Manda learned that there are researchers who are interested in working with families who have children living with disabilities
Transcript
It’s opened my eyes to see that there are people who really love what they do in terms of they might not be affected at all by an ailment, or by a disability but yet they devote their whole lives to researching, and they want to help families. So it’s kind of like they chose to go into this world researching and trying to make it better whereas we were kind of put in this world not by our choice. And so it’s kind of like a marriage in a way and we’re hoping that it’ll develop into a long, loving relationship in terms of where it can make good things happen down the road.
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- Learning From Others – Manda
Working with the same caregiver group over time led to friendships, says Manda - Improving Patient Care and Experiences – Manda
Manda learned that there are researchers who are interested in working with families who have children living with disabilities - Developing Partnerships – Manda
Manda suggests that families share known opportunities for others get involved as a patient partner - Advice to others – Manda
Using social media and email to get involved can work, suggests Manda - Skills for partnership – Manda
Be raw, says Manda, don’t sugarcoat it when describing your experiences to researchers - Role determination – Manda
Manda is confident about the role she likes to play but recognized the need for flexibility - Motivations – Manda
Manda feels that patient representation is lacking in research related to children and disability - Developing partnerships – Manda
Manda feels that it’s not always clear to families about how they can get involved in research