Staying connected: Alzheimer's hashtags and opportunities for engagement and overcoming stigma.

Alzheimer's disease (AD) is a terminal, neurodegenerative disease, and consequently is difficult to communicate about as it is stigmatized, and discussions are rife with misconceptions. By situating AD conversations in the sociocultural space of the opportunity model of presence during the end-of-life process, a framework developed illustrating the potential trajectory from living with illness through death and into bereavement, we examined networked discussions surrounding Alzheimer's related hashtags on Twitter (N = 132,803) between January 1st, 2010, and September 29th, 2021. Using the mixed-method approach of the Analysis of Topic Model Network (ANTMN) framework, results revealed 30 topics clustered into five distinct themes: promotion, education, action, "You aren't alone", and dementia. Results indicated that discussions surrounding World Alzheimer's Day focused on changing stigma and promoting engagement in difficult conversations. The frequency of themes over time remained relatively stable. By understanding how Twitter's online discourse may be used to overcome stigmatized topics, we can continue to tailor messages to reduce stigma and provide support for those who experience similar health issues.

Shouts from the Void: A Mixed-Method Analysis Surrounding the Online Chronic Illness Community, NEISVoid.

Chronic illness affects millions worldwide, rendering the life of those affected complex to manage. Extant research points to the need for effective and supportive care for the successful treatment, yet health care encounters for this population are often filled with negative experiences, ranging from discontinuity of care to disenfranchisement from providers. One such group dedicated to sharing struggles is the NEISVoid (No End In Sight) community on Twitter. Through the use of the hashtag, #NEISVoid, they come together to share what experiences living with chronic illness look like, in vulnerable and potentially unfiltered ways. The present study analyzes the discourse surrounding the hashtag #NEISVoid in tweets published from January 1 2020, until September 1 2022 (N = 450,914 tweets) using the mixed-method analysis of topic model network (ANTMN) approach. We identify and discuss four broad discursive themes: community experiences, symptom management, efficacy solutions, and biomedical health. We analyze this discourse through the chronic care model (CCM) and in light of research on hashtag activism. We discuss practical and theoretical implications for health communicators.

Survivors' perspectives on saying goodbye: Implications for end-of-life engagement across the lifespan and grieving process.

Family members are often unaware of their loved ones' final wishes and underestimate the need to talk about them before parents reach end-of-life (EOL). The benefits of engaging in EOL conversations alleviate needless suffering and can allow an opportunity to say goodbye in a meaningful way. We examined final conversations 13 adults recalled having with their aging parents through the lens of the opportunity model for presence (OMP) during the EOL process, a communication process model based on engagement in the dying process from diagnosis through bereavement, to understand the process from the survivor's perspective, looking at content of conversations and where they occurred in the dying process. Findings illustrate final conversations that align with the socio-cultural space of the OMP before the knowledge that a parent was dying, and when entering imminent death engaging in the critical moments, have implications for the grief and bereavement.

Mediated depictions of mental health, chronic care and literacy: a narrative analysis of Randall's mental health journey in the television series, This is Us.

Introduction: Mental health and delivery of care is a global issue, that was only magnified by COVID-19. Over the past 3 years, people's time spent watching television increased, while the way that mental health care was delivered changed. Audiences can gain insight into mental health issues through positive or negative mediated depictions on television. We argue that mental health is a chronic condition and the importance of literacy through different domains is critical for how the characters in media content and audience viewers make sense of mental health. Method: The current study uses qualitative narrative analysis to examine the narrative probability and fidelity at the intersection of mental health depictions, the chronic care model, and different types of literacy in the award-winning series, This is Us. Results: Findings reveal that Randall's experiences with mental health (N = 38 episodes) depict moments of narrative coherence and fidelity to varying degrees. We see Randall's experiences align most with the self-management support and community elements of the CCM, but the overall depiction is unbalanced. Randall's literacy level is high, but if inspected on a deeper level, analysis points to differing levels of health and mental health literacy, thus enabling and constraining positive and realistic portrayals of mental health. Discussion: Implications for mental health as a chronic issue and care delivery through CCM are discussed along with the importance of different types of literacy for audience members who may be struggling with a mental health disorder or trying to navigate the health care system. We offer recommendations for using Randall's narrative as a teaching tool, integrating CCM into clinical visits to help guide delivery of care and understand literacy levels, and finally future work should continue this line of work from an Entertainment-Education perspective.

This Is Us: An Analysis of Mediated Family Communication at End-of-Life.

Death is a ubiquitous theme in television dramas and we argued that mediated depictions of end-of-life experiences have the potential to provide glimpses into the ways in which characters experience real-life issues and can serve as conversation starters within family viewers. The study aimed to identify how a popular television drama, This is Us, depicted end-of-life communication. Analysis of season one revealed 54 conversations about end-of-life, two explicit death scenes, and three implied death scenes. Results also illustrate how the storyline within the show clearly depicts the impact end-of-life has on the family system, emphasizing the ongoing interdependence, hierarchy, and boundary (re)negotiation as a result of death. Findings advance understanding of how mediated narratives can illustrate end-of-life scenarios and conversations within the family system and can provide observational opportunities for modeling end-of-life communication behaviors within their families.

Clinician Communication in Hospice: Constructions of Reality Throughout the End-of-Life Process.

The current study examined qualitative data from hospice clinicians' perspectives on language, surrounding end-of-life (EOL), to understand challenges and opportunities for constructing a trajectory of communication leading towards a good death experience. Findings from two focus groups with nine clinicians' and 12 individual interviews, four of which were follow up interviews after the focus groups, were guided by framework analysis and revealed three themes, constructing language choices, roles and responsibilities, and socio-cultural considerations. We used the Opportunity Model for Presence during the End-of-Life Process (OMP-EOLP) to make sense of the findings and discuss implications for language use throughout the EOL process. We argue additional efforts should be made in recognizing the value of presence checks, re-constructing advance care planning, and utilizing different forms of media as an educational tool and connection mechanism for clinicians with patients and families to achieve a timely engagement of EOL conversations for all healthcare participants.

Exploring Web-Based Twitter Conversations Surrounding National Healthcare Decisions Day and Advance Care Planning From a Sociocultural Perspective: Computational Mixed Methods Analysis.

BACKGROUND: Within the cultures and societies of the United States, topics related to death and dying continue to be taboo, and as a result, opportunities for presence and engagement during the end of life, which could lead to a good death, are avoided. Several efforts have been made to help people engage in advance care planning (ACP) conversations, including completing advance care directives so that they may express their goals of care if they become too sick to communicate their wishes. A major effort in the United States toward encouraging such challenging discussions is the annual celebration of the National Healthcare Decisions Day. OBJECTIVE: This study aimed to explore ACP from a sociocultural perspective by using Twitter as a communication tool. METHODS: All publicly available tweets published between August 1, 2020, and July 30, 2021 (N=9713) were collected and analyzed using the computational mixed methods Analysis of Topic Model Network approach. RESULTS: The results revealed that conversations driven primarily by laypersons (7107/7410, 95.91% of tweets originated from unverified accounts) surrounded the following three major themes: importance and promotion, surrounding language, and systemic issues. CONCLUSIONS: On the basis of the results, we argue that there is a need for awareness of the barriers that people may face when engaging in ACP conversations, including systemic barriers, literacy levels, misinformation, policies (including Medicare reimbursements), and trust among health care professionals, in the United States. This is incredibly important for clinicians and scholars worldwide to be aware of as we strive to re-envision ACP, so that people are more comfortable engaging in ACP conversations. In terms of the content of tweets, we argue that there is a chasm between the biomedical and biopsychosocial elements of ACP, including patient narratives. If used properly, Twitter conversations and National Health Care Decision Day hashtags could be harnessed to serve as a connecting point among organizations, physicians, patients, and family members to lay the groundwork for the trajectory toward a good death.

Reaching Adolescent and Young Adult Cancer Patients Through Social Media: Impact of the Photographs of Meaning Program.

Purpose: This study assessed the feasibility and preliminary efficacy of the Photographs of Meaning Program for Adolescent and Young Adult cancer patients and survivors (POM-AYA). Methods: POM-AYA is a structured 10-week meaning-based intervention in which participants post photographs and accompanying narratives through a social media platform. Measures of depression, overall quality of life (QoL), and spiritual well-being were assessed on consent (T1), after completing the 10-week intervention (T2) and 2 months' postintervention (T3). Participants also completed a satisfaction questionnaire and follow-up semi-structured interviews. Results: Thirty AYA cancer patients and survivors (ages 17-36) were enrolled in the study. At T2, depressive symptoms were significantly lower and QoL was significantly higher compared with T1. These gains were maintained at T3. There were no significant differences in reported spiritual well-being across the study period. Overall, participants reported high rates of study satisfaction in both the survey and qualitative feedback. Conclusion: POM-AYA appears to be a potentially beneficial, widely accessible intervention in reducing depressive symptoms and increasing QoL in AYA cancer patients and survivors.

The Photographs of Meaning Program for Pediatric Palliative Caregivers and Its Impact on Meaning, Well-Being, and Perceived Social Support.

Background: Caring for a child or adolescent with palliative care needs can significantly influence the physical, mental, financial, and social well-being of caregivers. Due to this multifaceted impact, there is a demand for evidence-based support that meets the distinct needs of this population. Objective: This study aims to evaluate the effect the Photographs of Meaning Program (POM) has on meaning and purpose, well-being, and perceived social support of pediatric palliative caregivers (PPCGs). Design: Over an eight-week period, participants followed a meaning-making curriculum via social media. Following the social media portion of the intervention, a reflection and closure event and a community photograph exhibit were held. Participants completed pre- and post-test measures. Setting/Subjects: Eighteen PPCGs participated in POM. Settings included participant homes, the medical campus of the palliative care program, and a community art gallery. Measurements: Participant meaning and purpose were assessed through the Meaning in Life Questionnaire. The Flourishing Scale measured PPCG well-being, while the Social Provisions Scale assessed perceived social support. Participants were also given a satisfaction survey at study closure. Results: Presence (p = 0.003) and search (p = 0.023) for meaning were both positively impacted at post-test. Participants' ratings of well-being (p = 0.037), overall social support (p = 0.004), areas of attachment (p = 0.003), social integration (p = 0.026), reassurance of worth (p = 0.002), and guidance (p = 0.014) significantly increased from pre- to post-test. Conclusions: POM is an effective social media-based intervention for PPCGs. Future research should assess the effectiveness of this intervention in populations with differing demographics and its effect on other psychosocial indicators.

Expanding the Understanding of Content of End-of-Life Dreams and Visions: A Consensual Qualitative Research Analysis.

Background: Research has established End-of-Life Dreams and Visions (ELDVs) as prevalent, meaningful valid experiences that may help patients cope with illness and approaching death. However, no inductive qualitative analysis has explored the phenomenology of ELDVs from the perspective of hospice homecare patients. Objective: The purpose of this study is to evaluate the content of ELDVs by using a rigorous qualitative approach. Design: Five hundred forty-eight ELDVs were collected from weekly interviews of hospice homecare patients and analyzed by using Consensual Qualitative Research Methodology. Settings/Subject: Participants were enrolled in a county-wide hospice homecare program between January 2013-March 2015. Results: The following domains emerged: (1) Interpersonal, (2) Affective Experience and Reflection, (3) Activities, and (4) Setting/Location. Conclusions: This study suggests that ELDV content may include a broader spectrum of experiences that reflect waking life than previously believed. Clinical implications suggest that it may be important for providers to engage with ELDVs, as they are psychologically significant experiences that may be a source of clinical insight.

Family Caregiver Perspectives on End-of-Life Dreams and Visions during Bereavement: A Mixed Methods Approach.

Background: End-of-life dreams and visions (ELDVs) are prevalent experiences that provide comfort and meaning to dying individuals. Limited research has examined the impact of ELDVs on the bereaved. Objective: This study aimed to explore differences in self-reported grief for people whose loved ones shared ELDVs and those who did not, and to describe the role of ELDVs in the grieving process. Design: Mixed-methods cross-sectional survey. Settings/Subjects: A total of 228 bereaved family caregivers (FCGs) of patients who died while under the care of a comprehensive hospice program were recruited. Measurements: Demographics and ELDV prevalence were collected. Bereavement was assessed using the Core Bereavement Items (CBI) a validated measure. Impact on grief was also evaluated using an ad hoc tool. Results: Comfort from dreams significantly related to total CBI score (r = 0.224, p = 0.047) as well as the images and thoughts (r = 0.258, p = 0.025) and acute separation subscales (r = 0.224, p = 0.047). Comfort from dreams had a positive relationship with accepting the reality of loss (r = -0.511, p < 0.001), working through the pain of grief (r = -0.556, p < 0.001), adjusting to the new environment (r = -0.405, p = 0.001), and continuing bonds (r = -0.538, p < 0.001). CBI scores were not significantly different between caregivers who reported loved ones with ELDVs and others. Open-ended responses were thematically analyzed resulting in three emergent themes: comfort, reflection and emotions, and sense-making. Conclusions: ELDVs' impact extends beyond those experiencing them to bereaved loved ones. Bereaved FCGs report that comforting ELDVs experienced by their dying loved ones influenced their grief process in terms of the Worden's tasks of mourning.

The Experience of Pediatric Palliative Caregiving: A Qualitative Analysis From the Photographs of Meaning Program.

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.

The Photographs of Meaning Program for Pediatric Palliative Caregivers: Feasibility of a Novel Meaning-Making Intervention.

BACKGROUND: Research indicates that informal caregiving can have intense physical and mental impact on the individual. Relative to caregivers of adults, pediatric palliative caregivers appear less in literature despite experiencing greater mental, physical, financial, and social strain. There is limited research on the creation and evaluation of interventions specifically for this population despite clear need. OBJECTIVE: This study aims to evaluate the feasibility and engagement of the Photographs of Meaning Program, a modified meaning-making intervention for pediatric palliative caregivers. DESIGN: Participants completed a pre-post intervention meaning-in-life measure. Over a 9-week period, participants followed a meaning-making curriculum whereby they created and shared photo narratives via social media. As part of the intervention, a community photo exhibition was held featuring these photo narratives. Exit interviews were also conducted at study close. SETTING/PARTICIPANTS: Nine individuals providing informal care to children in a pediatric palliative care program participated in the intervention. All participants were female and are older than 18 years. Settings for research include participant homes and at The Center for Hospice and Palliative Care in Cheektowaga, New York. RESULTS: Participants posted 95 photographs and 96 narratives during the intervention, posting on average once each week. Statistical analysis within the small sample indicated an increased presence of meaning in the lives of participants ( P = .022). Exit interviews conveyed satisfaction with the intervention. CONCLUSIONS: Findings suggest that the Photographs of Meaning Program is a practical intervention with life-enhancing potential for pediatric palliative. Future research should aim to collect additional evidence of the intervention's effectiveness.

End-of-Life in Disney and Pixar Films: An opportunity for Engaging in Difficult Conversation.

This study expanded upon previous scholarship by examining end-of-life (EOL) depictions and messages of death within Disney and Pixar animated films. We argue Disney and Pixar depictions of EOL and death can provide critical opportunities for discussing death and dying processes with children and adults alike. A content analysis of 57 movies resulted in a total of 71 character deaths. These instances of death became the discourse used for analysis. The EOL discourse was coded based on five categories (character status, depiction of death, death status, emotional reaction, and causality). After quantitative analysis, the films were qualitatively analyzed. Four themes emerged from analysis, unrealistic moments, managing EOL, intentions to kill, and transformation and spiritual connection. Discussion of results, limitations, and directions for future research are included.

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

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.

Trusting Social Media as a Source of Health Information: Online Surveys Comparing the United States, Korea, and Hong Kong.

BACKGROUND: The Internet has increasingly become a popular source of health information by connecting individuals with health content, experts, and support. More and more, individuals turn to social media and Internet sites to share health information and experiences. Although online health information seeking occurs worldwide, limited empirical studies exist examining cross-cultural differences in perceptions about user-generated, experience-based information compared to expertise-based information sources. OBJECTIVE: To investigate if cultural variations exist in patterns of online health information seeking, specifically in perceptions of online health information sources. It was hypothesized that Koreans and Hongkongers, compared to Americans, would be more likely to trust and use experience-based knowledge shared in social Internet sites, such as social media and online support groups. Conversely, Americans, compared to Koreans and Hongkongers, would value expertise-based knowledge prepared and approved by doctors or professional health providers more. METHODS: Survey questionnaires were developed in English first and then translated into Korean and Chinese. The back-translation method ensured the standardization of questions. Surveys were administered using a standardized recruitment strategy and data collection methods. RESULTS: A total of 826 participants living in metropolitan areas from the United States (n=301), Korea (n=179), and Hong Kong (n=337) participated in the study. We found significant cultural differences in information processing preferences for online health information. A planned contrast test revealed that Koreans and Hongkongers showed more trust in experience-based health information sources (blogs: t451.50=11.21, P<.001; online support group: t455.71=9.30, P<.001; social networking sites [SNS]: t466.75=11.36, P<.001) and also reported using blogs (t515.31=6.67, P<.001) and SNS (t529.22=4.51, P<.001) more frequently than Americans. Americans showed a stronger preference for using expertise-based information sources (eg, WebMD and CDC) compared to Koreans and Hongkongers (t360.02=3.01, P=.003). Trust in expertise-based information sources was universal, demonstrating no cultural differences (Brown-Forsythe F2,654=1.82, P=.16). Culture also contributed significantly to differences in searching information on behalf of family members (t480.38=5.99, P<.001) as well as to the goals of information searching. CONCLUSIONS: This research found significant cultural differences in information processing preferences for online health information. Further discussion is included regarding effective communication strategies in providing quality health information.

Recognizing Success in the Chaplain Profession: Connecting Perceptions With Practice.

The current investigation examines the communicative hallmarks of successful chaplaincy work as articulated by professional chaplains providing spiritual care at the end-of-life. Data grounded in qualitative interviews with 32 chaplains of various denominations and lengths of service reveals a challenge in gauging success when working with dying patients and families. Chaplains reported nonverbal hallmarks of success consist of (a) intrapersonal sense of accomplishment, (b) progress in fulfilling patient needs, and (c) meaningful connection with patients. Verbal hallmarks of success include (a) patient affirmation, (b) family affirmation, and the (c) chaplain being asked to participate in religious rites. In practice, the authors conjecture, chaplains assess professional competency in the self, patient, and family domains. Implications and future directions are discussed.

Translating spiritual care in the chaplain profession.

Chaplains provide a much-needed service to patients and families requiring spiritual care in the healthcare setting. Despite evidence documenting improvements quality of life for patients using spiritual services, chaplains experience challenges in translating the benefits they provide into concepts understood by patients, team members, and administrators. A qualitative study using interviews with 19 chaplains found that translation problems occur in three main areas: (a) justifying the role to patients and families, (b) determinations of what constitutes a "productive" employee, and (c) effective collaboration with other members of the health care team. This study outlines several strategies used by chaplains to ease the process of translation, as well as some directions for future research.

The chaplain profession from the employer perspective: an analysis of hospice chaplain job advertisements.

Hospitals and hospice organizations who are hiring chaplains to provide spiritual care for terminally ill patients post online job advertisements with specific qualifications and communication skills that applicants should possess. An examination of job advertisements can uncover trends in credentials and responsibilities expected of hospice chaplains. Results of a framework analysis of 71 hospice chaplain job advertisements indicated that 44% of chaplain job advertisements did not require chaplain applicants to have completed clinical pastoral education (CPE) and 41% did not required ordination and/or endorsement from a recognized denomination. Only 37% of hiring organizations required or preferred professional certification. Furthermore, patient support (70%), ambassadorship (54%), team collaboration (52%), and interfaith proficiency (46%) were the communication skills that advertisements tended to emphasize. This article focuses on how the study findings reflect ongoing challenges for the chaplain occupational group on its path to professionalization.