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The authors report on ancient DNA data from two human skeletons buried within the chancel of the 1608–1616 church at the North American colonial settlement of Jamestown, Virginia. Available archaeological, osteological and documentary evidence suggest that these individuals are Sir Ferdinando Wenman and Captain William West, kinsmen of the colony's first Governor, Thomas West, Third Baron De La Warr. Genomic analyses of the skeletons identify unexpected maternal relatedness as both carried the mitochondrial haplogroup H10e. In this unusual case, aDNA prompted further historical research that led to the discovery of illegitimacy in the West family, an aspect of identity omitted, likely intentionally, from genealogical records.
With persistent incidence, incomplete vaccination rates, confounding respiratory illnesses, and few therapeutic interventions available, COVID-19 continues to be a burden on the pediatric population. During a surge, it is difficult for hospitals to direct limited healthcare resources effectively. While the overwhelming majority of pediatric infections are mild, there have been life-threatening exceptions that illuminated the need to proactively identify pediatric patients at risk of severe COVID-19 and other respiratory infectious diseases. However, a nationwide capability for developing validated computational tools to identify pediatric patients at risk using real-world data does not exist.
Methods:
HHS ASPR BARDA sought, through the power of competition in a challenge, to create computational models to address two clinically important questions using the National COVID Cohort Collaborative: (1) Of pediatric patients who test positive for COVID-19 in an outpatient setting, who are at risk for hospitalization? (2) Of pediatric patients who test positive for COVID-19 and are hospitalized, who are at risk for needing mechanical ventilation or cardiovascular interventions?
Results:
This challenge was the first, multi-agency, coordinated computational challenge carried out by the federal government as a response to a public health emergency. Fifty-five computational models were evaluated across both tasks and two winners and three honorable mentions were selected.
Conclusion:
This challenge serves as a framework for how the government, research communities, and large data repositories can be brought together to source solutions when resources are strapped during a pandemic.
Narrative medicine is a growing field of research and teaching. It arises from an interdisciplinary interest in person-centered medicine and is regarded as a major innovation in the medical humanities. This anthology is the first of its kind which integrates chapters on legitimizing narrative medicine in education, practice and research on analyzing types of patient narratives and on studying interventions applying vulnerable or shared reading, creative writing, or Socratic dialogue as a means of rehabilitation and mental care. In her foreword, Rita Charon, who originally coined the term 'narrative medicine' recognizes this expansion of the field and name it 'system narrative medicine'.
In Chapter 6, we first review ideas about how illness disrupts ongoing narratives and how narrative reorganization is required to make sense of illness. We touch on the role of communicating suffering through narrative and how listening to narratives allows healthcare professionals to take the perspective of service users. We then discuss proposals that constructing adaptive narrative identity may be essential in psychotherapy. Following this, we review studies demonstrating that individuals with psychopathology construct their narrative identity with less agency, communion, and positive meaning and that these same features are related to lower well-being. We outline possible relations between trauma, narrative identity, and psychopathology. Finally, we describe relevant studies of first-person perspectives on mental illness and explain how previous research relates to our life story analyses.
In Chapter 5, we present the defining characteristics of narrative, including temporal organization, protagonists pursuing goals, the landscapes of action and consciousness, and meaning as emerging from configuration of events. We argue that experience takes on certain of these defining features (lived story) and that telling stories is anchored in while also transforming lived story. We introduce narrative as crucial to identity since it supports self-continuity by organizing past, present, and future selves into coherent patterns. Further, we describe the memory, imagination, and reflection processes involved in the creation of narrative identity. Finally, we locate narrative identity in social and cultural contexts by introducing the concept of narrative ecology, which includes stories shared by others (vicarious stories), social scaffolding of storytelling, culturally shared stories, such as autobiographies, and master narratives. We discuss how a negative narrative ecology may play a role in shaping narrative identity in some individuals with psychopathology, including negative master narratives of mental illness, inaccurate stereotypes, silencing, absent or hostile coauthors, and lack of adaptive vicarious life stories.
In Chapter 14, we propose a framework for understanding the interplay between narrative identity, mental illness, and personal recovery. First, narrative identity may constitute a vulnerability to mental illness. If individuals grow up in a narrative ecology characterized by silencing, hostile coauthors, and/or maladaptive vicarious stories, they may struggle to narrate negative events in ways that support a positive view of themselves and others. When encountering stressful events, such vulnerable narrative identities may trigger symptoms in some individuals. Second, narrative identity is affected by psychopathology. Mental illness may disrupt the ongoing life story and give birth to the ill self, the negative self, and the self as different. Simultaneously, individuals may feel that they have lost their previous selves and the projected future becomes uncertain and bleak. Certain healthcare practices and negative master narratives may magnify this toxic change in narrative identity. Third, individuals may work with narrative identity to recover from the damage done by mental illness and negative narrative ecologies. We suggest that such narrative repair addresses the narrative identity costs presented in our analyses (e.g., fear of the ill self and the negative self) and boosts narrative identity resources (e.g., the growing, agentic, and dreaming selves).
In Chapter 10, we analyze how mental illness impacted selfhood and how aspects of the self were narrated with well-being. Our participants shared stories reflecting an ill self with chaos, division, and lack of self-care; a negative self; and a self that was different, unable to live a “normal” life. They voiced a loss of previous self and imagined a future that was uncertain and bleak, with decline and relapse lurking at the edge. Grounded in these subthemes, identity conclusions such as “I am out of control” and “my illness will shatter my dreams” may move to the forefront of narrative identity, hindering personal recovery. Some participants also evidenced subthemes concerning how mental illness had changed them in positive ways, focusing on insight and strengths. When they storied well-being into their identities, this included subthemes revolving around themselves as agentic, growing, accepting, and valued as well as future selves reflecting hopes and dreams. From these subthemes, identity conclusions like “I can change my life for the better” and “I can learn” may sprout. Reconstructing narrative identity to cope with the costs of mental illness, while vitalizing adaptive aspects of the self may be central to personal recovery.
Too little research has addressed how individuals with severe psychopathology experience the consequences of their illness and what brings well-being in their lives. Anchored in the assumption that individuals make sense of their lives and build identity through narrative, we explored life stories of 118 individuals with severe mental disorder to answer these questions. We found that individuals story their mental illness with a range of costs to relationships, selfhood, and functional level, and that some individuals experienced aspects of treatment as an additional burden. These costs can turn into a web of negative identity conclusions, such as “I am out of control,” “I have to hide who I am,” “I am a failure with no purpose because I can’t work,” “I am a burden,” “I am too difficult to be with,” and “I am harmed by treatment.” At the same time, our participants shared well-being stories revolving around relationships as supportive, loving, and nourishing; and the self as mastering, growing, and dreaming. Many of these stories were shared in the broader context of education, vocation, leisure activities, and treatment. As counterweights to the toxic identity implication flowing from costs of mental illness, these well-being stories carried adaptive narrative identities fostering personal recovery: “I can help others who are in pain,” “I can love and others can love me,” “I can make good decisions,” “I can do well at study/work,” and “I can become better with the help of others.”
In Chapter 9, we unfold subthemes within the superordinate theme of relationships. When our participants constructed their narrative identities, they emphasized how mental illness had strained and ruptured relationships, that others did not understand or stigmatized them, and how they withdrew and felt lonely. These subthemes carry toxic identity conclusions, including “I am a burden” and “I am alone” and capture narrative identity processes involved in social alienation and self-stigmatization. Although rarer, storylines of positive impact included empathy with others in difficult circumstances and growth of relationships with adaptive identity conclusions including “I can help others in pain,” which may propel individuals to engage in peer support, one aspect of personal recovery. When our participants narrated well-being into their identities, they expanded on subthemes where other people were depicted as supportive, understanding, and helping. They shared stories about acceptance, feeling valued, togetherness, safety and stability, the possibility of giving to others, and love. These subthemes can give rise to positive identity conclusions, encompassing “I can love, and others can love me” and “I can help and support others,” narrative underpinnings of connectedness and positive identity, which are central to personal recovery.
In Chapter 13, we synthesize the findings from Chapters 9-12 into two broad models: one depicting the consequences of mental illness for narrative identity and one portraying narrative identity as a source of well-being when living with mental illness. We suggest that our model of consequences for narrative identity supplements diathesis-stress theories by expanding on the personal impact of mental illness rather than vulnerability and stress causing psychopathology. Further, we propose that interventions could benefit from addressing these costs to narrative identity. We then relate our two broad models to personal recovery, pointing out that together they capture the identity consequences individuals may need to recover from as well as identity resources to a life worth living.
In Chapter 3, we present the traditional framework for understanding mental illness: diathesis-stress theories. We outline diathesis-stress models for each of the four disorders our participants suffer from, including schizophrenia, bipolar disorder, major depressive disorder, and borderline personality disorder. We show how these theories of etiology inform treatment targeting underlying causes. We argue that this understanding will benefit from our approach: a first-person narrative identity perspective of consequences of mental illness and experiences bringing well-being. Finally, we review studies of the consequences of mental illness, including lower educational and vocational achievement, decreased role functioning, and stigmatization, and explain that the first part of our life story analyses focuses on illuminating how psychosocial costs are subjectively experienced and interpreted as a part of narrative identity.
In this first chapter, we present two main questions that we seek to answer by analyzing life stories from 118 individuals with severe mental illness: 1) What do life stories reveal about subjective consequences of suffering from mental illness and 2) What do life stories reveal about experiences bringing well-being when living with mental illness? We show how these questions touch upon themes in well-known autobiographies of authors with mental illness. Further, we discuss how answering these questions supplements diathesis-stress models by focusing on identity salient consequences rather than causes of mental illness, and on narrative identity as a source of well-being rather than symptom remission. We argue for the importance of life stories in fully comprehending the subjective side of mental illness. Finally, we provide a roadmap for the remaining chapters in the book.
In Chapter 2, we define mental illness and introduce readers to the DSM-5 as a diagnostic system. We outline diagnostic criteria for schizophrenia, bipolar disorder, major depressive disorder, and borderline personality disorder to present readers with the diagnoses of the 118 participants in our life story analyses. We discuss limitations of viewing mental illnesses as delimited categories, including studies showing high comorbidity, and review evidence that transdiagnostic approaches hold advantages. We conclude the chapter by providing rationales for approaching the two questions in our life story analyses from a transdiagnostic perspective.
In Chapter 15, we described our guide for narrative repair, an intervention developed to explore identity problems arising from mental illness and identity resources for pursuing a good life. The guide is a flexible tool that can be employed as self-help, as structured conversation with close others, and as a therapeutic intervention. The first task includes creating an overview of the life story to be employed as a platform for the other tasks and for identifying potential obstacles to narrative repair. The second task aims to explore and support coping with identity problems arising from mental illness (e.g., fear of the ill self, the negative self, and loss of previous selves). The third task focuses on exploring and reviving the agentic, growing, accepting, and valued selves and bringing them into everyday life. The fourth task consists of constructing a hopeful and realistic future story as well as considering potential routes to reach this recovering self. We suggest that vicarious stories of recovery shared by peer workers may scaffold personal recovery stories. Finally, we discuss how healthcare professionals engaging in narrative repair may deepen their empathy and gain hope by holding on to recovery stories.