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 CCILE CHARBONNEAU, Ph.D.,5 and LUCIE VZINA, M.A.6
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 patients 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 patientsterminal 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 caregivers burden, the patients young age, the patients symptoms, the caregivers 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.
1cole de service social, Universit Laval, Centre de recherche en cancrologie, Universit Laval, Qubec, Canada.2Facult de mdecine, Universit Laval, Qubec, Canada.3Division of Palliative Care, University of Ottawa and Sister of Charity of Ottawa Health Service Partnership, Ot-
tawa, Ontario, Canada.4Facult de pharmacie, Universit Laval, Psychiatre, Centre hospitalier universitaire de Qubec, Centre de recherche
en cancrologie, Universit Laval, Centre de recherche Universit Laval-Robert-Giffard, Qubec, Canada.5Centre jeunesse de Qubec, Qubec, Canada.6Unit de mdecine familiale, Hpital Laval, Qubec, Canada.
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.810 Characteristics of informal caregiversrelated to their psychological distress are age,state of health, relationship to the patient,7,1113
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.7,1623 Other factors may also influencethe psychological distress of family caregivers:the accessibility and availability of homecare,2426 social support,20,2629 place of death,27,30
and financial burden.10,3133 However, very littleresearch exists that prospectively addresses thefamily caregivers 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.
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 Qubec 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 patients 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).
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-tients or caregivers 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-givers psychological distress was evaluated us-ing the Indice de dtresse psychologique de SantQubec (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 patients symptoms according to the Symp-tom Distress Scale (SDS),38 caregivers burden,39
caregivers 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.
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 caregivers psy-
chological distress and the independent variableswere assessed according to the patients loss ofautonomy as follows. Pearsons product-momentcorrelation coefficient was used to assess the re-lationship between the psychological distress andother continuous variables, while the Students ttest was used for analyzing categorical variables.
At each level of the patients performance sta-tus (ECOGPS grade 2, 3, and 4), multiple regres-sion analyses were performed to identify modelsthat best explained the family caregivers 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).
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). Patients setting of care at the time ofinterview was mainly at home (96%) when thepatients performance status was ECOGPS grade2. However, this figure decreased sharply, ac-cording to the decrease in the patients 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 PATIENTS 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 patients 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 patients 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 (2388) 12.3Number of years of schooling (Range) 12.3 (523)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 caregivers psychologicaldistress according to the changes in patientsperformance 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-givers 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-givers burden and the perceived support receivedfrom friends...