Methods
An innovative educational cartoon video targeted towards youth with SCA
was developed to improve knowledge and self-efficacy regarding illness
management of patients and parents/guardians. Following a literature
review, the medical student developed a script for the video. Due to the
lack of information available on the internet regarding sickle cell
emergencies, the video focused on these (11). The script was then
reviewed by the pediatric hematology team. Additionally, the script was
reviewed by a patient and parent advisor team. The video was created
using Powtoon video creator and in collaboration with the Sickle Cell
Awareness Network of Saskatchewan (SCAN SK). Voice actors included a
patient with SCA as representation was thought to be paramount. Ethics
approval was attained through the University of Saskatchewan Behavioural
Research Ethics Board (ID: 2679). All proceedings involving patients
were carried out according to University research ethics board policies
and procedures. Patients (n=5; aged 8 – 18) with SCA and parents (n=5)
of patients (aged 0 – 18) were recruited via flyers emailed and mailed
to patients and distributed through SCAN SK.
Information about age, gender, ethnicity, and race was gathered at the
video interviews. All participants identified as Black, and/or of
African descent. Specificities of ethnic identity will be kept
confidential to protect participants’ identities. Three of the patient
participants were in the 16 – 18 year old age range. The remaining two
were between 8 - 10 years old. All identified as male. Most of the
parent participants identified as female. One parent participant
identified as male.
A patient focus group and parent focus group were held separately over
Zoom to receive feedback on the video. An additional interview was held
over Zoom for a participant that required video translation. Student
researcher Riley Plett facilitated all Zoom meetings. Subtitles were
provided on the video by YouTube auto-translate for the participant
requiring translation. The parent of the participant requiring
translation also aided in translation of the focus group questions.
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 knowledge and
self-efficacy concepts relevant to the research question. Feedback from
the focus groups was incorporated to refine the cartoon video and create
a summary infographic requested by adolescent participants. The summary
infographic was created using Canva and pulled information from the
video.