DSCC Partners in Research Study to Improve Home Health Care for Children

November 29th, 2023

A mother feeds her daughter through a feeding tube in her abdomen as the young girl lies on her back

“SafeCare@Home4Kids” aims to understand and prevent safety issues at home for children with medical complexity

The Division of Specialized Care for Children (DSCC) is excited to partner on a new research study to help improve home health care for children with complex medical needs.

The research team is led by Dr. Carolyn Foster of Ann and Robert H. Lurie Children’s Hospital of Chicago. Foster is one of our Medical Advisory Board Members.

Foster and her research team have received a $2 million grant award to fund the study, called “The SafeCare@Home4Kids Learning Lab: Designing Safer Healthcare at Home for Children.” 

This study will bring together experts and patient families to better understand how family caregivers and home nurses can help identify, communicate and prevent safety issues at home for children with complex medical needs. The study will use this input to create a digital safety toolkit to help support families.

DSCC Executive Director Thomas F. Jerkovitz said DSCC appreciates this opportunity to partner in the study. He said DSCC will share our team’s experiences with families and home nurses who report safety challenges at home.

Dr. Molly Hofmann, our Director of Care Coordination, Systems Development and Education, is one of the participating experts.

“DSCC plays such a pivotal role in supporting care in the home and… is a repository for safety events,” Foster said. “DSCC also plays such a functional role in creating solutions, so it was pretty clear to me I wanted to have DSCC be a partner in the grant.”

Children with medical complexity need substantial amounts of care to live safely at home. In recent years, their families have taken on increasingly more in-depth medical care at home.

“We send patients home with increasingly more complex medical regimes, and families have expressed to us they didn’t have a clear way to get the support they need when experiencing problems at home,” Foster said.

“A lot of our patients have an artificial airway to help them breathe or they have a g-tube in their stomach to help them eat. If that gets clogged or it falls out or the tubing connected to the machine gets broken, then they can’t get the nutrition they need and they end up in the emergency room. And it’s a life-threatening event at home if their airway isn’t working,” Foster continued. “The idea for the study is we want to find out what are the things leading up to when those safety events occur so we can prevent them.”

“SafeCare@Home4Kids” also wants to help improve communication when medical device and equipment malfunctions happen at home.

“Doctors don’t always know, and families might not know that they should or can tell us about it. They might tell the DME (durable medical equipment company) to get the replacement part, but we don’t know about it, so we keep ordering it for other patients,” Foster said. “It’s both an issue for current patients and also an issue for future patients.”

The study aims to create a better system where families can communicate safety problems at home and know who to notify when they occur.

“One of the problems we recognize is families are scared they’re going to get in trouble. We want to make sure they feel supported to let us know when medical problems are happening at home,” Foster said. “The goal is to move past the reporting safety events to preventing them in the first place.”

The study will also host focus groups to hear directly from families about the safety issues that affect them.

“The goal is to hear from real families on what it’s like day-to-day,” Foster said. “Hopefully it’s the beginning of several projects to support how we’re improving care in the home.”

If you are a family member and would like to participate or learn more about the “SafeCAre@Home4Kids” study, you can email Foster at fosterlab@luriechildrens.org.

We are excited to collaborate with Foster and her research partners on this important project. We’ll share more updates and opportunities to get involved as it progresses.

The project kicked off in September and will continue through July 31, 2027.

Strategies to Empower Family Caregivers

November 25th, 2020

A mom holds her young daughter with complex medical needs and smiles at her

DSCC provides support and resources to strengthen caregivers’ ability to care for themselves and children with special healthcare needs.

November is National Family Caregivers Month. It’s an opportunity to celebrate all of you who selflessly and continuously care for your children and loved ones with special healthcare needs.

At the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC), we recognize the huge role you play in your child’s overall health and wellbeing. We value our partnership with parents and caregivers to help set goals for your child, identify strengths and make plans to achieve what is important to your family.

We also understand the importance of caregiver health and providing you the right support and resources. DSCC is dedicated to empowering caregivers and strengthening your ability to provide care for someone else. 

We recognize how you are there every day, managing multiple care needs and navigating complex healthcare systems, insurance systems and more. Our priority is to help strengthen your knowledge, reduce your stress and help you feel more confident and organized in your child’s care.

Here are three significant ways we aim to empower caregivers:

  1. Partner with you to identify what you, your child and your family need. As the parent or caregiver, you know your family’s unique needs and values better than anyone. We listen to these needs and partner with you to identify your child and family’s goals and how to accomplish them. If you are not enrolled in our program or need help knowing how to identify your needs, this quick self-assessment tool can help.
  2. Help you brainstorm and connect with others. Conversations around health allow all of us to get creative, see things differently and develop new ways of doing things.  These creative ways can save you time, energy or allow for improved interactions.  Some connections in the community are your primary health or behavioral treatment specialist, other DSCC parents or a community parent support group.
  3. Connect you to the latest research and information. As growing research helps us better understand physical and mental health, it can also show new techniques, interventions and treatment options. Think about how you learn best and reach out to trusted sources. Our staff can help you find the best sources of information. We are also experts on local resources and supports available in your community.

The physical and emotional demands of caring for a child with special healthcare needs are 24/7. Though we can’t take away all the worries and emotions, we can provide a consistent helping hand to support you through your child’s journey with a medical condition

To learn more about our care coordination, visit our How We Help page. You can also contact your local DSCC Regional Office or call us at (800) 322-3722.

Our online Resource Directory also includes resources and tips for caregivers.

Featured resources include:

DSCC Cares About Caregivers

December 18th, 2018

DSCC's Lombard RO staff poses with blankets they made for caregivers

DSCC staff join forces to honor caregivers during National Family Caregivers Month.

Staff at the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC) understand that caring for a child with special needs is one of the most demanding circumstances a family can face.

For National Family Caregivers Month in November, we wanted to do something special to support the amazing caregivers we partner with while also having fun working together as a team.

We invited our regional offices to plan a service project to benefit a group of caregivers in their community. Many of our staff jumped at the chance to participate.

Here’s a recap of how they helped –

Champaign Regional Office

DSCC's Champaign Regional Office staff fill red backpacks with items for family caregivers.Champaign RO staff put together care packages for families with children hospitalized in the Carle Foundation Hospital neonatal intensive care unit (NICU).

They filled our DSCC drawstring backpacks with items to help make staying at the hospital more comfortable for these deserving parents. Champaign staff are also partnering with Carle’s NICU and mother/baby social workers so families are aware that DSCC is here to help connect them to services and resources.

Carle’s NICU and mother/baby social workers were thrilled to pick up the packages and to have our organization as a source of support for their families.

Lombard Regional Office

DSCC's Lombard RO staff poses with blankets they made for caregiversThe Lombard RO made 17 cozy fleece blankets for the children staying at Almost Home Kids in Naperville.

Almost Home Kids provides transitional care in a home-like setting to children with complicated health needs, training for their families and respite care.

Lombard staff made the no-sew blankets during their breaks. They also donated three cases of water and multiple packs of Kleenex to add to the “Go Bags” that Almost Home Kids provides to their families.

Marion and Olney Regional Offices

DSCC's Marion and Olney RO staff pose with backpacks filled with items for family caregiversThe Marion and Olney ROs joined forces to create caregiver bags for families who have children in the NICU at Memorial Hospital of Carbondale.

One of the NICU nurses shared that families often need note pads, pens, snacks, warm socks, etc.

Marion and Olney staff donated enough of these items to fill 25 DSCC drawstring bags.

Mokena Regional Office

DSCC's Mokena RO staff prepare dinner at a homeless shelterOn Dec. 7, our Mokena RO team prepared and served dinner at the local PADS (Public Action to Delivery Shelter) at Zion Lutheran Church in Tinley Park.

PADS provides overnight shelter and meals for people who are homeless. Community partners, such as churches and congregations, provide sites for the shelter and teams of volunteers to run it from October to April.

Mokena staff made a dinner of homemade Sloppy Joes, roast turkey, plenty of sides and a dessert for approximately 30 women and children.

Peoria Regional Office

DSCC's Peoria RO staff pose with items they donated to Almost Home Kids. Peoria RO staff collected items off of the wish list for the newly opened Almost Home Kids at OSF Children’s Hospital of Illinois.

Almost Home Kids opened in Peoria in September. The 12-bedroom, 21,000-square-foot facility provides transitional care in a home-like setting for children with complex medical needs. It also provides training and respite care for their families.

Almost Home Kids is funded entirely through community donations.

Our Peoria staff purchased diapers, baby wipes, towels, coffee, children’s books, assorted toys and other supplies to help the children feel more at home.

Rockford Regional Office

DSCC's Rockford RO staff fill backpacks with items for family caregivers. The Rockford RO staff provided bags of comfort and a taste of home to the NICU families at Mercyhealth Rockford.

They donated money and purchased wish list items to make 25 backpack care packages.

Each bag contains a journal, pen, water, drink mix, calendar, hand sanitizer, Kleenex, chapstick, gum, granola bars, chicken soup and lotion.

Springfield Regional Office and Central Administrative Office

DSCC's Springfield RO and CAO staff pose after preparing dinner at the Ronald McDonald House in Springfield.Our Springfield RO and CAO staff worked together to prepare a meal for the families staying at the Ronald McDonald House Charities of Central Illinois in Springfield.

They decided on a pasta bar menu with sides and a dessert. Employees divided up portions of the menu to do the shopping ahead of time. A group of 11 prepared the meal at the house on Nov. 5.

The Springfield and CAO staff also collected donations to purchase a total of 33 gift cards for the families staying at the house to use at HSHS St. John’s Children’s Hospital’s dining facilities and coffee shops.

We are proud of our staff’s generosity and strong commitment to improving their local communities!