Alongside increasing rates of dementia diagnoses worldwide, efforts to seek alternative end-of-life options also increase. While the concept of assisted dying remains controversial, the discussion around its provision for people with dementia raises even more sensitivity. In this study, we explored how the practice of assisted dying for people with dementia is conceptualized and understood using the shared narratives of online contributors. An observational netnography over 20 months was carried out within five open Facebook communities. Thematic analysis was conducted on 1,007 online comments about assisted dying and dementia. Results reflected four central themes and five subthemes: understanding dementia; understanding assisted dying laws; caregivers’ feelings; and moral/personal dilemmas. Findings reveal that the majority of communities’ contributors fear developing dementia. They support the provision of advance euthanasia directives—written by competent patients—to prevent unnecessary suffering, and protect patients’ wishes and freedom of choice when decision-making competency is lost.
Palliative care is a specialized service with proven efficacy in improving patients' quality-of-life. Nevertheless, lack of awareness and misunderstanding limits its adoption. Research is urgently needed to understand the determinants (e.g., knowledge) related to its adoption. Traditionally, these determinants are measured with questionnaires. In this study, we explored Twitter to reveal these determinants guided by the Integrated Behavioral Model. A secondary goal is to assess the feasibility of extracting user demographics from Twitter data-a significant shortcoming in existing studies that limits our ability to explore more fine-grained research questions (e.g., gender difference). Thus, we collected, preprocessed, and geocoded palliative care-related tweets from 2013 to 2019 and then built classifiers to: 1) categorize tweets into promotional vs. consumer discussions, and 2) extract user gender. Using topic modeling, we explored whether the topics learned from tweets are comparable to responses of palliative care-related questions in the Health Information National Trends Survey.
In times like these, appreciating the essential nature of palliative and end-of-life care is perhaps more critical than ever. At the time of writing, more than 2.8 million confirmed cases and nearly 200 thousand deaths associated with the novel coronavirus (COVID-19) have been reported to the World Health Organization. Undoubtedly, many more cases are not yet accounted for due to worldwide limitations in testing capacity and reporting criteria. Deaths due to the virus are also likely under-counted as these data are largely arising from acute hospitals. The number of COVID-19 related deaths in community settings are much less clear. As a global pandemic, COVID-19 presents unprecedented challenges both collectively for governments, communities and health services; as well as individually, for patients, family members, and clinicians directly providing palliative care in this rapidly evolving context.
BACKGROUND: The significance of metaphors for the experience of cancer has been the topic of extensive previous research, with "Battle" and "Journey" metaphors standing out as key. Adaptation to the patient's use of metaphor is generally believed to be an important aspect of person-centered care, especially in palliative care. The aim of this study was to investigate the use of metaphors in blogs written in Swedish by people living with advanced cancer and explore possible patterns associated with individuals, age and gender.
METHODS: The study is based on a dataset totaling 2,602,479 words produced some time during the period 2007-2016 by 27 individuals diagnosed with advanced cancer. Both qualitative and quantitative procedures were used, and the findings are represented as raw frequencies as well as normalized frequencies per 10,000 words. Our general approach was exploratory and descriptive. The Mann-Whitney U test was used to analyze statistical significance.
RESULTS: Our results confirm the strong foothold of "Journey" and "Battle" metaphors. "Imprisonment" and "Burden" metaphors were also used by the majority of the individuals. The propensity to use metaphors when describing the cancer experience was found to differ extensively across the individuals. However, individuals were not found to opt for one conceptualization over the other but tended to draw on several different metaphor domains when conceptualizing their experience. Socio-demographic factors such as age or gender were not found to be strong predictors of metaphor choice in this limited study.
CONCLUSIONS: Using a range of different metaphors allows individuals with advanced cancer to highlight different aspects of their experience. The presence of metaphors associated with "Journey", "Battle", "Imprisonment" and "Burden" across individuals could be explained by the fact that the bloggers are part of a culturally consistent cohort, despite variations in age, sex and cancer form. Awareness of metaphors commonly used by patients can enhance health professionals' capacity to identify metaphorical patterns and develop a common language grounded in the patients' own metaphor use, which is an important requisite for person-centered palliative care.
Background: Until recently, consumers have had limited resources to assess quality of hospices agencies, contributing to growing numbers of consumers turning to online review sites, such as Yelp. However, little is known about the content of hospice Yelp reviews and how these relate to recently available Center for Medicare and Medicaid Services' Hospice Compare (HC) site data.
Objective: To better understand what consumers report on Yelp about hospice care and explore how these areas relate to HC data.
Design: We examined 692 consumer Yelp reviews of 67 hospices in California and compared identified themes with quality measures presented on the HC site.
Setting/Subjects: We used a purposive sample of California Hospice's with Yelp reviews.
Measurements: Qualitative consumer comments about their experience with hospice care were analyzed by using a grounded theory approach.
Results: We found that overall Yelp comments were positive, however Yelp themes were more extensive and diverse than those on HC.
Conclusion: We recommend that consumers consider both HC and online review sites such as Yelp when evaluating a hospice.
Les médias sociaux sont aujourd’hui incontournables dans nos vies. En France, ils entrent doucement dans nos vies professionnelles. Grâce à eux, il est possible d’informer, de s’informer, de prendre conseil auprès de ses pairs rapidement. Ils offrent aussi un moyen de soutien supplémentaire pour les patients et leurs proches. Cet article vise à dépeindre les différents usages que permettent les médias sociaux dans le monde de soins palliatifs. À l’aide de plusieurs exemples, nous montrerons comment les médias sociaux sont utilisés pour communiquer sur les sujets, parfois complexes, de la fin de vie. Nous décrirons également les usages pratiqués dans d’autres milieux professionnels et outre-Atlantique afin d’envisager comment les médias sociaux pourraient être utilisés dans le milieu des soins palliatifs à l’avenir.
Le dossier contient les articles suivants : documentation, diffusion et recherche : des objectifs pour la revue ; les documentalistes comme partenaire dans la prise en charge des patients en fin de vie ; documentation et soins palliatifs : état des lieux de l’existant ; le thésaurus, un vocabulaire contrôlé pour parler le même langage ;
la recherche documentaire en soins palliatifs ; les médias sociaux : le monde est au bout de nos doigts ; la littérature scientifique française en soins palliatifs : cartographie bibliographique ; Palli@Doc : un point d’entrée unique à l’information en soins palliatifs ; la littérature de jeunesse au service de l’enfant hospitalisé ; se documenter, une ressource essentielle de praticien réflexif ; l’implication des documentalistes dans la recherche documentaire en soins palliatifs.
Tiré du blog Tumblr "The last Message Received", créé par une adolescente de 16 ans, Emily Trunko, ce livre est "dédié à toutes les personnes qui, un jour, ont reçu un dernier message". Dans son introduction, Emily Trunko explique que le recueil de ces "derniers messages", messages de rupture amoureuse ou amicale pour certains, ou dernier message de cette "conversation légère dont tu ignores qu'elle précède une mort soudaine", a permis de fédérer une véritable communauté. Chaque dernier message choisi est accompagné de quelques lignes écrites par le destinataire, qui en retrace les circonstances.
Qu'il s'agisse de surmonter un deuil ou de prévenir un acte suicidaire, ce florilège de messages choisis ne laisse pas insensible et fait réfléchir à la portée de nos écrits. "Et si ce message était les derniers mots que mon destinataire lirait de moi ?" résonne alors comme un leitmotiv, une invitation à être plus prévenant et plus conscient des autres avant cet acte banal : cliquer sur "envoyer".
Technology is changing many aspects of our daily lives including how we share our experiences. While there have been many advances in technology to sustain life, it has also led to changes in how we die. This study utilized publicly available online narratives (vlog postings) written by individuals diagnosed with a terminal illness to explore themes on what dying individuals wished to say about their experiences (n = 39). While the content of the messages varied, universally all postings provided advice for living a good life. The implications of these narratives are still unknown. Questions remain about the role online peer support plays in the dying process and the extent to which sharing one’s digital story can affect others online. The act of being introspective at the end of life and the desire for social connection is similar to other forms of social work intervention such as dignity therapy suggesting an opportunity for further exploration. Additionally, these end-of-life narratives could also serve as a tool for educating future social work professionals about the experiences of those diagnosed with a terminal illness.
This special issue entitled “Futures of Digital Death: Mobilities of Loss and Commemoration” explores the topic of digital death and how technologies are reconfigured by and reconfiguring social relationships with the deceased and dying loved ones as well as the larger ecosystem supporting such relationships. This Introduction article starts with an overview of the past research on digital death intended to provide a relevant context for the five papers included in this issue. Then, we reflect on how the current papers, or the present research, build on the past and can be used to address existing gaps and to inform future new research directions in order to move the field forward.
Background: Motor neurone disease is a terminal neurological illness with no known cure. It is often referred to as a ‘family disease’ with the ripples causing additional implications for children and young people. As such, little is known about how to best support young people (24 years old and under) (WHO, 2019)) when a family member dies from the disease. One potential solution is through use of a digital legacy whereby videos which document a person’s life, memories and achievements are purposefully recorded by an adult during their illness. However, due to this being an emerging area of research, little is known about whether a digital legacy may support or hinder bereavement for young people affected by the disease.
Aim: To investigate healthcare professionals, specialists and experts views, perceptions and experiences of using digital legacies with bereaved young people due to motor neurone disease.
Design: A qualitative study underpinned by interpretative phenomenological analysis.
Setting/participants: Twenty healthcare professionals, specialists and experts were recruited using a maximum purposive sampling method. Open-ended interviews were conducted in participants’ place of work either over the telephone or by the lead researcher. Ethical approval was granted by a university ethics committee and Health Research Authority (HRA).
Findings: Two key overarching themes were identified from the data: perceived benefit and value for bereaved young people using a digital legacy and challenges and barriers for bereaved young people using a digital legacy.
Conclusion: A number of potential challenges and considerations were identified. However, the use of a digital legacy was perceived to be a feasible and valuable method of support for young people bereaved as a result of motor neurone disease.
PURPOSE OF REVIEW: Family caregivers of patients with cancer often spend a great deal of effort on physically and emotionally demanding work while taking care of patients. However, the majority of caregivers are not properly equipped for their role as caregivers, which may lead to increased distress in both caregivers and patients. Herein, we reviewed the recent literature (last 3 years) examining online interventions that seek to support caregiver resilience and decrease distress.
RECENT FINDINGS: Our search identified interventions involving three main themes: informational support, positive activities, and social support. These are mostly in the form of web-based tools and mobile apps targeting both usability and quality of life. Social network services are also considered in this review as a new environment for caregivers to connect with other individuals with lived experience in similar circumstances.
SUMMARY: Existing studies on online interventions to support caregivers is still at a formative development stage and pilot tests of feasibility, rather than a substantive body of randomized controlled trials to assess the impact in different user populations, or to determine specific factors that impact caregiver distress level or resilience. More research is needed to further assess the long-term effects of online interventions on caregiver stress and resilience. Also, the role of different types of social network services and new forms of interaction, such as conversational agents, has not yet been fully investigated in caregiver populations. Future research should strive to seek new modes of providing services that may present novel opportunities to enhance caregiver resilience and reduce distress.
OBJECTIVES: (1) To develop an understanding of how social capital may be conceptualised within the context of end-of-life care and how it can influence outcomes for people with dementia and their families with specific reference to the context and mechanisms that explain observed outcomes. (2) To produce guidance for healthcare systems and researchers to better structure and design a public health approach to end-of-life care for people with dementia.
DESIGN: A realist review.
DATA SOURCES: MEDLINE, EMBASE, CINAHL and grey literature.
ANALYSIS: We conceptualised social capital as a complex intervention and, in order to understand how change is generated, used realist evaluation methods to create different configurations of context, mechanism and outcomes. We conducted an iterative search focusing on social capital, social networks and end-of-life care in dementia. All study designs and outcomes were screened and analysed to elicit explanations for a range of outcomes identified. Explanations were consolidated into an overarching programme theory that drew on substantive theory from the social sciences and a public health approach to palliative care.
RESULTS: We identified 118 articles from 16 countries ranging from 1992 to 2018. A total of 40 context-mechanism-outcome configurations help explain how social capital may influence end-of-life care for people with dementia. Such influence was identified within five key areas. These included: (1) socially orientating a person with dementia following diagnosis; (2) transitions in the physical environment of care; (3) how the caregiving experience is viewed by those directly involved with it; (4) transition of a person with dementia into the fourth age; (5) the decision making processes underpinning such processes.
CONCLUSION: This review contributes to the dispassionate understanding of how complex systems such as community and social capital might be viewed as a tool to improve end-of-life care for people with dementia.
The Photographs of Meaning Program for pediatric palliative caregivers (POM-PPCG) is an innovative, meaning-based intervention utilizing photovoice and social media components. In 2017, 9 pediatric palliative caregivers participated in this intervention. During the social media portion of the POM-PPCG, participants were presented with weekly themes based on a meaning-making curriculum. In response, they took photographs, applied either audio or typed narratives, and shared them via social media. Ninety-five photographs with narratives were produced during the intervention. Through thematic qualitative analysis with consensual qualitative research components, 5 themes were identified: Love, Challenges, Loss, Coping, and The New Normal. This study adds to existing literature by shedding light on the experiences of caregivers of children with palliative care needs. Findings from this research contribute not only to the innovative use of qualitative methods but also to the clinical knowledge and practice regarding the pediatric palliative caregiver experience.
In recent years, the common and mundane dying has begun to take place in the public space of the Internet. Among the blogs about food, fashion, travel, and other joyful aspects of life, blogs about severe disease and dying have appeared. The aim of this article is to describe some characteristic features of a sample of cancer blogs and to discuss them in the light of Zygmunt Bauman’s theory of the rationalization of death in modernity and theories about networked media, especially the theories about “affective labor” and “ambient intimacy” by McCosker, Darcy, and Pfister. It will then be argued that an affective communication is performed in and through these cancer blogs, where not only language but also the deficiencies of language—and what is called shared ineffability—might be valuable and meaningful (although not unproblematic) as part of a late modern approach to death, and in the practicing of the art of dying.
The new technologies have changed the rituals related to death: Creation of memorial webpages and of virtual tombs, celebration of death anniversaries are now common currency on the Internet. In spite of their disappearance among the living, the deceased continue to exist on the Web. They still receive messages from their relatives but also from strangers and are at the heart of discussions, prolonging their presence. New technologies have led to a new concept of time and of “where life ends.” Through the analysis of Facebook’s accounts devoted to Turkish martyrs, this article aimed to describe the new funeral rituals seen on the Internet.
This article uses grounded theory methodology to analyze in-depth interviews conducted with mourners who used social networking sites during bereavement. The social media mourning (SMM) model outlines how social networking sites are used to grieve using one or more of the following: (a) one-way communication, (b) two-way communication, and (c) immortality communication. The model indicates causal conditions of SMM: (a) sharing information with family or friends and (sometimes) beginning a dialog, (b) discussing death with others mourning, (c) discussing death with a broader mourning community, and (d) commemorating and continuing connection to the deceased. The article includes actions and consequences associated with SMM and suggests several ways in which SMM changes or influences the bereavement process.
CONTEXT: End-of-life (EOL) communication is a complex process involving the whole family and multiple care providers. Applications of analysis techniques that account for communication beyond the patient and patient/provider will improve clinical understanding of EOL communication.
OBJECTIVES: The objectives of the study were to introduce the use of social network analysis to EOL communication data and to provide an example of applying social network analysis to home hospice interactions.
METHODS: We provide a description of social network analysis to model communication patterns during home hospice nursing visits. We describe three social network attributes (i.e., magnitude, directionality, and reciprocity) in the expression of positive emotion among hospice nurses, family caregivers, and hospice cancer patients. Differences in communication structure by primary family caregiver across gender and time were also examined.
RESULTS: Magnitude (frequency) in the expression of positive emotion occurred most often between nurses and caregivers or between nurses and patients. Female caregivers directed more positive emotion to nurses, and nurses directed more positive emotion to other family caregivers when the primary family caregiver was male. Reciprocity (mutuality) in positive emotion declined toward day of death but increased on day of actual patient death. There was a variation in reciprocity by the type of positive emotion expressed.
CONCLUSION: Our example demonstrates that social network analysis can be used to better understand the process of EOL communication. Social network analysis can be expanded to other areas of EOL research, such as EOL decision making and health care teamwork.
Illness blogs have been used by many individuals to describe their experiences, share knowledge, and gather support. The purpose of this study was to identify needs, concerns, and advice from the blogs of caregivers caring for a person with dementia at the end of life (EOL). A qualitative thematic analysis was performed of 192 blog postings from six dementia family caregivers during the EOL. A Google search using a systematic identification method was followed. Caregivers were females caring for mothers (n = 5) and husbands (n = 1). Themes varied by EOL stage within the contextual environment of Grief/Loss, Family, and Spirituality. Pre-death themes were Care Transitions and Quality; dying were Physical and Emotional Aspects; and post-death were Relief and Remembering. Four additional themes transitioned across stages: Decision-Making, Health Care Providers, Advice, and Caregiver Support. Findings suggest caregiver needs, concerns, and advice vary by EOL stage. Implications for tailored interventions should be considered.