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Home and Community Care for Children with Medical Complexity

April 24, 2023

Family Connections with Pediatrics
Most care for children with medical complexity (CMC) happens in their home and community, with families providing high levels of care for their children. Many families report a lack of resources and training to deliver this care.1-3 In this month’s Pediatrics, the article, “Interventions in the Home and Community for Medically Complex Children: A Systematic Review,” reviews studies looking at how we support the care given to CMC in the home and community (10.1542/peds.2022-058352).

What is the purpose of this systematic review?
First, what is a systematic review? A systematic review is a formal process of looking at all the articles on a topic. In this article, the authors organized the papers in their review into categories using the “10 Domains of CMC Health” framework.4 The 10 domains of a healthy life for CMC are:

  • Basic needs
  • Inclusive education
  • Child social integration
  • Current child health-related quality of life
  • Long-term child and caregiver self-sufficiency
  • Family social integration
  • Community system supports
  • Health care system supports
  • High-quality patient-centered medical home
  • Family-centered care

The authors wanted to see if there are gaps in support for the care needed for a healthy life in the home and community. The authors grouped support activities, or interventions, into 5 strategies: intensive caregiver education, support groups, crisis simulation, mobile health tracking, and general education, and wanted to learn how results for support activities were measured.

What were the findings?
Here are just some of what the authors found:

  • Long-term self-sufficiency of caregivers was the most studied area. There were no studies that looked specifically at child self-sufficiency.
  • Caregiver education and support groups showed the best results when it comes to supporting care given in the home and community by families.

What is next?
This review points out several gaps, or areas needing more research:

  1. Activities to improve inclusive education and address basic needs of CMC in their home and community
  2. Healthcare delivery outside of the hospital and clinic settings to expand evidence base
  3. Siblings and the bigger network of people who provide care to CMC (not just parents)
  4. Diverse children with medical complexity

What can I do with this information?

  1. If you’re a family member caring for a child with medical complexity, ask your child’s doctor to connect you with opportunities for caregiver education and peer support.
  2. If you’re a healthcare professional or researcher, consider creating an activity to support care or research out into the community where a child lives, plays, and grows.


  1. Wang KK, Barnard A. Technology dependent children and their families: a review. J Adv Nurs. 2004;45(1):36-46
  2. Kirk S. Families experiences of caring at home for a technology-dependent child: a review of the literature. Child Care Health Dev. 1998;24(2)
  3. Nelson BB, Coller RJ, Saenz AA, et al. How avoidable are hospitalizations for children with medical complexity? Understanding parent perspectives. Acad Pediatr. 2016;16(6):579-586
  4. Barnert ES, Coller RJ, Nelson BB, et al. A Healthy Life for a Child With Medical Complexity: 10 Domains for Conceptualizing Health. Pediatrics. 2018;142(3)
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