Working with the same caregiver group over time led to friendships, says Manda
Transcript
Interviewer: And so what kind of relationships have you had with the researchers that you’ve been working with?
Well let’s just say that one of the researchers that I work with, [name] as I said we were fortunate, he was my daughter’s developmental pediatrician for four years. So we kind of knew him informally of what his work was about. Some of the parents that are working on this Parents Partnership in Research, they have been –a lot of them are in closed Facebook groups so you kind of get to know them in that way. So it’s like you become acquaintances and then you develop friendships over time.
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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