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.