The use of photography by adolescents with type 1 diabetes to express how they cope with the disease offers clinicians a nontraditional way to improve care delivery and better identify focus areas, according to research in Diabetes Spectrum.
In an exploratory study involving adolescents of various socioeconomic backgrounds who took photos to explain life with type 1 diabetes, researchers found adolescents were most likely to depict the challenges of the disease, including diabetes supplies, food as a source of frustration, injuries to the body, and symbols of resilience, including coping mechanisms.
“Youth living with type 1 diabetes are the true experts on what it is like to live with this disease,” Ashby Walker, PhD, of the University of Florida College of Medicine in Gainesville, told Endocrine Today. “As such, their perspectives and voices should be central to considerations for clinical care, therapeutic interventions and basic awareness about type 1 diabetes. Using methods that are appropriate and accessible for adolescents is key to gaining such insight, and photography is one way to tap those perspectives.”
Walker and colleagues analyzed data from 40 adolescents aged 12 to 19 years (mean age, 15 years) with type 1 diabetes for at least 2 years. Researchers provided all participants with a parent survey, youth survey and disposable cameras, along with a postage-paid envelope to return the completed materials, and asked participants to take five photos each that best explain “what diabetes means to you.” All participants who returned completed materials received a $30 money order.
Five main types of representation were revealed after content analysis of the photos and narrative, and the researchers characterized them under themes of “challenge” and “resilience.” Diabetes supplies as tethering (30% of photos), food as a source of frustration (28%) and the body as territory for disease encroachment (10%) were classified as challenges photos, whereas coping mechanisms (18%) and symbols of resistance (12%) were classified as resilience.
The most common photos were of diabetes supplies, according to researchers, with 88% of participants taking at least one photo of needles/syringes, meters, pumps, insulin, test kits and other materials specific to managing diabetes. Accompanying narratives focused on the day-to-day struggles of managing the disease. Captions included “Diabetes means the burden of supplies,” and “This is my life now. Needles and medicine, needles and medicine.”
Within the cohort, 53% of participants took at least one photo of a coping behavior or activity, including a family member, friend or pet as support, extracurricular activities and reading the Bible.
Boys took more photos of food than girls (P < .005) and had fewer coping depictions (P < .05), whereas participants from more affluent households were more likely to take photos that represented resistance (P < .05).
“Youth indicated that extracurricular activities and their pets are two types of coping mechanisms that they find particularly helpful,” Walker said. “This knowledge could be helpful in diabetes education efforts, especially for new onsets. These findings also reify the important role dietitians play in providing education specific to food and social aspects of food and eating that will impact the entire family.”
Researchers are currently analyzing a similar parental/caregiver photo project to gain more insight on the similarities and differences in perceptions of type 1 diabetes, Walker said.
“Efforts to identify meaningful interventions aimed at reducing disparities in pediatric diabetes need to be developed,” Walker said. “All youths, regardless of [socioeconomic status], need to find meaningful pathways to resilience through activities and social experiences that help mitigate the hardships of type 1 diabetes.” – by Regina Schaffer
The researchers report no relevant financial disclosures.