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BACKGROUND: To inform clinical practice and policy, it is essential to understand the lived experience of health and social care policies, including restricted visitation policies towards the end of life. AIM: To explore the views and experiences of Twitter social media users who reported that a relative, friend or acquaintance died of COVID-19 without a family member/friend present. DESIGN: Qualitative content analysis of English-language tweets. DATA SOURCES: Twitter data collected 7–20th April 2020. A bespoke software system harvested selected publicly-available tweets from the Twitter application programming interface. After filtering we hand-screened tweets to include only those referring to a relative, friend or acquaintance who died alone of COVID-19. Data were analysed using thematic content analysis. RESULTS: 9328 tweets were hand-screened; 196 were included. Twitter users expressed sadness, despair, hopelessness and anger about their experience and loss. Saying goodbye via video-conferencing technology was viewed ambivalently. Clinicians' presence during a death was little consolation. Anger, frustration and blame were directed at governments' inaction/policies or the public. The sadness of not being able to say goodbye as wished was compounded by lack of social support and disrupted after-death rituals. Users expressed a sense of political neglect/mistreatment alongside calls for action. They also used the platform to reinforce public health messages, express condolences and pay tribute. CONCLUSION: Twitter was used for collective mourning and support and to promote public health messaging. End-of-life care providers should facilitate and optimise contact with loved ones, even when strict visitation policies are necessary, and provide proactive bereavement support.

Background: To inform clinical practice and policy, it is essential to understand the lived experience of health and social care policies, including restricted visitation policies towards the end of life. Aim: To explore the views and experiences of Twitter social media users who reported that a relative, friend or acquaintance died of COVID-19 without a family member/friend present. Design: Qualitative content analysis of English-language tweets. Data sources: Twitter data collected 7–20th April 2020. A bespoke software system harvested selected publicly-available tweets from the Twitter application programming interface. After filtering we hand-screened tweets to include only those referring to a relative, friend or acquaintance who died alone of COVID-19. Data were analysed using thematic content analysis. Results: 9328 tweets were hand-screened; 196 were included. Twitter users expressed sadness, despair, hopelessness and anger about their experience and loss. Saying goodbye via video-conferencing technology was viewed ambivalently. Clinicians' presence during a death was little consolation. Anger, frustration and blame were directed at governments' inaction/policies or the public. The sadness of not being able to say goodbye as wished was compounded by lack of social support and disrupted after-death rituals. Users expressed a sense of political neglect/mistreatment alongside calls for action. They also used the platform to reinforce public health messages, express condolences and pay tribute. Conclusion: Twitter was used for collective mourning and support and to promote public health messaging. End-of-life care providers should facilitate and optimise contact with loved ones, even when strict visitation policies are necessary, and provide proactive bereavement support.

INTRODUCTION: In 2020 England moved to an opt‐out deceased donation law. We aimed to investigate the views of a mixed stakeholder group comprising people with kidney disease, family members and healthcare practitioners towards the change in legislation. We investigated the expected impacts of the new legislation on deceased‐donor and living‐donor transplantation, and views on media campaigns regarding the law change. METHODS: We undertook in‐depth qualitative interviews with people with kidney disease (n = 13), their family members (n = 4) and healthcare practitioners (n = 15). Purposive sampling was used to ensure diversity for patients and healthcare practitioners. Family members were recruited through snowball sampling and posters. Interviews were audio‐recorded and transcribed verbatim. Transcripts were analysed using thematic analysis. RESULTS: Three themes with six subthemes were identified: (i) Expectations of impact (Hopeful patients; Cautious healthcare professionals), (ii) Living‐donor transplantation (Divergent views; Unchanged clinical recommendations), (iii) Media campaigns (Single message; Highlighting recipient benefits). Patients expected the law change would result in more deceased‐donor transplant opportunities. CONCLUSIONS: Clinicians should ensure patients and families are aware of the current evidence regarding the impact of opt‐out consent: expectations of an increased likelihood of receiving a deceased‐donor transplant are not currently supported by the evidence. This may help to prevent a decline in living‐donor transplantation seen in other countries with similar legislation. Media campaigns should include a focus on the impact of organ receipt. PATIENT OR PUBLIC CONTRIBUTION: Two patient representatives from the Kidney Disease Health Integration Team, Primrose Granville and Soumeya Bouacida, contributed to the content and design of the study documents.

Introduction In 2020 England moved to an opt-out deceased donation law. We aimed to investigate the views of a mixed stakeholder group comprising people with kidney disease, family members and healthcare practitioners towards the change in legislation. We investigated the expected impacts of the new legislation on deceased-donor and living-donor transplantation, and views on media campaigns regarding the law change. Methods We undertook in-depth qualitative interviews with people with kidney disease (n = 13), their family members (n = 4) and healthcare practitioners (n = 15). Purposive sampling was used to ensure diversity for patients and healthcare practitioners. Family members were recruited through snowball sampling and posters. Interviews were audio-recorded and transcribed verbatim. Transcripts were analysed using thematic analysis. Results Three themes with six subthemes were identified: (i) Expectations of impact (Hopeful patients; Cautious healthcare professionals), (ii) Living-donor transplantation (Divergent views; Unchanged clinical recommendations), (iii) Media campaigns (Single message; Highlighting recipient benefits). Patients expected the law change would result in more deceased-donor transplant opportunities. Conclusions Clinicians should ensure patients and families are aware of the current evidence regarding the impact of opt-out consent: expectations of an increased likelihood of receiving a deceased-donor transplant are not currently supported by the evidence. This may help to prevent a decline in living-donor transplantation seen in other countries with similar legislation. Media campaigns should include a focus on the impact of organ receipt.

Background The oversight and conduct of a randomised controlled trial involves several stakeholders, including a Trial Steering Committee (TSC), Trial Management Group (TMG), Data Monitoring Committee (DMC), funder, and sponsor. We aimed to examine how the relationships between these stakeholders affect the trial oversight process and its rigour, to inform future revision of Good Clinical Practice guidelines. Methods Using an ethnographic study design, we observed the oversight processes of eight trials and conducted semi-structured interviews with members of the trials' TSCs and TMGs, plus other relevant informants, including sponsors and funders of trials. Data were analysed thematically, and findings triangulated and integrated to give a multi-perspective account of current oversight practices in the UK. Findings Eight TSC and six TMG meetings from eight trials were observed and audio-recorded, and 66 semi-structured interviews conducted with 52 purposively sampled key informants. Five themes are presented: Collaboration within the TMG and role of the CTU; Collaboration and conflict between oversight committees; Priorities; Communication between trial oversight groups; and Power and accountability. There was evidence of collaborative relationships, based on mutual respect, between CTUs, TMGs and TSCs, but also evidence of conflict. Relationships between trial oversight committees were influenced by stakeholders' priorities, both organisational and individual. Good communication following specific, recognised routes played a central role in ensuring relationships were productive and trial oversight efficient. Participants described the possession of power over trials as a shifting political landscape, and there was lack of clarity regarding the roles and accountability of each committee, the sponsor, and funder. Stakeholders' perceptions of their own power over a trial, and the power of others, influenced relationships between those involved in trial oversight. Conclusions Recent developments in trial design ...

Background: The oversight and conduct of a randomised controlled trial involves several stakeholders, including a Trial Steering Committee (TSC), Trial Management Group (TMG), Data Monitoring Committee (DMC), funder, and sponsor. We aimed to examine how the relationships between these stakeholders affect the trial oversight process and its rigour, to inform future revision of Good Clinical Practice guidelines. Methods: Using an ethnographic study design, we observed the oversight processes of eight trials and conducted semi-structured interviews with members of the trials' TSCs and TMGs, plus other relevant informants, including sponsors and funders of trials. Data were analysed thematically, and findings triangulated and integrated to give a multi-perspective account of current oversight practices in the UK. Findings Eight TSC and six TMG meetings from eight trials were observed and audio-recorded, and 66 semistructured interviews conducted with 52 purposively sampled key informants. Five themes are presented: Collaboration within the TMG and role of the CTU; Collaboration and conflict between oversight committees; Priorities; Communication between trial oversight groups; and Power and accountability. There was evidence of collaborative relationships, based on mutual respect, between CTUs, TMGs and TSCs, but also evidence of conflict. Relationships between trial oversight committees were influenced by stakeholders' priorities, both organisational and individual. Good communication following specific, recognised routes played a central role in ensuring relationships were productive and trial oversight efficient. Participants described the possession of power over trials as a shifting political landscape, and there was lack of clarity regarding the roles and accountability of each committee, the sponsor, and funder. Stakeholders' perceptions of their own power over a trial, and the power of others, influenced relationships between those involved in trial oversight. Conclusions: Recent developments in trial design and conduct have been accompanied by changes in roles and relationships between trial oversight groups. Recognising and respecting the value of differing priorities among those involved in running trials is key to successful relationships between committees, funders and sponsors. Clarity regarding appropriate lines of communication, roles, and accountability is needed. We present 10 evidence-based recommendations to inform updates to international trial guidance, particularly the Medical Research Council guidelines

Frontmatter -- Contents -- Foreword: Too Long Too Short / Vonnegut, Mark -- Acknowledgments -- Introduction: The Why, The What, And The How Of The Medical/Health Humanities / Friedman, Lester D. / Wear, Delese / Jones, Therese -- Part I. Disease And Illness -- Chapter 1. Being A Good Story: The Humanities As Therapeutic Practice / Frank, Arthur W. -- Chapter 2. Illuminating The It, Thee, And We Of Disease And Illness: The Metamorphosis And Related Works / Soricelli, Rhonda L. / Flood, David H. -- Chapter 3. "This Weird, Incurable Disease": Competing Diagnoses In The Rhetoric Of Morgellons / Keränen, Lisa -- Chapter 4. My Quest For Health / Wall, Shelley / Sappol, Michael -- Part II. Disability -- Chapter 5. Disability In Two Doctor Stories / Holmes, Martha Stoddard -- Chapter 6. Music And Disability / Straus, Joseph N. -- Chapter 7. American Narrative Films And Disability: An Uneasy History / Norden, Martin F. -- Chapter 8. Standout / Iezzoni, Lisa I. -- Part III. Death And Dying -- Chapter 9. When The Doctor Is Not God: The Impact Of Religion On Medical Decision Making At The End Of Life / Cohn, Felicia -- Chapter 10. Postmodern Death And Dying: A Literary Analysis / Lantos, John / Montello, Martha -- Chapter 11. Second Degree Block: Poem And Commentary / Haddad, Amy -- Part IV. Patient- Professional Relationships -- Chapter 12. Social Studies: The Humanities, Narrative, And The Social Context Of The Patient-Professional Relationship / Garden, Rebecca -- Chapter 13. Humanities And The Medical Home / Hester, Rebecca / Brody, Howard / Clark, Mark -- Chapter 14. Occupational Medicine / Coulehan, Jack -- Part V. The Body -- Chapter 15. The Virtues Of The Imperfect Body / Tong, Rosemarie -- Chapter 16. Seeing Bodies In Pain / Gilman, Sander L. -- Chapter 17. Public Fetuses / Hausman, Bernice L. -- Chapter 18. More Body: A Performance For Five (Or More) Bodies / Case, Gretchen A. -- Part VI. Gender And Sexuality -- Chapter 19. Adult Intake Form / Peterkin, Allan -- Chapter 20. What Is Sex For? Or, The Many Uses Of The Vag / Dreger, Alice -- Chapter 21. "I Always Prefer The Scissors": Isaac Baker Brown And Feminist Histories Of Medicine / Levine-Clark, Marjorie -- Chapter 22. Comics In The Health Humanities: A New Approach To Sex And Gender Education / Squier, Susan M. -- Chapter 23. I Am Gula, Hear Me Roar: On Gender And Medicine / Campo, Rafael -- Part VII. Race And Class -- Chapter 24. Listening As Freedom: Narrative, Health, And Social Justice / DasGupta, Sayantani -- Chapter 25. Race And Mental Health / Metzl, Jonathan M. -- Chapter 26. Law'S Hand In Race, Class, And Health Inequities: On The Humanities And The Social Determinants Of Health / Goldberg, Daniel -- Chapter 27. The Rooms Of Our Souls / Grainger-Monsen, Maren -- Part VIII. Aging -- Chapter 28. "Old Age Isn'T A Battle, It'S A Massacre": Reading Philip Roth'S Everyman / Saxton, Benjamin / Cole, Thomas R. -- Chapter 29. "Do You Remember Me?" Constructions Of Alzheimer'S Disease In Literature And Film / Kaplan, E. Ann -- Chapter 30. Love In The Time Of Dementia / Winakur, Jerald -- Part IX. Mental Illness -- Chapter 31. Narrating Our Sadness, With A Little Help From The Humanities / Lewis, Brad -- Chapter 32. Teaching Narratives Of Mental Illness / Jones, Anne Hudson -- Chapter 33. Community Psychiatry And The Medical Humanities / Rowe, Michael -- Chapter 34. Culpability / Williams, Ian -- Part X. Spirituality And Religion -- Chapter 35. Rites Of Bioethics / Chambers, Tod -- Chapter 36. Health And Humanities: Spirituality And Religion / Selman, Lucy / Barfield, Raymond C. -- Chapter 37. Scientia Mortis And The Ars Moriendi: To The Memory Of Norman / Bishop, Jeffrey P. -- Chapter 38. Meditations Of An Anesthesiologist: Poem And Commentary / Shafer, Audrey -- Part XI. Science And Technology -- Chapter 39. Andromeda'S Futures: A Story Of Humanities, Technology, Science, And Art / Belling, Catherine -- Chapter 40. Knowing And Seeing: Reconstructing Frankenstein / Wolpe, Paul Root -- Chapter 41. A Brief History Of Love: A Rationale For The History Of Epidemics / Kavey, Allison B. -- Chapter 42. Calcedonies / Nisker, Jeff -- Part XII. Health Professions Education -- Chapter 43. Teaching Autism Through Naturalized Narrative Ethics: Closing The Divide Between Bioethics And Medical Humanities / Aultman, Julie M. -- Chapter 44. Courting Discomfort In An Undergraduate Health Humanities Classroom / Lamb, Erin Gentry / Blackie, Michael -- Chapter 45. The Medical Humanities In Medical Education: Toward A Medical Aesthetics Of Resistance / Bleakley, Alan -- Chapter 46. In Defense Of Cheaper Stethoscopes / Baruch, Jay -- References -- Notes On Contributors -- Index