Counseling/Pastoral Care
Palliative Care Caregivers’ Grief Mediators: A Prospective Study
American Journal of Hospice & Palliative Medicine® 1-8 ª The Author(s) 2015 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114565660 ajhpm.sagepub.com
Alexandra M. Coelho, MD1, Mayra A. Delalibera, MD2, and Anto´nio 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, unresolved family crisis, and the perceived deterioration and disfigurement of the patient. The results show relational factors are relevant, 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 A substantial number of family caregivers of seriously ill patients are at risk of developing symptoms of complicated grief following the patient’s death.1 The early identification of those at risk of developing grief complications is useful as a main indicator of the individual vulnerability, so it became a current practice in palliative care, allowing a preventive intervention, as well as the rational allocation of resources in bereavement support.2 Many authors3-6 aimed to identify the personal, interpersonal, and situational mediators that affect the bereavement outcomes. Based on the most recent conceptualization of Stroebe and Shut,7 we developed a comprehensive classification of grief mediators applied to caregivers’ population which distinguishes between specific and general factors. Specific ones are related to characteristics of loss; general factors do not result from loss, but from personal and social causes, and affect the health of the global population (eg, depression), although they might, as well, interfere in grief reaction. The first group includes, on the one hand, the demographic characteristics of the patients who died 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 (demographic characteristics of bereaved, psychiatric antecedents, attachment style, way of coping, and personality) and interpersonal (family dynamics, cultural, and religious aspects). Respecting the object of loss, in the specific factors group, Ringdal et al8 found that the youth of the deceased is the demographic characteristic that interferes most in the process of grief. However, the death of a spouse or child has been also strongly associated with complicated grief.9,10 The relational aspects
seem to be a significant mediator in spouse loss: widowhood was associated with anxiety in those who were highly dependent on their partners; yearning and longing for the deceased spouse was also correlated with proximity and dependency. This is more evident in widows who received instrumental support from the deceased, when compared with the masculine population that presented the same level of dependency.11 Regarding the situational factors, literature focuses on the circumstances of death. In case of advanced disease, the vulnerability comes from the insufficient communication that hinders the awareness of the impending death.12,13 Taking into account the importance of quality of end-of-life care, place of death also becomes an important mediator.14 The death in context of hospice is associated with a better outcome compared to intensive care unit.15 The perception of medical negligence was equally related to difficulties in grief due to the anger and revolt that it causes on the bereaved person.16 Beyond that, caregivers’ grief is affected by the physical and emotional effort dispended during patient’s assistance.17-21 The distress level is associated with the perception of increased
1
Palliative Care Unit, Hospital Santa Maria, Academic Center of Studies and Intervention in Grief, Bioethics Center, Faculty of Medicine, University of Lisbon, Lisbon, Portugal 2 Palliative Care Unit, Hospital Santa Maria, Higher Institute of Applied Psychology, Lisbon, Portugal Corresponding Author: Alexandra M. Coelho, Centro de Bioe´tica da Faculdade de Medicina da Universidade de Lisboa, Avenida Professor Egas Moniz, 1649-028 Lisboa, Portugal. Email: [email protected]
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American Journal of Hospice & Palliative Medicine®
2 difficulty in assistance to the patient, considering aggravating factors such as the patient’s problematic behavior, the intensity of care, the long duration of the disease,22 and the depletion of the personal gains of the caregiver role.23,24 During bereavement, many caregivers present intrusive thoughts related to the end-of-life decisions25 and the constant perception of the patient’s physical declination.26 Other situational risk factors are the interpersonal conflicts that affect family cohesion, some of them resulting from the difficulty in combining the caregiver role with other family and social activities.27,28 Concerning the general factors, we start by mentioning the intrapersonal dimension. The gender differences have been widely studied. The female gender is often associated with more intense manifestations of grief.8,29,30 Another demographic characteristic that influences the process of grief is the age of the deceased. In adult life, the elderly widowers have been identified as the most vulnerable.8,30 The predisposition to develop maladaptive patterns of grief is also related to the presence of antecedents, such as psychiatric disorder history,31 separation experiences in infancy,32 previous significant losses,30 and the anxious-ambivalent style of attachment.33 Concerning personality characteristics, neuroticism assumes particular relevance in the grief process.34 Immature defensive styles, such as denial and distortion of external reality, are considered maladaptive in grief,35 as well as avoidant36 and ruminative strategies of coping.37 In the interpersonal factors group, the lack of family support was identified as the best predictor for maladjustment to loss.38 Dysfunctional families, characterized by low cohesion, high conflict, and reduced capacity for emotional expression, have been associated with worst adjustment to loss and psychosocial morbidity.39-41 The family conflicts related to end-of-life decisions, discussions, disagreements, insults, and resentments between relatives were highlighted as an important agent of grief complications.41 An additional aspect concerns the cultural and religious influence. There is evidence that sharing memories of the deceased with others, the use of symbolic objects and the practice of meaningful rituals are facilitators of adaptation to loss.42 Although there is much research on grief mediators in general bereaved population, few studies assessed prospectively the population of caregivers in palliative care. Kelly et al43 evaluated family carers referred to a palliative home care service previous to the death and 4 months after it. Their results stressed that the relationship with the patient was a significant predictor of grief symptoms, along with other factors, such as the greater number of adverse life events, carer’s coping responses, past bereavement and separation experiences, and greater severity of patient’s illness at the time of palliative care referral. Another study assessed caregivers14 who cared for terminally ill patients with cancer in the hospice ward or who received shared-care consultation. The interviews were carried out before the death and between 6 and 14 months afterward. The results demonstrated that spouse and parent–child relationship, female gender, shorter caring duration, no religious belief, unavailable family support, history of mood comorbidity, no medical disease history, and no hospice ward stays were
significant determinants of complicated grief for caregivers. A recent study44 followed the caregivers admitted to palliative care services since the stage prior to death until 6 and 13 months after it. They identified, as risk factors for prolonged grief symptoms, widowhood, dependency relationship with the deceased, high impact of caring on schedule, poor family functioning, and low levels of optimism. The results from these studies are not sufficiently congruent to identify the main mediators of grief complications in the palliative caregiver population. Moreover, according to Worden,5 the predictors of complicated grief in a population cannot be generalized. This author suggests the use of a preventive model, based on descriptive studies, in order to establish more accurately the indicators of increased risk of complicated grief for each population. This pilot study is unique in its prospective assessment of family carers of patients referred to a palliative care service in Portugal. Therefore, the main objective of the present study is to describe the prolonged grief mediators in a Portuguese sample of caregivers whose relatives were accompanied in palliative care. A second aim is to verify whether specific risk factors are associated with different grief symptoms. Finally, we intend to describe the mutual relationship between risk factors. We hypothesize that, besides relational factors, there are other situational factors, related to care giving process, that contribute differentially to prolonged grief manifestation. Besides, we assume that these variables combine each other to create a complex influence system that determines the grief trajectories.
Method Sample and Setting It has been constituted a convenient sample of caregivers of patients admitted to the Palliative Care Unit of the Hospital of Santa Maria in a 9-month period. The inclusion criteria were older than 18 years, be a relative of a patient accompanied in palliative care, and be informally involved in the care of the patient.
Instruments The assessment of grief mediators was performed using a list of grief mediators. To our knowledge, there is no self-report assessment tool to easily identify the individual vulnerability and describe risk factors for grief complications. Ellifritt45 developed a Bereavement Risk Questionnaire to rate 19 possible risk factors, according to bereavement professionals, in a nationwide study. A modified version of that list was created for this study, based on empirical data from narrative review of literature, to assess individual risk to grief complications. We used proxy report from health professionals taking in account Ellifritt’s position that health professionals are able to identify risk factors. Besides, we assume that family caregivers, facing the terminal illness of the patient, are affected by emotional disturbance, so they lack insight about many problems that may interfere in grief process (eg, relational aspects with the patient, denial/avoidance mechanisms, and previous unresolved losses).
Downloaded from ajh.sagepub.com at UNIV OF FLORIDA on November 14, 2015
Coelho et al
3
Based on the classification described earlier (specific and general factors), the risk factors were distributed in the following categories: specific factors: (1) object of loss: demographics of deceased, kinship, relational aspects (eg, ambivalence, dependency, high-intensity relationship, and insecure relationship) and (2) loss circumstances, for example, uncontrolled symptoms, prolonged disease, dysfunctional relation with professionals, concurrent stressors; general factors: (1) intrapersonal factors, for example, youth of deceased, psychopathological antecedents, denial/avoidance coping mechanisms, previous unresolved grief, lower resistance to stress, reduced expression of feelings and (2) interpersonal factors, for example, lack of social support, presence of children at home, family conflicts, impossibility to accomplish religious rituals. The mediators were evaluated in a dichotomous scale (present/absent). To assess prolonged grief disorder (PGD), we used the PG-13, developed by Prigerson et al,46 validated to Portuguese population by Delalibera et al47 It consists of 13 items, each expressed in a Likert-type symptom frequency scale, ranging from 1 (almost never) to 5 (several times a day), for example, ‘‘in the past month, how often have you felt yourself longing or yearning for the person you lost?’’ ‘‘have you had trouble accepting the loss?’’ except for the answers to items 2 and 13, which are dichotomous (categorized as yes/no), for example ‘‘have you had the experience at least daily, for a period of at least 6 months?’’ and ‘‘have you experienced a significant reduction in social, occupational, or other important areas of functioning (eg, domestic responsibilities)?’’ Collectively, these items are a set of symptoms and signs (feelings, thoughts, and actions) in response to the loss of a significant loved one who are persistently demonstrated for a minimum period of 6 months and are associated with a significant degree of functional disorder, such as occupational or social disability. Detailed information about the course of illness and death was obtained by consulting the deceased patient’s medical record.
Table 1. Demographic Characterization.
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 the informal evaluation of complicated grief mediators, which is part of professionals’ current practice during assistance in palliative care, before and after the patient’s death. The families were selected to participate in the study only when the team had sufficient information on the dimensions assessed. The PG-13 was systematically administered by telephone contact to all bereaved relatives, 6 months after the death of the patient, during 8 months. Data concerning diagnosis, length of disease, and place of death were collected from the patients’ clinical files. For the statistical analysis, we used the SPSS 20.0 program. The occurrence rate of grief mediators was assessed based on percentage value. Given the nominal nature of the variables, we conducted the chi-square test to relate grief mediators with PGD scores, with a level of significance set at 0.05. The research project was approved by the Ethics Committee of the Santa Maria Hospital (CHLN-HM).
Participants (n ¼ 64)
Patients who died
58.20 (14.07) 15-84
69.07 (10.85) 40-89
Age, mean (SD) Amplitude Gender, n (%) Male Female Marital status, n (%) Single Married Widower Divorced Kinship, n (%) Partner Offspring Parent Brother Others
11 (17.2) 53 (82.8)
33 (51.6) 31 (48.4)
5 (8.3) 20 (33.3) 34 (56.7) 1 (1.7)
0 46 15 3
(0) (71.9) (23.4) (4.7)
33 (51.6) 20 (31.2) 2 (3.1) 3 (4.7) 6 (9.4)
Abbreviation: SD, standard deviation.
Table 2. Circumstances of Illness and Death. Time since diagnosis Until 6 months 6-12 months 1-2 years 2-3 years More than 3 years
n (%) 22 10 5 8 10
Follow-up period in Palliative Care (PC) Single assessment Up to 1 week 1-4 weeks 1-3 months 3-6 months 6 months-1 year
12 9 18 13 7 2
Months after death
(40.0) Mean (SD) (18.2) Mode (9.1) Amplitude (14.5) (18.2)
7.09 (2.97) 6.00 6-18
n (%)
Place of death
n (%)
(19.7) (14.8) (29.5) (21.3) (11.5) (3.3)
Hospital Santa Maria Home Palliative Care Unit Other hospital Other institution
42 13 2 4 1
(67.7) (21.0) (3.2) (6.5) (1.6)
Results This study’s sample is composed of 64 family caregivers. The majority is female (82.8%), widows (56.7%), with a mean age of 58.20. Mostly, they have lost their partner (51.6%) or a parent (31.3%). The mean age of deceased was 69.07 (Table 1). The patients were almost exclusively oncologic (96.6%), the most frequent gastric cancer (27.2%). The other patients had cardiovascular disease. Most patients had a relatively brief period of disease, considering that in 40% of the cases, there were only 6 months between diagnosis and death. The time of assistance in palliative care was, in most cases, until 3 months (81.3%); few patients were followed for a longer period. The place of death was mostly in hospital (67.7%), although 21% died at home. The time since death was, on average, 7.09 months, ranging from 6 to 18 months (Table 2). In the population of 64 bereaved, a total of 17 (26.6%) met the diagnostic criteria for PGD. The influence of
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American Journal of Hospice & Palliative Medicine®
4 Table 3. Grief Mediators Frequency and Association With PGD.
FEO FEO1 FEO2 FEO3 FEO4 FEO5 FEO6 FEO7 FES FES1 FES2 FES3 FES4 FES5 FES6 FES7 FES8 FES9 FES10 FIA FIA2 FIA3 FIA4 FIA5 FIA6 FIA7 FIA8 FIA9 FIA10 FIA11 FIA12 FIE FIE1 FIE2 FIE3 FIE4
Specific factors–object of loss High intensity of relationship Ambivalent relationship Dependency relationship Conflictual relationship Youth of deceased Truncated projects/pending issues Insecure relationship Specific factors—situational Lack of symptom control Dysfunctional relationship with health professionals Death associated with therapeutic obstinacy Diagnosis difficulties Process of disease too long Patient deteriorated, disfigured Responsibility for the death Concurrent stressors/secondary losses Low socioeconomic level Exclusively domestic activities General factors—intrapersonal Psychopathological antecedents Previous attempts of suicide Early loss of parents Previous unresolved grief processes Youth of bereaved Very intense reactions of bitterness/anger Reduced expression of feelings Feelings of guilt Low tolerance to stress Low self-esteem Denial/avoidance mechanisms General factor—interpersonal Lack of social and family support Presence of children (
Palliative Care Caregivers’ Grief Mediators: A Prospective Study
American Journal of Hospice & Palliative Medicine® 1-8 ª The Author(s) 2015 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114565660 ajhpm.sagepub.com
Alexandra M. Coelho, MD1, Mayra A. Delalibera, MD2, and Anto´nio 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, unresolved family crisis, and the perceived deterioration and disfigurement of the patient. The results show relational factors are relevant, 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 A substantial number of family caregivers of seriously ill patients are at risk of developing symptoms of complicated grief following the patient’s death.1 The early identification of those at risk of developing grief complications is useful as a main indicator of the individual vulnerability, so it became a current practice in palliative care, allowing a preventive intervention, as well as the rational allocation of resources in bereavement support.2 Many authors3-6 aimed to identify the personal, interpersonal, and situational mediators that affect the bereavement outcomes. Based on the most recent conceptualization of Stroebe and Shut,7 we developed a comprehensive classification of grief mediators applied to caregivers’ population which distinguishes between specific and general factors. Specific ones are related to characteristics of loss; general factors do not result from loss, but from personal and social causes, and affect the health of the global population (eg, depression), although they might, as well, interfere in grief reaction. The first group includes, on the one hand, the demographic characteristics of the patients who died 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 (demographic characteristics of bereaved, psychiatric antecedents, attachment style, way of coping, and personality) and interpersonal (family dynamics, cultural, and religious aspects). Respecting the object of loss, in the specific factors group, Ringdal et al8 found that the youth of the deceased is the demographic characteristic that interferes most in the process of grief. However, the death of a spouse or child has been also strongly associated with complicated grief.9,10 The relational aspects
seem to be a significant mediator in spouse loss: widowhood was associated with anxiety in those who were highly dependent on their partners; yearning and longing for the deceased spouse was also correlated with proximity and dependency. This is more evident in widows who received instrumental support from the deceased, when compared with the masculine population that presented the same level of dependency.11 Regarding the situational factors, literature focuses on the circumstances of death. In case of advanced disease, the vulnerability comes from the insufficient communication that hinders the awareness of the impending death.12,13 Taking into account the importance of quality of end-of-life care, place of death also becomes an important mediator.14 The death in context of hospice is associated with a better outcome compared to intensive care unit.15 The perception of medical negligence was equally related to difficulties in grief due to the anger and revolt that it causes on the bereaved person.16 Beyond that, caregivers’ grief is affected by the physical and emotional effort dispended during patient’s assistance.17-21 The distress level is associated with the perception of increased
1
Palliative Care Unit, Hospital Santa Maria, Academic Center of Studies and Intervention in Grief, Bioethics Center, Faculty of Medicine, University of Lisbon, Lisbon, Portugal 2 Palliative Care Unit, Hospital Santa Maria, Higher Institute of Applied Psychology, Lisbon, Portugal Corresponding Author: Alexandra M. Coelho, Centro de Bioe´tica da Faculdade de Medicina da Universidade de Lisboa, Avenida Professor Egas Moniz, 1649-028 Lisboa, Portugal. Email: [email protected]
Downloaded from ajh.sagepub.com at UNIV OF FLORIDA on November 14, 2015
American Journal of Hospice & Palliative Medicine®
2 difficulty in assistance to the patient, considering aggravating factors such as the patient’s problematic behavior, the intensity of care, the long duration of the disease,22 and the depletion of the personal gains of the caregiver role.23,24 During bereavement, many caregivers present intrusive thoughts related to the end-of-life decisions25 and the constant perception of the patient’s physical declination.26 Other situational risk factors are the interpersonal conflicts that affect family cohesion, some of them resulting from the difficulty in combining the caregiver role with other family and social activities.27,28 Concerning the general factors, we start by mentioning the intrapersonal dimension. The gender differences have been widely studied. The female gender is often associated with more intense manifestations of grief.8,29,30 Another demographic characteristic that influences the process of grief is the age of the deceased. In adult life, the elderly widowers have been identified as the most vulnerable.8,30 The predisposition to develop maladaptive patterns of grief is also related to the presence of antecedents, such as psychiatric disorder history,31 separation experiences in infancy,32 previous significant losses,30 and the anxious-ambivalent style of attachment.33 Concerning personality characteristics, neuroticism assumes particular relevance in the grief process.34 Immature defensive styles, such as denial and distortion of external reality, are considered maladaptive in grief,35 as well as avoidant36 and ruminative strategies of coping.37 In the interpersonal factors group, the lack of family support was identified as the best predictor for maladjustment to loss.38 Dysfunctional families, characterized by low cohesion, high conflict, and reduced capacity for emotional expression, have been associated with worst adjustment to loss and psychosocial morbidity.39-41 The family conflicts related to end-of-life decisions, discussions, disagreements, insults, and resentments between relatives were highlighted as an important agent of grief complications.41 An additional aspect concerns the cultural and religious influence. There is evidence that sharing memories of the deceased with others, the use of symbolic objects and the practice of meaningful rituals are facilitators of adaptation to loss.42 Although there is much research on grief mediators in general bereaved population, few studies assessed prospectively the population of caregivers in palliative care. Kelly et al43 evaluated family carers referred to a palliative home care service previous to the death and 4 months after it. Their results stressed that the relationship with the patient was a significant predictor of grief symptoms, along with other factors, such as the greater number of adverse life events, carer’s coping responses, past bereavement and separation experiences, and greater severity of patient’s illness at the time of palliative care referral. Another study assessed caregivers14 who cared for terminally ill patients with cancer in the hospice ward or who received shared-care consultation. The interviews were carried out before the death and between 6 and 14 months afterward. The results demonstrated that spouse and parent–child relationship, female gender, shorter caring duration, no religious belief, unavailable family support, history of mood comorbidity, no medical disease history, and no hospice ward stays were
significant determinants of complicated grief for caregivers. A recent study44 followed the caregivers admitted to palliative care services since the stage prior to death until 6 and 13 months after it. They identified, as risk factors for prolonged grief symptoms, widowhood, dependency relationship with the deceased, high impact of caring on schedule, poor family functioning, and low levels of optimism. The results from these studies are not sufficiently congruent to identify the main mediators of grief complications in the palliative caregiver population. Moreover, according to Worden,5 the predictors of complicated grief in a population cannot be generalized. This author suggests the use of a preventive model, based on descriptive studies, in order to establish more accurately the indicators of increased risk of complicated grief for each population. This pilot study is unique in its prospective assessment of family carers of patients referred to a palliative care service in Portugal. Therefore, the main objective of the present study is to describe the prolonged grief mediators in a Portuguese sample of caregivers whose relatives were accompanied in palliative care. A second aim is to verify whether specific risk factors are associated with different grief symptoms. Finally, we intend to describe the mutual relationship between risk factors. We hypothesize that, besides relational factors, there are other situational factors, related to care giving process, that contribute differentially to prolonged grief manifestation. Besides, we assume that these variables combine each other to create a complex influence system that determines the grief trajectories.
Method Sample and Setting It has been constituted a convenient sample of caregivers of patients admitted to the Palliative Care Unit of the Hospital of Santa Maria in a 9-month period. The inclusion criteria were older than 18 years, be a relative of a patient accompanied in palliative care, and be informally involved in the care of the patient.
Instruments The assessment of grief mediators was performed using a list of grief mediators. To our knowledge, there is no self-report assessment tool to easily identify the individual vulnerability and describe risk factors for grief complications. Ellifritt45 developed a Bereavement Risk Questionnaire to rate 19 possible risk factors, according to bereavement professionals, in a nationwide study. A modified version of that list was created for this study, based on empirical data from narrative review of literature, to assess individual risk to grief complications. We used proxy report from health professionals taking in account Ellifritt’s position that health professionals are able to identify risk factors. Besides, we assume that family caregivers, facing the terminal illness of the patient, are affected by emotional disturbance, so they lack insight about many problems that may interfere in grief process (eg, relational aspects with the patient, denial/avoidance mechanisms, and previous unresolved losses).
Downloaded from ajh.sagepub.com at UNIV OF FLORIDA on November 14, 2015
Coelho et al
3
Based on the classification described earlier (specific and general factors), the risk factors were distributed in the following categories: specific factors: (1) object of loss: demographics of deceased, kinship, relational aspects (eg, ambivalence, dependency, high-intensity relationship, and insecure relationship) and (2) loss circumstances, for example, uncontrolled symptoms, prolonged disease, dysfunctional relation with professionals, concurrent stressors; general factors: (1) intrapersonal factors, for example, youth of deceased, psychopathological antecedents, denial/avoidance coping mechanisms, previous unresolved grief, lower resistance to stress, reduced expression of feelings and (2) interpersonal factors, for example, lack of social support, presence of children at home, family conflicts, impossibility to accomplish religious rituals. The mediators were evaluated in a dichotomous scale (present/absent). To assess prolonged grief disorder (PGD), we used the PG-13, developed by Prigerson et al,46 validated to Portuguese population by Delalibera et al47 It consists of 13 items, each expressed in a Likert-type symptom frequency scale, ranging from 1 (almost never) to 5 (several times a day), for example, ‘‘in the past month, how often have you felt yourself longing or yearning for the person you lost?’’ ‘‘have you had trouble accepting the loss?’’ except for the answers to items 2 and 13, which are dichotomous (categorized as yes/no), for example ‘‘have you had the experience at least daily, for a period of at least 6 months?’’ and ‘‘have you experienced a significant reduction in social, occupational, or other important areas of functioning (eg, domestic responsibilities)?’’ Collectively, these items are a set of symptoms and signs (feelings, thoughts, and actions) in response to the loss of a significant loved one who are persistently demonstrated for a minimum period of 6 months and are associated with a significant degree of functional disorder, such as occupational or social disability. Detailed information about the course of illness and death was obtained by consulting the deceased patient’s medical record.
Table 1. Demographic Characterization.
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 the informal evaluation of complicated grief mediators, which is part of professionals’ current practice during assistance in palliative care, before and after the patient’s death. The families were selected to participate in the study only when the team had sufficient information on the dimensions assessed. The PG-13 was systematically administered by telephone contact to all bereaved relatives, 6 months after the death of the patient, during 8 months. Data concerning diagnosis, length of disease, and place of death were collected from the patients’ clinical files. For the statistical analysis, we used the SPSS 20.0 program. The occurrence rate of grief mediators was assessed based on percentage value. Given the nominal nature of the variables, we conducted the chi-square test to relate grief mediators with PGD scores, with a level of significance set at 0.05. The research project was approved by the Ethics Committee of the Santa Maria Hospital (CHLN-HM).
Participants (n ¼ 64)
Patients who died
58.20 (14.07) 15-84
69.07 (10.85) 40-89
Age, mean (SD) Amplitude Gender, n (%) Male Female Marital status, n (%) Single Married Widower Divorced Kinship, n (%) Partner Offspring Parent Brother Others
11 (17.2) 53 (82.8)
33 (51.6) 31 (48.4)
5 (8.3) 20 (33.3) 34 (56.7) 1 (1.7)
0 46 15 3
(0) (71.9) (23.4) (4.7)
33 (51.6) 20 (31.2) 2 (3.1) 3 (4.7) 6 (9.4)
Abbreviation: SD, standard deviation.
Table 2. Circumstances of Illness and Death. Time since diagnosis Until 6 months 6-12 months 1-2 years 2-3 years More than 3 years
n (%) 22 10 5 8 10
Follow-up period in Palliative Care (PC) Single assessment Up to 1 week 1-4 weeks 1-3 months 3-6 months 6 months-1 year
12 9 18 13 7 2
Months after death
(40.0) Mean (SD) (18.2) Mode (9.1) Amplitude (14.5) (18.2)
7.09 (2.97) 6.00 6-18
n (%)
Place of death
n (%)
(19.7) (14.8) (29.5) (21.3) (11.5) (3.3)
Hospital Santa Maria Home Palliative Care Unit Other hospital Other institution
42 13 2 4 1
(67.7) (21.0) (3.2) (6.5) (1.6)
Results This study’s sample is composed of 64 family caregivers. The majority is female (82.8%), widows (56.7%), with a mean age of 58.20. Mostly, they have lost their partner (51.6%) or a parent (31.3%). The mean age of deceased was 69.07 (Table 1). The patients were almost exclusively oncologic (96.6%), the most frequent gastric cancer (27.2%). The other patients had cardiovascular disease. Most patients had a relatively brief period of disease, considering that in 40% of the cases, there were only 6 months between diagnosis and death. The time of assistance in palliative care was, in most cases, until 3 months (81.3%); few patients were followed for a longer period. The place of death was mostly in hospital (67.7%), although 21% died at home. The time since death was, on average, 7.09 months, ranging from 6 to 18 months (Table 2). In the population of 64 bereaved, a total of 17 (26.6%) met the diagnostic criteria for PGD. The influence of
Downloaded from ajh.sagepub.com at UNIV OF FLORIDA on November 14, 2015
American Journal of Hospice & Palliative Medicine®
4 Table 3. Grief Mediators Frequency and Association With PGD.
FEO FEO1 FEO2 FEO3 FEO4 FEO5 FEO6 FEO7 FES FES1 FES2 FES3 FES4 FES5 FES6 FES7 FES8 FES9 FES10 FIA FIA2 FIA3 FIA4 FIA5 FIA6 FIA7 FIA8 FIA9 FIA10 FIA11 FIA12 FIE FIE1 FIE2 FIE3 FIE4
Specific factors–object of loss High intensity of relationship Ambivalent relationship Dependency relationship Conflictual relationship Youth of deceased Truncated projects/pending issues Insecure relationship Specific factors—situational Lack of symptom control Dysfunctional relationship with health professionals Death associated with therapeutic obstinacy Diagnosis difficulties Process of disease too long Patient deteriorated, disfigured Responsibility for the death Concurrent stressors/secondary losses Low socioeconomic level Exclusively domestic activities General factors—intrapersonal Psychopathological antecedents Previous attempts of suicide Early loss of parents Previous unresolved grief processes Youth of bereaved Very intense reactions of bitterness/anger Reduced expression of feelings Feelings of guilt Low tolerance to stress Low self-esteem Denial/avoidance mechanisms General factor—interpersonal Lack of social and family support Presence of children (
