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Disenfranchised Grief
Abstract
attempts to integrate the literature on such [unacknowledged] losses in order to explore the phenomenon of disenfranchised grief / the very nature of this type of grief exacerbates the problems of grief, but the usual sources of support may not be available or helpful
society as a whole may not perceive that the loss of a past relationship could or should cause any reaction / the loss itself is not socially defined as significant / characteristics of the bereaved in effect disenfranchise their grief / mentally disabled / right to mourn / interpersonal, psychological, social, physiological [variables] (PsycINFO Database Record (c) 2012 APA, all rights reserved)
... Grief did not garner significant support from close or distant social circles. These experiences of support, or lack thereof, and views of the role of social support reflect aspects of disenfranchised grief (Doka, 1999). The coping axis and its corresponding themes may be interpreted in the context of disenfranchised grief. ...
... The coping axis and its corresponding themes may be interpreted in the context of disenfranchised grief. This type of grief is experienced by those who are subjected to loss that is not openly acknowledged, publicly mourned, or socially supported (Doka, 1999). Its effects are felt in social as well as psychological aspects. ...
... A more cognitive style may manifest in information seeking and case managing, as it did among several participants. Society may view this kind of behavior as non-grief and invalidate it (Doka, 1999(Doka, , 2008. ...
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.
... Literature on the loss of a companion and assistance animals frequently acknowledges the concept of disenfranchised grief (Chur-Hansen, 2010;Huggard, 2014;Packman et al., 2014;Spain et al., 2019). Disenfranchised grief refers to grief that cannot be openly acknowledged due to social constraints by the person's social group or wider society (Doka, 1989;Huggard, 2014;Thomas, 2014). Such grief is particularly pronounced in individuals who have lost an animal as some in society consider animal-human relationships to be of lesser value in comparison to human relations; therefore, grief for such a loss is illegitimate and may even be ridiculed (S Cohen & Clark, 2019;Spain et al., 2019). ...
... The participants often reported they felt they weren't supported or others simply did not understand the loss they were experiencing. This can be further detrimental to veteran health as the social norms around grief or even the perceived responses of others to their grief, may cause the veteran to grieve in isolation and feel they are "not allowed" to show outward displays of mourning (Doka, 1989;Thomas, 2014). In the case of the death of a companion animal and an assistance animal, there are no socially accepted rituals or mechanisms to grieve or mourn the loss, which can lead to further social isolation (Doka, 1989;Spain et al., 2019;Stewart et al., 1989). ...
... This can be further detrimental to veteran health as the social norms around grief or even the perceived responses of others to their grief, may cause the veteran to grieve in isolation and feel they are "not allowed" to show outward displays of mourning (Doka, 1989;Thomas, 2014). In the case of the death of a companion animal and an assistance animal, there are no socially accepted rituals or mechanisms to grieve or mourn the loss, which can lead to further social isolation (Doka, 1989;Spain et al., 2019;Stewart et al., 1989). Disenfranchised grief also seems to be present in situations where the veterans in this study had to relinquish their PSD. ...
Canadian veterans with PTSD are increasingly accessing psychiatric service dogs as a complementary treatment for their symptoms. Due to the short life span of dogs, however, it is inevitable that these veterans will experience the loss of their PSD either through death, retirement, or relinquishment. This exploratory qualitative study shares the findings from interviews with four veterans who had experienced grief at the loss of a PSD. The themes that emerged suggest that participants experienced a grief cycle: building of a bond with their PSD, a grief response after the loss of their PSD, healing and coping, and a transitional stage when introducing a new PSD into their lives. Recommendations are made for health care professionals working with veterans with psychiatric service dogs and for service dog providers and organizations to better prepare and support their clients leading up to and after the loss of their service dog.
... In the event of a fatal overdose, stigma may also negatively impact the mourning processes of the bereaved. Doka's (1999) concept of "disenfranchised grief" is described as grief that often goes unacknowledged or is invalidated by social norms: ...
... It is important to present a more in-depth discussion of Doka's (1989Doka's ( , 1999 influential work. To summarize, Doka's interactionist theory is composed of several interrelated observations. ...
... Throughout these interactions and experiences, the bereaved receive various signals that their loved one was marginalized because of their substance use, sending the message that the loss experienced by the bereaved is less legitimate. This follows the logic of arguments outlined above that certain "normal" types of death are worthy of compassionate sentiments, while "bad deaths" receive less social support and empathy (Doka 1999;Seale and Van der Geest 2004). Research on stigma typically has focused on one stigmatized characteristic or examined stigma in a particular setting. ...
As the opioid epidemic has crashed through the American landscape, the immense loss of life has drawn attention to a host of issues related to the causes and consequences of this epidemic. However, limited focus has been given to those in mourning following the loss of a loved one to a fatal overdose. This study explores how stigma impacts the mourning and help-seeking of those bereaved by a drug overdose death. To explore this issue, thirty-five in-depth interviews were conducted with friends, family members, and partners of those who lost a loved one to an overdose. Qualitative analysis of survivors’ accounts reveals varying degrees of stigmatization that differs in terms of context. At the institutional level, survivors recalled experiencing stigma in the denial of treatment prior to their loved one’s death. Survivors also describe mistreatment by law enforcement. Most reported were stigmatizing experiences of alienation, blame, and isolation by family and friends. Perhaps most important are survivors’ accounts of help-seeking. Participation in drug death specific help-seeking (12-Step Fellowship and secular recovery support groups) is described as cultivating safe spaces that foster community and belonging. Survivors who serve in advocacy leadership roles and other support group roles describe a process of negotiating stigmatized bereavement through positive agentic experiences (e.g., acceptance through helping others). Other survivors who are less active in help-seeking activities describe varying degrees of unspoiling identity (e.g., support to share honestly about their loved one’s drug overdose death). The implications of these findings highlight both the importance of expanding access to survivor support groups in marginalized communities most impacted by the opioid epidemic and addressing their stigmatized grief.
... Kenneth Doka was first who formally suggest the notion of disenfranchised grief in 1989. He relates this notion to a situation where a loss is incurred that is not or cannot be openly acknowledged, publicly mourned, or socially supported (Doka, 1989). As Doka (2002) points out society's grieving norms define what losses and relationships are legitimately grieved. ...
... They, in turn, lead to complicated grief and its resulting disorders in the long run. A top grief theory and model, disenfranchised grief, coined by Doka (1989), supported and acknowledged these findings. Hopefully, this research will raise awareness about the grief experiences of the bereaved during the covid-19 pandemic. ...
The objective of the current study was to investigate the grief experiences of people affected by COVID-19. The study adopted a qualitative design of descriptive phenomenology. Fifteen adults who had lost a family member during the COVID-19 pandemic were selected as the sample through the purposive sampling method until theoretical saturation was achieved. Data was collected using semi-structured interviews and the Colaizzi analysis method. Six main themes (i.e., unexpressed grief, psychosomatic reactions, negative emotions, family problems, and social and occupational problems) were extracted. Data analysis showed that complex disenfranchised grief is the pervasive consequence of the COVID-19 experience. According to the findings, participants experienced disenfranchised grief during the loss of their loved ones due to the COVID-19 disease, which was a complex, painful experience accompanied by negative emotions and family, work, and social tensions. This grief is accompanied by more severe and prolonged symptoms, making it difficult for the bereaved to return to normal life. In unexpressed grieving, there are intense feelings of grief, pain, separation, despair, emptiness, low self-esteem, bitterness, or longing for the presence of the deceased. This grief originated from the conditions of quarantine and physical distance on the one hand, which required the control of the outbreak of the COVID-19 disease, and on the other hand, the cultural-religious context of the Iranian people.
... Rituals are a means for the bereaved to express strong emotions, and their repetitive nature reduces feelings of anxiety (Myerhoff 1984). Thus, the lack of opportunities to engage in preexisting mourning practices and rituals adversely affects one's psychological state (Loewenthal 2006;O'Rourke et al. 2011), makes the grieving process more challenging (Giamattey et al. 2022) and possibly disenfranchises one's grief (Doka 1999). But this in no way implies that the bereaved are completely incapacitated in dealing with their loss. ...
... The varied attempts of the interviewees to modify prepandemic mourning rituals or come up with newer forms of digital mourning practices may be seen as their way of "enfranchising" and "uncompounding" their grief, which was characterized earlier as "disenfranchised, " unrecognized, and not socially supported (Doka 1999). According to Doka (2018), disenfranchised grievers need strong support, open recognition, empathy, and the opportunity to engage in ritual-prerequisites that were difficult to achieve during the COVID-19 lockdown. ...
The Coronavirus disease (COVID-19) pandemic claimed thousands of lives in the Philippines in 2020. Due to the extended lockdowns, COVID-19 health protocols, and social restrictions, Filipinos were prevented from engaging in prepandemic mourning practices and rituals, leading to the disenfranchisment and compounding of their grief. This paper examines the stories of grief and mourning of Filipinos during the first eight months of the COVID-19 pandemic. Through online storytelling sessions, it presents and chronicles the ways that Filipinos have inventively and bravely adapted to the restrictions and the lack of opportunities to come together and mourn. These include the use of various technologies to come up with modified versions of traditional rituals, and the appropriation of Facebook and its affordances, turning it into a site of mourning, commemoration, and remembrance. These attempts by bereaved Filipinos to reinvent prepandemic mourning practices and develop digital mourning practices on Facebook may be seen as their effort to “enfranchise” their grief amid a highly constricting climate.
... These losses are also anticipatory due to uncertainty of when and if the pandemic will end before more losses occur. Lastly, losses can be disenfranchised as a result of upwards or downwards comparison or lack of acknowledgment (Doka, 1999). The more people feel delegitimized or guilty about their loss, the less likely people are to seek support from others (Scheinfeld et al., 2021b). ...
... This study also supports previous literature on grief, including death and dying (Bonanno, Wortman, & Nesse, 2004;Pangborn, 2019), job loss (Beck, 2016;Buzzanell & Turner, 2012), and compounded losses (Scheinfeld et al., 2021a). Themes consistent in grief literature were present across the sample, such as disenfranchisement (Doka, 1999), memorable messages (Lucas & Buzzanell, 2012), and storytelling (Koenig Kellas & Trees, 2006). Participants attempted to uphold traditional mourning rituals online in an attempt to craft normalcy, utilized humor in an attempt to apply alternative ways of thinking (i.e., Booth-Butterfield, Wanzer, Weil, & Krezmein, 2014), foregrounded productive action while legitimizing negative feelings (as consistent with Stroebe & Schut's, 1999 dual process model of bereavement), relied on communication networks for validation and support (i.e., Jakoby, 2014), and affirmed identity in the wake of disenfranchisement (i.e., Barney & Yoshimura, 2020). ...
Losses during the COVID-19 pandemic presented people with a unique type of compounded grief. This study explores how individuals foster resilience in coping with COVID-19-related losses by investigating two research questions. Open-ended survey responses were coded using the Communication Theory of Resilience (CTR) framework, revealing how individuals enact certain resilience processes and how interactions contribute to resilience efforts. Findings demonstrate how interactions that supported resilience processes were generally perceived as helpful, while interactions that conflicted with resilience processes were considered harmful. The study provides ongoing support for the CTR framework and resilience scholarship.
... Two additional frameworks and concepts which have been applied from general grief research into ecological grief research are disenfranchised grief and ambiguous loss [19,43]. Disenfranchised grief refers to situations where other people and social norms do not support talking about a certain grief, because that grief is linked with too difficult or even forbidden issues in the social group [125]. Ecological grief and climate grief have often been these kinds of griefs, because of political disputes and psychological difficulty in facing them [19,57]. ...
... ( [84], pp. [124][125]. ...
As the ecological crisis grows more intense, people experience many forms of eco-anxiety and ecological grief. This article explores the broad process of encountering eco-anxiety and ecological grief, and engages in the constructive task of building a new model of that process. Eco-anxiety and grief are here seen as fundamentally healthy reactions to threats and loss, and only the strongest forms of them are seen as problems. The aim is to help researchers, various professionals and the general public by providing a model which is (a) simple enough but (b) more nuanced than stage models which may give a false impression of linearity. The article uses an interdisciplinary method. The proposed new model includes both chronological and thematic aspects. The early phases of Unknowing and Semi-consciousness are followed potentially by some kind of Awakening and various kinds of Shock and possible trauma. A major feature of the model is the following complex phase of Coping and Changing, which is framed as consisting of three major dimensions: Action (pro-environmental behavior of many kinds), Grieving (including other emotional engagement), and Distancing (including both self-care and problematic disavowal). The model predicts that if there is trouble in any of these three dimensions, adjusting will be more difficult. The model thus helps in seeing, e.g., the importance of self-care for coping. The possibility of stronger eco-anxiety and/or eco-depression is always present, including the danger of burnout. The ethical and psychological aim is called Adjustment and Transformation, which includes elements of, e.g., meaning-finding and acceptance. The need for Coping and Changing continues, but there is more awareness and flexibility in a metaphase of Living with the Ecological Crisis, where the titles and subtitles of the three dimensions of coping are switched.
... The recognition of continuing bonds between the deceased and those left behind progresses in this way (Despret, 2015;Klass et al., 1996;Klass & Steffen, 2018). Despite this, it is not commonly accepted in the contexts of everyday life that the bereaved must obtain full recognition of their experience of suffering (Doka, 1989;Walter, 1991). ...
... Social media users might feel embarrassed or irritated because of their unexpected encounters with death and the deceased or after seeing the grief of others (Brubaker et al., 2013;Pennington, 2013;Walter, 2015). Disenfranchised loss in offline relationships (Doka, 1989) can remain disenfranchised online or obtain acknowledgment only in some social contexts or just for some subjects (Christensen et al., 2017;Döveling et al., 2018;Walter et al., 2012). An intense online boundary work may be necessary to protect the stigmatized bereaved also in closed groups on Facebook (Yeshua-Katz & Hård af Segerstad, 2020). ...
Studies on death and digital media all agree that social media have changed how we mourn. However, they also highlight a considerable resistance to using social media in grieving. This article explores these resistances in greater depth based on a national research project on the Italian population (400 in-depth interviews and a representative survey) that includes non-users in the research into online death practices. Our theoretical framework is the paradigm of media and information and communications technologies (ICTs) domestication in everyday life and the study of the mediation of death from a socio-constructivist and non-platform/media-centric perspective. The article focuses on the findings of the interviews. Our research questions are as follows: What are the reasons for refusing or resisting social media use when mourning? Which type of social media domestication characterizes Italian users? How has social media changed the way we mourn? Online grieving emerges as a profitable area to study the resistance to and domestication of social media in everyday life. Social media are accepted differently in the various stages of the loss process. The most ritualized practices, like death announcements and condolences, are relatively approved. Instead, displays of grief online and, especially, the interaction with the digital remains of the dead are controversial. Social media have enhanced the everyday public visibility of death and bereavement and the public presence of the dead. However, social media have neither triggered a significant expansion of the enfranchisement of public displays of grief nor of continuing bonds online - not even in Italy.
... Although literature has consistently documented the negative impact of this sort of experience on the parents and the family, it is still a sorrow largely unrecognized also by healthcare providers. 4 As most phenomenological studies demonstrate, there are significant gaps in the psychosocial components of miscarriage and stillborn care, including a lack of clarity in communication about the loss and next steps, a lack of empathy, an invalidation of grief and a failure to attend to emotional needs. 4,5 Since healthcare providers are most often the patient's first point of contact as they experience the loss, it is imperative to meet their needs more adequately. ...
... 4 As most phenomenological studies demonstrate, there are significant gaps in the psychosocial components of miscarriage and stillborn care, including a lack of clarity in communication about the loss and next steps, a lack of empathy, an invalidation of grief and a failure to attend to emotional needs. 4,5 Since healthcare providers are most often the patient's first point of contact as they experience the loss, it is imperative to meet their needs more adequately. The authors propose a set of measures aimed at improving support, including (1) to promote healthcare providers' education regarding communication skills and delivery of bad news; (2) to provide parents with adequate information; (3) to avoid placing the bereaved in the maternity area as if they were parents of healthy babies; (4) to legitimize the loss, make time to say goodbye and provide access to mourning rituals if desired; (5) to convey empathy and be sensible to spiritual and cultural beliefs; (6) to identify risk factors for pathological grief reactions, such as anxiety and depressive disorders or post -traumatic stress, providing access to mental health services when appropriate and (7) to implement mutual--help groups for bereaved parents. ...
... The grief experienced by Third Culture Kids has characteristics of disenfranchised grief (Doka, 2002;Gilbert, 2008;Schaetti, 2002). According to Doka (2002), disenfranchised grief most commonly occurs when; (a) the relationship between the griever and that which has been lost is not socially recognized; (b) the loss itself is not socially recognized or is hidden from others; (c) the griever is not socially recognized; (d) circumstances of the loss contribute to stigma and negative judgment by others; and/or (e) the ways in which individuals grieve are not considered socially acceptable. ...
... The grief experienced by Third Culture Kids has characteristics of disenfranchised grief (Doka, 2002;Gilbert, 2008;Schaetti, 2002). According to Doka (2002), disenfranchised grief most commonly occurs when; (a) the relationship between the griever and that which has been lost is not socially recognized; (b) the loss itself is not socially recognized or is hidden from others; (c) the griever is not socially recognized; (d) circumstances of the loss contribute to stigma and negative judgment by others; and/or (e) the ways in which individuals grieve are not considered socially acceptable. Gilbert (2008) suggests that most of the losses Third Culture Kids experience may not be taken seriously or may be invisible to the adults in the child's life, thus increasing the risk that the Third Culture Kid's grief will not be understood and treated with the respect it deserves. ...
Arising from increasing globalization, growing numbers of families may find themselves relocating internationally because of work, while children in these families, often referred to as Third Culture Kids, may find themselves grieving for family, friends or possessions left behind. Research suggests that what Doka (2002) describes as disenfranchised grief may influence how such students perceive their experience with school transition programs. This article is part of a larger, ongoing study on Third Culture Kids and their experience with transition programs. Schools are increasingly recognising that supporting Third Culture Kids is essential to ensuring student transitions are successful, while continuing to develop strategies to guarantee the positivity of the student transition experience. International schools also need to consider and include strategies for specifically addressing disenfranchised grief in the Third Culture Kid transition programs. Academic research, as opposed to anecdotal evidence, is needed to better understand how Third Culture Kids experience grief during their transition and how they can best be supported by the school. This article examines the current research around several existing grief models, and how they potentially relate to Third Culture Kids and transition programs. The article is a position paper that presents a call for further research relating to Third Culture Kids through the theoretical lens of grief and loss, in order to provide education professionals with resources that can best support Third Culture Kids on their educational journey.
... Colloquially understood to be loss by death, experiences of grief extend further, encompassing "[deprivation] of something or someone" and "distress caused by or as if by bereavement" (American Psychological Association, 2023). However, non-death losses, like loss of ability from illness, are not always recognized, resulting in these grief processes being disenfranchised (Doka, 1999;Thompson & Doka, 2017). These disenfranchised grief experiences are marginalized by ideological discourses surrounding, sanctioning, and narrowing experiences of grief, defining what acceptable grief responses look like (Droser & Seurer, 2022). ...
... Therefore, miscarriages, stillbirths, or neonatal deaths are included within the perinatal loss concept ( Berry, 2022 ). Despite advances in the science and quality of health care for pregnant women and newborns, perinatal losses are still relatively common and impact millions of women worldwide, although the exact prevalence not be openly acknowledged, expressed in public, or supported by their social network ( Doka, 1999 ;Fernández-Basanta et al., 2020a ). ...
Objective:
This study uses a meta-ethnography to synthesize qualitative research on the experiences of women during pregnancies after one or more perinatal losses.
Design:
This interpretive meta-ethnography followed the Noblit and Hare approach and the eMERGe Meta-ethnography Reporting Guidance. Manual searches and a comprehensive systematic search were conducted in Pubmed, Scopus, Cinahl, Web of Science, and Psycinfo. Eleven studies met the research objective and inclusion criteria.
Results:
After reciprocal and refutational translations, the metaphor "The rainbow in the storm" and the following three themes emerged: (i) Between ambivalent feelings; (ii) being careful in the new pregnancy; and (iii) leaning on others. CERQual assessment showed that the results are (highly) reasonable representations of the phenomenon of interest.
Conclusions:
Most women experienced their subsequent pregnancy with ambivalent feelings and needed to reduce expectations, continuously monitor the pregnancy's viability, and eliminate risky behavior to protect themselves. Understanding and recognition by others is needed and appreciated.
Implications for practice:
Nurses and midwives play a crucial role in subsequent pregnancies and need to establish a care communion and ethical care during their encounters with affected women whose specific needs need to be incorporated into the guidelines and training curricula of care professionals to equip them with the necessary gender and cultural competences.
... Lannen et al., 2008;Trevino et al., 2018), as well as increased utilization of healthcare resources (Lannen et al., 2008), are consequences of unresolved grief. It has been proposed that the experience of DG is a risk factor for delayed or precluded grief resolution and complicated grief (Corr, 1999;Doka, 1999) and, as such, this requires closer examination. It is possible that the experience of DG is related to activity, physical health, and mental well-being, but our measure, the WDG (St Clair, 2013), was not sensitive to this for CA grief. ...
Background: The number of older adults living with companion animals (pets) is increasing worldwide. While evidence revealing positive relationships between companion animals and healthy aging is well established, there is a dearth of research regarding companion animal death and subsequent human grieving. Some emerging research suggests that grief over companion animal death is often discounted or even unrecognized (disenfranchised) by others. The extent and consequences of disenfranchised grief (DG) are poorly understood. This study deepens our understanding of older adults’ experiences of DG in relation to companion animal death.
Methods: Participants from Alberta, Canada, were recruited through social media platforms to participate in an online questionnaire that collected demographic information and standardized measures of companion animal attachment, bereavement, and DG.
Results: The majority of the 98 participants were between 60 and 70 years of age, female, and living alone. Following their companion animal’s death, 38.1% identified a decrease in physical activity, and 47% reported that their emotional health had declined. One-third identified that they needed to be careful about who they disclosed their grief, as they were not certain that they would be supported. This group had a significantly greater likelihood of perceived decrease in physical health, and they were more likely to score higher on the Pet Bereavement Questionnaire.
Conclusions: This study adds weight to the emergent body of evidence highlighting companion animal bereavement as a legitimate and impactful health and well-being issue. The study found that DG is experienced by a sizable group of older adults following their companion animal’s death and that many participants perceived that socially legitimized recognition of loss and accompanying bereavement resources were lacking. These shortfalls contribute to health risks that negatively affect older adults’ ability to successfully age in the community.
... Theoretically, deteriorating parental mental health after having a child placed in OHC may be attributed to and contextualized through filial deprivation, which is the distress, grief or trauma that parents feel after separation from their child(ren) (Jenkins, 1969). Parents often do not find the right support and struggle to express their grief due to societal stigmas, increasing the risk of experiencing disenfranchised grief (Doka, 1999;McKegney, 2003;Schofield et al., 2011;Wissö et al., 2021). Symptoms of mental health disorders such as depression, suicidal tendencies, social dysfunction, sleep disorders, eating disorders, drug and alcohol abuse, have all shown to be reactions to grief (Stroebe et al., 2007). ...
Background: Literature on outcomes of children in out-of-home care (OHC) is extensive. However, less is known regarding associations of such placements with parental mental health disorders (MHD).
Objective: This study investigated changes in hospitalization rates due to MHD among parents, four years before and after placement of their child in OHC.
Participants and setting: We used data on 4067 members (Generation 1) of the RELINK53 cohort (individuals born and living in Sweden in 1953) and their 5373 children (Generation 2) in OHC.
Methods: Using random effects regression models, associations between OHC and MHD were examined separately for fathers and mothers. Nested models were tested exploring associations with parent and child/placement-related factors. Marginal effects were computed to assess mean rates of hospitalization annually.
Results: Overall, mothers had higher mean hospitalization rates than fathers. Compared to the year of placement, hospitalization rates were significantly lower in the four years before placement for mothers (9.9 %, 9.5 %, 10.5 %, 12.1 %, respectively) and fathers (5.9 %, 7.6 %, 8 %, 9.8 %, respectively). Mothers showed highest hospitalization rates at the year of placement (26.6 %), while fathers, one year after placement (13.4 %). Hospitalization rates declined significantly directly after placement among mothers, but an unclear and non-significant pattern of results was found among fathers.
Conclusions: Most parents have higher hospitalization rates at and directly after placement. Potential hypotheses underlying these findings are discussed, including psychosocial gender differences and opportunities to seek care as means of reunification. There is an urgency to develop strategies to better support these parents throughout the process.
... Relatives and friends attempt to isolate them from the traumatizing event; and most professionals focus on parental grief when a perinatal loss occurs (Davidson, 2018;Funk et al., 2018;Kempson & Murdock, 2010). The (usually benevolent) endeavours to protect the children from the traumatic experience by not relating the loss have an adverse impact as complicated grief may occur, threatening bereaved siblings' physical and psychological wellbeing (Boelen et al., 2020;Doka, 1999;Fernández-Alcántara et al., 2021;Kersting & Wagner, 2012). Symptoms may include impairments in daily functioning, isolation, identity disruption, sensing life as meaningless, and emotional problems that persist over the years (Boelen et al., 2020;Prigerson et al., 2021). ...
This study is an exploration on potential gender differences in sibling grief over perinatal loss. 30 adult siblings' recollections were analysed to identify possible differences along the instrumental-intuitive continuum. A statistical analysis (ANOVA) on word frequencies indicated that the intensity of the emotional experiences did not differ between men and women, as there were not any significant differences in the function words reflecting such contents. Women referred to third persons, the delivery process, and the act of naming their deceased siblings more frequently. A subsequent qualitative context analysis revealed that these third persons were mainly family members and hospital staff. Men were more specific in their recollections, mentioning exact names and other types of data related to the loss while women focused more on the emotional significance of the experience. Our results may contribute to the development of personalized interventions for families struggling with disenfranchised grief.
... For others, the death statistics meant a de-individuation of the deceased and led to the feeling that individual losses were not adequately acknowledged (Torrens-Burton et al., 2022). This facet of the theme aligns with the concept of disenfranchised grief (Doka, 1999). While grief researchers have speculated that disenfranchised grief may be a consequence of COVID-19 among the bereaved (Albuquerque et al., 2021;Stroebe & Schut, 2021), our results suggest that it has become an important topic in grief counselling. ...
Background: Due to its high death toll and measures to curb the pandemic, COVID-19 has affected grieving experiences and may contribute to risk factors for Prolonged Grief Disorder (PGD). Persons at risk for PGD often seek support from grief counselling.
Objective: To explore whether pandemic-associated risk factors have become more important topics in counselling in a mixed-method design.
Method: German grief counsellors (n = 93) rated whether pre-defined risk factors had become more important in grief counselling and indicated additional important themes in an open format.
Results: The counsellors indicated that all pre-defined risk factors had become more important, though differing significantly in their frequency. Most frequently endorsed risk factors were lack of social support, limited possibilities to accompany a dying loved one and absence of traditional grief rituals. Qualitative analysis identified three additional themes: the societal impact of the pandemic, its impact on bereavement support and health care, and a chance for personal growth.
Conclusions: The pandemic has affected bereavement experiences and grief counselling. Counsellors should monitor grief processes and specific risk factors to provide the best possible care for bereaved people when needed.
... Though disenfranchisement typically refers to the loss of one's right to vote (Merriam-Webster, 2022), it can be conceptualized more broadly as the deprivation of rights or privileges (Oxford Dictionary, 2022). Disenfranchised grief, for example, occurs when grief cannot be openly acknowledged or supported (e.g., the loss of a child to suicide), and thus, grievers lose "the right to grieve" without interference from others (Doka, 1999). Ray (1996a) conceptualized communicative disenfranchisement (CD) as the process through which "full privileges, rights, and power" is denied by "silencing . . . ...
Guided by the theory of communicative (dis)enfranchisement (TCD), this study analyzes 738 narratives describing negative (n ¼ 381) and positive (n ¼ 357) patient-provider interactions recounted by 399 female-identifying patients residing in 22 countries who are living with poorly understood chronic overlapping pain conditions (COPCs) such as fibromyalgia, vulvodynia, and endometriosis. Using thematic co-occurrence analysis (TCA), a novel method that builds on the identification of themes to map and visualize conceptual interrelationships, we identify nine enactments of (dis)enfranchising talk (DT) across three functions (discrediting, silencing, and stereotyping), four domains of consequences of DT (perceptual, emotional, physical, and material), and two patterns of co-occurrence between functions and consequences of DT (discrediting and physical, silencing and emotional). We illustrate how three MAXQDA software features can facilitate multi-coder TCA in large qualitative datasets. We offer theoretical implications and practical implications for communication researchers, patients, and medical providers toward improving difficult conversations concerning chronic pain.
... Une répondante qui (Souffron, 2015) pour permettre « d'inverser la mort en vie » (Thomas, 1985). Les rites funéraires permettent de séparer dignement le mort du monde des vivants et ont, en ce sens, une valeur « thérapeutique » (Thomas, 1985 Doka, 1999) permet de constater que toutes les morts n'ont pas forcément la même « valeur sociale », en distinguant la mort sociale de la mort physique (Zeghiche et al., 2020). Cette reconnaissance du deuil des proches est liée à la reconnaissance des morts. ...
... It seemed the academy had no space for grief. It was 'disenfranchised' (Doka, 1989). The whole student group appeared to lack the resources to emotionally reach out to their grieving peers. ...
... Isa illustrates this gap between her experience and that of those around her, a gap that makes her feel like she is living her grief apart from others. This feeling echoes Doka (2002)'s concept of disenfranchised grief used to describe bereavement experienced as socially reprimanded or not fully recognized and therefore never fully expressed. Isa feels like those in her landscape are trying to impose another way of experiencing grief on her. ...
La mort assistée ou aide médicale à mourir étant débattue et légalisée dans de plus en plus de pays et régions, notamment au Québec, le contexte du mourir en Occident semble en mouvance. Puisque la légalisation de cette pratique introduit un nouveau soin de fin de vie, de nombreuses personnes doivent désormais faire le choix entre mourir « naturellement » ou par aide médicale à mourir; un choix important susceptible de teinter le deuil des proches du défunt. La présente thèse porte un regard sur ces expériences de deuil en contexte d’aide médicale à mourir ou de mort naturelle accompagnée de soins palliatifs, et ce afin de déterminer les similitudes et différences dans le vécu des endeuillés, ainsi que le rôle des influences interpersonnelles (des relations avec autrui) dans ce même vécu.
Dans le premier article de la thèse, les expériences de deuil sont directement comparées par l’entremise d’une recherche à devis mixte. L’échantillon se compose de 60 endeuillés ayant rempli des questionnaires mesurant des symptômes de deuil (25 endeuillés en contexte d’aide médicale à mourir et 35 en contexte de mort naturelle), desquels 16 ont pris part à des entrevues de recherche individuelles. Les résultats quantitatifs mettent en lumière l’absence de différences statistiquement significatives entre les deux populations. Les conséquences des deux contextes de fin de vie sur l’intensité du deuil s’avèreraient donc similaires. De plus, les scores ne suggèrent pas de complications du deuil, ce qui peut sous-entendre que l’aide médicale à mourir et la mort naturelle ne contribuent pas de prime abord à rendre l’expérience du deuil davantage éprouvante. Les résultats qualitatifs sont nuancés : des « empreintes » négatives et positives (concernant la distance temporelle et le symbole du héros) peuvent colorer l’expérience dans les deux contextes. Bien que les morts naturelles et médicalement assistées semblent généralement toutes deux ne pas avoir un impact foncièrement négatif sur le processus de deuil, il demeure qu’elles peuvent produire des vécus plus difficiles lorsqu’en interaction avec d’autres facteurs de risques.
Dans le deuxième article, le concept du paysage relationnel est utilisé afin d’informer des conclusions à l’égard des facteurs interpersonnels à l’oeuvre dans le deuil. Les résultats présentés sont basés sur les 16 entrevues individuelles conduites auprès d’endeuillés et prennent la forme d’un modèle interprétatif permettant de décrire cinq types d’acteurs dans l’environnement de l’endeuillé (le défunt, les co-endeuillés, les aidants, les antagonistes et les personnages secondaires) et leurs manières « d’être avec » et de « laisser seul ». Le modèle comprend également quatre paysages vécus décrivant la manière dont le deuil se vit en lien avec l’environnement social (se sentir entouré, se sentir seul et loin, se sentir assiégé et se sentir investi d’un message). Le modèle interprétatif du paysage relationnel permet de s’attarder aux similitudes entre les défis relationnels du deuil par aide médicale à mourir et du deuil par mort naturelle, ainsi qu’au rôle d’autrui.
L’intégration des différents résultats nourrit des réflexions sur la création de sens, la compréhension de la souffrance en fin de vie, la temporalité, la culture, de même qu’à l’égard du poids relatif des circonstances d’une mort anticipée dans l’expérience du deuil des proches. L’accompagnement de la mort et du deuil en Occident à l’ère de la mort assistée est abordé sur la base des différents constats issus de la thèse. Ces réflexions permettent de songer à de futures avenues de recherche et de penser la clinique du deuil. /
With assisted dying being debated and legalized in more countries and regions, including Quebec, the context of death in the Western world seems to be in flux. Since the legalization of this practice introduces a new type of end-of-life care, many individuals must now choose between dying “naturally” or with medical assistance in dying, an important choice that may affect the grief of the deceased’s loved ones. This thesis examines grief experiences in the context of medical assistance in dying or natural death with palliative care to determine the similarities and differences in the experiences of the bereaved persons and the role of interpersonal influences (relationships with others) on bereavement.
In the thesis’ first article, grief experiences are directly compared through a mixed design research study. The sample consists of 60 bereaved persons who completed questionnaires measuring grief symptoms (25 bereaved individuals in the context of medical assistance in dying and 35 in the context of natural death), of whom 16 participated in individual research interviews. The quantitative results show no statistically significant differences between the two populations. The consequences of the two end-of-life contexts on grief intensity would therefore appear to be similar. Furthermore, the scores do not suggest grief complications, which may imply that medical assistance in dying and natural death do not prima facie contribute to a more distressing grief experience. Qualitative findings are nuanced: negative and positive “imprints” (regarding temporal distance and the hero symbol) may colour the grief experience in both contexts. Although both natural and medically assisted deaths generally appear not to have an inherently negative impact on the grieving process, they can still produce more difficult experiences when interacting with other risk factors.
In the second article, the relational landscape concept is used to inform conclusions regarding the influence of interpersonal factors at work during bereavement. The results presented are based on the 16 individual interviews conducted with bereaved persons and take the form of an interpretive model describing five types of actors in the bereaved individuals’ environment (the deceased, co-bereaved, caregivers, antagonists, and secondary characters) and their ways of “being with” and “leaving alone”. The model also includes four lived landscapes describing how grief is experienced relative to the social environment (to feel open and visited, to feel alone and far away, to feel besieged, and to feel invested with a message). The relational landscape interpretive model allows us to focus on the similarities between the relational challenges of bereavement after a medical assistance in dying and after a natural death. It also sheds light on the role of others on one’s grief experience.
The different results are integrated to provide insights into meaning-making, the understanding of suffering at the end of life, temporality, culture, and the relative weight of an anticipated death’s circumstances on the grief experience. End-of-life and grief support within Western societies in the era of assisted dying is also discussed based on the thesis’ various findings. These reflections allow us to consider future research avenues and to elaborate on grief intervention.
... Elective abortion can be considered a full-fledged trauma (Coleman, 2011), and the social stigmatization of this choice may cause disenfranchised grief (Doka, 1999), from which the risk of a specific complicated grief may arise, with all these feelings being amplified when women have a religious faith (Testoni et al., 2021). ...
Introduction. Elective abortion has always been considered taboo. The event can sometimes be experienced as traumatic, as the woman finds herself struggling against a range of emotions: fear, shame, ambivalence, and a sense of guilt. Multidisciplinary support is therefore fundamental to guide women during this complex phase, and social workers usually play a key role in the process. The present study aimed therefore to explore the experiences and perspectives of social workers who worked with women who decided to have abortions, focusing on the strongest and weakest aspects of their support process. Methodology. The study involved 10 social workers working in family counselling services in Italy. All of them were female, with a mean age of 47 years, and a mean of 16.7 years of experience in the field. The study followed a qualitative approach, based on semi-structured interviews that were studied following the principles of thematic analysis. Results. Three fundamental themes emerged from the data analysis: «Limits of the family counselling procedures and organization»; «The emotional dimension of elective abortion»; and «The issue of conscientious objectors». Discussion. The study highlighted how family counselling services are facing a crisis due to the lack of resources, personnel, and projects allowing for women’s proper sexual education and support. It also showed how the social worker’s role, which is fundamental, has instead been reduced, especially regarding elective abortions. Moreover, there was a lack of social and sanitary contexts integration and professional training that would provide the operators with specific skills and make them feel prepared to address such delicate situations. Conclusions. The need has emerged for a new, multidisciplinary perspective on the issue of voluntary interruption of pregnancy and social workers play a major role. However, the support system still presents many shortcomings for the women in need of assistance. The present study offers innovative and practical suggestions to properly fill these gaps.
... With childlessness, there is no grave, no anniversary, no recorded name, no special place, no memorial service, and no shared practices for narrating and making sense of the loss. 18 Partly for that reason, grief over childlessness is sometimes described in terms of "disenfranchised grief", a term introduced by Kenneth Doka to capture a variety of ways in which grief can be unacknowledged, misunderstood, or denied legitimacy (Doka, 1999;2002). 19 First-person accounts of involuntary childlessness identify several factors that contribute to disenfranchisement, including a lack of shared practices: ...
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. In this paper, we address the question of what, if anything, the relevant experiences have in common. We argue 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.
... In the context of the analysis, it is relevant to consider the relationship of the bereaved to the deceased when reflecting on the support made available (either legally or socially), as Doka's (1999) concept of disenfranchized grief outlined this type of grief is experienced by those who are subjected to loss that is not openly acknowledged, publicly mourned, or socially supported. Although the majority of the participants in this study might be considered immediate family members, the provision of legal support might be influenced by a country's or an authority's interpretation of the relationship. ...
Road traffic collisions (RTCs) are a global public health concern; however, research on the impact of bereavement on families remains limited. A critical realist approach was adopted to explore experiences of families suffering bereavement following RTCs, using interviews with 14 participants in the United Kingdom (UK) who have lost a family member. Three key themes were identified: (1) worsening mental health following bereavement, (2) negative impact of an RTC-related bereavement upon family members, (3) limited support following an RTC. Findings highlighted the requirement for appropriate support for bereaved families, and outlined significant flaws within the UK legal system, sentencing, and treatment of families.
... En este rubro, hay una gran cantidad de investigaciones realizadas desde los estudios críticos y la filosofía (Jerade, 2016) que parten del marco planteado por Butler (2006), para examinar los distintos modos en que el discurso estatal y el mediático regulan qué vidas son dignas de luto [mourning] (la expresión pública del duelo). Asimismo, la noción de duelo no-reconocido o duelo denegado [disenfranchised grief] propuesta por Doka (1999), ha tenido un papel importante dentro de los estudios críticos y sociales enfocados en el ámbito microsociológico. Se considera que el duelo de una persona es denegado cuando el objeto del duelo no se reconoce como legítimo, como la pérdida de un embarazo durante las primeras semanas o el dolor de alguien que pierde a una persona con quien mantenía una relación extramarital. ...
El periodo de duelo tras la pérdida de un ser querido presenta experiencias y actitudes inusuales que juegan un papel importante en la vida cognitiva de las personas dolientes; por ejemplo, la sensación momentánea de que la persona difunta se encuentra presente, así como creencias de carácter religioso o espiritual. Frecuentemente esto involucra el mantenimiento activo de un vínculo con la persona difunta a través de diversas prácticas en la vida cotidiana. Tanto los estados mentales relacionados con el duelo como las prácticas correspondientes al mantenimiento de vínculos tienen un valor epistémico, en la medida en que proveen un aporte a la funcionalidad del agente en su búsqueda por adquirir conocimiento, comprensión y otros bienes epistémicos. Esto tiene consecuencias éticas y sociales, ya que estos bienes epistémicos pueden ser destruidos o afectados por las intervenciones en el duelo, tanto clínicas como no-clínicas. A pesar de ello, esta dimensión no ha sido suficientemente reconocida por la literatura filosófica. Este trabajo busca motivar el interés por estudiar epistemológicamente el duelo de dos maneras. En primer lugar, ofreciendo una caracterización de los estados mentales asociados con el duelo en términos de estados subdoxásticos (como aliefs). Posteriormente, se muestra el papel que juegan dichos estados mentales en el espacio de affordances estructuradas en un nicho afectivo que permite el desempeño exitoso de la persona doliente en tanto agente epistémico. Con ello se busca proveer un marco de análisis que se pueda desarrollar y extender en futuros trabajos para estudiar los aspectos epistemológicos del duelo.
... In some cases, these effects have been compared to a life event such as the death of a parent (Chemtob et al. 1988). Clinicians can struggle with feelings of isolation and stigma, experiencing 'disenfranchised' grief, that is, grief felt not to be legitimate when compared to the experience of others who have been bereaved, such as family members (Doka 1999). There is frequently anxiety about being blamed by employers or professional bodies, with concern about losing professional registration (Shanley, O, unpubl. ...
In the UK, at least a quarter of suicides occurs in patients whilst under the care of mental health services. This study investigated the effects of such deaths on non‐medical mental health clinicians. An online survey was conducted within a single NHS mental health Trust to elicit both quantitative and qualitative responses from staff across a range of professions. The survey focused on personal and professional impacts and available support. Participants reported significant negative emotional and professional effects that were long‐lasting for some. These included mental health difficulties, loss of confidence regarding clinical responsibilities, and actual or contemplated career change. However, there was also some evidence of positive effects and professional growth. Support from colleagues and line managers is clearly important following deaths of patients by suicide. Clinicians' experiences of the support they had received in the workplace were polarized, suggesting that there is no single nor ideal approach that will meet everyone's needs. Participants made recommendations for the types of support that may be helpful. Most commonly, clinicians desired opportunities for focused reflection and support and help with the formal processes following the death. Sensitivity around how clinicians are notified about the death was highlighted as being particularly important. Conclusions are drawn as to how training institutions and employers can help staff to be better prepared for the potential occurrence of patient suicides and the formal processes that follow, with a view to mitigating risks of more serious harm to staff and hence indirectly to patients, and potential loss of highly trained clinicians to the workforce.
... Yet, consistent with ambiguous loss theory (Boss, 2006), partners whose dog had retired expressed higher levels of on-going worry than partners whose dogs had died. The retirement of a service dog places individuals at increased risk for additionally experiencing disenfranchised grief -a loss that involves limited social recognition and a lack of ritualized support (Doka, 1999). ...
This study describes the experiences of service dog partners (N=22) whose service dog had retired within the previous five years. The participants were service dog partners who participated in a larger quantitative study (N=56) and agreed to a follow up interview. Guided by bereavement and human-animal bond theories and prior research, researchers coded the interviews using directed content analysis to identify prevalent themes. Findings underscore that the retirement of a service dog is poorly understood by others, and often results in disenfranchised grief about this ambiguous loss. The retirement process is difficult and often partners struggled with the need to quickly acquire another service dog and the subsequent impact this had on their ability to grieve. These results suggest that, given the unique nature of service dogs and the relationship between dog and partner, it is important that service dog organizations, mental health counselors and veterinarians are aware of the challenges and losses associated with the retirement of a service dog and offer appropriate tools and support to their clients during this challenging time.
... There may be individual differences related to familiarity with grief which may be considered in future studies. Other conditions of personal grief, such as whether the grief is disenfranchised, where the relationship, loss, or griever is not socially recognized (Doka, 1999) may be important to consider as well. Future research should also consider the time since the personal loss to explore how the temporal stages of grief might impact the effectiveness of narrative interventions . ...
Themes of death and grief emerge in media entertainment in ways that are both poignant and humorous. In this experimental study, we extend research on eudaimonic narratives about death to consider those that are hedonic. Participants read a story about a woman giving a eulogy for her friend that was manipulated to be either poignant-focused or humor-focused, and answered questions about their responses to the story, feelings of connectedness with others, and death acceptance. The narrative conditions elicited similar levels of narrative engagement and appreciation, but the humor-focused narrative elicited more enjoyment than the poignant-focused narrative. Connectedness did not differ between conditions. However, the humor-focused narrative elicited more death acceptance when controlling for participants' personal loss acceptance and grief severity, and individual differences in the dark tetrad personality traits, trait depression, and religious upbringing. We tested these effects in an integrated path model and found that the model fit the data well and the narrative pathways explained variance in both death acceptance and connectedness. Our findings have implications for how death and grief are depicted in media entertainment: namely, that death is an inherently poignant topic and the addition of humorous elements in bereavement narratives may be especially effective in increasing death acceptance.
... This event and its aftermath include a sense of "ambiguous loss", which refers to ambivalent feelings when loved ones are no longer physically present, but remain psychologically present (Boss, 1991(Boss, , 2009. The loss may also be likened to Doka's (1989) construct of "disenfranchised grief", which he describes as "the grief that persons experience when they incur a loss that is not or cannot be openly acknowledged, publicly mourned, or socially supported" (p. 4). ...
This article explores the experiences of some Black South African families affected by international migration. Historically, emigration from South Africa has occurred in waves, and has been associated with specific political moments. Such migration has often been perceived as a predominantly “White phenomenon”, but recent trends reveal a more complex picture. Prior research on Black migration has focused primarily on internal labour migration, exilic migration and the “brain drain” phenomenon of medical professionals. So far, little research has been done on the impact of international outward migration on the Black family system. This article addresses this gap, drawing on a larger qualitative project exploring the impact of South African emigration on elderly family members staying behind. The findings highlight the significance of close relational ties in the Black South African family system. Familial separation through emigration brings feelings of loss and apprehension for the wellbeing of family members living abroad, including potential racism in destination countries. Migrants abroad highlighted the value of family and of maintaining a Black South African identity, despite separation from the country of origin and the extended family. Significantly, migration is often perceived as a temporary state, in contrast to White South African counterparts. Given increased international migration, the results shed light on the interplay between racial identity and emigration, and the impact of international migration by Black South Africans on family that they leave behind.
... There was no explicit acknowledgment of the harm caused by CW or FC nor assistance or compensation offered by these systems to assist them in healing. Families carried this disenfranchised griefunacknowledged pain and loss (Doka, 1999;Mitchell, 2018;Nixon et al., 2013), back into their homes. ...
There is no Family Court (FC) without families. However, historically and presently, families have not been centered in child welfare (CW) and family unification practices. This article aims to increase knowledge of parents’ experiences with CW and FC to illustrate how these institutions operate in the lives of the families they were built to serve. Data collected from in-depth interviews with parents ( n = 4) and parent advocates ( n = 6) illustrate how space, place, and time were recreated once parents engaged with CW and FC. These emergent findings show the FC’s replication of racial and social inequities among poor mothers of color and how the FC facilitated punitive pathways to reunification. This article ends with a call for institutional reforms to align FC practices with their stated purpose of supporting and centering families.
Research has given limited attention to family and friends bereaved by a drug-overdose death. To examine the ways in which stigma may uniquely impact the grieving processes of the bereaved, a thematic analysis of 35 semistructured in-depth interviews with family members and adult peers who lost a loved one to an overdose was conducted. Our findings demonstrate that the bereaved experience stigmatization after their loss. Specifically, respondents emphasized stigmatizing interactions with law enforcement, alienation from friends and family, a lack of social support, exchanges that enforced feeling rules, and being confronted by narratives of blame and individual choice as contributing to the degrees of stigmatization they experienced. Our findings highlight how bereavement becomes stigmatized to varying degrees through multiple interactions that have a compounding effect on mourners. We refer to this process as stigmatized bereavement, whereby the frequency of such interactions informs the degree of stigmatization the bereaved faces.
Background
Grief is a natural and individualized response to different losses, but if grief persists or becomes pathological, professional interventions are required. Grief and corresponding interventions have received increasing attention, as the related concepts have been incorporated into the DSM-5 and ICD-11. Therefore, we conducted a bibliometric analysis to explore the developments in the field of grief intervention research.Methods
Articles on grief interventions were systematically searched and screened from the Web of Science Core Collection. The retrieved data were analyzed and visualized using VOSviewer and Bibliometrix software for journals, authors, institutions, countries, references, and keywords.ResultsA total of 9,754 articles were included. The number of articles on grief interventions has increased significantly each year since 1990. Death Studies was the journal that published the most articles in this field. We identified 25,140 authors contributed to this research area and these authors were from 123 countries and 6,630 institutions. Boelen PA secured the first position in article production, Columbia University emerged as the most productive affiliation and the United States was the foremost leading in grief intervention research. The prevalent keywords utilized in this field comprised bereavement, grief, death, depression, and palliative care.Conclusion
The quantity of publications regarding grief interventions is increasing. Although most prior studies have focused on mortality, grief, and health, emerging themes such as COVID-19, grief among workers, and disfranchised grief have drawn increasing attention in recent years. Future studies may focus on investigating the complexities and challenges of grief, including its underlying mechanisms and impact on mental well-being.
After-death communication (ADC) is the phenomenon of perceiving spontaneous and direct contact by a deceased loved one. Evidence suggests that ADC is a widespread human experience, particularly for bereaved individuals. Many people who have ADCs report them to be comforting, suggesting therapeutic potential. However, many individuals in Western cultures choose not to disclose their ADCs to mental health providers, citing fears of pathologization, disenfranchisement due to gender expectations, negative ADC encounters, or minimization by clinicians. For others, ADCs are deeply personal and people may keep the experiences to themselves for fear that providers might explain the ADCs away by framing them in purely psychological terms. As such, there is a paucity of literature on how therapists should best approach the topic of ADC with clients. The following narrative review offers clinical interview and assessment strategies from theoretical papers and empirical studies to guide this process. Clinicians are encouraged to self-reflect on their natural inclinations around ADC, assess general psychological functioning, normalize and validate the ADC experience, assess client feelings and explanations, and inquire about spiritual beliefs. Clinicians can also help clients to explore the meaning and personal significance of their ADCs as well as clients’ perceived relationships with the deceased.
In Le jour où je n’étais pas là, Hélène Cixous looks back, forty years after the event, at the death of her first child, Georges: her son with Down’s syndrome whom she had abandoned to her own mother, Ève. Not only was the author-narrator absent at the time of her child’s death, but so was Ève, making the circumstances of this death a well-kept secret, to which it is impossible to testify with certainty. The author-narrator therefore undertakes to untangle the events preceding this sudden death in a text which—like the son, whose specter only returns to better flee—sets in motion a collapse of the trauma testimony. Indeed, dream and reality, lie and truthfulness, haunting and stream of consciousness overlap in a porous prose that will not quite shed light on the cause of the death. This article therefore intends to show how, in this work, traumatic mourning generates an affabulatory writing which confuses the reader and illustrates the failure of testimony, from which truth constantly escapes. After having defined the notion of traumatic loss, as well as the links uniting the experiences of mourning and trauma, the article’s author will analyze this affabulatory aesthetic through which Cixous implements her traumatic mourning, striving less to piece together the facts surrounding her baby’s death than to imagine, or even deny, what might have happened.
Communicable diseases are infections that are transmitted between individuals. Using COVID-19 and HIV/AIDS as models, this chapter explores themes common among communicable diseases, such as enacted, perceived, and internalized stigma. This chapter discusses ways in which perceptions of disease shape the experience of illness. Shame and fear of contracting the disease, ruptured self-image due to contagion, and available treatments impact interpersonal dynamics and family support from acute onset of the illness through terminal phases. The chapter explores opportunities for intervention, as well as strategies and evidence-based modalities social workers can use to guide clinical practice at all stages and phases of an illness to support patients and families through complex emotional and physical experiences.KeywordsCOVID-19HIV/AIDSStigmaCommunicable disease
Background:
Pain can influence an individual's choice to pursue medical assistance in dying (MAiD) and may also influence how family members experience that decision. Family conflict or discordance surrounding a loved one's MAiD decision can cause unique challenges affecting grief and bereavement, including disenfranchised grief. There is limited knowledge of how individuals with complex MAiD bereavement experiences describe the role of physical and emotional pain in their bereavement stories.
Aims:
This article explores the role of physical and emotional pain in the stories of family members with complex MAiD bereavement and identifies opportunities to improve care for individuals and families experiencing disagreement around MAiD.
Methods:
We conducted qualitative interviews and utilized a narrative and ethics of care approach to analyze the data.
Results:
We conducted N = 12 narrative interviews with participants in three provinces: Ontario, British Columbia, and Alberta. Descriptions of physical pain were used to justify the morality, or immorality, of MAiD in the context of patient suffering. Emotional pain described experiences where participants' feelings about MAiD went unacknowledged by their family or friends, institutions, and sociopolitical environments. We conceptualize this unacknowledged emotional pain as disenfranchised grief and make recommendations to improve care for individuals experiencing complex MAiD bereavement.
Conclusions:
Experiences of physical and emotional pain leave a lasting impact on family members with complex MAiD bereavement. Health care professionals should continue to improve care for family members following MAiD, especially where there is disagreement or family conflict.
Background
People with learning disabilities experience bereavement in the same emotionally overwhelming way as the general population. The Dual‐Process Model of grief is characterised by the oscillation between Loss‐Orientation and Restoration‐Orientation . These processes involve experiencing and accepting the emotional pain of grief ( Loss‐Orientation ) and adapting to a new world without the deceased person ( Restoration‐Orientation ).
Methods
A single case study sought to explore how Cognitive Behavioural Therapy (CBT) and Compassion Focused Therapy (CFT) principles can be used to support people with a learning disability to navigate the grieving process, as understood by the Dual‐Process Model.
Findings
This case study describes CBT formulation and assessment, and implementation of CBT and CFT strategies in a man with Williams syndrome, demonstrating improvements in mood, and a greater ability to turn towards suffering and experience both Loss ‐ and Restoration‐Oriented processing.
Conclusion
CBT and CFT may be useful and appropriate modalities for clinicians to consider when supporting people with a learning disability to navigate loss, as understood through the Dual Process Model.
This final analytical chapter builds on understandings of care developed in the preceding two chapters to explore what care is received or not received by those affected by a death in prison custody, including prisoners’ families, prison staff and other prisoners. In doing so, it makes connections with the constructions of the dying prisoner considered in chapter four, and suggests ways in which the dead prisoner is constructed. The position of death within prison culture is also discussed, drawing on research findings that show the frequency with which deaths from natural causes occur in prison has reduced the taboo around the subject.
These graphic materials are a poster presentation for the III Congress with international participation "PSYCHOSOMATIC MEDICINE OF THE XXI CENTURY: REALITIES AND PERSPECTIVES". Which took place on November 4-6, 2022 in Kyiv on the Mediamed portal.
Purpose:
Childhood epilepsy can have lasting effects which extend beyond those attributed to seizures. Previous studies have explored the lived experience of childhood epilepsy, but to our knowledge, no study has afforded adults with a diagnosis of childhood epilepsy the opportunity to reflect on their experiences. In comparison with children, adult respondents have the benefit of ample time having lapsed in order to process their experiences and have greater linguistic competencies. The aim of this study was to retrospectively capture, via interview, adults' perceptions of the impact of epilepsy during their childhood.
Methods:
A semi-structured interview schedule was developed in collaboration with patient experts to investigate participants' experiences of growing up with epilepsy in Ireland. Thirteen Irish adults aged between 18 and 35 years, who had their first seizure before the age of 16, were interviewed. Data was analysed using Big Q reflective thematic analysis.
Results:
Three main themes and 14 subthemes were generated from the data. The main themes comprised (1) disenfranchised grief, (2) need to belong and (3) walking in my shoes.
Conclusion:
All three themes demonstrated a common need for patient care that is cognisant of the child's developmental stage and psychosocial health, and the myriad of factors that contribute to both. Information, resources and clinical engagement with children with epilepsy require the input of patients with current or past experience of childhood epilepsy to guide development. A co-production approach is needed to address some of the disenfranchised and isolating experiences recollected by our participants.
Objective:
Partners of birthing mothers can themselves experience perinatal mental health (PMH) difficulties. Despite birth rates increasing amongst LGBTQIA+ communities and the significant impact of PMH difficulties, this area is under-researched. This study aimed to examine the experiences of perinatal depression and anxiety of non-birthing mothers in female same-sex parented families.
Design:
Interpretative Phenomenological Analysis (IPA) was used to explore the experiences of non-birthing mothers who self-identified as having experienced perinatal anxiety and/or depression.
Setting and participants:
Sevenparticipants were recruited from online and local voluntary and support networks for LGBTQIA+ communities and for PMH. Interviews were in-person, online or via telephone.
Measurements and findings:
Six themes were generated. Distress was characterised by feelings of "Failure and Inadequacy in Role" (i.e., parent, partner and individual) and "Powerlessness and Intolerable Uncertainty" in their parenting journey. These feelings were reciprocally influenced by perceptions of the "Legitimacy of (Di)stress as a Non-birthing Parent", which impacted help-seeking. Stressors that contributed to these experiences were: "Parenting Without" a parental role template, social recognition and safety, and parental connectedness; and "Changed Relationship Dynamics" with their partner. Finally,participants spoke about "Moving Forward" in their lives.
Key conclusions:
Some findings are consistent with the literature on paternal mental health, including parents' emphasis on protecting their family and experiencing services as focusing on the birthing parent. Others appeared distinct or amplified for LGBTQIA+ parents, including the lack of a defined and socially recognised role; stigma concerning both mental health and homophobia; exclusion from heteronormative healthcare systems; and the importance placed on biological connectedness.
Implications for practice:
Culturally competent care is needed to tackle minority stress and recognise diverse family forms.
This is an extensive editorial of the special issue of photographies "Everyday Mourning and Photography in the 21st Century"
Whatever the circumstances, the separation of infants from their mothers at birth is a traumatic experience for all concerned. The paper reports on a study designed to improve practice in this highly sensitive area. An analysis of data collected through semi‐structured interviews with 38 mothers who had experienced removal at birth identified four common themes: isolation and unacknowledged support needs; shame, stigma and the failure of others to acknowledge their maternal identity; acute trauma, immediate downturn and disenfranchised grief following infant removal; and strategies to mitigate their pain and grief. These last themes included the use of artefacts both as transitional objects to help mothers come to terms with the permanent loss of a baby, and as a means of keeping maternal identity alive and connecting with an infant who might eventually return home. In response to these findings, and in collaboration with a group of women with lived experience, HOPE boxes were designed to ameliorate the trauma and psychological burden borne by women in this situation. The contents of the boxes have been chosen to reflect the changing experiences of the women's journeys but also the range of possible potential outcomes. The intervention has considerable potential to minimise the trauma of this painful experience.
This article examines the experience of aging ultra-Orthodox families alongside a person with intellectual and developmental disabilities (IDD) in relation to parents' illness and death, followed by grief. In-depth interviews were conducted with 14 family units. Each family unit included the person with IDD, a parent, and a sibling―a total of 43 participants. Three main themes emerged: A. The difficulty in confronting illness and dying of parents alongside a family member with IDD in an Ultra-Orthodox Context. B. Exclusion of the person with IDD from parents' memorial events. C. Religious ceremonies as a strategy for coping with mourning among persons with IDD. The discussion focuses on the concept of disenfranchised grief in a religious context and its impact on the family support system. Culturally sensitive therapeutic recommendations are made for professionals working with older ultra-Orthodox Jewish families alongside a person with IDD in the context of the subject.
Background:
Death from COVID-19 in a hospital during the pandemic has meant death in isolation. Although many healthcare providers have struggled with end-of-life care for these patients, the various strategies across hospitals are not well known.
Research questions:
What end-of-life care did healthcare providers give dying COVID-19 patients and their families in hospitals during the COVID-19 pandemic? What were the key themes in care?
Study design and methods:
This qualitative study used individual, semistructured, internet and face-to-face interviews. We recruited healthcare providers who provided end-of-life care to COVID-19 patients dying in hospitals and their families. Purposive sampling was used through the academic networks at the School of Public Health, Kyoto University. Anonymized verbatim transcripts were thematically analyzed.
Results:
Fifteen doctors and 18 nurses from 23 hospitals in 13 regions across Japan participated; 16 (48%) were female, with an age range of 20-59 (most were 30-39). Participants described 51 strategies, including providing physical and psychological-spiritual care, making connections, providing death care, and arranging care environments and bereavement care for patients and their families. Four themes emerged as prominent efforts in COVID-19 end-of-life care: maintaining relationships with isolated patients, connecting patients and families, sharing decision-making in isolation, and creating humanistic episodes.
Interpretation:
Proper application and awareness of the four themes may help healthcare providers implement better end-of-life care. To compensate for limited memories due to isolation and rapid progression of the disease, communicating and creating humanistic episodes are emphasized. ICU diaries and the HCPs' arrangements based on cultural funerary procedures could be provided as grief care for the family and to build trust. End-of-life education and building partnerships among palliative care staff and nonmedical personnel on a regular basis may enhance the capacity to deliver the necessary support for end-of-life care.
Veterinary social workers (VSWs) attend to human needs at the intersection of veterinary and social work practice. With specialized training, they respond to contemporary challenges found in veterinary and other animal-related settings. Veterinary social work activities fall within four general topic areas: animal-related grief and bereavement, animal-assisted interventions, the link between human and animal violence, and compassion fatigue and conflict management. As an interdisciplinary practice, veterinary social workers collaborate with a wide variety of individuals, including veterinary generalists and specialists, veterinary technicians and nurses, veterinary students, animal shelter medical and animal care staff, municipal animal control and law enforcement personnel, and more. These mutually beneficial collaborations may result in improved pet-owner client experiences and rewarding and productive practice settings. As a new and growing field, veterinary social work leaders must develop comprehensive practice standards and associated competencies that are based on empirical research regarding outcomes for individuals and groups in veterinary and other animal-related settings. It is anticipated that these activities will inform current and future veterinary social work training programs.
Considerable growth has occurred in research on various aspects of human-animal interaction in recent years. This chapter provides an integrated overview of the current state of empirical research in each of the four core domains of veterinary social work: animal-assisted interventions, animal-related grief and bereavement, compassion fatigue and management, and links between animal and human maltreatment. We discuss strengths and limitations of available knowledge alongside opportunities for future research and, where applicable, data-driven implications for programs and policy.KeywordsAnimal crueltyAnimal-related grief and bereavementAutismCompassion fatigueFamily violenceOlder adultsResilienceTrauma
Doka (1989a, p. 4) defined disenfranchised grief as “the grief that persons experience when they incur a loss that is not or cannot be openly acknowledged, publicly mourned, or socially supported.” He suggested that disenfranchisement can apply to unrecognized relationships, losses, or grievers, as well as to certain types of deaths.
This article contends that disenfranchisement in bereavement may have a potentially broader scope than has been hitherto recognized. That claim is defended by exploring further the implications of disenfranchisement and by suggesting ways in which certain understandings or misunderstandings of the dynamic qualities of grief, mourning, and their outcomes may be open to disenfranchisement or may participate in disenfranchisement.
The aims of this argument are to enhance the concept of disenfranchised grief in itself and to deepen appreciation of the full range of all that is or can be experienced in bereavement.
Studies of grief and bereavement have long recognized that relationship and attachment to the deceased is a critical determinant of the intensity of grief. Yet most studies only examine the impact of death on the immediate family or close kin. There is often an implicit assumption that such close relationships only exist among spouses or other members of the immediate family.This paper considers the impact of grief on nontraditional relationships. These include extramarital affairs, cohabitation, and homosexual relationships. Utilizing existing literature and case studies, the paper discusses the ways in which the tasks of bereavement can be complicated in nontraditional relationships. While grief may be intensified, resources for resolving grief are often limited. It may not be possible to utilize formal and informal support systems effectively. Religion and rituals may constrain, rather than facilitate, grief work.The paper describes five dimensions that bear upon the resolution of grief in nontraditional relationships. These include affect/meaning, openness-secrecy, acceptance-rejection, opportunity for replacement, and social support. The paper also describes the ways in which such grief might be manifested and offers suggestions for assisting people in recognizing and resolving grief.
In Kenneth Doka's Disenfranchised Grief, papers examined a bellwether of our times, disenfranchised grief. One variety is the grief felt by people with no socially legitimate right to grieve. The increasing prominence of this kind of grief stems from the extra-familial relationships that are coming more and more to constitute our personal lives. The recommendation implicit in most analyses is to enlarge the circle of legitimate grievers. This article explores the latent functions of enfranchising the disenfranchised griever. This issue is a specific case of a more general problem: the allocation of sympathy and support in any person's dying.
Multivariate analysis of variance was used to investigate relationships of age, IQ, sex, and percentage of life institutionalized. These were examined with age perception of self and others and concept of death in 65 mentally retarded adults, aged 17 to 62. A significant multivariate F was obtained for age and a trend toward significance was obtained for IQ. Results suggest the developmental process involved in age perception of others and concept of death is similar in nonmentally retarded children and mentally retarded adults. Age perception of self was less substantially related to factors included in this study. Implications and questions for future exploration are suggested.
