Pediatric Home Healthcare for Children with Chronic Critical Illness

Documenting pediatric home health care barriers and facilitators to help children live at home with their families

The availability of home health care, including home nursing and durable medical equipment, is the core issue determining whether children with medical issues are able to spend time in their family homes vs. in inpatient settings. Many questions remain regarding pediatric home health care, especially from the perspective of those with the most direct knowledge—home providers, and the families receiving home health services.


  • Describe home health care services for children, including the range of medical & social needs of children with medical needs while at home, barriers to delivering pediatric home health care services, and facilitators that improve delivery.

Methodology & Progress

We interviewed 45 professionals and 47 families caring for children with home care needs across the United States about pediatric home health care in their area. Parents were recruited through listservs and newsletters of family advocacy organizations. Professionals were recruited from a range of backgrounds (e.g. inpatient and outpatient clinicians/case managers, home care administrators, in-home providers, and others) by purposive and snowball sampling. Interviews were audiotaped, transcribed, and analyzed to inform recommendations for policy and practice.

Clarifying and Facilitating Pediatric Home Healthcare to Improve the Lives of Children with Serious Illnesses and their Families
  • Raisanen, J.C., Fratantoni, K., Donohue, P.K., Miller, J., Detwiler, K., Neubauer, K., Huff, S., Boss, R.D. (2019). University of Maryland School of Nursing, Home and Community Based Vare Symposium. Baltimore, MD. (Poster presented by J.C. Raisanen).
Home Healthcare for Children with Chronic Critical Illnesses: Challenges and the way forward
  • Donohue, P.K. (2019). CityWide Neonatology Research Conference Series. Baltimore, MD.
Helping Children with Medical Complexity Live at Home with their Families
  • Huff, S.M.*, Raisanen, J.C.*, Fratantoni, K., Donohue, P.K., Detwiler, K., Miller, J., Neubauer, K., Boss, R.D. (2019). Nursing of Children Network’s Regional Pediatric Nursing Conference. Wilmington, DE. (Speakers: S.M. Huff & J.C. Raisanen)
Paying for Pediatric Home Health Care: How families of children with medical complexity navigate gaps in coverage. Fam Comm Health 2021. 73.
  • Raisanen J, Ruth A, Donohue PK, Detwiler K, Fratantoni K, Huff S, Boss RD.
The Pediatric Home Health Care Process: Perspectives of Prescribers, Providers, and Recipients
  • Fratantoni, K., Raisanen, J.C., Boss, R.D., Miller, J., Detwiler, K., Huff, S.M., Neubauer, K., Donohue, P.K. (2019). Pediatrics. 
Lived Experiences of Pediatric Home Health Care Among Families of Children with Medical Complexity
  • Boss, R.D., Raisanen, J.C., Detwiler, K., Fratantoni, K., Huff, S.M., Neubauer, K., Donohue, P.K. (2019). Clinical Pediatrics. 

Core Team

Renee D. Boss, MD, MHS

Johns Hopkins School of Medicine, Johns Hopkins Berman Institute of Bioethics

Pamela K. Donohue, ScD, MS

Johns Hopkins School of Medicine, Johns Hopkins Bloomberg School of Public Health

Kate Detwiler

Children’s National Health System, Parent of a Child with Medical Complexity

Karen Fratantoni, MD, MPH

Children’s National Health System

Susan M. Huff, MSN, RN

Johns Hopkins Home Care Group

Kate Neubauer, MD

Johns Hopkins School of Medicine, Johns Hopkins Berman Institute of Bioethics

Jessica C. Raisanen, MSPH

Johns Hopkins Berman Institute of Bioethics