Search Results (24)

Background/Objectives: Recognizing and managing grief is particularly important in nursing, especially from the perspective of family caregivers. In this qualitative study, we aim to understand the grieving process of family caregivers, focusing on what happens before the death of an adult family member due to chronic illness, and to identify the factors influencing the grieving process in this context. Methods: This study is an outcome of a broader study which aimed to understand how family caregivers grieve during the first year following the death of an adult family member due to a chronic illness. This article will only address the influencing conditions that emerged from data related to events that occurred prior to the person’s death. A theoretical sample was gathered through semi-structured interviews with 20 bereaved family caregivers. Data were collected and then analyzed independently by the research team using the three stages and principles of Strauss and Corbin’s grounded theory. Results: Adaptation was identified as the central category. Before death, the family caregiver undergoes two adaptive processes: adapting to their new role and preparing for the imminent loss. As they adapt to this loss, they become aware of the seriousness of the illness and the inevitability of death, opening the possibility for the grieving process to begin. The process is influenced by personal and contextual factors as well as interaction-related factors, including access to information, satisfaction with the care provided, recognition of their efforts, and feelings of abandonment or interaction with healthcare professionals. A wide range of emotions and feelings are experienced. This experience is colored by hope and anticipatory grief. The meaning of the dying process is explored and expectations are redefined. Conclusions: The grieving process experienced by family caregivers is an adaptive process that begins before the patient’s death. Some conditions can be modified before the patient’s death; in this case, nurse interventions can enhance the experience of family caregivers. Full article

Background/Objectives: Severe brain injuries generate complex, long-term needs requiring intensive physical, cognitive and relational care. These conditions also profoundly affect families, who often experience emotional distress, uncertainty and a heavy caregiving burden. Although neuro-palliative care is increasingly recognised, the early integration of palliative care for this population remains limited. This study aimed to explore healthcare professionals’ perceptions of the palliative care needs of patients with severe brain injuries and their caregivers and to identify factors that hinder or facilitate early palliative care implementation in specialised settings. Methods: An interpretive qualitative study was conducted using Reflexive Thematic Analysis. Fifteen semi-structured narrative interviews were carried out with healthcare professionals working in specialised hospital units in Northern Italy. Data were analysed inductively through an iterative and reflexive process following Braun and Clarke’s six phases. Methodological rigour and transparency were ensured using the COREQ checklist. Results: Five themes were identified: (1) intensive, individualised patient care needs with complex communication issues; (2) palliative needs centred on dignity, quality of life and early integrated management; (3) caregivers’ involvement and expectation-related difficulties; (4) continuous or anticipatory grief requiring structured psychological support; (5) facilitators and barriers influencing care pathways. Conclusions: Healthcare professionals identify intertwined and evolving palliative care needs in both patients with severe brain injuries and their families. The findings highlight the perceived importance of early, integrated and multidisciplinary neuro-palliative care models focused on dignity, symptom relief and sustained emotional support. Full article

A diagnosis of acute leukemia (AL) represents a sudden, life-threatening event that places family caregivers (FCs) at high risk for traumatic stress. While traumatic stress symptoms have been documented among FCs later in the cancer trajectory, little is known about how these responses unfold during the immediate peri-diagnostic period, when acute stress disorder (ASD) may emerge, and early intervention could be most impactful. We conducted a qualitative study using a constructivist grounded theory approach to examine early traumatic stress responses among FCs of adults and children with newly diagnosed AL. Semi-structured interviews were conducted with 18 caregivers within the first six months of diagnosis as part of two clinical trials at major cancer centres in Toronto, Canada, and were analyzed iteratively using constant comparative methods. Caregivers described a coherent trajectory of traumatic stress responses across three phases. The anticipatory phase was characterized by prolonged uncertainty, helplessness, and mounting fear during diagnostic investigations. The acute phase, beginning at diagnosis, involved an abrupt shift toward emotional numbing, deliberate avoidance of catastrophic thoughts, and a narrowed focus on immediate tasks, often described as operating on “autopilot.” In the post-acute phase, as patients stabilized and discharge approached, caregivers reported increased emotional access, including grief, anger, and recognition of their own trauma, alongside emerging concerns about long-term caregiving and life disruption. These findings suggest that FCs of individuals with newly diagnosed AL exhibit a phased pattern of traumatic stress responses, marked by an early, adaptive dissociative coping response followed by delayed emotional processing, underscoring the importance of phase-sensitive psychosocial care in oncology. Full article

Dementia caregiving represents a major public health challenge, with spousal caregivers assuming the greatest burden. Spouses, themselves typically older adults, provide high intensity, long-term, and largely unpaid care across all stages of cognitive decline. Despite their central role in dementia care, the health consequences experienced by spousal caregivers remain insufficiently characterized in the literature and inadequately addressed in clinical and public health practice. This structured narrative review synthesizes current evidence on the multidimensional impact of dementia caregiving on the physical, psychological, cognitive, social, and financial health of spousal caregivers. It further contextualizes these consequences within the trajectory of dementia progression, and identifies interventions, support systems, and policy considerations necessary to mitigate caregiver burden. Spousal caregivers experience disproportionate burden due to continuous, escalating responsibilities that often mirror the progressive deterioration of their partners. Emotional burdens, including uncertainty during pre-diagnostic stages, role strain, conflict, loss of intimacy, and anticipatory grief. Physically, spouses endure musculoskeletal strain, sleep disruption, poor nutrition, and heightened frailty risk. Psychologically, spousal caregivers exhibit elevated rates of depression, anxiety, loneliness, and stress-related disorders. Socially, caregivers experience substantial isolation, stigma, and erosion of social networks. Financial hardship, including early retirement, reduced employment, and uncompensated care hours, further exacerbate stress. Evidence suggests that chronic caregiving stress contributes to biological changes such as immune dysregulation, inflammation, acceleration, aging, and potential cognitive decline in caregivers themselves. Caregiver burden influences patient outcomes as evidenced by increased emergency department use, falls, and earlier institutionalization in persons with dementia whose caregiver is subjected to a high burden. Current care models rarely include routine, caregiver assessment or structured guidance following diagnosis, resulting in substantial unmet needs. Effective mitigation requires integrated, stage-sensitive interventions, including psychosocial support, caregiver education, respite services, culturally tailored programs, and digital health tools, alongside broader policy reforms to reduce financial and structural barriers. Full article

Cancer caregiving is increasingly recognized as a major psychosocial challenge, yet the mental health needs of caregivers remain insufficiently addressed in oncology research and practice. This narrative review examines the experiences of cancer caregivers within the context of rising cancer incidence and prolonged survival, conditions frequently accompanied by sustained psychological burden and anticipatory grief, with particular attention to depressive symptoms. Relevant qualitative and quantitative studies were identified through targeted searches of major databases (PubMed, Scopus, PsycINFO, and Google Scholar), including studies published up to January 2026. Study selection was guided by conceptual relevance and applied significance to the intersection between religiosity, spirituality, caregiving, and mental health outcomes. The reviewed literature highlights substantial psychological burden among caregivers, with depression affecting approximately 20–40% of cancer caregivers and identifies religiosity and spirituality as potentially supportive resources. Across studies, recurrent themes include meaning-making, hope maintenance, emotional regulation, moral orientation, and perceived social support as mechanisms through which these dimensions are associated with lower levels of depression and improved psychological adjustment. Evidence suggests that both religiosity, understood as the lived engagement with religious values, and spirituality, defined as a broader existential orientation toward meaning and purpose, contribute to coping in caregiving contexts; however, findings remain heterogeneous and largely based on cross-sectional analyses. Notable gaps persist, including limited caregiver-specific research, conceptual imprecision, and a lack of longitudinal designs. By integrating conceptual clarification with empirical synthesis, this review outlines potential psychological pathways linking religiosity and spirituality to caregiver mental health outcomes. In summary, religiosity and spirituality are considered adjunctive, non-exclusive resources that complement conventional psychological and psychiatric care within comprehensive models of caregiver support. Full article

Background: Alzheimer’s disease (AD) is a progressive neurodegenerative disorder that severely affects cognitive, behavioral, and functional abilities, creating a substantial burden for family members who provide continuous care. Caregivers often experience role changes, occupational imbalance, emotional distress, and reduced quality of life, although some report personal growth. These experiences extend beyond active caregiving and include anticipatory grief during disease progression and grief after the relative’s death. Despite this continuum, few studies have examined caregiving, loss, and bereavement from an integrative perspective. This protocol describes a mixed-methods study aimed at exploring the lived experiences of family caregivers of individuals with AD, focusing on how evolving relational, occupational, and identity-related losses influence their well-being and adaptation. Methods: A parallel convergent mixed-methods design will be used. The quantitative component consists of a cross-sectional observational study including 66 caregivers recruited through purposive sampling across kinship categories (spouse/partner, adult child, grandchild) and care settings (home care with day-center attendance vs. institutionalized care). Data will be collected using the Zarit Burden Interview, Role Checklist, Short Form-36 Health Survey, and Occupational Balance Questionnaire. Descriptive and subgroup analyses will be conducted using SPSS (version 27). The qualitative component comprises a multiple-case study with approximately 36 participants across three groups: caregivers living with individuals with AD, caregivers of institutionalized relatives, and bereaved family members. Semi-structured interviews (45–80 min) will be conducted online or in person, transcribed verbatim, and analyzed thematically using MAXQDA (version 26). Integration will follow a concurrent approach, combining quantitative and qualitative results through joint narratives and displays to produce a comprehensive interpretation. Discussion: This study aims to deepen understanding of the caregiving–grief continuum in families affected by AD by integrating quantitative indicators of burden, health status, and occupational balance with qualitative accounts of adaptation and meaning-making. Findings are expected to support the development of holistic, evidence-based interventions that promote caregiver well-being throughout the care trajectory and during bereavement. Ethics and Dissemination: Ethical approval was granted by the Research Ethics Committee of Universidad Rey Juan Carlos (Code: 041220246522024; 15 October 2025). ClinicalTrials.gov Identifier: NCT07251738. Registered November 2025. Protocol version: Version 2. Full article

This article examines how Turkey’s 2024 amendment to the Animal Protection Law reshapes volunteer caregiving for free-roaming dogs in Istanbul by reconfiguring the practical conditions under which care is sought, coordinated, and sustained. Drawing on 43 in-depth interviews and five months of fieldwork (1 July–30 November 2025), this study combines constructivist grounded theory with reflexive thematic analysis to trace how legal change is encountered through everyday governance interfaces and how these encounters reorganize caregivers’ routines, capacities, and moral worlds. The analysis yields four interlocking findings. First, caregivers describe a temporality of “living in pre-loss,” in which anticipated removal, disappearance, and uncertain outcomes generate chronic vigilance, anticipatory grief, and ambiguous loss without closure. Second, caregiving is increasingly recalibrated as risk management: commitments persist, but intervention narrows through heightened exposure to complaints, reputational scrutiny, and fears that help-seeking may backfire. Third, institutional pathways—hotlines, shelter intake, and municipal responses—are experienced as discretionary and opaque, producing a fluctuating threshold between assistance and harm that conditions whether caregivers engage official systems at all. Fourth, this study identifies a recurring veterinary bottleneck at the street–clinic–recovery handover, where limited short-term holding capacity stalls treatment trajectories and displaces recovery labor into precarious domestic and informal spaces. Together, these findings argue that caregiver well-being is not ancillary to animal welfare governance but constitutive of it. It shapes the continuity of monitoring, the timeliness of intervention, and the everyday mediation through which coexistence is maintained under intensified legal and political pressure. Full article

Animal-assisted services (AAS) depend on volunteer handler–dog teams, yet the emotional and relational impacts on volunteers when their therapy dog dies or retires remain largely unexplored. This study examines AAS volunteers’ experiences following the death or retirement of their therapy dog partner. An online, anonymous cross-sectional survey was administered between January and June 2025. A total of 247 individual responses were analyzed. Over half of survey participants (56%) had lost a therapy dog to death, and 36.6% had retired a dog. Although most volunteers who resumed AAS with a new dog reported excitement and renewed purpose, many experienced sadness linked to their previous partner. Retirement decisions were primarily driven by dog welfare concerns and were often experienced as an ambiguous loss. Social constraints were common; participants frequently perceived minimization or discomfort from others when attempting to discuss their grief. In conclusion, therapy dog death and retirement represent significant emotional and relational losses for AAS volunteers. Organizational practices, including anticipatory retirement planning, welfare-centered guidelines, recognition rituals, and structured support during successor-dog transitions may help mitigate distress and foster healthy adjustment. Findings are discussed in relation to theory-informed, practical implications for animal-assisted service practitioners and organizations. Full article

Background/Objectives: Caring for dementia patients involves a significant emotional burden for family caregivers, who confront anticipatory grief (AG) processes that can negatively affect their health-related quality of life (HRQoL). This study examines the mediating role of resilience in the relationship between AG and HRQoL. Methods: A cross-sectional study was conducted with 144 family caregivers of people with dementia in the province of Alicante (Spain). Validated instruments were applied to measure AG (Caregiver Grief Scale), HRQoL (SF-12), and resilience (Brief Resilient Coping Scale). Descriptive analyses, Pearson correlations, and hierarchical regressions were used, as well as a mediation model based on Hayes’ PROCESS macro. Results: AG was negatively associated with resilience (r = −0.19, p = 0.025) and with both mental (r = −0.24, p = 0.004) and physical (r = −0.22, p = 0.009) components of HRQoL, whereas resilience was positively associated with mental HRQoL (r = 0.35, p < 0.001). In regression analyses, AG (B = −3.36, p = 0.006) and resilience (B = 1.16, p < 0.001) were significant predictors of mental HRQoL, explaining 30.4% of the variance (R² = 0.30). Mediation analyses showed a significant indirect effect of AG on mental HRQoL through resilience (B = −1.28, 95% bootstrapped CI [−2.31, −0.84]), indicating partial mediation. Conclusions: Although AG negatively impacts HRQoL, resilience emerges as a relevant protective resource, especially for caregiver mental health. Therefore, it is crucial to promote resilient coping strategies in interventions that target this vulnerable population. Full article

Background/Objectives: Huntington’s disease (HD) is an autosomal dominant, neurodegenerative disorder that, because of the availability of presymptomatic genetic testing, places at-risk individuals in an anticipatory situation of great emotional, ethical, and social complexity. This review synthesizes the subjective experiences and coping strategies of individuals aware of their genetic risk before clinical diagnosis, emphasizing the importance of patient and family narratives as critical sources of evidence for enhancing care protocols. Methods: This work is a narrative review supported by a systematic literature search. Of the 75 studies analyzed, 22 met the inclusion criteria—i.e., qualitative research, reviews, and case studies addressing emotional, cognitive, behavioral, and ethical coping mechanisms. The information was structured within a thematic matrix, and inductive coding was applied to identify recurring patterns, unresolved tensions, and gaps in the literature. Results: Presymptomatic genetic diagnosis may trigger processes of anticipatory grief, disrupt individual and familial identity, and lead to constant somatic self-monitoring. Coping strategies vary from proactive approaches—e.g., seeking information and building support networks—to narrative reframing that emphasizes acceptance and the resignification of risk. Analyzing these narratives allowed us to identify silenced ethical dilemmas and family rituals that help alleviate uncertainty—dimensions often overlooked by traditional quantitative methods. Moreover, risk awareness also impacts reproductive and care planning decisions, underscoring the importance of ongoing, context-sensitive support. Conclusions: Coping with genetic risk in Huntington’s disease extends beyond the biomedical aspects to encompass relational, ethical, and narrative dimensions. Incorporating narrative-based medicine into genetic and psychosocial counseling is crucial for identifying implicit needs and providing more empathetic, individualized care. Full article

Background/Objectives: Family caregivers in palliative care often face complex physical, emotional, and logistical challenges, which can result in a significant caregiving burden. Dyadic interventions—designed to support both the patient and the caregiver simultaneously—have emerged as a promising holistic approach to enhancing well-being and quality of life. This systematic review aimed to evaluate the effects of dyadic support interventions in reducing caregiver burden among middle-aged and older adults receiving palliative care. Methods: A systematic literature search was conducted following PRISMA guidelines across five databases (CINAHL, MEDLINE, Web of Science, Scopus, and Google Scholar for grey literature) covering the period from 2019 to January 2025. Results: Of 653 records identified, 8 studies met the inclusion criteria. Interventions were typically delivered by multidisciplinary teams and included weekly in-person consultations, telephone follow-up, telemedicine, physical exercise sessions, laughter therapy, and music therapy over durations ranging from 16 weeks to 6 months. These programs resulted in reduced anxiety and depressive symptoms (PHQ-4, HADS, SDS, BAI, SAS), improved functional and social performance (SF-36), and/or enhanced quality of life (MQLQ, QOL-AD, KCCQ-12, EORTC QLQ-C30). In patients, they contributed to better symptom control (ESAS, CFS), while in caregivers, they effectively reduced burden (ZBI-12, FCBSI, CBI) and/or supported the anticipatory grief process (PGQ, AGS). However, not all studies reported consistently positive outcomes. Conclusions: Structured dyadic interventions that involve both patients and caregivers significantly improve outcomes in palliative care for middle-aged and older adults. Future research should examine their long-term impact and explore the integration of artificial intelligence to optimize intervention delivery. Full article

Background/Objectives: Grief in cancer patients represents a multidimensional psychological response encompassing anticipatory, existential, and identity-related distress. While the recent literature has examined grief in caregivers, family members, and even healthcare professionals, the psychological grief experienced by patients themselves following a cancer diagnosis remains comparatively understudied and insufficiently characterized in empirical research. This systematic review aims to evaluate observational studies that used validated psychometric instruments to measure grief in adult cancer patients and to synthesize findings on the significance of grief in this population. Methods: Following PRISMA 2020 guidelines, a systematic search of PubMed, CINAHL, and PsycINFO was conducted to identify observational studies that employed validated tools to assess grief among adult cancer patients. The inclusion criteria required the use of psychometrically validated grief instruments and the collection of quantitative data. Fifteen studies met eligibility criteria and were included in the final analysis. Results: Grief symptoms were consistently present at moderate to high levels across diverse cancer types, care settings, and geographic regions. Preparatory Grief in Advanced Cancer (PGAC) scores often exceeded thresholds associated with clinical concern, with correlations observed between grief and psychological variables such as anxiety (r = 0.63), depression (r = 0.637), hopelessness (r = 0.63), and dignity (r = 0.654). Demographic factors (e.g., younger age, female gender) and illness perceptions (e.g., identity centrality, stigma) further intensified grief. Grief was a predominant psychological concern even when general distress measures failed to capture its presence. Conclusions: Future research is essential to identify an effective public health strategy for addressing grief through structured screening conducted in primary care and outpatient medical settings, coupled with accessible referral pathways to community-based support groups and coordinated follow-up services to facilitate grief management. Full article

This paper explores suicidality and suicide research from an autoethnographic analysis framed through grief concepts. Self-identifying as a Muslim in the United States, the author explains how lived experiences being racialized through Islamophobia, identifying as a genderfluid non-binary woman, being socially biracial, holding a postpartum bipolar diagnosis, and being connected to a diaspora, are critical elements to develop a deeper sociocultural understanding of suicide. Grief concepts that are used to analyze these themes include disenfranchised grief, ambiguous loss, anticipatory grief, and secondary loss. While these grief concepts are understood as part of the author’s embodied lived experience as an individual, there is also a collective grief that is explored through the author’s bilingual experience with Arabic as it relates to the topics of suicide and genocide occurring in the Arabic-speaking diaspora located in Gaza, Palestine. A conceptual framework is offered to make sense of the author’s lived experience by both incorporating and challenging existing academic perspectives on suicide and research. The emic, or insider, perspective is contextualized such that it may hold implications beyond the individual author, such as for U.S. Muslims and other hard-to-reach populations. A positionality statement demonstrates the author’s reflexivity of being an insider ‘participant’–researcher in conducting transformative research approaches with the U.S. Muslim community. Further directions are shared for scholars with lived experience who may seek to utilize comparable individual or collaborative autoethnographic approaches with such majority-world communities. Full article

Prolonged grief disorder, also known as post-loss grief, was officially recognized in the International Classification of Diseases (ICD-11) after years of debate within the mental health community. However, while post-loss grief gained recognition, anticipatory and preparatory grief, which occur before a loss, have remained underexplored. Preparatory grief affects individuals nearing the end of life, while anticipatory grief impacts the loved ones of those who are about to die. These grief types are particularly prevalent among women, who are more vulnerable to their emotional and psychological challenges. The primary aim of this study was to investigate preparatory grief in women diagnosed with cancer and anticipatory grief in their loved ones, with the goal of developing management guidelines. The secondary objective was to identify protective factors, such as psychotherapeutic interventions and systemic support, to alleviate grief-related distress. This review synthesized evidence from the PubMed and Cochrane databases, covering studies from 1968 to 2020 and after the COVID-19 pandemic in 2023. The results revealed that anticipatory grief was common among loved ones, leading to increased emotional distress, while cancer patients experienced preparatory grief, facing both emotional and practical challenges. Both types of grief were associated with altered stress responses, such as lower diurnal cortisol levels. Psychotherapeutic interventions, particularly early and systemic psychotherapy, were found to effectively reduce symptoms of both anticipatory and preparatory grief, improving coping strategies and emotional well-being. The study concluded that empowering coping strategies and social support played key roles in enhancing emotional outcomes for both patients and their families. Full article

The paper discusses ecological grief as a particular affective phenomenon. First, it offers an overview of several philosophical accounts of grief, acknowledging the heterogeneity and complexity of the experience that responds to particular personal points of importance, concern and one’s identity; the loss triggering grief represents a blow to these. I then argue that ecological grief is equally varied and personal: responding to what the grieving person understands as a loss severe enough to present intelligibly a degradation of her life and the world, to their meaningfulness or even sustainability. More specifically, both personal and ecological grief may manifest in an eroded sense of the future as a space in which one would invest oneself with plans, projects, ideas, desires, and endeavours. On the other hand, personal grief is, in some cases, conceptualised as having embedded the inherent possibility to come to closure or “move on” (e.g., by marrying again), while with ecological grief, the intelligibility of overcoming (replacing) the loss may be, depending on its scale, severely limited. I argue that this erosion of the future need not take the shape of paralysing sadness but rather of a disruption of taking some options of projecting oneself into the future seriously or as real. Full article