CPN | Collaborations and Co-Authorship in Research

Collaborations and Co-Authorship in Research

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, Wynne MorrisonRichard D. Goldstein and Chris Feudtner


State of the science and future research directions in palliative and end-of-life care in paediatric cardiology: a report from the Harvard Radcliffe Accelerator Workshop. Cardiology in the Young, June 2021

Melissa Cousino, PhD, Blyth Lord, Elizabeth Blume MD .

Cousino et al 2021 Radcliffe State of the Science


Supporting Families Considering Participation in a Clinical Trial: Parent-Provider Perspectives.

Pediatrics. May 2021

Terence R. FlotteBlyth Taylor Lord and Jennifer Siedman


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.