Manda suggests that families share known opportunities for others get involved as a patient partner
Transcript
So it’s all about you just have to have inquisitive nature and what I’ve come to learn is families will help families. If you don’t talk to other parents or other caregivers you won’t know. So in essence it’s just always ask questions. Social media has been very helpful in terms of Facebook trying to get out there, but there’s families 1, who don’t know English, 2, who don’t have social media, 3, they don’t have time for it. So there is no one centralized let’s just say portal where families can go to find information.
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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