Development and preliminary evaluation of a genetics education booklet for retinoblastoma

Author:

Irvine Taylor1,Brundage Monica2,Hudani Ashna3,Kabiru Joy4,Kimani Kahaki56,Njuguna Festus7,Njambi Lucy56,Dimaras Helen2891011ORCID

Affiliation:

1. The Humanities Program The University of Toronto Toronto Ontario Canada

2. Human Biology Program The University of Toronto Toronto Ontario Canada

3. International Development The University of Toronto Toronto Ontario Canada

4. Eye Unit PCEA Kikuyu Hospital Kikuyu Kenya

5. Department of Ophthalmology University of Nairobi Nairobi Kenya

6. Kenyatta National Hospital Nairobi Kenya

7. Department of Child Health and Paediatrics Moi University Eldoret Kenya

8. Department of Ophthalmology and Vision Sciences, Faculty of Medicine The University of Toronto Toronto Ontario Canada

9. Division of Clinical Public Health, Dalla Lana School of Public Health The University of Toronto Toronto Ontario Canada

10. Department of Ophthalmology and Vision Sciences The Hospital for Sick Children Toronto Ontario Canada

11. Child Health Evaluative Sciences Program SickKids Research Institute Toronto Ontario Canada

Abstract

AbstractBackgroundParents and survivors of retinoblastoma often hold misconceptions about the disease and desire more extensive and detailed information about its genetic nature. The aim of this study was to co‐develop and evaluate a genetic education booklet for retinoblastoma.MethodsA human‐centered design approach was employed, in which the study team consulted with clinician and patient knowledge user groups to design, produce, and refine an educational booklet. Over three phases of consultation, the study team met with each knowledge user group to review booklet prototypes and collect feedback for its further refinement. A preliminary evaluation using quantitative and qualitative methods was completed with six mothers of children with retinoblastoma.ResultsThe iterative, phased design process produced an educational booklet rich in images and stories, with complex genetic topics described in simplified terms. The preliminary evaluation showed an average improvement in knowledge between pre‐ and post‐test questionnaire of 10%. Participants were satisfied with content and comprehensiveness of the information included in the booklet.ConclusionA novel educational tool for families affected by retinoblastoma was developed through collaboration with health care and patient knowledge users. Preliminary evaluation results indicate it is feasible to implement and study the booklet in a prospective, pragmatic trial to evaluate its efficacy.

Publisher

Wiley

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