About

Renee Boss, MD, MHS, is the Rembrandt Foundation Professor of Pediatric Palliative Care and a Professor of Pediatrics at Johns Hopkins University School of Medicine. She is a faculty member at the Johns Hopkins Berman Institute of Bioethics and has a special expertise in neonatal palliative care. Dr. Boss founded the Palliative Care Working Group in the division of Neonatal-Perinatal Medicine and is a member of the Maryland Pediatric Palliative Care Coalition and the American Academy of Hospice and Palliative Medicine. She also sits on the Johns Hopkins Ethics Committee. Her research interests include neonatal palliative care, critical care, neonatology, clinician-to-parent communication, and pediatric chronic critical illness. Dr. Boss leads the Pediatric Chronic Critical Illness Collaborative, a multicenter research group focused on expanding knowledge and care for children with repeated and prolonged hospitalizations. She has received awards such as the Young Investigators Award from the American Academy of Hospice and Palliative Medicine and has been published in several peer-reviewed journals.

Research topics

• Medicine
• Family medicine
• Nursing
• Pediatrics
• Psychology

Selected publications

• Life with pediatric home ventilation: Expectations versus experience

  Pediatric Pulmonology · 2021 · 44 citations

  • Medicine
  • Intensive care medicine
  • Pediatrics

  OBJECTIVES: To explore the family experience of home ventilation through a comparison of anticipated home life changes with subsequent experiences. STUDY DESIGN: Guided interviews with parents across three states who chose home ventilation for their child within the last 5 years. PATIENT-SUBJECT SELECTION: Purposive sampling of parents who chose home ventilation for their child within the last 5 years. METHODS: Interviews were transcribed for qualitative analysis and analyzed for thematic saturation and prevalence of codes. RESULTS: Twenty families were interviewed. Families generally reported not considering potential home life changes when facing the decision about home ventilation; instead, they worried most about medical management. These concerns reversed in importance later. Families learned medical management quickly but felt largely unprepared for the extensive changes to their home life, including isolation, altered relationships with extended family and community, effects on siblings, financial strain, and need for physical changes to their house. Families had not anticipated how much they would be affected by home healthcare as a new part of their life. CONCLUSIONS: The priorities that families consider during decisions about pediatric home ventilation may not be aligned with the actual home experience of this technology. Given that the success of home ventilation largely rests with the family's care, family expectations for home life adaptations must be augmented, as should postdischarge supports for families with complex home care experiences.

  PublisherDOI

• Family Experiences Deciding For and Against Pediatric Home Ventilation

  The Journal of Pediatrics · 2020 · 34 citations

  • Medicine
  • Intensive care medicine
  • Medical emergency
  PublisherDOI

Frequent coauthors

• Pamela Donohue

  Johns Hopkins University

  11 shared

• Sara Muñoz-Blanco

  6 shared

• Nancy Hutton

  Johns Hopkins Medicine

  5 shared

• Rebecca R. Seltzer

  Johns Hopkins Berman Institute of Bioethics

  4 shared

• Emily Hahn

  4 shared

• Jessica C. Raisanen

  Ashland (United States)

  4 shared

• Miriam Shapiro

  University of Minnesota

  3 shared

• Carrie M. Henderson

  Louisiana State University

  2 shared

Awards & honors

• Young Investigators Award from the American Academy of Hospi…

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