the psychological and physical health of hospice caregivers

Annals of Clinical Psychiatry, Vol. 12, No. 1, 2000

The Psychological and Physical Health ofHospice Caregivers

Yulia Chentsova-Dutton,1 Stephen Shuchter,1 Susan Hutchin,1 Linda Strause,2

Kathleen Burns,3 and Sidney Zisook1,4

This study explores the psychological distress of caring for a dying family member andexamines the differences in depression, anxiety, health, social and occupational functioning,and social support among hospice caregivers and community controls. It compares psychologi-cal functioning of spousal and adult child hospice caregivers. Caregivers of terminally illhospice patients were assessed prior to death as a part of a longitudinal bereavement study.Caregivers reported experiencing higher levels of depression, anxiety, anger, and healthproblems than controls. Hospice caregiving was associated with deterioration in physicalhealth and in social and occupational functioning. The comparisons between adult childrenand spouse caregivers revealed that levels of psychological and physical morbidity were verysimilar for the two generations of caregivers. An awareness of distress symptoms amonghospice caregivers could lead to timely proactive clinical intervention that may preventbereavement complications.

KEY WORDS: hospice; caregivers; adjustment.

INTRODUCTION

Struggling with terminal illness is one of the mostpainful and stressful experiences one can face. Thisdistressing ordeal not only affects the dying patient,but also reverberates through his or her entire family.The number of family caregivers can be expected toincrease in the future with the recent cost contain-ment focus of the healthcare industry and growingelderly population in this country (1).

Caring for a dying patient creates considerablestress in the life of caregivers, forcing them to readjusttheir working schedule, family life, and social rela-tionships. In addition, caregiving can be associatedwith a heavy financial burden. Caregivers are facedwith the dual challenges of providing physical and

1University of California at San Diego, La Jolla, California.2San Diego Hospice, San Diego, California.3Stevens Cancer Center, Scripps Hospital, San Diego, California.4To whom correspondence should be addressed, at Departmentof Psychiatry, 0603-R, University of California, San Diego, 9500Gilman Drive, La Jolla, California 92093-0603; e-mail: [email protected]

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1040-1237/00/0300-0019$18.00/1 2000 American Academy of Clinical Psychiatrists

emotional care for the patient and dealing with antici-patory grief. They often have little time to take ade-quate care of their own health, neglecting healthyeating habits, exercise, and adequate rest.

Thus, it is of no surprise that caregiving is associ-ated with considerable physical and psychologicalvulnerability (2–4). Much of what we know aboutthe stress of caregiving comes from studies focusingon other types of caregivers, such as caregivers ofelderly patients with Parkinson’s and Alzheimer’sdiseases. There is strong evidence that caring for sucha patient is associated with elevated levels of depres-sion, anxiety, and general medical health problemsas compared to population norms or control samples.Clinically significant levels of depression are detectedin approximately 18–46% of caregivers of patientswith dementia (5,6). Levels of depression are knownto be higher among female caregivers, caregivers withpoorer health (4,7), those from distant families, andthose caring for more-disabled patients (7).

Caregivers of hospice patients tend to be some-what younger and care for younger patients forshorter periods of time than their counterparts caring

20 Chentsova-Dutton et al.

for elderly patients with progressive neurological dis-orders. Yet, recent literature confirms that caring fora terminally ill relative is also associated with highlevels of stress and psychological morbidity (8,9). Fe-male caregivers (6,7,10,11) suffer from higher levelsof depression than male caregivers. Other factorsassociated with depressive symptoms in caregiversinclude poor social support and ineffective use ofcoping strategies (11). Male and female caregiversare not shown to differ in physical well-being. Onestudy found that female caregivers tend to functionbetter socially than their male counterparts (12). Itis not clear whether adult children and spouses differin their adjustment to caring for a dying relative.The rates of depression do not differ significantly forspouse and offspring caregivers (6). Substantial levelsof psychological distress have been reported in ap-proximately one third of spouses and one fourth ofadult children caregivers (9). One study reportedthat offspring tend to report more hostility thanspouses (9).

The purpose of this study is to examine emo-tional and physical adjustment and social and occupa-tional functioning among caregivers of hospice pa-tients and a control sample. This study also comparesthe effects of caregiving on spouses and adult childrenof dying patients and male and female caregivers.The data presented here are part of a longitudinalinvestigation of the psychological effects of bereave-ment on hospice caregivers conducted at the SanDiego Hospice. This paper will focus on hospice care-giver adjustment prior to the death of a familymember.

METHODS

Subjects

Adult children and spousal caregivers or‘‘spouse equivalents’’ of hospice patients were re-cruited for the study from the San Diego Hospice.Control subjects were volunteers recruited into thestudy through public relations at the San Diego Hos-pice and the University of California at San Diego.They were recruited by word of mouth by askingresearch and Hospice staff to inform friends andneighbors of the study and by posting notices at Hos-pice and at the UCSD Medical Center. The controlsubjects were included into the study only if they hadnot experienced the death of a first-degree relativeor a friend within the past 2 years. All subjects were

excluded from the study if they were younger than18 years of age, unable to communicate in English, orunwilling to sign an informed consent to participate inthe study.

Materials

The following instruments were chosen for as-sessment of depression, psychological symptomatol-ogy, stress level, and social adjustment related tocaring for a dying relative:

1. The ‘‘Bereavement Questionnaire’’ was de-signed for this study. It included demographic itemsand questions related to social and work activities,social support, and doctor visits.

2. The Social Readjustment Rating Question-naire (SRRQ) (13) assessed stress created by lifeevents. Subjects endorsed life stressors they had ex-perienced in the past 2 years. Each of the endorseditems is assigned a mean stressor score. Individualmean scores are summed to obtain a total score foreach subject.

3. The 28-item Hamilton Psychiatric RatingScale for Depression (HRSD) (14) was used to assesslevels of depression (15,16). Research assistants weretrained on the administration of the HRSD to stan-dardize the administration of the HRSD and ensureacceptable interrater reliability (17).

4. The Beck Depression Inventory (BDI) (18,19) was used to assess self-rated levels of depression.

5. The Brief Symptom Inventory (BSI) (20,21)is a shortened version of the Hopkins SymptomChecklist-90. Scoring of the 53-item BSI results innine primary symptom dimensions and three globalindices of psychological symptomatology. The ninedimensions it assesses are anxiety, depression, hostil-ity, obsessive-compulsive, paranoid ideation, phobicanxiety, psychotism, interpersonal sensitivity, and so-matization. The three global indices used in the studywere the Positive Symptom Total (PST), the GeneralSeverity Index (GSI), and the Positive Symptom Dis-tress Index (PSDI).

6. Social Support Questionnaire Part II (SSQ-II) (Cohen, as cited in ref. 22) assesses the size ofthe social network providing emotional and informa-tional support for caregivers and controls. Sums andtotals of subjects’ estimates of the quality of the sup-port they receive is summed and averaged to obtaintotal informational support, average informationalsupport, total emotional support, and average emo-tional support variables.

Hospice Caregivers 21

Social Support Questionnaire-Part III (SSQ-III)(22) includes questions related to frequency of socialcontacts (including going out alone or with anotherperson, having visitors, and talking to people on thephone), as well as availability of personal resources(such as hobbies or pets). The social contact variableis a sum of all the items.

Design and Procedures

All families accepted into the hospice programwere invited to participate in this study. A socialworker or hospice nurse explained the study to thehospice caregivers at the initial home visit and re-ceived written permission from the caregivers to becontacted by a member of research team. Prior tocontacting the caregiver, research assistants obtainedadditional verbal consent from hospice nurses or so-cial workers. Fewer than 10% of potential subjectswere excluded from entering the study.

Eligible caregivers were contacted by telephoneand underwent an initial telephone interview. Inter-ested subjects were interviewed in their own homes.Witnessed informed consent forms were obtainedfrom all subjects prior to initiation of all protocol-related activities. The initial interview includedHRSD and self-report instruments assessing depres-sion, psychological symptomatology, stress level, andsocial adjustment. Caregivers were asked to completeand return a packet of self-report questionnaires bymail. Twenty-five caregivers did not return pa-perwork after completing the initial interview.

Inclusion criteria for control subjects were iden-tical to those for caregivers, with one exception: con-trols subjects have not experienced any deaths offamily members or friends within the past 2 years.Each control subject gave written informed consentto participate in this study. The data collection proce-dures for controls were identical to those outlinedabove for caregivers.

RESULTS

Demographics

One hundred and twelve caregivers participatedin the study, including 63 (56%) spouse caregiversand 49 (44%) adult children caregivers. Among 69controls, 41 (59%) were spouses and 28 (41%) wereadult children. Eighty-nine percent of the caregivers

cared for patients diagnosed with cancer. Demo-graphic characteristics of the two samples are pre-sented in Table 1. Caregiver and control groups weresimilar in most respects. However, caregivers tendedto be older than controls; their mean age was M �58.7 years, SD � 14.9, as compared to a mean ageof M � 52.6 years, SD � 13.6, in controls (t � 16.0,p � .01). As a group, caregivers tended to be lesseducated than controls (t � 4.7, p � .01). As expected,spouses, with a mean age of M � 65.2 years, SD �10.6, were significantly (t � 13.1, p � .01) older thanadult children, with a mean age of M � 44.4 years,SD � 10.4. Spouses had marriages of longer duration(t � 10.2, p � .01), and lived in households with fewerpeople (t � 4.5, p � .01) and fewer children (t �4.8, p � .01). Analysis of covariance was used incomparing groups to adjust for differences in ageand education between caregivers and controls, anddifference in age between spouses and adult children.The assumptions of ANCOVA, including normality,homogeneity of variance, linearity between covari-ates, homogeneity of regression slopes, absence ofmulticollinearity between covariates, and reliabilityof covariates, were adequately met, unless other-wise noted.

Levels of Stress

We conducted an analysis of covariance (AN-COVA), controlling for age and education, with level

Table 1. Demographic Characteristics of Caregivers and Controls

Group

Caregivers ControlsDemographic Characteristic (n � 112) (n � 69)

Gender (% male) 21 28Age (years) 59** 53**Length of marriage (years) 27 25Marital status (% married) 85 91Religious preference (%)

Protestant 56 67Catholic 21 15Jewish 4 1Other 7 7None 13 10

Race (%)White 96 99African-American 1 1Hispanic 4 0

Years of education 14** 16**Number of people in household 3 2Number of children in household .4 .4

**p � .01.


of life stress as the dependent variable and caregiver–control group and family role as the independentvariables. Not surprisingly, caregivers (M � 236.3,SD � 143.0) reported significantly higher [F(181) �17.8, p � .01] levels of life stress on the SRRQ thancontrols (M � 174.4, SD � 101.0). Overall, adultchildren did not differ from spouses, and there wasno significant interaction between the factors. Nor-mative values associated with proneness to physicalillness were established by Holmes (13). The meanscores for adult children (M � 276.9, SD � 139.0)and spouse (M � 205.6, SD � 140.0) caregivers fellin the 200–299 range; 50% of those with scores inthis range can be expected to experience some type ofphysical illness. Holmes (13) found that for subjectsexperiencing severe stress with SRRQ scores of 350or more, 90% reported significant changes in health.One fifth (20%) of the caregivers obtained scores inthis range, whereas less than one tenth (7%) of con-trols were subject to severe life stress. This differencewas significant, �2(1, N � 181) � 5.3, p � .05.

Depression

A two-way analysis of covariance (ANCOVA)was conducted to compare levels of depression, ascaptured by a clinician-rated HRSD interview,among caregivers and controls. The covariates forthis analysis included age and education. Consistentwith our expectations, the ANCOVA revealed thatcaregivers (M � 8.3, SD � 0.4) had significantlyhigher levels of depression, F(177) � 60.2, p � .01,than controls (M � 2.6, SD � 0.6). Overall, adultchildren obtained lower scores than spouses, evencontrolling for age, F(177) � 7.98, p � .01. Therewas no significant interaction between the two fac-tors. Post hoc Tukey HSD comparisons revealedcaregiver spouses were more depressed than care-giver adult children (Tukey � 2.9, p � .05), whereascontrol spouses and adult children did not signifi-cantly differ. Predictably, when gender was enteredas a second factor into a two-factor ANCOVA, asignificant main effect of gender was apparent,F(177) � 5.7, p � .05, with women reporting higherlevels of depression than men. There was no signifi-cant interaction between gender and group.

Similarly, caregivers reported more depressivesymptoms on the self-rated BDI (M � 9.9, SD � 0.6)than controls (M � 4.6, SD � 0.8); this differencewas statistically significant, F(181) � 24.9, p � .0.1.ANCOVA analyses revealed no significant differ-

ences between genders and family role groups, andthere were no significant interactions in both cases.

Psychological Symptomatology

We conducted two ANCOVAs, controlling forage and education, with global BSI indices as depen-dent variables and the caregiver–control and familyrole groups as independent variables. Consistent withthe view that caregiving is a vulnerability factor forpsychopathology, these analyses revealed that care-givers’ mean scores were significantly higher thanthose of controls on both global indices of psychologi-cal symptomatology, the PSDI [F(177) � 25.0, p �.01] and the GSI [F(177) � 16.9, p � .01]. When thelevels of caregivers’ and controls’ symptomatologywas compared on the BSI subscales using nine sepa-rate ANCOVA analyses, caregivers’ mean scoreswere significantly higher than those of controls onthe subscales of obsessive-compulsive symptoms[F(177) � 11.7, p � .01], depression [F(177) � 21.3,p � .01], anxiety [F(177) � 19.8, p � .01], hostility[F(177) � 9.0, p � .01], and psychotism [F(177) �7.3, p � .01]. Caregivers and controls did not differsignificantly on the dimensions of somatization, inter-personal sensitivity, phobic anxiety, and paranoidideation. The covariates for all of these analyses wereage and education.

Adult children and spouses did not differ on thePSDI, the GSI, and the dimensions of somatization,obsessive-compulsive symptoms, anxiety, hostility,interpersonal sensitivity, phobic anxiety, and para-noid ideation. Spouses had higher total scores thanadult children on the dimensions of depression[F(175) � 4.8, p � .05] and psychotism [F(175) �6.8, p � .05], with no interactions between group andfamily role in both cases. When the group differencesfor these variables were evaluated using the HSDcomparisons, it was evident than spouses and adultchildren did not significantly differ among both con-trols and caregivers.

When gender was added as a factor, two-wayANCOVAs revealed no main effect of gender andno interaction between gender and caregiver–controlgroup on global indices and all subscales, except thatof somatization. Females had higher somatizationscores than males, F(175) � 8.0, p � .01, with nointeraction between gender and group.

Percentages of caregivers and controls endorsingselected items from the BSI are presented in Table 2.


Table 2. Psychological Symptomatology

Percent EndorsingEach Itema

Caregivers ControlsSymptom (n � 112) (n � 69)

Anxiety Nervousness or shakiness inside 15** 3**Feeling fearful 16** 1**Feeling tense or keyed up 31** 6**

Depression Feeling lonely 19** 1**Feeling blue 34** 1**Trouble falling asleep 22* 6*Thoughts of death and dying 14 7

Somatization Nausea or upset stomach 10 3Psychotism Feeling lonely even with people 9** 1**Paranoia People will take advantage of me 6* 0*OCD Blocked in getting things done 20** 6**

Trouble concentrating 18** 1**Having to check and double-check 14 6

Hostility Feeling easily annoyed or irritated 27** 10**Phobic anxiety Feeling uneasy in crowds 5 1

Feeling nervous when left alone 5* 0*Interpersonal Feelings easily hurt 14 4a‘‘Quite a bit’’ and ‘‘Extremely’’ are combined. *p � .05; **p � .01.

Health

Caregivers provided a poorer estimate of theirhealth within the past month than did controls (t �5.0, p � .01) (Table 2). This effect remained signifi-cant even when age was entered as a covariate intoan ANCOVA, F(174) � 21.0, p � .01. There was nosignificant main effect of family role, and no signifi-cant interaction. Caregivers reported a mean of sixvisits to the doctor in the past year, as opposed to fourreported by controls; this difference did not reachsignificance. Adult children and spouses did not differin number of visits to the doctor and there was nointeraction. When categories of health care profes-sions were examined, there was no difference in thenumber of people seeking help from family doctors,other physicians, psychiatrists, self-help organiza-tions, and hot-line counseling. However, more care-givers (17%) than controls (3%) reported visitingmental health counselors, �2(1, N � 181) � 8.2, p �.01. The number of nonpsychiatric hospitalizationsin the past year among caregivers was higher (t �2.0, p � .05) than among controls. Use of sleepingpills or nerve pills, tranquilizers, sedatives, vitaminB, and estrogens did not differ for the two groups,but caregivers used more antianxiety drugs (14%)than did controls (4%), �2(1, N � 180) � 4.0, p � .05.Also, 8 (7%) of caregivers and none of the controlsreported taking antidepressants; the chi-square valueis not reported due to an empty cell.

Social Functioning

Social functioning of caregivers was impaired ascompared with controls (Table 3). Two-way AN-COVA with age and education levels as covariatesassessing the main effects of caregiver–control and

Table 3. Social, Occupational and Health Functioning ofCaregivers and Controlsa

Caregivers Controls(n � 112) (n � 69)

Item AC SP AC SP

Social functioning over past monthDays attending church/synagogue** 1 1 2 4Days with social activities** 4 2 9 8Number of confidants 3 2 2 3

HealthNumber of visits to M.D. (past 4 7 3 5

year)Self-evaluation of health over 27 26 0 5

past month: % poor–fair**Occupational functioning over

past monthHours spent at work/volunteering** 24 3 105 63Days spent at work/volunteering** 6 1 13 11Satisfaction with work: 54 47 21 13

% poor–fair**

aAC, Adult children; SP, spouses. Values for adult children andspouses did not differ significantly. Values for caregivers and controlsin the same row marked by a double asterisk differ at p � .01.


family-role independent variables demonstrated thatcaregivers as a group had fewer social activities out-side of their homes than controls, F(172) � 28.6,p � .01, with no main effect of family role and nosignificant interaction. Caregivers (M � 2.5, SD �2.1) and controls (M � 2.6, SD � 2.0) did not differon the number of confidants.

Two-factor ANCOVA controlled for educationand age revealed that controls tended to visit churchor synagogue more often than caregivers, F(173) �19.5, p � .01. The homogeneity of slopes assumptionwas violated for the covariate of age; therefore, theresults should be considered with caution. Adult chil-dren and spouses did not differ on this variable. Theinteraction between caregiver–control group andfamily role was significant, F(173) � 5.1, p � .05. Posthoc Tukey HSD comparisons revealed that controlspouses visited church significantly more often thancaregiver spouses (Tukey � 2.6, p � .01) and adultchildren (Tukey � 2.7, p � .01).

Between-group comparisons for social contactmeasured by the SSQ-III were computed using two-way ANCOVA with age and education as the covari-ates. Social contact did not differ for caregivers andcontrols. Similarly, adult children did not differ fromspouses, and there was no interaction. Females re-ported higher levels of social contact than males, withno significant interaction, F(178) � 6.6, p � .05.

The size of social networks did not differ be-tween caregivers (M � 8.2, SD � 2.7) and controls(M � 9.1, SD � 2.7), with no main effect of familyrole, and no significant interaction. Likewise, therewas no main effect of gender on the size of the socialnetwork. The interaction between gender and thecaregiver–control group was significant, F(181) � 9.3,p � .01. Post hoc Tukey HSD comparisons revealedthat male caregivers had significantly smaller socialnetworks than female caregivers (t � 1.9, p � .05),and male (t � 2.2, p � .01) and female (t � 3.2, p �.01) controls.

Social Support

The homogeneity-of-slopes assumption was vio-lated for the covariate of education and socialsupport-dependent variables. Therefore, for thesevariables, ANCOVA analyses were controlled forage only. The two groups did not differ on reportedquality of informational support, and there were nosignificant differences between spouses and adultchildren. When gender was enterered as a second

factor into an ANCOVA controlling for age, femalesreported higher quality of informational support thanmales, F(181) � 8.0, p � .01, with no interactionbetween gender and the caregiver–control group.

Similarly, controls and caregivers did not differon reported quality of emotional support, with nodifference between adult children and spouses andno interaction on ANCOVA controlling for age. Fe-males tended to report higher quality of emotionalsupport, F(181) � 4.9, p � .05, with no interaction.

Work

Two-way ANCOVAs controlling for age and ed-ucation were conducted to compare occupationalfunctioning in caregivers with that reported by con-trol subjects. When asked about satisfaction withtheir performance at work, caregivers reported beingsignificantly less satisfied than controls, F(157) �20.5, p � .01, with no difference between adult chil-dren and spouses (see Table 3). Caregivers spentsignificantly, F(165) � 84, p � .01, fewer hours atwork or volunteering within the previous month thancontrols. Adult children and spouses did not differon this variable, with no significant interaction be-tween the factors. When the number of days spentworking or volunteering in the last month was exam-ined, we found that caregivers spent significantly,F(142) � 13.9, p � .01, fewer days (M � 3.0, SD �1.2) at work than controls (M � 13.0, SD � 2.1). Nomain effect of family role status (spouses versus adultchildren), and no interaction was observed. Groupmeans are presented in Table 3.

DISCUSSION

Dealing with a terminal illness in the family isa ubiquitous life event, faced by thousands of Ameri-can families every year. Many families take the taskof caring for a loved one upon themselves. Thus far,the literature on the psychological and physicalconsequenes of bereavement (23–27) is far moreextensive than the literature on prebereavement ad-justment. Thus, an exploration of the impact of care-giving on prebereavement morbidity and adjustmentis long awaited. Little is known about the part playedby family role and gender in prebereavement adjust-ment. This study is meant to fill that void. Uniquefeatures of our design include comparison of func-


tioning between caregivers and population controlsand between spousal and offspring caregivers.

As expected, caregivers in our sample reportenduring much higher levels of acute life stress thanpopulation controls. Therefore, it is not surprisingthat similarly to caregivers of the elderly with demen-tia (5,6), hospice caregivers experience substantiallevels of psychological distress. This distress is evi-dent across diagnostic domains, finding expressionin the form of depression, anxiety, anger, or healthproblems. The most common symptoms of depres-sion among caregivers were low mood, trouble fallingasleep, and loneliness. Alarmingly, 14% of caregiversendorsed suicidal thoughts. Caregivers also reportedhigher levels of anxiety symptoms than controls. Theyfrequently endorsed complaints of feeling tense orkeyed up, consistent with high stress response. Higherfrequency of antianxiety medication usage in thecaregiver sample confirms these findings. Levels ofoverall psychopathology, in particular hostility, ob-sessive-compulsive ruminations, and psychotism,were likewise elevated among caregivers as com-pared to the control sample. Some common symp-toms included feeling easily annoyed or irritated,feeling blocked in getting things done, trouble con-centrating, and feeling hurt easily. Not surprisingly,caregivers reported visiting mental health counselorsmore often than did normal controls.

We also found some support for the hypothesisthat caregiving is associated with deterioration inphysical health. About 20% of the caregivers weresubject to life stress severe enough to be associatedwith significant deterioration in health in the future.An additional 50% of the caregivers were subject tomild or moderate levels of life stress associated withvulnerability to physical illness and accidents in thefuture. Only about one third of caregivers as com-pared to one half of controls were not exposed toclinically significant levels of life stress. Subjects’ as-sessment of their own health revealed that approxi-mately one third of caregivers believed their healthto be fair or poor rather than good or excellent, ascompared to less than 5% of controls. Caregiverswere hospitalized for medical reasons more oftenthan controls, even when the analyses were con-trolled for the covariate of age. Despite reports ofpoor health and the elevated number of hospitaliza-tions, caregivers did not visit their doctors more fre-quently than controls. A possible explanation is thatcaregivers tend to neglect their own ailments becausetheir attention is focused on their terminally ill rela-tive and they may feel they are restricted to their

relative’s bedside and therefore unable to leave thehome or hospice room.

Caring for hospice patients takes a heavy toll oncaregivers’ time and energy. Providing care for a dy-ing relative often forces informal caregivers to relin-quish their jobs and limit their social activities. Adultchildren often move to another part of the countryto care for a dying parent. In many cases, hospicecaregivers can leave home only when another relativeor a volunteer takes over their duties. As can beexpected, we have found evidence that caregivingwas associated with impaired social and occupationalfunctioning. Caregivers reported going out sociallyand working or volunteering significantly less fre-quently than their non-caregiving counterparts.When they were able to work, caregivers were lesssatisfied with their work performance. They were notable to attend places of worship as often as thosewithout caregiving responsibilities. On a more posi-tive note, we found that caregivers and controls didnot differ on the amount of social contact and socialsupport available to them. Research shows that theperceived inadequacy of social support is predictiveof strain and depression in caregivers (11). Therefore,adequate social support is one of the strengths of thisgroup of hospice caregivers. The size of caregivers’social networks and the number of confidants werenot diminished as a result of a caregiving burden.Caregivers received the same amount of informa-tional and emotional support from their relatives andfriends as did controls.

The comparisons between adult children andspouse caregivers revealed that levels of psychologi-cal and physical morbidity were very similar forthe two generations of caregivers. This is consistentwith earlier work (6) comparing depression in adultchildren and spouse caregivers of Alzheimer’s dis-ease patients. However, caregiving spouses reportedhigher levels of depression on the clinician-scoredmeasure than the caregiving adult children. Theolder cohort of spouses were about to lose theirbest friends, life companions, and lovers. They werealso more likely to have experienced recent signifi-cant losses and serious physical ailments than theyounger cohort of adult children. Therefore, aspainful as losing a parent can be, it is not surprisingthat spouse caregivers appeared more depressed tothe objective raters. However, the two groups didnot differ on the self-report measure of depression.Perhaps spouses tended to minimize their depres-sive symptoms, attributing them to anticipatorygrief.


Consistent with the previous literature on gen-der differences in caregiving (6,7,10,11) and the well-documented gender differences in the prevalence ofdepression (28), we found that female caregivers andcontrols alike reported higher levels of depressivesymptoms on the clinician-rated Hamilton Psychiat-ric Rating Scale and more somatic complaints thandid male subjects. Biological, sociocultural, and psy-chological explanations have been proposed to ac-count for the gender differences in the prevalence ofdepressive disorders (28,29). On the other hand, wefound that, when asked about social contact and sup-port, male controls and caregivers alike were at adisadvantage. In particular, male caregivers’ socialnetworks were smaller than those of any other group.Males in both groups interacted with fewer peopleinside and outside of the home, and reported poorerquality of informational and emotional support fromfriends, relatives, and medical professionals. It canbe hypothesized that these social deficits can put menat a disadvantage during the recovery process.

Theresultsof thisstudyshouldbe interpretedwithcaution. First, the self-report nature of most of our in-struments may affect thevalidity ofour results. Second,the caregivers represented in our study were mostlyWhite, urban, and female. The data obtained from oursample may not be generalizable to larger populationsor to caregivers from other ethnic backgrounds andareas. Third, the caregivers in this study were signifi-cantlyolderandlesseducatedthancontrols. Itmayalsobe that hospice caregivers may not be a representativesample of spouses and adult children of other dyingpatients with respect to vulnerability to psychiatricproblems. For instance, it couldbepossible that servingas a hospice caregiver may be a reflection of particularpersonality or emotional variables not present in oth-ers. Future demographically balanced samples withbetter matching of control samples are desirable. Acombination of objective and subjective assessment ofhealth and functioning would be optimal in order tovalidate subjects’ self-reports with clinician-rated in-struments and health records. It would further benefitfuture investigations of the impact of hospice care-giving to compare caregivers of patients at variousstages of terminal illness in order to assess the effectsof caregiving burden and anticipatory grieving on theirphysical and emotional well-being.

CONCLUSION

Hospice philosophy encompasses the goals ofproviding support for the patients and caregivers.

This study shows that caregiving puts spouses andadult children alike at increased risk for medical andpsychiatric morbidity. These findings have importanttherapeutic implications. Given this population’s vul-nerability, there is need for a support system, anempathic environment, and identification and treat-ment of psychiatric and medical complications associ-ated with caregiving. Only 17% of caregivers in ourstudy reported seeking help from mental health coun-selors. Our results should serve as a warning for phy-sicians working with families with relatives in theterminal stages of illness. Often, these physicians arethe only medical professionals in contact with hospicecaregivers. It is of vital importance that identificationof those at risk for the debilitating outcomes of care-giving and appropriate medical and/or psychiatricreferrals aimed at amelioration of caregivers’ distressbecome a routine part of palliative care. As healthcare increasingly turns to informal caregivers to pro-vide hospice care, the public health ramifications ofthe risks of caregiving can be enormous. In order toensure appropriate care for terminally ill patients,adequate care for caregivers needs to be provided.

Many widows and widowers recognize that theirgrieving started before a loved one’s death. Learningmore about predeath adjustment of caregivers willallow us to identify risk factors for bereavement ad-justment complicated by depression, anxiety, andhealth impairment, and to develop effective earlyintervention strategies for those at risk. Bridging thegap between our knowledge of an individual’s adjust-ment before and after a loved one’s death remainsan important research goal. Finally, these results arepotentially generalizable to other populations under-going major life stresses, such as serious (but not life-threatening) illnesses of family members, bereave-ment, divorce, and prolonged work stress.

ACKNOWLEDGMENT

All research conducted through the Center forPalliative Studies is made possible through a gener-ous grant (#901152) from the W. M. Keck Foun-dation.

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