Using Cognitive Interviewing with Children with Disabilities

By Leyla Khastou, Linda Eddy, Kara Bogusz, Mark Harniss, and Dagmar Amtmann

Background:

Pain and fatigue (tiredness) are very common symptoms for kids and young adults with different disabilities. Researchers are focusing more and more on how to manage these problems, but there is still a lot of work to be done. Right now it is difficult to study and treat pain because doctors and researchers don’t always use the same words to describe it, and the pain surveys that are usually used with children were written to be used with adults.

Cognitive interviewing is one tool that researchers can use to learn about the problems in survey questions. With these interviews, researchers can find out why study participants answer certain questions the way that they do. This information can then be used to improve the survey questions.

Goal:

The goal of this study was to learn what young people with disabilities were thinking when they answered survey questions about their pain, fatigue, and other health problems, and to figure out which questions should and shouldn’t be used with them.

The Study:

Thirty-two children and young adults between the ages of 8 and 20 with long term health problems or disabilities volunteered to be interviewed about their pain and fatigue experiences. The interviews took place over the phone or in person, and included questions from both adult and child surveys. At the end of the interview, the participants were asked what they thought certain words and questions had meant, and what they were thinking when they gave their answers. An example of this type of cognitive interviewing question was: “What does the word ‘average’ mean to you?”

Parents were also asked to complete a questionnaire about their child’s experience with pain and fatigue, and about how the disability had affected the family.

Results and Conclusions:

The results of this study show that some of the language that was used with children to ask about their pain and fatigue experiences was not completely clear. Some of the questions that caused problems were those that asked the participants to think about their experience in “the past 7 days”. Almost half of all participants thought of a different time period, or had focused on specific days that stood out to them. The words “average” and “intense,” both words that are often used in pain surveys, also seemed to be confusing to some. This work shows that a greater focus on language that is understood by kids with disabilities needs to be used when creating questions for surveys.