Florida: If a picture is worth a thousand words, UF Health Type 1 diabetes
researchers and their colleagues have tapped into an encyclopedia,
revealing new insights into how young people cope with the disease. The sophisticated scientific instrument? A camera. More than 13,000 children and teens are diagnosed with Type 1
diabetes each year. To find out more about their experiences as they
live with this chronic disorder, a group of diabetes researchers from
three universities, including the University of Florida, gave 40
adolescents disposable cameras and asked them to take pictures about
what diabetes means to them. They discovered key differences in
adolescents of different genders and socioeconomic classes that could
shape patient care and diabetes education, especially for boys and
less-affluent young people.
The findings, published in the journal Diabetes Spectrum in May, can
also help parents and families understand what their children are going
through as they learn to live with diabetes. In fact, the research team
is currently performing a similar study with parents of children who
have Type 1 diabetes to gain insights into the differences between
parental and child perspectives on the disease. The project, which began
in 2011 and concluded this year, included adolescents ages 12 to 19
from throughout Florida.
“While Type 1 diabetes research has rightly focused on the causes of
the disease and its national prevalence, there is a dire need for more
research that addresses children’s basic perspectives on living with
this disease,” said Ashby Walker, Ph.D., who was the chair of sociology
at Mars Hill University at the time the research was conducted but has
since joined the UF department of health outcomes & policy as a
research assistant professor. “The insights we gain by listening to them
will not only impact patient care and diabetes education, but they can
also help us address gender differences and the serious socioeconomic
disparities and complications we see in youths from low-income
households.”
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. For instance, one white male
participant wrote, “Diabetes means the burden of supplies,” and another
wrote, “Because this is my life now. Needles and medicine, needles and
medicine.”
Approximately half the adolescents also took pictures of their bodies
with bruises, calluses and pricked fingertips to display the physical
pain and bodily evidence of diabetes and wrote captions that illustrate
the pain and burden of the disease. For instance, one white female
participant wrote, “This is a scar. Diabetes is about learning to get
used to what hurts.”
“Dr. Walker and her team have undertaken an exciting and novel
approach to explore the challenges of adolescent youth with Type 1
diabetes,” said Desmond Schatz, M.D., a professor and associate chair of
pediatrics in the UF College of Medicine and the president-elect of the
American Diabetes Association. “What she found, through photographic
depiction, was that the vast majority of patients identified food and
preoccupation with food as one of the greatest challenges in day-to-day
living with the disease, which may lead to anxiety, depression, eating
disorders and poor blood glucose control. As such, her work highlights
the critical need for all health care providers taking care of children
and adolescents with Type 1 diabetes to address food-specific challenges
on an ongoing basis.”
For instance, male youth took more pictures of food and fewer
pictures of coping mechanisms than females. The researchers believe this
may have to do with larger cultural expectations surrounding gender
roles in America. 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.
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-to-1), and extracurricular
activities. However, 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.
Moreover, 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. For instance, one
white male wrote, “This shows that diabetes does not limit what you can
do in your life,” describing a photo of a map with red dots on places he
had traveled during the summer months.
“We believe this research can inform training for health care
providers by sensitizing them to the ways youth from different
socioeconomic classes perceive and experience the disease,” said Walker,
who has also received funding to examine the quality of care that
low-income children with Type 1 diabetes receive through public
insurance. “These photos demonstrate the importance of assisting
low-income youth by providing them with resources and perspectives that
encourage them to not be defined by their diagnosis.”
Other members of the research team include Cathryn Johnson, Ph.D., a
professor of sociology at Emory University; Janet H. Silverstein, M.D., a
professor of pediatrics at UF; Henry Rohrs, M.D., an assistant
professor of pediatrics at UF; and Shannon Lyles, R.N., a certified
diabetes educator and registered nurse specialist in the UF Health
department of pediatrics’ division of endocrinology.