Courageous Parents Network is proud to work with provider-researchers who are investigating issues and questions common to the lived experience of families caring for very sick children.
The works listed below have involved the participation of CPN’s team, Board and Advisory Board members as co-authors, editors and/or advisors; and, at the request of our partners, families in the Network. In the latter case, CPN extends an invitation to families to participate, and families work directly with the Principal Investigators.
Association Between Children With Life-Threatening Conditions and Their Parents’ and Siblings’ Mental and Physical Health
JAMA Open Network, December 2021
Chris Feudtner, MD, PhD, MPH; Russell Nye, PhD; Jackelyn Y Boyden, PhD, MPH, RN; Katherine E Shwartz, MD; Emilie R. Korn, MD; Aaron G. Dewitt, MD; Amy T. Waldman, MD, MSCE; Lisa A. Schwartz, PhD; Yuming A. Shen, PhD; Michael Manocchia, PhD; Rui Xiao, PhD; Blyth T. Lord, EdM; Douglas Hill, PhD.
Parents as Advocates for Pediatric Palliative Care
Pediatrics, October 2021
Blyth Taylor Lord, EdM; Wynne Morrison, MD, MBE; Richard D. Goldstein, MD; Chris Feudtner, MD, PhD, MPH.
State of the science and future research directions in palliative and end-of-life care in pediatric cardiology: a report from the Harvard Radcliffe Accelerator Workshop
Cardiology in the Young, June 2021
Melissa Cousino, PhD; Blyth Lord, MEd; Elizabeth Blume, MD.
Supporting Families Considering Participation in a Clinical Trial: Parent-Provider Perspectives
Pediatrics, May 2021
Terence R. Flotte, MD; Blyth Taylor Lord, EdM; Jennifer Siedman, MEd.
What Do Parents Value Regarding Pediatric Palliative and Hospice Care in the Home Setting? Journal of Pain and Symptom Management, January 2021
Jackelyn Y. Boyden, PhD, MPH, RN; Mary Ersek, PhD, RN, FPCN; Janet A. Deatrick, PhD, RN, FAAN; Kimberley Widger, PhD, RN, CHPCN(C); Gwenn LaRagione, BSN, RN, CCM, CHPPN; Blyth Lord, EdM; Chris Feudtner, MD, PhD, MPH.
Honoring the Good Parent Intentions of Courageous Parents: A Thematic Summary from a US-Based National Survey
Children, December 2020, 7, 265
Meaghann S. Weaver, MD, MPH; Marie L. Neumann, MA; Blyth Lord, MEd; Lori Wiener, PhD, DCSW, LCSW-C; Junghyae Lee, PhD; Pamela S. Hinds, RN, PhD, FAAN.
Letter to the Editor: Parent Perspective and Response to Challenges and Priorities for Pediatric Palliative Care Research
Journal of Pain and Symptom Management, Volume 58, Issue 5, November, 2019.
Sandra Clancy, Blyth Lord, Michelle Moon, Brenda Murray, Kerri Padgett, Bob Searle, Jennifer Siedman, Barbara Swoyer.
Making Meaning After the Death of a Child
Child and Adolescent Psychiatric Clinics of North America, volume 27, Issue 4, October 2018.
Sandra Clancy, PhD; Blyth Lord, EdM.
