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Children's Hospital families have a more visible advocate

Ann Maghran and her stalwart volunteers with the Women & Children's Hospital Family Advisory Council spent the last 8½ years working in a tidy, windowless, hard-to-find corner on the first floor.

Their mission dovetailed with the Family Resource Center they helped Kaleida Health create: provide resources, encouragement and respite for families with a child in need of medical care – for free.

Last week, the center moved into a spacious office much easier to find in the new John R. Oishei Children's Hospital.

"We want Western New York to know that this resource is here for families who are using any part of Oishei Children's, whether it's the clinics or the hospital itself," Maghran said. "I don't want families to feel alone and I think a lot of families do."

Maghran, an Oishei employee, is Family Centered Care coordinator and runs the Moore for Kids Family Resource Center on the fifth floor of the 12-story hospital. It overlooks downtown.

The Fisher-Price/Mattel Family & Child Support Services floor also includes an office for Stone's Buddies, which aids families of those with chronic illness, as well as Libby's Chapel and a handicapped-accessible indoor meditation garden.

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Maghran, a Colden native, holds a bachelor's in social work from SUNY Buffalo State. She worked 14 years at Community Services, a nonprofit agency that helps children with developmental disabilities and their families, before she was recruited for her current role.

She and her husband, Mike, a semi-retired sales consultant, live in Clarence. They have four children, Tim, 34, Mark, 32, Bridget, 30, and Brendan, 29. They adopted Bridget, who has intellectual disabilities, when she was 5½.

Q. What percentage of families used the Resource Center at Women & Children's?

I think it was about 25 percent. We haven't reached as many families as we would like. I'm really hoping we'll have closer to 100 percent, especially of families that are here for a few days or more. It's also true for families who come and have to spend all day for a child's appointments and testing. Between appointments, come in here and hang out.

Q. Talk about family and patient centered care. What will that look like in the new hospital?

At its core, it's the partnership between patients, family and staff. There are four core concepts. There is information sharing, respect and dignity, collaboration, and participation. Collaboration is key.

Our Leading with Care initiative has enveloped a lot of the basic concepts. The advisory council started this whole initiative. If you keep families informed about their loved one's care and really communicate in the way they need, everyone will benefit.

Nobody comes into this hospital because they want to, unless they're going to the happy baby floor. Other than that, it's stressful. If you're coming in with a sick child, even coming into the hospital with a kid who has an earache, everybody's anxiety level is up. No one is at their best when their anxiety level is up. It's our job as staff to meet the parent or the family at that level and try to lessen that anxiety.

Q. What are some of the main conditions that patients and families are dealing with?

We have kids with chronic illnesses like cystic fibrosis, kids with developmental disabilities and an accompanying medical condition. It's really a mixed bag. People on our advisory council have children with all different diagnoses. We have kids with behavioral issues. We have a hematology/oncology floor. The medical/surgical floors have kids who come in to have their appendix or tonsils removed, ear tubes put in. Two of my kids came in for their appendix and I thought it was the end of the world because I'd never been here. … We have babies in the Neonatal Intensive Care Unit who can be patients here for a long time. There might be babies who need to come in for surgeries.

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Q. What are the main concerns of families as they tap into the center?

They're looking for information about their child's diagnosis or disability first. I have resource books, especially kid-friendly books, but everybody's on their phone now. Sometimes, they'll come down for a cup of coffee or bottled water and just sit while on the phone. I have magazines and reading materials for adults and kids. A lot of people come down and read a book. Parents can sign out books if their child is an inpatient. Some people will come down with laptops – we also have two computers – and do their bills or their own stuff. They might be working from home and can work remotely. I'm always telling parents, "Come down for a half-hour. There's a phone here and the nurse can call you. Just let them know where you're going to be.

If kids are over at Coventus (for appointments), families can come over here with other kids and read books, color and play games. We encourage that. It's why we have a little table. I also have a lot of information about agencies and resources.

Q. What else does your job involve?

I also work as a patient advocate and support, so I have families I try to visit at least weekly. There are a lot of kids with chronic illness in the hospital and those families are here for a long time. I cover the whole hospital, so I don't get to everybody I'd like to but there's people that are always on my radar. I work closely with the managers and a lot of the nurses, and in particular a couple of the docs. They'll tell me, "Go see this family. This family needs support. This family has an issue." I try to be a trouble-shooter. I answer complaints on the phone if people call. Everything has to do with patients and families.

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Q. How do the needs and concerns change for families when a condition is considered critical or chronic?

I'm not a medical person, so I never, ever offer medical advice. I'm a social worker. I refer people to the proper advisors. I recommend they talk with their nurse or doctor. There's always reputable agencies and support groups I can refer someone to. For example, if a child needs a feeding tube, I have a lot of information from the Feeding Awareness Foundation. A parent told me about it. I talked with one of the gastrointestinal docs who gives out some of that information. I try to vet things…

Some kids come into the NICU who have done really well but if you're born at 24, 25 weeks, those babies could die. One of our advisory council parents had twins born at 25 weeks and they're 5-year-old maniacs now. I talk about them a lot. You don't want to give people false hope but you want to give them hope.

Q. As a system, what are the strengths of our family services in Western New York?

I think Western New York has an abundance of private nonprofits that really make a difference. For the size of the city, we have a really unique skills set. There's a support group for almost everything. I can usually find something for a family.

Q. How about the challenges?

Sometimes it's funding. Groups have a mission and really want to reach out to families to provide them with resources, so everybody fundraises. There's a walk for this and a walk for that. We fundraise for the Advisory Council a couple times a year because we provide comfort bags for families. I also buy gas cards and Tim Horton's cards because people that are here a long time need them. If you've been here two weeks, your funds are running low. There are never enough resources for families whose kids have been here a long time. There are some resources for kids with specific illnesses, but if you have someone in here with trauma, that's different. We've had kids in here who have been in car accidents or in a fire. They're here for weeks and weeks and weeks, and their relatives are coming in day after day parking, eating. We try to support them at least a little bit. I can afford to eat here every day. There are a lot of people who cannot do that. It's hard. All the money that we fund-raise goes directly to patients and families. I buy socks. I buy gas and Tim Horton's cards. I've bought underwear. We've bought groceries. We help with adoptive families. If we have money, we spend it.

Reach the Family Resource Center at 716-323-1526 or email AMaghran@Kaleidahealth.org

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