When a child is diagnosed with cancer, the focus for the child and the family is naturally on the treatment—whether it will work, what it will entail. And until that treatment process is done, there’s not much reason to look beyond it. But once they get to the end of treatment, parents and kids have lots of questions and issues to consider.
“It’s a time of both celebration and anxiety,” says Mary Keller, MSN, RN, a Clinical Nurse Specialist at Connecticut Children’s Center for Cancer & Blood Disorders. “Parents and patients say, ‘What do I do now, when I’m used to calling here for all the answers?’”
Keller and other nurses in the Center for Cancer & Blood Disorders want to be able to provide the after-treatment care that these families need, but to do that, they have to know what that need is. So, the nurses launched a research project to find out.
The first step was reviewing the scientific literature to see if anyone had already done this work. Surprisingly, there was almost nothing. They did find one short questionnaire that had been put together, but it was only given to parents, not children, and it had not been validated. Validation is a formal process where a given research questionnaire is tested to be sure that it will, in fact, produce the information it aims for, that the answers will be valid and the test can reliably be repeated.
Creating a Questionnaire
The oncology nurses set out to make their own questionnaire, one that would withstand the validation process. They worked with a nurse scientist from the Institute of Nursing Research at Connecticut Children’s and enlisted members of the Oncology Family Advisory Board (FAB), which is made up of patients’ parents. They conducted a series of focus groups with FAB members, where they presented information they hoped to gather from the questionnaires, and asked FAB members to evaluate each questionnaire item.
“What we found,” says Keller, who is the principal investigator for the project, “is that parents and kids have educational needs and they have psychosocial needs: What do you do about the worries? Is there support for them afterwards? What about transitioning back to school or work?”
There are questions about what might be the best timing for after-care intervention and the best mode for delivering that help—someone talking to them, written information, a follow-up phone call, or something else.
Initially, they developed two questionnaires: one for parents and one for kids. But the evaluations made it clear that the kids’ form covered far too large an age range, from 8 to 21 years. So, they created a third questionnaire for adolescents and young adults. “Their language is different,” Keller says, “and there were some concepts that we put in the adolescent/young adult and parent questionnaires that aren’t in the child questionnaires. For example, questions about fertility or transitioning back to school or work.”
With the questions pinned down, the nurses started using the questionnaire. And now, 18 months later, they are analyzing the results. In the meantime, they wrote a research paper about their process. That paper is about to be published in the Journal of Pediatric Oncology Nursing.
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