Pediatric oncologists, parents must keep open dialogue about social media support

Parents of children with cancer often turn to social media to seek support from other families going through similar situations, according to study results.

Researchers from Roswell Park Cancer Institute examined the public Facebook pages of parents of children with acute lymphoblastic leukemia between May 2012 and May 2013.

Lynda Kwon Beaupin

Investigators reviewed more than 15,000 Facebook posts and identified six key themes: documenting the cancer journey, fundraising, expressing gratitude for support, mobilizing support, promoting awareness and advocacy about pediatric cancer, and sharing emotional strain associated with caregiving.

“Providers must recognize the importance of social media as a vehicle for support and communication for families of children with cancer,” Lynda Kwon Beaupin, MD, assistant professor of oncology in the department of pediatrics at Roswell Park, and colleagues wrote. “Nurses should educate parents on how to appraise information obtained through Facebook using evidence-based guidelines. Providers can encourage caregivers to use Facebook as a tool for communication, information and support.”

Beaupin spoke with HemOnc Today about the benefits and potential drawbacks of social media for pediatric cancer support, as well as the responsibilities health care providers have to direct parents and patients to valid resources to make sure they are not misinformed.

Question: How did the idea for this study come about?

Answer: I collaborate with Elizabeth Gage-Bouchard, PhD, associate member of cancer prevention and control at Roswell Park, who is the primary author on this paper. She has been looking at the relationship between families of pediatric patients with cancer for a while. I brought up how I noticed a lot of our patients were utilizing Facebook to chronicle their experience of pediatric cancer, and it was mostly moms of patients who were creating and running these pages. Some of our parents were asking about things they learned from other parents via Facebook. I was really interested to find out how we could study this.

Q: How beneficial is social media for pediatric cancer support?

A: Our study shows that social media is widely used by families. We are learning that they provide a lot of support for each other and a lot of awareness about their disease. They also share words of encouragement for each other. The benefit of social media for pediatric cancer is huge. Families have told me the social connections they have made provided them great strength during difficult times in their child’s cancer journey. Patients tell me how cool it is that they connected with another patient from far away, or how an organization or a sports team started following them and sending them messages and mail. They get very excited about this. It has a significantly positive impact on an otherwise negative situation. Parents relay that these connections made via Facebook — which may not have been made otherwise — is uplifting for their children. The benefit of social media allows patients and families to easily connect with others who understand firsthand what the other is going through.

Q: Are there any potential drawbacks?

A: Our study showed that, although a lot of positive information is being shared and they are being supportive of each other, there is some exchanges of medical information among parents and families that are not entirely reliable, and some are even anecdotal. For example, although I believe there are many integrative or complementary therapies that may help with symptom management, most are not scientifically proven. However, some may share their personal experience and advise its use without fully understanding that someone with the same disease may be going through a completely different experience. So, one drawback is that a lot of information is being shared that may not be accurate, which is concerning.

Q: What responsibilities do clinicians have to direct parents to valid resources so they do not get misinformed?

A: It is important for clinicians to know that patients are not only looking to the internet for information, but they are now seeking out other families and patients who may be going through something similar and finding health information this way. This helps us to realize we should not just be guiding patients to reliable websites to learn about their disease, but also let them know and forewarn them that a lot of information being exchanged on social media may not be accurate. It is a great resource for many families, but they need to be cautious. As clinicians, we should encourage patients and families to share with us what they have learned from other families so we can discuss it. We can also start asking them what they have learned from websites and social media.

Q: What might future research entail?

A: This specific study was focused on families of children with acute lymphoblastic leukemia. This is the most common type of cancer we see in children, but we certainly are interested in other cancer types, as well as other patient populations. For example, adolescents and young adults are an interesting population and they may have Facebook pages of their own. It will be interesting to study the information being exchanged in these different populations.

Q: Is there anything else that you would like to mention ?

A : Oncologists these days need to be very mindful that the world is much more connected via social media and a lot of health information is being obtained beyond the websites that have been recommended to them by us. This exchange of information may impact the questions they are going to bring back to their oncologist. – by Jennifer Southall

For more information:

Lynda Kwon Beaupin, MD, can be reached at Roswell Park Cancer Institute, Elm and Carlton streets, Buffalo, NY 14263; email: lynda.beaupin@roswellpark.org.

Reference:

Gage-Bouchard EA, et al. Cancer Nurs. 2016;doi:10.1097/NCC.0000000000000418.

Disclosure: Beaupin reports no relevant financial disclosures.