Abstract
Tracheotomy in the pediatric population creates unique challenges for parents. Parents often feel underprepared to provide adequate tracheostomy care. Social media is used as a resource for many medical conditions. We looked at Facebook use among parents of children with a tracheostomy to determine how this resource is used as support and to assess common concerns that require improved education prior to discharge. We joined 8 Facebook groups focused on children with a tracheostomy, analyzed the posts for how the groups were used, and identified recurring content. The primary focus of the groups was parental support and general information about tracheostomy care. A common theme identified was patients not receiving medical supplies on time, and groups provided a forum to obtain supplies. Groups also provided general advice about how to travel with a tracheostomy and medical advice, such as when to worry about blood in the tracheostomy tube.
Tracheotomy is performed in the pediatric population for prolonged ventilation and airway stenosis. 1 Many parents do not feel prepared to care for a child with a tracheostomy when discharged. 2 Social media has emerged in recent years as a readily available, frequently used resource for a range of medical questions.3-5 This article seeks to assess how social media is specifically used as a support for parents of children with tracheostomy and to identify common questions that may be addressed with better education.
Other articles have considered social media use for conditions in otolarynology,6-8 including 1 article on how adolescents with tracheostomies use social media. 6 Currently, there is no literature on how parents of children with tracheostomy use social media for support and information.
Methods
This study was approved by the Boston University School of Medicine Institutional Review Board (H-38852). We requested to join national Facebook groups with titles that included the general theme of children with tracheostomy (n = 11) by searching for the terms “trach” and “tracheostomy.” We disclosed the purpose of us joining the group and were unable to join some groups exclusive to patients or parents. Two authors joined each group and reviewed the content of posts for the 8 groups into which we were accepted. The 150th most recent post in the most active group was from 2 years ago (2017), so we decided not to consider posts beyond 2 years ago or >150 posts.
On the basis of previous studies, 8 we approached this topic with modified grounded theory, which is a qualitative research approach that consists of analysis at the same time as data collection to determine broader themes based on the data, rather than through the application of preexisting categories. 9 The generated themes are then applied uniformly to all data. This method produced the following categories: giving/selling equipment, needing equipment, providing support, seeking support, news/advocacy, life event/update, question/seeking information. Posts that were categorized as “question/seeking information” were further classified by content into the following categories: medical, nursing, vent/equipment, decannulation, insurance, product seeking, other ( Figure 1 ).
Number of posts in each category for the 660 posts analyzed.
Results
We were accepted into 8 of 11 tracheostomy groups, 5 of which specifically addressed pediatric tracheostomy care. The other groups included posts about children and adults with tracheostomies. These posts were included because they generally addressed the same themes and represented a population who have had a tracheostomy their whole life. There were cumulatively 660 posts; the categorization of these posts is displayed in Figure 1 .
The classification of the “question/seeking information” posts is presented in Figure 2 . The medical questions (91 posts) included 5 on infection, 4 on treatment of irritation around the tracheostomy, and 5 about blood in the tracheostomy tube.
Topics covered in 302 question-based posts.
Discussion
Many groups serve as a forum for parents of patients with tracheostomies, providing a resource for things that medical providers may not know, such as how to configure the ventilator setup at home, how to store medical supplies, and how to support a child’s mobility. Participants offered creative solutions for travel, water exposure, and how to enable child crawling while on a ventilator.
Overall, groups are most often used by parents to share personal stories as well as seek information to form their expectations for life with a child with a tracheostomy ( Figure 1 ). However, some more specific medical topics were covered ( Figure 2 ). Comments on these posts ranged from a recommendation to speak to a medical provider to advice and insight based on knowledge from personal experiences. This demonstrated a lack of education on certain topics that were more frequently posted about, including infection, treatment for irritation around the tracheostomy, and blood in the tracheostomy tube.
We found that many posts were used to give away equipment that was no longer needed, as well as to ask for necessary equipment ( Figure 1 ). Multiple posts described difficulty with supply delivery from the medical supplier, which commonly forced parents to not change tracheostomy tubes as often as they were directed to.
The 660 posts encompassed 2 years, which is a broader overview than the study done on adolescents with tracheostomies (n = 9), 6 and by focusing on 1 social media platform, we were able to describe themes in more detail than previous studies on social media in otolaryngology. 7 In the context of an estimated 5000 pediatric tracheotomies annually, 10 this is a relatively common procedure, and a growing subset of parents is engaged in social media.
Specific topics about which parents require more education include when to be concerned for tracheitis, when blood in the tracheostomy tube is within normal limits versus concerning for a sentinel bleed, and how to use barriers effectively to prevent skin breakdown and irritation of the tracheostomy site. Future studies should assess the effectiveness of education on these topics and quality of life for parents 1 year after pediatric tracheostomy.
Conclusion
Social media, specifically Facebook groups, is a tool that some parents use to help form expectations for life with a child with a tracheostomy. These groups are used for both emotional support and practical advice for life with a tracheotomy. The recurring problem of receiving medical supplies warrants attention from medical providers in how they set up care for patients. It is important as medical providers to provide more education around the topics of signs of infection and treatment, as well as when to be concerned about blood in the tracheostomy tube, specifically sentinel bleeds. We recommend further studies on the effect of this education and the pursuit of national guidelines on tracheostomy care.
Author Contributions
Disclosures
Footnotes
No sponsorships or competing interests have been disclosed for this article.