While systemic healthcare challenges in low-resource settings are well-documented in Haiti, the lived experiences of persons with disabilities navigating these challenges remain underexplored. This study examines how Haitian adults with physical disabilities acquired during the country's most devastating earthquake address their health needs amid unreliable healthcare access. Using Interpretative Phenomenological Analysis (IPA) of semistructured interviews with 25 participants, the analysis identifies three key strategies: (a) leveraging community efforts to build informal caregiving networks, (b) co-constructing caregiving practices through mutual teaching and experiential knowledge, and (c) adapting caregiving roles to address healthcare gaps under resource constraints. These strategies illustrate both the potential and the limitations of community-driven caregiving in contexts where formal support is needed. Participants redefined caregiving as a relational and adaptive process that integrates individual and collective efforts to navigate systemic barriers. Findings underscore the importance of community-based interventions that amplify local innovations and address the specific needs of underserved populations.
Care partners often struggle with confidence in managing their own health. The mediating effect of self-efficacy on a care partner's mental health and social loneliness was explored. Standardized measures assessed loneliness, care partner self-efficacy, depression, and anxiety. Participants included 95 care partners who completed a survey measuring anxiety, depression, loneliness, and self-efficacy. Direct effects in the first mediation model were significant for loneliness on self-efficacy; self-efficacy on anxiety; and loneliness on anxiety. The indirect mediation effect of loneliness on anxiety through self-efficacy was significant. Direct effects in the second mediation model were significant for loneliness on self-efficacy; self-efficacy on depression; and loneliness on depression. Indirect mediation effects of loneliness on depression through self-efficacy were significant. Findings showed self-efficacy's buffering function on depression and anxiety. The current study underscores the need to educate and train providers on the importance of ADRD care partner self-efficacy when addressing their mental health and isolation.
This paper offers an auto-ethnographic examination of the author's journey as a grief researcher, capturing how academic and personal identities have evolved through engagement with the emotional terrain of grief studies. Using auto-ethnography as both method and content, the paper draws exclusively from the author's experiences, journal entries and embodied reflections, rather than from secondary sources or participant data. Reflecting on experiences from the early days as a student to the current phase as a developing scholar, the study explores the ontological dimensions of learning, particularly the challenges and transformations involved in the researcher's role. Drawing on concepts of epistemological and ontological identity and view of writing as a mode of ‘knowing’, the author examines the ontological progression that emerges through grief research. Writing becomes a means of navigating ongoing ‘discursive struggles for identity’, offering insight into the evolving self within the present moment.
The study aims to demonstrate how death work, driven by religious motivations in Turkey, transforms into a stigmatized and polluted form of emotional labor during earthquakes. Attempting to integrate the concept of “dirty feelings” with death ethnography, the study focuses on how the emotional burden arising from contact with dead bodies intensifies the challenges of this labor. Employing a qualitative research design, the study combines participant observation and in-depth interviews with religious personnel assigned to earthquake zones by the Presidency of Religious Affairs (PRA). It discusses the factors contributing to this process of pollution and devaluation and examines how death work contaminates individuals in modern society. The study's originality and contribution to the literature reveal how the emotional suppression required to maintain perceived authority and fulfil their responsibility during disasters generates a sense of contamination for religious personnel.
The experiences and meanings assigned to pregnancy loss are deeply influenced and shaped by the socio-cultural context of affected women. However, very limited studies have examined the influence of cultural norms and beliefs on how Black women make sense of pregnancy loss from a Canadian context. This study explored ways cultural norms and beliefs influenced Black Canadian women's journey after pregnancy loss. An exploratory qualitative design was used as part of a larger study exploring the experiences of Black Canadian women following a pregnancy loss. We used purposive and snowball sampling to recruit 32 Black Canadian women with lived experiences of pregnancy loss. Semi-structured interviews were conducted, and thematic analysis was used to organize the data into meaningful themes. Five themes shedding light on the experiences of Black Canadian women were identified: (i) living with the stigma, (ii) grappling with the silence, (iii) enduring the shame, (iv) dealing with the stereotype, and (v) calling for awareness. These experiences impeded emotional healing, access to community support, and reintegration into family and community. Participants also called for greater awareness to address the cultural myths and misconceptions surrounding pregnancy loss. The findings underscore the need to create a culturally sensitive awareness campaign to foster greater understanding about the causes of pregnancy loss, reduce the stigma associated with the experience, and facilitate open dialogue. Such actions will contribute to normalizing the experiences of pregnancy loss and increase access to community and social support.
On August 4, 2020, an explosion at the Beirut port tore half of Lebanon's capital and left 233 dead and 6,500 injured. This blast led to the loss of loved ones, causing many survivors to endure both trauma and bereavement. This cross-sectional study aimed to investigate the correlation between attachment, prolonged grief, and posttraumatic growth in Lebanese adults who have experienced the traumatic loss of a loved one due to the explosion. The results showed a positive correlation between secure attachment style and prolonged grief. Women and individuals with a higher financial status had lower prolonged grief scores. Being younger and unmarried were associated with higher posttraumatic growth. Contrary to previous studies, secure attachment did not play the role of a protective factor against prolonged grief, nor promote posttraumatic growth. The findings indicate a nuanced influence that attachment can have on posttraumatic growth and prolonged grief.
Given recent attention on the importance of community-based health with respect to those who have been historically marginalized, this paper addresses the multiple layers of colonial traumas that have been inscribed on the body, culture, and the psyche of minorities. The argument is that community-based art, grounded on antiessentialist philosophy, may provide both a critique and resistance to the existing status quo that continues to reproduce a colonial normalcy that is detrimental to the health of community members. Against this backdrop, the themes that inspired these pieces are reflective of the collateral damages that are ushered in by colonial imperialism. I borrow from Edward Said's Orientalism and the experience of being an Orient that has been transformed into the constant themes of turmoil, trauma, discomfort, and intensity which are all plastinated, frozen in place, in the image of the oppressor. Those who bear generational trauma endure the pain of colonialism, imperialism, and capitalism predating their existence, suffering effects they did not cause. Hiding behind the logic of Enlightenment (pursuit of reason, objectivity, and scientific worldview), the dominant structures of the United States prey upon the marginalized communities through the tool of transparency. This subtle, yet real, violence is the source of the consequences known as vibrations of absence. This paper attempts at negating (denouncing) the legitimacy of a dualistic conception of the world that allows for colonialism to thrive, and positing (announcing) artwork through opacity that employs a community-based philosophy as a form of healing that resists and condemns normalized violence.
This study examines terminal lucidity (TL) as a health promotion challenge in end-of-life care. It explores TL as a phenomenon, debates its classification as a natural or pathological occurrence, and investigates its emotional and social impacts on healthcare professionals, caregivers, and family members. A mixed-methods systematic review of 21 studies—spanning qualitative, quantitative, and mixed-method designs—was conducted using 10 academic databases. Studies were assessed for quality using the CASP, JBI checklist, and mixed-methods appraisal tools. The findings were narratively synthesized to examine TL's nature, classification, and significance. TL was characterized as a sudden return of cognitive clarity near death, with conflicting perspectives on its classification. While some viewed it as a natural part of the dying process, others argued for further research into its neurological basis. Across all studies, TL was associated with significant emotional effects, including joy, grief, and confusion, underscoring its impact on stakeholders in end-of-life care. TL poses a substantial challenge in end-of-life care, requiring enhanced understanding and preparedness. Educational programs for caregivers and healthcare professionals are essential to address the phenomenon's complexities. Future research should focus on its neurobiological mechanisms, cultural implications, and role in care decision-making to improve end-of-life care practices.
This article introduces two new terms, Grief-ism and Grief-ist , to expose some of the behaviors, actions, inactions, and unrealistic expectations of others (from individual support persons to societal institutions) towards bereaved individuals. In this article, we provide examples of subtle prejudice, discrimination, and marginalization involving those adjusting to significant loss. As well, this work draws attention to the medicalization and policing of the process of grief by well-meaning others. We believe these actions accumulate over time, weigh down those who are grieving loss, and tend to make the grief feel unsupported. As a result, people coping with the loss of a loved one may experience feelings of isolation and, in some cases, a lengthening of the grief process. Our goal is to contribute to ongoing grief literacy efforts and bring attention to how we might improve support for people processing loss. Ultimately, this article highlights the cumulative common burdens of grieving individuals and introduces new terms to consider in hopes of aiding those suffering in bereavement.
Dialog should guide any social interventions, so that relevant services are provided to individuals or communities. There is one group, however, where dialog has been particularly scarce. Although this group encompasses a wide range of issues, the disabled community has been especially marginalized and the voice of these persons is seldom heard. Susan Sontag's acclaimed book, Illness as Metaphor, should resonate with these persons. An initial reading tends to convey the idea that she wants to humanize medicine by enabling ill persons to define their conditions. After all, she deals with language and the storylines persons weave about themselves, their bodies, and their relationships. Due to this orientation, she is thought to have demystified illness. Although Sontag seems to soften the stark approach adopted regularly by medical professionals, she remains committed to the medical model and thus has little to say that is inspiring to the ill and disabled. This manuscript argues that metaphor is a powerful rhetorical device for communicating disease and disability that should be used by the community.
Drawing on the auto/biographical experiences of four women working in the field of death studies as well as on a range of creative, professional, and academic sources about loss and the process of writing, in this article, we explore creativity, innovation and impact, and the strategies on offer in auto/biographical writing about dying, death, and grief. We ask and explore the questions: What is writing doing? When is writing doing? and provide insights into the productive potential of writing as a way to continue bonds ( Klass et al., 1996 ), live with loss and engage with grief. Centrally concerned with how first-person writing can function as a powerful practice for responding to experiences of dying and grief, we take a creative approach to the article that seeks to do what it advocates—to write in the first person, to reflect, and to explore the limits and potential of language to produce meanings from loss. The article intersperses the personal narratives of three writers (Gayle, Tamarin, and Kate) woven together by Bethan with epigraphs from other writers whose work is connected to that offered here in terms of its themes. This practice of collaborative writing, and of citing the work of others from a wide range of backgrounds, suggests and produces connections and intersubjectivities, emphasizing the theme of this special issue—public dying and public grieving—and signals the complicated, inevitably partial, and powerful ways in which writing can function to make grief a shared and public experience.
Introduction: Stroke survivors face significant challenges due to physical and cognitive limitations, leading to various losses that require a grieving process. Objectives: This study aims to (1) identify the specific losses experienced by stroke survivors; (2) describe their perception and experience of these losses; and (3) their adaptation process during the first three months post-hospital discharge. Method: Six stroke survivors were interviewed 3 months after discharge about their perceived losses, the impact on their lives and identity, emotional responses, and sources of support. Thematic analysis was used to interpret the data. Results: Loss of autonomy emerged as the primary concern, leading to secondary losses such as housing, employment, and social engagement. Negative emotions and challenges in identity reconstruction were prevalent, with a predominant focus on recovery. Conclusions: Stroke survivors struggled with accepting their losses within the initial 3 months, highlighting the critical role of healthcare professionals in supporting their adaptation process.
This study was conducted to investigate the effect of death anxiety on the quality of life of Iranian women with breast cancer with the mediation of life expectancy. This research was a cross-sectional study with structural equation modeling; 400 patients were selected by multistage cluster sampling. A questionnaire was used, which included demographic questions, death anxiety, quality of life, and life expectancy scale. The results show that the items have satisfactory internal consistency reliability. Average Variance Extracted (AVE) exceeds the recommended value of 0.5. The model has shown adequate convergent validity and Q^2 values have predictive relationships for the endogenous constructs. By introducing the mediator variable, the coefficient value between death anxiety and quality of life decreased from −0.361 to −0.239. This research showed that with the mediator variable of life expectancy, the negative effect of death anxiety on the quality of life is reduced. This research demonstrates that life expectancy can act as a mediator between death anxiety and quality of life. In other words, when considering the mediating variable of life expectancy, the negative impact of death anxiety on the quality of life is diminished.
The aim of this narrative review is to explore the characteristics of palliative care curriculum developed for high school adolescent and young adults (AYAs). A search was conducted using the databases: ERIC, PubMed, and CINHAL yielding a total of 202 articles. These articles were screened using strategic exclusions and criteria, resulting in five relevant literature works to be analyzed. Results: Characteristics including a variety of designs, methods, and strategies were all identified to have positive participation, feedback, and experiences from high school AYA being provided palliative care curriculum. Conclusions: The literature indicates that the use of subject matter experts within palliative care curriculum for high school students is a core characteristic in meeting the World Health Organizations recommendation to embed palliative care curriculum into public awareness strategies.
Contemporary community-based health promotion is within a complex and transforming social landscape. Traditional place-based understandings of “community” now contend with fluid, transnational, and virtual social networks, shifting definitions of belonging, and developing political, economic, and technological conditions. Community-engaged research (CEnR)—including community-based participatory research (CBPR)—provides a critical framework for addressing these changes. CEnR's focus on partnership, co-learning, and equitable power-sharing places it as a valuable approach to uncovering emerging health priorities, devising contextually relevant interventions, and advancing health equity. This article outlines new directions in community-based health promotion that embrace social complexity, intersectionality, and narrative approaches. This discussion outlines a blueprint for scholars, practitioners, and community members to envision responsive, justice-oriented, and sustainable health promotion strategies that align with communities’ evolving social environments.
The death of a parent's child is a particularly devastating form of loss, and there remains a need to further understand bereaved parents’ experiences to inform the support offered to them. This study makes a unique contribution to this field by focusing on latter stages of grief. Using narrative inquiry, bereaved parents’ stories of grief over time was explored, enriching our understanding of how parents adjust to life following the death of their child. Eight UK-based bereaved parents recruited via a peer support organization participated in semi-structured interviews, which were analyzed using narrative analysis methodologies. Findings are presented using a landscape metaphor, with parents initially navigating “treacherous terrain” in early grief, and then “flat terrain” in later grief which brings new challenges, including feeling less connected to their child, as well as pressure to “put on an act” around others. Findings have important implications for clinical practice and future research.
This qualitative study adds to the limited available practice knowledge for Human Services Professionals (HSPs) working with adults 65 and older. This study examines the current practice knowledge and experiences of HSPs by exploring their perceptions, knowledge, and understanding of late-life cumulative grief and loss. Using Charmaz's constructivist grounded theory approach, 15 semi-structured telephone interviews were conducted and coded that explained HSPs perception, understanding, and assessment of late-life cumulative grief and loss. Connection emerged as a critical component that can inform and educate current and future HSPs on strategies to promote effective engagement, assessment, and intervention methods for older adult clients who have experienced cumulative losses and changes.
This article weighs up the rights and wrongs of witnessing and reporting on the dying of a stranger. As a sociologist interested in death and dying, I have researched hospital end-of-life care. While a patient in the hospital, I was privy to the dying of another patient, whom I could see from my bed. Family members and medical staff discussed the woman's situation within my hearing. The family disagreed with each other about how best to proceed. A palliative care referral was discussed but not acted upon. Inevitably, the woman died, in her semipublic hospital bed. As a researcher, I wish to explore this experience. As a human being, I feel for the woman who died and her family. The paper focuses on the ethics of writing about the dying of my fellow patient, concluding it would be unethical to share any details that would make the people involved recognizable.
The experience of grief and bereavement is an unfortunate part of the human experience. Both emotional and physiological responses to loss are normal reactions to bereavement. The aim of the study was to examine if the type of loss someone experienced was related to the magnitude of their expressed symptomology in a nonwidowed specific sample. Specifically, to determine if there is a difference in physical symptoms between participants who experienced grief due to an out-of-order loss (a death before the age of 55) versus those who experienced grief after a natural life progression loss (a death that occurs after the age of 80). Results confirmed that those who bereaved an out-of-order loss experienced significantly more symptomology, both emotional and physiological, than those who lost a loved one aged 55 or older. This study highlights the importance of identifying those at the highest risk for increased grief-related symptomology.
This article is based on a reflective first-person narrative of living with vulvodynia, and the findings from a master's study, titled “My genitals make me inadequate”—A phenomenological hermeneutic study about vulvodynia based on body, meaning and lived experience . One of the main findings in this study about the “lived experience” of living with vulvodynia was the sense of being “bereft of one's sexuality.” The narratives centered on disenfranchised grief and feelings of loss, loneliness, stigma, guilt and shame. Vulvodynia is described as a chronic genital pain condition without a clear identifiable cause. Provoked localized vulvodynia, is the most common type of vulvar pain in premenopausal women, affecting 7–13%. Experiences of vulvodynia are often discussed in terms of depression and anxiety, but rarely from a grief perspective. This article conceptualizes vulvodynia through the lens of loss and grief, integrating theories about the embodied and existential dimensions of sexuality. It argues that an increased “grief literacy” is essential to adequately address the lived experiences of those suffering from this condition.
