’s psychological distress according to the changes in patient’s performance status In order to identify the principal determinants of caregiver psychological distress, a regression model was developed with those variables that were significantly related to psychological distress as determined by the correlation analysis. Results
confirmed that the factors, significantly associated with the psychological distress of family caregivers, differed according to patient performance status (Table 4). Among those caring for patients confined to bed less than 50% of waking hours (ECOGPS grade 2), these factors were the caregiver’s burden and female gender. At ECOGPS grade 3, caregivers’ psychological distress was associated with dissatisfaction with available support and poor perception of health. Among family caregivers caring for patients completely confined to bed (ECOGPS grade 4), the factors were the caregiver’s burden and the perceived support received from friends, the level of satisfaction with help, the caregiver’s age, and the patient’s age.
FIG. 2. Percentage of family caregivers presenting with a high level of psychological distress by patient performance status according to Eastern Collaborative Oncology Group (ECOG) performance status. Psychological distress is considered to be high above the 80th percentile distribution.
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CARING FOR A LOVED ONE WITH ADVANCED CANCER TABLE 3.
CORRELATION OF PSYCHOLOGICAL DISTRESS WITH PATIENT’S CHARACTERISTICS, CAREGIVER’S CHARACTERISTICS, AND CAREGIVERS’ UNMET NEEDS ACCORDING TO ECOGPS AT TIME OF INTERVIEWS ECOGPS 2 n
r
Patients’ characteristics Patient’s gendera Patient’s age Overall symptoms’ intensity
73 73 73
.— 0.137 0.337
Caregivers’ characteristics Caregivers’ gendera Caregivers’ age Self-perception of health Caregivers’ burden Perception of financial burden Perception of loss of income
73 73 73 40 71 72
Caregivers’ unmet needs Satisfaction with information Satisfaction with concrete help Satisfaction with emotional support Satisfaction with spiritual support Satisfaction with support received (overall score) Support from family Support from friends
ECOGPS 3 p
n
r
ECOGPS 4 p
n
r
p
0.242 0.247 0.004
88 88 87
.— 0.154 0.269
0.203 0.153 0.011
107 107 107
.— 0.367 0.129
0.954 0.0001 0.184
.— 0.066 0.288 0.605 0.075 0.012
0.006 0.576 0.013 0.0001 0.533 0.922
88 88 88 29 87 87
.— 0.230 0.289 0.580 0.227 0.261
0.337 0.031 0.006 0.001 0.034 0.014
107 106 105 49 103 104
.— 0.321 0.262 0.498 0.055 0.179
0.559 0.0008 0.007 0.0003 0.580 0.070
72 58 72
0.079 0.066 0.218
0.507 0.624 0.066
87 78 87
0.227 0.248 0.351
0.034 0.028 0.0008
106 99 107
0.087 0.213 0.246
0.376 0.035 0.011
59
0.104
0.433
69
0.005
0.968
91
0.275
0.008
72
0.131
0.271
87
0.312
0.003
107
0.240
0.013
71 69
0.048 0.019
0.690 0.877
87 78
0.150 0.193
0.166 0.091
107 102
0.172 0.271
0.076 0.006
r Pearson’s correlation coefficient. p probability value. n sample size. aFor patients’ and caregivers’ gender, Student t test was performed. ECOGPS, Eastern Collaborative Oncology Group Performance Scale.
DISCUSSION Overall, this study’s findings show that family caregivers of terminally ill cancer patients experience psychological distress that tends to increase along with the decline in patient’s mobility status. The psychological distress of family caregivers was markedly higher than among the general population of the province of Quebec, Canada.43 The results of the present study indicate that 40% to 60% of family caregivers who care for a loved one during the end of life experience a high level of psychological distress, especially as the patients level of autonomy diminishes. These results are a cause for concern. Recent studies highlighted that caregiver’s psychological morbidity was equal or greater than the patient’s.23,33 Prevalence of severe psychological distress among patients with cancer varies from 1% to 42%.44–46 Discrepancies in this matter are
attributable to a great variability of methods, severity threshold and diagnostic criterions. Previous research has revealed that the distress of the patient has an influence on the distress of the caregiver and vice versa.19,47 Kurtz and colleagues48 observed a correlation between the intensity of patient depression and caregiver depression. They noted that patient symptoms were strong predictors of patient depression, which in return predicted caregiver depression. In their study, the authors also determined that there was a continuous interrelation between changes in depressive state of both patients and caregivers. Finally, a recent meta-analysis conducted with 21 independent samples of patients with cancer and their caregivers confirmed the significant positive relationship between patients with cancer and caregivers’ psychological distress.23 Greater attention should be given to the family caregivers’ needs in order to address the factors that are likely to increase their level of dis-
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DUMONT ET AL. TABLE 4. EXPLANATORY VARIABLES ASSOCIATED WITH PSYCHOLOGICAL DISTRESS OF FAMILY CAREGIVERS ACCORDING TO ECOGPS AT TIMES OF INTERVIEWS
Variable
n
ECOGPS grade 2 Intercept Caregiver’s burden Caregiver’s sex
74
ECOGPS grade 3 Intercept Satisfaction with support received Self-perception of health
89
ECOGPS grade 4 Intercept Caregiver’s burden Support from friends Satisfaction with concrete help Caregiver’s age Patient’s age
Coefficienta ()
Standard error
95% CI
t value
p
0.66 1.01 10.97
4.09 0.25 3.47
9.02 to 7.71 0.51 to 1.52 3.87 to 18.09
0.16 4.08 3.16
0.87 0.0003 0.004
68.24 12.69
10.63 3.44
46.06 to 90.41 19.87 to 5.52
6.42 3.69
0.0001 0.001
6.35
2.80
126.41 0.67 1.01 6.78 0.45 0.36
18.33 0.18 0.28 2.44 0.17 0.14
0.50 to 12.20
2.27
110 89.42 0.30 1.59 11.70 0.80 0.66
to to to to to to
163.41 1.03 0.43 1.85 0.09 0.06
6.90 3.65 3.54 2.78 2.56 2.41
0.03
0.0001 0.0007 0.001 0.008 0.01 0.02
aThe mathematical weighting of the explanatory variables in the equation. ECOGPS, Eastern Collaborative Oncology Group Performance Scale.
tress. Caregivers should not be considered only as partners in caring but also as potential patients. Adjusting the delivery of services to the patient’s needs may reduce the risk of compromising the caregiver’s ability to care for the patient at home. Dumont et al.15 documented the protective effect that self-competence can provide to caregivers looking after a terminally ill patient. Self-competence may be bolstered by efficient psychosocial support and educational initiatives designed to better equip caregivers for the difficult situations they may face.49
Caregiver’s burden As reported by few previous studies,7,33 results from the current study has shown that the burden experienced by the caregiver is a determinant of the degree of psychological distress throughout the advanced phase of cancer. According to the conceptual framework developed by Dumont et al.15 the palliative care caregiver’s burden is a psychological experience which has two main components: the cognitive (appraisal) component and phenomenological (meaning) component. From one perspective, the cognitive component underscores the potential evaluation of perceived availability of help and support as a means to cope with the challenges posed by caring for a
loved one at the end of life. Access to adequate support provides the caregiver with a greater potential to fulfill his role. Feelings of control and competence help to protect against exhaustion and psychological distress. Also, the phenomenological component refers to a process of capturing the meaning of the caregiver’s experience. This process is closely linked to the quality of the relationship with the patient, other family members, as well as the care staff. These relationships contribute to the construction of a meaning, which is an important dimension of adapting to significant loss. Therefore, the intensity of the burden experienced by the caregiver is intimately tied to his subjective evaluation of the availability of resources, as well as the process of constructing a meaning to the accompanying experience.
Patient symptoms The strong relationship between psychological distress and the patient’s symptoms has been confirmed in several studies.7,18,19,48 In our study, this association was observed when patients’ functional status was estimated at ECOGPS-2 and 3, but not when patients had very poor functional status (ECOGPS 4) of which a majority stayed in a hospital or hospice during the terminal phase
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of their disease. Such observations may be partly explained by a sense of powerlessness on behalf of the caregiver when symptom management is not optimal at home. Results have also shown that the caregiver’s psychological distress was not associated with any specific symptom experienced by the patient. Rather, it was based on the impact of a combination of all the symptoms experienced by the patient. In line with these findings a recent study by Given et al.7 found a direct relationship between the number of patient symptoms and the level of depressive symptoms among family caregivers.
Age, gender, and health status Although young caregivers might be expected to be less vulnerable than older ones, this study reveals that they experienced higher psychological distress, especially as the death of their loved ones became imminent. Young caregivers may experience death as a very traumatic event adding to their familial and professional responsibilities.7,50 Consistent with the reports of others,7,14,18,9,50,51 this study found a higher level of psychological distress among female caregivers. This may be related to the fact that in addition to the many demands of caring for the patient, women also perform many household tasks. Hagedoorn et al.14 reported that women who perceived themselves as lacking confidence and/or competence in respect to caring for a loved one with cancer experience higher levels of distress than men. It would be interesting for future researcher to verify if women are more likely than men to delay the hospitalization of a loved one who is in the palliative stage of life. Last, as reported by others,11,12 the caregiver’s reporting of poor health was significantly associated with a high level of psychological distress. These observations suggest that monitoring caregiver needs may ultimately benefit patient care.
Financial constraints Moreover, as reported in other studies, the financial constraints experienced by the primary caregiver may trigger psychological distress.10,31–33 Family caregivers may have to take a leave without pay or even quit their jobs in order to meet patient’s needs. In addition to the loss of income, there are additional expenses for medications, supplies, technical support and home
care services. Developing policies to provide income security and employment protection for those who care for terminally ill family members is imperative. The new Canadian legislation entitled Compassionate Care Benefits is a step forward in ensuring that caregivers will be able to take temporary leave to support a family member reaching the end of his or her life.
Study limitations This study has some limitations. A potential limitation of this study is a selection bias that may have been introduced because clinicians may have avoided soliciting family caregivers to participate for fear of adding to their burden.52,53 Underrepresentation of caregivers with high levels of psychological distress may have occurred. Furthermore, all participants in this study benefited from a palliative care program. It is also important to note that when the study took place, less than 10% of the end-of-life patients in Canada had access to such programs. In addition, the sample was essentially comprised families of a francophone Quebec origin, which significantly limits the ethno-cultural sensitivity of the study conclusions. Also, the analysis did not take into consideration the level of income or financial resources of the participants, as such the representation of the social class can not be assured.
CONCLUSION Policy directions in our current health system are placing an increasing level of responsibility on families to care for family members at home. What level of burden is socially acceptable? According to this study conducted in a Quebec City area cohort, approximately half of family caregivers experience a high level of psychological distress when caring for someone terminally ill with cancer. The social costs related to the family caregiver’s burden are striking. Families caring for a terminally ill family member should be entitled to better support from our health care system under programs and policies targeting the care of the terminally. The psychological distress of caregivers may have a great negative impact expanding after the death of the loved one.28,54,55 Prevention of the family caregiver’s burden should become an integral part of good palliative care integrated into health policies for the terminally ill.
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ACKNOWLEDGMENTS This study was supported in part by a research grant from the Fonds québecois de la recherche sur la société et la culture (FQRSC), formerly the Conseil québecois de la recherche sociale (CQRS), and in part by a Fonds de la recherche en santé du Québec (FRSQ) infrastructure grant for palliative care research. Serge Dumont benefited from a Career Award from the Canadian Institutes of Health Research (CIHR) while this work was being conducted.
REFERENCES 1. Saunders C: The philosophy of terminal care. In: Saunders C (ed): The Management of Terminal Malignant Disease. Baltimore: Arnold Publishers, 1984, pp. 232–241. 2. Kubler-Ross E: On Death and Dying. New-York: Mcmillan, 1969. 3. McWhinney I, Bass M, Orr V: Factors associated with location of death (home or hospital) of patients referred to a palliative care team. CMAJ 1995;152: 361–367. 4. Costantini M, Camoirano E, Madeddu L, Bruzzi P, Verganelli E, Henriquet F: Palliative home care and place of death among cancer patients: A populationbased study. Palliat Med 1993;7:323–331. 5. Wilson DM: End of life preferences of Canadian senior citizens with caregiving experience. J Adv Nurs 2000;31:1416–1421. 6. Aranda SK, Hayman-White K: Home caregivers of the person with advanced cancer: An Australian perspective. Cancer Nurs 2001;24:300–307. 7. Given B, Wyatt G, Given C, Sherwood P, Gift A, DeVoss D, Rahbar M: Burden and depression among caregivers of patients with cancer at the end of life. Oncol Nurs Forum 2004;31:1105–1117. 8. Sales E: Psychosocial impact of the phase of cancer on the family: An update review. J Psychosoc Oncol 1991;9:1–18. 9. Nijboer C, Tempelaar R, Sanderman R, Triemstra M, Spruijt RJ, Bos GAvd: Cancer and caregiving: the impact on the caregiver’s health. Psychooncology 1998;7:3–13. 10. Lee C, Porteous L: Experiences of family caregiving among middle-aged Australia woman. Feminism Psychol 2002;12:79–96. 11. Cherny NI, Coyle N: Suffering in the advanced cancer patient: A definition and taxonomy. J Palliat Care 1994;10:57–70. 12. Vachon MLS: Psychosocial needs of patients and families. J Palliat Care 1998;14:49–56. 13. Fried TR, Bradley EH, O’Leary JR, Byers AL: Unmet desire for caregiver-patient communication and increased caregiver burden. J Am Geriatr Soc 2005; 53:59–65.
14. Hagedoorn M, Sanderman R, Buunk BTW: Failing in spousal caregiving: The ‘identity-relevant stress’ hypothesis to explain sex differences in caregiver distress. Br J Health Psychol 2002;7(Part 4):481–494. 15. Dumont S, Dugas M, Gagnon P, Lavoie H, Dugas L, Vanasse C. Le fardeau psychologique et émotionnel chez les aidants naturels qui accompagnent un malade en fin de vie. Les Cahiers de soins palliatifs 2000;2:17–48. 16. Ferrell BR, Ferrell BA, Rhiner M, Grant M: Family factors influencing cancer pain management. Postgrad Med J 1991;67(Suppl 2):S64–S69. 17. Ferrell BR, Rhiner M, Cohen MZ, Grant M: Pain as a metaphor for illness, Part I: Impact of cancer pain on family caregivers. Oncol Nurs Forum 1991;18:1303– 1308. 18. Kurtz ME, Given B, Kurtz JC, Given CW: The interaction of age, symptoms, and survival status on physical and mental health of patients with cancer and their families. Cancer 1994;74(7 Suppl):2071–2078. 19. Siegel K, Karus DG, Raveis VH, Christ GH, Mesagno FP: Depressive distress among the spouses of terminally ill cancer patients. Cancer Pract 1996;4:25–30. 20. De Conno F, Caraceni A, Groff L, Brunelli C, Donati I, Tamburini M, Ventafridda V: Effect of home care on the place of death of advanced cancer patients. Eur J Cancer 1996;32A:1142–1147. 21. Hodgson C, Higginson I, McDonnell M, Butters E: Family anxiety in advanced cancer: A multicentre prospective study in Ireland. Br J Cancer 1997;76: 1211–1214. 22. Andrews SC: Caregiver burden and symptom distress in people with cancer receiving hospice care. Oncol Nurs Forum 2001;28:1469–1474. 23. Hodges LJ, Humphris GM, Macfarlane G: A meta-analytic investigation of the relationship between the psychological distress of cancer patients and their carers. Soc Sci Med 2005;60:1–12. 24. Houts PS, Lipton A, Harvey HA, Simmonds MA, Bartholomew MJ: Predictors of grief among spouse of deseased cancer patients. J Psychosoc Oncol 1989;7: 113–126. 25. Fakhoury WKH, McCarthy M, Addington-Hall J: Carers’ health status: Is it associated with their evaluation of the quality of palliative care? Scand J Soc Med 1997;25:296–301. 26. Sharpe L, Butow P, Smith C, McConnell D, Clarke S: The relationship between available support, unmet needs and caregiver burden in patients with advanced cancer and their carers. Psychooncology 2005;14:102–114. 27. Cheng WC, Schuckers PL, Hauser G, Burch J, Emmett JG, Walker B, Law E, Wakefield D, Boyle D, Lee M, et al: Psychological needs of family caregivers of terminally ill patients. Psychol Rep 1994;75:1243–1250. 28. Kurtz ME, Kurtz JC, Given CW, Given B: Predictors of postbereavement depressive symptomatology among family caregivers of cancer patients. Support Care Cancer 1997;5:53–60. 29. Payne S, Smith P, Dean S: Identifying the concerns of
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30. 31. 32.
33.
34.
35.
36.
37.
38. 39.
40.
41.
42.
43.
44.
informal carers in palliative care. Palliat Med 1999;13:37–44. Dawson NJ: Need satisfaction in terminal care settings. Soc Sci Med 1991;32:83–87. Stommel M, Given CW, Given BA: The cost of cancer home care to families. Cancer 1993;71:1867–1874. Ferrell BR, Rhiner M, Shapiro B, Strause L: The family experience of cancer pain management in children. Cancer Pract 1994;2:441–446. Grunfeld E, Coyle D, Whelan T, Clinch J, Reyno L, Earle CC, Willan A, Viola R, Coristine M, Janz T, Glossop R: Family caregiver burden: Results of a longitudinal study of breast cancer patients and their principal caregivers. JAMA 2004;170:1795–1801. Bowling A: Measuring Disease: A Review of Disease-Specific Quality of Life Measurement Scales. Buckingham, Philadelphia, 1995. Préville M: La détresse psychologique : détermination de la fiabilité et de la validité de la mesure utilisée dans l’Enquête Santé Québec. Québec: Ministère de la Santé et des Services sociaux, 1992. Préville M: Étude de la validité et de la fiabilité de la mesure de détresse psychologique utilisée dans l’Enquête Santé Québec. Montréal: Université de Montréal: Les cahiers du GRIS, 1995, T95–01. Ilfeld FW, Jr: Further validation of a psychiatric symptom index in a normal population. Psychol Rep 1976;39:1215–1228. McCorkle R, Young K: Development of a symptom distress scale. Cancer Nurs 1978;1:373–378. Dumont S, Gagnon P, Charbonneau C: A new tool to assess primary caregivers’ burden in palliative care. Paper presented at: 18th Annual Meeting & Conference of the Canadian Association of Psychosocial Oncology, 2001; Winnipeg, Canada. Procidano ME, Heller K: Measures of perceived social support from friends and from family: Three validation studies. Am J Commun Psychol 1983;11:1–24. Hileman JW, Lackey NR, Hassanein R: Identifying the needs of home caregivers of patients with cancer. Onc Nurs Forum 1992;19:771–777. Gouvernement du Québec. Et la santé, ça va en 1992–1993? Rapport de l’Enquête sociale et de santé 1992–1993. Montréal, Ministère de la Santé et des Services sociaux, Volume 1, 1995. Gouvernement du Québec. Enquête sociale et de santé 1998, Chapitre 16 : Santé mentale. Institut de la Statistique. www.stat.gouv.qc.ca/publications/santé/ e_soc-sante98html (Last accessed May 20, 2006). Wilson KG, Chochinov HM, de Faye BJ, Breitbart W: Diagnosis and management of depression in palliative care. In: Handbook of Psychiatry in Palliative Medicine. New York: O.U. Press, 2000, pp. 25–49.
921
45. Chochinov HM: Depression in cancer patients. Lancet Oncol 2001;2:499–505. 46. Hotopf M, Chidgey J, Addington-Hall J, Ly KL: Depression in advanced disease: A systematic review Part 1. Prevalence and case finding. Palliat Med 2002;16:81–97. 47. Raveis VH, Karus DG, Siegel K: Correlates of depressive symptomatology among adult daughter caregivers of a parent with cancer. Cancer 1998;83: 1652–1663. 48. Kurtz ME, Kurtz JC, Given CW, Given B: Relationship of caregiver reactions and depression to cancer patients’ symptoms, functional states and depression— A longitudinal view. Soc Sci Med 1995;40:837–846. 49. Gagnon P, Charbonneau C, Allard P, Soulard C, Dumont S, Fillion L. Delirium in advanced cancer: A psychoeducational intervention for family caregivers. J Palliat Care 2002;18:253–261. 50. Goldstein NE, Concato J, Fried TR, Kasl SV, JohnsonHurzeler R, Bradley EH: Factors associated with caregiver burden among caregivers of terminally ill patients with cancer. J Palliat Care 2004;20:38–43. 51. Nijboer C, Triemstra M, Tempelaar R, Mulder M, Sanderman R, van den Bos GA: Patterns of caregiver experiences among partners of cancer patients. Gerontologist 2000;40:738–746. 52. Aranda SK: Changing paradigms in research: do we need to rethink the future? Prog Palliat Care 2000;8:193–197. 53. Grunfeld E, Zitzelsberger L, Coristine M, Aspelund F: Barriers and facilitators to enrollment in cancer clinical trials: Qualitative study of the perspectives of clinical research associates. Cancer 2002;95:1577–1583. 54. Schulz R, Beach SR, Lind B, Martire LM, Zdaniuk B, Hirsch C, Jackson S, Burton L: Involvement in caregiving and adjustment to death of a spouse: Findings from the caregiver health effects study. JAMA 2001;285:3123–3129. 55. Brazil K, Bedard M, Willison K: Correlates of health status for family caregivers in bereavement. J Palliat Med 2002;5:849–855.
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