Manda feels that it’s not always clear to families about how they can get involved in research
Transcript
Interviewer: Yeah, no that’s fine. What do you think might make it challenging for families or parents to get involved in research partnerships?
Not knowing where to go because there are so many organizations out there, everyone has a mission. You know, there’s a different coalition association, the hospital organization, a fund, a charity. It’s not knowing where to go. There’s not one centralized location, or the terminologies using differently like it might be called as parent-led research, or researchers working with parents, or parents partnering in research, or sponsored research by parents. There’s no centralized terminology in terms of how to get parents involved in research. If you were to Google it, this term would be under so many different categories that I would say it’s just lack of knowledge knowing where to go, because when you go to say your physician or clinician and you’re asking these questions they might have their own say five resources.
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- Developing Partnerships – MandaManda suggests that families share known opportunities for others get involved as a patient partner
- Advice to others – MandaUsing social media and email to get involved can work, suggests Manda
- Skills for partnership – MandaBe raw, says Manda, don’t sugarcoat it when describing your experiences to researchers
- Role determination – MandaManda is confident about the role she likes to play but recognized the need for flexibility
- Motivations – MandaManda feels that patient representation is lacking in research related to children and disability
- Developing partnerships – MandaManda feels that it’s not always clear to families about how they can get involved in research