Perinatal loss and parental grief: the challenge of ambiguity and disenfranchised grief

Following perinatal loss, a type of ambiguous loss, bereaved couples struggle with and experience distress due to various forms of ambiguity. Moreover, the juxtaposition of their grief with society's minimization often disenfranchises them from traditional grieving processes. The purpose of this study was to explore sources of ambiguity and disenfranchised grief related to perinatal loss. Audio-taped interviews with 13 bereaved couples at 2, 6, and 13 months following the death of their fetus or infant were analyzed. Several categories of ambiguity and disenfranchised grief emerged, pertaining to: (a) the viability of the pregnancy; (b) the physical process of pregnancy loss; (c) making arrangements for the remains; and (d) sharing the news. This study uncovers the many sources of ambiguity and disenfranchised grief that bereaved couples face in interactions with family, friends, society, and healthcare professionals. These insights may inform healthcare professionals in their attempts to ease distress related to perinatal loss.     

Qualitative exploration of the nature of grief-related beliefs and expectations

Societal expectations of grief impact the experience of bereavement. The congruence of societal expectations with current scientific understanding of grief is unknown. Therefore two qualitative studies explored community perceptions of grief. In study one, three small focus groups (N = 9) examined grief-related expectations associated with hypothetical scenarios of bereavement. In study two, the impact of grief-related perceptions on the lived experience of bereavement for 11 individuals was explored through semi-structured interviews. Across both studies, elements of a traditional stage model view of grief were evident, with participants viewing emotional expression of grief as important. An avoidant coping style in the bereaved was considered problematic. Findings of study two suggested that grief-related beliefs may impact the bereavement experience via appraisal of the grief response and willingness to support bereaved individuals. The studies suggested that stage model assumptions in the beliefs of the general population persist, although there was a recognition of diversity in the grief response.     

Adolescent grief: relationship category and emotional closeness

Bereaved adolescents (N = 90) who had experienced relatively common death losses (e.g., grandparent, friend) completed the Texas Revised Inventory of Grief and the Emotional Closeness Scale and Continuum. Results indicated that present grief was significantly higher for friend than for grandparent death loss. A MANOVA revealed that those in the high closeness group reported significantly higher mean scores on past and present grief than those in the low closeness group. Finally, in a hierarchal multiple regression, after demographic variables were entered (e.g., age, present at death), emotional closeness added significant variance to the prediction of past and present grief. This research contributes to the understanding of grief intensity following adolescents' most common death losses and highlights the importance of counselors' intentionally and directly assessing bereaved adolescents' perceived emotional closeness to the deceased as part of grief-related counseling.     

The fundamental paradox in the grief literature: a critical reflection

A key theme in the bereavement literature is the recognition that every grief experience is unique and dependent on many variables, such as the circumstances of the death, characteristics of the bereaved individual, their relationship with the deceased, the provision and availability of support, and a myriad of sociocultural factors. Concurrently, there are corresponding efforts to define "normal" grief and delineate it from "complicated" grief experiences. The discord between these two potentially opposing statements remains a paradox evident within the three major tensions within the thanatological literature--the dominance of grief theories, the medicalization of grief, and the efficacy of grief interventions. Three recommendations for moving beyond the paradox are discussed--the provision of improved grief education for service providers, the bereaved, and the wider community; the conduct of research that emphasizes the context of grief and is relevant to service provision; and the examination of current grief interventions.     

African Americans in bereavement: grief as a function of ethnicity

Few empirical studies have explored the grieving process among different ethnic groups within the United States, and very little is known about how African Americans and Caucasians may differ in their experience of loss. The purpose of this study was to examine the African-American experience of grief, with particular emphasis on issues of identity change, interpersonal dimensions of the loss, and continuing attachments with the deceased. Participants were 1,581 bereaved college students (940 Caucasians and 641 African Americans) attending classes at a large southern university. Each participant completed the Inventory of Complicated Grief-Revised, the Continuing Bonds Scale, and questions regarding the circumstances surrounding his or her loss. Results revealed that African Americans experienced more frequent bereavement by homicide, maintenance of a stronger continuing bond with the deceased, greater grief for the loss of extended kin beyond the immediate family, and a sense of support in their grief, despite their tendency to talk less with others about the loss or seek professional support for it. Overall, African Americans reported higher levels of complicated grief symptoms than Caucasians, especially when they spent less time speaking to others about their loss experience. Implications of these findings for bereavement support services for African Americans were briefly noted.     

Parental bereavement: a panoramic view

This study is aimed at identifying central themes of bereavement. A qualitative approach was employed in the analyses of interviews with 22 bereaved parents. The analyses yielded four central issues or themes of bereavement, each with its own set of sub-themes or categories, as the narrative demanded. The first of these themes, pertaining to the life of the family before the death of a child had taken place, was named the risk factor. Circumstances leading up to the death, surrounding the death, the cause of death, and the events following the death were coded as bereavement circumstances. The grief reactions codes were divided into categories of emotional, physical, behavioral, relational, spiritual, and cognitive reactions, as described by the participants. Finally, the mourning codes described the mechanisms employed by the participants in their attempts to survive and continue living after the death. These findings can be used in the training of support workers and the development of bereavement interventions.     

Children of the condemned: grieving the loss of a father to death row

This article explores the effects of a death sentence and execution on the children of the accused. Insight into the unique bereavement of this population is provided, while contributing to the literature on death and dying. The experience of losing a father to death row and eventual execution is compared to the wider population of children with incarcerated parents and it is determined that children of death row inmates contend with a much more complicated grief process, one that has gone largely unstudied. This article contains a brief discussion of disenfranchised grief and nonfinite loss, two theories that, we argue, shape the children's grief process. The results section of the article uses qualitative data gathered from 19 children to explore the role that nonfinite loss and disenfranchised grief share in the nature of their bereavement. Our discussion focuses on the impact of stigma and violence on the grieving process. Following a discussion of the unique challenges confronting the children of death row inmates is a discussion of the implications that their experience has for practice.     

Parental grief after a child's drug death compared to other death causes: investigating a greatly neglected bereavement population

This comparative survey contrasted 571 parents who lost children to various death causes: 48 to drug-related deaths and overdoses, 462 to suicide, 24 to natural death cases, and 37 to mostly accidental death cases. Groups were compared in terms of grief difficulties, mental health problems, posttraumatic stress, and stigmatization. Results did not show any appreciable differences in these respects between the suicide bereaved parents and those losing children to drug-related deaths. However, when the suicide and drug-related death survivors were specifically contrasted against accidental and natural death loss cases, a consistent pattern emerged showing the former group was consistently more troubled by grief and mental health problems than the latter two sub-groups. These differences remained when controls of time since the loss and gender differences were employed as covariates. These findings suggest that the powerful and intense stigma against drug use and mental illness, shared among the public-at-large, imposes challenges in healing of immense proportion for these parents as they find less compassionate responses from their significant others, following their losses.     

Perinatal loss: a qualitative study in Northern Ireland

This article describes the experiences of women in Northern Ireland who have experienced a miscarriage or stillbirth. Pregnancy loss encompasses several dimensions of loss for women, loss of the future, loss of self-identity, and the loss of anticipated parenthood. The study explored how women emotionally responded to loss and the care they received from medical staff. Burial arrangements for the remains of the baby are also explored. The methodology adopted a narrative approach based upon in-depth interviews with 23 women who attended pregnancy loss self-help groups. The women's narratives highlight their emotional responses to loss, the medicalization of perinatal grief, and burial arrangements. Women felt that their experience was emotionally negative in that they had been subjected to a rationalizing process of medicalization. The primary focus for the women was on the need to recover space for their emotions and seek acceptance and recognition of the validity of their grief. The study demonstrated that the women's response to being marginalized led them to make sense of their experiences and to create spaces of resistance to medicalization. The way in which women placed emotion at the center of their narratives is taken to be a powerful indicator that the support they require from professionals should take account of the meanings they have constructed from their experience of loss.     

Disenfranchised grief and nonfinite loss as experienced by the families of death row inmates

The families of death row inmates experience grief and loss issues that have been neglected by scholars and clinicians alike. The issues found in this population are unique and require our understanding. The present study uses the concepts of disenfranchised grief and nonfinite loss to uncover the pain experienced by the children and other family members who have a loved one on death row. Kenneth Doka's (1989) concept of disenfranchised grief is utilized to bring attention to the ways in which the circumstances surrounding an execution leave the family members of those condemned to death outside of the "grieving rules" that exist in the United States. Family members are disenfranchised from their grief, as society does not socially validate their pain. The loss that they feel is also nonfinite (Bruce & Schultz, 2001) in that it is continuous and denies the families all of the hopes, dreams, and expectations that they had for their loved one who now sits on death row. The qualitative interview method was utilized by the authors of this study to gather data from 26 family members of death row inmates who are incarcerated along the East Coast of the United States. The reactions of this group of family members are varied and complex, yet they include the following common responses: social isolation due to stigma and their own feelings of criminalization, intensified family conflict between family members who grieve differently from one another, diminished self-esteem, shame, diffused and specific feelings of guilt, and a chronic state of despair. This study explores virtually untapped terrain. An examination of the microlevel effects of the death penalty on families provides insight in to the area of death and dying, especially as it is related to disenfranchised loss and nonfinite grief. In addition, this study provides insight into the death penalty and its effects.     

Problematic emotions and maternal grief

The study was an empirical examination of the relation of personality proneness to "problematic social emotions"--envy (Dispositional Envy Scale), jealousy (Interpersonal Jealousy Scale), and shame and guilt (Personal Feelings Questionnaire-2)--to maternal grief (Perinatal Grief Scale-33) following miscarriage, stillbirth, neonatal death, or infant/child death. The 441 women who participated in the study were enrolled from the Website, e-mail contact lists, and parent support groups of an organization that offers information and support to bereaved parents. All four problematic emotions were positively correlated with maternal grief. Envy, jealousy, and guilt made significant unique contributions to the variance in maternal grief. Overall, time lapse since the loss and the four problematic emotion predispositions explained 43% of the variance in maternal grief following child bereavement.     

Bereavement: an incomplete rite of passage

A bereavement ritual observed during anthropological fieldwork in Peru gives basis to this article which asserts that bereavement has become an incomplete rite of passage. The article reviews the role of ritual and rites of passage, examines other anthropologic examples of death and bereavement rituals, and identifies the lack of post-funeral ritual for many bereaved individuals in the United States. While funerary rituals which end with the funeral and burial of the dead are helpful in providing immediate structure for the bereaved, they are not congruent with the long-term emotional needs and reconstruction of meaning within grief. The author acknowledges value of both private ritual and reunions of the community of mourners, and recommends that bereavement counselors and/or the funeral industry offer to help bereaved construct a "ritual of remembrance and new meaning" after time has allowed them to move along in meaning reconstruction processes of making sense, finding benefits, and identity change.     

Living beyond the unanticipated sudden death of a partner: a phenomenological study

This research project explored grief and its impact upon men and women who have experienced the sudden and unanticipated death of his or her partner. It included what grief meant to them, how it was manifested in his or her everyday lives and how his or her partner's death had impacted upon his or her relationship with themselves, with others and the world. A Husserlian phenomenological approach was used to explore the experiences of the ten women and five men whose partner had died up to five years prior to being interviewed. The need for the surviving partner to continue to participate in everyday life placed great strain upon the internal resources of the surviving partner. The surviving partner needed to reinvent him or herself, in an attempt to become independent and regain functionality, whilst dealing with the sadness and loss that they had experienced. The surviving partner discovered that a new life order emerged that included hope, optimism, planning for the future and perhaps the prospect of a new relationship. The death of a partner left the surviving partner with a loss that would always be a part of them, with the memories of his or her relationship being maintained within them that will never be replaced by somebody else. The results of this research project reinforce the need for ongoing education of the community in grief and bereavement issues in order to increase the awareness of the support needs of the bereaved person. The length of time and amount of energy required to incorporate the experience into the survivor's life, is greatly underestimated by the community, and perhaps by some of the health and caring professionals. Colonial and hospital based bereavement support services need to be established and be proactive using outreach programs, actively offering the suddenly bereaved partner and family support and information.     

Images of heaven and the spiritual afterlife: Qualitative analysis of children's storybooks about death, dying, grief, and bereavement

Many parents turn to picture books and storybooks to help explain issues surrounding death and dying to their young children. In addition to dealing with topics such as death, funerals, memories, and grief, a number of the books also mention the concept of heaven and what our loved ones might experience after they die. This article uses qualitative research methods to analyze 49 children's storybooks that touch on the existence of heaven or a spiritual afterlife. Results show that heaven is portrayed in a simplistic fashion, as a place high in the sky with bright lights, angels, and clouds. Even as heaven is presented in a relatively simple way, there are also patterned differences in depictions of the spiritual afterlife depending upon whether the decedent in the book was a family pet, a child, a parent, or a grandparent. The article concludes with a discussion of how these depictions of heaven and the afterlife might help young children cope with death-related grief.     

Through the touch of god: child death and spiritual sustenance in a Hutterian colony

Nestled in more than 5,000 acres of farmland in rural South Dakota, one Hutterian colony flourishes with more than 23 families and a population of 115 people. Very little is known about the ways in which Hutterites experience traumatic infant and child death on the colony. No research studies to date have explored this topic. This is an ethnographic study that utilized extended observations of the group and both individual and group interviewing in order to create a cultural portrait specifically focusing on Hutterites experiencing traumatic child death. Observations were organized into five thematic categories: 1) details of the actual death experience; 2) emotional and physical reactions to the loss; 3) familial and communal response; 4) coping and rituals; and 5) spirituality. The role of communal mourning, ritualization, and spirituality in creating a healing milieu for bereaved families is discussed.     

Psychosocial effects of war experiences among displaced children in southern Darfur

This study focused on assessing the psychosocial effects of the long standing, high intensity, and guerrilla-style of warfare among displaced children in Southern Darfur. The goal was to better understand the etiology, prognosis, and treatment implications for traumatic reactions, depression, and grief symptoms in this population. Three hundred thirty-one children aged 6-17 from three IDP Camps were selected using a quota sampling approach and were administered a Demographic Questionnaire, Child Post Traumatic Stress Reaction Index, Child Depression Inventory, and the Expanded Grief Inventory. Forty-three percent were girls and 57% were boys. The mean age of the children was 12 years. Results found that children were exposed to a very large number of war experiences with no significant differences between genders for types of exposure, including rape, but with older children (13-17 years) facing a larger number of exposures than younger children (6-12 years). Out of the 16 possible war experiences, the mean number was 8.94 (SD = 3.27). Seventy-five percent of the children met the DSM-IV criteria for PTSD, and 38% exhibited clinical symptoms of depression. The percentage of children endorsing significant levels of grief symptoms was 20%. Increased exposure to war experiences led to higher levels of: (1) traumatic reactions; (2) depression; and (3) grief symptoms. Of the 16 war experiences, abduction, hiding to protect oneself, being raped, and being forced to kill or hurt family members were most predictive of traumatic reactions. Being raped, seeing others raped, the death of a parent/s, being forced to fight, and having to hide to protect oneself were the strongest predictors of depressive symptoms. War experiences such as abduction, death of one's parent/s, being forced to fight, and having to hide to protect oneself were the most associated with the child's experience of grief. In addition to Total Grief, Traumatic Grief, Existential Grief, and Continuing Bonds were measured in these children. Although trauma, depression, and grief often exist as co-morbid disorders, the mechanisms and pathways of these is less understood. In this study we used Structural Equation Modeling to better understand the complex interaction and trajectories of these three symptoms evolving from war exposure and loss. This study is the first of its kind to assess the psychosocial effects of war experiences among children currently living in war zone areas within Sudan. It identifies some of the most prevalent war-related atrocities and their varying impact on the children's psychological well-being and overall adjustment. Implications for planning mental health interventions are discussed.     

One half living for two: cross-cultural paradigms of twinship and twin loss

Many indigenous African religions, specifically that of the Yoruba of Nigeria, the Bamana and Malinke of Mali, and the Nuer of southern Sudan, are characterized by a system of spiritual beliefs surrounding the life and death of twins. Separation by death poses an extreme threat to the soul(s) of twins, and many rituals and customs designed to sustain the spirit of surviving twins are widely practiced. Despite twin loss being overlooked in Western psychological studies of grief, recent research and in-depth interviews of bereaved twins clearly identifies the unique nature of losing a twin, and the importance of acknowledging this distinction in the surviving twin's ability to cope with the death. The spiritual practices of the Yoruba, Bamana, Malinke, and Nuer are conducive to dealing with the specific nature of twin loss. They take into account the uniqueness of the twinship experience, and provide material for reflection on healing approaches outside the traditional parameters of psychology.     

Healing components of a bereavement camp: children and adolescents give voice to their experiences

This qualitative study is the follow-up to a quantitative controlled study which showed a decrease in childhood traumatic grief and posttraumatic stress disorder symptoms in parentally bereaved children participating in a bereavement camp. The purpose of this study was to identify the healing components of this camp model. Semi-structured interviews with 19 children and 13 parents/guardians were conducted 3 to 9 months after participation in the bereavement camp. Therapeutic Interventions and Traditional Camp Activities emerged as themes. The themes are discussed in relation to previous research as are limitations of the study and the implications for theory, practice, and future research.     

Complicated grief symptoms in caregivers of persons with lung cancer: the role of family conflict, intrapsychic strains, and hospice utilization

Guided by a stress process conceptual model, this study examines social and psychological determinants of complicated grief symptoms focusing on family conflict, intrapsychic strains, and the potential moderating effect of care quality and hospice utilization. Relying on data from 152 spouse and adult child lung cancer caregiver survey respondents, drawn from an ancillary study of the Assessment of Cancer CarE and SatiSfaction (ACCESS) in Wisconsin, hierarchical multiple regression analysis was used to examine determinants of complicated grief. After controlling for contextual factors and time since death, complicated grief symptoms were higher among caregivers with less education, among families with lower prior conflict but higher conflict at the end-of-life, who had family members who had difficulty accepting the illness, and who were caring for patients with greater fear of death. Additionally, hospice utilization moderated the effect of fear of death on complicated grief. Findings suggest that family conflict, intrapsychic strains, and hospice utilization may help to explain the variability found in complicated grief symptoms among bereaved caregivers. Implications for enhancing complicated grief assessment tools and preventative interventions across the continuum of cancer care are highlighted.