Courageous Parents Network recognizes that the one of the important ways to improve the experiences of families of seriously ill children is to participate in research. While individual parents may think things are obvious, the field only advances through methodical, process-driven, reviewed and validated research.
Towards that end, CPN encourages parents to participate as they feel willing and able. Here is such an opportunity, specifically for bereaved parents of children who had cancer and brain tumor:
Researchers at Yale School of Medicine are conducting the MyPAC (My Priorities in caring for children with Advanced Cancer) Study to identify ways to measure and improve the quality of healthcare children with cancer receive, particularly near end of life. After speaking with patients, parents, and healthcare professionals about what is most important for a healthcare team to focus on when a child has incurable cancer, the researchers created a list of possible quality measures. Quality measures help determine how well we provide healthcare and allow us to do better in caring for children and families.
If you have lost a child to cancer, we would appreciate the opportunity to hear your perspectives on the quality measures you think are most important. This will help us ensure that all children with advanced or incurable cancer receive high quality care.
Who can be a part of this study?
Parents in the United States who have lost a child to cancer are invited to participate in this study.
What are the goals of this study?
The goal of this study is to identify which quality measures for children with advanced, or incurable, cancer, are most important.
What will participants be asked to do?
Participants will be asked to complete a brief, confidential online survey. The survey will take approximately 10-15 minutes to complete.
What will participants receive in this study?
Upon completion of the survey, participants will receive a $25 electronic gift card.
Who should I contact in order to participate?
If you are interested in participating, please complete this brief eligibility survey and a member of the research team will be in touch with you shortly. For more information, you are welcome to visit the study website or to reach out to the team directly at firstname.lastname@example.org.
Thank you very much for your consideration,
Prasanna Ananth, MD
Pediatric oncologist and palliative care researcher