Documenting the Experience of Parents of Children with Lyme Disease
Location
Turner Gymnasium
Access Type
Open Access
Entry Number
16
Start Date
4-5-2023 12:00 PM
End Date
4-5-2023 1:30 PM
College
College of Health Sciences
Department
Public Health
Keywords
Lyme Disease, "Parents of children with Lyme", "Pediatric Lyme", "Supportive Services", 'Parental Frustration"
Abstract
Title: Documenting the Experiences of Parents of Children with Lyme disease
Background: Lyme disease is the most common vector-borne disease in the United States. Children are at greater risk due to their high-risk activities playing outside in tick-infested areas and not having adequate knowledge about ticks. Mainstream doctors' lack of knowledge and support often leads to parents feeling frustrated and discouraged. To date, few research studies have explored the experiences of parents of children with Lyme disease.
Methods: A cross-sectional survey with 26 questions was distributed by email and social media in Fall 2022. Participants had to be over 18, be a parent of a child diagnosed with Lyme disease, and not be in Europe or the United Kingdom to participate. Descriptive and thematic analysis was used to analyze the results.
Results: Twenty-one parents, 18 from the United States and three from Canada, participated. The age of diagnosis ranged from two to 19 years old. The official diagnosis took up to 30 doctors and 16 years. Most were extremely dissatisfied with the support they received from health professionals. Nearly all had to miss work because their child(ren) was too sick to go to school (90.5%), and half reported a very negative impact on their family (52.4%). Over half participants reported feeling anxious, fearful, worried, distressed, hopeless, and helpless in the last 7 days. Themes identified related to the strain on the whole family, children losing out on their childhood, mental/emotional strain, and recommendations for parents, providers, and schools.
Conclusions: Parents of children with chronic Lyme struggle with the emotional turmoil that the disease has on their child(ren) and family dynamics. More resources and support are needed for parents to navigate this disease. Healthcare providers and schools must be educated to support this population better.
Faculty Mentor(s)
Dr. Jennifer Hall
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Documenting the Experience of Parents of Children with Lyme Disease
Turner Gymnasium
Title: Documenting the Experiences of Parents of Children with Lyme disease
Background: Lyme disease is the most common vector-borne disease in the United States. Children are at greater risk due to their high-risk activities playing outside in tick-infested areas and not having adequate knowledge about ticks. Mainstream doctors' lack of knowledge and support often leads to parents feeling frustrated and discouraged. To date, few research studies have explored the experiences of parents of children with Lyme disease.
Methods: A cross-sectional survey with 26 questions was distributed by email and social media in Fall 2022. Participants had to be over 18, be a parent of a child diagnosed with Lyme disease, and not be in Europe or the United Kingdom to participate. Descriptive and thematic analysis was used to analyze the results.
Results: Twenty-one parents, 18 from the United States and three from Canada, participated. The age of diagnosis ranged from two to 19 years old. The official diagnosis took up to 30 doctors and 16 years. Most were extremely dissatisfied with the support they received from health professionals. Nearly all had to miss work because their child(ren) was too sick to go to school (90.5%), and half reported a very negative impact on their family (52.4%). Over half participants reported feeling anxious, fearful, worried, distressed, hopeless, and helpless in the last 7 days. Themes identified related to the strain on the whole family, children losing out on their childhood, mental/emotional strain, and recommendations for parents, providers, and schools.
Conclusions: Parents of children with chronic Lyme struggle with the emotional turmoil that the disease has on their child(ren) and family dynamics. More resources and support are needed for parents to navigate this disease. Healthcare providers and schools must be educated to support this population better.