You are on page 1of 8

Counseling/Pastoral Care

American Journal of Hospice


& Palliative Medicine®
Palliative Care Caregivers’ Grief Mediators: 1-8
ª The Author(s) 2015
Reprints and permission:
A Prospective Study sagepub.com/journalsPermissions.nav
DOI: 10.1177/1049909114565660
ajhpm.sagepub.com

Alexandra M. Coelho, MD1, Mayra A. Delalibera, MD2,


and António Barbosa, PhD1

Abstract
The aim of the study is to identify the mediators of complicated grief in a Portuguese sample of caregivers. Grief mediators were
prospectively evaluated using a list of risk factors completed by the palliative care team members, during the predeath and
bereavement period. More than 6 months after the death, we applied PG-13 to diagnose prolonged grief disorder (PGD). The
sample was composed of 64 family caregivers. Factors associated with PGD were insecure and dependent relationship, unre-
solved family crisis, and the perceived deterioration and disfigurement of the patient. The results show relational factors are rel-
evant, but we must consider the reciprocal influence among factors, as well as their impact on specific symptoms.

Keywords
grief, mediators, risk factors, caregivers, palliative care, prospective study

Introduction seem to be a significant mediator in spouse loss: widowhood was


associated with anxiety in those who were highly dependent on
A substantial number of family caregivers of seriously ill
their partners; yearning and longing for the deceased spouse was
patients are at risk of developing symptoms of complicated grief also correlated with proximity and dependency. This is more evi-
following the patient’s death.1 The early identification of those
dent in widows who received instrumental support from the
at risk of developing grief complications is useful as a main indi-
deceased, when compared with the masculine population that
cator of the individual vulnerability, so it became a current prac-
presented the same level of dependency.11
tice in palliative care, allowing a preventive intervention, as well
Regarding the situational factors, literature focuses on the
as the rational allocation of resources in bereavement support.2
circumstances of death. In case of advanced disease, the vul-
Many authors3-6 aimed to identify the personal, interpersonal,
nerability comes from the insufficient communication that hin-
and situational mediators that affect the bereavement outcomes.
ders the awareness of the impending death.12,13 Taking into
Based on the most recent conceptualization of Stroebe and account the importance of quality of end-of-life care, place
Shut,7 we developed a comprehensive classification of grief
of death also becomes an important mediator.14 The death in
mediators applied to caregivers’ population which distinguishes
context of hospice is associated with a better outcome com-
between specific and general factors. Specific ones are related to
pared to intensive care unit.15 The perception of medical neg-
characteristics of loss; general factors do not result from loss, but
ligence was equally related to difficulties in grief due to the
from personal and social causes, and affect the health of the glo-
anger and revolt that it causes on the bereaved person.16
bal population (eg, depression), although they might, as well,
Beyond that, caregivers’ grief is affected by the physical and
interfere in grief reaction. The first group includes, on the one
emotional effort dispended during patient’s assistance.17-21 The
hand, the demographic characteristics of the patients who died distress level is associated with the perception of increased
and the relational aspects with the object of loss; on the other
hand, the situational factors specifically related to care-giving
process. The general factors are classified as intrapersonal (demo- 1
Palliative Care Unit, Hospital Santa Maria, Academic Center of Studies and
graphic characteristics of bereaved, psychiatric antecedents, Intervention in Grief, Bioethics Center, Faculty of Medicine, University of
attachment style, way of coping, and personality) and interperso- Lisbon, Lisbon, Portugal
2
nal (family dynamics, cultural, and religious aspects). Palliative Care Unit, Hospital Santa Maria, Higher Institute of Applied
Respecting the object of loss, in the specific factors group, Psychology, Lisbon, Portugal
Ringdal et al8 found that the youth of the deceased is the demo-
Corresponding Author:
graphic characteristic that interferes most in the process of grief. Alexandra M. Coelho, Centro de Bioética da Faculdade de Medicina da
However, the death of a spouse or child has been also strongly Universidade de Lisboa, Avenida Professor Egas Moniz, 1649-028 Lisboa, Portugal.
associated with complicated grief.9,10 The relational aspects Email: alexandra.moura.coelho@gmail.com

Downloaded from ajh.sagepub.com by guest on February 3, 2015


2 American Journal of Hospice & Palliative Medicine®

difficulty in assistance to the patient, considering aggravating significant determinants of complicated grief for caregivers.
factors such as the patient’s problematic behavior, the intensity A recent study44 followed the caregivers admitted to palliative
of care, the long duration of the disease,22 and the depletion of care services since the stage prior to death until 6 and 13
the personal gains of the caregiver role.23,24 During bereave- months after it. They identified, as risk factors for prolonged
ment, many caregivers present intrusive thoughts related to the grief symptoms, widowhood, dependency relationship with the
end-of-life decisions25 and the constant perception of the deceased, high impact of caring on schedule, poor family func-
patient’s physical declination.26 Other situational risk factors tioning, and low levels of optimism.
are the interpersonal conflicts that affect family cohesion, some The results from these studies are not sufficiently congruent to
of them resulting from the difficulty in combining the caregiver identify the main mediators of grief complications in the pallia-
role with other family and social activities.27,28 tive caregiver population. Moreover, according to Worden,5 the
Concerning the general factors, we start by mentioning the predictors of complicated grief in a population cannot be general-
intrapersonal dimension. The gender differences have been ized. This author suggests the use of a preventive model, based on
widely studied. The female gender is often associated with descriptive studies, in order to establish more accurately the indi-
more intense manifestations of grief.8,29,30 Another demo- cators of increased risk of complicated grief for each population.
graphic characteristic that influences the process of grief is the This pilot study is unique in its prospective assessment of family
age of the deceased. In adult life, the elderly widowers have carers of patients referred to a palliative care service in Portugal.
been identified as the most vulnerable.8,30 Therefore, the main objective of the present study is to describe
The predisposition to develop maladaptive patterns of grief the prolonged grief mediators in a Portuguese sample of care-
is also related to the presence of antecedents, such as psychia- givers whose relatives were accompanied in palliative care. A
tric disorder history,31 separation experiences in infancy,32 pre- second aim is to verify whether specific risk factors are associated
vious significant losses,30 and the anxious-ambivalent style of with different grief symptoms. Finally, we intend to describe the
attachment.33 Concerning personality characteristics, neuroti- mutual relationship between risk factors. We hypothesize that,
cism assumes particular relevance in the grief process.34 Imma- besides relational factors, there are other situational factors,
ture defensive styles, such as denial and distortion of external related to care giving process, that contribute differentially to pro-
reality, are considered maladaptive in grief,35 as well as avoi- longed grief manifestation. Besides, we assume that these vari-
dant36 and ruminative strategies of coping.37 ables combine each other to create a complex influence system
In the interpersonal factors group, the lack of family support that determines the grief trajectories.
was identified as the best predictor for maladjustment to loss.38
Dysfunctional families, characterized by low cohesion, high con-
flict, and reduced capacity for emotional expression, have been Method
associated with worst adjustment to loss and psychosocial mor-
bidity.39-41 The family conflicts related to end-of-life decisions, Sample and Setting
discussions, disagreements, insults, and resentments between It has been constituted a convenient sample of caregivers of
relatives were highlighted as an important agent of grief compli- patients admitted to the Palliative Care Unit of the Hospital of
cations.41 An additional aspect concerns the cultural and religious Santa Maria in a 9-month period. The inclusion criteria were
influence. There is evidence that sharing memories of the older than 18 years, be a relative of a patient accompanied in pal-
deceased with others, the use of symbolic objects and the practice liative care, and be informally involved in the care of the patient.
of meaningful rituals are facilitators of adaptation to loss.42
Although there is much research on grief mediators in gen-
eral bereaved population, few studies assessed prospectively
Instruments
the population of caregivers in palliative care. Kelly et al43 The assessment of grief mediators was performed using a list of
evaluated family carers referred to a palliative home care ser- grief mediators. To our knowledge, there is no self-report assess-
vice previous to the death and 4 months after it. Their results ment tool to easily identify the individual vulnerability and
stressed that the relationship with the patient was a significant describe risk factors for grief complications. Ellifritt45 developed
predictor of grief symptoms, along with other factors, such as a Bereavement Risk Questionnaire to rate 19 possible risk fac-
the greater number of adverse life events, carer’s coping tors, according to bereavement professionals, in a nationwide
responses, past bereavement and separation experiences, and study. A modified version of that list was created for this study,
greater severity of patient’s illness at the time of palliative care based on empirical data from narrative review of literature, to
referral. Another study assessed caregivers14 who cared for assess individual risk to grief complications. We used proxy
terminally ill patients with cancer in the hospice ward or who report from health professionals taking in account Ellifritt’s posi-
received shared-care consultation. The interviews were carried tion that health professionals are able to identify risk factors.
out before the death and between 6 and 14 months afterward. Besides, we assume that family caregivers, facing the terminal
The results demonstrated that spouse and parent–child relation- illness of the patient, are affected by emotional disturbance, so
ship, female gender, shorter caring duration, no religious belief, they lack insight about many problems that may interfere in grief
unavailable family support, history of mood comorbidity, no process (eg, relational aspects with the patient, denial/avoidance
medical disease history, and no hospice ward stays were mechanisms, and previous unresolved losses).

Downloaded from ajh.sagepub.com by guest on February 3, 2015


Coelho et al 3

Based on the classification described earlier (specific Table 1. Demographic Characterization.


and general factors), the risk factors were distributed in the
Participants (n ¼ 64) Patients who died
following categories: specific factors: (1) object of loss: demo-
graphics of deceased, kinship, relational aspects (eg, ambiva- Age, mean (SD) 58.20 (14.07) 69.07 (10.85)
lence, dependency, high-intensity relationship, and insecure Amplitude 15-84 40-89
relationship) and (2) loss circumstances, for example, uncon- Gender, n (%)
trolled symptoms, prolonged disease, dysfunctional relation with Male 11 (17.2) 33 (51.6)
Female 53 (82.8) 31 (48.4)
professionals, concurrent stressors; general factors: (1) intraper-
Marital status, n (%)
sonal factors, for example, youth of deceased, psychopathological Single 5 (8.3) 0 (0)
antecedents, denial/avoidance coping mechanisms, previous Married 20 (33.3) 46 (71.9)
unresolved grief, lower resistance to stress, reduced expression Widower 34 (56.7) 15 (23.4)
of feelings and (2) interpersonal factors, for example, lack of Divorced 1 (1.7) 3 (4.7)
social support, presence of children at home, family conflicts, Kinship, n (%)
impossibility to accomplish religious rituals. The mediators were Partner 33 (51.6)
Offspring 20 (31.2)
evaluated in a dichotomous scale (present/absent).
Parent 2 (3.1)
To assess prolonged grief disorder (PGD), we used the Brother 3 (4.7)
PG-13, developed by Prigerson et al,46 validated to Portuguese Others 6 (9.4)
population by Delalibera et al47 It consists of 13 items, each
expressed in a Likert-type symptom frequency scale, ranging Abbreviation: SD, standard deviation.
from 1 (almost never) to 5 (several times a day), for example,
‘‘in the past month, how often have you felt yourself longing or Table 2. Circumstances of Illness and Death.
yearning for the person you lost?’’ ‘‘have you had trouble
Time since diagnosis n (%) Months after death
accepting the loss?’’ except for the answers to items 2 and
13, which are dichotomous (categorized as yes/no), for exam- Until 6 months 22 (40.0) Mean (SD) 7.09 (2.97)
ple ‘‘have you had the experience at least daily, for a period 6-12 months 10 (18.2) Mode 6.00
of at least 6 months?’’ and ‘‘have you experienced a significant 1-2 years 5 (9.1) Amplitude 6-18
reduction in social, occupational, or other important areas of 2-3 years 8 (14.5)
More than 3 years 10 (18.2)
functioning (eg, domestic responsibilities)?’’ Collectively,
these items are a set of symptoms and signs (feelings, thoughts, Follow-up period in
and actions) in response to the loss of a significant loved one Palliative Care (PC) n (%) Place of death n (%)
who are persistently demonstrated for a minimum period of 6
Single assessment 12 (19.7) Hospital Santa Maria 42 (67.7)
months and are associated with a significant degree of func-
Up to 1 week 9 (14.8) Home 13 (21.0)
tional disorder, such as occupational or social disability. 1-4 weeks 18 (29.5) Palliative Care Unit 2 (3.2)
Detailed information about the course of illness and death was 1-3 months 13 (21.3) Other hospital 4 (6.5)
obtained by consulting the deceased patient’s medical record. 3-6 months 7 (11.5) Other institution 1 (1.6)
6 months-1 year 2 (3.3)

Procedure Abbreviation: SD, standard deviation.

The grief mediator’s inventory was completed by the Palliative


Care Team members during the period of illness. It results from
Results
the informal evaluation of complicated grief mediators, which This study’s sample is composed of 64 family caregivers. The
is part of professionals’ current practice during assistance in majority is female (82.8%), widows (56.7%), with a mean age
palliative care, before and after the patient’s death. The fami- of 58.20. Mostly, they have lost their partner (51.6%) or a par-
lies were selected to participate in the study only when the team ent (31.3%). The mean age of deceased was 69.07 (Table 1).
had sufficient information on the dimensions assessed. The The patients were almost exclusively oncologic (96.6%), the
PG-13 was systematically administered by telephone contact most frequent gastric cancer (27.2%). The other patients had
to all bereaved relatives, 6 months after the death of the patient, cardiovascular disease. Most patients had a relatively brief
during 8 months. Data concerning diagnosis, length of disease, period of disease, considering that in 40% of the cases, there
and place of death were collected from the patients’ clinical files. were only 6 months between diagnosis and death. The time
For the statistical analysis, we used the SPSS 20.0 program. of assistance in palliative care was, in most cases, until 3
The occurrence rate of grief mediators was assessed based on months (81.3%); few patients were followed for a longer
percentage value. Given the nominal nature of the variables, period. The place of death was mostly in hospital (67.7%),
we conducted the chi-square test to relate grief mediators with although 21% died at home. The time since death was, on aver-
PGD scores, with a level of significance set at 0.05. The age, 7.09 months, ranging from 6 to 18 months (Table 2).
research project was approved by the Ethics Committee of the In the population of 64 bereaved, a total of 17 (26.6%)
Santa Maria Hospital (CHLN-HM). met the diagnostic criteria for PGD. The influence of

Downloaded from ajh.sagepub.com by guest on February 3, 2015


4 American Journal of Hospice & Palliative Medicine®

Table 3. Grief Mediators Frequency and Association With PGD.

% Chi-square P

FEO Specific factors–object of loss


FEO1 High intensity of relationship 37.5 0.64 .42
FEO2 Ambivalent relationship 50.0 0.08 .77
FEO3 Dependency relationship 26.6 4.98 .05a
FEO4 Conflictual relationship 25.0 1.30 .32
FEO5 Youth of deceased 1.6 0.36 1.00
FEO6 Truncated projects/pending issues 23.4 4.05 .09
FEO7 Insecure relationship 28.1 7.05 .01b
FES Specific factors—situational
FES1 Lack of symptom control 35.9 0.42 .51
FES2 Dysfunctional relationship with health professionals 18.8 0.01 1.00
FES3 Death associated with therapeutic obstinacy 9.4 2.39 .18
FES4 Diagnosis difficulties 20.3 0.14 .73
FES5 Process of disease too long 9.4 0.15 .65
FES6 Patient deteriorated, disfigured 29.7 3.56 .05a
FES7 Responsibility for the death 6.3 1.54 .56
FES8 Concurrent stressors/secondary losses 45.3 0.54 .46
FES9 Low socioeconomic level 10.9 0.01 1.00
FES10 Exclusively domestic activities 28.1 0.58 .53
FIA General factors—intrapersonal
FIA2 Psychopathological antecedents 18.8 0.34 .71
FIA3 Previous attempts of suicide 1.6 2.80 .26
FIA4 Early loss of parents 1.6 0.36 1.00
FIA5 Previous unresolved grief processes 14.1 1.71 .23
FIA6 Youth of bereaved 10.9 2.84 .17
FIA7 Very intense reactions of bitterness/anger 23.4 0.46 .51
FIA8 Reduced expression of feelings 40.6 1.45 .22
FIA9 Feelings of guilt 20.3 0.14 .73
FIA10 Low tolerance to stress 23.4 4.05 .09
FIA11 Low self-esteem 34.4 0.47 .49
FIA12 Denial/avoidance mechanisms 21.9 0.76 .49
FIE General factor—interpersonal
FIE1 Lack of social and family support 17.2 0.65 .46
FIE2 Presence of children (<14) at home 17.2 2.07 .26
FIE3 Unresolved family crisis 32.8 4.25 .03a
FIE4 Social isolation 32.8 2.13 .14

Abbreviations: PGD, prolonged grief disorder.


a
Notes a significance value of P  .05.
b
Notes a significance value P  .01.

demographics, causes, and circumstances of illness and death deterioration and disfigurement of the patient (w2 ¼ 3.56; P
in the PGD was not significant. This diagnosis is prevalent in ¼ .05; Table 3).
the widows group (53.3%). There were reciprocal influences between these mediators
Frequency analysis of grief mediators (Table 3) reveals the in the group of persons diagnosed with PGD (Table 4). The
prevalence of ambivalent relationship (50%), followed by con- results indicate that the dependency relationship is statisti-
current stressors and secondary losses (45.3%). The third most cally associated with truncated projects/pending issues (r ¼
frequent mediator is intrapersonal, namely the reduced expres- .419, P < .001), exclusively domestic activities (r ¼ .332,
sion of feelings (40.6%). Concerning the interpersonal issues, P < .001), social isolation (r ¼ .409, P < .001), and low toler-
the most frequent are social isolation and unresolved family ance to stress (r ¼ .335, P < .001). This last factor is also
crises (both with 32.8%). In the factors related to object of loss, related to insecure relationship style (r ¼ .392, P < .001), as
we highlight the high intensity of relationship (37.5%). From well as psychopathological antecedents (r ¼ .501, P <
the situational factors, the most prevalent factor is lack of .001), previous unresolved grief processes (r ¼ .447, P <
symptom control (35.9%). .001), low self-esteem (r ¼ .498, P < .001), and the presence
Among all the mediators, those statistically associated with of concurrent stressors/secondary losses (r ¼ .408, P < .001).
PGD are insecure pattern of relationship (w2 ¼ 7.05, P ¼ .01), The image of the patient deteriorated or disfigured is corre-
the dependency relationship (w2 ¼ 4.25, P ¼ .03), the unre- lated with low tolerance to stress (r ¼ .360, P < .001). The
solved family crisis (w2 ¼ 4.25, P ¼ .03), and the perceived unresolved family crisis is associated with several factors,

Downloaded from ajh.sagepub.com by guest on February 3, 2015


Coelho et al 5

Table 4. Correlation Between Mediators Within PGD Group. Table 5. Correlation Between Grief Mediators and PG-13 Items.

FEO3 FIA1 FES6 FIE3 FEO3 FIA1 FES6 FIA10 FIE2 FIE4

FIE1 .387a P2 .330a


a a a
FEO6 .419 P5 .385 .325
FES10 .332a P6 .379a .361a
FIE4 .409a .362 a
P7 .344a
FIA10 .335a .392a .360a .477a P8 .404a
FIA2 .501a .346a P9 .375a
FIA5 .447a P10 .324a
FIA11 .498a .545a P11 .396a .366a
FES8 .408a .367a P12 .360a
FEO2 .366a P13 .328 a

FEO4 .365a
Abbreviations: FEO3, dependency relationship; FIA1, insecure relationship;
Abbreviations: FEO3, dependency relationship; FIA1, insecure relationship FES6, patient deterioration and disfiguration; FIA10, low tolerance to stress;
style; FES6, patient deterioration and disfiguration; FIE3, unresolved family FIE2, presence of children (<14) at home; FIE4, social isolation; P2, In the past
crisis; FIE1, lack of social and family support; FEO6, truncated projects/pending month, how often have you felt yourself longing or yearning for the lost of the
issues; FES10, exclusively domestic activities; FIE4, social isolation; FIA10, low person you lost? P5, In the past month, how often have you felt stunned,
tolerance to stress; FIA2, psychopathological antecedents; FIA5, previous shocked, or dazed by the death? P6, Confusion about your role in life or a
unresolved grief processes; FIA11, low self-esteem; FES8, concurrent stres- diminished sense of self (ie, feeling that a part of yourself has died)? P7, Have
sors/secondary losses; FEO2, ambivalent relationship; FEO4, conflictual rela- you had trouble accepting the loss? P8, Has it been hard for you to trust others
tionship; PGD, prolonged grief disorder. since the loss? P9, Do you feel bitter over the loss? P10, Do you feel that
a moving on (eg, making new friends, pursuing new interests) would be difficult
Notes a significance value of p  .01.
for you now? P11, Do you feel emotionally numb since the loss? P12, Do you
feel that life is unfulfilling, empty, or meaningless since the loss? P13, Have you
namely, the lack of social and family support (r ¼ .387, P < experienced a significant reduction in social, occupational, or other important
areas of functioning (eg, domestic responsibilities)?
.001), social isolation (r ¼ .362, P < .001), low tolerance to
stress (r ¼ .477, P < .001), psychopathological antecedents
(r ¼ .346, P < .001), low self-esteem (r ¼ .545, P < .001), con- palliative care. The most common factors were not those that
current stressors/secondary losses (r ¼ .367, P < .001), ambiva- contribute most to PGD. In this sample, ambivalent relation-
lent relationship (r ¼ .366, P < .001), and conflictual ship, concurrent factors/secondary losses, reduced expression
relationship (r ¼ .365, P < .001). of feelings, and high intensity of relationship prevailed.
The results described in Table 5 are related to correlation We found that the relational aspects, namely the insecure and
values between grief mediators and PG-13 items. A positive dependent relationship, were the most associated with PGD.
association between the dependency relationship and the symp- Although we cannot establish the correspondence between these
toms of shock (r ¼ .385, P < .001) and numbness (r ¼ .396, P < patterns of relationship and the attachment styles, these results
.001) after the loss was demonstrated. On the other hand, the are consistent with the literature.11,48-50 Analyzing specifically
insecure relationship style is correlated with inability to trust the influence of insecure relationship in grief symptomatology,
others after the loss (r ¼ .404, P < .001) and significant impair- we noticed that this relational pattern contributes to a significant
ment in social, occupational, and other important areas of func- reduction of social and occupational activities, accentuating the
tioning (r ¼ .328, P < .001). The image of the patient’s difficulty to trust others. On the other hand, the persons with a
deterioration and disfiguration was inversely correlated with dependent relationship are more prone to symptoms of trauma,
symptoms of shock (r ¼ .325, P < .001) and numbness such as shock, confusion, and emotional numbness. Prigerson
(r ¼ .366, P < .001). The low tolerance to stress was associ- et al51 considered that, globally, the insecure, attached, and
ated with feelings of confusion about one’s role in life (r ¼ dependent persons are prone to develop manifestations of trau-
.379, P < .001), bitterness, and anger (r ¼ .375, P < .001). The matic grief disorder. The results of the present study can contrib-
presence of children in the home is inversely correlated with ute to discriminate the impact of those 2 relational patterns,
difficulty in moving on with life (r ¼ .324, P < .001). At last, stressing individual differences in grief manifestations.
the social isolation is related to several symptoms of prolonged Concerning situational factors, only the image of the
grief, namely the intense feelings of emotional pain, sorrow, or patient deteriorated and disfigured was associated with PGD.
pangs of grief (r ¼ .330, P < .001); the confusion about one’s Although it was not frequent in this sample—eventually
role in life (r ¼ .361, P < .001); difficulty in accepting loss (r ¼ because of palliative care support—the image of the patient’s
.344, P < .001); and feeling that life is unfulfilling, empty, or deterioration and degradation must be considered an impor-
meaningless since the loss (r ¼ .360, P < .001). tant indicator of quality of care, with great impact on bereave-
ment. Yet, its inverse correlation with traumatic symptoms
suggests that the caregiver’s perception of the patient degra-
Discussion dation may contribute to awareness of death proximity, as
The present study aimed to identify the grief mediators associ- suggested by Hebert et al.52 Nevertheless, the memory of the
ated with PGD in a caregivers sample accompanied in patient’s deterioration was correlated with low tolerance to

Downloaded from ajh.sagepub.com by guest on February 3, 2015


6 American Journal of Hospice & Palliative Medicine®

stress, which suggests that this intrapersonal characteristic to low self-esteem and dysfunctional behaviors.57,58 It is also
adds vulnerability in these situations, justifying the prolonged understandable that the previous unresolved grief processes
grief reactions. promote insecure relationship patterns, given the constant
In the group of interpersonal factors, the existence of unre- threat perception of disappearance of the object of affection
solved family crises was found to be correlated with PGD. This that the actual loss brings to the fore.
is consonant with literature27,28 that states the conflicts are The common personal characteristic to both relational styles
harmful to the already emotionally intense family environment associated with PGD was the low tolerance to stress, as argued
during the terminal situation. Besides, the family is considered by Bowlby.48 The results suggest that persons with low toler-
to be the most important source of support in bereavement, spe- ance to stress experience more confusion concerning one’s role
cifically in widowhood.53 So, the lack of cohesion within the in life and feelings of bitterness after the loss of a significant
family system is obviously a deleterious factor.38 Traylor other. It is plausible that this personal characteristic is related
et al,27 relate family structure with the perceived lack of sup- to intolerance to uncertainty, which is described by Boelen59
port, personal factors, and relationship styles, which is consis- as the disposition to react negatively to situations perceived
tent with the results of our study. Indeed, unresolved family as uncertain. The author refers that this trait, involved in neu-
conflicts were correlated with the perception of less support, roticism, preoccupation states, and generalized anxiety, is par-
social isolation, and secondary losses but were also associated ticularly associated with traumatic grief manifestations.
with intrapersonal factors such as psychopathological antece-
dents, low tolerance to stress, low self-esteem, ambivalence,
and conflictual relationship with the deceased. Then, we Conclusion
believe that the factors that underlie the unresolved family The results of this prospective study allow us to make some
crises during loss tend to remain, contributing to prolonged observations concerning the influence of grief mediators,
grief reactions. detected since the pre-loss period, on the bereavement adjust-
These results support the original hypothesis that, besides ment. From an extensive list of factors identified in the literature,
relational factors, other situational factors and concurrent stres- only four were significantly associated with PGD, insecure rela-
sors related to the care-giving process interfere differentially in tionship with the patient who died; dependent relationship with
the grief manifestations. Moreover, we found that many other the patient who died; patient deterioration and disfiguration;
underlying factors contribute to prolonged grief manifestations. unresolved family crisis. Although these mediators are not
One of them is social isolation, usually recognized as an impor- frequent in this palliative caregivers’ sample, it is crucial to pay
tant mediator in adaptation to loss.54 Although we did not find attention to the particular factors associated with greater
it was correlated with PGD, this factor appears to be associated morbidity. The reciprocal influence among factors, as well as
with several symptoms, like the confusion about one’s role in their impact on specific symptoms, leads us to consider the exis-
life or a diminished sense of self, so life becomes unfulfilling, tence of a complex conjuncture of mediators associated with
empty, or meaningless. Besides, social isolation was also PGD.
related to feelings of longing or yearning for the deceased and
more difficulty in accepting loss. On the other hand, the pres-
ence of children at home may facilitate the moving on with life,
Limitations
despite the difficulties in coping with loss, especially in the Although the results were consistent with literature, these
case of widows.55 remarks are conditioned by the methodological limitations of
To better characterize the conjuncture associated with PGD, the study. First, the small sample size does not allow the gen-
we analyzed other mediators that interfere with those main vul- eralization of results. For this reason, also, it was not possible
nerability factors. The dependent relationship is related to to create subgroups within the caregiver’s population, accord-
pending issues with the deceased, as well as situational and ing to the kinship or the place of end-of-life care. Another lim-
interpersonal factors, such as exclusively domestic activities itation is the method of evaluation, exclusively based on the
and social isolation. The unique personal characteristic associ- professional’s perception. This is still protocolled in palliative
ated with dependency was low tolerance to stress. All these fac- care, given the inexistence of a valid and simple assessment
tors refer to difficulty in functioning in the absence of the tool to evaluate grief mediators. Besides, the dichotomous scale
deceased, which is consistent with the position of Johnson can be insufficient to evaluate the dispersion of results; apart
et al56 on bereaved dependency. from that, it limits the statistical analysis. Given these limita-
On the contrary, the insecure relationship appears mainly tions, we believe that this should be considered a pilot study,
associated with personal factors, namely, low tolerance to and the results should be subject to further research in a larger
stress, psychopathological antecedents, previous unresolved sample.
grief processes, and low self-esteem. Besides, there are circum-
stantial factors, such as concurrent stressors and secondary
losses. In literature, it is evident the relationship between inse-
Suggestions for Future Research
cure attachment and psychopathological symptoms. This asso- In future investigations, it would be important to deepen the
ciation is mediated by cognitive mechanisms which contribute knowledge about the associations among the mediators for a

Downloaded from ajh.sagepub.com by guest on February 3, 2015


Coelho et al 7

better understanding of the mechanisms that contribute to 9. Newson RS, Boelen PA, Hek K, Hofman A, Tiemeier H. The pre-
PGD. Specifically, little is known about the situational factor valence and characteristics of complicated grief in older adults.
statistically correlated with PGD—patient’s degradation or J Affect Disord. 2011;132(1-2):231-238.
deterioration image—and its interference in adaptation to 10. Kersting A, Brähler E, Glaesmer H, Wagner B. Prevalence of
bereavement. Besides, it is necessary to create a reliable self- complicated grief in a representative population-based sample.
assessment scale to evaluate grief mediators, specific to care- J Affect Disord. 2011;131(1-3):339-343.
giver population. 11. Carr D, House JS, Kessler RC, Nesse RM, Sonnega J, Wortman
C. Marital quality and psychological adjustment to widowhood
among older adults: a longitudinal analysis. J Gerontol B Psychol
Implications for Clinical Practice Sci Soc Sci. 2000;55(4):S197-S207.
The systematization of this screening procedure in palliative 12. Valdimarsdóttir U, Helgason ÁR, Fürst CJ, Adolfsson J, Steineck
care would expedite the identification of needs and the mobili- G. Awareness of husband’s impending death from cancer and
zation of resources in the prevention of morbidity associated long-term anxiety in widowhood: a nationwide follow-up. Pallia-
with prolonged grief. The results of this prospective study con- tive Med. 2004;18(5):432-443.
tribute to a better understanding of this specific population’s 13. Wright AA, Zhang B, Ray A, et al. Associations between end-of-life
characteristics, identifying the most deleterious mediators in discussions, patient mental health, medical care near death, and care-
grief trajectories. giver bereavement adjustment. JAMA. 2008;300(14):1665-1673.
14. Chiu YW, Huang CT, Yin SM, Huang YC, Chien CH, Chuang HY.
Determinants of complicated grief in caregivers who cared for termi-
Declaration of Conflicting Interests
nal cancer patients. Support Care Cancer. 2010;18(10):1321-1327.
The authors declared no potential conflicts of interest with respect to
15. Wright AA, Keating NL, Balboni TA, Matulonis UA, Block SD,
the research, authorship, and/or publication of this article.
Prigerson HG. Place of death: correlations with quality of life of
patients with cancer and predictors of bereaved caregivers’ mental
Funding health. J Clin Oncol. 2010;28(29):4457-4464.
The authors disclosed receipt of the following financial support for the 16. Carr D. A ‘‘good death’’ for whom? Quality of spouse’s death and
research, authorship, and/or publication of this article: This research was psychological distress among older widowed persons. J Health
supported by funding from Calouste Gulbenkian Foundation–Lisbon. Soc Behav. 2003;44(2):215-232.
17. Aoun SM, Connors SL, Priddis L, Breen LJ, Colyer S. Motor neu-
References rone disease family carers’ experiences of caring, palliative care
1. Fujisawa D, Miyashita M, Nakajima S, Ito M, Kato M, Kim Y. and bereavement: an exploratory qualitative study. Palliative
Prevalence and determinants of complicated grief in general pop- Med. 2012;26(6):842-850.
ulation. J Affect Disord. 2010;127(1-3):352-358. 18. Weibull A, Olesen F, Neergaard MA. Caregivers’ active role in
2. Guldin MB, Vedsted P, Zachariae R, Olesen F, Jensen AB. Com- palliative home care—to encourage or to dissuade? A qualitative
plicated grief and need for professional support in family care- descriptive study. BMC Palliative Care. 2008;7:1-18.
givers of cancer patients in palliative care: a longitudinal cohort 19. Butler LD, Field NP, Busch AL, Seplaki JE, Hastings TA, Spiegel
study. Support Care Cancer. 2012;20(8):1679-1685. D. Anticipating loss and other temporal stressors predict trau-
3. Stroebe MS, Folkman S, Hansson RO, Schut H. The prediction of matic stress symptoms among partners of metastatic/recurrent
bereavement outcome: development of an integrative risk factor breast cancer patients. Psychooncology. 2005;14(6):492-502.
framework. Soc Sci Med. 2006;63(9):2440-2451. 20. Winterling J, Wasteson E, Arving C, Johansson B, Glimelius B,
4. Parkes CM. Bereavement: Studies of Grief in Adult Life, 2nd ed. Nordin K. Factors associated with psychological distress and grief
Madison, CT: International Universities Press, Inc; 1986. resolution in surviving spouses of patients with advanced gastro-
5. Worden JW. Grief Counseling and Grief Therapy: A Handbook intestinal cancer. Support Care Cancer. 2010;18(11):1377-1384.
for the Mental Health, 3rd ed. New York: Springer Publishing 21. Song JI, Shin DW, Choi JY, et al. Quality of life and mental health
Company; 2002. in the bereaved family members of patients with terminal cancer.
6. Burke LA, Neimeyer RA. Prospective risk factors for complicated Psychooncology. 2012;21(11):1158-1166.
grief. In: Stroebe M, Schut H, van den Bout J, eds. Complicated 22. Elklit A, Reinholt N, Nielsen LH, Blum A, Lasgaard M. Posttrau-
Grief: Scientific Foundations for Health Care Professionals. New matic stress disorder among bereaved relatives of cancer patients.
York: Routledge; 2013:145-161. J Psychosoc Oncol. 2010;28(4):399-412.
7. Stroebe W, Shut H. Risk factors in bereavement outcome: a meth- 23. Li LW. From caregiving to bereavement: trajectories of depres-
odological and empirical review. In: Stroebe M, Hansson RO, sive symptoms among wife and daughter caregivers. J Gerontol
Schut H, Stroebe W, eds. Handbook of Bereavement Research B Psychol Sci Soc Sci. 2005;60(4):P190-P198.
and Practice: Advances in Theory and Intervention. Washington, 24. Boerner K, Schulz R, Horowitz A. Positive aspects of caregiving and
DC: American Psychological Association Press; 2008:349-371. adaptation to bereavement. Psychol Aging. 2004;19(4):668-675.
8. Ringdal GI, Jordhøy MS, Ringdal K, Kaasa S. Factors affecting 25. Shiozaki M, Hirai K, Dohke R, et al. Measuring the regret of bereaved
grief reactions in close family members to individuals who have family members regarding the decision to admit cancer patients to
died of cancer. J Pain Symptom Manag. 2001;22(6):1016-1026. palliative care units. Psychooncology. 2008;17(9):926-931.

Downloaded from ajh.sagepub.com by guest on February 3, 2015


8 American Journal of Hospice & Palliative Medicine®

26. Koop PM, Strang VR. The bereavement experience following 43. Kelly B, Edwards P, Synott R, Neil C, Baillie R, Battistutta D.
home-based family caregiving for persons with advanced cancer. Predictors of bereavement outcome for family carers of cancer
Clin Nurs Res. 2003;12(2):127-144. patients. Psychooncology. 1999;8(3):237-249.
27. Traylor ES, Hayslip B, Kaminski PL, York C. Relationships 44. Thomas K, Hudson P, Trauer T, Remedios C, Clarke D. Risk fac-
between grief and family system characteristics: a cross lagged tors for developing prolonged grief during bereavement in family
longitudinal analysis. Death Stud. 2003;27(7):575-601. carers of cancer patients in palliative care: a longitudinal study.
28. Waldrop DP, Kramer BJ, Skretny JA, Milch RA, Finn W. Final J Pain Symptom Manage. 2014;47(3):531-541.
transitions: family caregiving at the end of life. J Palliat Med. 45. Ellifritt J. Complicated bereavement: a national survey of poten-
2005;8(3):623-638. tial risk factors. Am J Hosp Palliat Med. 2003;20(2):114-120.
29. Chiu YW, Yin SM, Hsieh HY, Wu WC, Chuang HY, Huang CT. 46. Prigerson H, Vanderwerker L, Maciejewski P. Prolonged grief
Bereaved females are more likely to suffer from mood problems disorder: a case for inclusion in DSM. In: Stroebe M, Hansson
even if they do not meet the criteria for prolonged grief. Psy- RO, Schut H, Stroebe W, eds. Handbook of Bereavement
chooncology. 2011;20(10):1061-1068. Research and Practice: Advances in Theory and Intervention.
30. Gilbar O, Ben-zur H. Bereavement of spouse caregivers of cancer Washington, DC: American Psychological Association Press;
patients. Am J Orthopsychiat. 2002;72(3):422-432. 2008:165-186.
31. Macias C, Jones D, Harvey J, Barreira P, Harding C, Rodican C. 47. Delalibera M, Coelho A, Barbosa A. Validação do instrumento de
Bereavement in the context of serious mental illness. Psychiat avaliação do luto prolongado para a população portuguesa. Acta
Serv. 2004;55(4):421-426. Me´dica Port. 2011;24(6):935-942.
32. Vanderwerker LC, Jacobs SC, Parkes CM, Prigerson HG. An 48. Bowlby J. Apego e perda. Perda—tristeza e solida˜o, 3 vol., 3a ed.
exploration of associations between separation anxiety in child- (V. Dutra, Trad). São Paulo: Martins Fontes Editor; 2004:536.
hood and complicated grief in later life. J Nerv Mental Dis. 49. Van Doorn C, Kasl SV, Beery LC, Jacobs SC, Prigerson HG. The
2006;194(2):121-123. influence of marital quality and attachment styles on traumatic
33. Wayment HA, Vierthaler J. Attachment style and bereavement grief and depressive symptoms. J Nerv Ment Dis. 1998;186(9):
reactions. J Loss Trauma. 2002;7(2):129-149. 556-557.
34. Wijngaards-de Meij L, Stroebe M, Schut H, et al. Neuroticism and 50. Wayment HA, Vierthaler J. Attachment style and bereavement
attachment insecurity as predictors of bereavement outcome. reactions. J Loss Trauma. 2002;7(2):129-149.
J Rese Pers. 2007;41(2):498-505. 51. Prigerson H, Bierhals A, Kasl SV, et al. Traumatic grief as a risk
35. Gana K, K’delant P. The effects of temperament, character, and factor for mental and physical morbidity. Am J Psychiatry 1997;
defense mechanisms on grief severity among the elderly. J Affect 154(5):616-623.
Disord. 2011;128(1-2):128-134. 52. Hebert RS, Dang Q, Schulz R. Preparedness for the death of a
36. Taga KA, Friedman HS, Martin LR. Early personality traits as loved one and mental health in bereaved caregivers of patients
predictors of mortality risk following conjugal bereavement. with dementia: findings from the REACH study. J Palliat Med.
J Pers. 2009;77(3):669-690. 2006;9(3):683-693.
37. Eisma MC, Stroebe MS, Schut HA, Stroebe W, Boelen PA, van 53. Bankoff EA. Social support and adaptation to widowhood. J Mar-
den Bout J. Avoidance processes mediate the relationship between riage Fam. 1983;45(4):827-839.
rumination and symptoms of complicated grief and depression fol- 54. Norris FH, Murrell SA. Social support, life events, and stress as
lowing loss. J Abnorm Psychol. 2013;122(4):961-970. modifiers of adjustment to bereavement by older adults. Psychol
38. Allen JY, Haley WE, Small BJ, Schonwetter RS, McMillan SC. Aging. 1990;5(3):429-436.
Bereavement among hospice caregivers of cancer patients 55. Gass-Sternas KA. Single parent windows: stressors, appraisal,
one year following loss: predictors of grief, complicated coping, resources, grieving responses and health. J Marriage
grief, and symptoms of depression. J Palliat Med. 2013; Fam. 1994;20(3-4):411-445.
16(7):745-751. 56. Johnson JG, Vanderwerker LC, Bornstein RF, Zhang B, Prigerson
39. Kissane DW, Bloch S, Onghena P, McKenzie DP. The Melbourne HG. Development and validation of an instrument for the assess-
family grief study, ll: Psychosocial morbidity and grief in ment of dependency among bereaved persons. J Psychopathol
bereaved families. Am J Psychiatry. 1996;153(5):659-666. Behav Assess. 2006;28(4):261-270.
40. Kissane D, McKenzie M, Bloch S, Moskowitz C, McKenzie D, 57. Fortuna K, Roisman GI. Insecurity, stress, and symptoms of psy-
O’Neill I. Family focused grief therapy: a randomized, controlled chopathology: contrasting results from self-reports versus inter-
trial in palliative care and bereavement. Am J Psychiatry. 2006; views of adult attachment. Attach Hum Dev. 2008;10(1):11-28.
163(7):1208-1218. 58. Hankin BL, Kassel JD, Abela JR. Adult attachment dimensions
41. Kramer BJ, Kavanaugh M, Trentham-Dietz A, Walsh M, Yonker and specificity of emotional distress symptoms: prospective
JA. Complicated grief symptoms in caregivers of persons with investigations of cognitive risk and interpersonal stress generation
lung cancer: the role of family conflict, intrapsychic strains, and as mediating mechanisms. Pers Soc Psychol Bull. 2005;31(1):
hospice utilization. OMEGA-J Death Dying. 2010;62(3): 136-151.
201-220. 59. Boelen P. Intolerance of uncertainty and emotional distress fol-
42. Castle J, Phillips WL. Grief rituals: aspects that facilitate adjust- lowing the death of a loved one. Anxiety Stress Coping. 2010;
ment to bereavement. J Loss Trauma. 2003;8(1):41-71. 23(4):471-478.

Downloaded from ajh.sagepub.com by guest on February 3, 2015

You might also like