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Dissertation/Thesis Abstract

Lived Experiences of Surrogate Decision Makers on Terminating Care for Patients with Traumatic Brain Injury
by Flores, Maribel, Ph.D., Azusa Pacific University, 2021, 241; 28260645
Abstract (Summary)

Traumatic brain injury (TBI) is a causal factor to many injury-related deaths. In cases that result in severe brain injuries, which may not be survivable, the injured lose their capacity to make medical decisions for themselves, thus relying on someone else to do so—a surrogate decision maker (SDM). Family members are frequently and abruptly placed into the situation of having to become a SDM for someone who has a life-limiting, incapacitating TBI. Also, withdrawal of life-sustaining care occurs in many traumatic injured patients who die in the intensive care unit (ICU), especially in those patients with a diagnosis of TBI, but there is little research in this area.

This qualitative study explored and described the lived experience of nine SDMs for patients with TBIs on termination of care. The narratives elicited via in-depth interviews answered the following research questions: 1) What is the lived experience of SDMs on terminating care in patients with TBI?, 2) What is the process that surrogate decision makers use to arrive at critical decisions related to their loved one?, and 3) How do SDMs adapt to the life-changing impact of having to make the difficult decision to terminate care for a loved one, both during the event and afterward?

Using Smith, Flowers, and Larkin’s six-step interpretative phenomenological analysis (IPA), six superordinate themes were derived from the participants’ narratives. Roy’s Adaptation Model (RAM) was used as the organizing/undergirding conceptual framework to explain the relationships among components of the lived experience of SDMs on the termination of care for patients with a TBI. The six superordinate themes were 1) Crisis: Initial Phases of the SDM Journey, 2) Evolving SDM Roles and Perspectives, 3) SDM Role Effects: Mind and Body, 4) Getting Through the SDM Journey, 5) Decision-Making Criteria: Narrowing the Options, and 6) Lessons Learned: Forging Ahead.

This study raised awareness of the SDM experience, shedding light on their unique needs. Some considerations for ICU nursing are that 1) being an SDM involves psychologically difficult processes, which place the SDM in a profoundly vulnerable state; 2) supporting families’ needs should be of high interest in critical care nursing; and 3) conceptualizing the ICU as a setting where physical demise takes place may be a useful view for the nurses to embrace, because death is what it becomes to the families of the loved ones in those hospital beds. Despite the busy state of the ICU setting and ominous TBI patient prognosis, it may be useful for nurses to pause and to comprehensively consider the needs of their patient’s family.

Indexing (document details)
Advisor: Fongwa, Marie
Commitee: Dee, Vivien, Doyle, John
School: Azusa Pacific University
Department: Nursing
School Location: United States -- California
Source: DAI-B 82/8(E), Dissertation Abstracts International
Subjects: Nursing, Medical Ethics, Health care management
Keywords: Interpretative phenomenological analysis, Qualitative, Roy’s adaptation model, Surrogate decision maker, Termination of care, Traumatic brain injury
Publication Number: 28260645
ISBN: 9798569978564
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