Behavioral Sciences

Editorial

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Open AccessEditorial

Family Communication at the End of Life

by Maureen P. Keeley

Behav. Sci. 2017, 7(3), 45; https://doi.org/10.3390/bs7030045 - 14 Jul 2017

Cited by 51 | Viewed by 15712

Abstract

People often feel awkward and ill at ease when faced with the opportunity for communication at the end of life, thus the overall theme for the articles in this special issue is the creation of more awareness and knowledge regarding the depth, breadth, [...] Read more.

People often feel awkward and ill at ease when faced with the opportunity for communication at the end of life, thus the overall theme for the articles in this special issue is the creation of more awareness and knowledge regarding the depth, breadth, and importance of current research exploring family communication at the end of life. This introductory essay attempts to accomplish the following: (1) discuss the importance of talk regarding death; (2) highlight the formative role of family interactions on the death and dying process; and (3) outline the articles in this special issue. Scholars contributing to this special issue on “Family Communication at the End of Life” have provided evidence that communication is important between and for terminally ill individuals, family members, and healthcare/palliative care specialists. Overall, research exploring communication at the end of life is especially relevant because every person experiences the death and loss of loved ones, and ultimately faces the reality of their own death. Full article

(This article belongs to the Special Issue Family Communication at the End of Life)

Research

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467 KiB

Open AccessFeature PaperArticle

Dementia at the End of Life and Family Partners: A Symbolic Interactionist Perspective on Communication

by Christopher Johnson, Jordan Kelch and Roxanna Johnson

Behav. Sci. 2017, 7(3), 42; https://doi.org/10.3390/bs7030042 - 9 Jul 2017

Cited by 6 | Viewed by 8536

Abstract

People with dementia are not dying; they are experiencing changes in the brain. This paper utilizes a symbolic interaction theoretical perspective to outline communicative alternatives to polypharmacy. There is a growing interest in sociological interventions to untangle the “disordered discourses” associated with dementia. [...] Read more.

People with dementia are not dying; they are experiencing changes in the brain. This paper utilizes a symbolic interaction theoretical perspective to outline communicative alternatives to polypharmacy. There is a growing interest in sociological interventions to untangle the “disordered discourses” associated with dementia. Such practices challenge common stigmas attached to dementia as an “ongoing funeral” or “death certificate.” Changing the expectations, attitudes and communication patterns of family care partners can positively impact them and the person living with dementia at the end of life. This paper delineates multiple non-verbal communication interventions (e.g., the trip back in time, dementia citizenship and sensory engagement modalities) to explore techniques to engage persons with advanced dementia. Full article

(This article belongs to the Special Issue Family Communication at the End of Life)

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210 KiB

Open AccessFeature PaperArticle

Family Communication about End-of-Life Decisions and the Enactment of the Decision-Maker Role

by April R. Trees, Jennifer E. Ohs and Meghan C. Murray

Behav. Sci. 2017, 7(2), 36; https://doi.org/10.3390/bs7020036 - 7 Jun 2017

Cited by 24 | Viewed by 8361

Abstract

End-of-life (EOL) decisions in families are complex and emotional sites of family interaction necessitating family members coordinate roles in the EOL decision-making process. How family members in the United States enact the decision-maker role in EOL decision situations was examined through in-depth interviews [...] Read more.

End-of-life (EOL) decisions in families are complex and emotional sites of family interaction necessitating family members coordinate roles in the EOL decision-making process. How family members in the United States enact the decision-maker role in EOL decision situations was examined through in-depth interviews with 22 individuals who participated in EOL decision-making for a family member. A number of themes emerged from the data with regard to the enactment of the decision-maker role. Families varied in how decision makers enacted the role in relation to collective family input, with consulting, informing and collaborating as different patterns of behavior. Formal family roles along with gender- and age-based roles shaped who took on the decision-maker role. Additionally, both family members and medical professionals facilitated or undermined the decision-maker’s role enactment. Understanding the structure and enactment of the decision-maker role in family interaction provides insight into how individuals and/or family members perform the decision-making role within a cultural context that values autonomy and self-determination in combination with collective family action in EOL decision-making. Full article

(This article belongs to the Special Issue Family Communication at the End of Life)

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Open AccessFeature PaperArticle

Communicatively Constructing the Bright and Dark Sides of Hope: Family Caregivers’ Experiences during End of Life Cancer Care

by Jody Koenig Kellas, Katherine M. Castle, Alexis Johnson and Marlene Z. Cohen

Behav. Sci. 2017, 7(2), 33; https://doi.org/10.3390/bs7020033 - 15 May 2017

Cited by 25 | Viewed by 7920

Abstract

(1) Background: The communication of hope is complicated, particularly for family caregivers in the context of cancer who struggle to maintain hope for themselves and their loved ones in the face of terminality. In order to understand these complexities, the current study examines [...] Read more.

(1) Background: The communication of hope is complicated, particularly for family caregivers in the context of cancer who struggle to maintain hope for themselves and their loved ones in the face of terminality. In order to understand these complexities, the current study examines the bright and dark sides of how hope is communicated across the cancer journey from the vantage point of bereaved family caregivers; (2) Methods: We analyzed interviews with bereaved family caregivers using qualitative thematic and case oriented strategies to identify patterns in the positive and negative lived experiences when communicating about hope at the end of life; (3) Results: Two overarching patterns of hope emerged. Those who experienced hope as particularized (focused on cure) cited communication about false hope, performing (faking it), and avoidance. Those who transitioned from particularized to generalized hope (hope for a good death) reported acceptance, the communication of hope as social support, prioritizing family, and balancing hope and honesty; (4) Conclusion: Family caregivers face myriad complexities in managing the bright and dark sides of hope. Interventions should encourage concurrent oncological and palliative care, increased perspective-taking among family members, and encourage the transition from particularized to generalized hope. Full article

(This article belongs to the Special Issue Family Communication at the End of Life)

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Open AccessFeature PaperArticle

Physicians’ Religious Topic Avoidance during Clinical Interactions

by Melinda M. Villagran, Brenda L. MacArthur, Lauren E. Lee, Christy J. W. Ledford and Mollie R. Canzona

Behav. Sci. 2017, 7(2), 30; https://doi.org/10.3390/bs7020030 - 8 May 2017

Cited by 4 | Viewed by 5780

Abstract

Religious and spiritual (R/S) conversations at the end-of-life function to help patients and their families find comfort in difficult circumstances. Physicians who feel uncertain about how to discuss topics related to religious beliefs may seek to avoid R/S conversations with their patients. This [...] Read more.

Religious and spiritual (R/S) conversations at the end-of-life function to help patients and their families find comfort in difficult circumstances. Physicians who feel uncertain about how to discuss topics related to religious beliefs may seek to avoid R/S conversations with their patients. This study utilized a two-group objective structured clinical examination with a standardized patient to explore differences in physicians’ use of R/S topic avoidance tactics during a clinical interaction. Results indicated that physicians used more topic avoidance tactics in response to patients’ R/S inquiries than patients’ R/S disclosures; however, the use of topic avoidance tactics did not eliminate the need to engage in patient-initiated R/S interactions. Full article

(This article belongs to the Special Issue Family Communication at the End of Life)

220 KiB

Open AccessFeature PaperArticle

Death Cafés: Death Doulas and Family Communication

by Paula K. Baldwin

Behav. Sci. 2017, 7(2), 26; https://doi.org/10.3390/bs7020026 - 26 Apr 2017

Cited by 25 | Viewed by 10248

Abstract

The Death Café is part of the Death Positive movement, and as such, is uniquely positioned to bring the dialogue about death and dying to the public. Participants in a Death Café typically have two different perspectives. Some participants have not experienced death [...] Read more.

The Death Café is part of the Death Positive movement, and as such, is uniquely positioned to bring the dialogue about death and dying to the public. Participants in a Death Café typically have two different perspectives. Some participants have not experienced death in their family and friends’ circle and wish to converse with others about their beliefs on death and dying. Others are those who have experienced death somewhere in their circle of friends and families. One of goals of the Death Café facilitators is to help attendees reconcile their family narratives regarding death using the broader lens of the Death Café. Using the insights provided by interviews from 15 Death Café facilitators, this manuscript discusses the role of the Death Café facilitators as the death doulas of family communication. Full article

(This article belongs to the Special Issue Family Communication at the End of Life)

219 KiB

Open AccessFeature PaperArticle

Contradictions and Promise for End-of-Life Communication among Family and Friends: Death over Dinner Conversations

by Andrea Lambert South and Jessica Elton

Behav. Sci. 2017, 7(2), 24; https://doi.org/10.3390/bs7020024 - 20 Apr 2017

Cited by 30 | Viewed by 7482

Abstract

The free, open-access website called “Let’s Get Together and Talk about Death”, or Death over Dinner (DoD), provides resources for initiating end-of-life conversations with family and friends by taking the frightening—talking about death—and transforming it into the familiar—a conversation over dinner. This qualitative, [...] Read more.

The free, open-access website called “Let’s Get Together and Talk about Death”, or Death over Dinner (DoD), provides resources for initiating end-of-life conversations with family and friends by taking the frightening—talking about death—and transforming it into the familiar—a conversation over dinner. This qualitative, descriptive study uses grounded theory and thematic analysis to answer the following research question: How do friend and family groups communicate about death and dying in DoD conversations? To answer this question, 52 dinner groups were recruited and conversations were conducted, which consisted of a facilitator and volunteers. The facilitators were the researchers or research assistants who allowed dinner participants to control the conversation and identify topics of interest, and participants were free to share as much or as little as they wanted. Our analysis revealed that family and friend groups communicated similarly in that they talked about similar topics and used similar communication strategies to discuss those topics. Three major themes emerged: Desire for a good death, which juxtaposed people’s perceptions of a “dreaded” death with those of a “desirable” death; tactics for coping, which consisted of the subthemes of humour to diffuse tension or deflect discomfort, spiritual reassurance, and topic avoidance; and topics that elicit fear or uncertainty, which consisted of the subthemes of organ and whole-body donation, hospice and palliative care, wills and advance directives. Ultimately, however, participants felt their experiences were positive and DoD shows promise as a tool for families to engage in end-of-life conversations. Full article

(This article belongs to the Special Issue Family Communication at the End of Life)

482 KiB

Open AccessFeature PaperArticle

Designing Effective Interactions for Concordance around End-of-Life Care Decisions: Lessons from Hospice Admission Nurses

by Carey Candrian, Channing Tate, Kirsten Broadfoot, Alexandra Tsantes, Daniel Matlock and Jean Kutner

Behav. Sci. 2017, 7(2), 22; https://doi.org/10.3390/bs7020022 - 18 Apr 2017

Cited by 10 | Viewed by 7795

Abstract

Near the end of life, hospice care reduces symptom-related distress and hospitalizations while improving caregiving outcomes. However, it takes time for a person to gain a sufficient understanding of hospice and decide to enroll. This decision is influenced by knowledge of hospice and [...] Read more.

Near the end of life, hospice care reduces symptom-related distress and hospitalizations while improving caregiving outcomes. However, it takes time for a person to gain a sufficient understanding of hospice and decide to enroll. This decision is influenced by knowledge of hospice and its services, emotion and fear, cultural and religious beliefs, and an individual’s acceptance of diagnosis. Hospice admission interactions, a key influence in shaping decisions regarding hospice care, happen particularly late in the illness trajectory and are often complex, unpredictable, and highly variable. One goal of these interactions is ensuring patients and families have accurate and clear information about hospice care to facilitate informed decisions. So inconsistent are practices across hospices in consenting patients that a 2016 report from the Office of Inspector General (OIG) entitled “Hospices should improve their election statements and certifications of terminal illness” called for complete and accurate election statements to ensure that hospice patients and their caregivers can make informed decisions and understand the costs and benefits of choosing hospice care. Whether complete and accurate information at initial admission visits improves interactions and outcomes is unknown. Our recent qualitative work investigating interactions between patients, caregivers, and hospice nurses has uncovered diverse and often diverging stakeholder-specific expectations and perceptions which if not addressed can create discordance and inhibit decision-making. This paper focuses on better understanding the communication dynamics and practices involved in hospice admission interactions in order to design more effective interactions and support the mandate from the OIG to provide hospice patients and their caregivers with accurate and complete information. This clarity is particularly important when discussing the non-curative nature of hospice care, and the choice patients make to forego aggressive treatment measures when they enroll in hospice. In a literal sense, to enroll in hospice means to bring in support for end-of-life care. It means to identify the need for expertise around symptom management at end-of-life, and agree to having a care team come and manage someone’s physical, psychosocial, and/or spiritual needs. As with all care, hospice can be stopped if it is no longer considered appropriate. To uncover the communication tensions undergirding a hospice admission interaction, we use Street’s ecological theory of patient-centered communication to analyze a case exemplar of a hospice admission interaction. This analysis reveals diverse points of struggle within hospice decision-making processes around hospice care and the need for communication techniques that promote trust and acceptance of end-of-life care. Lessons learned from talking about hospice care can inform other quality initiatives around communication and informed decision-making in the context of advance care planning, palliative care, and end-of-life care. Full article

(This article belongs to the Special Issue Family Communication at the End of Life)

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188 KiB

Open AccessFeature PaperArticle

How Older Adults and Their Families Perceive Family Talk about Aging-Related EOL Issues: A Dialectical Analysis

by Nichole Egbert, Jeffrey T. Child, Mei-Chen Lin, Carol Savery and Tammy Bosley

Behav. Sci. 2017, 7(2), 21; https://doi.org/10.3390/bs7020021 - 17 Apr 2017

Cited by 11 | Viewed by 6816

Abstract

For older adults, approaching end-of-life (EOL) brings unique transitions related to family relationships. Unfortunately, most families greatly underestimate the need to discuss these difficult issues. For example, parents approaching EOL issues often struggle with receiving assistance from others, avoiding family conflict, and maintaining [...] Read more.

For older adults, approaching end-of-life (EOL) brings unique transitions related to family relationships. Unfortunately, most families greatly underestimate the need to discuss these difficult issues. For example, parents approaching EOL issues often struggle with receiving assistance from others, avoiding family conflict, and maintaining their sense of personhood. In addition, discussions of EOL issues force family members to face their parents’ mortality, which can be particularly difficult for adult children to process emotionally. This study explored aging issues identified by aging parents and their families as they traverse these impending EOL changes. Ten focus groups of seniors (n = 65) were conducted. Focus groups were organized according to race (African-American/European-American), gender, and whether the older adult was living independently or in an assisted care facility. When asked open-ended questions about discussing aging and EOL issues with family members, participants revealed tensions that led us to consider Relational Dialectics Theory as a framework for analysis. The predominant tension highlighted in this report was certainty versus uncertainty, with the two sub-themes of sustained life versus sustained personhood and confronting versus avoiding EOL issues. For these data, there were more similarities than differences as a result of gender, race, or living situation than one might expect, although culture and financial status were found to be influential in the avoidance of EOL discussions. The results of this study help to provide additional insight into relational dialectics related to aging, EOL, and the importance of communication in facilitating family coping. Full article

(This article belongs to the Special Issue Family Communication at the End of Life)

190 KiB

Open AccessFeature PaperArticle

Upstreaming and Normalizing Advance Care Planning Conversations—A Public Health Approach

by Maryjo Prince-Paul and Evelina DiFranco

Behav. Sci. 2017, 7(2), 18; https://doi.org/10.3390/bs7020018 - 12 Apr 2017

Cited by 41 | Viewed by 8002

Abstract

As a society, we simply don’t talk about this universal experience called dying and death; in fact, we ignore it until we have to face it. Thus, it is often in a crisis experience when we have to make decisions while we are [...] Read more.

As a society, we simply don’t talk about this universal experience called dying and death; in fact, we ignore it until we have to face it. Thus, it is often in a crisis experience when we have to make decisions while we are laden with uncertainty and intense emotions. Sixty percent of people say making sure their family is not burdened by tough decisions is extremely important, yet 56% of them have not held a conversation about its context. Instead of waiting to make end-of-life decisions, let us begin to think about what matters most while we are living, what we value most, and how we translate these values into conversations about what is important. As a public health concern, if we can upstream the advance care planning discussion into usual health promotion activities, perhaps, as a society, we can begin to normalize and reshape how we make decisions about the last chapters of our lives. Full article

(This article belongs to the Special Issue Family Communication at the End of Life)

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Open AccessFeature PaperArticle

Final Conversations: Overview and Practical Implications for Patients, Families, and Healthcare Workers

by Maureen P. Keeley and Mark A. Generous

Behav. Sci. 2017, 7(2), 17; https://doi.org/10.3390/bs7020017 - 5 Apr 2017

Cited by 21 | Viewed by 8414

Abstract

The current paper presents a summary of a 12-year body of research on final conversations, which will be useful for healthcare providers who work with patients and family nearing the end-of-life, as well as for patients and their family members. Final conversations encompass [...] Read more.

The current paper presents a summary of a 12-year body of research on final conversations, which will be useful for healthcare providers who work with patients and family nearing the end-of-life, as well as for patients and their family members. Final conversations encompass any and all conversations that occur between individuals with a terminal diagnosis and their family members (all participants are aware that their loved one is in the midst of the death journey). Final conversations take the family member’s perspective and highlights what are their memorable messages with the terminally ill loved one. In this paper the authors highlight the message themes present at the end-of-life for both adults and children, the functions each message theme serves for family members, and lastly, the communicative challenges of final conversations. Additionally, the authors discuss the current nature and future of final conversations research, with special attention paid to practical implications for healthcare providers, patients, and family members; also, scholarly challenges and future research endeavors are explored. Full article

(This article belongs to the Special Issue Family Communication at the End of Life)

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Open AccessFeature PaperArticle

Communication Matters: Exploring the Intersection of Family and Practitioner End of Life Communication

by Leah M. Omilion-Hodges and Nathan M. Swords

Behav. Sci. 2017, 7(1), 15; https://doi.org/10.3390/bs7010015 - 19 Mar 2017

Cited by 12 | Viewed by 7038

Abstract

After establishing a baseline understanding of some of the factors that influence and shape family end of life communication, empirical research centered on the communication tendencies of nationally-recognized palliative care clinicians is presented. Because death is no longer confined to the bedroom and [...] Read more.

After establishing a baseline understanding of some of the factors that influence and shape family end of life communication, empirical research centered on the communication tendencies of nationally-recognized palliative care clinicians is presented. Because death is no longer confined to the bedroom and individuals are increasingly turning to hospitals and health care institutes to assist with end of life, the role of palliative care practitioners is vital. To that end, common communication-rooted issues that may transpire among various medical personnel are explored. Focus on a shared underlying tension—care vs. cure—links the findings between family and palliative care clinician communication regarding end of life. Practical communication solutions and suggestions are offered to facilitate productive and mindful end of life communication between and among family members and health care practitioners. Full article

(This article belongs to the Special Issue Family Communication at the End of Life)

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Open AccessFeature PaperArticle

Cancer Communication and Family Caregiver Quality of Life

by Elaine Wittenberg, Tami Borneman, Marianna Koczywas, Catherine Del Ferraro and Betty Ferrell

Behav. Sci. 2017, 7(1), 12; https://doi.org/10.3390/bs7010012 - 2 Mar 2017

Cited by 46 | Viewed by 12160

Abstract

Family caregivers have enormous communication responsibilities tied to caregiving, such as sharing the patient’s medical history with providers, relaying diagnosis and prognosis to other family members, and making decisions about care with the patient. While caregiver stress and burden has been widely documented [...] Read more.

Family caregivers have enormous communication responsibilities tied to caregiving, such as sharing the patient’s medical history with providers, relaying diagnosis and prognosis to other family members, and making decisions about care with the patient. While caregiver stress and burden has been widely documented in the caregiving literature, little is known about how communication burden, real or perceived communication challenges, impacts caregiver quality of life. In family caregiving, the City of Hope (COH) Quality of Life model proposes that the caregiving experience is reciprocal to the patient experience, impacting physical, social, psychological, and spiritual quality of life. We used data from a pilot study testing a communication coaching call intervention with family caregivers of lung cancer patients to analyze caregiver reported communication burden and quality of life. We found variances in each quality of life domain, suggesting that caregiver interventions should range from self-care skill building for physical care to psycho-educational interventions that support caregiver coping and communication skill building. These findings demonstrate the importance of caregiver assessment and attention to communication burden in quality cancer care. Full article

(This article belongs to the Special Issue Family Communication at the End of Life)

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Review

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679 KiB

Open AccessFeature PaperReview

Still Searching: A Meta-Synthesis of a Good Death from the Bereaved Family Member Perspective

by Kelly E. Tenzek and Rachel Depner

Behav. Sci. 2017, 7(2), 25; https://doi.org/10.3390/bs7020025 - 25 Apr 2017

Cited by 39 | Viewed by 8837

Abstract

The concept of a good death continues to receive attention in end-of-life (EOL) scholarship. We sought to continue this line of inquiry related to a good death by conducting a meta-synthesis of published qualitative research studies that examined a good death from the [...] Read more.

The concept of a good death continues to receive attention in end-of-life (EOL) scholarship. We sought to continue this line of inquiry related to a good death by conducting a meta-synthesis of published qualitative research studies that examined a good death from the bereaved family member’s perspective. Results of the meta-synthesis included 14 articles with 368 participants. Based on analysis, we present a conceptual model called The Opportunity Model for Presence during the EOL Process. The model is framed in socio-cultural factors, and major themes include EOL process engagement with categories of healthcare participants, communication and practical issues. The second theme, (dis)continuity of care, includes categories of place of care, knowledge of family member dying and moment of death. Both of these themes lead to perceptions of either a good or bad death, which influences the bereavement process. We argue the main contribution of the model is the ability to identify moments throughout the interaction where family members can be present to the EOL process. Recommendations for healthcare participants, including patients, family members and clinical care providers are offered to improve the quality of experience throughout the EOL process and limitations of the study are discussed. Full article

(This article belongs to the Special Issue Family Communication at the End of Life)

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Other

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185 KiB

Open AccessFeature PaperConcept Paper

Palliative Care and the Family Caregiver: Trading Mutual Pretense (Empathy) for a Sustained Gaze (Compassion)

by Joy Goldsmith and Sandra L. Ragan

Behav. Sci. 2017, 7(2), 19; https://doi.org/10.3390/bs7020019 - 13 Apr 2017

Cited by 10 | Viewed by 6735

Abstract

In this conceptual piece, we survey the progress of palliative care communication and reflect back on a chapter we wrote a decade ago, which featured the communication concept of mutual pretense, first described by Glaser and Strauss (1965). This work will include an [...] Read more.

In this conceptual piece, we survey the progress of palliative care communication and reflect back on a chapter we wrote a decade ago, which featured the communication concept of mutual pretense, first described by Glaser and Strauss (1965). This work will include an update on family caregivers and their role in cancer caregiving as well as a review of current palliative care communication curriculum available for providers. And finally, we will spotlight the conversation and research going forward on the subject of health literacy for all stakeholders; patients, families, providers, and systems. We feature one family’s story of incurable cancer and end of life to revisit the needs we identified ten years ago, which are still present. Goals for going forward in chronic and terminal illness are suggested in a health care context still too void of palliative care communication resources for providers, patients, and especially family caregivers. Full article

(This article belongs to the Special Issue Family Communication at the End of Life)

188 KiB

Open AccessFeature PaperEssay

Death of an Ex-Spouse: Lessons in Family Communication about Disenfranchised Grief

by Jillian A. Tullis

Behav. Sci. 2017, 7(2), 16; https://doi.org/10.3390/bs7020016 - 24 Mar 2017

Cited by 7 | Viewed by 7371

Abstract

The death of a loved one is an emotional-laden experience, and while grief and mourning rituals are less formal today in many communities, there remain some social norms for individuals to process loss. The death of an ex-family member, such as a former [...] Read more.

The death of a loved one is an emotional-laden experience, and while grief and mourning rituals are less formal today in many communities, there remain some social norms for individuals to process loss. The death of an ex-family member, such as a former spouse, is more complicated and expectations for how to respond are fraught with uncertainty. While grief has been studied and is primarily understood as an individual cognitive process, scholars in sociology and communication are considering the ways in which grief and mourning are social and take place in dialogue with others. This manuscript explores Kenneth Doka’s concept of disenfranchised grief, which is “grief that is experienced when loss cannot be openly acknowledged, socially sanctioned, or publicly mourned” through the author’s experience of the death of her ex-husband. The narrative will recount how the author learned about her ex-husband’s death (via text message), and will challenge definitions of family and family communication about death and grief, particularly the communication strategies used to cope with this unique type of loss. Full article

(This article belongs to the Special Issue Family Communication at the End of Life)

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