JOURNAL OF PALLIATIVE MEDICINEVolume 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.,3PIERRE 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 sig-nificant psychological distress.

Objective: The purpose of this study was to determine the extent to which the family care-givers’ psychological distress is influenced by the patients’ performance status while takinginto account individual characteristics of caregivers and their unmet needs.

Methods: Two hundred twelve family caregivers were assigned to three cohorts accordingto the patient’s performance status, as measured by the Eastern Collaborative Oncology GroupFunctional Scale (ECOGS). Interview information was collected on the services and care pro-vided, 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 variesfrom 25.2 to 33.5 (p � 0.0008) between the groups. Moreover, the percentage of caregivers witha high level of psychological distress varies from 41% to 62%, while this percentage is esti-mated at 19.2% in general population. A high distress index was significantly associated withthe caregiver’s burden, the patient’s young age, the patient’s symptoms, the caregiver’s youngage and gender, a poor perception of his/her health and dissatisfaction with emotional andtangible support.

Conclusions: Family caregivers of patients in the advanced stages of cancer experience ahigh level of psychological distress, which increases significantly as the patient loses auton-omy. Health care policies and programs need to be revisited in order to take the reality ofthese patients and their families into account.

912

1École de service social, Université Laval, Centre de recherche en cancérologie, Université Laval, Québec, Canada.2Faculté de médecine, Université Laval, Québec, Canada.3Division of Palliative Care, University of Ottawa and Sister of Charity of Ottawa Health Service Partnership, Ot-

tawa, 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.

INTRODUCTION

BEGINNING IN THE UNITED KINGDOM with thehospice movement and the inspiration of

Cicely Saunders1 and Elizabeth Kubler-Ross,2

palliative care promotes humanization of careand encourages the caring of patients in their nat-ural milieu/environment. This philosophy is mir-rored by the patients’ desire to stay home as longas possible, if adequate and sufficient care isavailable (Angus Reid Report cited by McWhin-ney et al.3). Furthermore, the palliative caremovement promotes desinstitutionalization in fa-vor of home care. Over the last decade, as com-munity palliative care services become moreavailable, an increasing number of individualswith cancer have chosen to die at home.4,5 Pal-liative care at home is recognized to require thehelp of dedicated caregivers supported by careteams.6 Informal caregivers may experience psy-chological morbidity (anxiety, depression) or bur-den.7 A growing literature suggests that caringfor a terminally ill loved one is a difficult experi-ence that may trigger distress among family care-givers.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 accom-plishment.9,14,15

Informal caregiver distress is also related to pa-tients’ characteristics such as the level of func-tional autonomy, type of cancer, and severity ofsymptoms.7,16–23 Other factors may also influencethe psychological distress of family caregivers:the accessibility and availability of homecare,24–26 social support,20,26–29 place of death,27,30

and financial burden.10,31–33 However, very littleresearch exists that prospectively addresses thefamily caregiver’s psychological distress whenproviding end-of-life care for a close one.

The goal of this study was to determine the ex-tent to which the family caregivers’ psychologicaldistress is influenced by the patients’ performancestatus while taking into account individual char-acteristics of caregivers and their unmet needs.

METHODOLOGY

Participants

The population under study is defined as thosemembers of a family who fulfil the role of main

caregivers of a patient during the palliative phaseof patients with cancer in the Québec City area.These families are supported by a palliative careteam whether the patient lives at home, the hos-pital, or a hospice.

Two hundred twelve family caregivers of in-dividuals with terminal cancer were recruited inthe Quebec City area to participate in a cross-sec-tional study. This study was approved by theEthics Committee of the Maison Michel-SarrazinHospice. The family caregiver was identified bythe patient themself as the person who was as-suming the main responsibility for overseeing hisor her daily care delivery. Three cohorts wereformed according to the patient’s performancestatus, as measured according to the Eastern Col-laborative Oncology Group Performance Scale(ECOGPS).34

The first cohort comprised caregivers whocared for a patient confined to a bed or chair lessthan 50% of waking hours (ECOGPS grade 2); thesecond cohort was made up of caregivers whocared 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, thethird cohort included caregivers of completelybedridden patients (ECOGPS grade 4).

Data collection

Recruitment was conducted with the same procedures at eight local community service cen-ters (Cente local de services communautaires[CLSC]), at the Maison Michel-Sarrazin Hospice,at ambulatory oncology clinics and at family clin-ics in the greater Quebec City area. Home carenurses, social workers. and family physiciansidentified potential participants and asked thesepersons if they are interested in the study. Thosewho were interested were provided with infor-mation over the telephone by a research assistantwho was always the same person. Participantswere scheduled for an initial interview of ap-proximately 1 hour duration at either the pa-tient’s or caregiver’s home, the hospice, the CLSC,or the hospital as soon as possible after verbal in-formed consent. Research interviews were con-ducted by four trained research assistants. Socialand demographic information about the care-giver and the patient were collected. The care-giver’s psychological distress was evaluated us-ing the Indice de détresse psychologique de SantéQuébec (IDPESQ).35,36 This multidimensional in-

CARING FOR A LOVED ONE WITH ADVANCED CANCER 913

dex, derived from the Psychiatric Symptoms In-dex,37 measures depression, anxiety, aggressive-ness, and cognitive disorders with a strong in-ternal consistency (Cronbach correlation � �0.92).36,37 Data collection included the intensity ofthe patient’s symptoms according to the Symp-tom Distress Scale (SDS),38 caregiver’s burden,39

caregiver’s perceived state of health, satisfactionof need for help and care, perceived social sup-port from family and friends40 and, perceived fi-nancial burden was also obtained. The HomeCaregivers Need Survey (HCNS), developed byHileman,41 was adapted for the purposes of thisstudy.

Participants, who cared for a patient with afunctional status estimated at ECOGPS grade 2or 3 during this first interview, were invited to bepart of the second and/or the third cohort. Inthese particular cases, the follow-up was done bythe clinicians in coordination with the researchassistant. New research interviews were sched-uled when the patients’ functional status declinedto ECOGPS grade 3 or 4. Thus, some family care-givers participated in more than one research in-terview.

Data analysis

Results of relevant measures were presentedwith mean and standard deviation for continu-ous variables and with percentages for categori-cal variables. The �2 statistic was used to comparepsychological distress indices of family care-givers and those of the population of the provinceof Quebec. Family caregivers who had indicesequal or greater than the upper quintile value ofthe Quebec population were classified as being insevere distress.37,42

The existence and strength of correlations orassociations between the family caregiver’s psy-

chological distress and the independent variableswere assessed according to the patient’s loss ofautonomy as follows. Pearson’s product-momentcorrelation coefficient was used to assess the re-lationship between the psychological distress andother continuous variables, while the Student’s ttest was used for analyzing categorical variables.

At each level of the patient’s performance sta-tus (ECOGPS grade 2, 3, and 4), multiple regres-sion analyses were performed to identify modelsthat best explained the family caregiver’s psycho-logical distress. Regression analyses were per-formed using a forward procedure with a level ofsignificance of 0.15. Only those variables that weresignificant at 0.05 were retained. The data wereanalyzed using the statistical package programSAS version 8.2 (SAS Institute Inc., Cary, NC).

RESULTS

A total of 212 family primary caregivers wereinterviewed. Fifty participated in two interviewsand 7 in three. In other words, 212 caregivers hadbeen part at least of one of the three planned inthe 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 ofinterview was mainly at home (96%) when thepatient’s performance status was ECOGPS grade2. However, this figure decreased sharply, ac-cording to the decrease in the patient’s perfor-mance status. Eleven percent (11%) of the patientswas at the hospital or hospice when their statuswas ECOGPS grade 3, and this was the case for59 % of those with ECOGPS grade 4.

Participants were mostly women (75.5%) livingwith their spouse (79.2%). The average age and

DUMONT ET AL.914

TABLE 1. DISTRIBUTION OF CAREGIVERS’ INTERVIEWS (n � 273) ACCORDING TO THE PATIENT’S PERFORMANCE STATUS

One Two ThreeECOG performance status interview interviews interviews

Grade 2a 74Grade 3b 71 18Grade 4c 67 36 7Total 212 54 7

aConfinement to bed or chair less than 50% of waking hoursbConfinement to bed or chair 50% or more of waking hours but excluding 100% of timecConfinement to bed or chair 100% of waking hoursECOG, Eastern Collaborative Oncology Group.

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 witha mean age of 65 years. The most common pri-mary cancer sites were gastrointestinal (30.2%)and lung (28.3%). At the time of the baseline interview, the diagnosis had been known for anaverage duration of 22.6 months (median, 10months).

Psychological distress of the caregivers

The overall psychological distress score of fam-ily caregivers increased according to the deterio-ration in the patient’s performance status, from25.2 (ECOGPS grade 2) to 28.0 (ECOGPS grade 3)and 33.5 (ECOGPS grade 4) (p � 0.0008). A simi-lar trend was observed for the depression, anx-iety, and cognitive distress indices (p � 0.05) (Fig.1). The irritability index increased significantlyonly between ECOGPS grades 3 and 4 (p � 0.03).

The percentage of family caregivers with a highlevel of psychological distress was strongly asso-ciated with the patient’s performance status. This

percentage increased from 41.1%, 42.0%, and61.7%, respectively, among those caring for pa-tients with ECOGPS grade of 2, 3, and 4 (Fig. 2).According to the Quebec Health Survey con-ducted in 1998, 19.2 % of Quebecers between theages of 44 years and 65 years had a high level ofpsychological distress.43

Factors associated with the psychological distressof family caregivers

While many factors were significantly associ-ated with distress among family caregivers, it ismainly the burden that is the most highly corre-lated with the intensity of their distress, regard-less of the physical condition of the patient (Table3). The presence of specific patient symptomssuch as pain, dyspnea, diarrhea-vomiting, anddelirium were not associated with caregiver dis-tress. However, considered globally, the intensityof these symptoms were moderately and posi-tively associated with distress. On the other hand,being a young caregiver or accompanying youngpatients was moderately associated with psy-chological distress when the patient was totallyconfined to bed or when death was approach-

CARING FOR A LOVED ONE WITH ADVANCED CANCER 915

TABLE 2. CHARACTERISTICS OF FAMILY CAREGIVERS

Characteristics n � 212 %

Gender Female 160 75.5Male 52 24.5

Relationship to patient Spouse 128 60.4Father/mother 44 20.8Child 7 3.3Brother/sister 14 6.6Friend 9 4.2Other 10 4.7

Lives with patient No 55 25.9Yes 157 74.1

Marital status Single 17 8.0Married/spouse 168 79.2Separated/divorced 20 9.4Widower/widow 5 2.4Religious 2 0.9

Minor children Yes 28 13.2No 184 86.8

Dependent adults None 172 81.11 32 15.12 or more 8 3.8

Availability of Yes 51 24.1psychological support No 161 75.9

Average SDAge (Range) 57.3 (23–88) � 12.3Number of years of schooling (Range) 12.3 (5–23)0 � 3.7

SD, standard deviation.

ing. Being a woman, lack of emotional support,perception of financial burden and loss of income,and finally, insufficient support from ones sur-rounding was weakly, but positively, related topsychological distress (Table 3).

The determinants of the caregiver’s psychologicaldistress according to the changes in patient’sperformance status

In order to identify the principal determinants ofcaregiver psychological distress, a regressionmodel was developed with those variables thatwere significantly related to psychological distressas determined by the correlation analysis. Results

confirmed that the factors, significantly associatedwith the psychological distress of family care-givers, differed according to patient performancestatus (Table 4). Among those caring for patientsconfined to bed less than 50% of waking hours(ECOGPS grade 2), these factors were the care-giver’s burden and female gender. At ECOGPSgrade 3, caregivers’ psychological distress was as-sociated with dissatisfaction with available supportand poor perception of health. Among family care-givers caring for patients completely confined tobed (ECOGPS grade 4), the factors were the care-giver’s burden and the perceived support receivedfrom friends, the level of satisfaction with help, thecaregiver’s age, and the patient’s age.

DUMONT ET AL.916

FIG. 1. Family caregivers’ psychological distress indices according to Eastern Collaborative Oncology Group (ECOG)performance status at time of interviews.

FIG. 2. Percentage of family caregivers presenting with a high level of psychological distress by patient performancestatus according to Eastern Collaborative Oncology Group (ECOG) performance status. Psychological distress is con-sidered to be high above the 80th percentile distribution.

DISCUSSION

Overall, this study’s findings show that familycaregivers of terminally ill cancer patients expe-rience psychological distress that tends to in-crease along with the decline in patient’s mobil-ity status. The psychological distress of familycaregivers was markedly higher than among thegeneral population of the province of Quebec,Canada.43 The results of the present study indi-cate that 40% to 60% of family caregivers whocare for a loved one during the end of life expe-rience a high level of psychological distress, es-pecially as the patients level of autonomy dimin-ishes.

These results are a cause for concern. Recentstudies highlighted that caregiver’s psychologicalmorbidity was equal or greater than the pa-tient’s.23,33 Prevalence of severe psychologicaldistress among patients with cancer varies from1% 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 distressof the patient has an influence on the distress ofthe caregiver and vice versa.19,47 Kurtz and col-leagues48 observed a correlation between the in-tensity of patient depression and caregiver de-pression. They noted that patient symptoms werestrong predictors of patient depression, which inreturn predicted caregiver depression. In theirstudy, the authors also determined that there wasa continuous interrelation between changes in de-pressive state of both patients and caregivers. Fi-nally, a recent meta-analysis conducted with 21independent samples of patients with cancer andtheir caregivers confirmed the significant positiverelationship between patients with cancer andcaregivers’ psychological distress.23

Greater attention should be given to the fam-ily caregivers’ needs in order to address the fac-tors that are likely to increase their level of dis-

CARING FOR A LOVED ONE WITH ADVANCED CANCER 917

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 ECOGPS 3 ECOGPS 4

n r p n r p n r p

Patients’ characteristicsPatient’s gendera 73 .— 0.242 88 .— 0.203 107 .— 0.954Patient’s age 73 0.137 0.247 88 �0.154 0.153 107 �0.367 0.0001Overall symptoms’ intensity 73 0.337 0.004 87 0.269 0.011 107 0.129 0.184

Caregivers’ characteristicsCaregivers’ gendera 73 .— 0.006 88 .— 0.337 107 .— 0.559Caregivers’ age 73 �0.066 0.576 88 �0.230 0.031 106 �0.321 0.0008Self-perception of health 73 �0.288 0.013 88 �0.289 0.006 105 �0.262 0.007Caregivers’ burden 40 0.605 �0.0001 29 0.580 0.001 49 0.498 0.0003Perception of financial burden 71 0.075 0.533 87 0.227 0.034 103 �0.055 0.580Perception of loss of income 72 0.012 0.922 87 0.261 0.014 104 0.179 0.070

Caregivers’ unmet needsSatisfaction with information 72 �0.079 0.507 87 �0.227 0.034 106 �0.087 0.376Satisfaction with concrete help 58 �0.066 0.624 78 �0.248 0.028 99 �0.213 0.035Satisfaction with emotional 72 �0.218 0.066 87 �0.351 0.0008 107 �0.246 0.011

supportSatisfaction with spiritual 59 0.104 0.433 69 �0.005 0.968 91 �0.275 0.008

supportSatisfaction with support 72 �0.131 0.271 87 �0.312 0.003 107 �0.240 0.013

received (overall score)Support from family 71 0.048 0.690 87 �0.150 0.166 107 �0.172 0.076Support from friends 69 0.019 0.877 78 �0.193 0.091 102 �0.271 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.

tress. Caregivers should not be considered onlyas partners in caring but also as potential patients.Adjusting the delivery of services to the patient’sneeds may reduce the risk of compromising thecaregiver’s ability to care for the patient at home.Dumont et al.15 documented the protective effectthat self-competence can provide to caregiverslooking after a terminally ill patient. Self-compe-tence may be bolstered by efficient psychosocialsupport and educational initiatives designed tobetter equip caregivers for the difficult situationsthey may face.49

Caregiver’s burden

As reported by few previous studies,7,33 resultsfrom the current study has shown that the bur-den experienced by the caregiver is a determinantof the degree of psychological distress through-out the advanced phase of cancer. According tothe conceptual framework developed by Dumontet al.15 the palliative care caregiver’s burden is apsychological experience which has two maincomponents: the cognitive (appraisal) componentand phenomenological (meaning) component.From one perspective, the cognitive componentunderscores the potential evaluation of perceivedavailability of help and support as a means tocope with the challenges posed by caring for a

loved one at the end of life. Access to adequatesupport provides the caregiver with a greater po-tential to fulfill his role. Feelings of control andcompetence help to protect against exhaustionand psychological distress. Also, the phenome-nological component refers to a process of cap-turing the meaning of the caregiver’s experience.This process is closely linked to the quality of therelationship with the patient, other family mem-bers, as well as the care staff. These relationshipscontribute to the construction of a meaning,which is an important dimension of adapting tosignificant loss. Therefore, the intensity of theburden experienced by the caregiver is intimatelytied to his subjective evaluation of the availabil-ity of resources, as well as the process of con-structing a meaning to the accompanying experi-ence.

Patient symptoms

The strong relationship between psychologicaldistress and the patient’s symptoms has been con-firmed in several studies.7,18,19,48 In our study,this association was observed when patients’functional status was estimated at ECOGPS-2 and3, but not when patients had very poor functionalstatus (ECOGPS 4) of which a majority stayed ina hospital or hospice during the terminal phase

DUMONT ET AL.918

TABLE 4. EXPLANATORY VARIABLES ASSOCIATED WITH PSYCHOLOGICAL DISTRESS

OF FAMILY CAREGIVERS ACCORDING TO ECOGPS AT TIMES OF INTERVIEWS

Coefficienta Standard 95%Variable n (�) error CI t value p

ECOGPS grade 2 74Intercept �0.66 4.09 �9.02 to 7.71 �0.16 0.87Caregiver’s burden 1.01 0.25 0.51 to 1.52 4.08 0.0003Caregiver’s sex 10.97 3.47 3.87 to 18.09 3.16 0.004

ECOGPS grade 3 89Intercept 68.24 10.63 46.06 to 90.41 6.42 �0.0001Satisfaction with �12.69 3.44 �19.87 to �5.52 �3.69 0.001

support receivedSelf-perception of 6.35 2.80 0.50 to 12.20 2.27 0.03

health

ECOGPS grade 4 110Intercept 126.41 18.33 89.42 to 163.41 6.90 �0.0001Caregiver’s burden 0.67 0.18 0.30 to 1.03 3.65 0.0007Support from friends �1.01 0.28 �1.59 to �0.43 �3.54 0.001Satisfaction with concrete help �6.78 2.44 �11.70 to �1.85 �2.78 0.008Caregiver’s age �0.45 �0.17 �0.80 to �0.09 �2.56 0.01Patient’s age �0.36 �0.14 �0.66 to �0.06 �2.41 0.02

aThe mathematical weighting of the explanatory variables in the equation.ECOGPS, Eastern Collaborative Oncology Group Performance Scale.

of their disease. Such observations may be partlyexplained by a sense of powerlessness on behalfof the caregiver when symptom management isnot optimal at home. Results have also shownthat the caregiver’s psychological distress was notassociated with any specific symptom experi-enced by the patient. Rather, it was based on theimpact of a combination of all the symptoms ex-perienced by the patient. In line with these find-ings a recent study by Given et al.7 found a di-rect relationship between the number of patientsymptoms and the level of depressive symptomsamong family caregivers.

Age, gender, and health status

Although young caregivers might be expectedto be less vulnerable than older ones, this studyreveals that they experienced higher psychologi-cal distress, especially as the death of their lovedones became imminent. Young caregivers mayexperience death as a very traumatic eventadding to their familial and professional respon-sibilities.7,50

Consistent with the reports of others,7,14,18,9,50,51

this study found a higher level of psychologicaldistress among female caregivers. This may be re-lated to the fact that in addition to the many de-mands of caring for the patient, women also per-form many household tasks. Hagedoorn et al.14

reported that women who perceived themselvesas lacking confidence and/or competence in re-spect to caring for a loved one with cancer expe-rience higher levels of distress than men. It wouldbe interesting for future researcher to verify ifwomen are more likely than men to delay the hos-pitalization of a loved one who is in the palliativestage of life. Last, as reported by others,11,12 thecaregiver’s reporting of poor health was signifi-cantly associated with a high level of psycholog-ical distress. These observations suggest that mon-itoring caregiver needs may ultimately benefitpatient care.

Financial constraints

Moreover, as reported in other studies, the financial constraints experienced by the pri-mary caregiver may trigger psychological dis-tress.10,31–33 Family caregivers may have to takea leave without pay or even quit their jobs in or-der to meet patient’s needs. In addition to the lossof income, there are additional expenses for med-ications, supplies, technical support and home

care services. Developing policies to provide in-come security and employment protection forthose who care for terminally ill family membersis imperative. The new Canadian legislation en-titled Compassionate Care Benefits is a step for-ward in ensuring that caregivers will be able totake temporary leave to support a family mem-ber reaching the end of his or her life.

Study limitations

This study has some limitations. A potentiallimitation of this study is a selection bias that mayhave been introduced because clinicians mayhave avoided soliciting family caregivers to par-ticipate for fear of adding to their burden.52,53 Un-derrepresentation of caregivers with high levelsof psychological distress may have occurred. Fur-thermore, all participants in this study benefitedfrom a palliative care program. It is also impor-tant to note that when the study took place, lessthan 10% of the end-of-life patients in Canada hadaccess to such programs. In addition, the samplewas essentially comprised families of a fran-cophone Quebec origin, which significantly lim-its the ethno-cultural sensitivity of the study con-clusions. Also, the analysis did not take intoconsideration the level of income or financial re-sources of the participants, as such the represen-tation of the social class can not be assured.

CONCLUSION

Policy directions in our current health systemare placing an increasing level of responsibility onfamilies to care for family members at home. Whatlevel of burden is socially acceptable? Accordingto this study conducted in a Quebec City area co-hort, approximately half of family caregivers ex-perience a high level of psychological distresswhen caring for someone terminally ill with can-cer. The social costs related to the family care-giver’s burden are striking. Families caring for aterminally ill family member should be entitled tobetter support from our health care system underprograms and policies targeting the care of the ter-minally. The psychological distress of caregiversmay have a great negative impact expanding af-ter the death of the loved one.28,54,55 Prevention ofthe family caregiver’s burden should become anintegral part of good palliative care integrated intohealth policies for the terminally ill.

CARING FOR A LOVED ONE WITH ADVANCED CANCER 919

ACKNOWLEDGMENTS

This study was supported in part by a researchgrant from the Fonds québecois de la recherchesur la société et la culture (FQRSC), formerly theConseil québecois de la recherche sociale (CQRS),and in part by a Fonds de la recherche en santédu Québec (FRSQ) infrastructure grant for pal-liative care research. Serge Dumont benefitedfrom a Career Award from the Canadian Insti-tutes of Health Research (CIHR) while this workwas being conducted.

REFERENCES

1. Saunders C: The philosophy of terminal care. In: Saun-ders C (ed): The Management of Terminal Malignant Dis-ease. 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 withlocation of death (home or hospital) of patients re-ferred 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 andplace of death among cancer patients: A population-based study. Palliat Med 1993;7:323–331.

5. Wilson DM: End of life preferences of Canadian se-nior citizens with caregiving experience. J Adv Nurs2000;31:1416–1421.

6. Aranda SK, Hayman-White K: Home caregivers of theperson with advanced cancer: An Australian per-spective. Cancer Nurs 2001;24:300–307.

7. Given B, Wyatt G, Given C, Sherwood P, Gift A, De-Voss D, Rahbar M: Burden and depression amongcaregivers 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 onthe family: An update review. J Psychosoc Oncol1991;9:1–18.

9. Nijboer C, Tempelaar R, Sanderman R, Triemstra M,Spruijt RJ, Bos GAvd: Cancer and caregiving: the im-pact on the caregiver’s health. Psychooncology1998;7:3–13.

10. Lee C, Porteous L: Experiences of family caregivingamong middle-aged Australia woman. FeminismPsychol 2002;12:79–96.

11. Cherny NI, Coyle N: Suffering in the advanced can-cer patient: A definition and taxonomy. J Palliat Care1994;10:57–70.

12. Vachon MLS: Psychosocial needs of patients and fam-ilies. J Palliat Care 1998;14:49–56.

13. Fried TR, Bradley EH, O’Leary JR, Byers AL: Unmetdesire for caregiver-patient communication and in-creased caregiver burden. J Am Geriatr Soc 2005;53:59–65.

14. Hagedoorn M, Sanderman R, Buunk BTW: Failing inspousal caregiving: The ‘identity-relevant stress’ hy-pothesis to explain sex differences in caregiver dis-tress. 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 émotionnelchez les aidants naturels qui accompagnent unmalade en fin de vie. Les Cahiers de soins palliatifs2000;2:17–48.

16. Ferrell BR, Ferrell BA, Rhiner M, Grant M: Family fac-tors influencing cancer pain management. PostgradMed J 1991;67(Suppl 2):S64–S69.

17. Ferrell BR, Rhiner M, Cohen MZ, Grant M: Pain as ametaphor for illness, Part I: Impact of cancer pain onfamily caregivers. Oncol Nurs Forum 1991;18:1303–1308.

18. Kurtz ME, Given B, Kurtz JC, Given CW: The inter-action of age, symptoms, and survival status on phys-ical and mental health of patients with cancer andtheir families. Cancer 1994;74(7 Suppl):2071–2078.

19. Siegel K, Karus DG, Raveis VH, Christ GH, MesagnoFP: Depressive distress among the spouses of termi-nally ill cancer patients. Cancer Pract 1996;4:25–30.

20. De Conno F, Caraceni A, Groff L, Brunelli C, DonatiI, Tamburini M, Ventafridda V: Effect of home careon the place of death of advanced cancer patients. EurJ Cancer 1996;32A:1142–1147.

21. Hodgson C, Higginson I, McDonnell M, Butters E:Family anxiety in advanced cancer: A multicentreprospective study in Ireland. Br J Cancer 1997;76:1211–1214.

22. Andrews SC: Caregiver burden and symptom dis-tress in people with cancer receiving hospice care. On-col Nurs Forum 2001;28:1469–1474.

23. Hodges LJ, Humphris GM, Macfarlane G: A meta-an-alytic investigation of the relationship between thepsychological distress of cancer patients and their car-ers. Soc Sci Med 2005;60:1–12.

24. Houts PS, Lipton A, Harvey HA, Simmonds MA,Bartholomew MJ: Predictors of grief among spouse ofdeseased cancer patients. J Psychosoc Oncol 1989;7:113–126.

25. Fakhoury WKH, McCarthy M, Addington-Hall J: Car-ers’ health status: Is it associated with their evalua-tion of the quality of palliative care? Scand J Soc Med1997;25:296–301.

26. Sharpe L, Butow P, Smith C, McConnell D, Clarke S:The relationship between available support, unmetneeds and caregiver burden in patients with ad-vanced cancer and their carers. Psychooncology2005;14:102–114.

27. Cheng WC, Schuckers PL, Hauser G, Burch J, EmmettJG, Walker B, Law E, Wakefield D, Boyle D, Lee M,et al: Psychological needs of family caregivers of ter-minally ill patients. Psychol Rep 1994;75:1243–1250.

28. Kurtz ME, Kurtz JC, Given CW, Given B: Predictorsof postbereavement depressive symptomatologyamong family caregivers of cancer patients. SupportCare Cancer 1997;5:53–60.

29. Payne S, Smith P, Dean S: Identifying the concerns of

DUMONT ET AL.920

informal carers in palliative care. Palliat Med1999;13:37–44.

30. Dawson NJ: Need satisfaction in terminal care set-tings. Soc Sci Med 1991;32:83–87.

31. Stommel M, Given CW, Given BA: The cost of cancerhome care to families. Cancer 1993;71:1867–1874.

32. Ferrell BR, Rhiner M, Shapiro B, Strause L: The fam-ily experience of cancer pain management in children.Cancer Pract 1994;2:441–446.

33. Grunfeld E, Coyle D, Whelan T, Clinch J, Reyno L,Earle CC, Willan A, Viola R, Coristine M, Janz T, Glos-sop R: Family caregiver burden: Results of a longitu-dinal study of breast cancer patients and their prin-cipal caregivers. JAMA 2004;170:1795–1801.

34. Bowling A: Measuring Disease: A Review of Disease-Spe-cific Quality of Life Measurement Scales. Buckingham,Philadelphia, 1995.

35. Préville M: La détresse psychologique : détermination dela fiabilité et de la validité de la mesure utilisée dans l’En-quête Santé Québec. Québec: Ministère de la Santé etdes Services sociaux, 1992.

36. Préville M: Étude de la validité et de la fiabilité de lamesure de détresse psychologique utilisée dans l’EnquêteSanté Québec. Montréal: Université de Montréal: Lescahiers du GRIS, 1995, T95–01.

37. Ilfeld FW, Jr: Further validation of a psychiatric symp-tom index in a normal population. Psychol Rep1976;39:1215–1228.

38. McCorkle R, Young K: Development of a symptomdistress scale. Cancer Nurs 1978;1:373–378.

39. Dumont S, Gagnon P, Charbonneau C: A new tool toassess primary caregivers’ burden in palliative care.Paper presented at: 18th Annual Meeting & Confer-ence of the Canadian Association of Psychosocial On-cology, 2001; Winnipeg, Canada.

40. Procidano ME, Heller K: Measures of perceived so-cial support from friends and from family: Three val-idation studies. Am J Commun Psychol 1983;11:1–24.

41. Hileman JW, Lackey NR, Hassanein R: Identifying theneeds of home caregivers of patients with cancer. OncNurs Forum 1992;19:771–777.

42. Gouvernement du Québec. Et la santé, ça va en1992–1993? Rapport de l’Enquête sociale et de santé1992–1993. Montréal, Ministère de la Santé et des Ser-vices sociaux, Volume 1, 1995.

43. Gouvernement du Québec. Enquête sociale et de santé1998, Chapitre 16 : Santé mentale. Institut de la Sta-tistique. �www.stat.gouv.qc.ca/publications/santé/e_soc-sante98html� (Last accessed May 20, 2006).

44. Wilson KG, Chochinov HM, de Faye BJ, Breitbart W:Diagnosis and management of depression in pallia-tive care. In: Handbook of Psychiatry in Palliative Medi-cine. New York: O.U. Press, 2000, pp. 25–49.

45. Chochinov HM: Depression in cancer patients. LancetOncol 2001;2:499–505.

46. Hotopf M, Chidgey J, Addington-Hall J, Ly KL: De-pression in advanced disease: A systematic reviewPart 1. Prevalence and case finding. Palliat Med2002;16:81–97.

47. Raveis VH, Karus DG, Siegel K: Correlates of de-pressive symptomatology among adult daughtercaregivers of a parent with cancer. Cancer 1998;83:1652–1663.

48. Kurtz ME, Kurtz JC, Given CW, Given B: Relationshipof caregiver reactions and depression to cancer pa-tients’ symptoms, functional states and depression—A longitudinal view. Soc Sci Med 1995;40:837–846.

49. Gagnon P, Charbonneau C, Allard P, Soulard C, Du-mont S, Fillion L. Delirium in advanced cancer: A psy-choeducational intervention for family caregivers. JPalliat Care 2002;18:253–261.

50. Goldstein NE, Concato J, Fried TR, Kasl SV, Johnson-Hurzeler R, Bradley EH: Factors associated with care-giver burden among caregivers of terminally ill pa-tients with cancer. J Palliat Care 2004;20:38–43.

51. Nijboer C, Triemstra M, Tempelaar R, Mulder M, San-derman R, van den Bos GA: Patterns of caregiver ex-periences among partners of cancer patients. Geron-tologist 2000;40:738–746.

52. Aranda SK: Changing paradigms in research: do weneed to rethink the future? Prog Palliat Care2000;8:193–197.

53. Grunfeld E, Zitzelsberger L, Coristine M, AspelundF: Barriers and facilitators to enrollment in cancer clin-ical trials: Qualitative study of the perspectives of clin-ical 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 care-giving and adjustment to death of a spouse: Findingsfrom the caregiver health effects study. JAMA2001;285:3123–3129.

55. Brazil K, Bedard M, Willison K: Correlates of healthstatus for family caregivers in bereavement. J PalliatMed 2002;5:849–855.

Address reprint requests to:Serge Dumont, Ph.D.École de service social

Faculté des sciences socialesPavillon Charles-De Koninck

Université LavalQuébec (Qc), G1K 7P4

Canada

E-mail: Serge.Dumont@svs.ulaval.ca

CARING FOR A LOVED ONE WITH ADVANCED CANCER 921