The chain mediating effect of spiritual well-being and anticipatory grief between benefit finding and meaning in life of patients with advanced lung cancer: Empirical research quantitative.

AIM: This study aimed to explore the chain mediating effect of spiritual well-being and anticipatory grief between benefit finding and meaning in life of patients with advanced lung cancer. DESIGN: This was a cross-sectional study. METHODS: The research included 400 patients with advanced lung cancer who attended REDACTE from December 2022 to August 2023 as the research subjects. Data were collected using a questionnaire including socio-demographic and clinical characteristics, the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being scale (FACIT-Sp-12), the Benefit Finding Scale (BFS), the Preparatory Grief in Advanced Cancer Patients Scale (PGAC), and the Meaning of Life Questionnaire (MLQ). The structural equation model (SEM) was used to analyse the relationship between benefit finding, spiritual well-being, anticipatory grief and meaning in life. RESULTS: There was a significant correlation between benefit finding, spiritual well-being, anticipatory grief, and meaning in life. Benefit finding could have a direct positive impact on meaning in life of patients with advanced lung cancer, but it could also indirectly affect meaning in life of patients with advanced lung cancer through three pathways: the mediating effect of spiritual well-being, the mediating effect of anticipatory grief and the chain mediating effect of spiritual well-being and anticipatory grief. Nursing staff should develop an integrated program of interventions to enhance the meaning in life of patients with advanced lung cancer.

Factors affecting anticipatory grief of family carers supporting people living with Motor Neurone disease: the impact of disease symptomatology.

OBJECTIVE: To investigate the effect of carer- and disease-related factors on anticipatory grief (AG) in family carers supporting people living with Motor Neurone Disease. METHODS: Seventy-five carers from the UK and USA participated in this cross-sectional study, between July 2021 and February 2023. Participants completed assessments on: anticipatory grief (MMCGI-SF, comprising three sub-scales: Personal Sacrifice Burden, Heartfelt Sadness and Longing, Worry and Felt Isolation); person with MND (pwMND) behavioral changes (MiND-B) and disease severity (ALSFRS-R); carer-pwMND emotional bond (Relationship Closeness Scale), familism levels (Familism Scale), and reported hours of care provided. Multiple linear regression analyses were conducted to explore factors impacting carer AG. RESULTS: AG total scores showed that 50.7% of carers were experiencing common grieving reactions, 22.6% presented intense grieving emotions, and 26.7% presented low grieving responses.Disease severity (regression coefficient, ß = -0.31, p = 0.01, 95%CI -0.91 to -0.13) and behavioral changes (ß = -0.34, p = 0.002, 95%CI -1.45 to -0.33) predicted AG total scores (proportion of explained variation, R2=0.38, p < 0.001).Regarding AG subscales, Personal Sacrifice Burden (R2=0.43, p < 0.001) was predicted by disease severity (ß = -0.39, p < 0.001, 95%CI -0.42 to -0.11). Behavioral changes predicted Heartfelt Sadness and Longing (ß = -0.27, p = 0.03, 95%CI -0.49 to -0.03; R2 = 0.21, p = 0.01) and Worry and Felt Isolation (ß = -0.42, p < 0.001, 95%CI -0.63 to -0.20; R2=0.33, p < 0.001). CONCLUSION: This study suggests that disease-related factors may be the strongest predictors of carer AG. Interventions addressing carers' understanding and management of MND symptoms seem crucial to support their experiences of loss and their acceptance of MND. Evidence-based support for carers in MND services is required.

Validity and Reliability Study of the Prolonged Grief Disorder- Caregiver Turkish Form. / Uzamis Yas Bozuklugu Ölçegi-Bakim Veren Türkçe Formu'nun Geçerlik ve Güvenirlik Çalismasi.

OBJECTIVE: The aim of this study was to adapt the Prolonged Grief Disorder - Caregiver Form (PG-12), which is used to measure grief symptoms of caregivers providing care to their relatives with a chronic diseases that cause functional disability to Turkish and to investigate its psychometric properties. We also aimed to investigate the prevalence of prolonged grief disorder in the caregiver sample. METHOD: The sample consisted of 120 adult participants (70.8% female) who acted as caregivers. The participants were administered Prolonged Grief Disorder-Caregiver Form, Zarit Caregiver Burden Scale, Beck Depression Inventory and Life Satisfaction Scale. RESULTS: The results of confirmatory factor analysis showed that the single-factor structure of PG-12, consistent with the original form, was supported. PG-12 scores showed a positive correlation with depression and caregiver burden scores and a negative correlation with life satisfaction scores. The internal consistency coefficient of the scale was 0.85. The prevalence of prolonged grief disorder calculated using PG-12 was found to be 31.66%. CONCLUSION: The results showed that PG-12 is a valid and reliable tool for assessing the grief symptoms of people who provides care for a relative. In addition, the prevalence of prolonged grief disorder in our study population was high. Additional studies are needed in Turkey to confirm this rate and develop new strategies for caregivers.

Caregivers' Burden and Anticipatory Grief Increases Acute Health Care Use in Older Adults with Severe Dementia.

OBJECTIVES: To assess the bidirectional association of caregivers' burden and anticipatory grief with acute health care use (inpatient or emergency admission) among older adults with severe dementia. DESIGN: Prospective cohort. SETTING AND PARTICIPANTS: A total of 215 family caregivers of older adults with severe dementia in Singapore were surveyed every 4 months for 3 years (up to 10 surveys). We measured caregiver burden using the Caregiver Reaction Assessment scale and anticipatory grief using the Marwit Meuser Caregiver Grief Inventory-Short Form. METHODS: Using separate multivariable mixed-effects logistic regressions, controlling for relevant confounders, we assessed the association of caregiver burden and anticipatory grief (independent variables measured at time t) with older adults' acute health care use in the next 4 months (outcome measured at time t + 1). We also performed separate multivariable mixed-effects linear regressions to assess the association of older adults' acute health care use in the past 4 months (independent variable measured at time t) with caregiver burden and anticipatory grief (outcomes measured at time t). RESULTS: At baseline, 33% of the older adults had an inpatient or emergency admission in the past 4 months. Regression results showed that higher caregiver burden [odds ratio (OR), 1.58; 95% CI, 1.15-2.16] and anticipatory grief (OR, 1.02; 95% CI, 1.00-1.04) significantly increased the likelihood of older adults experiencing acute health care use in the next 4 months. However, older adults' acute health care use in the past 4 months did not significantly change their caregivers' burden or anticipatory grief. CONCLUSIONS AND IMPLICATIONS: Higher caregiver burden and anticipatory grief increase the likelihood of older adults having acute health care use. Addressing caregivers' well-being has implications for reducing acute health care use in older adults and the economic burden of severe dementia.

Top Ten Tips Palliative Care Clinicians Should Know About Dignity-Conserving Practice.

The acknowledgment and promotion of dignity is commonly viewed as the cornerstone of person-centered care. Although the preservation of dignity is often highlighted as a key tenet of palliative care provision, the concept of dignity and its implications for practice remain nebulous to many clinicians. Dignity in care encompasses a series of theories describing different forms of dignity, the factors that impact them, and strategies to encourage dignity-conserving care. Different modalities and validated instruments of dignity in care have been shown to lessen existential distress at the end of life and promote patient-clinician understanding. It is essential that palliative care clinicians be aware of the impacts of dignity-related distress, how it manifests, and common solutions that can easily be adapted, applied, and integrated into practice settings. Dignity-based constructs can be learned as a component of postgraduate or continuing education. Implemented as a routine component of palliative care, they can provide a means of enhancing patient-clinician relationships, reducing bias, and reinforcing patient agency across the span of serious illness. Palliative care clinicians-often engaging patients, families, and communities in times of serious illness and end of life-wield significant influence on whether dignity is intentionally integrated into the experience of health care delivery. Thus, dignity can be a tangible, actionable, and measurable palliative care goal and outcome. This article, written by a team of palliative care specialists and dignity researchers, offers 10 tips to facilitate the implementation of dignity-centered care in serious illness.

Relationship between self-disclosure and anticipatory grief in patients with advanced lung cancer: the mediation role of illness uncertainty.

Objective: To study the relationship between self-disclosure, illness uncertainty (IU) and anticipatory grief (AG) in patients with advanced lung cancer. Methods: This is a cross-sectional study using convenience sampling method, in which 316 patients with advanced lung cancer who were hospitalized in a tertiary hospital in Wuxi City, China, from November 2022 to April 2023 were sampled. The Preparatory Grief in Advanced Cancer Patients, Mishel Uncertainty in Illness Scale, and the Distress Disclosure Index Scale (DDI) were selected to analyse the status quo, correlations, and the mediating effect of illness uncertainty on the relationship between self-disclosure and anticipatory grief in advanced lung cancer patients. Results: The total self-disclosure score of advanced lung cancer patients was (36.35 ± 9.25), the total score of IU was (56.92 ± 15.65), and the score of AG was (52.29 ± 9.08); the results of correlation analyses showed that IU was negatively correlated with self-disclosure in advanced lung cancer patients (p < 0.05) and positively correlated with AG (p < 0.05), and self-disclosure was negatively correlated with AG (p < 0.05);the mediating effect rate of IU between self-disclosure and AG in advanced lung cancer patients was 49%. Conclusion: The AG of advanced lung cancer patients was at a medium-high level, and IU had a significant mediating effect between self-disclosure and AG of advanced lung cancer patients; by increasing the level of patients' self-disclosure, IU could be effectively alleviated, and ultimately the AG of the patients could be reduced.

Burden and anticipatory grief in caregivers of family members with Alzheimer's disease and other dementias.

OBJECTIVES: This study aimed to analyze the different factors that intervene in the task of caring for relatives of people with Alzheimer's and other dementias. A first objective focused on assessing the relation between burden and anticipatory grief, considering the possibility of social support and the risk of psychopathology. A second objective aimed to examine whether caregiver burden modulates the relationships between anticipatory grief and psychopathology. A cross-sectional design was employed. METHODS: The sample consists of 129 participants who care for a family member with Alzheimer's and other dementias. A protocol based on a battery of tests has been applied and a mediation analysis was carried out. RESULTS: The results show a positive relationship between burden and anticipatory grief. Social support could have an indirect relationship with anticipatory grief, based on its effect on the level of psychopathology and caregiver burden. Finally, a modulation model reflects that the relationship between anticipatory grief and psychopathology is strong, the latter having a greater effect as a result variable than as a risk variable. However, it seems that the relationship between grief and psychopathology is better explained directly than not through the modulating effect of the caregiver burden. SIGNIFICANCE OF RESULTS: The results obtained encourage us to think that an approach focused on intervening in the anticipatory grief may be an opportunity to reduce or buffer other caregiving outcomes, especially those related to the perception of caregiver burden and psychopathology.

Caregivers' End-of-Life Care Goals for Persons with Severe Dementia Change Over Time.

BACKGROUND: Family caregivers make end-of-life (EOL) decisions for persons with severe dementia (PWSDs). It is not known whether the family caregivers' goals change over time. OBJECTIVE: Assess caregivers' EOL care goal for PWSDs and change in these goals over time. METHODS: Using a prospective cohort of 215 caregivers of PWSDs, we assessed the proportion of caregivers whose EOL care goal for PWSDs changed between two consecutive time points. Mixed effects multinomial regression models assessed factors associated with caregivers' EOL care goals for PWSD (maximal, moderate, minimal life extension); and change in EOL care goal from previous time point. RESULTS: At baseline, 20% of the caregivers had a goal of maximal life extension for their PWSD, and 59% changed their EOL care goal at least once over a period of 16 months. Caregivers of PWSDs with lower quality of life (RR: 1.15, CI: 1.06, 1.24), who expected shorter life expectancy for PWSDs (RR: 10.34, CI: 2.14, 49.99) and who had an advance care planning discussion (RR: 3.52, CI: 1.11, 11.18) were more likely to have a goal of minimal life extension for PWSD. Caregivers with higher anticipatory grief (RR: 0.96, CI: 0.93,1) were more likely to have a goal of maximal life extension. Change in PWSDs' quality of life and change in caregivers' anticipatory grief were associated with change in caregivers' EOL care goals. CONCLUSION: Caregivers' EOL care goals for PWSDs change over time with change in PWSD and caregiver related factors. Findings have implications regarding how health care providers can engage with caregivers.

[Anticipatory grief in family caregivers of persons with dementia. Psychosocial correlates and impact on caregiver's health: A literature review]. / Duelo anticipado en familiares de personas con demencia. Variables psicosociales asociadas y su impacto sobre la salud del cuidador. Una revisión de literatura.

INTRODUCTION: Taking care of a relative with dementia may be linked to negative consequences for the caregiver. One of the processes that can be experienced is anticipatory grief, that is defined as the feelings of pain and loss that appear in the caregiver before the death of the person cared for. OBJECTIVES: The review aimed to conceptualize anticipatory grief in this population, to study the related psychosocial variables, and to know the repercussions for the health of the caregiver. METHOD: A systematic search was made under the directives of PRISMA statement in the ProQuest, PubMed, Web of Science (WOS), and Scopus databases, including studies published in the last 10 years (2013-2023). RESULTS: A total of 160 articles were obtained, 15 being finally selected. It is observed that anticipatory grief is defined as an ambiguous process since it appeared before the death of the sick family member. Being a female caregiver, spouse of a family member with dementia, having a closer relationship with him and/or having an important responsibility in care, are associated with a greater chance of experiencing anticipatory grief. In relation to the person cared for, if he or she is in a severe phase of the disease, is younger, and/or presents problematic behaviours, there is also greater anticipatory grief in the family caregiver. Anticipatory grief has a significant impact on caregivers' physical, psychological, and social health, being associated with greater burden, depressive symptomatology, and social isolation. CONCLUSIONS: Anticipatory grief turns out to be a relevant concept in the context of dementia, being necessary to include it in intervention programs for this population.

Effects of family-based dignity intervention and expressive writing on anticipatory grief in family caregivers of patients with cancer: a randomized controlled trial.

Family caregivers of dying cancer patients may suffer from grief experiences and bereavement complications. Previous studies have proposed some psycho-emotional interventions for the management of these complications. However, little attention has been given to family-based dignity intervention and expressive writing. This study was conducted to examine the effects of family-based dignity intervention and expressive writing, combined and alone, on anticipatory grief in family caregivers of dying cancer patients. This was a randomized controlled trial, in which 200 family caregivers of dying cancer patients were randomly assigned to four intervention groups: family-based dignity intervention (n = 50), expressive writing intervention (n = 50), combined family-based single dignity intervention and expressive writing (n = 50), and control group (n = 50). In three times (baseline, 1 week, and 2 weeks after the interventions), anticipatory grief was assessed by a 13-item anticipatory grief scale (AGS). Finally, we found a significant reducing effect of family-based dignity intervention on AGS (-8.12 ± 1.53 vs. -1.57 ± 1.52, P = 0.01) and its subscales including behavioral (-5.92 ± 0.97 vs. -2.17 ± 0.96, P = 0.04) and emotional (-2.38 ± 0.78 vs. 0.68 ± 0.77, P = 0.03) subscales compared to the control group. However, no significant effect was seen for expressive writing intervention and combined interventions of expressive writing and family-based dignity intervention. In conclusion, family-based dignity intervention may be a safe intervention for relieving anticipatory grief among family caregivers of dying cancer patients. Additional clinical trials are needed to confirm our findings. Registration number: IRCT20210111050010N1. Trial registration date:2021-02-06.

Barriers and Facilitators of Health and Well-Being in Informal Caregivers of Dementia Patients: A Qualitative Study.

BACKGROUND: Given the dramatic projected increase in Alzheimer's disease globally and the increased risk of morbidity and mortality for family caregivers of these patients, there is an urgent need to provide more targeted, timely resources to support the health and well-being of these informal caregivers. Few studies have investigated the barriers to health and well-being and potential strategies to facilitate better self-care from the unique perspective of the caregivers themselves. PURPOSE: This qualitative study aimed to identify barriers and facilitators to health and well-being for informal caregivers of family members with Alzheimer's. METHOD: We conducted semi-structured interviews with eight informal caregivers, including daughters, wives, and one husband, ages 32 to 83. Using Reflexive Thematic Analysis, we identified three main themes and subthemes across caregivers' experiences. FINDINGS: We found that caregivers (1) prioritized mental and social well-being over physical health or health behaviors; (2) characterized the subjective burden of caregiving as a "mantle of responsibility" that could not easily be shed due to the complex subjective burden of loss, grief, guilt, resentment, isolation, loneliness, and lack of agency; (3) sought to be recognized as "additional patients", instead of being viewed as invisible patients, with support services tailored to their life stage and challenges. CONCLUSIONS: The findings suggest that the subjective burden of strain experienced by family caregivers of Alzheimer's patients has a profound impact on their health and well-being, even more so than the objective burden of strain that is the result of their day-to-day caregiving activities.

The relationship between patient-family caregiver congruence/incongruence in acceptance of illness and family caregivers' anticipatory grief.

OBJECTIVE: Cancer is a family affair that negatively impacts the lives of patients and their family caregivers. This study takes a dyadic perspective to investigate the effect of patient-family caregiver illness acceptance congruence/incongruence on family caregivers' anticipatory grief (AG) and examine whether caregivers' resilience moderates the abovementioned relationship. METHODS: For the study, 304 dyads of advanced lung cancer patients and their family caregivers from three tertiary hospitals in Jinan, Shandong Province, China were recruited. The data were analyzed using polynomial regressions and response surface analyses. RESULTS: Family caregivers' AG was lower when patient-family caregiver illness acceptance was congruent rather than incongruent. Lower patient-caregiver illness acceptance congruence was associated with higher AG in family caregivers compared with higher illness acceptance congruence. Family caregivers reported significantly higher AG only if their illness acceptance was lower than that of their patients. In addition, caregivers' resilience moderated the effects of patient-caregiver illness acceptance congruence/incongruence on family caregivers' AG. CONCLUSIONS: Patient-family caregiver illness acceptance congruence was beneficial to family caregivers' AG; resilience can be a protective factor for buffering the impact of illness acceptance incongruence on family caregivers' AG.

Development of a Scale of Nurses' Competency in Anticipatory Grief Counseling for Caregivers of Patients with Terminal Cancer.

Anticipatory grief leads to a highly stressful and conflicting experience among caregivers of patients with terminal cancer. Nurses lack the competency to assess and manage the caregivers' psychological problems, which in turn affects the caregivers' quality of life. A scale assessing the anticipatory grief counseling competency among nurses is unavailable. In this study, an Anticipatory Grief Counseling Competency Scale (AGCCS) was developed for nurses. The Scale (AGCCS) was translated into Chinese and then revised. Psychometric testing of the scale was conducted on 252 nurses who participated in the care of patients with terminal cancer at a regional teaching hospital in Southern Taiwan. The data were analyzed using descriptive statistics, reliability, and Pearson's correlation, and principal component analysis and analysis of variance were performed. Item- and scale-content validity indexes were 0.99 and 0.93, respectively. The Cronbach α of internal consistency was 0.981. The final 53-item AGCCS had five factors, which accounted for 70.81% of the total variance. The Pearson correlation coefficients of these factors ranged between 0.406 and 0.880 (p < 0.001). The AGCCS can be used to evaluate the aforementioned competency for improving caregivers' quality of care. It can also facilitate in-service education planning and evaluation.

Assessment of anticipatory grief in informal caregivers of dependants with dementia: a systematic review.

OBJECTIVES: Informal caregivers of dependants with dementia commence their bereavement experience long before the physical death of their dependant, a process referred to as "anticipatory grief". This represents an ambiguous state that has been acknowledged as a measurable variable among informal caregivers. The use of assessment tools for the identification of anticipatory grief is important for timely intervention to promote well-being and positive bereavement experiences. The aim of this systematic review is to identify and examine existing tools for assessing anticipatory grief among caregivers of dependants with dementia. METHODS: MEDLINE, EMBASE, PsychINFO, CINAHL and Web of Science were searched to July 2021. Studies focusing on the development/evaluation of instruments for measuring anticipatory grief in dementia caregivers were eligible. The quality of each measurement was graded as positive, fair, poor or no information based on defined criteria. RESULTS: 100 studies were identified. 33 papers were selected for full-text assessment and 12 papers met the eligibility criteria. Seven assessment tools were identified for measurement of pre-death grief caregivers - the Anticipatory Grief Scale (AGS), Marwit-Meuser Caregiver Grief Inventory (MM-CGI), MM-CGI-short-form (MM-CGI-SF), MM-CGI-brief (MM-CGI-BF), Prolonged Grief Scale (PG-12), Caregiver Grief Scale (CGS) and Caregiver Grief Questionnaire (CGQ). Based on content/construct validity, internal consistency and test-retest reliability the MM-CGI/MM-CGI-SF scored highest for quality followed by the CGS. CONCLUSION: Anticipatory grief in dementia has multiple facets that can be measured using self-scoring questionnaires. Our findings provide support for different measures of anticipatory grief. Further research is needed for the evaluation of the responsiveness and interpretability of these instruments.

Factors affecting nurses' willingness and competency to provide anticipatory grief counseling for family caregivers of patients with terminal cancer.

AIM AND OBJECTIVES: To explore factors associated with nurses' willingness and competency to provide anticipatory grief counselling for the family caregivers of patients with terminal cancer. BACKGROUND: Family caregivers often experience anticipatory grief due to the imminence of a loved one's death. However, few studies have identified factors associated with nurses' willingness or competency to provide anticipatory grief counselling for the family caregivers of patients with terminal cancer. METHODS: This descriptive correlational study recruited a convenience sample of nurses from cancer-related wards at a regional teaching hospital in Taiwan. The Anticipatory Grief Counseling Willingness Scale and Anticipatory Grief Counseling Competency Scale were employed. This cross-sectional study followed the STROBE checklist. RESULTS: The nurses' average scores for willingness and competency to provide anticipatory grief counselling for the family caregivers of patients with terminal cancer were 44.28 ± 8.36 and 171.84 ± 30.83, respectively. Multivariate linear regression revealed that interest in participating in anticipatory grief counselling for the family caregivers of patients with terminal cancer was significantly associated with the nurses' willingness to provide such counselling. Similarly, their willingness to provide such counselling was significantly associated with their counselling competency. CONCLUSIONS: Nurses' willingness and competency to provide anticipatory grief counselling for the family caregivers of patients with terminal cancer can be enhanced through in-service education programmes, including bedside teaching and scenario simulation. RELEVANCE TO CLINICAL PRACTICE: To improve nurses' competency in anticipatory grief counselling for the family caregivers of patients with terminal cancer, factors related to nurses' willingness to provide such grief counselling must be addressed. Diverse strategies of in-service education can be adopted to promote nurses' competency in anticipatory grief counselling.

Anticipatory Grief in Dementia: An Ethnographic Study of Loss and Connection.

In this article, I address the experiences of family members of people with dementia, as they expressed the sensation of gradually losing the person with dementia. Based on ethnographic fieldwork in nursing homes in the Netherlands, and contributing to the anthropology of grief, I explore the co-existence of experiences of anticipatory grief and manifestations of care to maintain meaningful relations. I show how my interlocutors adapted to changing circumstances as the disease progressed, and in so doing found new ways to relate, as well as prepared for future losses and the expected end of life. I argue that anticipatory grief is temporal and relational, encompassing both present and future losses, and involving a continuous negotiation between the loss and the continuing relationship. I underscore the entanglement of loss and connection, showing how both exist parallel to, and may emerge from one another, and demonstrating how an anthropological approach to anticipatory grief can reveal the nuanced and equivocal character of experiences of illness and at the end of life.

Current status and influencing factors of anticipatory grief among family caregivers of first stroke patients / 中国实用护理杂志

Objective:To investigate the current situation of expected sadness of family caregivers of first stroke patients and analyze its influencing factors, so as to provide reference for the formulation of psychological decompression intervention program for family caregivers of stroke patients.Methods:Convenience sampling method was used to conduct cross-sectional survey of 212 family caregivers of first stroke patients who were hospitalized in the First Affiliated Hospital of Shandong First Medical University from March 2020 to May 2021, using general information questionnaires and Anticipatory Grief Scale and Connor-Davidson Resilience Scale to investigate and anlalyzed its influencing factors.Results:The scare of anticipatory grief of the caregivers of first stroke patients was 87.93 ± 17.36. The results of multiple stepwise regression analysis showed that the age of family caregivers, psychological elasticity, the degree of relationship with patients, patients′ cognitive ability and self-care ability were the influencing factors of anticipatory grief of family caregivers of first stroke patients ( t values were -6.73 -11.77, P <0.05). Conclusions:The caregivers of first stroke patients have serious anticipatory grief. Staff should pay attention to the psychological conditions of the family caregivers and take effective measures to promote their physical and mental health.

O luto antecipatório e as estratégias de enfrentamento de familiares nos cuidados paliativos / Anticipatory grief and family's coping strategies in palliative care / Duelo anticipatorio y estrategias de enfrentamiento familiar en cuidados paliativos

O luto antecipatório coloca os familiares diante da necessidade de articular estratégias de enfrentamento em resposta às demandas nos Cuidados Paliativos. Este estudo, de abordagem qualitativa, teve como objetivo caracterizar as estratégias de enfrentamento de familiares no contexto dos Cuidados Paliativos e do luto antecipatório. Foram conduzidas entrevistas semiestruturadas com 14 familiares de pacientes em Cuidados Paliativos. Os dados foram analisados com base na Grounded Theory, com auxílio do software ATLAS.ti 7.5. Os resultados revelaram que as estratégias de enfrentamento foram atravessadas pelo processo marcado pelos significados atribuídos à morte, pelas conversações sobre esta, pelas implicações do processo de fim de vida, e pelo planejamento da morte. Observaram-se estratégias destinadas à resolução de problemas para contornar as emoções, com base nas relações interpessoais e na religiosidade/espiritualidade. Destaca-se a importância de reconhecer essas estratégias e sua expressão como indicadores do luto antecipatório, a fim de melhor subsidiar as intervenções no contexto dos cuidados paliativos

The anticipatory grief puts the relatives in front of the necessity to articulate coping strategies, in the face of the demands in the Palliative Care. This qualitative study aimed characterize the family members' strategies for coping in the context of Palliative Care and anticipatory grief. There were realized interviews with 14 relatives of patients in Palliative Care. The data were analyzed based on Grounded Theory, with assistance of ATLAS.ti 7.5. The results indicated that the strategies for coping were crossed by the process marked by the meanings assigned to death, by the conversations about this, by the implications of the end-of-life process. Strategies for solving problems were observed, to overcome emotions, based on interpersonal relationships and religiosity/spirituality. Stands out the importance of the recognition such strategies and their expression, as indicators of nticipatory grief, in order to subsidize the interventions in the palliative care context

Las demandas de los Cuidados Paliativos y el duelo anticipado ponen a los familiares ante la necesidad de articular estrategias de afrontamiento. Este estudio cualitativo tuvo como objetivo caracterizar las estrategias de afrontamiento de los miembros de la familia en el contexto de los cuidados paliativos y del duelo anticipatorio. Se realizaron 14 entrevistas a familiares de pacientes cuidadores. Los datos se analizaron en base a Grounded Theory, con la ayuda del software ATLAS.ti 7.5. Las estrategias de afrontamiento fueron atravesadas por los significados atribuidos a la muerte, por las conversaciones sobre ella, por as implicaciones del proceso del fin de la vida. Para superar las emociones se observó estrategias para la resolución de problemas, basadas en las relaciones interpersonales y la religiosidad/espiritualidad. Se destaca la importancia de reconocer tales estrategias y su expresión como indicadores de duelo anticipatorio, para mejor subsidiar intervenciones en los cuidados paliativos

Anticipatory grief and experience of providing at-home palliative care among informal caregivers of spouses in Croatia: a qualitative study.

BACKGROUND: In 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. METHODS: A 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. RESULTS: The 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. CONCLUSIONS: Anticipatory 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.

The Relationship Between Pre-Loss Grief, Preparedness and Psychological Health Outcomes in Relatives of People With Cancer.

The aim of this study was to examine the simultaneous effects of pre-loss grief, preparedness for death and preparedness for caregiving on different psychological health outcomes in relatives of people with cancer. Two hundred ninety-nine relatives of people with cancer participated in a cross-sectional online survey. Participants were included if they spoke German and were 18 years or older. Multivariate regression analysis was conducted. Pre-loss grief was significantly associated with depression (ß = .388, p < .001), anxiety (ß = .429, p < .001), somatization (ß = .221, p < .001) and satisfaction with life (ß = -.205, p < .001). Preparedness for death was significantly associated with somatization (ß = -.247, p < .001). Results suggest that people with high scores in pre-loss grief and low scores in preparedness for death are in need of early support. Interventions should address pre-loss grief and the various aspects of preparedness for death and take into account the psychological health in relatives of people with cancer. Future studies should investigate underlying mechanisms.