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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
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).
% Chi-square P
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,
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
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
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
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-
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