When children are diagnosed with type 1 diabetes – one of the most common chronic conditions of childhood – parents typically shoulder the burden of managing their care.
This includes a rigorous daily routine of supervising what the child eats, checking blood sugar levels, administering insulin and keeping regular medical appointments. It’s a big job, and as children become independent adults, it’s one they must gradually take upon themselves.
The Madison Clinic aims to improve the lives of patients and their families and to ease the burden of diabetes through compassionate and individualized management with emphasis on education, empowerment, and use of advanced technologies.
This process of “transition” is important for maintaining optimal health, and it is highly influenced by socio-economic and cultural factors.
UCSF psychologist Diana Naranjo, PhD, an assistant professor of pediatrics, is particularly interested in how the health care transition occurs in ethnic minority families. Her work is part of a broad effort to smooth the transition process for all young adult patients at the Madison Clinic for Pediatric Diabetes at UCSF Benioff Children’s Hospital.
An Extra Developmental Challenge
Patients in the transitional age group – 18 through 30 – face special challenges when it comes to managing their diabetes.
Diana Naranjo, PhD
“Young adults, who are still evolving decision-making skills, often feel ‘I’ve been dealing with this my whole life. I want it to go away,’” said Naranjo.
An autoimmune disorder in which the body attacks the pancreas, type 1 diabetes requires that patients take over the metabolic balancing act that this organ performs in healthy individuals. That requires a daunting series of tasks that must be performed every day. If poorly controlled, the disease can cause serious short and long-term consequences.
Managing type 1 diabetes often conflicts with normal developmental behaviors, said Naranjo.
Experimentation with drinking alcohol, for example, has extra risks for youth with diabetes because it can affect blood sugars and impair judgment. Young people may also struggle with how to disclose the demands of their disease when starting an intimate relationship.
Guiding the Transition Process
The Madison Clinic is working to ease the transition process for all its young adult patients. These efforts are led by a team that includes pediatric diabetes specialists Saleh Adi, MD and Stephen Gitelman, MD, endocrinologist Roger Long, MD, and Megumi Okumura, MD, a specialist in chronic disease management.
Patients complete an annual survey that Naranjo and the team have developed that helps identify how much teen and young adult patients know about their disease – with questions about their knowledge of medical management, insurance, sex and drugs.
Transition coordinator Marcela Arregui-Reyes sits down with every patient age 16 or older to complete the survey and prioritizes specific areas where more education is needed. With most patients making four visits to the clinic each year, the goal is to fill in the most important educational gaps at each visit.
How Transition Differs for Minority Families
Ethnic minority patients in the transitional age group often wrestle with additional challenges, according to Naranjo.
As they reach adulthood and age out of public healthcare systems for children with chronic illness, some may be left uninsured or with very limited healthcare options. This can lead to poor diabetes management and higher utilization of emergency room services.
Madison Clinic for Pediatric Diabetes at UCSF’s Mission
Naranjo, who is fluent in Spanish, has a special interest in cultural differences in patients’ perceptions about diabetes and its care.
The Madison Clinic serves a higher-than-average percentage of minority patients with type 1 diabetes, making it a good site for researching these differences. Roughly 25 percent of the clinic’s families are Latino, and African-American families are proportionately higher than in the overall U.S. population of patients with diabetes.
Naranjo has gathered detailed information from 20 clinic families so far, using a combination of surveys and in-depth interviews with patients and family members. One emerging pattern, according to Naranjo, is that Latino parents do not necessarily value transition in the same way that the medical world does. The transition model used in medical settings is designed to help young adults take over monitoring their health, making their own appointments and interfacing with insurance companies or other agencies.
“Latino parents often wonder ‘Why should I burden my child in that way?’” said Naranjo. Many Latino families continue living together longer into adulthood than non-Latino families, and consequently, parents continue to play a big role in their young adult’s diabetes management.
Latino children may also look at the transition process differently, particularly if their parents are uninsured and struggling to treat their own chronic health problems, such as high blood pressure or type 2 diabetes.
Naranjo will continue her research in the coming year. In the meantime, her findings suggest that health transition specialists may need to tailor the information they give to minority families to match different perceptions of living with a chronic disease.