Research and Publications

Courageous Parents Network deeply values community engagement in research. Participatory research is a process in which members of the population being studied are subject matter experts and collaborators, rather than just participants in the research. CPN brings to this research the perspective of parents and caregivers of children with a serious medical condition, including rare disease and life-limiting illness. 

The engagement of parents and caregivers in research can happen at any time in the research process, and CPN believes that earlier involvement is beneficial. Parents and caregivers bring forth deep and varied perspectives. They are unique in their position as they have developed expertise across the entire caregiving journey, whereas researchers typically investigate a specific aspect or period of time within the pediatric patient’s life. Parents can work with researchers to develop research questions, identify ways to collect the most relevant data from participants, bring advice to help overcome barriers to research participation, and even provide insights on the interpretation of study outcomes. In short, involving parents and caregivers in research helps ensure that the findings are meaningful, relevant and helpful to all the constituents the study is intended to serve.

Courageous Parents Network partners with researchers from all disciplines who are committed to better outcomes for families affected by pediatric medical conditions. 

If you are interested in working with Courageous Parents Network, please contact connect@courageousparentsnetwork.org. 

Below are some of the studies that the organization has proudly collaborated in:

Proceeding From a National Workshop and Future Directions for Pediatric Palliative Care Research
Journal of Pain and Symptom Management, 2026
Bogetz JF, Snaman JM, Lord B, Kirch R, Rosenberg AR

A photo-narrative intervention protocol for clinicians and parents of children with severe neurological impairment in the PICU
Contemporary Clinical Trials Communication, 2025
Bogetz J, Ayala E, Anderson J, Morris L, Barton KS, Bradford MC, Zhou C, Yi-Frazier J, Watson RS, Rosenberg AR

A Photo-Narrative Intervention for Children With Severe Neurological Impairment in the PICU
Journal of Pain and Symptom Management, 2025
Bogetz J, Oslin E, Meissner E, Trowbridge A, Anderson J, Morris L, Barton KS, Yi-Frazier J, Watson RS, Rosenberg AR

Asset-Based Health Care for Children With Severe Neurologic Impairment
Pediatrics, 2022
Morris EL, Hauer J, Bogetz JF

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, EdM; 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, EdM; 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