Manda
Caregiver
Manda is a business analyst working in the public health sector. After one of her daughters was diagnosed with cerebral palsy, she became involved in helping researchers and organizations campaign for research funding and other donations to support families who have children living with disabilities. Recently, she has been in contact with a clinician-researcher at a children’s hospital about possible opportunities for her to partner in upcoming research projects. Manda believes that families’ contributions about their true life experiences can help to determine research priorities, while researchers can help develop programs for children with disabilities, by engaging patients and families in the process. She considers the patient/caregiver-researcher partnership as a ‘marriage’, where both parties can have meaningful results for each other’s work and life. However, she feels strongly that time is an important factor for families and that researchers need to value and use families’ time wisely when engaging them in research. In addition to Manda’s efforts to improve patient and family experiences, she hopes to get more involved in research and is excited for the future of patient-oriented research and how that will help to shape the lives of families and children who live with disabilities.
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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