Be raw, says Manda, don’t sugarcoat it when describing your experiences to researchers
Transcript
Interviewer: Mm-hmm, and on the opposite side of that what kind of skills do you think that caregivers like parents and families need to bring to the table when they come to these partnerships?
Provide real-life experiences and…Tell it –if they’re looking for an intimate example, try not to be afraid of even though if you’re afraid of your life is not perfect because you’re dealing with you’re a caregiver, you’re a parent. From outside it may look one way, if that researcher wants to know what the struggles are, be real with them because that is what will be used to publish something to be able to be utilized to get say funding or to help you to get better services. So don’t sugar-coat things, you know? Just be raw as they say.
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- 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