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

Abstract

Sickle Cell Disease (SCD) is a group of inherited blood disorders caused by a mutation in the beta subunit of hemoglobin (HbS). SCD is also known as Sickle Cell Anemia (SCA). There are approximately 5000 Canadians living with SCA including children. Pediatric SCA patient education can: improve knowledge, decrease hospitalization, improve medication possession ratio, lead to better SCA related functioning, and lower pain impact. Innovative educational materials were developed to improve knowledge and self-efficacy regarding illness management of patients and parents/guardians. Patients (n=5; aged 8 – 18) with SCA and parents (n=5) of patients (aged 0 – 18) were recruited via flyers sent directly to patients and distributed through partner patient organization Sickle Cell Awareness Network of Saskatchewan. Patient and parent focus groups were held separately over Zoom to receive feedback for the video. An additional interview was held for a participant that required translation of the video. Audio recordings were transcribed using Zoom and Otter.ai. Coding of transcripts was facilitated by NVivo (QSR International Pty Ltd, 2022, release 1.6.2). Thematic analysis centred around SCA management concepts relevant to the research aims. Important themes that emerged included: ‘Age Appropriateness’, ‘Empowerment’, ‘Knowledge Gaps’, ‘Linguistic Accessibility’, ‘Medication Adherence’, ‘Strength in Community’ and ‘Transition to Adult Care’. The video was well received, and “brought peace of mind”. Patient feedback was incorporated into the final version of the educational materials.