‘Passport’ helps parents plan move from hospital to home

Over the next few months, CAPHC Conversations will feature stories from BLOOM, Holland Bloorview Kids Rehabilitation Hospital’s online resource for parenting children with disabilities. For more information, please contact BLOOM editor Louise Kinross at 416 424 3866.
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A parent who spent 16 months at her daughter’s bedside at Holland Bloorview has given a gift to other parents of inpatients.

The Transition Passport is a binder that helps parents organize their child’s health information and plan for the extensive equipment and supports they may need to move back home.

The idea came from Sadia Qureshi, whose daughter Zoya had been a healthy six-year-old until she woke one morning seizing. After two months in acute-care, where she continued to seize and was intubated, she came to Holland Bloorview.

“We had no idea where we would go from here, that there would be life after Holland Bloorview,” Sadia says.

The passport organizes what parents need into sections: checklists of equipment and medication; funding sources and school planning; a place to record important dates, keep therapy schedules and take team meeting notes; and a holder for business cards for key staff who work with your child.

“As a parent who had never been through this, I didn’t know what equipment we would need at home, or even that funding was available,” Sadia says. “I didn’t know that schooling for Zoya would be a choice. I didn’t know it was possible to live in your home with support. The passport has checklists you can go through with your physiotherapist or nurse or social worker to help you plan according to your child’s needs.”

The process of moving home with Zoya was “very difficult, long and not easy,” Sadia says. She often didn’t realize that she needed certain things until she took Zoya home for short trial stays. “It’s hard to know what to expect. The passport will help parents pre-plan, so it won’t be as stressful or take as long.”

Sadia worked with a discharge steering committee at Holland Bloorview to bring the binder to life.

“Being part of this group was a wonderful experience,” she says. “I shared everything—what was great about our transition experience, what we need to work on, and what I think will be most appropriate for parents.”

Anna Marie Batelaan, social worker on the brain injury rehab team, says families “are finding it extremely useful as a way to keep organized and keep all of their documents from acute care and here in one place. For a lot of them the health care system is new and foreign. Many families come in with a shopping bag full of reports and they have trouble laying their fingers on what they want to show you. This binder gives them a framework for keeping it all in one place. They keep reports, home programs and medication lists in there. It’s one location where you can put everything. I have families who have moved home who continue to use it as outpatients, so they don’t have to keep track of everything in their own head.”

The Transition Passport team received the Sheila Jarvis Impact on Client and Family Centred Care Award for 2016. You can download your own copy or ask your social worker for one.

“Our goal is that this will assist families in partnership with their clinical team—not just with organizing information, but with helping them prepare for meetings and ask the questions that are important to them,” says Elaine Widgett, interim senior director of inpatient rehabilitation.

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The CAPHC team is always interested in learning more about what is happening in the paediatric health care community. If you have a program, event, website, or initiative that you would like to share with the country, email info@caphc.org for more information.