The National Cancer Institute (NCI) at the National Institutes of Health (NIH) is conducting a research study to better understand suffering in pediatric, adolescent, and young adult oncology care. An essential aim of pediatric care is effective symptom management. Effective symptom management is not always achieved, and it is understood that poorly managed symptoms can lead to suffering.
Existing studies never explicitly define suffering. Therefore, the aim of this survey is to clarify what children, adolescents, and young adults with cancer, their caregivers, and health professionals caring for children with cancer mean when the term suffering is used. There are no right or wrong answers.
Completion of this brief survey is entirely voluntary. You have the option of not participating. You have the option to stop participating at any time. There are no expected significant risks associated with participation in this study. It is possible to feel discomfort answering some of the questions about suffering. No direct benefits are associated with the study; however, generalizable knowledge on how suffering is defined will be obtained which could potentially guide additional research and/or practice patterns going forward.
This SurveyMonkey survey will provide anonymous results. No IP addresses or identifying information will be collected. We will not know who participates and who does not. The responses to these survey questions will be stored in a secure database. We will do our best to make sure that your individual data is kept private. We anticipate it will take you about 5-10 minutes to complete this survey. You can save the survey and return to it later. This survey works best on Google Chrome, though it may be taken on any browser.
If you have any questions about this survey, please contact Dr. Lori Wiener, study Principal Investigator, at lori.wiener@nih.gov.
Existing studies never explicitly define suffering. Therefore, the aim of this survey is to clarify what children, adolescents, and young adults with cancer, their caregivers, and health professionals caring for children with cancer mean when the term suffering is used. There are no right or wrong answers.
Completion of this brief survey is entirely voluntary. You have the option of not participating. You have the option to stop participating at any time. There are no expected significant risks associated with participation in this study. It is possible to feel discomfort answering some of the questions about suffering. No direct benefits are associated with the study; however, generalizable knowledge on how suffering is defined will be obtained which could potentially guide additional research and/or practice patterns going forward.
This SurveyMonkey survey will provide anonymous results. No IP addresses or identifying information will be collected. We will not know who participates and who does not. The responses to these survey questions will be stored in a secure database. We will do our best to make sure that your individual data is kept private. We anticipate it will take you about 5-10 minutes to complete this survey. You can save the survey and return to it later. This survey works best on Google Chrome, though it may be taken on any browser.
If you have any questions about this survey, please contact Dr. Lori Wiener, study Principal Investigator, at lori.wiener@nih.gov.