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.
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
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
https://www.jpsmjournal.com/article/S0885-3924(20)30635-7/fulltext
- Summary_What Do Parents Value Regarding Pediatric Palliative and Hospice Care in the Home Setting (pdf)
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
https://www.mdpi.com/908894
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
https://doi.org/10.1016/j.jpainsymman.2019.08.007
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.
https://doi.org/10.1016/j.chc.2018.05.011
