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Improving Hospital Discharge Instructions for Children with Medical Complexity

November 21, 2023

Editor's Note: Danielle Gerber is the mother of a child with medical complexity and a Family Engagement Specialist at the Waisman Center in the University Center for Excellence in Developmental Disabilities at the University of Wisconsin Madison. -Cara L. Coleman, JD, MPH, Associate Editor, Pediatrics

Family Connections with Pediatrics

Caring for a child/children with medical complexity (CMC) is complicated. It involves constant juggling, like managing multiple specialists, medications, technology, devices, and equipment. When CMC are discharged from a hospital stay, their families often go home with a new list of changes to work into their already busy lives.

Discharge plans can be hard to understand and follow for many reasons. In my experience as a parent of a CMC, it seemed that each time we left the hospital we added a new piece of equipment, but without any additional support at home to teach us how to use it. In a new article in Pediatrics entitled, “Management of Discharge Instructions for Children with Medical Complexity: A Systematic Review,” the authors take a closer look at how to improve discharge (10.1542/peds.2023-061572).

What is a systematic review?
A systematic review collects and looks at all the articles on a topic. In this article, the authors wanted to understand more about the things that affect the way a family understands and follows discharge instructions for their CMC.

What are some things that might affect how or if a family understands the plan for hospital discharge?

With the hospital or care team:

  • Lack of communication among team members
  • Poor care coordination
  • Not including family in planning for hospital discharge
  • Lack of advance planning for hospital discharge day
  • Competing priorities of health care teams and families that distract and cause conflict
  • Timing for hospital discharge

Aspects of family life:

  • Multiple and mixed emotions, which are often made worse by stress, anxiety, and fatigue
  • Comfort and belief in own skills
  • Amount of experience caring for child
  • Balancing care and employment
  • Financial concerns
  • Quality of life for the child

What are some of the findings?

The authors found 5 categories of barriers that families face once they get home. Their research also found strategies to overcome barriers or obstacles.

Equipment/Supplies

  • Barriers: Coordinating home care, knowing how to use medical equipment, and finding funding for equipment
  • Strategies: Teaching families to use equipment correctly before hospital discharge, identifying programs (like Medicaid waivers) to help with costs

Medications

  • Barriers: Getting medications before hospital discharge, having issues with insurance, and a lack of understanding of when and how to give medications at home
  • Strategy: Teaching families and caregivers to create and track medication schedules

Appointments

  • Barriers: Challenges with appointments, including timing and transportation
  • Strategies: Educating families on how to make appointments, why the appointment is necessary, and communicating clearly in the families’ native languages

Who to Call with Questions

  • Barrier: Not having a care provider who understands the needs of a CMC at a high level
  • Strategy: Aligning the family with a primary care or complex care doctor comfortable caring for CMC to help with a verbal discussion of symptoms to watch for before a child goes home

Restrictions

  • Barrier: Activity restrictions for a child after discharge can be confusing
  • Strategy: Creating goals and clear instructions that the family can follow at home

What can you do with this article?

  • Being in the hospital with a CMC can be hard, but as much as the family would like to be home, being home and caring for a CMC without a hospital care team present can be even harder. If your child has been or is often in the hospital, read this article to know that you are not alone in challenges.
  • Share this article with your child’s doctors or at the hospital to talk about problems you have had with discharge and ways you can work together to do it better next time.
  • Do not be afraid to ask for help to create a discharge plan, ask questions, or ask to learn new skills written into the plan.

 

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