Nora measures what matters to families in children's rehab

By Louise Kinross

Nora Fayed is a self-described nerd. She loves data. Her research program at the School of Rehabilitation Therapy at Queen's University is called  Everything That Counts. Fayed measures how well health interventions improve the lives of children with complex medical problems in ways that matter to them and their parents. "Not everything that's easy to measure should be counted, but everything that's important to measure should be counted," she says. Fayed is interested in the big-picture aspects that make life good. If your child uses medical equipment like a g-tube or ventilator, or has issues with feeding, consider filling out her survey on a new assessment tool for clinicians.

BLOOM: How did you get into this field?

Nora Fayed: In elementary school in the 1980s we didn't have much integration and there were special classes for kids with disabilities. I saw them on the sidelines and I gravitated towards them. I'd hang out with them at recess or go by to help after school. Maybe I felt like an outsider as an immigrant kid. I was a nerd and an outsider and I wanted to be a helper.

One of my mom's colleagues had a daughter who was born premature with cerebral palsy. I babysat her from the time she was very young and as she got older her parents got Special Services at Home funding and I became their worker. I got to go to all of her appointments and see what she did in physio and speech and occupational therapy. Then I did the home programs that the therapists laid out. I always loved what the occupational therapist did the best. The OT program felt a lot more like play.

In my second year of university I got a job at a group home for medically complex kids. We became like a family and the residents became a part of my life. I worked 20 hours a week there even though I was a full-time student. It gave me so much purpose, and I learned to work hard and organize my time. Then I went off to OT school and felt like I'd found my people. One time I did a project about the effects of confinement on physiological function and I e-mailed an astronaut who had done his PhD on it in France. He sent me his PhD thesis in the mail, and I was floored with the connections I was making through science and learning. 

I thought if I'm going to be a scholar of occupational therapy I have to learn how to do it, so I worked at Bloorview for two years in the driver rehab program and the feeding clinic.

BLOOM: What was your experience at Holland Bloorview like?

Nora Fayed: It was magical. I felt like I'd found my place. I learned so much from the feeding team. I learned from the speech pathologist and the pediatrician and we even had a dentist which was awesome. The families would come in with whatever questions they had about feeding or nutrition or safety or medication and we were all there, rather than them having to visit a bunch of different professionals. I think it's one of the best models I've ever seen.

BLOOM: Your Facebook page is called Everything That Counts. Why?

Nora Fayed: When I went back to do my PhD I wanted to look at interventions that improve quality of life in children with epilepsy. As I became involved in looking at measurement tools, I noticed they were very psychometrically oriented and didn't bring a whole child and family perspective to how we measure things. I wanted to fill that gap.

BLOOM: What's a simple way to describe measurement tools?

Nora Fayed: It's when we take something about your child's health or health care and put a number on it so we can track over time how the child is doing. An example is taking blood pressure. What if we could do the same thing for whether your child is making friends or whether they feel pain? It's important that we quantify things that matter to families in our health care documentation, so we know whether we're doing a good job.

BLOOM: How would you describe your research in simple terms?

Nora Fayed: It's about improving health systems and health care for kids with disabilities and chronic disease through evaluating what's important to them. It's about measuring and capturing those things.

BLOOM: Why is it needed?

Nora Fayed: Science is an incremental process and as a researcher you go to the literature and you find the measures aren't there, or the existing ones don't adequately capture what families have told you is important—that friendships matter, that play matters, that fitting in matters, that love matters, that acceptance matters. From a parental perspective, it's knowing when to push and when to let go, knowing what to prioritize. You look at science for tools that reflect perspective and you don't find them. Or if you're lucky enough to find them they aren't being used or they're too long. 

BLOOM: What's an example of research about big-picture issues?

Nora Fayed: Five years ago the Provincial Council for Child and Maternal Health was rolling out coordinator care interventions for kids with medical complexity across Ontario in acute-care settings. They contacted me about selecting a measurement tool that would tell the big-picture story of quality of life for children and families. 

I pushed back and said 'How do you know they want us to measure their quality of life?' They were open and responsive and did some engagement work with us and we asked the families and their clinicians what are the most important things to look at to know this coordinator care intervention is making a difference?

We came to a consensus that we needed to look at the child's mental health and their pain, and we needed to look at their experience of medical technology and how they were feeding. How were they managing with g-tubes or central lines or ventilators or traches? How do you know your child is feeding well?

We had assessment tools for mental health and pain, but not for medical technology and feeding. For the last three years we've been working with families to create those. We trained families to be qualitative researchers and they asked other families like them 'How do you know your child is feeding well? What does good feeding look like?' Then we did that for medical technology. We had a list of hundreds of questions that we then transformed into a survey and got people to rate those things. 

The challenge is we need hundreds of people to fill in the survey so we can do a statistical analysis. So far we've had 50 people fill it out. We need something like 250 people so that we can get from hundreds of questions down to the 10 good questions we need to ask to know how a family is doing with their child's feeding or medical equipment.

We started with families in Canada and now we're asking people around the world to fill it out. When we did our qualitative work we involved many different people and cultures and types of families. That included new Canadians, LGBTQ families, people who didn't speak English at home, and single parents.

BLOOM: What's the greatest challenge of your research?

Nora Fayed: In general it's getting clinicians, other researchers, families, governments and policy makers to understand the connection between a good measurement tool and making the world a better place for young people. 

BLOOM: Are you saying that a lot of people aren't naturally inclined to be interested in measurement tools?

Nora Fayed: A lot of us who think in the big-picture space gravitate to interventions we think will make a difference. But we haven't included in our system in a structural way how to know if we're doing our jobs in terms of what's important. 

We're excited about a program, but not about evaluating it. That's grunt work. You don't get the big emotional payoff quickly. Even when asking families to participate in this research, it's not particularly exciting to sit for an hour and answer questions from a scale of 1 to 5.

Sometimes clinicians know a program works but can't show it. How do you prove it's valuable to funders?

If you have the right tool that shows in a systematic way what's important to children and families then you've built hundreds of levels of accountability and improvement in our systems.

How that plays out could be in proving the value of a program to a policy maker or setting an individual family on the right course. They can see it in the numbers. It could be protecting a precious resource within a hospital or filling a gap within a community where it's really needed but no one wants to fund it.

BLOOM: What's the greatest joy of your work?

Nora Fayed: I'm going to sound like a nerd, but I love to get data and I love interpreting the data and sharing it with families. Bringing the whole scientific process full circle with the families is my favourite thing.

BLOOM: Has anything surprised you about your research results?

Nora Fayed: What doesn't surprise me is what ends up being important. There are some universal themes that keep coming forward. Kids want to grow up having friends and being connected to peers. Parents are struggling with figuring out what's the most important thing for their child now and what they'll need in the future to have a good life. And how to make that happen. The other universal theme is that for the majority of families, support makes the difference between being healthy and well and happy, or not. 

BLOOM: You mean for both kids and parents, right?

Nora Fayed: Yes. Support is one of the biggest gaps in our system. If you look at the evidence that we're increasingly getting, it makes a huge difference to a caregiver's mental health. There should be a lot more support.

Families have a lot of power when they're together and if they have access to good evidence. If I helped create some of that evidence, then of course it's rewarding. They can go to a policy maker or elected official and say 'If you do this, it will help us and if you don't, this is what it's going to cost.'

BLOOM: What do you hope families take from your research?

Nora Fayed: That there are a lot of researchers investing in the structure of the system to make it better, and that you are seen. 

BLOOM: What about clinicians?

Nora Fayed: That when these tools are ready they can build them into their practice without too much effort in order to validate what they do well and help them figure out what they need to improve on. It will bring them closer to their families and make them happier with their jobs. 

Of course there's a bigger target we haven't talked about, which is policy makers and the public.

BLOOM: I feel very cynical about the public. It seems like the average person doesn't want to know about the issues that families of children with disabilities face. Those issues never become election issues. How can we change that?

Nora Fayed: If I knew the answer to that question, childhood disability researchers would be much better resourced than they currently are. But something I learned during the pandemic was that the rights and needs of all children are far less protected than I realized. A lot of decisions were made about children without their best interests in mind.

It's important to get out the message that at some point many children struggle with some aspect of health or wellbeing that will disable them. Whether it's being anxious or having an attention issue or a physical disability or a brain injury. What benefits children who use wheelchairs or who have learning issues or who face poverty or addiction benefits all children, and our society needs to get hip to that. 

BLOOM: You mentioned that you have two children and one of them has autism.

Nora Fayed: Yes, my daughter is nine and my son is six and he's on the spectrum. I'm doing it on my own. I'm a widow. Their father died five years ago, so I wear a lot of hats.  

BLOOM: How has having a child with a disability influenced your work?

Nora Fayed: It's given me more detailed insights. It's given me a stronger sense of how challenging it is on a day-to-day basis. What I learned from my son is he is the way he is and there's no parenting trick in the book that's going to make him any different. I knew that intellectually before, but now I really know it.

BLOOM: It's a real advantage to come to that understanding when your child is young.

Nora Fayed: I didn't know my son was autistic until a year-and-a-half ago. But having children in general drove home for me that these kids are not a blank slate. They're not your project. You don't get to decide how they're going to be by giving inputs and thinking the output will be the product. But I'm not immune to worrying like other parents. Did I let him play too much Minecraft today? Did I take away his chances because I was too tired to do something?   

Go to the Everything That Counts Facebook page to learn more about Nora Fayed's research. Or follow Fayed on Twitter @NoraQol. Like this interview? Sign up for our monthly BLOOM e-letter. You'll get family stories and expert advice on raising children with disabilities; interviews with activists, clinicians and researchers; and disability news.