Discussion
There is a need for age-appropriate educational resources to be available for patients with SCA and their families. There is also need for resources to ensure a smooth transition to adult care, especially since this is a medically vulnerable time for youth with SCA. Our cartoon video and teen infographic have the potential to assist in this transition and is meant to be shared with patients starting at a young age.
The major themes that arose during the focus groups highlighted important pieces of educational resource refinement and how these educational materials need to be supported by SCA health care services.
The educational materials need to be age appropriate. Breakey et al. found that there is a lack of information available on the internet for youth with SCA that is age-appropriate (11). This was echoed by our teenage participants who requested concise infographics. In the age of social media, it is important to consider the most age-appropriate media for educational material delivery. In clinic, it would be easy to show the cartoon video to younger participants as there is a growing abundance of tech available such as iPads in this setting. Teens are looking to the internet, doing independent searches for their information (11). Therefore, having infographics readily accessible on multiple social media apps and webpages would be more useful. Notably, the teens acknowledged some important information to include would be statistics about prevalence of SCA and information on how medication adherence can change their quality of life.
The materials need to be linguistically accessible. Given that many families of kids with SCA are newcomers to Canada, it is imperative that educational materials are available in a patient’s own language. YouTube auto-translator was found to be acceptable to our participant but this might not accommodate every patient’s needs. Involving a translator frequently in delivery of educational materials would most appropriately address accessibility.
Education requires family and community support. Medication adherence arose as a whole family concern. The developed educational materials could be used as a starting point for patient/family/provider brainstorming about how to take medication consistently. Strategies for medication adherence were incorporated into the final version of the video to prompt discussion.
Support does not stop within the family, as demonstrated in a teen’s comment about needing to know that they are not the only kid with SCA. Statistics were included on the infographic about prevalence of SCA. This underlines the importance of educational materials addressing not only knowledge and management pieces but also questions youth have about SCA community and their place in it.
A major theme that arose that will require ongoing collaboration is SCA emergency department care during transition to adult care. Better SCA health outcomes are not only an issue of patient/family education but rely on health care provider education as well. Transition to adult emergent care was a particular concern. Access to timely and quality emergency care and differences between pediatric and adult populations is becoming recognized as a concern in other provinces as well. In Ontario, one study found that adults are waiting much longer than their pediatric counterparts, despite visiting the ED 2.5 times more frequently (12). This highlights the importance of collaboration for SCA emergency management. For patients and their families, future educational materials could implement components of how to navigate the health care system as an adult, especially when seeking emergent care. For providers there are many resources available for emergent SCA management including a point-of-care emergency department online tool developed by the American College of Emergency Physicians (https://www.acep.org/sickle-cell/).
There are limitations to this study. It should be noted that all patient participants were male and the majority of parent participants were female. There may be gender differences in how the educational materials are received and what participants value as important in educational materials. This study was also performed within Saskatchewan and was composed entirely of Saskatchewan participants. Therefore, it is not guaranteed that our findings are generalizable to other centres.
Ultimately, our novel education materials were found to be age-appropriate and empowering, addressing knowledge gaps across all ages. Reviewing the materials with participants highlighted that patient and family education does not take place in isolation. Furthermore, it was recognized for patient educational materials to be successful, they need to be complimented by ongoing improvements to collaboration between patients, their families and providers, especially in emergent contexts.