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.