Strength in Community
The importance of community was demonstrated through connections made at the focus groups themselves. Early in the parent focus group, participants began asking about connecting with other families. At this time some participants were connected to SCAN SK. Parent Participant 2 illustrated the importance of SCA families coming together:
”And especially, most of us when we come to Canada, and, you know, we come from places where family support system is very huge. And when we can hear the support system is not as huge as it was back home with our extended families, you know… So that interaction of different parents coming together different kids, you know… we need to be able to create that environment.”
In the patient focus group, the importance of knowing you aren’t alone was emphasized in Patient Participant 2’s comment,
”Yeah, oh, maybe, um, one thing that like maybe on an infographic because they kind of always have like stats, maybe if there’s like a stat of like, how many other kids also deal with sickle cell because when I was younger, I always thought that it was like, only me until I met [another patient with SCA]. And then after I met [them], like, sometimes I’d go to the doctor, and they would say that there’s more people now… And I really never thought like that many people had it. So maybe like, that’s like that would be kind of encouraging to older teenagers too.”
Talking about SCA was found to be important, not only within SCA communities but with classmates and teachers at school. It was suggested that the cartoon video might even be useful to be shared in schools. Importantly this would also be ”an opportunity to be able to put out material out there that will ease our kids.” Patient participant 2 elaborates on the importance of this.
”When I was in elementary school, they gave me this book… to help me tell my classmates that I had sickle cell and there’s like, certain things that they can do to help me if I’m in pain and stuff. And I found at the time I really didn’t want to tell anybody but I found that it helped me a lot. So if there is like kids in elementary school who are scared to tell them, like, tell their classmates… maybe that video can help them explain what’s wrong with them and stuff.”
Our youngest participant stated he would like to share the video with his friends at school.