HLOL Podcast Transcripts

Health Literacy

The Family’s Voice in Practice, Research, and Foundations (HLOL #186)

Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and author of the book Health Literacy from A to Z: Practical Ways to Communicate Your Health Message. I’m also producer and host of this podcast interview series Health Literacy Out Loud.

Today, I’m talking with Sharon Cray, who has a degree in accountancy and worked in business for several years. But when two of Sharon’s three children were diagnosed with cystic fibrosis, often shortened to CF, Sharon entered the world of healthcare as a parent, a caregiver and a very active volunteer.

I was introduced to Sharon after reading the research paper “Patient safety after implementation of a coproduced family centered communication programme” that was published in the British Medical Journal, or BMJ.

I found this study exceptionally interesting for many reasons. One of them was that it was co-developed and co-authored by a team of scientists, clinicians and family members. That included Sharon Cray as one of the family members.

Welcome to Health Literacy Out Loud, Sharon.

Sharon Cray: Thank you, Helen. I’m so happy to be here with you today.

Helen Osborne: I think that this is great. We need to be bringing in the patient’s voice, as did in this research and all your work.

When you and I were planning this podcast, you often used the term “family voice.” I marked and flagged that. I think it’s so important. What do you mean by that term?

Sharon Cray: Family voice can mean a lot of different things in a lot of different venues. In care, it is a provider listening to a family or a patient to come up with the best medical plan for that patient. A shared mental model, if you will.

If you take it a little further, why wouldn’t you include families in research to help along with that family voice as far as your research goes? It doesn’t make sense to plan a whole research project that involves a patient and family if you don’t understand the needs and wants of that family.

Helen Osborne: Of course. You started as an accountant. You didn’t start in healthcare. Most of the people I interview say, “We chose to do this work.” It seems like this kind of happened to you. Does that change your sense of that family voice? Please share a little bit of your family story with listeners of Health Literacy Out Loud.

Sharon Cray: Absolutely. I was an accounting student at the University of Notre Dame and followed that path into my professional life. I worked for IBM and Subaru of America in my professional life.

When I was 29 years old, my second child was born with cystic fibrosis, although we did not know it at that point. We did not know that until he was 2, at which point he was diagnosed with cystic fibrosis. That threw our family into an extremely scary and unfamiliar world of medical appointments, chronic illness and hospitalizations.

When our third child, our daughter, was born five years after that, she was diagnosed right away with cystic fibrosis as well.

Helen Osborne: Thank you for sharing that story. And for using that as a platform from which you left the traditional business world to being a full-time caregiver and caretaker. Taking care of someone who has cystic fibrosis is an everyday job, isn’t it?

Sharon Cray: It is. It is a chronic illness. It has a burdensome daily care schedule of breathing treatments, chest physical therapy, airway clearance and physical therapy. There’s a lot involved. It takes a lot of time. There is no remission and there are no vacations from these responsibilities.

Helen Osborne: This is now your lived experience. You’re not only taking care of your family, and that’s wonderful, but you’re also helping others learn more about it.

I first heard about you and the work that you’re doing in this study about something called I-PASS. It’s mnemonic. It’s about structured rounds, when caregivers, physicians and others are looking at hospitalized patients in the morning.

As I understand, looking at the paper, and we’ll have a link on the Health Literacy Out Loudwebsite, I-PASS stands for Illness Severity, Patient Summary, Action List, Situation Awareness and Synthesis by Receiver.

It’s essentially a structured way to communicate during those daily patient rounds. Is that correct?

Sharon Cray: That’s absolutely correct. The I-PASS format was first used on handoffs from resident to resident. Then the researchers thought, “It worked really well to provide safer care in that situation. Why don’t we bring it bedside and try using a similar structured communication in our family-centered rounds?”

Helen Osborne: That’s wonderful. It seems so obvious, like, “What? We didn’t do that before?” We’re doing it now and they’re studying it and seeing great results in terms of increased patient safety.

How did you get involved in this?

Sharon Cray: My involvement in this whole patient- and family-centered care consultancy world began by fits. Slowly over the years, I’ve started getting involved in the CF fundraising and then a little bit more involved with the CF Foundation.

Then our Cystic Fibrosis Care Center at St. Christopher’s Hospital in Philadelphia, where my children were cared for, began a Family Advisory Board for the CF clinic. Then that grew into a position in the Family Advisory Council for the entire hospital when that became a thing.

Helen Osborne: I gather, when they’re looking for volunteers, Sharon, you were there with your hand up. Is that correct?

Sharon Cray: Yes. The I-PASS people found me from the Family Advisory Council work that I was doing.

Helen Osborne: This sounds like it is making a different in practice. For researchers to be hearing the patient’s voice and having the input in that, that’s really key. You were not only there in formulating this idea, but you were also part of the study all along the way, correct? Even the writing up of it? You’re listed as one of the authors.

Sharon Cray: That’s absolutely right. They like to say we co-produced this. We were involved in all aspects of the study, from designing the intervention to educating the team members at the sites to actually rounding with some of the team to provide feedback on family-centered rounds.

Helen Osborne: Wow. I’m really impressed.

From your perspective as someone bringing that family voice, what do you feel you bring to all this work? Whether it’s the practice side, research side, write-up side or foundation side, what do you feel that you bring that wouldn’t otherwise be there? I mean you collectively as family voices.

Sharon Cray: If you’ve never been in the situation where you have a sick child in a hospital room, you’re sleep deprived and stressed. I don’t think you can possibly understand what that is like and how to get information from that family in order to make medical decisions. I don’t think you can possibly understand what that feels like.

I call it the fog of war because it is so different from any other experience. I consider myself a very intelligent woman. But you put me in that situation and I am not the intelligent, easily queried woman that I am.

Helen Osborne: Do you mean when your child is sick?

Sharon Cray: When your child is sick, you’re in that hospital room, you haven’t slept, you aren’t eating and you’re worried about your child. It really makes you a different person.

How do you get information out of a person in that kind of addled state. How do you use that information in order to formulate a plan of action for that particular patient?

I really felt that I had that experience, and wanted to be able to use that hard-fought experience to bring that voice to providers in order to help them find a better way to practice.

Helen Osborne: Looking at it now, it’s like, “Of course. Go. Keep doing what you’re doing.” But I would assume that it didn’t all go easily along the way.

Were the provider, research and foundation communities welcoming to you from the beginning? Or were there some new roads you had to forge?

Again, I’m not just talking about you, even though I’d love to hear some stories about what worked and what didn’t, but lessons for the greater audience, be they professionals or the family voices, which we will all be at some time. How can each of us start forging that partnership that you’ve had so successfully?

Sharon Cray: I think the first step is to want it. I think, like anything else, there are different people in the provider role. They have different attitudes and beliefs about how they feel that medical decisions should be made.

If you don’t include that family voice, you could come up with a plan that sounds perfectly fine. But maybe it’s not going to work for that family or patient for whatever reason, like an allergy, time limits or whatever.

I just so firmly believe that you are missing out on quite a lot of knowledge. That parent knows their child better than anyone else. If you ignore that resource that’s right at your fingertips, your plan is not going to be as informed. It’s certainly not going to be as safe as if you work together.

Helen Osborne: I hear that. I believe it. I live it. To be one of the first people doing this, I would think, is hard. It’s hard for the professionals that might think, “This research would be a lot simpler if we could just do our study and report it rather than have to deal with this. It takes longer to bring in more voices.”

It also takes longer to find people like you to help–wise, thoughtful, articulate people who can help share that perspective.

You are on a lot of patient family committees. What would you recommend other professionals do to find that family voice?

Sharon Cray: They’re there. They’re right in front of you. Finding them is a matter of listening to the patients, if you’re the provider. If you’re a committee leader that needs someone on your committee for that voice, start with the Family Advisory Council at your hospital or institution, if you have one. If you don’t have one, form one.

Helen Osborne: Good advice.

Sharon Cray: If you can’t form one, go to your department heads and ask them what kind of family or parents they might have in their practice that might be interested in this sort of research, study, committee or whatever it might be.

Helen Osborne: Thank you for sharing that at all those levels. As you’re talking about that, it goes to the heart of what health literacy is about, too. It’s making sure that your message is understood by those you’re trying to communicate with. This is exactly the idea.

Whether it’s about daily treatment decisions, long-term plans or whatever else you’re talking about, how can the provider community decide that in isolation? They can’t. That’s an undercurrent and a key principle in health literacy. I love your suggestions.

What about suggestions for family members or patients? CF started when your children were little, so you got involved as a parent before they could probably be doing a whole lot. Your daughter is older and may be able to participate more.

Speaking from the parent and patient perspectives, how can people get involved and not feel overwhelmed and scared, especially when you’re sleep deprived, worried and have another job you’re going off to? How can all of us get involved?

Sharon Cray: It’s really hard. That’s a very good question. It is hard. I got better at it as we went along. You’re not going to be super great at the very beginning. You have to learn how to speak with medical professionals, and that takes experience.

To start off, you just have to ask a lot of questions. You’ve got to ask questions, especially if something doesn’t seem right or if you don’t think that provider in front of you has the story right. You have to speak up and just get comfortable doing that.

Helen Osborne: That means just doing it?

Sharon Cray: It means just doing it. It also means if you have a professional that you don’t think is listening to you or even cares what you have to say or what your thoughts are, then you have to find another provider.

We’ve been through that decision as well in our tenure. Sometimes you just have to find someone that you can work with.

Helen Osborne: You’re bringing forth that message again, which is so important, that communication is two-way.

Sharon Cray: It absolutely is.

Helen Osborne: Listening, hearing, sharing and doing a lot together, each bringing in their own expertise. You, a parent, and patients are experts on what that illness is like in your day-to-day lives. The scientists and clinicians are experts on research and outcomes of interventions. It’s really this great collaboration.

Sharon Cray: That’s exactly the case. The medical experts know the medicine side. The parents and families know the personal side. Working together, you can really come up with a collaboration that will make the best sense for that particular patient. It’s not a one-size-fits-all anymore. It is family-to-family, patient-to-patient, especially with a chronic disease.

Helen Osborne: Wow. Sharon, we’ve been looking at that day-to-day decision-making that happens when someone is ill. Then the family voice comes in to be part of it. We talked a little bit about the collaboration in research. What about that bigger picture of looking at that whole disease? How do patients and families be part of that?

Sharon Cray: I’m really glad you asked me that, Helen. Cystic fibrosis has a great model for that sort of thing.

The Cystic Fibrosis Foundation was started by a group of parents back in the day when there wasn’t a lot of hope to the disease. It has grown into one of the best examples of venture philanthropy in the world today. What do I mean by that?

Helen Osborne: Yes, venture philanthropy.

Sharon Cray: They actually raise money and use it to fund their research. Not only that, they have a whole network of care centers that they have accredited so that the care for cystic fibrosis is on level throughout the country. There are certain guidelines that they have for care, and those that have to be followed.

They involve the community in all aspects of not only deciding about the care, but also trying to figure out what are their next initiatives are as far as research and development.

Helen Osborne: I assume that you’re involved in bringing in that family voice to that as well. When they ask, “Who wants to volunteer for the Cystic Fibrosis Foundation?” Sharon’s hand went up again, right?

Sharon Cray: Absolutely. They have two committees called Community Voice and Research Voice that they use as a way of getting initial input into their initiatives. They can be anywhere from answering surveys to participating in a focus group to planning a conference. It can be anything and everything in your involvement with that foundation.

Helen Osborne: Wow. You’re getting involved in so many levels and opening up this world of opportunities.

When you’re talking about the Cystic Fibrosis Foundation, I’m also thinking of other initiatives I hear about, other diseases, often rare diseases, that are often tackled in a pretty overt way that the public is hearing about. Thank you for sharing that, too.

Sharon Cray: That’s true. Even cystic fibrosis, everybody has heard of it. But it’s an orphan disease as well.

Helen Osborne: Orphan disease meaning rare?

Sharon Cray: Meaning that it’s a rare disease. There are only 30,000 people in our country that have the disease, and 70,000 worldwide. It is a relatively rare disease.

Helen Osborne: One more reason I’m so glad you’re doing what you do.

Thank you for raising our consciousness even more about the importance and value of the family voice working in collaboration with the professional community. Thank you for sharing it with us on Health Literacy Out Loud.

Sharon Cray: You’re most welcome, Helen. It was a pleasure.

Helen Osborne: As we just heard from Sharon Cray, it’s important to bring in the family’s voice to health communication. But it isn’t always easy to do. You can find a lot more information about clearly communicating your health message in my book Health Literacy from A to Z.

I also serve as a plain-language writer on a lot of projects and speak about health literacy at conferences worldwide. Learn more at my Health Literacy Consulting website, www.HealthLiteracy.com.

New Health Literacy Out Loudpodcasts come out every few weeks. Subscribe for free to hear them all. You can find us on iTunes, Stitcher Radio, Google Play and the Health Literacy Out Loudwebsite, www.HealthLiteracyOutLoud.org.

Did you like this podcast? Did you learn something new? I did. I hope you did, too. If so, tell your colleagues and tell your friends. Together, let’s tell the whole world why health literacy matters.

Until next time, I’m Helen Osborne.

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"As an instructional designer in the Biotech industry, I find Health Literacy Out Loud podcasts extremely valuable! With such a conversational flow, I feel involved in the conversation of each episode. My favorites are about education, education technology, and instruction design as they connect to health literacy. The other episodes, however, do not disappoint. Each presents engaging and new material, diverse perspectives, and relatable stories to the life and work of health professionals.“

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