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Empowering patients with sickle cell anemia and their families through innovative educational methods

Riley Plett1,2, Craig Eling3, Sarah Tehseen1,3

  • 1Department of Pediatrics University of Saskatchewan Saskatoon Canada.

Ejhaem
|November 29, 2023
PubMed

Insights

Innovative educational videos for pediatric sickle cell anemia (SCA) patients and parents were developed. Feedback improved materials, enhancing knowledge and self-efficacy for better illness management and reduced hospitalizations.

Area of Science:

  • Hematology
  • Pediatric Medicine
  • Health Education

Background:

  • Sickle cell disease (SCD), referred to as sickle cell anemia (SCA), affects approximately 5000 Canadians.
  • Pediatric SCA patient education is crucial for improving health outcomes, including reduced hospitalizations and better functioning.
  • Existing educational materials may not adequately address the needs of pediatric patients and their families.

Purpose of the Study:

  • To develop and evaluate innovative educational materials for pediatric SCA patients and their parents/guardians.
  • To improve patient and parent knowledge and self-efficacy in managing SCA.
  • To gather feedback for refining educational content to meet specific needs.

Main Methods:

  • Development of educational videos tailored for pediatric SCA patients and parents.
  • Recruitment of 5 pediatric patients (aged 8-18) and 5 parents (aged 0-18) with SCA.
  • Focus groups and interviews conducted via Zoom, with transcripts analyzed using NVivo software.
  • Thematic analysis focused on SCA management concepts, including age appropriateness, empowerment, and medication adherence.

Main Results:

  • Key themes identified include 'Age Appropriateness', 'Empowerment', 'Knowledge Gaps', 'Linguistic Accessibility', 'Medication Adherence', 'Strength in Community', and 'Transition to Adult Care'.
  • The educational video was positively received, with participants reporting it 'brought peace of mind'.
  • Patient and parent feedback was successfully incorporated into the final version of the educational materials.

Conclusions:

  • The developed educational materials are effective in improving knowledge and self-efficacy for SCA management in pediatric patients and their families.
  • Incorporating patient and parent feedback is essential for creating accessible and impactful health education resources.
  • These materials have the potential to decrease hospitalizations and improve overall quality of life for individuals with SCA.

Keywords:
hematologypediatric hematology/oncologysickle cell anemiasickle cell disease

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