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.
BACKGROUND: In several studies, investigators have successfully used an internet-enabled PAINReportIt tablet to allow patients to report their pain to clinicians in real-time, but it is unknown how acceptable this technology is to patients and caregivers when used in their homes.
OBJECTIVE: The aims of this study were to examine computer use acceptability scores of patients with end-stage cancer in hospice and their caregivers and to compare the scores for differences by age, gender, race, and computer use experience.
INTERVENTION/METHODS: Immediately after using the tablet, 234 hospice patients and 231 caregivers independently completed the Computer Acceptability Scale (maximum scores of 14 for patients and 9 for caregivers).
RESULTS: The mean (SD) Computer Acceptability score was 12.2 (1.9) for patients and 8.5 (0.9) for caregivers. Computer Acceptability scores were significantly associated with age and with previous computer use for both patients and caregivers.
CONCLUSIONS: This technology was highly acceptable to patients and caregivers for reporting pain in real time to their hospice nurses.
IMPLICATIONS FOR PRACTICE: Findings provide encouraging results that are worthy of serious consideration for patients who are in end stages of illness, including older persons and those with minimal computer experience. Increasing availability of technology can provide innovative methods for improving care provided to patients facing significant cancer-related pain even at the end of life.
OBJECTIVES: To examine the effect of mode of survey administration on response rates and response tendencies for the Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey and develop appropriate adjustments.
DESIGN: Survey response data were obtained after sampling and fielding of the CAHPS Hospice Survey in 2015. Sampled caregivers and decedents were randomized to one of three modes: mail only, telephone only, and mixed mode (mail with telephone follow-up). Linear regression analysis was used to examine the effect of mode on individual responses to questions (6 composite measures and 2 global measures that examine hospice quality).
SETTING: U.S. hospice programs (N = 57).
PARTICIPANTS: Primary caregivers of individuals who died in hospice (N = 7,349).
MEASUREMENTS: Outcomes were 8 hospice quality measures (6 composite measures, 2 global measures). Analyses were adjusted for differences in case-mix (e.g., decedent age, payer for hospice care, primary diagnosis, length of final episode of hospice care, respondent age, respondent education, relationship of decedent to caregiver, survey language, and language spoken at home) between hospices.
RESULTS: Response rates were 42.6% for those randomized to mail only, 37.9%, for those randomized to telephone only, and 52.6% for those randomized to mixed mode (P < .001 for difference). There were significant mode effects (P < .05) for 10 of the 24 questions that compose the quality measures, with mail-only respondents being significantly more likely to report better experiences than telephone-only respondents.
CONCLUSION: Unlike results observed in previous mode experiments for hospital CAHPS, hospice primary caregivers tend to respond more negatively by telephone than by mail. Valid comparisons of hospice performance require that reported hospice scores be adjusted for survey mode.
BACKGROUND: Many people receiving palliative care wish to die at home. Often, support from family or friends is key to ensuring that this wish is fulfilled. However, carers report feeling underprepared to undertake this role. This paper describes the process of developing a consensus and evidence based website to provide core information to help people support someone receiving palliative care on the island of Ireland.
METHODS: The project comprised three phases: (1) a review of systematic reviews facilitated the identification of core information needs; (2) content was developed in collaboration with a Virtual Reference Group (VRG) comprising patients, carers and professionals; and, (3) subject experts within the project team worked with a web developer to précis the agreed content and ensure it was in a format that was appropriate for a website. Members of the VRG were then invited to test and approve the website before it was made available to the general public.
RESULTS: Nineteen systematic reviews identified nine consensus areas of core information required by carers; a description of palliative care; prognosis and treatment of the condition; medication and pain management; personal care; specialist equipment; locally available support services; what to do in an emergency; nutrition; and, support for the carer. This information was shared with the VRG and used to develop website content.
CONCLUSIONS: We engaged with service users and professionals to develop an evidence-based website addressing the agreed core information needs of non-professional carers who wish to provide palliative care to a friend or relative.
BACKGROUND: Caring for someone with dementia can be physically and emotionally difficult. Acting as a caregiver can make it difficult to access sources of support, particularly in the later stages of dementia. This paper reports the development and presents the targets (subject areas) and components of a prototype website to support family caregivers of a person with dementia towards the end of life.
METHODS: Adopting an iterative approach and co-production methods the development process consisted of four stages: Stage1-Synthesis of data: three sources of data (interviews, systematic review and theory) were synthesised using tabulation, to identify the targets of the prototype; Stage2-Identifying intervention targets and components: a research development group (health practitioners, a family caregiver and academic experts) met to discuss the development, using a modified nominal group process, refining the synthesis from stage 1; Stage3-Developing the intervention prototype: an outline of the prototype was developed based on stage 1 and 2; and Stage4-User testing: interviews with caregivers testing the prototype website.
RESULTS: Qualitative interviews with caregivers identified four targets for the intervention: 1) feeling prepared and equipped; 2) feeling connected and supported; 3) valuing themselves as a caregiver and as an individual; 4) maintaining control of the caring situation and being the coordinator of care. The systematic review provided evidence on how and what components could address these targets, including providing information, peer support, contact with professionals, and psychological support. Theory helped to narrow the focus within each of these targets. Active discussion with the research development group and end users provided an outline of the prototype website. The prototype website presented addresses these targets with written information, videos from other caregivers, and peer and professional support sections. The subject areas covered included expectations at the end of life, support with day-to-day caring, care planning, and communication.
CONCLUSIONS: This paper provides a detailed account of the development process of a prototype website for caregiver support. The transparent methodology and key lessons learnt from developing the prototype should help those who are developing similar interventions, across complex, progressive conditions and not just limited to dementia.
The paper is a first thorough examination of what happens to one’s emails on death. The paper demonstrates that some content of emails can be protected by copyright and transmitted on death accordingly. The paper then analyzes the contractual provisions of the main email providers, Google and Microsoft, in order to determine how these contracts, regulate the transmission of emails on death. The author finds that these provisions complicate the issues of property and transmission of digital assets and do not offer a meaningful control over the assets for their users. The paper adopts a novel focus introduced in the author’s earlier research, the idea of post-mortem privacy that is the right to privacy after death. This concept serves as an argument against the default transmission of emails on death without the deceased’s consent, whether through the laws of intestacy or by requiring the service providers to provide access to the deceased’s emails. Finally, the paper canvasses a solution which combines law and technology. It is argued that much more control should be placed in the hands of emails users. Post-mortem privacy, a potentially contested phenomenon, only accentuates the need to better account for the interests of the deceased, having in mind the volume of personal data and personal nature of emails. Therefore, an in-service solution is promoted, backed up by policy and legislation.
Online support groups are popular for peer support, particularly for uncommon or stigmatized topics including pregnancy and infant loss. We conducted a randomized, controlled, 6-week feasibility study of three groups: an anonymous BabyCenter.com loss support group, a closed Facebook loss group, or a control group. Intervention arm mothers were asked to sign on to their support sites for 6 weeks. Participants completed regular surveys, text message surveys after each log-in, and a final semistructured phone interview. Thirty women were randomized to each arm of the study. Women reported preference for anonymous groups and found it empowering to support others, although many noted an emotional cost to reading postings. Tracking usage online was a major issue despite multiple strategies to collect these data. This pilot demonstrated feasibility of a randomized trial for online perinatal support but noted a critical need for more reliable methods to track usage.
Background: The lack of consumer knowledge and misconception of services could impede requests for and acceptance of palliative care. YouTube has been widely used for health information dissemination.
Objective: To explore the availability and characteristics of palliative care educational videos on YouTube and determine how palliative care is portrayed in these videos.
Methods: Keyword search and snowball methods were used to identify palliative care videos on YouTube. A structured data collection protocol was developed to record characteristics of a video. Descriptive analysis was used to describe the video features; logistic regression was conducted to determine the association between video characteristics and number of views per day.
Results: A total of 833 videos were screened; 84 met criteria for analysis. The most prominent video styles were providing palliative care information (85%) and personal testimony (50%). One-third were uploaded by hospice/palliative care services or medical organizations, while another one-third by advocacy organizations. More than two-thirds mentioned “end-of-life” and 35% mentioned “hospice.” Physicians most frequently appeared and served as protagonists. Protagonists were primarily female (71.0%), aged 18–64 years (81.7%), and white (90.3%). Compared with videos uploaded by health care agencies, those uploaded by advocacy organizations had 6.41 times higher odds of having more than one view per day (p = 0.002).
Conclusion: Online videos may not provide accurate and appropriate information on palliative care. There is minimal ethnic diversity in terms of physician and family representation. More research is needed to determine the effectiveness of these videos in improving consumer knowledge of palliative care.
As digital outlets of expression become increasingly accessible, means of conveying grief and commemorating the deceased have migrated online. Online memorial websites such as UK-based Muchloved.com boasts thousands of Tributes created by the bereaved to remember the deceased. Many of these Tributes sketch out a rough picture of the person commemorated through text detailing their personal lives, professions, hobbies, and accomplishments, as well as photographs capturing intimate moments with family and community, and condolences contributed by family, friends, and community members. This article examines how stories of migration figure in this large pool of digital Tributes. We draw from Moncur and Kirk’s “emergent framework” for the study of digital memorials by analyzing 17 Tributes on MuchLoved.com, which commemorated individuals who, according to these Tributes, migrated from one nation to another. We find that the practices and conventions of memorial-writing to commemorate first-generation immigrants perpetuate narratives of exceptionality.
Journalism has taken on a new form in the age of new media, allowing anyone to not only report the news, but to provide visual proof of it, uncensored and freely available. When this visual proof began to allow people to see death in its entirety, various communities began to form to not just view these videos but to also ensure their availability and continuation. This essay is about those communities and how they operate.
BACKGROUND: A lack of public awareness of palliative care (PC) has been identified as one of the main barriers to appropriate PC access. Internet search query analysis is a novel methodology, which has been effectively used in surveillance of infectious diseases, and can be used to monitor public awareness of health-related topics.
OBJECTIVES: We aimed to demonstrate the utility of internet search query analysis to evaluate changes in public awareness of PC in the USA between 2005 and 2015.
METHODS: Google Trends provides a referenced score for the popularity of a search term, for defined regions over defined time periods. The popularity of the search term 'palliative care' was measured monthly between 1/1/2005 and 31/12/2015 in the USA and in the UK.
RESULTS: Results were analysed using independent t-tests and joinpoint analysis. The mean monthly popularity of the search term increased between 2008-2009 (p<0.001), 2011-2012 (p<0.001), 2013-2014 (p=0.004) and 2014-2015 (p=0.002) in the USA. Joinpoint analysis was used to evaluate the monthly percentage change (MPC) in the popularity of the search term. In the USA, the MPC increase was 0.6%/month (p<0.05); in the UK the MPC of 0.05% was non-significant.
DISCUSSION: Although internet search query surveillance is a novel methodology, it is freely accessible and has significant potential to monitor health-seeking behaviour among the public. PC is rapidly growing in the USA, and the rapidly increasing public awareness of PC as demonstrated in this study, in comparison with the UK, where PC is relatively well established is encouraging in increasingly ensuring appropriate PC access for all.
OBJECTIVE: To examine how Canadian newspapers portrayed physicians' role and medical assistance in dying (MAiD).
DESIGN: Qualitative textual analysis.
SETTING: Online and print articles from Canadian French and English newspapers.
PARTICIPANTS: 813 newspaper articles published from 1972 to 2016.
RESULTS: Key Canadian events defined five eras. From 1972 to 1990, newspapers portrayed physician's MAiD role as a social issue by reporting supportive public opinion polls and revealing it was already occurring in secret. From 1991 to 1995, newspapers discussed legal aspects of physicians' MAiD role including Rodriguez' Supreme Court of Canada appeal and Federal government Bills. From 1996 to 2004, journalists discussed professional aspects of physicians' MAiD role and the growing split between palliative care and physicians who supported MAiD. They also reported on court cases against Canadian physicians, Dr Kevorkian and suffering patients who could not receive MAiD. From 2005 to 2013, newspapers described political aspects including the tabling of MAiD legislation to change physicians' role. Lastly, from 2014 to 2016, newspapers again portrayed legal aspects of physicians' role as the Supreme Court of Canada was anticipated to legalise MAiD and the Québec government passed its own legislation. Remarkably, newspapers kept attention to MAiD over 44 years before it became legal. Articles generally reflected Canadians' acceptance of MAiD and physicians were typically portrayed as opposing it, but not all did.
CONCLUSIONS: Newspaper portrayals of physicians' MAiD role discussed public opinion, politicians' activities and professional and legal aspects. Portrayals followed the issue-attention cycle through three of five stages: 1) preproblem, 2) alarmed discovery and euphoric enthusiasm and 3) realising the cost of significant progress.
To better understand the role of technology in later-life planning among older lesbian, gay, bisexual, and trans (LGBT) adults, we conducted focus groups to explore factors linked to diverse sexual orientations and gender identities. Twenty focus groups were facilitated across Canada with 93 participants aged 55 to 89. Constant comparative analysis yielded four categories: (a) fear, (b) individual benefits, (d) social elements, and (d) contextual elements. Fear related to technology and fear of end-of-life planning. Individual benefits referred to technology as a platform for developing LGBT identities and as a source of information for later-life planning. Social elements were establishment and maintenance of personal relationships and social support networks. Contextual elements referred to physical and situational barriers to technology use that limited access and usability. These findings can inform technological practice and services to enhance later-life planning.
It is important for the health care community to understand the impact of a child's death on parent functioning. Yet involving bereaved parents in research that enquires about such a stressful time in their life can potentially bring harm to them. The current study examines the perceived benefit and burden of parents participating in a survey exploring their perceptions of their child's end-of-life (EoL) and bereavement experiences. Parents whose child died from cancer or complications of cancer treatment were invited to complete a survey developed by pediatric psychosocial oncology professionals with input from bereaved parent advocates through a closed social media (Facebook) group. One hundred seventy-eight parents of children aged 0 to 37 years at death (median age 12 years) participated. More than three quarters of parents reported at least "a little benefit" and half reported at least "a little burden" associated with participation. Less burden was perceived by younger and female parents, parents of younger children, those who had felt prepared to meet their children's emotional needs at EoL, and those not using bereavement services at the time of the survey. With the increasing use of social media as a source for bereaved parents to receive and provide emotional support, it is important for clinicians and researchers to understand the perceived benefits and risks of participating in research about EoL experiences via online recruitment. Our findings suggest that the benefit and burden of online research participation may vary for bereaved parents, but further research is necessary to replicate the findings and explore ways to optimize the use of this approach.
PURPOSE: Siblings of children and young people diagnosed with cancer are commonly reluctant to talk about their experiences due to the circumstances of the illness situation. This article aims to bring voice to experience and inform practice by investigating what and how three young sisters narrate about their illness experiences in personal blogs on the Internet.
METHODS: A narrative methodology for the analysis of life storytelling was applied primarily to investigate the sister's coping strategies and support needs.
RESULTS: The results show how the sisters constructed their own space for narration, with the main aims of expressing their feelings about the illness and seeking social support. The telling of their experiences along with encouraging comments from a supportive audience enabled a change in position from feeling neglected and silenced to being a recognized agent and caring sister. In addition, through their narrative coping the sisters went from powerless to powerful in their position in relation to cancer.
CONCLUSION: The results highlight the need for siblings to be able to narrate experience in a supportive context, where the processing of their relationship with the ill sister/brother should be understood as an important element of their coping with cancer and death.
BACKGROUND: While several internet interventions target severe prolonged grief symptoms after bereavement, no randomised controlled trial investigated interventions for prolonged grief after separation/divorce.
METHODS: This randomised controlled trial aimed to evaluate the efficacy of a guided internet-based self-help intervention for prolonged grief symptoms after spousal bereavement or separation/divorce compared to a wait-list control group. Furthermore, we analysed whether the intervention was also efficacious for participants with milder grief symptoms.
RESULTS: A total of 110 participants were mainly recruited by newspaper articles. Average age was 51 years, 77% were separated/divorced, 79% were female. Dropout rate was 11%. Compared to the control group, the intervention resulted in significant reductions in grief (d = 0.81), depression (d = 0.59), psychopathological distress (d = 0.39) (primary outcomes), embitterment (d = 0.37), loneliness (d = 0.37) and an increase in life satisfaction (d = -0.41) (secondary outcomes). These gains were maintained over three months. Improvements were similar among widowed and separated/divorced participants as well as among participants with low, medium or high levels of grief at baseline.
LIMITATIONS: Limitations include the self-selective sample and a rather small number of widowed participants.
CONCLUSIONS: Findings indicate that an internet intervention based on models for coping with grief after bereavement was not only beneficial for widowed but also separated or divorced participants. Furthermore, also participants with lower levels of grief at baseline benefitted from the intervention. This corroborates that indicated prevention efforts for grief are efficacious.
Advanced care planning (ACP) and end-of-life discussions are especially difficult among persons living with human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS) as a result of patients' lack of trust in family and providers, HIV-related stigma, misunderstood spirituality concerns, social isolation, and other factors. Previous research has demonstrated that relatively few persons living with HIV/AIDS engage in ACP, yet developing culturally sensitive methods of ACP is imperative. One such method is digital storytelling, a video narrative that can be used to share ideas or aspects of a life story.
The aim of this study was to examine perspectives from providers and persons living with HIV/AIDS about the acceptability, benefits, and technological challenges of and barriers to using digital storytelling for ACP. A qualitative descriptive design was employed using focus groups of 21 participants in South Central Appalachia. Transcribed data were analyzed using qualitative content analysis. Findings revealed patient and provider ideas about ACP, factors related to digital story acceptability, stigma against persons living with HIV/AIDS, and concern for the legality of ACPs expressed in digital story format. Future research should focus on the process of creating digital stories as an intervention to improve ACP in this unique aggregate.