Manda is confident about the role she likes to play but recognized the need for flexibility
Transcript
I would like to be involved from say ground zero, and then just throughout the entire process because it’s kind of like –it’s a little project that you start working with and you want to see it flourish into –it’s a little seed and then it flourishes into a beautiful flower. But I actually, physically have to take a little pause because I’m scheduled to have my baby next week. so there will be parts of the let’s just say any aspect I might miss because I’m having the baby, but I would definitely like to be involved in the beginning where the seed is planted and just see it go through the end because it is kind of like a baby. You’d be proud of what you’ve put your sweat into and see what it’s come out to be.
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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