Non-death Losses Research Articles

The ongoing impact: A 4-wave longitudinal study on how loss and avoidance coping lead to long-term challenges after COVID

COVID-19 changed the world we live in. We need research to understand the challenges people are still experiencing. We used a longitudinal design to test the relationships among non-death loss, avoidance coping, and perceived COVID-19 impact before and after China’s dramatic zero-COVID policy reversal. We tracked 270 emerging adults who just graduated from college at four time-points from June 2022 to December 2023. Two waves were conducted before the end of zero-COVID policy; one wave was immediately after the policy ended (Dec. 2022); and one wave was one full year later. Non-death losses were consistently associated with increased perceived COVID-19 impact at later stages. This association remained consistent even one year after the end of zero-COVID policy. People tended to use more avoidance coping immediately after the policy transition, but it did not have longitudinal associations with perceived COVID-19 impact. Our findings suggest that non-death loss has a long-lasting psychological impact of COVID-19.

Do Mental Health Professionals Recognize Dementia Grief?

Abstract: Dementia grief can be challenging to detect because it is often disenfranchised. This study examined whether mental health professionals detect or overlook dementia grief. An online survey presented health professionals with a case vignette regarding the caregivers of people with dementia (PwD). Based on random assignment, the participants read a case description of a PwD who was deceased or still alive. We analyzed the responses of 381 participants. Significant group differences for the variables grief attribution, loss attribution, expected self-disenfranchisement, grief support/grief group recommendation, and psychotherapeutic/psychiatric counsel recommendation resulted. Even though professionals in this sample had continued grief education, loss and grief attribution in nondeath event losses were significantly lower, confirming that dementia providers disenfranchise dementia grief.

Grief over Non-Death Losses

Grief is often thought of as an emotional response to the death of someone we love. However, the term “grief” is also used when referring to losses of various other kinds, as with grief over illness, injury, unemployment, diminished abilities, relationship breakups, or loss of significant personal possessions. Complementing such uses, we propose that grief over a bereavement and other experiences of loss share a common phenomenological structure: one experiences the loss of certain possibilities that were integral to—and perhaps central to—the unfolding structure of one’s life. Grief can thus be conceived of in a broad but still univocal way. To develop this position, we focus on the example of grief over involuntary childlessness, where lack of a concrete, historical object of emotion serves to make explicit the way in which grief concerns future possibilities. We go on to suggest that the phenomenological complexity, diversity, and prevalence of grief are obscured when approached via an abstract, simplified conception of bereavement.

Grief and the non-death losses of Covid-19

Articles in the popular media and testimonies collected in empirical work suggest that many people who have not been bereaved have nevertheless grieved over pandemic-related losses of various kinds. There is a philosophical question about whether any experience of a non-death loss ought to count as grief, hinging upon how the object of grief is construed. However, even if one accepts that certain significant non-death losses are possible targets of grief, many reported cases of putative pandemic-related grief may appear less plausible. For instance, it might be argued that many of these losses are temporary or minor and therefore unlikely to be grieved, and that the associated experiences are phenomenologically dissimilar to grief. In this article, as well as discussing the more general question about the coherence of the idea of non-bereavement grief, we address these obstacles to taking reports of pandemic non-bereavement grief to be literal and true. In particular, we argue that some may have experienced grief over even apparently minor losses during the pandemic. This is generally so, we suggest, only insofar as experiences of such losses form part of an overarching grief process directed at some broader significant loss. Thus, we cast light on both the nature of non-bereavement grief and the kinds of disruption and loss experienced during the pandemic.

Living with Parkinson's disease: A qualitative study of spousal perspectives.

Research has demonstrated that Parkinson's disease can have adverse psychological effects on caregivers. Very few studies have focused on the experiences of spouses who are not primary caregivers or who do not identify as primary caregivers. The aim of this study was to explore the experiences of spouses who are not primary caregivers or do not identify as primary caregivers. Twelve Israeli women, spouses of men with Parkinson's disease, were interviewed using a semi-structured in-depth approach. Thematic analysis revealed five themes: before diagnosis, at diagnosis, after diagnosis, interpersonal ways of coping, and intrapersonal ways of coping. A dynamic of oscillation between confronting and avoiding losses was indicated. Non-death losses were mostly unacknowledged among spouses' social circles. Results were interpreted in the context of grieving processes after diagnosis. Findings suggest a need for psychological interventions aimed at creating safe spaces for spouses to engage in a grieving process after diagnosis.

Prognosticating COVID Therapeutic Responses: Ambiguous Loss and Disenfranchised Grief.

Conventionally, therapeutic assessments, interventions, and treatments have focussed on death-related “losses and grief” responses. It is purported that the COVID-19 aftermath has resulted in losses that cannot always be encapsulated using this method. In search of reasoning, models and theories that explain the sweeping mass destruction that COVID-19 has caused, key concepts arise in terms of how we should deal with losses and in turn support patients in the health and social care sector, (notwithstanding formal therapeutic services). There is a crucial need to embrace ambiguous loss and disenfranchised grief into everyday terminology and be acquainted with these issues, thereby adapting how services/clinicians now embrace loss and grief work. Integral to this process is to recognize that there has been a disproportionate impact on Black and minority ethnic communities, and we now need to ensure services are “seriously culturally competent.” Primary Care services/IAPT/health and social care/voluntary sector are all likely to be at the forefront of delivering these interventions and are already established gatekeepers. So, this article discusses the prognostic therapeutic response to non-death related losses and grief, not restricted to the formal echelons of therapeutic provision.

Availability and Quality of Grief and Bereavement Care in Pediatric Intensive Care Units Around the World, Opportunities for Improvement.

Pediatric Intensive Care Units (PICUs) provide multidisciplinary care to critically ill children and their families. Grief is present throughout the trajectory of illness and can peak around the time of death or non-death losses. The objective of this study was to assess how PICUs around the world implement grief and bereavement care (GBC) as part of an integrated model of care. This is a multicenter cross-sectional, prospective survey study. Questionnaires with multiple-choice and open-ended questions focusing on unit infrastructure, personnel, policies, limited patient data, and practices related to GBC for families and health care professionals (HCPs) were completed by on-site researchers, who were HCPs on the direct care of patients. PICU fulfillment of GBC goals was evaluated using a custom scoring based on indicators developed by the Initiative for Pediatric Palliative Care (IPPC). We compared average total and individual items fulfillment scores according to the respective country's World Bank income. Patient characteristics and details of unit infrastructure were also evaluated as potential predictors of total GBC fulfillment scores. Statistical analysis included multilevel generalized linear models (GLM) with a Gaussian distribution adjusted by child age/gender and clustering by center, using high income countries (HICs) as the comparative reference. Additionally, we applied principals of content analysis to analyze and summarize open-ended answers to contextualize qualitative data. The study included 34 PICUs from 18 countries: high-income countries (HICs): 32.4%, upper middle-income countries (UMICs): 44.1%, low middle-income and low-income countries (LMI/LICs): 23.5%. All groups reported some compliance with GBC goals; no group reported perfect fulfillment. We found statistically significant differences in GBC fulfillment scores between HICs and UMICs (specifically, HCP grief support), and between HICs and LMICs (specifically, family grief support and HCP grief support). PICUs world-wide provide some GBC, independent of income, but barriers include lack of financial support, time, and training, overall unit culture, presence of a palliative care consultation service, and varying cultural perceptions of child death. Disparities in GBC for families and HCPs exist and were related to the native countries' income level. Identifying barriers to support families and HCPs, can lead to opportunities of improving GBC in PICUs world-wide.

College Student Experiences of Grief and Loss Amid the COVID-19 Global Pandemic.

This study examined types of and reactions to loss experienced by a sample of 162 undergraduate and graduate students in the United States amid the COVID-19 global pandemic. Results indicated students reported an average of 6.33 losses with loss of normalcy being the most prominent. The number of losses experienced was a significant predictor of loss of control and avoidance. A significant positive relationship was revealed between spirituality and positive reappraisal whereas a significant negative correlation was identified between spirituality and loss of control and avoidance. Age was also negatively associated with expressions of avoidance and loss of control. Finally, students who attended faith-based institutions reported higher levels of positive reappraisal and lower levels of loss of control. Results suggest the need for educators and mental health practitioners to assess non-death losses among college students and provide supportive interventions aimed at promoting psychosocial-spiritual coping and resilience during and following a pandemic.

Current Grief Support in Pediatric Palliative Care.

Grief support changes as more is learned from current grief theory and research. The authors provide a comprehensive overview of current grief support as it relates to Pediatric Palliative Care (PPC). The following aspects of grief are addressed: (1) anticipatory grief: the nondeath losses that occur with a complex and chronic illness, as well as the time leading up to death; (2) grief around the time of death: the intense and sacred experience of companioning with a dying child; (3) grief after death: supporting bereavement and mourning through programing and other methods; (4) innovative approaches: the future of grief support. The contents of this article are meant to support and educate programs currently providing grief services and those aiming to begin the meaningful work of grief support.

Non-death Loss: Grieving for the Loss of Familiar Place and for Precious Time and Associated Opportunities

Grieving for the non-death losses of one’s place and all that is familiar and the loss of precious time and the associated opportunities go largely unnoticed in society as well as in the profession’s literature and practice. Too often, people are left on their own to grieve and suffer from these types of non-death losses. In this article, the authors attempt to broaden the conception of grief by discussing and illustrating two types of more ambiguous non-death losses (Boss, J Fam Theory Rev, 8:269–286, 2016). Each of these types of non-death losses is examined from a theoretical, empirical and clinical perspective.

“No One Acknowledged My Loss and Hurt”: Non-death Loss, Grief, and Trauma in Foster Care

How do youth in foster care experience non-death loss? Drawing upon the theories of ambiguous loss, symbolic loss, and disenfranchised grief, this applied theoretical article integrates research findings to address how youth experience loss, grief, and trauma in foster care. Youth’s reports illustrate experiences of non-death loss, the impact of non-death loss on psychological and emotional well-being, and how non-death losses are disenfranchised and enfranchised within the foster care system. Recommendations are made that child welfare agencies consider how their practices and policies can be enhanced to meet the needs of grieving youth in foster care.

The Birdhouse Project as Experiential Learning Tool for College Students and Beyond

This study details the use of a project-based experiential exercise in a 4-year university Sociology of Death and Dying classroom setting in a large public institution in the United States. The Birdhouse Project was implemented with 436 student participants from 15 senior-level Death and Dying classes across six regular semesters over a 3-year span. Findings clearly indicate the efficacy of the project in both educational and clinical settings for encouraging growth in knowledge building, insight or compassion building, and skills building. Additionally, through implementation of the project, participants experienced improved articulation of bereavement issues around both death and nondeath losses.

Staying with the Metaphor: Applying Reality Therapy’s Use of Metaphors to Grief Counseling

ABSTRACTFacilitating loss adaptation and meaning making are important but difficult tasks in grief counseling. In this article, we propose the reality theory approach of staying with the client’s metaphor to address these concerns. Because metaphors are often ubiquitous in client speech, this article details instructions to use to stay with those metaphors and draw out the potential therein for further loss adaptation and meaning making for grieving clients. Staying with the metaphor offers grieving clients opportunities to deepen self-awareness and strengthen connections with loved ones. We offer case examples that make use of client- and counselor-generated metaphors for both death-related and nondeath losses that appear in grief counseling.

Death and seeking alternative therapy largely accounted for lost to follow-up of patients on ART in northwest Ethiopia: a community tracking survey.

BackgroundAntiretroviral treatment programs in sub-Saharan African countries are highly affected by LTF. Tracking patients lost to follow-up and understanding their status is essential to maintain program quality and to develop targeted interventions to prevent LTF. We aimed to determine the outcome and factors associated with LTF.MethodA lost to follow-up community tracking survey was conducted to determine the reasons, outcomes and factors associated with LTF at the University of Gondar Hospital, northwest Ethiopia. All patients were tracked at home to ascertain outcome status for lost to follow-up (death and non-death losses).ResultOut of the 551 patients LTF, 486 (88.20%) were successfully tracked. Death was the most common reason accounted for 233 (47.94%) of the lost to follow-up. Reasons for non-deaths losses include: stopped antiretroviral treatment due to different reasons, 135(53.36%), and relocation to another antiretroviral treatment program by self- transfer, 118(46.64%). The rate of mortality in the first six months was 72.12 per 100 person-years (95% CI: 61.80–84.24) but this sharply decreased after 12 months to 7.92 per 100 person-years (95% CI: 4.44–14.41). Baseline clinical characteristics were strongly associated with mortality.ConclusionDeath accounts for about half of the loss to follow up. Most deaths occur in the first six months of loss. Seeking alternative therapy is another major reason for loss to follow up. Early tracking mechanisms are necessary to prevent death.

Reactions to Loss Scale: Assessing Grief in College Students

The most common tools for assessing grief and loss focus on death-related loss. The Reactions to Loss Scale (RTL) broadens the scope of bereavement measures to include reactions to non-death losses. The population targeted by this measure, emerging adults (college students), commonly experiences a myriad of both death-related and non-death losses. The validity of the Reactions to Loss Scale (RTL) is investigated in 4 studies. Factor analysis of the 65-item RTL (N=564) identified 3 subscales, each demonstrating good reliability. In the first 3 studies, the RTL was found to be related to depression, anxiety, negative affect, and positive measures of satisfaction with life, happiness, and positive affect. In Study 4, prospective data was utilized to evaluate predictive validity. These data found that the RTL was predictive of longitudinal changes in negative affect, perceived social support, satisfaction with life, and positive feelings about the specific loss.

Intervention in a Shared Traumatic Reality: A New Challenge for Social Workers

Rachel Dekel is an Associate Professor at the Louis and Gabi Weisfeld School of Social Work at Bar-Ilan University in Israel. She is particularly interested in the study of individuals who have experienced secondary exposure to traumatic events. Her research has examined spouses of former veterans and prisoners of war, children of fathers with PTSD and therapists who have treated victims of terrorism. In addition, Prof. Dekel is interested in exploring the consequences of direct exposure to traumatic events. Nehami Baum, Ph.D., is a senior lecturer of the School of Social-Work at Bar Ilan University. She is a social worker with experience in both public and private practice. Her main areas of interest are: men’s way of mourning and non-death related losses, and situations that mental health professionals confront in their practice. More specifically, in the last few years she has been studying professionals’ private experiences (e.g., pregnancy) and environmental conditions (e.g., terror, war and political conflict) on their professional functioning.

Determinants of Mortality and Nondeath Losses from an Antiretroviral Treatment Service in South Africa: Implications for Program Evaluation

The scale-up of antiretroviral treatment (ART) services in resource-limited settings requires a programmatic model to deliver care to large numbers of people. Understanding the determinants of key outcome measures--including death and nondeath losses--would assist in program evaluation and development. Between September 2002 and August 2005, all in-program (pretreatment and on-treatment) deaths and nondeath losses were prospectively ascertained among treatment-naive adults (n=1235) who were enrolled in a community-based ART program in South Africa. At study censorship, 927 patients had initiated ART after a median of 34 days after enrollment in the program. One hundred twenty-one (9.8%) patients died. Mortality rates were 33.3 (95% CI, 25.5-43.0), 19.1 (95% CI, 14.4-25.2), and 2.9 (95% CI, 1.8-4.8) deaths/100 person-years in the pretreatment interval, during the first 4 months of ART (early deaths), and after 4 months of ART (late deaths), respectively. Pretreatment and early treatment deaths together accounted for 87% of deaths, and were independently associated with advanced immunodeficiency at enrollment. Late deaths were comparatively few and were only associated with the response to ART at 4 months. Nondeath program losses (loss to follow-up, 2.3%; transfer-out, 1.9%; relocation, 0.7%) were not associated with immune status and were evenly distributed during the study period. Loss to follow-up and late mortality rates were low, reflecting good cohort retention and treatment response. However, the extremely high pretreatment and early mortality rates indicate that patients are enrolling in ART programs with far too advanced immunodeficiency. Causes of late access to the ART program, such as delays in health care access, health system delays, or inappropriate treatment criteria, need to be addressed.

Assessing Loss Reactions among Older Adults: Strategies to Evaluate the Impact of September 11, 2001

As a result of the events of September 11, 2001, older adults have experienced a multitude of death-related and non-death losses. Mental health counselors who interact with older adults have a crucial role in identifying individuals who may be at risk for experiencing a subsequent, temporary, upsurge of grief. Following a review of basic concepts and underlying philosophies that can be utilized to inform work with bereaved older adults, interviewing strategies and standardized measures available for use with older adults experiencing trauma and grief are described. Then using Corr's (2003) task-based approach as a framework, strategies for identification of need and intervention are presented.

Grief reactions of mothers of adolescents and young adults with traumatic brain injury

One hundred and two mothers of adolescents and young adults with traumatic brain injury completed a modified Grief Experience Inventory (GEI) (Sanders, Mauger, & Strong, 1985) and rated their child's functioning on a modified Neurobehavioral Rating Scale (NRS) (Levin et al., 1987). More severe grief was reported by mothers who rated their children as having poor neurobehavioral functioning and by mothers of young adult rather than adolescent patients. The guilt component of grief varied significantly across the 3-year post-injury period measured in the study. Historical comparisons of these respondents with other bereaved populations showed that mothers of adolescent and young adults with head injury reported more intense grief than parents who had experienced other significant non-death losses.

Grief reactions of mothers of adolescents and young adults with traumatic brain injury

One hundred and two mothers of adolescents and young adults with traumatic brain injury completed a modified Grief Experience Inventory (GEI) (Sanders, Mauger, & Strong, 1985) and rated their child's functioning on a modified Neurobehavioral Rating Scale (NRS) (Levin et al., 1987). More severe grief was reported by mothers who rated their children as having poor neurobehavioral functioning and by mothers of young adult rather than adolescent patients. The guilt component of grief varied significantly across the 3-year post-injury period measured in the study. Historical comparisons of these respondents with other bereaved populations showed that mothers of adolescent and young adults with head injury reported more intense grief than parents who had experienced other significant non-death losses.