Young adults with Type 1 diabetes needed for Brock study

Vanessa Sjaarda (BScN ’19) was training to be a cardiovascular technologist when the symptoms began — constant thirst, followed by dramatic weight loss. She ended up in hospital and was soon diagnosed with Type 1 diabetes.

Now, as she pursues her master’s research in Applied Health Sciences, the Brock University graduate student wants to make a difference in the lives of those faced with the disease.

Sjaarda is seeking young adults ages 18 to 30 with Type 1 diabetes to explore what traits they’d want in a prospective mentor. The goal of the project is to design an intervention to help those with the condition who may be struggling.

Type 1 diabetes, commonly referred to as juvenile or insulin-dependent diabetes, is a chronic condition where the pancreas produces little or no insulin by itself. Over time, this leads to serious damage to the heart, blood vessels, eyes, kidneys and nerves.

“It has been 10 years since I received this life-changing diagnosis,” says Sjaarda, who recognizes there are many others like her who received the news beyond childhood.

“While there is a lot of focus and research on kids with Type 1 diabetes, eventually we all become young adults and there is a knowledge gap for our age group,” she says.

At the time of her diagnosis, like many college and university students, Sjaarda was living on her own.

“When students move away for school, their lifestyle changes,” she says. “Eating and sleeping habits and schedules differ, family is not around as much, there are more opportunities to go to parties and start drinking. This creates extra health challenges for diabetics. At the same time, this is a key age when we are transitioned from pediatric diabetic care to adult care.”

Sjaarda, alongside her thesis supervisor, Associate Professor of Nursing Sheila O’Keefe-McCarthy, and community research partner, Dr. Andrea Delrue, Niagara Health, Niagara Diabetes Centre, is exploring how mentorship can provide support, improve quality of life and fill gaps.

“This is a disease that requires constant management and learning how to take care of yourself daily,” says Sjaarda. “Findings from my literature review emphasize there are high levels of emotional stress linked to the unending worries, burdens and concerns that occur when managing diabetes.”

These symptoms, defined as ‘diabetes distress,’ can lead to burnout as diabetics try to control their own physical and mental health. Issues of this nature are now “exacerbated during the COVID-19 pandemic,” says O’Keefe-McCarthy.

Findings also suggest increasing diabetes knowledge and psychosocial supports result in behaviour changes, which enable better management of the disease and improve mental health.

“The gap in the systematic review of peer-reviewed literature that we are specifically hoping to address looks at the efficacy of people who participated in a peer-to-peer coaching intervention and whether it did or didn’t enhance quality of life,” says Sjaarda, who, at the request of Delrue, became a mentor to a young person who was struggling.

“It’s so important to have someone to talk to,” Sjaarda says. “I am fortunate to have good family support and, at the time of diagnosis, my mom was already well-educated on Type 1 diabetes as my older sister has the same condition.”

For many years, Sjaarda lived in Ottawa while her family was in Niagara. This meant learning how to control her health through medical appointments with different doctors, nurse educators, dieticians and endocrinologists.

“It’s not surprising to learn that it was actually a nurse educator who first identified Vanessa’s strengths and suggested she consider going into nursing,” says O’Keefe-McCarthy. “It is this first-hand experiential knowledge of living with and learning to control her Type 1 diabetes that drives her commitment to her research.”

Driven to create an impactful study, the research team initially intended for participant recruitment and interviews to take place in a clinical setting. The COVID-19 pandemic has largely affected this approach as in-person interactions have been suspended since March 2020.

“Now with COVID, I’m meeting with young people online or through phone interviews,” explains Sjaarda. “Losing the opportunity to develop a face-to-face relationship, which is a key component of qualitative research, is not ideal but we are making it work.”

One of the notable changes to the research approach is now interviewees are afforded the opportunity to consider how COVID-19 is affecting how they are managing their diabetes, mental health, finances and support systems. Participant recruitment is now being done by snowball sampling or word of mouth. This has increased the geographic reach of the study beyond Niagara and throughout Ontario.

“Vanessa always acknowledges that health is paramount to diabetic-related morbidity and mortality,” says O’Keefe-McCarthy. “She genuinely wants to make a difference for others facing similar challenges. Her research will add to the development of a larger study to identify an intervention for this population and test its effect on young adults’ quality of life.”

The piece of the larger study that Sjaarda is working on aims to identify what mentorship means to each young participant and how the research team might go about creating a process that identifies suitable mentors.

To help explore what qualities or commonalities are important in a mentor, participants are being asked to reflect on their overall experience at the time of diagnosis, the kinds of supports they feel comfortable interacting with and how they would like to meet with a mentor.

“I chose to work with this age group because I’m a part of it. I’m a researcher who also has the disease I’m looking into. I’m both personally and academically invested in ensuring my participants have the best experience I can offer,” says Sjaarda.

The research project, “Requisite Characteristics of a Mentor to Establish Positive Relationships in a Type One Diabetes Intervention from the Mentee Perspective,” is seeking English-speaking study participants.

Young people ages 18 to 30 with Type 1 diabetes who are interested in participating in an online interview via Microsoft Teams are invited to email Sjaarda at before Wednesday, March 31. The conversation-style interviews typically take less than one hour and participants can choose to share as much or as little as they feel comfortable.

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