Manda

Manda

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. 

Caregiver

Videoclips

Click on the videoclip title for a full page view. Click on the transcript button to open or close the transcript section.

View transcript

Who want to get involved? I would say nowadays social media, use the internet. If your loved one has a particular let's just say disability, or ailment, or kind of condition Google it and look how do I get involved with X organization? And then maybe keep calling the company or the organization say are you doing any type of research? How can I participate? Or even send them an email. That would be the best way through social media I would say.

[...]As a newbie toward the world what I had done is on some of the conference calls I'd provide my input, but I'd make sure I listened to what these other caregivers would have to say and then I reached out to someone who I respected and who I thought brought a lot of years of experience, and I asked them. I said how did you get so involved? They can easily quote the multiple journals, multiple physicians, multiple researchers and just asked them ‘how did they do it’? And basically it just takes time. You have to --you'll get there in a matter of time.

View transcript

Interviewer: Yeah, no that's fine. What do you think might make it challenging for families or parents to get involved in research partnerships?

Not knowing where to go because there are so many organizations out there, everyone has a mission. You know, there's a different coalition association, the hospital organization, a fund, a charity. It's not knowing where to go. There's not one centralized location, or the terminologies using differently like it might be called as parent-led research, or researchers working with parents, or parents partnering in research, or sponsored research by parents. There's no centralized terminology in terms of how to get parents involved in research. If you were to Google it, this term would be under so many different categories that I would say it's just lack of knowledge knowing where to go, because when you go to say your physician or clinician and you’re asking these questions they might have their own say five resources.

View 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.

View 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.


 

View 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.


 

View transcript

Unless you're in that world yourself --sorry. It's a very difficult world to be in and you really do have to fight for your rights for your child, and being that she's so young I want her to have a successful life, and I want to make it as easy as possible for her. So that's another reason why I want to get involved in the research and working with these leading let's just say professors or clinicians to kind of make the world a better way. And a lot of the things that I found out in just reading through some journal articles is that a lot of the research was being led by the researchers themselves. They would come up with a concept, they would come up with the ideas and then try to solicit volunteers, and there wouldn't be a lot of volunteers.

View transcript

I would like to be involved from say ground zero, and then just throughout the entire process because it's kind of like --it's a little project that you start working with and you want to see it flourish into --it's a little seed and then it flourishes into a beautiful flower. But I actually, physically have to take a little pause because I'm scheduled to have my baby next week. so there will be parts of the let's just say any aspect I might miss because I'm having the baby, but I would definitely like to be involved in the beginning where the seed is planted and just see it go through the end because it is kind of like a baby. You’d be proud of what you've put your sweat into and see what it's come out to be.

View 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.