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The burden of laryngomalacia and its effects on caregivers: A support group survey evaluation
Robert M Conway1, Gary Z White2, Prasad John Thottam3
1Ascension Macomb-Oakland Hospital, Otolaryngology - Head & Neck Surgery, Madison Heights, M, USA.
Objective:
To evaluate which factors may affect anxiety and child's health perception of parents with children that have laryngomalacia.
Study Design:
Survey Study.
Setting:
"Coping with Laryngomalacia" - largest online laryngomalacia support group for parents with children who have laryngomalacia.
Subjects:
and Methods: A survey was sent to support group member that gathered information regarding the patient's diagnosis and associated course of treatment and evaluated for parental anxiety and perceived health of their child. Analysis was performed to evaluate which variables are associated with increased parental anxiety and worsened perceived child's health.
Results:
Data was gathered on 434 patients. All caregivers reported some level of anxiety due to the diagnosis and 64% felt completely anxious. Parents who saw an increased number of physicians prior to a pediatric ENT rated their child with poorer health (p < .05). Those that felt their concerns were brushed off initially reported increased anxiety (p < .05). If the child was admitted to the hospital, ICU, required intubation, had feeding troubles, required a feeding tube, or underwent pH monitoring, the patient was rated to have poorer health per the parents (p < .05).
Conclusion:
Laryngomalacia causes a significant burden on patients and their families due to the eating problems, feeding problems, hospital stay, and other various conditions associated with the disease. Caregivers should take a more modern and compassionate approach to management and diagnosis.
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