Parents' Views on Self-Advocacy in Children with Myositis
Author Information
Author(s): Katz James D, Mamyrova Gulnara, Agarwal Shilpi, Jones Olcay Y, Bollar Harriet, Huber Adam M, Rider Lisa G, White Patience H
Primary Institution: The George Washington University
Hypothesis
What are the barriers faced by families in the transition of care for children with idiopathic inflammatory muscle disorders?
Conclusion
The study found significant deficiencies in the healthcare experiences of families regarding knowledge, self-advocacy, and transition planning.
Supporting Evidence
- Only 22% of families reported access to a transition healthcare professional.
- Less than 40% of respondents were aware of a posted policy for transition of care.
- Only 7% of families had a written plan for moving to adult healthcare.
Takeaway
Parents of children with myositis feel that their kids need more help to take charge of their health as they grow up.
Methodology
An anonymous online survey was conducted with parents of children with idiopathic inflammatory muscle diseases.
Potential Biases
The study may be subject to biases inherent in anonymous survey research.
Limitations
The study is limited by self-reported data, small sample size, and potential biases in the survey responses.
Participant Demographics
The majority of respondents were parents of children aged 15.1 to 21 years, with 78% of respondents being female patients.
Statistical Information
P-Value
p<0.05
Statistical Significance
p<0.05
Digital Object Identifier (DOI)
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