Teen standing and reflecting

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A new study published in Patient Experience Journal, co-authored by Susan Horky, Laura E. Sherman, and two CMCH team members, Julie Polvinen and Dr. Michael Rich, describes using video narratives to learn about the illness experience of teens with Cystic Fibrosis (CF). According to this study, patients are the experts on living with illness and … have much to teach providers, who in turn, are experts on disease. Nineteen youths were given camcorders, and asked to “teach your doctor about your life” by recording their thoughts and feelings about undergoing CF treatments. The research method, pioneered by CMCH at Boston Children’s Hospital, is known as the Video Intervention/ Prevention Assessment (VIA). Some of the participants expressed that these CF treatments, which can last up to 4 hours a day, were a chore or a burden, taking away from time spent with friends and family, doing school work, and just being a normal teen. The resulting narratives reveal the reality and challenges of living with CF, which inform doctors about aspects of a patient’s life that cannot be learned during an office visit. One participant lamented, “They don’t understand what I do every morning because they don’t do it themselves,” and another exclaimed, “I actually have to do it.”

“They don’t understand what I do every morning because they don’t do it themselves.”

The study shows that teens with CF are more likely to adhere to regular treatment if they feel that their doctor can empathize with their daily struggles. Other factors that relate to regular adherence include parental support and establishing a daily routine. In addition, attitude and coping strategies play an important role. Participants who believed that their actions had an effect on their health, and those that compartmentalized their life from their illness, by choosing not to focus on CF or talk about it in public, were more likely to stick to their treatment regimens. VIA is a valuable tool that doctors can use to bring them closer to the patient experience through on-camera self-expression and reflection. To learn more about the use of VIA and patient-centered research on CF and other chronic illnesses and conditions, you can visit our Database of Research or click on the selected articles below.

VIA expands communication between patient and clinicians

  • Video narratives help patients express their experience with chronic illness and while giving doctors insight into patient life challenges.

Interviews and personal monologues with girls give insight into obesity and illness

  • This qualitative study of 14 adolescents, finds that obese girls express conflicting feelings about their health and weight.

VIA investigation on Quality of Life with Asthma

  • The use of VIA improves self-efficacy, increasing confidence and self-care.

 

 

 

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