Culture and Caregiving

Original Article

Predictive Role of Different Dimensions of Burden for Risk of Complicated Grief in Caregivers of Terminally Ill Patients

Carlo Lai, PhD 1 , Massimiliano Luciani, PhD

2 ,

Emanuela Morelli, MSc 3 , Federico Galli, MSc

3 ,

Roberta Cappelluti, MSc 1 , Italo Penco, MD

3 ,

Paola Aceto, MD, PhD 4 , and Luigi Lombardo, MD

3

Abstract The aim of the study was to test whether high levels of caregiver burden, as other confirmed predictors, are associated with the risk of prolonged grief disorder in caregivers of terminally ill patients. A predictive study was carried out in order to test the hypothesis. A demographic schedule, the Prolonged Grief 12 (PG-12), the Toronto Alexithymia Scale, Hamilton Anxiety Rating Scale, Hamilton Depression Rating Scale, and Caregiver Burden Inventory were administered to 60 caregivers of 51 patients who were admitted in Hospice. In the regression analysis, difficulty in recognizing emotions, total burden, depression, and developmental burden dimension were significant predictors of PG-12 levels. Findings showed that feeling of deprivation of existential expectations represents the greater risk factor for the prolonged grief disorder, among the burden dimensions.

Keywords prolonged grief disorder, caregiver burden inventory, alexithymia, palliative care, hospice, depression

Introduction

Acute grief is a normal experience of life. It happens in an

individual immediately after the death of a loved one. Grief

occurs for a physiological period of 6 to 12 months character-

ized by deep sadness, distressing moods, turbulence, confusing,

feeling lonely, and empty. Some important behavioral signs are

continuous thoughts about him or her, sadness, insomnia,

dreams about him or her, no appetite, and inattention to daily

activities. 1,2

Normally, acute grief evolves into a psychological

condition characterized by the acceptance of the loss-defined

integrated grief. However, sometimes acute grief does not lead

toward a resolution. In such cases, the acute condition tends to

prolong for more than a year. When the normal grief adjust-

ment does not occur in 10 to 12 months and some of the symp-

toms remain as intense intrusive thoughts, pangs of severe

emotions, distressing yearnings, excessively avoiding tasks

reminiscent of the one who died, unusual sleep disturbances,

and maladaptive levels of loss of interest in personal activities, 3

acute grief is defined as prolonged leading to a complicated

grief. 4

The onset of complicated grief seems connected with the

closeness and the intensity of the relationship that the individ-

ual had with the one who died and the circumstance of bereave-

ment such as unexpected, sudden, violent, or premature. 5

The

risk of complicated grief is also associated with stress, anxiety,

posttraumatic stress disorder, and depression. 6-12

Complicated grief results when there is a failure of transition

from acute grief to integrate grief. 13

It is a debilitating disorder,

with significant mental and health consequences, 14-19

and it has

been proposed as a new diagnostic category in the forthcoming

Diagnostic and Statistical Manual of Mental Disorder(Fifth

Edition). 13

Previous studies described the association of complicated

grief with alexithymia, female gender, and early age of the

loved one who died. 13

Recent studies started to investigate the role of burden on

caregivers of patients with neurodegenerative diseases, demen-

tia, psychoses, and eating disorders. 20-23

As of today, there are

no studies (only a recent case study 24

) investigating the possible

1 Dynamic and Clinical Psychology Department, Sapienza University of Rome,

Rome, Italy 2 Psychiatry and Psychology Institute, Catholic University of Sacred Heart,

Rome, Italy 3 Fondazione Roma, Hospice-SLA-Alzheimer, Rome, Italy

4 Department of Anaesthesiology and Intensive Care, Catholic University of

Sacred Heart, Rome, Italy

Corresponding Author:

Carlo Lai, PhD, Dynamic and Clinical Psychology Department, Sapienza

University of Rome, Via degli Apuli 1, 00185, Roma, Italy.

Email: [email protected]

American Journal of Hospice & Palliative Medicine®

2014, Vol. 31(2) 189-193 ª The Author(s) 2013 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909113490227 ajhpm.sagepub.com

predictive role of caregiver burden dimensions on complicated

grief in caregivers of terminally ill patients.

The hypothesis of the present study was to test whether high

levels of alexithymia, with high levels of caregiver burden, are

associated with the risk of complicated grief in caregivers of

terminally ill patients.

Methods

Participants

This study examined the data collected from an Italian hospice,

investigating complicated grief risk in caregivers of terminally

ill patients during the period before death (mean hospitalization

time was 21 days). In the period between February and Septem-

ber 2012, a total of 60 caregivers of 51 patients were

interviewed face to face using a demographic schedule, the

Prolonged Grief Disorder 12 (PG-12), the Toronto Alexithymia

Scale 20 (TAS-20), Hamilton Anxiety Rating Scale (HAM-A),

Hamilton Depression Rating Scale (HAM-D), and Caregiver

Burden Inventory (CBI), during the second day of patient

hospitalization.

Caregivers were identified as family member of a patient

who provided the maximum care to the patient. Caregivers

were recruited from a hospice in central Italy (Rome). The

inclusion criteria were family relationship with a patient having

terminal illness, living in the Lazio region, Italian speaking,

able to give informed consent, and at least 18 years old.

Procedure

After arrival of the patient to the hospice with his or her care-

giver, the patient first undergoes a medical examination where

the palliative care physician proposed a psychological inter-

view with the caregiver during the next day. A psychologist,

through the interview with the caregiver, performed a sociode-

mographic interview and a psychological assessment. At the

end of the evaluation, the psychologist proposed to the care-

giver to participate in the research protocol. After obtaining the

informed consent, the caregiver underwent the psychological

evaluation that included PG-12, TAS-20, HAM-A, HAM-D,

and CBI.

Predeath grief symptoms were measured using the PG-

12. 25,26

The PG-12 is a validated measure that consists of 12

items. The predeath grief scale asks to the interviewee how

often they experienced distressing grief symptoms related to

yearning, interpersonal disengagement, and a sense of mean-

inglessness. The 11 items are rated using a Likert-type scale,

with values ranging from 1 (not at all) to 5 (several times a

day). The Italian version of PG-12 is a validated form. 27

In

order to assess the risk of prolonged grief disorder, the intervie-

wee had to respond ‘‘yes’’ to question 12 of PG-12 (about a

significant difficulty in social, occupational, or other important

areas of functioning) and must have a total score of �28. The TAS-20 is one of the most commonly used instruments

to measure alexithymia. 28-32

This instrument is used with

people who have trouble identifying and describing emotions

and who tend to minimize emotional experience and focus

attention externally. The TAS-20 has 3 subscales or factors;

F1: difficulty describing feelings/emotions, F2: difficulty iden-

tifying feelings/emotions, and F3: externally oriented thinking.

The F3 subscale is used to measure the tendency of individuals

to focus their attention externally. The TAS-20 is a self-report

scale that is comprised of 20 items. Items are rated using a

5-point Likert-type scale, whereby 1 ¼ strongly disagree and 5 ¼ strongly agree. There are 5 items that are negatively keyed. The total alexithymia score is the sum of responses of all 20

items, while the score for each subscale is the sum of the

responses of that subscale. According to TAS-20, the cutoff

score �50 ¼ nonalexithymia, �61 ¼ alexithymia, and scores of 51 to 60 ¼ possible alexithymia.

The CBI is a 24-item multidimensional questionnaire in

which 5 subscales explore 5 different dimensions of caregiver

burden 33-35

:

1. time-dependence burden: objective burden corresponds

to the amount of time devoted to caregiving (items 1-5);

2. developmental burden: the caregiver’s sense of being

left behind and unable to enjoy the same expectations

and opportunities as his or her peers (items 6-10);

3. physical burden: feelings of fatigue and chronic health

problems (items 11-14);

4. social burden: resulting from a perceived conflict of

roles (items 15-19); and

5. emotional burden: originating from awareness of nega-

tive feelings toward the patient, which can be induced

by the patient’s bizarre and unpredictable behavior

(items 20-24).

Scores for each item are evaluated using a 5-point Likert-

type scale ranging from 0 to 4.

The HAM-D is a questionnaire that clinicians may use to

rate the severity of a patient’s major depression. 36-39

The ques-

tionnaire, which is designed for adult patients, rates the severity

of symptoms observed in depression such as low mood, insom-

nia, agitation, anxiety, and weight loss. It is composed of 21

items.

The HAM-A is a questionnaire used by the researcher to rate

the severity of anxiety. It was originally published by Max

Hamilton in 1959. 40

It contains 14 symptom-oriented items. Each

symptom is measured from not present (0) to very severe (4).

Statistical Analyses

Correlation analyses (Pearson r) were conducted in order to eval-

uate the relationship between PG-12 values and the other psy-

chological variables. Analyses of variance (ANOVAs; Fisher

F) were conducted in order to test the differences between

patients with risk of prolonged grief disorder and patients with-

out risk of the psychological variables. A linear regression model

was carried out in order to evaluate the effect of possible psycho-

logical predictors on the risk of complicated grief.

190 American Journal of Hospice & Palliative Medicine® 31(2)

Results

In our sample of caregivers of terminally ill patients, we found

28 caregivers with prolonged grief disorder risk (20 females

and 8 males) and 32 with no risk (23 females and 9 males).

As shown in the previous study, 13

the present one also had

more female caregivers (71%) than male caregivers (29%). Moreover, the female caregivers presented an higher risk level

than do male caregivers (males 24.6 + 10.1 vs females 31.7 + 9.7; F1,58 ¼ 6.4; P ¼ .01441).

As shown in Table 1, the PG-12 risk level was correlated

with the total TAS-20 (r ¼ .29; P ¼ .025), F1 (r ¼ .55; P ¼ .000), F2 (r ¼ .15; P ¼ .254), F3 (r ¼�.18; P ¼ .18), anxiety (r ¼ .54; P ¼ .000), depression (r ¼ .60; P ¼ .000), CBI-Tot (r ¼ .66; P ¼ .000), time-dependence burden (r ¼ .47; P ¼ .000), developmental burden (r ¼ .51; P ¼ .000), physical burden (r ¼ .56; P ¼ .000), social burden (r ¼ .37; P ¼ .004), and emotional burden (r ¼ .32; P ¼ .012).

In Table 2, the caregiver at risk (n ¼ 28) versus the care- givers at no risk (n ¼ 32) showed higher scores on total TAS-20 (risk: 43.1 + 10.9 vs no risk: 39.2 + 8.7; F1,58 ¼ 2.4; P ¼ .127); F1-TAS-20 (risk: 14.0 + 6.3 vs no risk: 10.3 + 3.7; F1,58 ¼ 7.7; P ¼ .007); F2-TAS-20 (risk: 12.7 + 5.8 vs no risk: 10.9 + 6.0; F1,58 ¼ 1.4; P ¼ .243); F3-TAS-20 (risk: 16.3 + 4.6 vs no risk: 17.8 + 6.2; F1,58 ¼ 1.1; P ¼ .29); anxiety (risk: 22.0 + 13.1 vs no risk: 15.6 + 9.3; F1,58 ¼ 4.7; P ¼.033); depression (risk: 18.4 + 8.6 vs no risk: 12.1 + 7.3; F1,58 ¼ 9.2; P ¼.003); CBI-Tot (risk: 41.3 + 15.9 vs no risk: 22.3 + 13.9; F1,58 ¼ 24.4; P ¼ .000007); time- dependence burden (risk: 13.9 + 6.0 vs no risk: 8.6 + 7.1; F1,58 ¼ 9.4; P ¼ .003); developmental burden (risk: 9.9 + 5.3 vs no risk: 4.9 + 3.8; F1,58 ¼ 18.0; P ¼ .00008); physical burden (risk: 11.2 + 6.5 vs no risk: 4.9 + 5.4; F1,58 ¼ 16.7;

P ¼ .00014); social burden (risk: 5.9 + 5.0 vs no risk: 2.9 + 3.9; F1,58 ¼ 6.3; P ¼ .0145); emotional burden (risk: 3.0 + 2.9 vs no risk: 2.0 + 3.4; F1,58 ¼ 1.5; P ¼ 0.23).

The clinical variables that were significantly (P <.05) corre-

lated with the PG-12 scores were inserted in a mathematical

linear regression model as predictors of PG-12 levels. As

shown in Table 3, the model was significant (R ¼ .79; R2 ¼ .62; R

2 adjusted ¼ .58; F6,53: 14.4; P ¼ .00000). Moreover,

CBI-Tot (b ¼ .8; B ¼ 0.5; t53 ¼ 3.4; P ¼ .001), F1-TAS-20 (b ¼ .4; B ¼ 0.7; t53 ¼ 4.1; P ¼ .0001), depression (b ¼ .4; B ¼ 0.5; t53 ¼ 3.0; P ¼ .004), and developmental burden (b ¼�.4; B ¼�0.7; t53 ¼�2.1; P ¼ .04) were able to predict PG-12 scores. Physical burden (b¼�.1; B ¼�0.1; t53 ¼�1.3; P ¼ .195) and emotional burden (b ¼ �.1; B ¼ �0.4; t53 ¼ �1.0; P ¼ .31) were entered in the model but were not able to predict the PG-12 risk level. Anxiety, time-dependence bur-

den, and social burden were not entered in the model.

Discussion

Confirming a previous study, 13

the PG-12 scores were strongly

correlated with the ability to describe feelings, anxiety levels,

depression levels, and with CBI and its subscales. These find-

ings confirm the central role of depression in the prolonged

grief disorder. 41

The ANOVA confirmed the correlation analysis, showing

that the caregiver at risk presented higher levels of impairment

to recognize feelings, anxiety, depression, and caregiver bur-

den than those at no risk. Previous studies already suggested

considering the difficulty of describing feelings during the ini-

tial assessment of the patient and his caregiver. 13

Table 1. Correlations (Pearson r) Between Clinical-Dependent Vari- ables (Total TAS 20, F1, F2, F3, HAM-A, HAM-D, total CBI, Time Dependence, Developmental, Physical, Social, Emotional burden) and PG-12.

PG-12 (P value)

TOT TAS 20 .29 (.25) F1 .55 (.000) F2 .15 (.254) F3 �.18 (.18) HAM-A .54 (.000) HAM-D .60 (.000) Total CBI .66 (.000) Time-dependence burden .47 (.000) Developmental burden .51 (.000) Physical burden .56 (.000) Social burden .37 (.004) Emotional burden .32 (.012)

Abbreviations: CBI, Caregiver Burden Inventory; F1, difficulty describing feelings/emotions; F2, difficulty identifying feelings/emotions; F3, externally oriented thinking; HAM-A, Hamilton Anxiety Rating Scale; HAM-D, Hamilton Depression Rating Scale; PG-12, Prolonged Grief Disorder 12; TAS-20, Tor- onto Alexithymia Scale 20.

Table 2. Aanalyses of Variance (Fisher F) Caregiver Presence of Prol- onged Grief Risk (Risk/No Risk) on the Clinical-Dependent Variables (Total TAS 20, F1, F2, F3, HAM-A, HAM-D, Total CBI, Time- dependence, Developmental, Physical, Social, and Emotional Burden).

PG-12 SI (28) 20 F, 8 M

PG-12 NO (32) 23 F, 9 M F1,58 (P value)

TOT TAS 20 43.1 + 10.9 39.2 + 8.7 2.4 (.127) F1 14.0 + 6.3 10.3 + 3.7 7.7 (.007) F2 12.7 + 5.8 10.9 + 6.0 1.4 (.243) F3 16.3 + 4.6 17.6 + 6.2 1.1 (.29) HAM-A 22.0 + 13.1 15.6 + 9.3 4.7 (.033) HAM-D 18.4 + 8.6 12.1 + 7.3 9.2 (.003) Total CBI 41.3 + 15.9 22.3 + 13.9 24.4 (.000007) Time-dependence

burden 13.9 + 6.0 8.6 + 7.1 9.4 (.003)

Developmental burden 9.9 + 5.3 4.9 + 3.8 18.0 (.00008) Physical burden 11.2 + 6.5 4.9 + 5.4 16.7 (.00014) Social burden 5.9 + 5.0 2.9 + 3.9 6.3 (.0145) Emotional burden 3 + 2.9 2 + 3.4 1.5 (.23)

Abbreviations: CBI, Caregiver Burden Inventory; F, female; F1, difficulty describing feelings/emotions; F2, difficulty identifying feelings/emotions; F3, externally oriented thinking; HAM-A, Hamilton Anxiety Rating Scale; HAM- D, Hamilton Depression Rating Scale; M, male; PG-12, Prolonged Grief Disor- der 12; TAS-20, Toronto Alexithymia Scale 20; TOT, total.

Lai et al 191

In a very interesting way, caregiver burden was the best pre-

dictor of the prolonged grief risk. This finding suggests impor-

tant clinical implications, where the level of burden that

caregiver brings during terminal illness significantly increases

the possibility of affecting a prolonged grief disorder. The sub-

scale that best predicted the prolonged grief risk was develop-

mental burden, showing that the increase in risk of prolonged

grief disorder was not due to the time-dependent, physical,

social, and emotional burden, but due to the developmental

burden. This finding suggests that the caregiver role of a

terminally ill patient can impair the psychological health of a

caregiver not because of the much time or fatigue involved in

caregiving but because of the deprived feeling of doing activi-

ties they wanted and expected to be doing at this moment in

their lives. This means that the caregiver role may be character-

ized by perception of disrupted life expectations. 34

An impor-

tant clinical implication of this finding is that it seems

necessary to perform a caregiver burden assessment of the indi-

viduals involved in caregiving of terminally ill patients in order

to prevent a future prolonged grief disorder. 42

Limitations of the present study was that, despite previous

study 27

suggesting a strong convergence between the risk con-

dition and the clinical diagnosis of prolonged grief disorder, in

this study only the risk and not the diagnosed prolonged grief

disorder was measured for the sample of the caregivers. A long-

itudinal study should be performed to confirm the predictive

role of the considered dependent variables in the onset of

prolonged grief disorder once the patient died.

The finding suggests to improve the comprehension of the

clinical symptoms of prolonged grief disorder with reference

to the risk and protective factors and the possible effective

pre- or postloss treatment. 43,44

Acknowledgments

The authors thank the palliative care team at Fondazione Roma for

their support and the study participants for their time and effort.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to

the research, authorship, and/or publication of this article.

Funding

The authors received no financial support for the research, authorship,

and/or publication of this article.

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