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ERIC Number: ED651763
Record Type: Non-Journal
Publication Date: 2023
Pages: 212
Abstractor: As Provided
ISBN: 979-8-3821-9308-3
ISSN: N/A
EISSN: N/A
Building Self-Management and Self-Advocacy Skills in Students with Sickle Cell Disease: Communicating Health Needs in the School Setting
Donna J. Romack
ProQuest LLC, D.Ed. Dissertation, Indiana Wesleyan University
Sickle cell disease (SCD) is a lifelong chronic medical condition diagnosed through screening at birth. Complications of SCD can significantly burden affected children as they learn to manage their health needs. This study sought to investigate the perceived obstacles that may hinder children with SCD from receiving the necessary support and resources at school. The research aimed to evaluate the impact of intentionally equipping children aged 8-14 with essential SCD education, self-care, and self-management guidelines to encourage self-advocating behaviors at school and explore how perceived racial bias influences students' pursuit of equitable support for their health and educational needs. Eighteen children with SCD attending multidisciplinary clinic appointments at a Midwest medical center consented to participate. Demographic and quality of life information was collected using the PedsQL (8-12) (13-18) Sickle Cell Disease Module Version 3.0, and the Demographics, Stanford, Education, Employment, and Income Questionnaire. SCD education and a school action plan were implemented during medical appointments to empower children to advocate for their health needs at school. The Romack Sickle Cell Disease Knowledge & Self-Management Survey revealed that the intervention and school plan positively impacted participants' SCD knowledge. The Rosenberg Self-Esteem Scale scores remained strong between the pre-test and post-test, indicating a robust sense of self-worth. The children reported an increased likelihood of self-advocacy in addressing their health needs at school. Analysis of the Perception of Racism among Children and Youth revealed that younger children have a lower perception of racism than those 12 years and above. Overall, the findings suggest that children who receive SCD education in healthcare settings can actively participate in managing their healthcare. Importantly, the study showed that the students' perception of racial bias did not hinder their pursuit of support for their health and educational requirements. [The dissertation citations contained here are published with the permission of ProQuest LLC. Further reproduction is prohibited without permission. Copies of dissertations may be obtained by Telephone (800) 1-800-521-0600. Web page: http://bibliotheek.ehb.be:2222/en-US/products/dissertations/individuals.shtml.]
ProQuest LLC. 789 East Eisenhower Parkway, P.O. Box 1346, Ann Arbor, MI 48106. Tel: 800-521-0600; Web site: http://bibliotheek.ehb.be:2222/en-US/products/dissertations/individuals.shtml
Publication Type: Dissertations/Theses - Doctoral Dissertations
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Grant or Contract Numbers: N/A