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Abstract
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<h5 class="section-title" id="d182465e149">Objective:</h5>
<p id="P2">To describe the perceptions of caregivers of children with medical complexity
(CMC)
about their decision to pursue tracheostomy for their children, in particular the
satisfaction with their decision.
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<h5 class="section-title" id="d182465e154">Study design:</h5>
<p id="P3">In this qualitative study conducted in western North Carolina between 2013–2014,
we
interviewed 56 caregivers of 41 CMC who had received tracheostomies in the past five
years. Three of the CMC were deceased at the time of the interview; 8 were decannulated.
In-depth interviews (35 English, 6 Spanish) were conducted, audio-recorded and transcribed
verbatim. We used ATLAS.ti software to manage data, and identified themes related
to caregiver perceptions about tracheostomy decision.
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<h5 class="section-title" id="d182465e159">Results:</h5>
<p id="P4">We found that caregivers often chose tracheostomy because extending the
lives of their
children and being able to care for them at home were importantCaregivers reported
the many benefits of tracheostomy including improvement in respiratory symptoms, physical
and developmental health, quality of life, and means to provide medical care quickly
when needed. There were negative effects of tracheostomy such as mucous plugs, excessive
secretions, accidental decannulation necessitating emergency tracheostomy tube change,
and the increased infection risk. Providing medical care for CMC with tracheostomy
at home was difficult, but improved over time. Caregivers were generally satisfied
with their decision to pursue tracheostomy for their CMC.
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<h5 class="section-title" id="d182465e164">Conclusions:</h5>
<p id="P5">Decisional satisfaction with tracheostomy for CMC is high. In counseling
caregivers
about tracheostomy, clinicians should present both the benefits and risks. Future
studies should quantify the outcomes described in this study.
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