Child and Adolescent Preferences for Involvement in their Cancer Treatment Decisions
Families must make difficult treatment decisions throughout the course of childhood cancer therapy. Professional organizations promote the inclusion of children and adolescents in their own treatment decision making. However, researchers report that children and adolescents with cancer are not always involved in their own treatment decisions to the level that they would prefer. Additionally, there are no reported research findings that describe the impact that increased treatment decision involvement or lack of involvement has on the child or adolescent and their families. A critical barrier to advancing research in this area is the lack of a valid and reliable measure of how children and adolescents are or would prefer to be involved in their treatment decisions. In this study we propose to evaluate the reliability and validity of a newly developed measure that indexes the child and adolescent's preferences for involvement in making their own treatment decisions -- the Child and Adolescent Decision Involvement Scale (CADIS). We will evaluate the understandability, reliability and validity of the CADIS in a two part study using cognitive interviews with 15 children and adolescents in part 1 and followed by a field test of 100 children and adolescents with cancer ages 7-17 in the second part. A valid and reliable CADIS could be used in future research to contribute to our understanding of the complexities that surround the treatment decision making process for families facing childhood cancer and to develop interventions designed to support child and adolescent decision making preferences.
UPDATE: We spoke with Katherine Kelly, Ph.D., ALSF's July featured researcher, about her research developments on her funded 2012 Nurse Researcher Grant.
What were you initially studying with your grant funded by ALSF?
We are developing a way to measure a child or adolescent’s preferences for being involved in their cancer treatment decision making. From the literature and our previous research we know that children and adolescents’ treatment decision involvement varies from no involvement at all to actually making the treatment choice.
What have you found?
After completing the first phase of our study we have learned that the language we used to develop our measure needs to be modified for use in children and adolescents. Even though our measure was well supported by previous research findings, we have identified fundamental conceptual changes that need to be made so that it is relevant to the child or adolescent with cancer experience.
What does this mean for children with cancer and their families?
Once we complete our study we will have new knowledge about how children and adolescents with cancer want to be part of their treatment decisions, including how they want to receive information about their cancer and the required decisions. With this knowledge we will be able to develop new strategies to help clinicians and parents support the child’s optimal involvement in their treatment decision making throughout the cancer experience.
What are your next steps?
We are already preparing our next study that will involve applying our new measure in the clinical setting and seeing how it improves the child or adolescent’s coping.
Has this research been published?
At this time our findings are not yet ready for publication. We presented preliminary findings at the Association of Pediatric Hematology Oncology Nurses 2013 national meeting in Minneapolis, MN.
What has this grant from ALSF allowed you to do that you wouldn't be able to do otherwise?
Without the generous support of ALSF, we would not be able to devote the time and expense necessary to conduct the in-depth analysis of children and adolescents’ reactions to the new measure. With this funding we have discovered important differences in how children view their treatment decision involvement as compared to how the adults around them view it. With the more specific information we are learning from this study, we believe that we will be better able to help children cope with their cancer and be involved in their treatment decision making in the way that is most helpful to them. We will also have a strong measure that can be used in future research by our research team and others.
Why did you choose to work in this field/on this topic?
Throughout my clinical practice, I was involved in treatment discussions between the parent and physician and often stayed behind or returned later to help parents make sense of and cope with what they’d just learned. My early research focused on parents’ treatment decision making experiences. I have now turned to better understanding the child’s decision making needs so that in the future we will be able to direct clinical interventions to the whole family.