Nikki Montgomery shares her experience as program and communications manager of Family Voices AND as a parent of a medically-complex child. An expert in plain language and health literacy, Nikki is passionate about helping families and researchers come together to engage in work that matters. 

Tell us about the goals you have in the role you play at Family Voices.

My goal is always to create materials that are easy for families to understand and navigate. When you have a medically complex child, which is part of my experience as well, the information you often receive is complicated. It’s a whole different language than what you speak in your daily life. I recognize the difficulties, the confusion that can cause angst when you are receiving materials essentially in a language you don’t understand. My goal is to provide clarity and simplicity for families to be able to understand what’s in front of them, and then be able to use that information to be equal partners in their child’s care, because the point of it all is to be able to use the information you receive. We cannot be equal partners with medical providers if we don’t have the same information, and we’re not able to use the information in the same way.

What does equal partnership look like to you?

To me, it means being able to bring my concerns and my questions to a provider and having an open dialogue. If I find an article online (which is where people often find medical information nowadays), and it’s something intriguing to me, I can bring it to a provider and say, “hey, this is what I found. What are your thoughts on it?” It’s really about an equal exchange of information and being partners in decision-making, so the care we receive is not dictated, but instead is a decision we’re making together. 

Do you have any examples of partnership in your patient/provider relationships?

My son had a tracheostomy when he was a baby, up until he was three and a half years old. I would find different devices and tools that might help his breathing improve, and I would take those to his pulmonologist, and we would have a conversation about it. 

What’s rewarding about the work you do? Have you always been interested in family communications and plain language?

Before my son was born, I worked for a private medical research agency, translating the language of the FDA for lay people. I also have bachelor’s and a master’s in English. So I did have some related experience, but I really didn’t have experience in making the language “family-friendly” versus “lay people-friendly,” and I do think there’s a difference. Preparing information for lay people is really about a general audience. For something to be family-friendly, it’s about answering the question of how do I apply this information to the care of my child? It’s another level of being more personal with how you construct information and inform people on how to use that information. 

What challenges do you face in translating research into family-friendly materials? 

A lot of people don’t see the importance of tailoring what they do to families and other partners. Seeing the importance of engaging the world outside of your walls can still be a hard sell. Everybody wants to put their nose to the grindstone and just do the work, but being able to communicate that work and engage the community is actually what makes it relevant and valuable. 

What tips do you have for anyone wishing to communicate a complicated topic in an easy-to-understand manner?

There are a couple of processes and tools I recommend. An easy starting point is a readability calculator, which can assess the grade level of the language you are using. As I look at the language I’m using in written form, I always ask myself, do people have a common word to say this thing?

I use the plain language guidelines from NIH and from the CDC. These resources are informative on how to construct a piece, including the layout. We tend to think about the words we use but don’t think about how we’ve used fonts and spacing that are hard for people to access. So accessibility is another aspect to consider, especially in terms of disability and neurodiversity. 

The “why” is really important to front load here in order to get people to care about it. We shouldn’t assume that the public is going to care about your research just because you did it. Why does it matter to their lives? How will your work make their lives, and the lives of their children better? Finally, I like to include the actions you expect from your readers. 

So, start with the words, then look at the why, then make sure the reader knows what they are supposed to do with the information.

In health care, we tend to speak our own language. What feels commonplace for us may not be the best way of communicating with others. Any thoughts on how to approach this issue?

I like to approach every project with a “sample reader” in mind. For me, this is my 11-year-old son. How would I explain this complex topic to him? What words would I use? What kind of images would I try to paint for him? Keeping in mind “who” will be using this information is really important. As you write, keep the sample reader, whether that’s a child or your grandma, in mind. 

How would you share your own experience of raising a medically-complex child with researchers to help them better understand you as their sample reader?

First of all, you have to recognize that families’ lives, especially, if you have a medically complex child, can be very different day-to-day. Sometimes it’s hard to think five years in advance. There was certainly a phase early in my son’s life where I couldn’t plan six days ahead, let alone six months or longer, because I did not know what his life was going to look like at all. Engaging families means recognizing that there’s a lot of complexity in their lives. They’re managing a lot of responsibility, so their engagement needs to be easy. They have a lot going on. 

Families of children with special health care needs are surviving and living at a higher level of difficulty than most. You have to understand that and then simplify when you want them to get engaged. 

Because research tends to be a long view, it’s also important to provide short-term expectations. Present it as, “Here’s what we’re doing over the next five years, but here’s what I need from you in the next six months.” Condense what their work is going to be and give them clear expectations. 

I’ve been on projects where it just went on and on and you never feel like you’ve done the thing you came to do, which is to help other people. I think giving families an idea of small finish lines as well as the long-term finish line is a really good way to keep that engagement. Caregiving is really complicated. It’s high stakes. Give them something that has lower stakes. 

What would you tell families who are interested in working with researchers?

I would say, don’t get discouraged if everything’s not set up for you immediately, because family engagement is something new to many researchers. You may need to ask for what you need to really engage. Don’t just sit quietly at a table. If they give you a document you don’t understand, it’s okay to ask them for a new format. This is what pushes the research team to be responsive to the family’s needs. Families need to feel like they’re co-leading and not just sitting quietly at a table to check a box.

What do you wish researchers would keep in mind as they work with family partners?

Think about how you package what you do for families. This could be a cover sheet that explains what your research is about in plain language. Preparing to engage the outside world, in general, means you’re going to have to engage in these practices of plain language, and this helps you to be a better researcher. Sharing your work in accessible ways not only promotes health literacy; it also creates a pathway for families to actually improve their health care with your research. It’s not just about your colleagues. You hopefully want to have a broader audience and have lay people reading your research and finding it relevant. This is a necessity, and it’s part of the job of really spreading and disseminating your research. It should be embedded in your process; get used to talking about your work as if you’re sharing with an 11-year-old. Community-based research is about flipping the power dynamics so that people who are affected by the research are involved throughout. It’s really powerful. 

What do you hope to see happen with family engagement in academic research in the next 20 years?

I’d like to see deep engagement of families at all levels of care. So that’s the one-to-one interaction all the way up to higher systems-level interactions. It’s about having families’ voices at the table to make sure that what you’re doing actually makes sense and is relevant for the people you’re serving and the communities most affected. 

My goal for academic research is getting families really engaged in the work behind health care, because our lives and our children’s lives depend on it. 

Nikki Montgomery, MA, MEd, GPAC is the Program and Communications Manager with Family Voices. Nikki’s passion for empowering youth and families spans the last two decades, during which she has been an educator, a health literacy specialist, a patient advocate. Nikki identifies as neurodivergent and is also the parent of a child with autism and complex healthcare needs. In addition to a graduate certificate in Patient Advocacy, for which her research was focused on increasing engagement with parents of medically fragile children, Nikki has master’s degrees in English and in Educational Psychology, with thesis research on critical thinking and health literacy for parents of children with disabilities. She is the author of the Super Safe Kids pediatric patient education series and currently serves on the Editorial Board for Pediatrics journal and on the Global Patient & Family Advisory Board for The Beryl Institute, among many other health advocacy roles.