Parents can ask, "How do you feel today?" Friends can ask, "Does it hurt to use a needle?" But only a young person living with juvenile diabetes — they make up 5 percent of Americans who have diabetes — intimately understands what it feels like to live with constant reminders of your fragility or dread lunchroom encounters with cakes, juices, and sodas.
Researchers at the University of Florida Department of Health Outcomes & Policy gave disposable cameras to 40 patients with Type 1 diabetes, ages 12 to 19, in an effort to improve patient care by gaining insight into the patient experience.
The stories and photos patients shared — and what researchers learned along the way
Most pediatric patient studies rely on the use of direct, closed-ended questions, but this study is very different: researchers allowed patients to document themselves in an open-ended manner, "capturing the voice" of patients who prompted themselves proactively. Instructions to participants began as such: "You know better than anyone what it is like to live with diabetes, and your involvement in this study will allow us to better understand your experiences."
Quotations, descriptions, and photos are courtesy of the University of Florida and shared by permission.
Pictures are worth a thousand needle pricks
The most common pictures were of diabetes supplies, with 88 percent of youth taking at least one picture of needles, syringes, meters, pumps, insulin, ketone strips, test kits and other materials for managing diabetes. The accompanying captions focused mainly on the unavoidable presence of these supplies in the youths’ lives and the annoyance surrounding that fact.
Gender role expectations for teenagers are displayed through coping mechanisms
Male youth took more pictures of food and fewer pictures of coping mechanisms than females. ... Over half of the participants also took at least one coping mechanism photo, including leisure activities, person and pet support systems (with pets outnumbering photos of people 3:1), and extracurricular activities.
Research shows that limiting caloric intake and a general concern over nutrition is seen as feminized behavior, which may create awkwardness for male youth in social situations and explain, in part, why challenges associated with food occurred more frequently in their photos. Gender expectations could also explain why certain coping mechanisms like journaling or artistic expression occurred less frequently in young men’s photos due to norms surrounding expressing and showing emotion.
Parental income makes a tangible, direct impact on children with diabetes
All nine photos of extracurricular activities were taken by youth with household incomes more than $80,000. For instance, one white female wrote, "Music is my escape of diabetes. It makes me feel normal," to accompany a picture of her violin. ... Youth from more affluent households were more likely to take photos with symbols of resistance. The resistance photos and captions showed how the adolescents overcome the hardships associated with diabetes and sought to show how they would not be defined or limited by their diagnosis.
More than half the adolescents took at least one resilience photo, but affluent youth were more likely to take these pictures than those from lower socioeconomic levels.
Foods can turn from a delight into an enemy you dread encountering
Sixty-eight of participants took photos of food such as candy, breads, and cakes, presenting nearly a third of the total photos taken in the project. While this study didn't track anxiety levels, there's no doubt that the constancy of daily negative emotional triggers would change how anyone approaches challenges in life.
Researchers concluded the study by noting that "photo representations could better train health care providers and caregivers about the ways in which diabetes is experienced by young people."