Blending and Switching Care Strategies

Save My Kid ◽

10.18574/nyu/9781479863938.003.0005 ◽

2020 ◽

pp. 105-126

Author(s):

Amanda M. Gengler

Keyword(s):

Critically Ill ◽

Management Strategies ◽

Illness Experience ◽

Critically Ill Children ◽

Illness Management ◽

Health Capital ◽

Emotional Dynamics

Chapter 5 analyzes the emotional dynamics of families with critically ill children, detailing the cases and moments in which families blended or switched illness management strategies. For families with enough cultural health capital to care-captain at strategic moments, stepping back and care-entrusting at other times could facilitate a less harried illness experience. These cases, along with instances in which other families switched strategies, illuminate the powerful emotional forces driving families’ decisions about how to manage their child’s illness.

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The Fragility and Tenacity of Hope

Save My Kid ◽

10.18574/nyu/9781479863938.003.0007 ◽

2020 ◽

pp. 156-172

Author(s):

Amanda M. Gengler

Keyword(s):

Brain Tumor ◽

Daily Life ◽

Management Strategies ◽

Illness Management ◽

Stepping Stone ◽

Life Threatening Illness ◽

The World ◽

Life Threatening ◽

Emotional Dynamics

Chapter 7 introduces the author’s sudden personal immersion into the world of negotiating life-threatening illness. When Amanda Gengler’s father was diagnosed with a terminal brain tumor, the significant advantages of care-captaining and the potential consequences of care-entrusting were brought into even sharper relief. By living an experience somewhat parallel to that of the families she was studying, she found the emotional dynamics at the root of these illness management strategies crystalizing in her own daily life. She also learned intimately that hope can ultimately serve as both a stepping stone and a stumbling block as illness unfolds.

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Iatrogenic Opioid Withdrawal in Critically Ill Patients: A Review of Assessment Tools and Management

Annals of Pharmacotherapy ◽

10.1177/1060028017724538 ◽

2017 ◽

Vol 51 (12) ◽

pp. 1099-1111 ◽

Cited By ~ 10

Author(s):

Ada W. Chiu ◽

Sofia Contreras ◽

Sangeeta Mehta ◽

Jennifer Korman ◽

Marc M. Perreault ◽

...

Keyword(s):

Critically Ill ◽

Critically Ill Patients ◽

Assessment Tool ◽

Data Extraction ◽

Management Strategies ◽

Pediatric Intensive Care ◽

Opioid Withdrawal ◽

Assessment Tools ◽

Critically Ill Children ◽

Reference List

Objective: To (1) provide an overview of the epidemiology, clinical presentation, and risk factors of iatrogenic opioid withdrawal in critically ill patients and (2) conduct a literature review of assessment and management of iatrogenic opioid withdrawal in critically ill patients. Data Sources: We searched MEDLINE (1946–June 2017), EMBASE (1974–June 2017), and CINAHL (1982–June 2017) with the terms opioid withdrawal, opioid, opiate, critical care, critically ill, assessment tool, scale, taper, weaning, and management. Reference list of identified literature was searched for additional references as well as www.clinicaltrials.gov . Study Selection and Data Extraction: We restricted articles to those in English and dealing with humans. Data Synthesis: We identified 2 validated pediatric critically ill opioid withdrawal assessment tools: (1) Withdrawal Assessment Tool–Version 1 (WAT-1) and (2) Sophia Observation Withdrawal Symptoms Scale (SOS). Neither tool differentiated between opioid and benzodiazepine withdrawal. WAT-1 was evaluated in critically ill adults but not found to be valid. No other adult tool was identified. For management, we identified 5 randomized controlled trials, 2 prospective studies, and 2 systematic reviews. Most studies were small and only 2 studies utilized a validated assessment tool. Enteral methadone, α-2 agonists, and protocolized weaning were studied. Conclusion: We identified 2 validated assessment tools for pediatric intensive care unit patients; no valid tool for adults. Management strategies tested in small trials included methadone, α-2 agonists, and protocolized sedation/weaning. We challenge researchers to create validated tools assessing specifically for opioid withdrawal in critically ill children and adults to direct management.

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Care-Entrusting

Save My Kid ◽

10.18574/nyu/9781479863938.003.0004 ◽

2020 ◽

pp. 77-104

Author(s):

Amanda M. Gengler

Keyword(s):

Medical Care ◽

Critically Ill ◽

Critically Ill Children ◽

Health Capital ◽

Critically Ill Child

Chapter 4 profiles families of critically ill children who primarily care-entrusted. The author lays out the very different philosophies that several families applied to managing their children’s medical care and shows the various ways that they channelled their advocacy efforts. These families missed out on some of the medical advantages care-captaining could produce, and, with fewer resources, often struggled to negotiate the logistical demands of caring for a critically ill child. Yet care-entrusting often makes more emotional sense for families with little cultural health capital, and as such can provide them some important nonmedical benefits.

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Hope Is a Thing with Feathers

Save My Kid ◽

10.18574/nyu/9781479863938.003.0001 ◽

2020 ◽

pp. 3-23

Author(s):

Amanda M. Gengler

Keyword(s):

Critically Ill ◽

Family Life ◽

Healthcare Providers ◽

Critically Ill Children ◽

Health Capital ◽

Life Threatening Illness ◽

Life Threatening ◽

Basic Concepts ◽

Reproduction Of Inequality

Since families with critically ill children have different resources available to them, they take different approaches to managing their child’s life-threatening illness. The author introduces basic concepts that are analyzed over the course of the book, including care-captaining, which involves working hard to influence the course of their child’s treatment, and care-entrusting, which involves deferring to the judgement of their child’s healthcare providers. Additionally, the chapter covers the topic of healthcare inequality and cultural health capital, emotions and the reproduction of inequality in family life, and more.

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Save My Kid

10.18574/nyu/9781479863938.001.0001 ◽

2020 ◽

Author(s):

Amanda M. Gengler

Keyword(s):

United States ◽

Critically Ill ◽

Healthcare System ◽

Treatment Process ◽

The United States ◽

Illness Experience ◽

Critically Ill Children ◽

Medical Decisions ◽

Emotional Culture ◽

The Us

In “Save My Kid,” sociologist Amanda Gengler examines how families of critically ill children navigate the US healthcare system. Not all families are equipped with resources for critically ill kids, but the toolkits that are available to them shape their approach to seeking care and negotiating the treatment process, as well as their ability to maintain some degree of emotional stability in the midst of profound distress. ”Save My Kid” uncovers the powerful role emotional goals—deeply rooted in the emotional culture around illness and medicine in the United States—can play in driving medical decisions, healthcare interactions, and the end of children’s lives if and when they come. This book draws out the often unrecognized, everyday inequalities that unfold throughout the illness experience while shedding important light on the emotional foundations on which they rest.

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