Effects of family-based dignity intervention and expressive writing on anticipatory grief of family caregivers of patients with cancer: a study protocol for a four-arm randomized controlled trial and a qualitative process evaluation
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SUBMITTER: Seyedfatemi N
PROVIDER: S-EPMC8552199 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Individuals with Parkinson's disease (PD) and their caregivers are at risk for emotional distress and hypercortisolism. Expressive writing is an effective complementary intervention to ameliorate the psychological and physiological effects of chronic illness. This pilot study aimed to evaluate feasibility and preliminary effectiveness of an expressive writing intervention for individuals with PD and their caregivers.Individuals with PD (N?=?27) and their caregivers (N?=?14) were randomly assigned to expressive (N?=?15 patients, eight caregivers) or neutral (N?=?12 patients, six caregivers) writing conditions. Cortisol awakening response (CAR), non-motor functioning, quality of life, and performance on tests of cognitive functioning were assessed at baseline, immediate post, 4-month, and 10-month post intervention.Attrition was a challenge as eight patients (29.62 %) and four caregivers (28.57 %) chose to discontinue before beginning the intervention or were lost to follow up prior to completing the intervention or the first follow up visit. Significant reduction in anxiety, marginally significant improvement in depression and caregiver burden, and significant improvements in performance on tests of learning and memory were observed, but these changes did not differ by writing condition. CAR significantly differed over time between patients and caregivers and writing conditions.Some evidence for the feasibility and effectiveness of writing to alleviate hypercortisolism was demonstrated in a small sample of PD patients; however, relatively high attrition rates and the lack of difference between expressive and neutral writing conditions on emotional and neurocognitive outcomes suggests expressive writing procedure modifications may be needed to obtain optimal results for this population.ClinicalTrials.gov, NCT02217735 , Study Start Date: August 30, 2011.
| S-EPMC4666161 | biostudies-literature
Project description:Objective To explore the interrelationship between post-traumatic stress symptoms (PTSS), illness uncertainty (IU), and anticipatory grief (AG). Methods Structural equation modeling with bootstrapping estimation was conducted using data from a convenience sample of 254 family caregivers of patients with advanced lung cancer in China. Participants were recruited from a public cancer hospital in Shenyang, China. The family caregivers completed the Impact of Events Scale-Revised, Uncertainty in Illness Scale Family Caregiver Version, and Anticipatory Grief Scale. Results The measurement model has good reliability and validity, and the final model fit the data well. PTSS positively influenced AG (direct effect estimate = 0.391, p = 0.002). Moreover, IU was found to mediate the relationship between PTSS and AG (Indirect effects estimate = 0.168, p = 0.005). The mediating effect of IU accounted for up to 30.1% of the total effect. Conclusion IU mediated the relationship between PTSS and AG. Healthcare professionals should continuously assess PTSS, IU and AG levels in FCs and provide effective intervention options for mitigation.
| S-EPMC9218190 | biostudies-literature
Project description:Background: Family dementia caregivers often suffer from an immense toll of grief while caring for their loved ones. We sought to identify the clinical relationship between grief, depression and mindfulness and identify neural predictors of symptomatology and improvement. Methods: Twenty three family dementia caregivers were assessed at baseline for grief, mindfulness and depression, of which 17 underwent functional magnetic resonance imaging (fMRI). During fMRI, caregivers were shown faces of either their dementia-stricken relative or that of a stranger, paired with grief-related or neutral words. In nine subjects, post fMRI scans were also obtained after 4 weeks of either guided imagery or relaxation. Robust regression was used to predict changes in symptoms with longitudinal brain activation (BA) changes as the dependent variable. Results: Grief and depression symptoms were correlated (r = 0.50, p = 0.01), and both were negatively correlated with mindfulness (r = -0.70, p = 0.0002; r = -0.52, p = 0.01). Relative to viewing strangers, caregivers showed pictures of their loved ones (picture factor) exhibited increased activation in the dorsal anterior cingulate gyrus and precuneus. Improvement in grief but not mindfulness or depression was predicted by increased relative BA in the precuneus and anterior cingulate (different subregions from baseline). Viewing grief-related vs. neutral words elicited activity in the medial prefrontal cortex and precuneus. Conclusions: Caregiver grief, depression and mindfulness are interrelated but have at least partially nonoverlapping neural mechanisms. Picture and word stimuli related to caregiver grief evoked brain activity in regions previously identified with bereavement grief. These activation foci might be useful as biomarkers of treatment response.
| S-EPMC6530345 | biostudies-literature
Project description:Dementia caregivers do not relinquish their role after placing family members in long-term care and they experience increased chronic grief. The Chronic Grief Management Intervention (CGMI) is a12-week group-based program that uses guided discussion to deliver knowledge of Alzheimer's or a related dementia and teach skills in communication, conflict resolution, and chronic grief management in dementia caregivers who placed their family members in long-term care. Using a quasi-experimental design, 83 caregivers from 15 long-term care facilities received either the CGMI (n = 34) or a comparison condition consisting of two check-in calls (n = 49). In this pilot study, we examined the feasibility of implementing the CGMI and evaluated the effects of the intervention on caregivers' knowledge and skill and their chronic grief and depression. The intervention was feasible and resulted in significant improvement in caregivers' heartfelt sadness and longing at 3 months and a significant drop in their guilt at the 6-month follow-up.
| S-EPMC5546622 | biostudies-other
Project description:BackgroundIn palliative care, caring for spouses suffering from incurable diseases can provoke a range of reactions in informal caregivers that are part of the grieving process, as well as other reactions and ways of coping with a current role, which is often challenging. Anticipatory grief occurs before death and is often present in people who face the eventual loss of a loved one or their own death. This study aimed to gain insight into the anticipatory grief of informal caregivers who are providing at-home palliative care for their ill spouse. Our research questions focus on investigating the meanings caregivers ascribe to the experience of providing palliative care and the impending loss of a spouse.MethodsA qualitative study was conducted in Zagreb, Croatia, from April to June of 2021. Eight participants took part in the study. Participants in the study were informal caregivers of a spouse suffering from an incurable, terminal disease that receives at-home palliative care. Data were collected through semi-structured face-to-face interviews. Transcripts were analyzed by interpretive phenomenological analysis.ResultsThe analysis provided several meanings that represent caregivers' experiences and coping strategies. The caregivers bravely face the challenges of "living with an illness" by maintaining optimism, strong cohesion with their partner and a sense of joint destiny. They tend to repress their own personal needs and feelings while carrying the burden of care. Caregivers tend to stay positive and focus on living in the present by taking an active role in providing care for the ill spouse and family.ConclusionsAnticipatory grief presents emotional, cognitive, and spiritual challenges to spouse caregivers in palliative care. The contribution of this study was to gain insight into the meaning that caregivers ascribe to the experience and challenges they face while providing everyday care for their ill spouse. Confirming prior results, the experiences are generally similar to all caregivers, pointing to the need for substantial improvement in the quality of the support and help from the healthcare workers and other experts who provide palliative care and support for the patients' family members.
| S-EPMC9672539 | biostudies-literature
Project description:BackgroundAs an ethical principle, showing respect for human dignity is a professional duty of all nurses. The aggressive nature of severe burn injuries makes it hard to respect the existential values and dignity of burn patients. However, only a few studies have been conducted on the preservation of the dignity of burn patients. The purpose of this study is to identify and describe burn patients' dignity as perceived by nurses, family caregivers, and burn patients.MethodsThe present study has a descriptive, qualitative research design. Nurses, family caregivers and patients in the biggest burns hospital in the south of Iran were selected via purposeful sampling from October 2017 to August 2018 (n = 25). Data were collected using semi-structured, in-depth, individual interviews. Thereafter, data analysis was performed through conventional content analysis.ResultsThree main themes were extracted from the information obtained in the interviews: empathic communication, showing respect, and providing comprehensive support.ConclusionThe care provided to burn patients should be combined with effective communication, spending time with them, and attending to their repetitive requests, so that they can freely express their feelings and concerns. In addition, the patients' human values and beliefs should be respected and all aspects of their existence should be taken into account to preserve their dignity. Workshops designed based on the findings of the present study can help with improving the quality of burn nursing care.
| S-EPMC8539828 | biostudies-literature
Project description:Expressive writing about past negative events has been shown to lead to a slew of positive outcomes. However, little is known about why writing about something negative would have positive effects. While some have posited that telling a narrative of a past negative event or current anxiety "frees up" cognitive resources, allowing individuals to focus more on the task at hand, there is little neural evidence suggesting that expressive writing has an effect on cognitive load. Moreover, little is known about how individual differences in the content of expressive writing could affect neural processing and the cognitive benefits writing confers. In our experiment, we compared brain activity in a group that had engaged in expressive writing vs. a control group, during performance on a feedback-based paired-associate word-learning task. We found that across groups, differential activation in the dorsal striatum in response to positive vs. negative feedback significantly predicted better later memory. Moreover, writing about a past failure resulted in more activation relative to the control group during the learning task in the mid-cingulate cortex (MCC), an area of the brain crucial to processing negative emotion. While our results do not provide support for the assertion that expressive writing alters attentional processing, our findings suggest that choosing to write about particularly intense past negative experiences like a difficult past failure may have resulted in changes in neural activation during task processing.
| S-EPMC6869814 | biostudies-literature
Project description:In Alzheimer's disease, two fundamental aspects become important for caregivers: ambiguity and ambivalence. Thus, anticipatory grief is considered an active psychological process that is very different from the mere anticipation of death. The present study aims to determine which characteristics of family caregivers of people with dementia, such as age, gender, educational level, relationship with the person with dementia, years with dementia or years as a caregiver, are related to the presence of anticipatory grief. A cross-sectional design was employed. The sample consisted of a total of 129 subjects who cared for a family member with dementia. A sociodemographic data sheet and a battery of tests measure the presence of anticipatory grief, caregiver burden and/or psychopathology. The results obtained allowed us to confirm some of the hypotheses regarding the anticipatory grief construct, the importance of the care time factor, in years and per day, as well as the relevance of the previous demographic and psychopathological profile (being female, spouse function and possible depressive symptomatology). Likewise, from the prediction analyzes performed, it seems that these variables can predict anticipatory grief. These results propose interesting opportunities to formulate care proposals to professionals and family caregivers in relation to care tasks and caregiver skills.
| S-EPMC8392352 | biostudies-literature
Project description:Pre-death grief (PDG) is a key challenge faced by caregivers of persons with dementia (PWD). Marwit-Meuser Caregiver Grief Inventory (MM-CGI) and its abbreviated MM-CGI-Short-Form (MM-CGI-SF) are among the few empirically-developed scales that detect PDG. However, they have not had a Mandarin-Chinese version even though Chinese-speaking populations have among the largest number of PWD. We produced a Mandarin-Chinese version of MM-CGI and evaluated whether it had equivalent scores and similar psychometric properties to the English version.We produced the Chinese MM-CGI through the methods of forward-backward translation and cognitive debriefing. Then, we recruited family caregivers of PWD (n?=?394) to complete either the Chinese (n?=?103) or English (n?=?291) version. The two versions were compared in their score-difference (adjusting for potential confounders using multiple linear regression), internal-consistency reliability (using Cronbach's ?) and test-retest reliability (using intraclass correlation-coefficient), known-group validity (based on the relationship with the PWD and stage of dementia) and construct validity (using Spearman's correlation-coefficient).The two versions showed similar mean scores, with the adjusted score-difference of 1.2 (90% CI -5.6 to 7.9) for MM-CGI and?-?0.4 (90% CI -2.9 to 2.1) for MM-CGI-SF. The 90% CI for adjusted score-difference fell within predefined equivalence-margin (±8 for MM-CGI and?±?3 for MM-CGI-SF) and indicated equivalence of the scores. The two versions also demonstrated similar characteristics in reliability and validity.The Chinese MM-CGI opens the way for PDG assessment and intervention among Chinese-speaking caregivers. Establishing its measurement equivalence with the English version paves the way for cross-cultural research on PDG in dementia caregiving.
| S-EPMC5948857 | biostudies-other
Project description:Coping with predeath grief (PDG) is an unmet need in caregivers of persons with dementia (PWD). The Marwit-Meuser Caregiver Grief Inventory (MM-CGI) and its abbreviated MM-CGI-Short-Form (MM-CGI-SF) are among the few empirically developed scales that detect PDG, yet they have not been substantially validated outside United States. We evaluated the reliability and validity of the PDG scales in a multiethnic Asian population distinct from that of United States.Family caregivers of community-dwelling PWD (n = 300) completed self-administered questionnaires containing MM-CGI and other scales of related construct. Sixty percent of the participants repeated the questionnaires 1 week later for test-retest reliability. Internal-consistency reliability was assessed by Cronbach's ?, test-retest reliability by intraclass-correlation-coefficient, construct validity by Spearman's correlation-coefficient, and factorial validity by confirmatory factor analysis (CFA). Cohen's ? was used to compare the agreement between MM-CGI and a commonly-used caregiver burden scale (Zarit Burden Interview).MM-CGI and MM-CGI-SF demonstrated internal-consistency reliability, test-retest reliability, construct validity, and known-group validity. In CFA, MM-CGI showed modest model-fit (comparative-fit-index, CFI = .80; Tucker-Lewis-index, TLI = .79), whereas MM-CGI-SF showed better model-fit (CFI = .91; TLI = .90). Eighty-six percent of the caregivers reported average or high levels of PDG, with 18% reporting high PDG. High scores in the caregiver burden scale only showed modest agreement with high scores in MM-CGI (? = .47).MM-CGI and MM-CGI-SF demonstrated adequate psychometric properties and utility, beyond that of a caregiver burden scale, in detecting high PDG in a multiethnic Asian population. They open the way for PDG intervention in clinical care, as well as further exploration in caregiver research.
| S-EPMC5946851 | biostudies-other