Manda feels that patient representation is lacking in research related to children and disability
Transcript
Unless you’re in that world yourself –sorry. It’s a very difficult world to be in and you really do have to fight for your rights for your child, and being that she’s so young I want her to have a successful life, and I want to make it as easy as possible for her. So that’s another reason why I want to get involved in the research and working with these leading let’s just say professors or clinicians to kind of make the world a better way. And a lot of the things that I found out in just reading through some journal articles is that a lot of the research was being led by the researchers themselves. They would come up with a concept, they would come up with the ideas and then try to solicit volunteers, and there wouldn’t be a lot of volunteers.
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- Learning From Others – MandaWorking with the same caregiver group over time led to friendships, says Manda
- Improving Patient Care and Experiences – MandaManda learned that there are researchers who are interested in working with families who have children living with disabilities
- 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