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.
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.
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.
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.
Today every aspect of our life is published and shared online, including grief. The virtual cemeteries and social networks' use could be considered as a new modern mortuary ritual. Starting from the keyword stillbirth, 50 videos published on YouTube since 2008 have been analyzed qualitatively. The videos, 70% published by the mother, with an average length of 5.52 minutes, a mean of 2,429,576 views and 2,563 of comments, follow a sort of script: the second part with black and white photos, background music, and religious references. Could the continuous access to the child's technological grave encourage a complicated grief or be a support, given by the interaction with users, limiting the sense of isolation. The parent shows his or her own conceptions about death and, as a modern baptism, presents the child to the whole society. Videos keep child's memory alive and fuel a process of personalization and tenderness in the user.
BACKGROUND: Women who suffer an out-of-hospital cardiac arrest receive bystander cardiopulmonary resuscitation (CPR) less often than men. Understanding public perceptions of why this occurs is a necessary first step toward equitable application of this potentially life-saving intervention.
METHODS: We conducted a national survey of members of the public using Mechanical Turk, Amazon’s crowdsourcing platform, to determine reasons why women might receive bystander CPR less often than men. Eligible participants were adults (=18 years) located in the United States. Responses were excluded if the participant was not able to define CPR correctly. Participants were asked to answer the following free-text question: “Do you have any ideas on why women may be less likely to receive CPR than men when they collapse in public?” Descriptive statistics were used to define the cohort. The free-text response was coded using open coding, and major themes were identified via classical content analysis.
RESULTS: In total, 548 subjects were surveyed. Mean age was 38.8 years, and 49.8% were female. Participants were geographically distributed as follows: 18.5% West, 9.2% Southwest, 22.0% Midwest, 27.5% Southeast, and 22.9% Northeast. After analysis, 3 major themes were detected for why the public perceives that women receive less bystander CPR. They include the following: (1) sexualization of women's bodies; (2) women are weak and frail and therefore prone to injury; and (3) misperceptions about women in acute medical distress. Overall, 41.9% (227) were trained in CPR while 4.4% reported having provided CPR in a medical emergency.
CONCLUSIONS: Members of the general public perceive fears about inappropriate touching, accusations of sexual assault, and fear of causing injury as inhibiting bystander CPR for women. Educational and policy efforts to address these perceptions may reduce the sex differences in the application of bystander CPR.
BACKGROUND: Little is understood about the different ways patients complete advance directives (ADs), which is most commonly through lawyers and increasingly using websites.
OBJECTIVE: To understand patients' perspectives on different approaches to facilitating AD completion, the value of legal regulation of ADs, and the use of a web-based platform to create an AD.
DESIGN: Semi-structured interviews with patients.
SETTING/PARTICIPANTS: We purposively sampled 25 patients at least 70 years of age or with a chronic disease from 2 internal medicine clinics.
MEASUREMENTS: Interviews focused on experiences and perspectives creating ADs, including facilitation by lawyers, health-care professionals, and websites. Feedback on a website prototype was also obtained. Responses were analyzed with modified grounded theory until thematic saturation was achieved.
RESULTS: Although a majority of participants with ADs had used lawyers, participants were ambivalent about the benefits of lawyer facilitation. Most valued both the medical perspective of a health-care professional and a lawyer's attention to legal requirements for AD validity. Participants had positive impressions of the web platform, but some were concerned about privacy with online storage. Trust emerged as an overarching theme, and participants valued legal regulation of ADs to ensure document authenticity and delivery of preference-concordant care.
CONCLUSION: Efforts to improve documentation of care planning need to address the disparate methods by which participants complete ADs. Creating options that combine the perceived benefits of a legal approach with greater health professional involvement could appeal to participants. Privacy concerns may limit web use by some patients.
Terminal secretions is a common symptom seen in hospice patients. Antimuscarinic drugs are commonly used to treat this symptom despite a lack of supporting data. Wide variability in cost exists among these treatments. Hospice program data were assessed to identify high-use and high-cost medications. An educational intervention (EI) was developed to target one such medication, transdermal scopolamine. The EI focused on efficacy, safety, and actual cost (by unit and total expenditure) for each possible treatment of terminal secretions. Following the EI, drug utilization data was re-evaluated. Prior to the deployment of the EI, total monthly hospice drug costs averaged $91,405 (SD 1,444) with an average drug cost per patient per day of $11.42 (SD 0.54). Monthly costs of drugs frequently employed to treat terminal secretions averaged $7,187.67 (SD 2,253) pre-intervention. Following the EI, monthly drug costs decreased 22.5%, average daily patient drug costs decreased 11.1%, and total anti-secretion costs decreased 28.5% after adjusting for difference in census. Education regarding the use and cost of medications to treat symptoms at end-of-life in hospice patients can be an intervention used to lead to significant cost savings to hospice organizations while maintaining appropriate symptom management for patients. Future interventions to target additional high-cost medications are warranted.
This paper explores how theories of things can create new forms of agency for the dead. It considers how meaning is constructed through the use or translation of our diverse collections and environments online. These memorials and rituals offer a plurality of narratives, experiences and esthetics, which have the potential to give a wider scope for constructing a durable biography after death. The paper draws conceptual links between digital and physical materials and aims to expand interdisciplinary discourse around the way design can create new forms of legacy through rethinking the role of digital things in our lives.
Caring for someone with dementia is one of the most challenging caring roles; however, the demands of the role towards the end of life often mean carers are unable to maintain face-to-face support. The aim of this study was to: (a) Explore the experiences of older (over 65 years) family carers of people with dementia of support towards the end of life; (b) Explore with family carers the role of the internet as a support for them at the end of life. Semi-structured interviews were conducted, with purposive sampling from general practice and research networks to recruit 20 current and former family carers aged 65 and over in England (2016-2017). Interviews were audio-recorded, transcribed, and analysed using thematic analysis. An overarching theme of the "separation of worlds" (the internal caring world and the outside world of society) was identified, with four sub themes: (a) the support role of relationships and social networks; (b) loss as a consequence of caring; (c) reconstruction of life as a carer; and finally; (d) life within and beyond the computer screen. This study demonstrates the complexity of social support at the end of life for family carers depicted in a model of two worlds. The internet can be seen as a viable approach to help carers maintain existing networks, reconstruct networks they have lost or developing new networks to meet their new needs and circumstances as a carer. Future support interventions should focus on a mixed model of technology and human interaction.
BACKGROUND: Electronic health record-based portal tools may help patients engage in advance care planning (ACP). We designed and implemented portal-based ACP tools to enable patients to create a medical durable power of attorney (MDPOA).
MEASURES: MDPOA documentation and System Usability Scale were assessed.
INTERVENTION: Stakeholder-informed portal-based ACP tools include an electronic MDPOA form, patient educational webpage, online messaging, and patient access to completed advance directives.
OUTCOMES: A total of 2814 patients used the tools over 15 months. Patients had a mean age 45 years (17-98 years) and 69% were women. Eighty-nine percent completed an MDPOA form, 2% called or sent online messages, and 8% viewed the MDPOA form but did not complete it. The tools were rated highly usable.
CONCLUSIONS/LESSONS LEARNED: Patients demonstrated willingness to use the portal to complete an MDPOA and rated the new ACP tools as highly usable. Future work will optimize population-based outreach strategies to engage patients in ACP through the portal.
Vouloir laisser une trace est un désir quasiment universel chez l'être humain. Certains hommes continuent d'exister à travers leurs oeuvres des siècles après leur disparition. C'était le cas des artistes, et maintenant grâce au numérique, tout un chacun peut aussi laisser des traces de son passage sur Terre. Or si une protection existe déjà en droit d'auteur, le droit du numérique est encore en phase d'évolution concernant le devenir des données personnelles après le décès.
According to some specialists, ceremonial funeral practices are inclined to disappear, particularly as death is an object of repression in contemporary society. However, it seems that new forms of rituals are developing through modern technologies. Virtual tombs, memorial webpages, and the celebration of death anniversaries are now common currency on the Internet. Nonetheless, the overexposure favored by the Web seems to question traditional ways of "living out" one's grief, subjecting the living and the dead to a redefinition of concepts of time and space, and entailing new forms of interaction.
BACKGROUND: A national Do Not Attempt Cardiopulmonary Resuscitation policy was rolled out for the National Health Service in Wales in 2015. A national steering group led on producing information videos and a website for patients, carers and healthcare professionals, forming part of a quality improvement program. Videos were planned, scripted and produced with healthcare professionals and patient/carer representatives, and were completed with both English and Welsh language versions. The TalkCPR videos encourage and promote open discussion about Cardiopulmonary Resuscitation (CPR) and DNACPR in palliative care situations.
METHODS: We worked with patient/carer groups to evaluate whether video resources to convey the salient facts involved in CPR and DNACPR decisions for people with palliative and life-limiting illness were acceptable or not. We conducted a mixed-method design service review in five phases to evaluate whether this technological resource could help. After creating video and website materials, they were evaluated by doctors, nurses and a patient/carer group. We also sent out one lightweight TalkCPR video media pad to each practice in Wales. These rechargeable electronic video media pads had communication videos pre-loaded for easy viewing, especially in areas with poor roaming data coverage.
RESULTS: Videos were demonstrably acceptable to both patient and carer groups, and improved healthcare professional confidence and understanding. Videos went live on the TalkCPR website, in all Welsh Health Boards and on Youtube, and are now used in routine practice throughout Wales.
CONCLUSION: This is the first time that DNACPR information videos are aimed directly at palliative care patients and carers, to explore this sensitive subject with them, and to encourage them to approach their doctor or nurse about it. The website, app and video media pads were developed by patients, the Digital Legacy Association, Welsh NHS IT services, Welsh Government, the Bevan Commission and the Dying Matters Charity in Wales 'Byw Nawr'. The GMC, the Royal College of General Practitioners and NICE have listed TalkCPR as a learning resource. There has also been a collaboration with Falmouth University Art College, who helped produce graphic designs to facilitate and encourage discussions about CPR and end of life care.
Background: Bereavement can be considered a potentially traumatic experience, and concerns have been raised about conducting grief research responsibly online.
Objective: Given that online research introduces new methodological opportunities and challenges, we aimed to develop a greater understanding of how bereaved individuals experience participation in online research.
Method: One day after participation in an online grief study, 876 participants, bereaved on average for 40 months, received a 'check-in' email to support well-being and offer further contact if needed. Although not explicitly asked to respond if no help was needed, 300 participants sent email replies, with only six requesting support. These responses were analysed qualitatively using content analysis.
Results: Results suggested that participants found it acceptable to be asked about their grief and while difficult emotions were frequently described in response to the questionnaires, these reactions were temporary. A range of positive reactions was also reported, including new realizations arising from completing the research and changes in thinking related to grief. Participants also wrote about their appreciation for the study and how it was carried out, as well as a desire to contribute more to the study and to help others in a similar position.
Conclusions: We suggest that the use of the check-in email to support well-being following study completion, along with advice on preparing to take part, contributed to positive experiences of participation and we recommend these strategies for future studies. These findings could allay clinical concerns about conducting online research with vulnerable populations, as well as raising questions about the possible therapeutic impact of measurement.
CONTEXT: Advance care planning (ACP) engagement includes a wide range of behaviors and actions related to discussions and documentation, yet few ACP intervention studies measure the full process.
OBJECTIVES: To compare the effects of an easy-to-read advance directive (AD) versus an ACP website plus the AD (PREPARE+AD) on behavior change processes and actions, including discussions and documentation.
METHODS: Secondary data were from a completed ACP trial. Participants were primary care patients, =60 years old, with =2 co-morbidities. We used the validated ACP Engagement Survey to examine 6-month change in subscales measuring Behavior Change Processes (knowledge, contemplation, self-efficacy, readiness) and Actions (decision makers, quality of life, flexibility for decision makers, asking clinicians questions), and specifically related to discussions and documentation. We used adjusted mixed effects linear models to compare mean change and engagement over time.
RESULTS: Compared to the AD-only, PREPARE+AD resulted in greater increases in all Behavior Change Processes subscales and Actions related to decision makers, quality of life, and flexibility (all p-values=0.005). Both interventions significantly increased the proportion of participants who engaged in ACP discussions (PREPARE+AD, 99.5%; AD-only, 93.3%) and documentation (PREPARE+AD, 99.5%; AD-only, 90.4%), with greater increases for PREPARE+AD (all p-values<0.001).
CONCLUSION: Both PREPARE plus an easy-to-read AD and an AD-only markedly increased ACP engagement in a full range of ACP behaviors, including discussions and documentation, and engagement was nearly 100% with PREPARE+AD. Future ACP studies should examine a full range of ACP behaviors beyond ADs and the impact of PREPARE and easy-to-read AD implementation on healthcare systems.
INTRODUCTION: Internet-based social networks are used by nurses with different purposes, including the creation of working groups and to share and create knowledge.
PURPOSE: To evaluate the utility of social networks in the dissemination of an online questionnaire and to measure Spanish RNs' knowledge about palliative care.
METHODS: A descriptive cross-sectional study was carried out. Using social networks we distributed an online questionnaire with the Spanish version of Palliative Care Quiz for Nurses (PCQN-SV) throughout August 2015.
RESULTS: A direct relationship between the number of responses and the questionnaire's apparitions in each social network was found. Comparing the results obtained by the 446 RNs participating in this study with those obtained in the study to pilot the PCQN-SV we identify that differences found are related to the participants' features (years of experience and hours of training in palliative care) and not to the type of questionnaire they answered.
CONCLUSIONS: Social networks have shown to be a useful tool for nursing research by its ability, to recruit participants as well as to collect data, so their role as an instrument of research should be considered.