Caregiver Grief Research Articles

PC-FACS

PC-FACS

Family Caregiver Grief and Depression Outcomes from the ENABLE III Randomized Controlled Trial (FR440B)

Family Caregiver Grief and Depression Outcomes from the ENABLE III Randomized Controlled Trial (FR440B)

Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers.

Extensive evidence shows that well over 50% of people prefer to be cared for and to die at home provided circumstances allow choice. Despite best efforts and policies, one-third or less of all deaths take place at home in many countries of the world. 1. to quantify the effect of home palliative care services for adult patients with advanced illness and their family caregivers on patients' odds of dying at home; 2. to examine the clinical effectiveness of home palliative care services on other outcomes for patients and their caregivers such as symptom control, quality of life, caregiver distress and satisfaction with care; 3. to compare the resource use and costs associated with these services; 4. to critically appraise and summarize the current evidence on cost-effectiveness. We searched 12 electronic databases up to November 2012. We checked the reference lists of all included studies, 49 relevant systematic reviews, four key textbooks and recent conference abstracts. We contacted 17 experts and researchers for unpublished data. We included randomised controlled trials (RCTs), controlled clinical trials (CCTs), controlled before and after studies (CBAs) and interrupted time series (ITSs) evaluating the impact of home palliative care services on outcomes for adults with advanced illness or their family caregivers, or both. One review author assessed the identified titles and abstracts. Two independent reviewers performed assessment of all potentially relevant studies, data extraction and assessment of methodological quality. We carried out meta-analysis where appropriate and calculated numbers needed to treat to benefit (NNTBs) for the primary outcome (death at home). We identified 23 studies (16 RCTs, 6 of high quality), including 37,561 participants and 4042 family caregivers, largely with advanced cancer but also congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), HIV/AIDS and multiple sclerosis (MS), among other conditions. Meta-analysis showed increased odds of dying at home (odds ratio (OR) 2.21, 95% CI 1.31 to 3.71; Z = 2.98, P value = 0.003; Chi2 = 20.57, degrees of freedom (df) = 6, P value = 0.002; I2 = 71%; NNTB 5, 95% CI 3 to 14 (seven trials with 1222 participants, three of high quality)). In addition, narrative synthesis showed evidence of small but statistically significant beneficial effects of home palliative care services compared to usual care on reducing symptom burden for patients (three trials, two of high quality, and one CBA with 2107 participants) and of no effect on caregiver grief (three RCTs, two of high quality, and one CBA with 2113 caregivers). Evidence on cost-effectiveness (six studies) is inconclusive. The results provide clear and reliable evidence that home palliative care increases the chance of dying at home and reduces symptom burden in particular for patients with cancer, without impacting on caregiver grief. This justifies providing home palliative care for patients who wish to die at home. More work is needed to study cost-effectiveness especially for people with non-malignant conditions, assessing place of death and appropriate outcomes that are sensitive to change and valid in these populations, and to compare different models of home palliative care, in powered studies.

The Caregiver Grief Scale: Development, Exploratory and Confirmatory Factor Analysis, and Validation

ABSTRACTObjective: Pre-death grief is among the most debilitating aspects of dementia caregiving and can have adverse impacts on caregivers’ physical and mental health. The specific assessment of grief is therefore an important prerequisite for both clinical and research settings. The present study aimed to build upon previous research and develop a scale for the measurement of grief in dementia caregivers.Methods: An initial pool of 21 items was created through both the selection of appropriate items from existing instruments and the development of new items. 229 caregivers (Mage = 63.8 years ±10.5) completed the scale along with measures of construct validity. The sample was randomly split in half and exploratory factor analysis was conducted on the first data set. The established factor structure was then subjected to confirmatory factor analysis on the second data set.Results: Convincing goodness-of-fit indices emerged for a four-factor model, with factors reflecting different aspects of caregiver grief (i.e., Emotional Pain, Relational Loss, Absolute Loss, and Acceptance of Loss). The total scale and subscales yielded high internal consistency reliabilities (Cronbach’s α = .67–.89) and construct validity coefficients.Conclusions: The Caregiver Grief Scale is now available for use in clinical and research settings to aid therapists and researchers in assessing the burden caregivers experience due to grief and evaluating the effects of grief-specific interventions.

Applicability of the pre-death grief concept to dementia family caregivers in Asia.

ObjectivePre‐death grief is prevalent among dementia family caregivers. When unaddressed, it produces adverse outcomes. With its research primarily conducted in Caucasians, its applicability to non‐Caucasians is uncertain. We explore the existence and the characteristics of pre‐death grief in a multi‐ethnic Asian population using an established pre‐death grief scale—Marwit–Meuser Caregiver Grief Inventory (MM‐CGI).MethodsSeventy‐two dementia family caregivers were recruited from a tertiary hospital. Existence of pre‐death grief was shown by its measurability on MM‐CGI, together with good internal consistency reliability and construct validity. Characteristics of pre‐death grief were explored through multivariate linear regression of MM‐CGI and by comparing MM‐CGI scores with those from the original US study using one‐sample T‐test.ResultsIn the Asian context, pre‐death grief was measurable in a reliable and valid manner. Risk factors of pre‐death grief included caring for patients with severe dementia, spousal relationship and secondary or below education. Influence of culture was palpable—Asians had more worries and felt isolation, and certain ethnicity showed more pre‐death grief.ConclusionsPre‐death grief is applicable even to the non‐Caucasian population. It bears much similarity to that in Caucasians. Yet, its expression is modified by culture. Clinicians working with non‐Caucasian populations need to be sensitive to its presence and to the influence of culture on its expression. © 2015 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons, Ltd.

Family caregiver grief and depression outcomes from the ENABLE III randomized controlled trial.

48 Background: Little is known whether early palliative care (PC) support for family caregivers (FCGs) impacts grief and depression after care recipients die. We conducted a randomized controlled trial (RCT) of a nurse-led, phone-based concurrent PC intervention for FCGs delivered at the time of care recipients’ advanced cancer diagnosis (early group) or 12 weeks later (delayed group). We hypothesized that grief and depression scores would be lower for early compared to delayed group FCGs. Methods: Early vs. delayed RCT (10/2010-9/2013) of 123 FCGs of community dwelling persons with advanced cancer in a rural, New Hampshire NCI-designated comprehensive cancer center and affiliated outreach clinics and a Vermont VA medical center receiving a multicomponent intervention (ENABLE [Educate, Nurture, Advise, Before Life Ends]) consisting of 3 weekly sessions, monthly follow-up, and a bereavement call. FCGs of persons dying during the study period completed the Center for Epidemiological Study-Depression scale (CESD) and the Prigerson Inventory of Complicated Grief-Short Form (PG13) 8-12 weeks after care recipients’ deaths. Generalized estimating equations were used to compute group means, standard deviations, and between-group effect size differences. Results: For care recipients who died (n = 70), 44 FCGs (early: n = 19; delayed: n = 25) completed after-death questionnaires. Mean depression scores (CESD) for the early group was 14.6 (SD = 10.7) and for the delayed group was 17.6 (SD = 11.8). Mean grief scores (PG13) for the early group was 22.7 (SD = 4.9) and for the delayed group was 24.9 (SD = 6.9). Between-group effect size differences were not statistically significant (CESD: d = -.27, p = .38; PG13: d = -.36, p = .24). Conclusions: Though statistically insignificant, the magnitude of the observed between-group differences for depression was small and for grief was medium. Considering the small sample size and the delayed group’s mean depression score surpassing the clinical cutoff (CESD score > 16), the clinical relevance of these findings cannot be ruled out. Future upstream FCG PC interventions initiated long before end of life should continue to examine intervention effects on FCG after-death outcomes. Clinical trial information: NCT01245621.

Sudden-On-Chronic Death and Complicated Grief in Bereaved Dementia Caregivers: Two Case Studies of Complicated Grief Group Therapy

Caring for a person with Alzheimer's disease is challenging and often has negative health and mental health effects that, for 7–20% of caregivers, persist into bereavement in the form of complicated grief. Complicated grief is a state of prolonged and ineffective mourning. An under-recognized phenomenon in dementia care and bereavement is “sudden-on-chronic death.” In these situations, the caregiver is preparing for a gradual dying process from dementia, but the care recipient dies instead from a sudden death. In this study, an application of complicated grief group therapy for bereaved dementia caregivers with complicated grief is presented, and the effect of therapy with two bereaved caregivers who experienced the sudden death of their spouses who had a diagnosis of dementia is described. The unique treatment elements of complicated grief group therapy facilitated resolution of the ‘trauma-like” features of bereavement and progression to a healthy grief process.

Longitudinal changes and predictors of prolonged grief for bereaved family caregivers over the first 2 years after the terminally ill cancer patient’s death

Background: A significant minority of bereaved caregivers experience prolonged grief. However, few longitudinal studies have examined prolonged grief, especially in an Asian context. Aim: We explored longitudinal changes and factors predicting prolonged grief in bereaved caregivers of terminally ill Taiwanese cancer patients. Design: Observational, prospective, and longitudinal. Prolonged grief symptoms were measured with the PG-13 at 6, 13, 18, and 24 months postloss. Setting/participants: A convenience sample of 493 caregivers (83.3% participation rate) of terminally ill cancer patients was recruited from a medical center in Taiwan. Results: The prevalence of prolonged grief decreased significantly over time from the patient’s death (7.73%, 1.80%, 2.49%, and 1.85% at 6, 13, 18, and 24 months postloss, respectively, p < 0.05 at all times in reference to 6 months postloss). Caregivers’ likelihood of prolonged grief was significantly higher if they had severe preloss depressive symptoms, negatively perceived their relative’s dying situation, and were poorly prepared for the patient’s death. However, the likelihood of prolonged grief decreased significantly with greater perceived concurrent social support and subjective caregiving burden right before the patient’s death. Conclusion: Prolonged grief in bereavement diminished over time and was predicted by modifiable factors before, during, and after bereavement. To facilitate bereavement adjustment and avoid prolonged grief, healthcare professionals should develop and provide at-risk caregivers with effective interventions starting when patients are still alive to improve their dying experience, to facilitate preparedness for the patient’s forthcoming death, to alleviate caregivers’ preloss depressive symptoms, and to enhance their perceived postloss social support.

Changes over time in the quality of life, prolonged grief and family strain of family caregivers of patients in vegetative state: A pilot study.

This study explored changes over time and in the internal standards of the quality of life, prolonged grief and family strain of informal caregivers of patients in vegetative state. Data obtained from 52 caregivers showed high levels of prolonged grief and family strain, and low quality of life. A decrease of caregivers' quality of life and an increase of family strain were found by adopting a response shift procedure. Only prolonged grief did not change during time. Clinical intervention with the caregivers of vegetative state patients should be differentiated on the basis of the duration of the caring experience.

What causes grief in dementia caregivers?

Alzheimer's disease (AD) is the most prevalent neurodegenerative disease in the world. Most AD patients become dependent on their relatives, i.e. family caregivers. Providing care to a person with AD influences caregiver's life and leads to feelings of grief, which often precede caregiver depression. The purpose of the article was to evaluate the Meuser and Marwit Caregiver Grief Inventory (MM-CGI-50) for use in Polish family caregivers and to find out determinants of grief of family caregivers of AD individuals living in Poland. A sample of 151 spouse and adult child caregivers of community-dwelling AD patients (95 females and 56 males) was interviewed to determine the influence of such factors as caregiver's age, gender, family relation to the care recipient (CR) and caregiving-related changes in caregiver's working time, leisure time and material status to find out the impact of caregiving role on intensity of caregiver grief. Caregiver grief was measured by means of MM-CGI-50. Additionally, carers were administered a questionnaire including patient's and caregiver's demographics. Also, CR's dementia assessment was informant-based and determined with investigator-administered clinical dementia rating (CDR) scale. Of all analyzed factors, only caregiver's informant dementia rating significantly influenced caregiver grief. To conclude, the effect of caregiver's age, gender, family relation to the CR and caregiving-related changes in caregiver's working time; leisure time and material status could not be found. To add, MM-CGI-50 can be effectively used to assess grief in Polish family caregivers of AD patients.

Pre‐death grief in the context of dementia caregiving: a concept analysis

The aim of this study was to report on an analysis of the concept of pre-death grief in the context of dementia family caregiving. Research indicates that witnessing changes and losses in a family member with dementia can lead to pre-death grief. Pre-death grief is associated with depression, burden and maladaptive caregiver coping. However, the concept lacks a refined definition and blurs with similar constructs. Concept analysis using a hybrid of Penrod and Hupcey's principle-based concept analysis and Chin and Kramer's conceptualization of meaning. 49 peer-reviewed papers (2000-2013) that addressed pre-death grief in dementia family caregivers were used for the principle-based analysis; two examples from the popular media were used for the analysis of conceptual meaning. The scientific papers were examined for epistemological, linguistic, pragmatic and logical clarity. The two examples from the popular media were explored for conceptual meaning. Pre-death grief in the context of dementia caregiving is a meaningful concept found in the popular media. From a scholarly point of view, it is an emerging concept. A definition is offered to advance conceptual clarity. Discussion focuses on advancing the concept into a situation-specific middle-range theory of pre-death grief in family caregiving. The concept of pre-death grief has salience for researchers and caregivers. This analysis lays the foundation for use of the concept in nursing research and practice across cultural, environmental and illness domains.

Benefits and Costs of Home Palliative Care Compared With Usual Care for Patients With Advanced Illness and Their Family Caregivers

Are home palliative care services associated with benefits to patients with advanced illness and family caregivers, and are they cost-effective? Compared with usual care, home palliative care is associated with increased odds of dying at home and fewer symptoms for patients with advanced illness. It is not associated with changes in caregiver grief. Cost-effectiveness is inconclusive.

Effects of Satisfaction with Social Support on Complicated Grief in Bereaved Dementia Caregivers

Background: While complicated grief can lead to adverse health outcomes, social support has been shown to be an important protective factor of its negative effects. The present study investigated the relationship between social support including satisfaction with support, received support, and negative interactions and complicated grief in the transitional context from caregiving to bereavement. Methods: Bereaved caregivers (n=221) who participated in a multi-site study of dementia caregiving were assessed for complicated grief. Social support measured before and after death were used to examine the longitudinal associations among social support and complicated grief. Results: We found that caregivers reporting greater increase in satisfaction with social support were likely to experience lower levels of complicated grief, while the amount of received social support did not significantly impact complicated grief. Negative social interaction was significantly associated with the level of complicated grief after the death of the care recipient. Conclusions: The relationship between social support and complicated grief suggests that satisfaction with social support may be associated with lower levels of complicated grief. Study findings point to the importance of the type of social support for reducing the level of complicated grief.

Pre-loss symptoms related to risk of complicated grief in caregivers of terminally ill cancer patients

PurposeA number of studies have underlined a 10–20% prevalence of complicated grief (CG) among caregivers of cancer patients. The study aimed at examining the relationship between pre-loss criteria for CG and post-loss diagnosis of CG and at evaluating the validity and factor structure of a predictive tool, the Inventory of Complicated Grief (ICG), in order to identify the risk of developing CG in a sample of Italian caregivers. MethodsSixty family members of terminally ill patients admitted to hospice and receiving a Palliative Prognostic Score (PaP) predictive 30 day survival time <30% completed the Pre-Death ICG (ICG-PL) (T0). Family members were met again 6 months after the death of their loved one (T1) and submitted to the interview for Complicated Grief (Post-loss interview-PLI). ResultsCaseness for CG was shown in 18.3% of caregivers at T1. ICG-PL score (T0) were higher among those who developed CG at T1 than non-cases. A cut off score ≥49 on the ICG-PL (AUC=0.98) maximized sensitivity (92%) and specificity (98%) on caseness at T1. Pre-loss criteria related to traumatic distress, separation distress and emotional symptoms in general were significantly related to a post-loss diagnosis of CG, while no effect was shown on duration of pre-loss distress. ConclusionsThe use of short screening tools, like the ICG-PL, may help health care professionals to identify subjects at risk for CG.

Predictors of Grief in Bereaved Family Caregivers of Person's With Alzheimer's Disease: A Prospective Study

The purpose of this prospective study was to identify factors in 66 spouses and adult child caregivers of person's with Alzheimer's disease prior to the death that predicted higher levels of grief in bereavement. A hierarchical regression model was tested. Predeath grief, dysfunctional coping, depression, social support, and decreased positive states of mind explained 54.7% of the variance in postdeath grief. Factors that contributed significantly to postdeath grief included predeath grief and depression. Results from this study indicate that risk factors for postdeath grief can be predicted prior to the death.

Content and Face Validity of the Marwit-Meuser Caregiver Grief Inventory (Short Form) in African American Caregivers

There may be cultural differences in the experience of predeath grief in African American (AA)/Black caregivers for persons with Alzheimers disease (AD). The most commonly used screening tool, the Marwit and Meuser Caregiver Grief Inventory—Short Form (MMCGI-SF), was developed from focus groups with primarily Caucasian/White caregivers. Interviews were held with 19 AA spouse and adult child caregivers for persons with mild, moderate, and severe AD, and data were coded and compared with scale items on the MCMGI-SF to assess validity. Results from this study provide evidence for content and face validity of the MMCGI-SF for use in AA caregivers.

The Impact of Depression on the Expression of Caregiver Burden and Grief

This study examined the impact of self-reported doctor's depression diagnosis on burden and grief expression in dementia caregivers (N = 80). Depression was not related to overall grief and burden levels, but influenced the item endorsement pattern on these measures. Depressed caregivers were significantly more likely to endorse items concerning loss of freedom and control in their lives. Furthermore, caregivers with a depression diagnosis scored significantly higher on a personal sacrifice and burden subscale, compared to caregivers who had never received a diagnosis. There was no difference on subscales measuring heartfelt sadness and longing or worry and felt isolation. Caregivers with past depression may not necessarily demonstrate greater grief and burden levels, but may experience these differently than caregivers without past depression.

Grief in caregivers of persons with Alzheimer’s disease and related dementia: A qualitative synthesis

This article provides a meta-synthesis of studies focusing on grief in caregivers of people with Alzheimer's disease or related dementia. Through a systematic search, 11 articles met the inclusion criteria that care receivers had a diagnosis of Alzheimer's disease or related dementia, caregivers were informal caregivers, and the study focused on caregiver grief. The meta-synthesis followed a meta-ethnography approach based on reciprocal translation. Six themes were identified, namely challenges of caregiving, losses and changes in the relationship, the role of dementia in grief, striving despite dementia, utilising social support and death as a relief from caregiving. Themes are discussed within an integrated framework showing the connected relationships between themes. The devised framework of themes illustrates the general experience of caregiver grief and can be used to devise specific, targeted interventions to help caregivers to identify and work through their grief.

Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers.

BackgroundExtensive evidence shows that well over 50% of people prefer to be cared for and to die at home provided circumstances allow choice. Despite best efforts and policies, one‐third or less of all deaths take place at home in many countries of the world.Objectives1. To quantify the effect of home palliative care services for adult patients with advanced illness and their family caregivers on patients' odds of dying at home; 2. to examine the clinical effectiveness of home palliative care services on other outcomes for patients and their caregivers such as symptom control, quality of life, caregiver distress and satisfaction with care; 3. to compare the resource use and costs associated with these services; 4. to critically appraise and summarise the current evidence on cost‐effectiveness.Search methodsWe searched 12 electronic databases up to November 2012. We checked the reference lists of all included studies, 49 relevant systematic reviews, four key textbooks and recent conference abstracts. We contacted 17 experts and researchers for unpublished data.Selection criteriaWe included randomised controlled trials (RCTs), controlled clinical trials (CCTs), controlled before and after studies (CBAs) and interrupted time series (ITSs) evaluating the impact of home palliative care services on outcomes for adults with advanced illness or their family caregivers, or both.Data collection and analysisOne review author assessed the identified titles and abstracts. Two independent reviewers performed assessment of all potentially relevant studies, data extraction and assessment of methodological quality. We carried out meta‐analysis where appropriate and calculated numbers needed to treat to benefit (NNTBs) for the primary outcome (death at home).Main resultsWe identified 23 studies (16 RCTs, 6 of high quality), including 37,561 participants and 4042 family caregivers, largely with advanced cancer but also congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), HIV/AIDS and multiple sclerosis (MS), among other conditions. Meta‐analysis showed increased odds of dying at home (odds ratio (OR) 2.21, 95% CI 1.31 to 3.71; Z = 2.98, P value = 0.003; Chi2 = 20.57, degrees of freedom (df) = 6, P value = 0.002; I2 = 71%; NNTB 5, 95% CI 3 to 14 (seven trials with 1222 participants, three of high quality)). In addition, narrative synthesis showed evidence of small but statistically significant beneficial effects of home palliative care services compared to usual care on reducing symptom burden for patients (three trials, two of high quality, and one CBA with 2107 participants) and of no effect on caregiver grief (three RCTs, two of high quality, and one CBA with 2113 caregivers). Evidence on cost‐effectiveness (six studies) is inconclusive.Authors' conclusionsThe results provide clear and reliable evidence that home palliative care increases the chance of dying at home and reduces symptom burden in particular for patients with cancer, without impacting on caregiver grief. This justifies providing home palliative care for patients who wish to die at home. More work is needed to study cost‐effectiveness especially for people with non‐malignant conditions, assessing place of death and appropriate outcomes that are sensitive to change and valid in these populations, and to compare different models of home palliative care, in powered studies.

Quality of life and anticipatory grieving among parents living with a child with cerebral palsy

The purpose of this study was to describe the quality of life and anticipatory grieving among Jordanian parents living with a child with cerebral palsy. A cross-sectional, descriptive, correlational design was used with 204 Jordanian parents. Both mothers and fathers were recruited from health-care centres that provided comprehensive care for children with cerebral palsy in Jordan and from schools for special education. Structured interviews were conducted using the Marwit and Meuser Caregiver Grief Inventory Cerebral Palsy and Quality of Life Index. The majority of the parents reported that providing care for a child with cerebral palsy is requiring more emotional energy and determination than ever expected. There was a significant negative correlation between total anticipatory grief score and total quality of life score and all subscales. This indicates that parents with high level of intensity of anticipatory grief had lower quality of life. No statistically significant differences were found in anticipatory grief and quality of life responses between mothers and fathers. The outcomes of this study have important implications for encouraging family-centred care and inform policy to improve the lives of children with cerebral palsy and their parents.