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.