Blogs Could Could Help Doctors Understand the Burden of Care

Researchers have identified a potentially novel approach to increase understanding and provide support for caregivers of children with type 1 diabetes (T1D) — online caregiver blogs.

As T1D incidence grows in children, so does the number of distressed parents and caregivers responsible for their support. Resources for these caregivers have historically been lacking, so many are turning to the internet, and blogs in particular, for peer support, according to a new study published in the Journal of Medical Internet Research.

Tamara Oser MD

Tamara Oser, MD

“Clinicians should recognize that social media, such as blogs, can provide a valuable narrative of the lived patient experience, and may help them to better understand the challenges their patients face,” said first author Tamara K Oser, MD, associate professor in the Department of Family and Community Medicine, Penn State College of Medicine.

Oser and colleagues analyzed 3 T1D caregiver blogs — including 140 unique blog posts and 663 associated comments – to better understand the challenges caregivers face in raising children with T1D. Additionally, 2 physician investigators evaluated all posts and comments to see whether they included inaccurate clinical or medical information.

Investigators found that misinformation in the blogs and comments was exceedingly rare and benign when it did occur. No instances of medical misinformation were identified among the 140 blog posts reviewed, and of the 663 comments included on the posts, only 2 contained possible medical misinformation.

“Clinicians should recognize that patients are turning to social media to find support and information. They should recognize that social media can provide valuable peer to peer support, but should encourage patients to discuss any changes to their medical regimen with their healthcare providers prior to implementing changes,” Oser told MD Magazine.

In their analysis, the authors were also able to identify 5 major themes across blogs and comments that could help improve the medical community’s understanding of the burden of care:

Fear and worry are common, starting at the time of diagnosis, and although the fears and worries change in ensuing years, these emotions persist.

According to the authors, parents described in great detail fear that their children might die of hypoglycemia, particularly at night when the child is sleeping. Many referred to the emotions they faced as they checked on their children in the middle of the night or first thing in the morning, wondering if their child is still alive.

Caregivers experience unrelenting physical and emotional burdens related to the intense management demands of caring for a child with T1D.

Study authors found that caregivers were challenged by the work involved with managing a condition that has a 24/7/365 presence, and commonly expressed a “worn-down” feeling from constantly “having to know what the blood sugars are.”

Caregivers use technology to help with self-management and the fear of hypoglycemia, and such technology is generally seen as quite helpful, but device alarms can also be intrusive and add to the burden felt by caregivers.

Many blog authors expressed excitement over new devices that might decrease their workload, saying, “it’s kind of odd, getting excited about a medical device, but it makes a crappy disease a little easier.” On the other hand, many parents shared their displeasure with a device that “beeps all the time.”

Many caregivers are especially bothered by what they perceive to be the frequently missed and/or delayed diagnosis of T1D.

There was an unusually large outpouring of comments by caregivers who recalled their child’s diagnosis as initially missed and/or substantially delayed. There were also strong feelings among T1D caregivers that in children who were only diagnosed in late (and quickly fatal) ketoacidosis, their deaths could have been prevented if the children had received glucose testing earlier in their illness.

Despite the fears and frustrations that caregivers experience, they demonstrate resilience, often through advocacy efforts and peer support through blogs.

Caregivers often encourage one another to “change the world” through “sharing their stories” and inspiring each other to “cure this thing!” the authors wrote. They also discussed the need to make their voices heard in political, industrial and community venues.

Notably, many caregivers who found blogs at the time of their child’s diagnosis described what an important and highly valued source of support the blogs offered. For example, one commenter wrote, “I found your blog early in our journey and it gave me so much more than you will ever know.” Another wrote, “Honestly I do not know what I would have done had I not found your blog.”

According to Oser and colleagues, the fact that youth with T1D depend so heavily upon their caregivers highlights the importance of parental support and wellbeing for optimal diabetes management. Blogs provide a unique avenue for that support, and may be a resource that diabetes care providers can consider offering to families.

"This study suggests that high-quality blogs can provide much-needed peer-to-peer support to caregivers of children with T1D, and other research is needed to verify that,” the authors wrote. “Blogs could be considered as an adjunct to in-person support groups and as a venue for support in the many geographic areas that do not have easy accessibility to endocrinology offices.”

The study, A Novel Approach to Identifying Barriers and Facilitators in Raising a Child With Type 1 Diabetes: Qualitative Analysis of Caregiver Blogs, was published October 26, 2017 in the Journal of Medical Internet Research.