Despite all the investment in research, uncertainty persists in anticipatory grief (AG) literature, concerning its nuclear characteristics and definition. This review aimed to synthesize recent research in order to develop further knowledge about the family experience of AG during a patient’s end of life. An integrative review was performed using standard methods of analysis and synthesis. The electronic databases Medline, Web of Knowledge, and EBSCO and relevant journals were systematically searched since 1990 to October 2015. Twenty-nine articles were selected, the majority with samples composed of caregivers of terminally ill patients with cancer. From systematic comparison of data referring to family end-of-life experience emerged 10 themes, which correspond to AG nuclear characteristics: anticipation of death, emotional distress, intrapsychic and interpersonal protection, exclusive focus on the patient care, hope, ambivalence, personal losses, relational losses, end-of-life relational tasks, and transition. For the majority of family caregivers in occidental society, AG is a highly stressful and ambivalent experience due to anticipation of death and relational losses, while the patient is physically present and needed of care, so family must be functional and inhibit grief expressions. The present study contributes to a deeper conceptualization of this term and to a more sensitive clinical practice.
The end-of-life trajectory of cancer patients in palliative care (PC) elicits an anticipatory grief (AG) process in family caregivers (FCs). Although widely recognized, AG lacks conceptual clarification. This study aims to qualitatively explore the experience of FCs of patients with terminal cancer to identify the core characteristics and the specific adaptive challenges related to AG in the context of end-of-life caregiving. Data were collected through in-depth semi-structured interviews conducted in a clinical sample of 26 FCs of cancer patients in PC. Findings from thematic analysis suggest that the AG experience is characterized by traumatic distress from being exposed to life-threatening conditions and the separation distress induced by loss anticipation and current relational losses, challenging the FCs to long-term emotional regulation effort demands. These results contribute to the conceptualization of AG and may inform intervention programs for the main challenges the FCs face when adjusting to loss during end-of-life caregiving.
The loss of a loved one can affect family dynamics by changing the family system and creating the need for family members to reorganize. Good family functioning, which is characterized by open communication, expression of feelings and thoughts and cohesion among family members, facilitates adaptive adjustment to the loss. This study conducted a systematic review of the literature on family dynamics during the grieving process. A search was conducted in the EBSCO, Web of Knowledge and Bireme databases for scientific articles published from January 1980 to June 2013. Of the 389 articles found, only 15 met all the inclusion criteria. The selected studies provided evidence that dysfunctional families exhibit more psychopathological symptoms, more psychosocial morbidity, poorer social functioning, greater difficulty accessing community resources, lower functional capacity at work, and a more complicated grieving process. Family conflicts were also emphasized as contributing to the development of a complicated grieving process, while cohesion, expression of affection and good communication in families are believed to mitigate grief symptoms.
1 March 2018 in Current Opinion in Supportive & Palliative Care
Purpose of review: This review aims to synthesize recent findings on anticipatory grief in caregivers, referring to its phenomenology, assessment and clinical interventions. Recent findings: Recent literature illustrates the wide scope of the current use of the term anticipatory grief, reflecting caregivers’ experiences in different end-of-life trajectories. The anticipation of death is the distinctive aspect of anticipatory grief in the predeath grief continuum, encompassing several progressive losses, past and future. Recently developed assessment instruments capture key aspects of this experience, such as separation anxiety, anticipation of death and future absence of the person, denial and relational losses. Recent findings on prevalence of clinically significant predeath symptoms in caregivers range from 12.5 to 38.5%. Beyond personal and relational factors, difficult circumstances of end-of-life care significantly interfere in adjustment to anticipatory grief. Useful therapeutic interventions were identified, such as validation of grief feelings, increased coping and self-care, anticipation of future losses and reframing roles. However, rigorous interventional studies are needed to create guidelines and the manualization of specific therapeutic approaches to caregiver anticipatory grief. Summary: Findings suggest that anticipatory grief dynamics in different end-of-life trajectories should be recognized and adequately assessed. Clinical interventions considered useful to support anticipatory grief caregivers are presented, but further research is needed to verify effectiveness.
Background: Palliative care teams’ support practices for bereavement vary substantially. Clinical guidelines are needed to promote concerted, evidence-based intervention. The goal of the present study is to identify and synthesize the principles and clinical guidelines that ensure best practices in bereavement support for family caregivers accompanied in palliative care.Methods: A scoping review was conducted based on a systematic search of articles in academic databases (EBSCO, PsycINFO, PubMed, Web of Science, Psychology and Behavioral Sciences Collection, Scopus) and Google (2010–2024). The review included articles focused on the principles, guidelines, and clinical recommendations for bereavement support for adult family caregivers in palliative care. Quality appraisal of guidelines was conducted using the AGREE II instrument.Results: Of the 1,489 references identified, 20 documents were included, mostly governmental or institutional norms and clinical guidelines from gray literature. Quality appraisal revealed gaps in evidence selection, resource implications, updates and monitoring criteria. Eight fundamental principles were identified, from which several clinical guidelines were derived, organized according to the moments of assessment and intervention throughout the bereavement process, including pre and post-death period: (1) organizing support for the family caregiver; (2) assessing needs and establishing a care plan; (3) ensuring information and support for the family caregiver; (4) preparing for death; (5) support at the time of death; and (6) bereavement support post-death. In addition to universal support and information measures, regular assessment procedures should be adopted for timely referrals based on individual needs.Discussion: These guidelines cover the temporal variation of care and the multidimensional and multiple-actor nature of palliative care. Implementing these guidelines and evaluating their impact will allow for the standardization of best practices and improve the quality of bereavement support in palliative care.
Objective: This study aimed to contribute to the validation of the Portuguese version of the Prolonged Grief Disorder Questionnaire–Predeath (PG–12), examining its psychometric properties, including factorial, discriminant, and predictive validity. The prevalence of predeath prolonged grief disorder (PGD) and its psychosocial correlates were also analyzed.Method: The PG–12 was assessed in a sample of family caregivers (FCs) of oncological patients in palliative care. The factorial and discriminant validity of the PG–12 were evaluated by confirmatory factor analysis. The prevalence of predeath PGD was calculated and correlated with sociodemographic characteristics, perception of illness, intensity of care, coping, and caregiver burden. Prospective data were used to assess predictive validity.Results: The sample was composed of 94 FCs, mostly female (78.8%) and daughters (61.3%), with a mean age of 52.02 (SD = 12.87). The PG–12 has been shown to be reliable, to have high internal consistency, to be monofactorial in structure, and to be independent from depression, anxiety, and burden, although predeath grief influences these symptoms. In our sample, 33% met the criteria for predeath PGD. The circumstances and coping mechanisms are also correlated with predeath grief. The PG–12 has also been shown to be predictive of postdeath outcome.Significance of results: The PG–12 can be a useful screening tool for early identification of risk for maladjustment to loss among family caregivers.