research on KD and parents

Technical & specific medical articles covering many areas Kawasaki-related
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Nancy
KD Forum Leader
Posts: 647
Joined: Mon Apr 25, 2005 6:49 am

research on KD and parents

Post by Nancy » Sat Oct 08, 2011 10:20 am

hi

Very interesting article, "Parental anxiety associated with KD in previously healthy children"
nancy

Parental Anxiety Associated
With Kawasaki Disease in
Previously Healthy Children

Nita Chahal, MN, RN (EC), NP-Paediatrics, Nadia A. Clarizia, BSc,
Brian W. McCrindle, MD, MPH, Katherine M. Boydell, PhD,
Maya Obadia, MSc, Cedric Manlhiot, BSc, Rejane Dillenburg, MD,
& Rae S. M. Yeung, MD, PhD

ABSTRACT
Objective: The objective of this study was to explore the
lived experience of parents of children diagnosed with Kawasaki
disease (KD) and to identify factors associated with
increased levels of parental anxiety.
Study design: Three focus groups were conducted including
25 parents of 17 patients with KD, seven (41%) of whom had
coronary artery complications. A conceptual model was developed
to depict parental experiences and illustrate the
key issues related to heightened anxiety.
Results: Themes identified included anxiety related to the
child’s sudden illness and delay in obtaining a correct diagnosis
because of the lack of health care providers awareness and
knowledge regarding KD. Parents were frustrated by the lack
of information available in lay language and the limited scientific
knowledge regarding the long-term consequences of the
disease. Parents also reportedpositive transformations and different
perspective toward challenges in life.However, the parents
of children with coronary artery complications expressed
persistent anxiety even years after the acute phase of the illness
due to the uncertainty of the long-term prognosis.
Conclusions: There remains a critical need for richly textured
research data on the perspective and experience of families of
children with KD. J Pediatr Health Care. (2010) 24, 250-257.

Momcat
KD Forum Leader
Posts: 1516
Joined: Mon Jan 02, 2006 2:50 pm

Re: research on KD and parents

Post by Momcat » Sun Oct 09, 2011 11:07 am

No kidding......if worry could kill someone it will be the parent of one of these kids!
Kind of hard to find a support group for KD parents. It's tough enough just explaining to people what it is and what happened to your child....and that just brings out more stress. Sheesh! I'm pretty sure KD has shortened a few parents lives too...let alone the stress of all the test and anytime you have flashbacks with numbers of things. Just getting the meds monthly is weird enough in itself.

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